Re: My latest doctor visit

[Guest guest]

Hi Cheryl and all,

I saw my Lyme doctor yesterday and it was one of my best visits

ever....He understands my reasoning for stopping the abx right now.....I

told him I am coming up to my three year anniversary with this dread disease

and this is how I chose to celebrate it...<G>. He told me it could be

possible that I will now sero-convert to positive since I am off abx

now....so my theory wasn't totally all wet. He suggested since I am now

off, that I stay off one more cycle (28 days) to see what happens and how I

feel. The best news is that he has learned of a " Lyme literate " Infectious

disease doctor in the Philadelphia area.....now this is like finding a

needle in a haystack, for years people with Lyme in this area thought there

was no such animal. I have a referral to see him, I need to call to make

the appointment today. I asked my doctor about the LUAT test, and he says

it just is not scientifically proven in his opinion, and besides that not an

insurance acceptable test.

I should back up here and explain to others who are reading this. Three

years into this illness I have perfect labs, I could be poster girl for good

health if you look at my tests. Yes, I was positive for Lyme and HME way

back when, but not now. My body gave up fighting the disease, as the abx

have been doing all the work. Thus I am making no antibodies that show up

in bands on the WB test. Insurance companies (mine,anyway) will not approve

IV meds unless I test positive. On the oral regimen so far, or for the last

year anyway, I have felt pretty bad....worse than ever. I feel like I am

spinning wheels getting nowhere fast. This new Inf. Disease doctor is

recommending a promising diagnostic methodolgy as described in the most

recent " Sixth International Conference on Tick-Borne Disorders and Lyme

disease, " he recommends the use of PCR to detect DNA sequences of Bb in

patient's SERUM samples. My Lyme doctor is very excited about this

possibility, he says he has no idea why this was not considered before, I

thought serum was blood, but it is different than whole blood. I hope

someone with a science or medical background can explain this to me.

Specifically I am to have a serum PCR assay against Bb, as well as

follow-up serum IgG and IgM Western blot antibody testing. Now even if this

comes up negative, I still feel better seeing a Specialist who has a basic

understanding of Lyme testing and it's pitfalls, and I am hoping he will

suggest a more agressive regimen for me, or at least be able to convince

Aetna to put me on IV. Anything is better than seeing my poor harried Lyme

doctor month after month and reporting no changes and still feeling lousy.

I also get fitted for a 24 hour holter monitor tomorrow, hopefully to

determine why I have this awful heart pounding, I read somewhere that the

cure for chest pain, or missed beats is a 24 holter monitor, it miraculousy

stops when you have the test....LOL! At least I feel like I am doing

something now.

I hope you are feeling well, are you enjoying not working or bored to

tears??? Hope you feel better soon, I bet they miss you at work.

Hugs,

Marta NJ

>From: cheryl@...

>

>Steere

>I want that picture, just gotta have it LOL Gettin out my darts already!

>

>I've been, well, better than this that's for sure marta. lol What a mess

things are. How are you doing w/o the antibiotics?

>

>{{HUGS}}

>Cheryl (NY)

[Guest guest]

In a message dated 7/14/99 3:40:09 AM Eastern Daylight Time,

mlmccoy@... writes:

<< I asked my doctor about the LUAT test, and he says

it just is not scientifically proven in his opinion, and besides that not an

insurance acceptable test. >>

us Healthcare supposedly pays for it now....sent out thru their lab partner

Klnie Beecham b

[Guest guest]

In a message dated 7/14/99 3:40:09 AM Eastern Daylight Time,

mlmccoy@... writes:

<< I also get fitted for a 24 hour holter monitor tomorrow, hopefully to

determine why I have this awful heart pounding, I read somewhere that the

cure for chest pain, or missed beats is a 24 holter monitor, it miraculousy

stops when you have the test....LOL! At least I feel like I am doing

something now. >>

maybe Lyme is throwing you into hyperthyroid..autoimmune thyroid can go

either way...any other related symptoms? B

[Guest guest]

Hey, I did not know that....great news, but the problem is, if my current

Lyme doctor and the new Infectious disease guy I plan to see have no faith

in it, what good will it do me???? My Lyme doctor gave me a page from

someone's chart (with their name inked out of course) that was written about

the LUAT by this infectious disease doctor....here is what it says exactly:

Another study frequently evoked, particularly in Central New Jersey, is the

urine Lyme antigen assay. This test is quite controversial, has absolutely

no standardization, and no data to confirm the sensitivity and specificity.

Now do you see why we are all totally confused.....????

Marta

>From: BratDet@...

>>us Healthcare supposedly pays for it now....sent out thru their lab

partner

> Klnie Beecham b

[Guest guest]

Hi Bernadette,

How about fast weight gain? No hair loss, no good Thyroid tests have

been done though. My skin is excessively greasy, this is new, and no idea

why that is happening to me. I printed out your posting from a few days ago

about the stimulating hormone TSH, to take to my doctor he listened, but

felt we should do the holter monitor first, he just doesn't think I have

thyroid problems.

I'll keep you posted.

>From: BratDet@...

>maybe Lyme is throwing you into hyperthyroid..autoimmune thyroid can go

>either way...any other related symptoms? B

[Guest guest]

In a message dated 7/14/99 3:39:56 AM Eastern Daylight Time,

mlmccoy@... writes:

<< my theory wasn't totally all wet. He suggested since I am now

off, that I stay off one more cycle (28 days) to see what happens and how I

feel. The best news is that he has learned of a " Lyme literate " Infectious

disease doctor in the Philadelphia area.....now this is like finding a

needle in a haystack, for years people with Lyme in this area thought there

was no such animal. I have a referral to see him, I need to call to make

the appointment today. I asked my doctor about the LUAT test, and he says

it just is not sc >>

Marta,

Could you please e mail me and tell me the name of the doc in philly. I

would like a second opion and this doc sounds wonderful.

Thanks,

[Guest guest]

Hi Marta,

I am so glad to read that you have found a LL ID specialist! I am seeing

one now, and it has lifted the weight off of my shoulders...not having

to constantly do the research myself anymore. I still read alot about

LD, but the urgency isn't there anymore because this LLMD seems to know

his stuff.

It is understandable why you went off of abx for awhile...why not see

what happens...I really do hope that you sero-convert to positive so

that your ins. co. will give you IV abx when you are ready for it. I am

fascinated by all of this and eagerly await your findings (uh-oh, Marta

the guinea pig?!) LOL.

Webster's 9th New Collegiate Dictionary describes serum as: " ...the

watery portion of an animal fluid remaining after coagulation: BLOOD

SERUM; esp : immune blood serum that contains specific immune

bodies... " . Sounds like a more specific fluid to test for antibodies.

I'm sure that one of the medical professionals on this list can explain

it better if they already haven't.

As far as the Holter monitor...I never had better heart rhythm that when

I wore that damned thing!!! Good Luck, Joan LI, NY

[Guest guest]

Hi Joan,

Thanks for the definition about serum, that makes sense, would you

believe I have a huge medical dictionary and a current one to boot in this

computer room, but it is just so darn heavy that I never bothered to look it

up.....duh'!

I know what you mean about the holter monitor, I will probably feel like

a fool when I get those results too....it's bad enough to get those glowing

lab tests back each month! I am fortunate that even with the normal tests

my doctor does know I am really sick...I hope I make out well with the new

guy too, I hate going to new doctors, it feels like a job interview to me.

This guinea pig will keep everyone posted on what goes on, I just hope that

no newly infected people who read the list DON'T quit their abx.....I have

been popping them for three years now, and so far I have proven to myself

they do relieve many of my symptoms, still I want to stay off for just one

more month to see if lab tests are affected. My doctor warned me that

staying off them will only allow the spirochetes to have a party/orgy in my

body and they will be reproducing like crazy, I imagine when I do go back I

will get one helluva herx.

I am so glad you have a good Infectious disease doctor, it really makes a

difference I think when you have a specialist who is telling your insurance

company that you need this treatment as opposed to the family practice type

doctor.

Hugs,

Marta (NJ)

From: Namkrats3@... (Joan S.)

Hi Marta,

I am so glad to read that you have found a LL ID specialist! I am seeing

one now, and it has lifted the weight off of my shoulders...not having

to constantly do the research myself anymore. I still read alot about

LD, but the urgency isn't there anymore because this LLMD seems to know

his stuff.

It is understandable why you went off of abx for awhile...why not see

what happens...I really do hope that you sero-convert to positive so

that your ins. co. will give you IV abx when you are ready for it. I am

fascinated by all of this and eagerly await your findings (uh-oh, Marta

the guinea pig?!) LOL.

Webster's 9th New Collegiate Dictionary describes serum as: " ...the

watery portion of an animal fluid remaining after coagulation: BLOOD

SERUM; esp : immune blood serum that contains specific immune

bodies... " . Sounds like a more specific fluid to test for antibodies.

I'm sure that one of the medical professionals on this list can explain

it better if they already haven't.

As far as the Holter monitor...I never had better heart rhythm that when

I wore that damned thing!!! Good Luck, Joan LI, NY

[Guest guest]

In a message dated 7/14/99 10:14:08 AM Eastern Daylight Time,

mlmccoy@... writes:

<< How about fast weight gain? No hair loss, no good Thyroid tests have

been done though. My skin is excessively greasy, this is new, and no idea

why that is happening to me. >>

where is your temp??? oral or preferably under your armpit just open

wakening minimal movement...is it normal or sub normal...greasy hair could

be due to a fast metabolism HYPER...believe it or not...has a lot of true

hypothyroids have lost weight before diagnosis...where the common expected

hypo symptom would be weight gain..another reason for weight gain in a

hypothyroid is water retention ...after I started treatment, I felt like i

was piddling so much I should have just moved into the bathroom...the

character of my skin also changed..sorry I can't remember the medical term

and process behind it, but the middle layers of my skin developed a jelly

like substance that after treatment dissapated

personally I am also researching PCOS (insulin resistance) as a cause for

inability to lose weight..normally...

I go to the endo next week and will have a fasting blood sugar and serum

insulin for him to evaluate....since Lyme tends to screw up every body organ

and system....the endocrine system is an important system to

evaluate....adrenal insufficiency...pcos...cushings syndrome....sorry if I

make y'all crazy with new things to consider.....but...if ya don't look past

the Lyme and try to figure out where and what damage has been caused by the

wee critters, all the antiobtics in the world won't offset some of these

other problems and their symptoms.....Bernadette

[Guest guest]

Hi Marta,

I just received an e-mail from a very nice person who told me that there

is a type of Holter monitor that records only when you have an " event "

and you push the button. It can record up to 3 events. You can call

your doc and play back the information that it recorded over the phone

for his interpretation. Sounds superior to the 24 hr. monitor that I

wore when my heart " behaved " the whole time!

Which antibiotic do you plan on starting to put an end to that

" party/orgy " that you are hosting?!! LOL Hugs, Joan

[Guest guest]

Hi Joan,

Too late, I have the 24 hour thingee on now, and it is really heavy, (to

me anyway) I opted to have it put on my shoulder rather than at the waist.

I haven't noticed a single incident of course since I got the darn thing,

but most of my heart pounding is in the very early AM....so soon as I get

away from this computer and move around it may record something.

I would really like to give IV meds a try again, if I can convince the

new Infectious disease doctor to fight my insurer, but other than that I am

open to try oral anything, seems like I have been on Ceftin and Zithromax

for ages.

Hugs,

Marta

NJ

From: Namkrats3@... (Joan S.)

Hi Marta,

I just received an e-mail from a very nice person who told me that there

is a type of Holter monitor that records only when you have an " event "

and you push the button. It can record up to 3 events. You can call

your doc and play back the information that it recorded over the phone

for his interpretation. Sounds superior to the 24 hr. monitor that I

wore when my heart " behaved " the whole time!

Which antibiotic do you plan on starting to put an end to that

" party/orgy " that you are hosting?!! LOL Hugs, Joan