Relapse? Immune system kicking on? ABX withdrawal?

[Guest guest]

I was on Rocephin with Actigall for 9 wks, 2 days. I took flagyl for

3 weeks during that time.

Had to go off because several small gallstones formed.

I tried to ramp down -- ala Barb Peck -- with the last dose of

rocephin, then by taking ceftin in reducing doses until I got to just

250 gram per day. Then I stopped. The 1st 3 days after being off all

abx, I went around the house singing, " I feel normal. I feel

normal. " My husband and I were SO hopeful!

Now, only 9 days after the last rocephin & only 3 days after the last

ceftin, I have been feeling tremors & various pains moving around my

head & spine. Yesterday I began feeling burning pain in my spine, and

electric-like feelings in my feet & hands. My legs tingled like they

had fallen " asleep " and just " woke up. " My knees & eyes started

burning, vibrating began behind my eyes and pressure began in my head

& right ear. Lymph nodes in my neck are swollen.

Today, I feel weak & tired.

Is this a neurolyme relapse already?!!!

Could it possibly be, instead, that these symptoms are from my

central nervous system adjusting to the absence of rocephin?

Or, could it be my immune system kicking in?? the lymph nodes & sore

joints felt a little like that.

Please, God, not a relapse. I know people will say you have to go on

orals after IV. But my LLMD started me on oral abx 20 months ago --

he usually has patients try orals first. When I was 80% better, but

not completely well, this spring, he thought IV might finish the lyme

off. So we had high hopes I would not relapse!

Tempe

[Guest guest]

Could we have stories of people who had IV Rocephin and did NOT relapse?!!

Tempe,

Could you explain how you took the flagyl? did you take the 3 weeks in a row or did you space it throughout your Rocephine and ceftin?

I know exactly how you feel, I have felt cured a few times especially after Tinidazole (not so much during)

Nelly

[infections] Relapse? Immune system kicking on? ABX withdrawal?

I was on Rocephin with Actigall for 9 wks, 2 days. I took flagyl for 3 weeks during that time.Had to go off because several small gallstones formed.I tried to ramp down -- ala Barb Peck -- with the last dose of rocephin, then by taking ceftin in reducing doses until I got to just 250 gram per day. Then I stopped. The 1st 3 days after being off all abx, I went around the house singing, "I feel normal. I feel normal." My husband and I were SO hopeful!Now, only 9 days after the last rocephin & only 3 days after the last ceftin, I have been feeling tremors & various pains moving around my head & spine. Yesterday I began feeling burning pain in my spine, and electric-like feelings in my feet & hands. My legs tingled like they had fallen "asleep" and just "woke up." My knees & eyes started burning, vibrating began behind my eyes and pressure began in my head & right ear. Lymph nodes in my neck are swollen.Today, I feel weak & tired.Is this a neurolyme relapse already?!!!Could it possibly be, instead, that these symptoms are from my central nervous system adjusting to the absence of rocephin?Or, could it be my immune system kicking in?? the lymph nodes & sore joints felt a little like that.Please, God, not a relapse. I know people will say you have to go on orals after IV. But my LLMD started me on oral abx 20 months ago -- he usually has patients try orals first. When I was 80% better, but not completely well, this spring, he thought IV might finish the lyme off. So we had high hopes I would not relapse!Tempe

[Guest guest]

What benefits do you anticipate from no longer using abx, or what

risks from continuing?

> Please, God, not a relapse. I know people will say you have to go on

> orals after IV. But my LLMD started me on oral abx 20 months ago --

> he usually has patients try orals first. When I was 80% better, but

> not completely well, this spring, he thought IV might finish the

lyme

> off. So we had high hopes I would not relapse!

>

> Tempe

[Guest guest]

Tempe

What makes your doctor think you have done enough of anything to

start and stop your therapies.I think infections need some tracking

to make them possable to treat correctly. Ramping up ramping down

and getting off drugs means nothing if your guessing. running

pristine blood counts for X amount of time may give you an

indication to say your made good inroads into your infection.You

need to track something , anything is better than nothing.Look

around at low lkevels of anything and monitor there fluctuations?

Just find anything basically and try and return it to completely

normal.

tony

> I was on Rocephin with Actigall for 9 wks, 2 days. I took flagyl

for

> 3 weeks during that time.

>

> Had to go off because several small gallstones formed.

>

> I tried to ramp down -- ala Barb Peck -- with the last dose of

> rocephin, then by taking ceftin in reducing doses until I got to

just

> 250 gram per day. Then I stopped. The 1st 3 days after being off

all

> abx, I went around the house singing, " I feel normal. I feel

> normal. " My husband and I were SO hopeful!

>

> Now, only 9 days after the last rocephin & only 3 days after the

last

> ceftin, I have been feeling tremors & various pains moving around

my

> head & spine. Yesterday I began feeling burning pain in my spine,

and

> electric-like feelings in my feet & hands. My legs tingled like

they

> had fallen " asleep " and just " woke up. " My knees & eyes started

> burning, vibrating began behind my eyes and pressure began in my

head

> & right ear. Lymph nodes in my neck are swollen.

>

> Today, I feel weak & tired.

>

> Is this a neurolyme relapse already?!!!

>

> Could it possibly be, instead, that these symptoms are from my

> central nervous system adjusting to the absence of rocephin?

>

> Or, could it be my immune system kicking in?? the lymph nodes &

sore

> joints felt a little like that.

>

> Please, God, not a relapse. I know people will say you have to go

on

> orals after IV. But my LLMD started me on oral abx 20 months ago --

> he usually has patients try orals first. When I was 80% better,

but

> not completely well, this spring, he thought IV might finish the

lyme

> off. So we had high hopes I would not relapse!

>

> Tempe

[Guest guest]

Good Questions, ,

I only weigh 102 and the antibiotics are hard on my body -- I often

have side effects, and even if I don't have a listed side effect, I

always feel sick & weighted down while on them – not just during a

herx but on a daily basis. I dislike putting these harsh chemicals

in my body, destroying my natural balances, permitting yeast to

flourish, especially when we don't know which abx actually will

impact the particular bacteria/virus combination I have.

I hoped that the 23 months of abx would have reduced the bacterial

load enough that my immune system could keep the infection &

inflammation under control & I could maintain just with supplements,

exercise & hot baths.

This WORKED for me the first time I was sick. I first was bitten by

a tick in Oct. 1990 & by July 1991 was too ill to work. I was

diagnosed in August 1991 after a positive Elissa test, and found a

doc who was on the Board of Directors of the National Lyme Disease

Foundation. (She's since joined the Steere camp for the greater

academic prominence, and wouldn't treat me this time because I didn't

have a positive Western Blot.) She put me on tetracycline for 3

months, then helped me to get biaxin from Europe before it was

approved here by the FDA. I took biaxin with probenicid straight for

6 months. After a total of 9 months of daily abx, I improved to

about 80% of normal. She said then that new research -- at the time -

- proved that the spirochetes could not be killed while in cyst form,

so there was no point in taking the antibiotics every day, and I

should only take them when I felt I was having a return of symptoms --

since that indicated the spirochetes were out of cyst form and could

be killed. (No one knew about flagyl then.)

At first the relapses came every few weeks, then every 6 weeks, then

3 months apart, then 6 months apart -- though sometimes an extra one

would slip back in. Each time I'd take just 1 week of biaxin with

probenicid, soak in hot baths, & do 45 minutes of aerobic exercise

every day. In 1994, I had my last relapse. I was then completely

symptom free and full of energy and life. I worked more than full-

time, raised my children, lived & taught in Europe, lived & taught in

China, wrote books, gave speeches all over the US, with no hint of

any symptoms.

Then, on June 5, 2003, I was bitten by another tick. Because of my

prior experience, I sent the tick to be tested. When the results

were " no borrelia spirochetes were found, " we didn't worry. But I

became symptomatic immediately. Finally, in Oct 2003, an LLMD said

the new tick bite could have provoked a relapse of the original

illness, even if the new tick did not contain spirochetes. So, I

started abx.

The 1st time, the infection did not get into my brain, plus I was

younger, so perhaps that is why I got into remission sooner. This

time, it took 20 months of oral abx to get to about 80% of normal.

We then added IV to get the bacterial load down even more before

trying my 1990s method of taking abx only upon a return of symptoms.

Rocephin was so hard on me -- I felt so sick the entire 1st 8 and a

half weeks, especially when the gallstones began causing daily

nausea, that the idea of going right back on antibiotics --

struggling to work while feeling like crap every day – is awful.

This is a much longer answer than you anticipated, I'm sure, but

perhaps my experience of putting this in remission in the 1990s might

help someone.

>

> What benefits do you anticipate from no longer using abx, or what

> risks from continuing?

>

> > I know people will say you have to go on

> > orals after IV. But my LLMD started me on oral abx 20 months ago -

-

> > he usually has patients try orals first. When I was 80% better,

but

> > not completely well, this spring, he thought IV might finish the

> lyme

> > off. So we had high hopes I would not relapse!

> >

> > Tempe

[Guest guest]

Where do you live?

The tick might not have had borrelia, but it easily could have had

bartonella, babesia, erlichia, mycoplasma, or viruses not yet

identified, or microfilarial worms which are increasingly found in

ticks here in the northeast.

There is a soup of pathogens in ticks. You're getting " vaccinated "

all at once inone tickbite

> >

> > What benefits do you anticipate from no longer using abx, or what

> > risks from continuing?

> >

> > > I know people will say you have to go on

> > > orals after IV. But my LLMD started me on oral abx 20 months

ago -

> -

> > > he usually has patients try orals first. When I was 80% better,

> but

> > > not completely well, this spring, he thought IV might finish

the

> > lyme

> > > off. So we had high hopes I would not relapse!

> > >

> > > Tempe

[Guest guest]

Thanks for the story, a very interesting one, and I always like to

know more histories to feed my theorizing.

I too worry a little about abx-caused dysbiosis... what tends to

reduce or at least cloud my worry, is that after a year of abx I

cannot know whether the abx-caused dysbiosis might already be as bad

as its going to get - or whether or not letting such dysbiosis

persist long term may lead to any new effects which havent already

appeared. In my case the amount of yeast on my tongue fluctuates

alot, but the distribution of its fluctuation is currently the same

as it was just after I started abx. In other words, when you average

over ~2 month periods, it is the same now as it has been since I

started treatment.

I am very interested in some aspects of your story. When you describe

being 80% well from your first illness, does that mean you felt

totally except during flares, or did you also feel less-than-100% at

baseline (that is, between flares)?

If the latter, when did the residual baseline symptoms go away -

during the same time the flares were becoming increasingly sparse?

Dont be too committed to the possibility that you had no microbes in

the brain the first time you were ill. Borrelial and treponemal

asymptomatic neurospirochetoses seem common in many mammals, tho I

forget the details.

I would also take Jills advice and not overcommit to borrelia, since

other microbes need to be considered.

I am very curious how long was it after you think you picked up the

tick that you got sick for the second time? And how sure are you of

when you might have picked it up (as opposed to when you discovered

it)? I think that information could possibly shed some significant

light on whats happening in all our illnesses.

Whatever you decide to do, best wishes on making it back to 100%.

> After a total of 9 months of daily abx, I improved to

> about 80% of normal. She said then that new research -- at the

time -

> - proved that the spirochetes could not be killed while in cyst

form,

> so there was no point in taking the antibiotics every day, and I

> should only take them when I felt I was having a return of

symptoms --

> since that indicated the spirochetes were out of cyst form and

could

> be killed. (No one knew about flagyl then.)

>

> At first the relapses came every few weeks, then every 6 weeks,

then

> 3 months apart, then 6 months apart -- though sometimes an extra

one

> would slip back in. Each time I'd take just 1 week of biaxin with

> probenicid, soak in hot baths, & do 45 minutes of aerobic exercise

> every day. In 1994, I had my last relapse. I was then completely

> symptom free and full of energy and life. I worked more than full-

> time, raised my children, lived & taught in Europe, lived & taught

in

> China, wrote books, gave speeches all over the US, with no hint of

> any symptoms.

[Guest guest]

" jill1313 " wrote: Where do you live?

> The tick might not have had borrelia, but it easily could have had

> bartonella, babesia, erlichia, mycoplasma, or viruses not yet

> identified, or microfilarial worms which are increasingly found in

> ticks here in the northeast.

> There is a soup of pathogens in ticks. You're getting " vaccinated "

> all at once inone tickbite

Jill1313,

Thank you so much for your comment. Your point is one of the reasons

that I want so much to wean off abx – what if it is an arbovirus

causing my continuing symptoms? Then abx won't help & may actually

suppress my own immune system's ability to control it. Yet, if it IS

a borrelia bacteria, or bartonella, or babesia, it will worsen if I

DON'T take abx. So I have had to gamble that it is one or more of

the bacterias causing the infection & constant inflammation, rather

than one or more of the viruses.

I live in the South. The blood tests for erhlichiosis are considered

accurate & I tested negative for that. I tested negative for

bartonella, but my LLMD says that none of his patients has ever

tested positive for bartonella or babesia – he thinks the current

blood test for those illnesses are not responsive to the species in

this region. He prescribes for those illnesses based on symptoms &

didn't think I had babesia. He did prescribe rifampin for bart, but

I tried twice & could not get past the 3rd pill, it made me so sick.

So he had me take 6 – 8 weeks of cipro. It made no difference in my

symptoms.

My SPECT & PET Scans at Columbia, though, were consistent with Lyme

Disease – the patterns of vasculitis & hypoperfusion of blood in the

brain were heterogenous & diffuse.

The tick that bit me in June 5, 2003 was a lonestar tick. Dr Ed

Masters, whose work first caused the CDC to recognize borrelia

lonestai, published an article in April 2005 arguing that the

symptoms after a tick bite in the people he studied in MO were not

caused by borrelia burgdorferi or borrelia lonestari, as he'd

previously argued, but by an unknown pathogen. He did PCRs of the

blood of patients who had all the Lyme/STARI symptoms, including the

bullseye rash, but did not find evidence of either spirochete

present. So he's still investigating what it is down here.

I donated some of my blood & enrolled in a study at University of

Texas that is trying to create a blood test for borrelia lonestari.

The Director of University of Texas's Lyme Disease Research Lab first

said he found " something " in my blood that caused 2 positive bands on

his test, but then re-tested and decided it was not positive for

borrelia bacteria DNA. He didn't know what it was that caused the

positive bands. Then this summer, we sent him a tick I pulled off of

my husband. He telephoned & told me it was positive for borrelia

bacteria, so my husband started on abx. A week later, the Director

called back & said they re-tested, and it had been a false positive.

So SOMETHING down south is related enough to borrelia bacteria that

it causes some positive bands -- and causes the same symptoms in

humans -- but it either is a species of borrelia not yet identified,

or it is not borrelia at all. It just makes the whole ordeal even

more confusing.

And the big question all this leaves me with is, Do I keep taking

antibiotics?

I'm particularly confused about what is happening after going off

rocephin. The positive effect is that my thinking & analyzing

ability feels pre-tick-bite normal. So I'm happy about that & don't

want to lose that ground by staying off abx.

On the other hand, parasthesias in my arms, legs, feet, hands & head

were part of my symptoms post-tick-bite & pre-abx in 2003, but I've

not had them since summer of 2004, after going off of flagyl. If

this is a relapse, then I have relapsed much farther back than I was

when I started rocephin.

On the other hand, I felt significant swelling in my head during the

weeks I was on rocephin. I remember Tom Grier posting an article

warning about the brain swelling on rocephin – I tried some of his

suggestions to minimize that. But, I wonder if these parathesias

could be due to contracting of the brain after withdrawal of the

rocephin, rather than due to a relapse?

Tempe

[Guest guest]

" dumbaussie2000 " wrote: Tempe > What makes your doctor think you have

done enough of anything to start and stop your therapies.I think

infections need some tracking

> to make them possable to treat correctly. Ramping up ramping down

> and getting off drugs means nothing if your guessing. running

> pristine blood counts for X amount of time may give you an

> indication to say your made good inroads into your infection.You

> need to track something , anything is better than nothing.Look

> around at low lkevels of anything and monitor there fluctuations?

> Just find anything basically and try and return it to completely

> normal.

> tony

Good Suggestion. I made an appointment to go in on Thurs to have a

complete panel of tests taken.

I also made an appointment for Oct at Columbia for a comparative

SPECT Scan. I went to the neurologist on Dr Fallon's team for my

original SPECT Scan. She's actually not encouraging me to have the

repeat one done -- she says they sometimes show a difference after

treatment with rocephin & sometimes show no difference. Her comment

kind of calls into question their usefulness as a test for diagnostic

purposes, doesn't it?

[Guest guest]

Hi there, I thought Ed Masters had just published a paper on

lonestari...I thought it had finally been acknowledged? Now he feels

there is something else? I'm confused. I thought it was the CDC that

kept harrassing him and saying it wasn't bb so it wasn't " lyme " ,

idiotic crap.

I don't think babesia is too common down there, its epidemic where I

got bit in Connecticut, and is the thing that has done me in, moreso

than lyme, I believe. I'm still waiting for the thick/thin blood

smear although my fish test was positive--I had my blood drawn 8 days

ago and the head pathologist agreed to look at it, and it was right

across the street, but the HMO cares SO LITTLE that I had to call

Friday, and talk to 4 different people, " What's your name? Who's your

doctor? " and finally, " No tests back yet, we'll call you back " and

then later, " Yes, tests back, we'll put them in his folder and he'll

call you. " Lovely.

Anyway. My memory about rocephin which could be wrong? is that the

MIC is not so great...people seem to relapse off it anecdotally but I

don' tknow a lot about it.

>

> Thank you so much for your comment. Your point is one of the

reasons

> that I want so much to wean off abx – what if it is an arbovirus

> causing my continuing symptoms? Then abx won't help & may actually

> suppress my own immune system's ability to control it. Yet, if it

IS

> a borrelia bacteria, or bartonella, or babesia, it will worsen if I

> DON'T take abx. So I have had to gamble that it is one or more of

> the bacterias causing the infection & constant inflammation, rather

> than one or more of the viruses.

>

> I live in the South. The blood tests for erhlichiosis are

considered

> accurate & I tested negative for that. I tested negative for

> bartonella, but my LLMD says that none of his patients has ever

> tested positive for bartonella or babesia – he thinks the current

> blood test for those illnesses are not responsive to the species in

> this region. He prescribes for those illnesses based on symptoms &

> didn't think I had babesia. He did prescribe rifampin for bart,

but

> I tried twice & could not get past the 3rd pill, it made me so

sick.

> So he had me take 6 – 8 weeks of cipro. It made no difference in

my

> symptoms.

>

> My SPECT & PET Scans at Columbia, though, were consistent with Lyme

> Disease – the patterns of vasculitis & hypoperfusion of blood in

the

> brain were heterogenous & diffuse.

>

> The tick that bit me in June 5, 2003 was a lonestar tick. Dr Ed

> Masters, whose work first caused the CDC to recognize borrelia

> lonestai, published an article in April 2005 arguing that the

> symptoms after a tick bite in the people he studied in MO were not

> caused by borrelia burgdorferi or borrelia lonestari, as he'd

> previously argued, but by an unknown pathogen. He did PCRs of the

> blood of patients who had all the Lyme/STARI symptoms, including

the

> bullseye rash, but did not find evidence of either spirochete

> present. So he's still investigating what it is down here.

>

> I donated some of my blood & enrolled in a study at University of

> Texas that is trying to create a blood test for borrelia

lonestari.

> The Director of University of Texas's Lyme Disease Research Lab

first

> said he found " something " in my blood that caused 2 positive bands

on

> his test, but then re-tested and decided it was not positive for

> borrelia bacteria DNA. He didn't know what it was that caused the

> positive bands. Then this summer, we sent him a tick I pulled off

of

> my husband. He telephoned & told me it was positive for borrelia

> bacteria, so my husband started on abx. A week later, the Director

> called back & said they re-tested, and it had been a false

positive.

> So SOMETHING down south is related enough to borrelia bacteria that

> it causes some positive bands -- and causes the same symptoms in

> humans -- but it either is a species of borrelia not yet

identified,

> or it is not borrelia at all. It just makes the whole ordeal even

> more confusing.

>

> And the big question all this leaves me with is, Do I keep taking

> antibiotics?

>

> I'm particularly confused about what is happening after going off

> rocephin. The positive effect is that my thinking & analyzing

> ability feels pre-tick-bite normal. So I'm happy about that &

don't

> want to lose that ground by staying off abx.

>

> On the other hand, parasthesias in my arms, legs, feet, hands &

head

> were part of my symptoms post-tick-bite & pre-abx in 2003, but I've

> not had them since summer of 2004, after going off of flagyl. If

> this is a relapse, then I have relapsed much farther back than I

was

> when I started rocephin.

>

> On the other hand, I felt significant swelling in my head during

the

> weeks I was on rocephin. I remember Tom Grier posting an article

> warning about the brain swelling on rocephin – I tried some of his

> suggestions to minimize that. But, I wonder if these parathesias

> could be due to contracting of the brain after withdrawal of the

> rocephin, rather than due to a relapse?

>

> Tempe

[Guest guest]

" jill1313 " wrote:

> Hi there, I thought Ed Masters had just published a paper on

> lonestari...I thought it had finally been acknowledged? Now he feels

there is something else?

Right, Jill. The CDC HAS recognized borrelia lonestari, thanks to Ed

Masters. But he has continued to research it, and thinks there is

something else as well.

I was surprised, too, when I read Masters' article, written along with

Wormser & Schwartz & others. It's called " Microbiologic Evaluations of

Patients from Missouri with Erythema Migrans " and was published in

Clinical Infectious Diseases 2005; 40:423-8.

ly, I think THEY were surprised. They started out to write an

article supporting borrelia lonestari, but their blood tests came out

the opposite of what they expected. In the article they

conclude, " Neither B. lonestari nor B. burgdorferi is likely to be the

cause of EM-like skin lesions in patients from the Cape Girardeau area

of Missouri. The etiology of this condition remains unknown. "

The Director of University of Texas' Lyme Disease Research Lab things

they just did the PCR test incorrectly, so now he's writing an article

intending to take that position.

Tempe

[Guest guest]

wormser & Masters together...my head is falling apart .

Can you email me a PDF of the study if you have it?

jenbooks13@...

> > Hi there, I thought Ed Masters had just published a paper on

> > lonestari...I thought it had finally been acknowledged? Now he

feels

> there is something else?

>

>

> Right, Jill. The CDC HAS recognized borrelia lonestari, thanks to

Ed

> Masters. But he has continued to research it, and thinks there is

> something else as well.

>

> I was surprised, too, when I read Masters' article, written along

with

> Wormser & Schwartz & others. It's called " Microbiologic

Evaluations of

> Patients from Missouri with Erythema Migrans " and was published in

> Clinical Infectious Diseases 2005; 40:423-8.

>

> ly, I think THEY were surprised. They started out to write an

> article supporting borrelia lonestari, but their blood tests came

out

> the opposite of what they expected. In the article they

> conclude, " Neither B. lonestari nor B. burgdorferi is likely to be

the

> cause of EM-like skin lesions in patients from the Cape Girardeau

area

> of Missouri. The etiology of this condition remains unknown. "

>

> The Director of University of Texas' Lyme Disease Research Lab

things

> they just did the PCR test incorrectly, so now he's writing an

article

> intending to take that position.

>

> Tempe

[Guest guest]

" " wrote:

>

When you describe being 80% well from your first illness, does that

mean you felt totally except during flares, or did you also feel less-

than-100% at baseline (that is, between flares)?

.. . .

> If the latter, when did the residual baseline symptoms go away -

> during the same time the flares were becoming increasingly sparse?

.. . .

I am very curious how long was it after you think you picked up the

> tick that you got sick for the second time? And how sure are you of

> when you might have picked it up (as opposed to when you discovered

> it)? I think that information could possibly shed some significant

> light on whats happening in all our illnesses.

,

Thank you for your comments! To answer your questions above, I felt

less-than-100% at baseline, baseline being the point where my Dr-at-

the-time told me to begin just taking antibiotics when I had flares.

But most of my symptoms were gone.

More specifically, during that first illness, my primary symptoms

were total absence of energy; mitral valve prolapse; arthritic pain

in hip joint, knees, ankles & wrists; inflamed sciatic nerve with

inflammation nerves in legs & across lower back; brain fog, & low

body temp but feeling " hot inside. " At the point that I say I felt

80%, I had about 80% of my normal energy back and still had some pain

in my hip joint & knees, but the other symptoms were gone.

Those residual symptoms went away as the flares were becoming more

sparse. I was to the point of having all my normal energy back & hip

joint & knee pain gone almost a year before the last flare.

Regarding the 2nd tick bite, I pulled it off the side of my knee at

7:00 p.m. on Friday, June 6!!!! (None of us who've been through this

will ever forget finding another tick on our bodies!) I have assumed

it got on me around noon Thursday when I was out in the yard. I

actually started to feel sick Thursday afternoon, BEFORE I even found

the tick. I felt Flu-like symptoms, so thought I had picked up a

virus. By Sat & Sun I was feeling a lot of pressure in my head &

right eye. The flu-like symptoms began to resolve by about the next

Thursday, but the head pressure & pressure behind my right eye were

much worse . . . and on it went from there into full-blown neurolyme

& meningitis-like symptoms.

It may be that a relapse was in the works, and the 2nd tick-bite

somehow just let it fully loose. Over the preceding 2 years, I had a

few episodes where I thought must have a virus, but the only symptoms

were achiness & total absence of energy. My immune system would take

about 2 weeks to fight it off. I remember commenting that when I was

younger, I would get over a virus in 3-5 days, but now everything

seemed to last 2 weeks.

If any of that " sheds any light, " let me know -- I could use a little.

tempe

[Guest guest]

Huh, far out. Each multiplication of borrelia takes 12-24 hours in

vitro. That doesnt necessarily tell you what it is in vivo, but I am

not aware of any very significant vitro/vivo differences in bacterial

generation times (or of any studies looking for such differences).

Was he engorged somewhat, or " flat " ? Why do you particularly think

that Thursday?

I dont know how long such ticks generally stay on you, but the one

time I had a fully engorged one, I had fairly good reason to think it

had been on for a week or 10 days.

I used to get lonestars on the Virginia coast when I was a kid. At

least you can see the bastards (as opposed to Ixodes).

Of course, what you got sick with that day could have been a

different microbe than the one you stayed sick with. But I think even

most viruses have an incubation time measured in days. Yet the tick

seems unlikely to be coincidental.

> Regarding the 2nd tick bite, I pulled it off the side of my knee at

> 7:00 p.m. on Friday, June 6!!!! (None of us who've been through

this

> will ever forget finding another tick on our bodies!) I have

assumed

> it got on me around noon Thursday when I was out in the yard. I

> actually started to feel sick Thursday afternoon, BEFORE I even

found

> the tick. I felt Flu-like symptoms, so thought I had picked up a

> virus. By Sat & Sun I was feeling a lot of pressure in my head &

> right eye. The flu-like symptoms began to resolve by about the

next

> Thursday, but the head pressure & pressure behind my right eye were

> much worse . . . and on it went from there into full-blown

neurolyme

> & meningitis-like symptoms.

>

> It may be that a relapse was in the works, and the 2nd tick-bite

> somehow just let it fully loose. Over the preceding 2 years, I had

a

> few episodes where I thought must have a virus, but the only

symptoms

> were achiness & total absence of energy. My immune system would

take

> about 2 weeks to fight it off. I remember commenting that when I

was

> younger, I would get over a virus in 3-5 days, but now everything

> seemed to last 2 weeks.

[Guest guest]

Tempe

I get blasted for being negative towards people bothering with these

negative then positive then intermediate tests. My whole goal is aim

at the real deal bacteria instead of becoming a money spinner for

charletans.You've got enough oppurtunistic bacteria that will kill

you after a severe burn, why do you need to follow after some

unidentafiable impossable to treat species that don't even respond

correctly to the treatment.

Tempe > What makes your doctor think you

have

> done enough of anything to start and stop your therapies.I think

> infections need some tracking

> > to make them possable to treat correctly. Ramping up ramping

down

> > and getting off drugs means nothing if your guessing. running

> > pristine blood counts for X amount of time may give you an

> > indication to say your made good inroads into your infection.You

> > need to track something , anything is better than nothing.Look

> > around at low lkevels of anything and monitor there fluctuations?

> > Just find anything basically and try and return it to completely

> > normal.

> > tony

>

>

> Good Suggestion. I made an appointment to go in on Thurs to have

a

> complete panel of tests taken.

>

> I also made an appointment for Oct at Columbia for a comparative

> SPECT Scan. I went to the neurologist on Dr Fallon's team for my

> original SPECT Scan. She's actually not encouraging me to have

the

> repeat one done -- she says they sometimes show a difference after

> treatment with rocephin & sometimes show no difference. Her

comment

> kind of calls into question their usefulness as a test for

diagnostic

> purposes, doesn't it?

[Guest guest]

Jill;

What a disaster a simple test like a thin thick parasitic smear is

causing?I would love to know if they see the babesia? You wonder

with all the rigmarol around your insurance and the like- how

UNBLESSED we are to have such a paper trail medical system.Actually

you may want to discuss if she can see those howell jolly bodies

that may grow up to be micrococcal species in a petri dish.

> Hi there, I thought Ed Masters had just published a paper on

> lonestari...I thought it had finally been acknowledged? Now he

feels

> there is something else? I'm confused. I thought it was the CDC

that

> kept harrassing him and saying it wasn't bb so it wasn't " lyme " ,

> idiotic crap.

>

> I don't think babesia is too common down there, its epidemic where

I

> got bit in Connecticut, and is the thing that has done me in,

moreso

> than lyme, I believe. I'm still waiting for the thick/thin blood

> smear although my fish test was positive--I had my blood drawn 8

days

> ago and the head pathologist agreed to look at it, and it was

right

> across the street, but the HMO cares SO LITTLE that I had to call

> Friday, and talk to 4 different people, " What's your name? Who's

your

> doctor? " and finally, " No tests back yet, we'll call you back " and

> then later, " Yes, tests back, we'll put them in his folder and

he'll

> call you. " Lovely.

>

> Anyway. My memory about rocephin which could be wrong? is that the

> MIC is not so great...people seem to relapse off it anecdotally

but I

> don' tknow a lot about it.

>

> >

> > Thank you so much for your comment. Your point is one of the

> reasons

> > that I want so much to wean off abx – what if it is an arbovirus

> > causing my continuing symptoms? Then abx won't help & may

actually

> > suppress my own immune system's ability to control it. Yet, if

it

> IS

> > a borrelia bacteria, or bartonella, or babesia, it will worsen

if I

> > DON'T take abx. So I have had to gamble that it is one or more

of

> > the bacterias causing the infection & constant inflammation,

rather

> > than one or more of the viruses.

> >

> > I live in the South. The blood tests for erhlichiosis are

> considered

> > accurate & I tested negative for that. I tested negative for

> > bartonella, but my LLMD says that none of his patients has ever

> > tested positive for bartonella or babesia – he thinks the

current

> > blood test for those illnesses are not responsive to the species

in

> > this region. He prescribes for those illnesses based on

symptoms &

> > didn't think I had babesia. He did prescribe rifampin for bart,

> but

> > I tried twice & could not get past the 3rd pill, it made me so

> sick.

> > So he had me take 6 – 8 weeks of cipro. It made no difference

in

> my

> > symptoms.

> >

> > My SPECT & PET Scans at Columbia, though, were consistent with

Lyme

> > Disease – the patterns of vasculitis & hypoperfusion of blood in

> the

> > brain were heterogenous & diffuse.

> >

> > The tick that bit me in June 5, 2003 was a lonestar tick. Dr Ed

> > Masters, whose work first caused the CDC to recognize borrelia

> > lonestai, published an article in April 2005 arguing that the

> > symptoms after a tick bite in the people he studied in MO were

not

> > caused by borrelia burgdorferi or borrelia lonestari, as he'd

> > previously argued, but by an unknown pathogen. He did PCRs of

the

> > blood of patients who had all the Lyme/STARI symptoms, including

> the

> > bullseye rash, but did not find evidence of either spirochete

> > present. So he's still investigating what it is down here.

> >

> > I donated some of my blood & enrolled in a study at University

of

> > Texas that is trying to create a blood test for borrelia

> lonestari.

> > The Director of University of Texas's Lyme Disease Research Lab

> first

> > said he found " something " in my blood that caused 2 positive

bands

> on

> > his test, but then re-tested and decided it was not positive for

> > borrelia bacteria DNA. He didn't know what it was that caused

the

> > positive bands. Then this summer, we sent him a tick I pulled

off

> of

> > my husband. He telephoned & told me it was positive for

borrelia

> > bacteria, so my husband started on abx. A week later, the

Director

> > called back & said they re-tested, and it had been a false

> positive.

> > So SOMETHING down south is related enough to borrelia bacteria

that

> > it causes some positive bands -- and causes the same symptoms in

> > humans -- but it either is a species of borrelia not yet

> identified,

> > or it is not borrelia at all. It just makes the whole ordeal

even

> > more confusing.

> >

> > And the big question all this leaves me with is, Do I keep

taking

> > antibiotics?

> >

> > I'm particularly confused about what is happening after going

off

> > rocephin. The positive effect is that my thinking & analyzing

> > ability feels pre-tick-bite normal. So I'm happy about that &

> don't

> > want to lose that ground by staying off abx.

> >

> > On the other hand, parasthesias in my arms, legs, feet, hands &

> head

> > were part of my symptoms post-tick-bite & pre-abx in 2003, but

I've

> > not had them since summer of 2004, after going off of flagyl.

If

> > this is a relapse, then I have relapsed much farther back than I

> was

> > when I started rocephin.

> >

> > On the other hand, I felt significant swelling in my head during

> the

> > weeks I was on rocephin. I remember Tom Grier posting an

article

> > warning about the brain swelling on rocephin – I tried some of

his

> > suggestions to minimize that. But, I wonder if these

parathesias

> > could be due to contracting of the brain after withdrawal of the

> > rocephin, rather than due to a relapse?

> >

> > Tempe

[Guest guest]

Piano poofters as you said .

Its more than a disaster. If you're sick and tired and you can't

advocate for yourself (I can butt them a little with my credentials,

though that doesn't always work)...

The hospital is right across the street from the clinic and the

willing head pathologist said to email her after I had my blood

drawn, which I did. So I'm sure she looked at it that day or Monday.

So it was Friday yesterday but they could care less. You don't know

how annoying it is to be put on hold 4 times, spending about 20

minutes on the phone, and each time someone says, " Who are you?

What's your doctor's name? " ...and will he call me back Monday?

Unlikely. I'll have to call a few times next week. Anyway, it doesn't

make a huge amount of differnece to treatment I suppose...if I've got

the RNA of the organism detectible, its in there doin' its thang.

I wish I could ask her about a really good look at my blood but she's

already been extremely kind to a stranger she will probably never

meet.

> > Hi there, I thought Ed Masters had just published a paper on

> > lonestari...I thought it had finally been acknowledged? Now he

> feels

> > there is something else? I'm confused. I thought it was the CDC

> that

> > kept harrassing him and saying it wasn't bb so it wasn't " lyme " ,

> > idiotic crap.

> >

> > I don't think babesia is too common down there, its epidemic

where

> I

> > got bit in Connecticut, and is the thing that has done me in,

> moreso

> > than lyme, I believe. I'm still waiting for the thick/thin blood

> > smear although my fish test was positive--I had my blood drawn 8

> days

> > ago and the head pathologist agreed to look at it, and it was

> right

> > across the street, but the HMO cares SO LITTLE that I had to call

> > Friday, and talk to 4 different people, " What's your name? Who's

> your

> > doctor? " and finally, " No tests back yet, we'll call you back "

and

> > then later, " Yes, tests back, we'll put them in his folder and

> he'll

> > call you. " Lovely.

> >

> > Anyway. My memory about rocephin which could be wrong? is that

the

> > MIC is not so great...people seem to relapse off it anecdotally

> but I

> > don' tknow a lot about it.

> >

> > >

> > > Thank you so much for your comment. Your point is one of the

> > reasons

> > > that I want so much to wean off abx – what if it is an

arbovirus

> > > causing my continuing symptoms? Then abx won't help & may

> actually

> > > suppress my own immune system's ability to control it. Yet, if

> it

> > IS

> > > a borrelia bacteria, or bartonella, or babesia, it will worsen

> if I

> > > DON'T take abx. So I have had to gamble that it is one or more

> of

> > > the bacterias causing the infection & constant inflammation,

> rather

> > > than one or more of the viruses.

> > >

> > > I live in the South. The blood tests for erhlichiosis are

> > considered

> > > accurate & I tested negative for that. I tested negative for

> > > bartonella, but my LLMD says that none of his patients has ever

> > > tested positive for bartonella or babesia – he thinks the

> current

> > > blood test for those illnesses are not responsive to the

species

> in

> > > this region. He prescribes for those illnesses based on

> symptoms &

> > > didn't think I had babesia. He did prescribe rifampin for

bart,

> > but

> > > I tried twice & could not get past the 3rd pill, it made me so

> > sick.

> > > So he had me take 6 – 8 weeks of cipro. It made no difference

> in

> > my

> > > symptoms.

> > >

> > > My SPECT & PET Scans at Columbia, though, were consistent with

> Lyme

> > > Disease – the patterns of vasculitis & hypoperfusion of blood

in

> > the

> > > brain were heterogenous & diffuse.

> > >

> > > The tick that bit me in June 5, 2003 was a lonestar tick. Dr

Ed

> > > Masters, whose work first caused the CDC to recognize borrelia

> > > lonestai, published an article in April 2005 arguing that the

> > > symptoms after a tick bite in the people he studied in MO were

> not

> > > caused by borrelia burgdorferi or borrelia lonestari, as he'd

> > > previously argued, but by an unknown pathogen. He did PCRs of

> the

> > > blood of patients who had all the Lyme/STARI symptoms,

including

> > the

> > > bullseye rash, but did not find evidence of either spirochete

> > > present. So he's still investigating what it is down here.

> > >

> > > I donated some of my blood & enrolled in a study at University

> of

> > > Texas that is trying to create a blood test for borrelia

> > lonestari.

> > > The Director of University of Texas's Lyme Disease Research Lab

> > first

> > > said he found " something " in my blood that caused 2 positive

> bands

> > on

> > > his test, but then re-tested and decided it was not positive

for

> > > borrelia bacteria DNA. He didn't know what it was that caused

> the

> > > positive bands. Then this summer, we sent him a tick I pulled

> off

> > of

> > > my husband. He telephoned & told me it was positive for

> borrelia

> > > bacteria, so my husband started on abx. A week later, the

> Director

> > > called back & said they re-tested, and it had been a false

> > positive.

> > > So SOMETHING down south is related enough to borrelia bacteria

> that

> > > it causes some positive bands -- and causes the same symptoms

in

> > > humans -- but it either is a species of borrelia not yet

> > identified,

> > > or it is not borrelia at all. It just makes the whole ordeal

> even

> > > more confusing.

> > >

> > > And the big question all this leaves me with is, Do I keep

> taking

> > > antibiotics?

> > >

> > > I'm particularly confused about what is happening after going

> off

> > > rocephin. The positive effect is that my thinking & analyzing

> > > ability feels pre-tick-bite normal. So I'm happy about that &

> > don't

> > > want to lose that ground by staying off abx.

> > >

> > > On the other hand, parasthesias in my arms, legs, feet, hands &

> > head

> > > were part of my symptoms post-tick-bite & pre-abx in 2003, but

> I've

> > > not had them since summer of 2004, after going off of flagyl.

> If

> > > this is a relapse, then I have relapsed much farther back than

I

> > was

> > > when I started rocephin.

> > >

> > > On the other hand, I felt significant swelling in my head

during

> > the

> > > weeks I was on rocephin. I remember Tom Grier posting an

> article

> > > warning about the brain swelling on rocephin – I tried some of

> his

> > > suggestions to minimize that. But, I wonder if these

> parathesias

> > > could be due to contracting of the brain after withdrawal of

the

> > > rocephin, rather than due to a relapse?

> > >

> > > Tempe

[Guest guest]

Jill

It's a full catastrophe this medical equation.I noticed something

similar with a documentary on a nevada province in california.You

virtually had this whole legal system where everyone's on permanent

vacation and the victims are all shuffled thru the gaol system to

serve varying amount of time wether guilty or not.The judge and

prosecutor never ever got near anyone- out of 900 cases I believe

they heard 1.The rest was all plea bargaining to keep people away

from the expensive process of, if your incapable a lawyer will be

appointed for you.Medicine and law seem to get uglier and uglier as

time goes on...I think people feel that doctors order blood tests

because they want to interpret how your doing - I noticed they do

things according to trying to meet a quota and what they can get

away with.The interpretation part speaks for itself anything that

isn't going to keel you over in the next few days is called

everything's great.

Your at least trying a positive move Jill that is refreshingly

different. persistance in this may yield some huge benefits in the

future.The goal I beleive is to get to some switched on people- as

unfortunately many lab people are just going thru the motions and

haven't a clue what's passed arms length in a spot they 've worked

ten years.I have encountered these in my travels.

> > > Hi there, I thought Ed Masters had just published a paper on

> > > lonestari...I thought it had finally been acknowledged? Now he

> > feels

> > > there is something else? I'm confused. I thought it was the

CDC

> > that

> > > kept harrassing him and saying it wasn't bb so it

wasn't " lyme " ,

> > > idiotic crap.

> > >

> > > I don't think babesia is too common down there, its epidemic

> where

> > I

> > > got bit in Connecticut, and is the thing that has done me in,

> > moreso

> > > than lyme, I believe. I'm still waiting for the thick/thin

blood

> > > smear although my fish test was positive--I had my blood drawn

8

> > days

> > > ago and the head pathologist agreed to look at it, and it was

> > right

> > > across the street, but the HMO cares SO LITTLE that I had to

call

> > > Friday, and talk to 4 different people, " What's your name?

Who's

> > your

> > > doctor? " and finally, " No tests back yet, we'll call you back "

> and

> > > then later, " Yes, tests back, we'll put them in his folder and

> > he'll

> > > call you. " Lovely.

> > >

> > > Anyway. My memory about rocephin which could be wrong? is that

> the

> > > MIC is not so great...people seem to relapse off it

anecdotally

> > but I

> > > don' tknow a lot about it.

> > >

> > > >

> > > > Thank you so much for your comment. Your point is one of

the

> > > reasons

> > > > that I want so much to wean off abx – what if it is an

> arbovirus

> > > > causing my continuing symptoms? Then abx won't help & may

> > actually

> > > > suppress my own immune system's ability to control it. Yet,

if

> > it

> > > IS

> > > > a borrelia bacteria, or bartonella, or babesia, it will

worsen

> > if I

> > > > DON'T take abx. So I have had to gamble that it is one or

more

> > of

> > > > the bacterias causing the infection & constant inflammation,

> > rather

> > > > than one or more of the viruses.

> > > >

> > > > I live in the South. The blood tests for erhlichiosis are

> > > considered

> > > > accurate & I tested negative for that. I tested negative

for

> > > > bartonella, but my LLMD says that none of his patients has

ever

> > > > tested positive for bartonella or babesia – he thinks the

> > current

> > > > blood test for those illnesses are not responsive to the

> species

> > in

> > > > this region. He prescribes for those illnesses based on

> > symptoms &

> > > > didn't think I had babesia. He did prescribe rifampin for

> bart,

> > > but

> > > > I tried twice & could not get past the 3rd pill, it made me

so

> > > sick.

> > > > So he had me take 6 – 8 weeks of cipro. It made no

difference

> > in

> > > my

> > > > symptoms.

> > > >

> > > > My SPECT & PET Scans at Columbia, though, were consistent

with

> > Lyme

> > > > Disease – the patterns of vasculitis & hypoperfusion of

blood

> in

> > > the

> > > > brain were heterogenous & diffuse.

> > > >

> > > > The tick that bit me in June 5, 2003 was a lonestar tick.

Dr

> Ed

> > > > Masters, whose work first caused the CDC to recognize

borrelia

> > > > lonestai, published an article in April 2005 arguing that

the

> > > > symptoms after a tick bite in the people he studied in MO

were

> > not

> > > > caused by borrelia burgdorferi or borrelia lonestari, as

he'd

> > > > previously argued, but by an unknown pathogen. He did PCRs

of

> > the

> > > > blood of patients who had all the Lyme/STARI symptoms,

> including

> > > the

> > > > bullseye rash, but did not find evidence of either

spirochete

> > > > present. So he's still investigating what it is down here.

> > > >

> > > > I donated some of my blood & enrolled in a study at

University

> > of

> > > > Texas that is trying to create a blood test for borrelia

> > > lonestari.

> > > > The Director of University of Texas's Lyme Disease Research

Lab

> > > first

> > > > said he found " something " in my blood that caused 2 positive

> > bands

> > > on

> > > > his test, but then re-tested and decided it was not positive

> for

> > > > borrelia bacteria DNA. He didn't know what it was that

caused

> > the

> > > > positive bands. Then this summer, we sent him a tick I

pulled

> > off

> > > of

> > > > my husband. He telephoned & told me it was positive for

> > borrelia

> > > > bacteria, so my husband started on abx. A week later, the

> > Director

> > > > called back & said they re-tested, and it had been a false

> > > positive.

> > > > So SOMETHING down south is related enough to borrelia

bacteria

> > that

> > > > it causes some positive bands -- and causes the same

symptoms

> in

> > > > humans -- but it either is a species of borrelia not yet

> > > identified,

> > > > or it is not borrelia at all. It just makes the whole

ordeal

> > even

> > > > more confusing.

> > > >

> > > > And the big question all this leaves me with is, Do I keep

> > taking

> > > > antibiotics?

> > > >

> > > > I'm particularly confused about what is happening after

going

> > off

> > > > rocephin. The positive effect is that my thinking &

analyzing

> > > > ability feels pre-tick-bite normal. So I'm happy about that

&

> > > don't

> > > > want to lose that ground by staying off abx.

> > > >

> > > > On the other hand, parasthesias in my arms, legs, feet,

hands &

> > > head

> > > > were part of my symptoms post-tick-bite & pre-abx in 2003,

but

> > I've

> > > > not had them since summer of 2004, after going off of

flagyl.

> > If

> > > > this is a relapse, then I have relapsed much farther back

than

> I

> > > was

> > > > when I started rocephin.

> > > >

> > > > On the other hand, I felt significant swelling in my head

> during

> > > the

> > > > weeks I was on rocephin. I remember Tom Grier posting an

> > article

> > > > warning about the brain swelling on rocephin – I tried some

of

> > his

> > > > suggestions to minimize that. But, I wonder if these

> > parathesias

> > > > could be due to contracting of the brain after withdrawal of

> the

> > > > rocephin, rather than due to a relapse?

> > > >

> > > > Tempe

[Guest guest]

Tony you do inspire me.

I think I should leave a bottle of wine for the pathologist (not the

doctor!). Whatever the test results. I really wish I had a friend who

would look at my blood for me (I mean, like this pathologist).

One feels like one has to move at a snail's pace. I have been told by

those working in the system that docs will be fired if they see less

than 40 patientts a day and the goal is 50 plus. They are rewarded

for very brief visits and write out a generic Rx.

> > > > Hi there, I thought Ed Masters had just published a paper on

> > > > lonestari...I thought it had finally been acknowledged? Now

he

> > > feels

> > > > there is something else? I'm confused. I thought it was the

> CDC

> > > that

> > > > kept harrassing him and saying it wasn't bb so it

> wasn't " lyme " ,

> > > > idiotic crap.

> > > >

> > > > I don't think babesia is too common down there, its epidemic

> > where

> > > I

> > > > got bit in Connecticut, and is the thing that has done me in,

> > > moreso

> > > > than lyme, I believe. I'm still waiting for the thick/thin

> blood

> > > > smear although my fish test was positive--I had my blood

drawn

> 8

> > > days

> > > > ago and the head pathologist agreed to look at it, and it was

> > > right

> > > > across the street, but the HMO cares SO LITTLE that I had to

> call

> > > > Friday, and talk to 4 different people, " What's your name?

> Who's

> > > your

> > > > doctor? " and finally, " No tests back yet, we'll call you

back "

> > and

> > > > then later, " Yes, tests back, we'll put them in his folder

and

> > > he'll

> > > > call you. " Lovely.

> > > >

> > > > Anyway. My memory about rocephin which could be wrong? is

that

> > the

> > > > MIC is not so great...people seem to relapse off it

> anecdotally

> > > but I

> > > > don' tknow a lot about it.

> > > >

> > > > >

> > > > > Thank you so much for your comment. Your point is one of

> the

> > > > reasons

> > > > > that I want so much to wean off abx – what if it is an

> > arbovirus

> > > > > causing my continuing symptoms? Then abx won't help & may

> > > actually

> > > > > suppress my own immune system's ability to control it.

Yet,

> if

> > > it

> > > > IS

> > > > > a borrelia bacteria, or bartonella, or babesia, it will

> worsen

> > > if I

> > > > > DON'T take abx. So I have had to gamble that it is one or

> more

> > > of

> > > > > the bacterias causing the infection & constant

inflammation,

> > > rather

> > > > > than one or more of the viruses.

> > > > >

> > > > > I live in the South. The blood tests for erhlichiosis are

> > > > considered

> > > > > accurate & I tested negative for that. I tested negative

> for

> > > > > bartonella, but my LLMD says that none of his patients has

> ever

> > > > > tested positive for bartonella or babesia – he thinks the

> > > current

> > > > > blood test for those illnesses are not responsive to the

> > species

> > > in

> > > > > this region. He prescribes for those illnesses based on

> > > symptoms &

> > > > > didn't think I had babesia. He did prescribe rifampin for

> > bart,

> > > > but

> > > > > I tried twice & could not get past the 3rd pill, it made me

> so

> > > > sick.

> > > > > So he had me take 6 – 8 weeks of cipro. It made no

> difference

> > > in

> > > > my

> > > > > symptoms.

> > > > >

> > > > > My SPECT & PET Scans at Columbia, though, were consistent

> with

> > > Lyme

> > > > > Disease – the patterns of vasculitis & hypoperfusion of

> blood

> > in

> > > > the

> > > > > brain were heterogenous & diffuse.

> > > > >

> > > > > The tick that bit me in June 5, 2003 was a lonestar tick.

> Dr

> > Ed

> > > > > Masters, whose work first caused the CDC to recognize

> borrelia

> > > > > lonestai, published an article in April 2005 arguing that

> the

> > > > > symptoms after a tick bite in the people he studied in MO

> were

> > > not

> > > > > caused by borrelia burgdorferi or borrelia lonestari, as

> he'd

> > > > > previously argued, but by an unknown pathogen. He did PCRs

> of

> > > the

> > > > > blood of patients who had all the Lyme/STARI symptoms,

> > including

> > > > the

> > > > > bullseye rash, but did not find evidence of either

> spirochete

> > > > > present. So he's still investigating what it is down here.

> > > > >

> > > > > I donated some of my blood & enrolled in a study at

> University

> > > of

> > > > > Texas that is trying to create a blood test for borrelia

> > > > lonestari.

> > > > > The Director of University of Texas's Lyme Disease Research

> Lab

> > > > first

> > > > > said he found " something " in my blood that caused 2

positive

> > > bands

> > > > on

> > > > > his test, but then re-tested and decided it was not

positive

> > for

> > > > > borrelia bacteria DNA. He didn't know what it was that

> caused

> > > the

> > > > > positive bands. Then this summer, we sent him a tick I

> pulled

> > > off

> > > > of

> > > > > my husband. He telephoned & told me it was positive for

> > > borrelia

> > > > > bacteria, so my husband started on abx. A week later, the

> > > Director

> > > > > called back & said they re-tested, and it had been a false

> > > > positive.

> > > > > So SOMETHING down south is related enough to borrelia

> bacteria

> > > that

> > > > > it causes some positive bands -- and causes the same

> symptoms

> > in

> > > > > humans -- but it either is a species of borrelia not yet

> > > > identified,

> > > > > or it is not borrelia at all. It just makes the whole

> ordeal

> > > even

> > > > > more confusing.

> > > > >

> > > > > And the big question all this leaves me with is, Do I keep

> > > taking

> > > > > antibiotics?

> > > > >

> > > > > I'm particularly confused about what is happening after

> going

> > > off

> > > > > rocephin. The positive effect is that my thinking &

> analyzing

> > > > > ability feels pre-tick-bite normal. So I'm happy about

that

> &

> > > > don't

> > > > > want to lose that ground by staying off abx.

> > > > >

> > > > > On the other hand, parasthesias in my arms, legs, feet,

> hands &

> > > > head

> > > > > were part of my symptoms post-tick-bite & pre-abx in 2003,

> but

> > > I've

> > > > > not had them since summer of 2004, after going off of

> flagyl.

> > > If

> > > > > this is a relapse, then I have relapsed much farther back

> than

> > I

> > > > was

> > > > > when I started rocephin.

> > > > >

> > > > > On the other hand, I felt significant swelling in my head

> > during

> > > > the

> > > > > weeks I was on rocephin. I remember Tom Grier posting an

> > > article

> > > > > warning about the brain swelling on rocephin – I tried some

> of

> > > his

> > > > > suggestions to minimize that. But, I wonder if these

> > > parathesias

> > > > > could be due to contracting of the brain after withdrawal

of

> > the

> > > > > rocephin, rather than due to a relapse?

> > > > >

> > > > > Tempe

[Guest guest]

Jill

Reading that brought something to mind, I had a blood smear done at

one of our leading city labs (I can't remember what it was for), I

recall having a pretty good talk with the pathologist and the second

time I found it difficult to get back to him.

Anyways the moral of the story was I thought SCREW IT!! I'll make a

nuisance of myself regardless the outcome- I'm going to get some

satisfaction even if I burn bridges. Thinking asif (lebanese

supermodel) I'm going to request this lab again. I had a choice of 4

path labs and would direct my tests to the one I felt comfortable

with.In australia a request from one lab is honoured by other labs.

So if you feel the outcome isn't going to go your way just push hard

and get people to jump a little for you, it does happen beleive me.

Again Jill most pathologists LOVE going wow check this out to all

there surrounding staff members. I have actually been in a

microscope parasite hunt at the lab and when this chinese girl found

it she was a hero and everyone had to check it out.

Jill

> > > > > Hi there, I thought Ed Masters had just published a paper

on

> > > > > lonestari...I thought it had finally been acknowledged?

Now

> he

> > > > feels

> > > > > there is something else? I'm confused. I thought it was

the

> > CDC

> > > > that

> > > > > kept harrassing him and saying it wasn't bb so it

> > wasn't " lyme " ,

> > > > > idiotic crap.

> > > > >

> > > > > I don't think babesia is too common down there, its

epidemic

> > > where

> > > > I

> > > > > got bit in Connecticut, and is the thing that has done me

in,

> > > > moreso

> > > > > than lyme, I believe. I'm still waiting for the thick/thin

> > blood

> > > > > smear although my fish test was positive--I had my blood

> drawn

> > 8

> > > > days

> > > > > ago and the head pathologist agreed to look at it, and it

was

> > > > right

> > > > > across the street, but the HMO cares SO LITTLE that I had

to

> > call

> > > > > Friday, and talk to 4 different people, " What's your name?

> > Who's

> > > > your

> > > > > doctor? " and finally, " No tests back yet, we'll call you

> back "

> > > and

> > > > > then later, " Yes, tests back, we'll put them in his folder

> and

> > > > he'll

> > > > > call you. " Lovely.

> > > > >

> > > > > Anyway. My memory about rocephin which could be wrong? is

> that

> > > the

> > > > > MIC is not so great...people seem to relapse off it

> > anecdotally

> > > > but I

> > > > > don' tknow a lot about it.

> > > > >

> > > > > >

> > > > > > Thank you so much for your comment. Your point is one

of

> > the

> > > > > reasons

> > > > > > that I want so much to wean off abx – what if it is an

> > > arbovirus

> > > > > > causing my continuing symptoms? Then abx won't help &

may

> > > > actually

> > > > > > suppress my own immune system's ability to control it.

> Yet,

> > if

> > > > it

> > > > > IS

> > > > > > a borrelia bacteria, or bartonella, or babesia, it will

> > worsen

> > > > if I

> > > > > > DON'T take abx. So I have had to gamble that it is one

or

> > more

> > > > of

> > > > > > the bacterias causing the infection & constant

> inflammation,

> > > > rather

> > > > > > than one or more of the viruses.

> > > > > >

> > > > > > I live in the South. The blood tests for erhlichiosis

are

> > > > > considered

> > > > > > accurate & I tested negative for that. I tested

negative

> > for

> > > > > > bartonella, but my LLMD says that none of his patients

has

> > ever

> > > > > > tested positive for bartonella or babesia – he thinks

the

> > > > current

> > > > > > blood test for those illnesses are not responsive to the

> > > species

> > > > in

> > > > > > this region. He prescribes for those illnesses based on

> > > > symptoms &

> > > > > > didn't think I had babesia. He did prescribe rifampin

for

> > > bart,

> > > > > but

> > > > > > I tried twice & could not get past the 3rd pill, it made

me

> > so

> > > > > sick.

> > > > > > So he had me take 6 – 8 weeks of cipro. It made no

> > difference

> > > > in

> > > > > my

> > > > > > symptoms.

> > > > > >

> > > > > > My SPECT & PET Scans at Columbia, though, were

consistent

> > with

> > > > Lyme

> > > > > > Disease – the patterns of vasculitis & hypoperfusion of

> > blood

> > > in

> > > > > the

> > > > > > brain were heterogenous & diffuse.

> > > > > >

> > > > > > The tick that bit me in June 5, 2003 was a lonestar

tick.

> > Dr

> > > Ed

> > > > > > Masters, whose work first caused the CDC to recognize

> > borrelia

> > > > > > lonestai, published an article in April 2005 arguing

that

> > the

> > > > > > symptoms after a tick bite in the people he studied in

MO

> > were

> > > > not

> > > > > > caused by borrelia burgdorferi or borrelia lonestari, as

> > he'd

> > > > > > previously argued, but by an unknown pathogen. He did

PCRs

> > of

> > > > the

> > > > > > blood of patients who had all the Lyme/STARI symptoms,

> > > including

> > > > > the

> > > > > > bullseye rash, but did not find evidence of either

> > spirochete

> > > > > > present. So he's still investigating what it is down

here.

> > > > > >

> > > > > > I donated some of my blood & enrolled in a study at

> > University

> > > > of

> > > > > > Texas that is trying to create a blood test for borrelia

> > > > > lonestari.

> > > > > > The Director of University of Texas's Lyme Disease

Research

> > Lab

> > > > > first

> > > > > > said he found " something " in my blood that caused 2

> positive

> > > > bands

> > > > > on

> > > > > > his test, but then re-tested and decided it was not

> positive

> > > for

> > > > > > borrelia bacteria DNA. He didn't know what it was that

> > caused

> > > > the

> > > > > > positive bands. Then this summer, we sent him a tick I

> > pulled

> > > > off

> > > > > of

> > > > > > my husband. He telephoned & told me it was positive for

> > > > borrelia

> > > > > > bacteria, so my husband started on abx. A week later,

the

> > > > Director

> > > > > > called back & said they re-tested, and it had been a

false

> > > > > positive.

> > > > > > So SOMETHING down south is related enough to borrelia

> > bacteria

> > > > that

> > > > > > it causes some positive bands -- and causes the same

> > symptoms

> > > in

> > > > > > humans -- but it either is a species of borrelia not yet

> > > > > identified,

> > > > > > or it is not borrelia at all. It just makes the whole

> > ordeal

> > > > even

> > > > > > more confusing.

> > > > > >

> > > > > > And the big question all this leaves me with is, Do I

keep

> > > > taking

> > > > > > antibiotics?

> > > > > >

> > > > > > I'm particularly confused about what is happening after

> > going

> > > > off

> > > > > > rocephin. The positive effect is that my thinking &

> > analyzing

> > > > > > ability feels pre-tick-bite normal. So I'm happy about

> that

> > &

> > > > > don't

> > > > > > want to lose that ground by staying off abx.

> > > > > >

> > > > > > On the other hand, parasthesias in my arms, legs, feet,

> > hands &

> > > > > head

> > > > > > were part of my symptoms post-tick-bite & pre-abx in

2003,

> > but

> > > > I've

> > > > > > not had them since summer of 2004, after going off of

> > flagyl.

> > > > If

> > > > > > this is a relapse, then I have relapsed much farther

back

> > than

> > > I

> > > > > was

> > > > > > when I started rocephin.

> > > > > >

> > > > > > On the other hand, I felt significant swelling in my

head

> > > during

> > > > > the

> > > > > > weeks I was on rocephin. I remember Tom Grier posting

an

> > > > article

> > > > > > warning about the brain swelling on rocephin – I tried

some

> > of

> > > > his

> > > > > > suggestions to minimize that. But, I wonder if these

> > > > parathesias

> > > > > > could be due to contracting of the brain after

withdrawal

> of

> > > the

> > > > > > rocephin, rather than due to a relapse?

> > > > > >

> > > > > > Tempe

[Guest guest]

I will say though that it is different in Oz, Tony. My ex--a doc--

used to say that America has the top 5% in terms of medicine, and the

rest is just horrible, worse than any other first world country. He

was constantly fielding " personal " phone calls from friends or

friends of friends here, with illnesses or sick relatives, who needed

advice; his advice was often different than what they were getting

and he was usually right. They'd be so stupid as to miss a

potentially fatal pneumonia in an elderly patient (miss the symptoms)

which he could diagnose OVER THE PHONE....

And so in just 2 days in Oz he could getall his checkups, no waiting.

He also noticed that every American lived with the terror of someday

being homeless no matter how much $ they had. For two reasons, one,

we aren't protected (in Australia, the govt will give you enuf $ to

live decently even if you don't work or are old), and two, medicine

is not socialized so if you get sick, you may go bankrupt. Like my

elderly neighbor who is fairly wealthy by my standards, and she lives

in fear that if she has a recurrence of cancer she will go bankrupt

paying for the chemo, because Medicare doesn't pay.

Anyway, I'll see what the blood test says, it should be interesting!

> > > > > > Hi there, I thought Ed Masters had just published a paper

> on

> > > > > > lonestari...I thought it had finally been acknowledged?

> Now

> > he

> > > > > feels

> > > > > > there is something else? I'm confused. I thought it was

> the

> > > CDC

> > > > > that

> > > > > > kept harrassing him and saying it wasn't bb so it

> > > wasn't " lyme " ,

> > > > > > idiotic crap.

> > > > > >

> > > > > > I don't think babesia is too common down there, its

> epidemic

> > > > where

> > > > > I

> > > > > > got bit in Connecticut, and is the thing that has done me

> in,

> > > > > moreso

> > > > > > than lyme, I believe. I'm still waiting for the

thick/thin

> > > blood

> > > > > > smear although my fish test was positive--I had my blood

> > drawn

> > > 8

> > > > > days

> > > > > > ago and the head pathologist agreed to look at it, and it

> was

> > > > > right

> > > > > > across the street, but the HMO cares SO LITTLE that I had

> to

> > > call

> > > > > > Friday, and talk to 4 different people, " What's your

name?

> > > Who's

> > > > > your

> > > > > > doctor? " and finally, " No tests back yet, we'll call you

> > back "

> > > > and

> > > > > > then later, " Yes, tests back, we'll put them in his

folder

> > and

> > > > > he'll

> > > > > > call you. " Lovely.

> > > > > >

> > > > > > Anyway. My memory about rocephin which could be wrong? is

> > that

> > > > the

> > > > > > MIC is not so great...people seem to relapse off it

> > > anecdotally

> > > > > but I

> > > > > > don' tknow a lot about it.

> > > > > >

> > > > > > >

> > > > > > > Thank you so much for your comment. Your point is one

> of

> > > the

> > > > > > reasons

> > > > > > > that I want so much to wean off abx – what if it is an

> > > > arbovirus

> > > > > > > causing my continuing symptoms? Then abx won't help &

> may

> > > > > actually

> > > > > > > suppress my own immune system's ability to control it.

> > Yet,

> > > if

> > > > > it

> > > > > > IS

> > > > > > > a borrelia bacteria, or bartonella, or babesia, it will

> > > worsen

> > > > > if I

> > > > > > > DON'T take abx. So I have had to gamble that it is one

> or

> > > more

> > > > > of

> > > > > > > the bacterias causing the infection & constant

> > inflammation,

> > > > > rather

> > > > > > > than one or more of the viruses.

> > > > > > >

> > > > > > > I live in the South. The blood tests for erhlichiosis

> are

> > > > > > considered

> > > > > > > accurate & I tested negative for that. I tested

> negative

> > > for

> > > > > > > bartonella, but my LLMD says that none of his patients

> has

> > > ever

> > > > > > > tested positive for bartonella or babesia – he thinks

> the

> > > > > current

> > > > > > > blood test for those illnesses are not responsive to

the

> > > > species

> > > > > in

> > > > > > > this region. He prescribes for those illnesses based

on

> > > > > symptoms &

> > > > > > > didn't think I had babesia. He did prescribe rifampin

> for

> > > > bart,

> > > > > > but

> > > > > > > I tried twice & could not get past the 3rd pill, it

made

> me

> > > so

> > > > > > sick.

> > > > > > > So he had me take 6 – 8 weeks of cipro. It made no

> > > difference

> > > > > in

> > > > > > my

> > > > > > > symptoms.

> > > > > > >

> > > > > > > My SPECT & PET Scans at Columbia, though, were

> consistent

> > > with

> > > > > Lyme

> > > > > > > Disease – the patterns of vasculitis & hypoperfusion of

> > > blood

> > > > in

> > > > > > the

> > > > > > > brain were heterogenous & diffuse.

> > > > > > >

> > > > > > > The tick that bit me in June 5, 2003 was a lonestar

> tick.

> > > Dr

> > > > Ed

> > > > > > > Masters, whose work first caused the CDC to recognize

> > > borrelia

> > > > > > > lonestai, published an article in April 2005 arguing

> that

> > > the

> > > > > > > symptoms after a tick bite in the people he studied in

> MO

> > > were

> > > > > not

> > > > > > > caused by borrelia burgdorferi or borrelia lonestari,

as

> > > he'd

> > > > > > > previously argued, but by an unknown pathogen. He did

> PCRs

> > > of

> > > > > the

> > > > > > > blood of patients who had all the Lyme/STARI symptoms,

> > > > including

> > > > > > the

> > > > > > > bullseye rash, but did not find evidence of either

> > > spirochete

> > > > > > > present. So he's still investigating what it is down

> here.

> > > > > > >

> > > > > > > I donated some of my blood & enrolled in a study at

> > > University

> > > > > of

> > > > > > > Texas that is trying to create a blood test for

borrelia

> > > > > > lonestari.

> > > > > > > The Director of University of Texas's Lyme Disease

> Research

> > > Lab

> > > > > > first

> > > > > > > said he found " something " in my blood that caused 2

> > positive

> > > > > bands

> > > > > > on

> > > > > > > his test, but then re-tested and decided it was not

> > positive

> > > > for

> > > > > > > borrelia bacteria DNA. He didn't know what it was that

> > > caused

> > > > > the

> > > > > > > positive bands. Then this summer, we sent him a tick I

> > > pulled

> > > > > off

> > > > > > of

> > > > > > > my husband. He telephoned & told me it was positive

for

> > > > > borrelia

> > > > > > > bacteria, so my husband started on abx. A week later,

> the

> > > > > Director

> > > > > > > called back & said they re-tested, and it had been a

> false

> > > > > > positive.

> > > > > > > So SOMETHING down south is related enough to borrelia

> > > bacteria

> > > > > that

> > > > > > > it causes some positive bands -- and causes the same

> > > symptoms

> > > > in

> > > > > > > humans -- but it either is a species of borrelia not

yet

> > > > > > identified,

> > > > > > > or it is not borrelia at all. It just makes the whole

> > > ordeal

> > > > > even

> > > > > > > more confusing.

> > > > > > >

> > > > > > > And the big question all this leaves me with is, Do I

> keep

> > > > > taking

> > > > > > > antibiotics?

> > > > > > >

> > > > > > > I'm particularly confused about what is happening after

> > > going

> > > > > off

> > > > > > > rocephin. The positive effect is that my thinking &

> > > analyzing

> > > > > > > ability feels pre-tick-bite normal. So I'm happy about

> > that

> > > &

> > > > > > don't

> > > > > > > want to lose that ground by staying off abx.

> > > > > > >

> > > > > > > On the other hand, parasthesias in my arms, legs, feet,

> > > hands &

> > > > > > head

> > > > > > > were part of my symptoms post-tick-bite & pre-abx in

> 2003,

> > > but

> > > > > I've

> > > > > > > not had them since summer of 2004, after going off of

> > > flagyl.

> > > > > If

> > > > > > > this is a relapse, then I have relapsed much farther

> back

> > > than

> > > > I

> > > > > > was

> > > > > > > when I started rocephin.

> > > > > > >

> > > > > > > On the other hand, I felt significant swelling in my

> head

> > > > during

> > > > > > the

> > > > > > > weeks I was on rocephin. I remember Tom Grier posting

> an

> > > > > article

> > > > > > > warning about the brain swelling on rocephin – I tried

> some

> > > of

> > > > > his

> > > > > > > suggestions to minimize that. But, I wonder if these

> > > > > parathesias

> > > > > > > could be due to contracting of the brain after

> withdrawal

> > of

> > > > the

> > > > > > > rocephin, rather than due to a relapse?

> > > > > > >

> > > > > > > Tempe

[Guest guest]

" jill1313 " <jenbooks13@h...> wrote:

> wormser & Masters together...my head is falling apart .

> Can you email me a PDF of the study if you have it?

> jenbooks13@h...

I had my husband scan my hard copy & create a pdf file, so I can email

it to you now. When I try from within the Group, it won't let me

attach something, so send me your full email address, and I'll be happy

to email it.

If anyone else would like a copy, let me know.

Tempe

[Guest guest]

<jenbooks13@h...> wrote:

> wormser & Masters together...my head is falling apart .

> Can you email me a PDF of the study if you have it?

Ok, I found the link to your email address. I think it's on its way.

[Guest guest]

<jenbooks13@h...> wrote:

> wormser & Masters together...my head is falling apart .

> Can you email me a PDF of the study if you have it?

Ok, I found the link to your email address. I think it's on its way.

[Guest guest]

Jill

Try convincing cfs patients that there doctors are missing something

and they bite your head off.What alway's pissed me of was the nurse

could tell you looked unwell,citing the grey in colour appearance

and sitting you in front of her just in case the situation got

acute.Then you get the doc who is trying to do everything to prove

your fine and you don't need any treatment.

It all sucked and having insurance and the best care means squat.I

no longer know where this is going so I'm bailing out early. tony

> > > > > > > Hi there, I thought Ed Masters had just published a

paper

> > on

> > > > > > > lonestari...I thought it had finally been

acknowledged?

> > Now

> > > he

> > > > > > feels

> > > > > > > there is something else? I'm confused. I thought it

was

> > the

> > > > CDC

> > > > > > that

> > > > > > > kept harrassing him and saying it wasn't bb so it

> > > > wasn't " lyme " ,

> > > > > > > idiotic crap.

> > > > > > >

> > > > > > > I don't think babesia is too common down there, its

> > epidemic

> > > > > where

> > > > > > I

> > > > > > > got bit in Connecticut, and is the thing that has done

me

> > in,

> > > > > > moreso

> > > > > > > than lyme, I believe. I'm still waiting for the

> thick/thin

> > > > blood

> > > > > > > smear although my fish test was positive--I had my

blood

> > > drawn

> > > > 8

> > > > > > days

> > > > > > > ago and the head pathologist agreed to look at it, and

it

> > was

> > > > > > right

> > > > > > > across the street, but the HMO cares SO LITTLE that I

had

> > to

> > > > call

> > > > > > > Friday, and talk to 4 different people, " What's your

> name?

> > > > Who's

> > > > > > your

> > > > > > > doctor? " and finally, " No tests back yet, we'll call

you

> > > back "

> > > > > and

> > > > > > > then later, " Yes, tests back, we'll put them in his

> folder

> > > and

> > > > > > he'll

> > > > > > > call you. " Lovely.

> > > > > > >

> > > > > > > Anyway. My memory about rocephin which could be wrong?

is

> > > that

> > > > > the

> > > > > > > MIC is not so great...people seem to relapse off it

> > > > anecdotally

> > > > > > but I

> > > > > > > don' tknow a lot about it.

> > > > > > >

> > > > > > > >

> > > > > > > > Thank you so much for your comment. Your point is

one

> > of

> > > > the

> > > > > > > reasons

> > > > > > > > that I want so much to wean off abx – what if it is

an

> > > > > arbovirus

> > > > > > > > causing my continuing symptoms? Then abx won't help

&

> > may

> > > > > > actually

> > > > > > > > suppress my own immune system's ability to control

it.

> > > Yet,

> > > > if

> > > > > > it

> > > > > > > IS

> > > > > > > > a borrelia bacteria, or bartonella, or babesia, it

will

> > > > worsen

> > > > > > if I

> > > > > > > > DON'T take abx. So I have had to gamble that it is

one

> > or

> > > > more

> > > > > > of

> > > > > > > > the bacterias causing the infection & constant

> > > inflammation,

> > > > > > rather

> > > > > > > > than one or more of the viruses.

> > > > > > > >

> > > > > > > > I live in the South. The blood tests for

erhlichiosis

> > are

> > > > > > > considered

> > > > > > > > accurate & I tested negative for that. I tested

> > negative

> > > > for

> > > > > > > > bartonella, but my LLMD says that none of his

patients

> > has

> > > > ever

> > > > > > > > tested positive for bartonella or babesia – he

thinks

> > the

> > > > > > current

> > > > > > > > blood test for those illnesses are not responsive to

> the

> > > > > species

> > > > > > in

> > > > > > > > this region. He prescribes for those illnesses

based

> on

> > > > > > symptoms &

> > > > > > > > didn't think I had babesia. He did prescribe

rifampin

> > for

> > > > > bart,

> > > > > > > but

> > > > > > > > I tried twice & could not get past the 3rd pill, it

> made

> > me

> > > > so

> > > > > > > sick.

> > > > > > > > So he had me take 6 – 8 weeks of cipro. It made no

> > > > difference

> > > > > > in

> > > > > > > my

> > > > > > > > symptoms.

> > > > > > > >

> > > > > > > > My SPECT & PET Scans at Columbia, though, were

> > consistent

> > > > with

> > > > > > Lyme

> > > > > > > > Disease – the patterns of vasculitis & hypoperfusion

of

> > > > blood

> > > > > in

> > > > > > > the

> > > > > > > > brain were heterogenous & diffuse.

> > > > > > > >

> > > > > > > > The tick that bit me in June 5, 2003 was a lonestar

> > tick.

> > > > Dr

> > > > > Ed

> > > > > > > > Masters, whose work first caused the CDC to

recognize

> > > > borrelia

> > > > > > > > lonestai, published an article in April 2005 arguing

> > that

> > > > the

> > > > > > > > symptoms after a tick bite in the people he studied

in

> > MO

> > > > were

> > > > > > not

> > > > > > > > caused by borrelia burgdorferi or borrelia

lonestari,

> as

> > > > he'd

> > > > > > > > previously argued, but by an unknown pathogen. He

did

> > PCRs

> > > > of

> > > > > > the

> > > > > > > > blood of patients who had all the Lyme/STARI

symptoms,

> > > > > including

> > > > > > > the

> > > > > > > > bullseye rash, but did not find evidence of either

> > > > spirochete

> > > > > > > > present. So he's still investigating what it is

down

> > here.

> > > > > > > >

> > > > > > > > I donated some of my blood & enrolled in a study at

> > > > University

> > > > > > of

> > > > > > > > Texas that is trying to create a blood test for

> borrelia

> > > > > > > lonestari.

> > > > > > > > The Director of University of Texas's Lyme Disease

> > Research

> > > > Lab

> > > > > > > first

> > > > > > > > said he found " something " in my blood that caused 2

> > > positive

> > > > > > bands

> > > > > > > on

> > > > > > > > his test, but then re-tested and decided it was not

> > > positive

> > > > > for

> > > > > > > > borrelia bacteria DNA. He didn't know what it was

that

> > > > caused

> > > > > > the

> > > > > > > > positive bands. Then this summer, we sent him a

tick I

> > > > pulled

> > > > > > off

> > > > > > > of

> > > > > > > > my husband. He telephoned & told me it was positive

> for

> > > > > > borrelia

> > > > > > > > bacteria, so my husband started on abx. A week

later,

> > the

> > > > > > Director

> > > > > > > > called back & said they re-tested, and it had been a

> > false

> > > > > > > positive.

> > > > > > > > So SOMETHING down south is related enough to

borrelia

> > > > bacteria

> > > > > > that

> > > > > > > > it causes some positive bands -- and causes the same

> > > > symptoms

> > > > > in

> > > > > > > > humans -- but it either is a species of borrelia not

> yet

> > > > > > > identified,

> > > > > > > > or it is not borrelia at all. It just makes the

whole

> > > > ordeal

> > > > > > even

> > > > > > > > more confusing.

> > > > > > > >

> > > > > > > > And the big question all this leaves me with is, Do

I

> > keep

> > > > > > taking

> > > > > > > > antibiotics?

> > > > > > > >

> > > > > > > > I'm particularly confused about what is happening

after

> > > > going

> > > > > > off

> > > > > > > > rocephin. The positive effect is that my thinking &

> > > > analyzing

> > > > > > > > ability feels pre-tick-bite normal. So I'm happy

about

> > > that

> > > > &

> > > > > > > don't

> > > > > > > > want to lose that ground by staying off abx.

> > > > > > > >

> > > > > > > > On the other hand, parasthesias in my arms, legs,

feet,

> > > > hands &

> > > > > > > head

> > > > > > > > were part of my symptoms post-tick-bite & pre-abx in

> > 2003,

> > > > but

> > > > > > I've

> > > > > > > > not had them since summer of 2004, after going off

of

> > > > flagyl.

> > > > > > If

> > > > > > > > this is a relapse, then I have relapsed much farther

> > back

> > > > than

> > > > > I

> > > > > > > was

> > > > > > > > when I started rocephin.

> > > > > > > >

> > > > > > > > On the other hand, I felt significant swelling in my

> > head

> > > > > during

> > > > > > > the

> > > > > > > > weeks I was on rocephin. I remember Tom Grier

posting

> > an

> > > > > > article

> > > > > > > > warning about the brain swelling on rocephin – I

tried

> > some

> > > > of

> > > > > > his

> > > > > > > > suggestions to minimize that. But, I wonder if

these

> > > > > > parathesias

> > > > > > > > could be due to contracting of the brain after

> > withdrawal

> > > of

> > > > > the

> > > > > > > > rocephin, rather than due to a relapse?

> > > > > > > >

> > > > > > > > Tempe