Re: lyme test results from Igenex

[Guest guest]

Thank you !!! True, if it acts like lyme, tests #41 is positive...this

is exactly the ONLY band I had....I ended up deathly ill.

Get the meds., hope you are seeing a good LLMD, you have quite a few right

around you.

Need any info? ask.

sue in nj

sue massie

[Guest guest]

But my IgG western blot was positive on 6

> bands; # 28, 39, 41, 45, 58, 66. Number 41 was triple positive.

> Babesia and Ehlrichia tests showed low-equivicol results.

You have Lyme, no doubt about it. Band 41 is the first band to show up. Here

is what the other bands mean

28= unknown

39= Major Protein of Bb Flagellin, specific for Bb ( Bb is Borrelia

Burgdorferi , the Lyme Spirochetes scientific name)

41= Flagellin protein of all spirochetes, usually the first to show up

45=Cross reactive for all Borrelia

58= Unknown

66=Cross reactive for all Borrelia, common in all bacteria

Even though you may not be CDC positive, you are still positive for Lyme.

Testing sucks, its nothing to not test positive for years. Good luck with

treatment!! You'll beat this now that you know what is wrong. Take care,

[Guest guest]

Dear ,

Welcome to " the club. " Dubious distinction, but VERY good company!

(VBG!)

Seems to me I read somewhere that unlike Epstein-Barr virus (have

tons of info on this - email privately if interested in this as

respects immune system), BABESIA & EHRLICHIA are not organisms that

one would " normall " show any exposure / immunity to.

One of our dogs was VERY ILL - I just knew in my heart it was

ehrlichia - after extended arguments with vets, they finally agreed

to send tests to the equivalent lab for animals (U of IL - Dr.

Kakoma) & SURE ENOUGH - POSITIVE, but only at 1:20. If this wasn't

significant, they wouldn't run the titres down this low.

We found that clindamycin is used in dogs with babesia, so we had

human doc RX with flagyl (anti-protazoan, although most MDs & vets

will swear up & down it is ineffective for babesia...) We thought it

well worth a try & sure enough, after about 8 wks on this, no more

anemia... Shakiness / temp changes / night sweats, etc. GONE -

permanently. Not saying you should go this route, but our pharmacist

looked up mepron & told us she would NEVER take it - it's an AIDS

drug known to cause cancer...

Blessings,

Chris

We've also found that " alternative " approaches actually gave us lives

back. Abxs only seemed to suppress organisms - just my opinion from

personal experience; knowledge of K-9 PCR results (30,

>

> hi; my lyme igenex test results came back recently. my LDA was

> negative on all 3 samples. But my IgG western blot was positive on

6

> bands; # 28, 39, 41, 45, 58, 66. Number 41 was triple positive.

> Babesia and Ehlrichia tests showed low-equivicol results. (1:40

> ehlrichia; 1:20 babesia. I've been dx with fibromyalgia, CFS, and

> depression many times but no doctor on my HMO ever said anything

> about lyme; I had 2 antibody tests run over the last 3 years which

> both came out negative. I've had no bullseye rash and live in Los

> Angeles. Needless to say I'm really excited!! was totally

expecting

> negative test results. but trying to stay neutral since my hopes

> have been raised and shattered too many times in the past by well

> meaning doctors (and fellow patients) who believed too strongly in

> their treatment plans and were just positive that I'd be better

after

> some treatment regimine.

> Despite lots of research I still dont know how reliable the Igenex

> western blot is. Does anyone know? Like with these results what

are

> the odds I truly have lyme?

> 50%? 80%?. I did the western blot after my week of antibiotics and

> the LDA; which my LLMD said was ok. She actually advised me to do

it

> in the middle of that week of antibiotics but I wasnt able to so

had

> to wait till the next week. This wouldnt screw up the results of

the

> western blot would it? doing it after those antibiotics that is.

> My main symptoms are full body joint stiffness (symetrical), eye

> soreness (symetrical), constant fatigue, adrenal exhaustion,

extreme

> lethargy, neuro-psychiatric problems, cracking joints; eye lid

> twitching, and I dont " crash " like everyone else I know with CFS.

Its

> gotten worse steadily from age 13 to 23; like some agent(s) in my

> system was slowly getting more powerfull and wreaking more havok

each

> successive month. My comprehensive thyroid tests came out normal.

> The only other abnormal tests have been high mercury/uranium in my

> hair test (both 3 times ref range), low killer cell count, and

> slightly elevated liver enzymes. Besides the heavy metals which I

> should be chelating shortly the other things have been dealt with

by

> my holistic doctor in the last 2 years like nutrient deficiencies,

> detox, diet, and stress. (A side note...these have helped greatly;

> especially malic acid/magnesium suplementation, B-complex, vit C,

> adrenal suport products and detox supplements; many from Standard

> process. There is still a major part of my illness not being

> addressed however.)

> Some other questions that are going through my head are; should I

get

> the ISAC panel done before doing an antibiotics trial? If

> antibiotics get me 60% better but I have to stay on them to

maintain

> that level of functioning (something I've seen often in long term

> lyme patients I've come across; some being on abx for many years)

is

> that worth it with the effects to gut and immune system? Are there

> certain antibiotics to avoid if mycoplasmas are involved? (highly

> likely in my case). I remember someone saying to avoid those in

the

> penicillin family if you have mycoplasmas. There's a lot going on

in

> my head right now. my Lyme doctor is going to call me on Monday or

> Tuesday to formulate a plan of action and part of the plan will be

> based on my own choices since there's so many ways to approach

> fibro/CFS/lyme if you've been sick for several years. I did about

6

> days of flagyl for the tests and this did provide slight

improvement

> of my symptoms; the neuro-psychiatric ones most noticeably. I'm

> guessing that flagyl will be one thing we start with.

> Any advice greatly appreciated.

> ; 25; M; Los Angeles

[Guest guest]

Sorry - last message sent before done (using laptop)...

dogs - 30, 60, 90, 120 days post- very high dose doxy long-term (6

mos+), organisms in full function again. (no reinfection & I do

realize we are not K-9s (LOL!), but we had exact same thing happen -

relapse at 90 days off abxs... (This, personally, to me is not

an " answer " - but a " band aid " fix.)

Check into NST - listed in messages - fabulous! Balance is so

important in the healing process. Body must be functioning in

balance & correctly before any real healing can occur...

>

> hi; my lyme igenex test results came back recently. my LDA was

> negative on all 3 samples. But my IgG western blot was positive on

6

> bands; # 28, 39, 41, 45, 58, 66. Number 41 was triple positive.

> Babesia and Ehlrichia tests showed low-equivicol results. (1:40

> ehlrichia; 1:20 babesia. I've been dx with fibromyalgia, CFS, and

> depression many times but no doctor on my HMO ever said anything

> about lyme; I had 2 antibody tests run over the last 3 years which

> both came out negative. I've had no bullseye rash and live in Los

> Angeles. Needless to say I'm really excited!! was totally

expecting

> negative test results. but trying to stay neutral since my hopes

> have been raised and shattered too many times in the past by well

> meaning doctors (and fellow patients) who believed too strongly in

> their treatment plans and were just positive that I'd be better

after

> some treatment regimine.

> Despite lots of research I still dont know how reliable the Igenex

> western blot is. Does anyone know? Like with these results what

are

> the odds I truly have lyme?

> 50%? 80%?. I did the western blot after my week of antibiotics and

> the LDA; which my LLMD said was ok. She actually advised me to do

it

> in the middle of that week of antibiotics but I wasnt able to so

had

> to wait till the next week. This wouldnt screw up the results of

the

> western blot would it? doing it after those antibiotics that is.

> My main symptoms are full body joint stiffness (symetrical), eye

> soreness (symetrical), constant fatigue, adrenal exhaustion,

extreme

> lethargy, neuro-psychiatric problems, cracking joints; eye lid

> twitching, and I dont " crash " like everyone else I know with CFS.

Its

> gotten worse steadily from age 13 to 23; like some agent(s) in my

> system was slowly getting more powerfull and wreaking more havok

each

> successive month. My comprehensive thyroid tests came out normal.

> The only other abnormal tests have been high mercury/uranium in my

> hair test (both 3 times ref range), low killer cell count, and

> slightly elevated liver enzymes. Besides the heavy metals which I

> should be chelating shortly the other things have been dealt with

by

> my holistic doctor in the last 2 years like nutrient deficiencies,

> detox, diet, and stress. (A side note...these have helped greatly;

> especially malic acid/magnesium suplementation, B-complex, vit C,

> adrenal suport products and detox supplements; many from Standard

> process. There is still a major part of my illness not being

> addressed however.)

> Some other questions that are going through my head are; should I

get

> the ISAC panel done before doing an antibiotics trial? If

> antibiotics get me 60% better but I have to stay on them to

maintain

> that level of functioning (something I've seen often in long term

> lyme patients I've come across; some being on abx for many years)

is

> that worth it with the effects to gut and immune system? Are there

> certain antibiotics to avoid if mycoplasmas are involved? (highly

> likely in my case). I remember someone saying to avoid those in

the

> penicillin family if you have mycoplasmas. There's a lot going on

in

> my head right now. my Lyme doctor is going to call me on Monday or

> Tuesday to formulate a plan of action and part of the plan will be

> based on my own choices since there's so many ways to approach

> fibro/CFS/lyme if you've been sick for several years. I did about

6

> days of flagyl for the tests and this did provide slight

improvement

> of my symptoms; the neuro-psychiatric ones most noticeably. I'm

> guessing that flagyl will be one thing we start with.

> Any advice greatly appreciated.

> ; 25; M; Los Angeles

[Guest guest]

Dear Joe,

As soon as my PA LLMD was able to reproduce my FL LLMDs positive Lyme tests

(took me 13 mos) since I know I have had it over 25 years, was dx with FMS

in 1990 and CFS in 1995 and have been on SSDI and LTD since 1996, he

immediately put me on IV Rocephin. I am also taking Doxycycline as I have

Babesia also. I am now starting my 5th week of IV Rocephin out of 6, that

is all my ins will pay for and I think he feels it is adequate, we will see

what happens after that. My FL LLMD used Igenex and my PA LLMD used MDL in

NJ.

I was told that he went straight to IV Rocephin because of my late stage

Lyme position. He was very disappointed in my not being " miraculously "

cured after 4 weeks, since he is an internal medicine doc, perhaps I will

request a referral to an infectious disease doc when I go back in 2 weeks

and he asks what I want to do next. He listens to me, asks my opinion, lets

me know his and then we decide on what to do next, we are a partnership, but

he is the captain since he is the MD. Good luck with your treatment, let us

know how it goes.

Hugs, Michele

----- Original Message -----

From: " joey2276 " Sent: Monday, February 25, 2002 4:24 PM

> Another question: for someone who's had it for 12 or 13 years as I

> have is it best to try oral antibiotics first and see how it goes or

> go straight to IV?

[Guest guest]

Dear ,

You're taking Doxy for babesia? Never heard of this!

We used clindamycin & flagyl. Some use mepron (personally wouldn't

touch this poison with a 10'pole...) with quinine...

Some use artamesia annua (specific variety of wormwood herb).

Is Doxy an anti-protazoan?

Blessings,

Chris

> Dear Joe,

> As soon as my PA LLMD was able to reproduce my FL LLMDs positive

Lyme tests

> (took me 13 mos) since I know I have had it over 25 years, was dx

with FMS

> in 1990 and CFS in 1995 and have been on SSDI and LTD since 1996,

he

> immediately put me on IV Rocephin. I am also taking Doxycycline as

I have

> Babesia also. I am now starting my 5th week of IV Rocephin out of

6, that

> is all my ins will pay for and I think he feels it is adequate, we

will see

> what happens after that. My FL LLMD used Igenex and my PA LLMD

used MDL in

> NJ.

>

> I was told that he went straight to IV Rocephin because of my late

stage

> Lyme position. He was very disappointed in my not

being " miraculously "

> cured after 4 weeks, since he is an internal medicine doc, perhaps

I will

> request a referral to an infectious disease doc when I go back in 2

weeks

> and he asks what I want to do next. He listens to me, asks my

opinion, lets

> me know his and then we decide on what to do next, we are a

partnership, but

> he is the captain since he is the MD. Good luck with your

treatment, let us

> know how it goes.

> Hugs, Michele

> ----- Original Message -----

> From: " joey2276 " Sent: Monday, February 25, 2002 4:24 PM

> > Another question: for someone who's had it for 12 or 13 years as I

> > have is it best to try oral antibiotics first and see how it goes

or

> > go straight to IV?

[Guest guest]

Dear

Doxycycline is an antibiotic and he feels that it kills the bacteria that

keeps the babesia going, I guess. I think I will ask to be referred to an

infectious disease doc when I see him again, more of what he is saying is

making less sense any more. I have a bottle of artamesia annua unopened but

my current LLMD who is only an internal med doc does not believe in

supplements, except for saw palmetto, hehe. Anyone know of a female LLMD in

my area?

Hugs, Michele

----- Original Message -----

From: " synchronicity336 " Sent: Saturday, March 02, 2002 10:59 PM

> You're taking Doxy for babesia? Never heard of this!

>

> We used clindamycin & flagyl. Some use mepron (personally wouldn't

> touch this poison with a 10'pole...) with quinine...

>

> Some use artamesia annua (specific variety of wormwood herb).

>

> Is Doxy an anti-protazoan?

[Guest guest]

,

Doesnt sound like he is a LLMD. Be careful of the infectious disease docs,

too. I have been down that " duck " road. Can't you have someone on here find

you a good LLMD who will stick with you?

NanC

heis1am@...

[Guest guest]

The LLMD I am seeing was referred to me by someone on this list. Perhaps I

need to recheck the list. We may be buying a house soon so that would be a

good " reason " to change doctors. Perhaps people can send me names of known

LLMDs in Pennsylvania, preferably in Lancaster county, but all over the

state would be more probable. My email is mailto:michtown@... Thanks in

advance.

Hugs, Michele

----- Original Message -----

From: <heis1am@...>Sent: Sunday, March 03, 2002 8:00 AM

> Doesnt sound like he is a LLMD. Be careful of the infectious disease

docs,

> too. I have been down that " duck " road. Can't you have someone on here

find

> you a good LLMD who will stick with you?

> NanC