Re: Tested negative for lyme

[Guest guest]

If I am giving worng info, someone please let me now. It is sometimes hard to

rely on the test, especially if you have been on abx. The little suckers hide

and cannot be detected. From my personal explerience, most of my test have come

back marginal at best, but my somptoms are so bad at times my dr. relies on

clinical symptoms.

Just my thought, any others out there.

Thanks,b

[ ] Tested negative for lyme

The latest crop of blood tests all showed up negative. They included

the Western blot, some co-infection tests (babyosis and the one with

an e) and a few other tests (sera something, etc.) My symptoms seem a

bit better but there's still some tingling going on. And I did feel

like crap over the weekend so maybe that was herxing? Also no burning

jaw or numbness (just head tingling) since I started abx so maybe

things are settling down.

My LLMD said to stay on the abx until my next visit in Feb and I

assume there will be further blood tests then. Does this sounds like

the right advice to you veterans? Is there anything else I should be

doing prior to that visit?

Thanks, Chris

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[Guest guest]

If I am giving worng info, someone please let me now. It is sometimes hard to

rely on the test, especially if you have been on abx. The little suckers hide

and cannot be detected. From my personal explerience, most of my test have come

back marginal at best, but my somptoms are so bad at times my dr. relies on

clinical symptoms.

Just my thought, any others out there.

Thanks,b

[salfi, ]

Bill thanks for your reply, My tests were taken prior to me starting abx. I've

heard that some people never test positive (I think someone recently posted 15

reason why not) but have raging symptoms. If its not lyme what else could it be?

[Guest guest]

It is really hard for me to put a finger on. There are times I feel semi ok,

but it doesn't last for that a day and is usually followed by a period of

feeling wanting to dye. Most of my test have come back marginal, but my

symptoms rage on. I am feeling about 1/4 ok now, with my mental health being

hit the most. Also problems with my legs are friving me nuts (joint and muscle

pain as well as restless legs)..that sucks. Along with my legs my feet are

numb, but hurt and burn as the same time if you can understand that. Whenever

one of my toes are slightly banged into something the pain is hurrendous (sp).

Things are really hard right now, being out of work for almost a year. I am

currently getting longterm disability which helps. We are having to file for

bankrupcy, so well see where that leads.

If you would like to email privately, please feel free.

Thanks,

bb

RE: [ ] Tested negative for lyme

If I am giving worng info, someone please let me now. It is sometimes hard to

rely on the test, especially if you have been on abx. The little suckers hide

and cannot be detected. From my personal explerience, most of my test have come

back marginal at best, but my somptoms are so bad at times my dr. relies on

clinical symptoms.

Just my thought, any others out there.

Thanks,b

[salfi, ]

Bill thanks for your reply, My tests were taken prior to me starting abx. I've

heard that some people never test positive (I think someone recently posted 15

reason why not) but have raging symptoms. If its not lyme what else could it be?

[Guest guest]

I always tested negative on the test, but I haven't had the

Western Blot yet. I am going to take that after the first of the

year. I want to send it to Igenix, and they do not take anything but

cash, and that has been short this year!! I know what I have,

because I have all the herxs and symtoms, etc. I hope whatever you

have, it is not bad and cured easily!! Good Luck!!

> The latest crop of blood tests all showed up negative. They

included

> the Western blot, some co-infection tests (babyosis and the one

with

> an e) and a few other tests (sera something, etc.) My symptoms seem

a

> bit better but there's still some tingling going on. And I did feel

> like crap over the weekend so maybe that was herxing? Also no

burning

> jaw or numbness (just head tingling) since I started abx so maybe

> things are settling down.

> My LLMD said to stay on the abx until my next visit in Feb and I

> assume there will be further blood tests then. Does this sounds

like

> the right advice to you veterans? Is there anything else I should

be

> doing prior to that visit?

>

> Thanks, Chris

[Guest guest]

Same here Bill, I have had negatives and positives. More negatives

than pos., but the Dr. went by the symtoms and my reaction to the

anti-biotics- herxing, etc. If they could just come up with a 100%

reliable test, that would be great!

[Guest guest]

I always tested negative on the test, but I haven't had the

Western Blot yet. I am going to take that after the first of the

year. I want to send it to Igenix, and they do not take anything but

cash, and that has been short this year!! I know what I have,

because I have all the herxs and symtoms, etc. I hope whatever you

have, it is not bad and cured easily!! Good Luck!!

[salfi, ]

Yea, I guess this one is not so easy. Blood test - test positive-lock in on a

treatment = not the case w/ lyme.

As long as I'm on abx and they seem to be working is all that matters. I guess

I'm worried about being misdiagnosed w/ lyme and having some other problem go

untreated for a length of time.

[Guest guest]

I always worried about the same thing, but I have been tested for

everything that it could possibly be, so we have no doubt that it is

Lyme, and everything else was ruled out. It is just scary when you

are faced with something this tramatic. We know how sick we are, but

no one else can understand unless they have Lyme also. Just hang in

there, and I will add you to my prayer list.

[Guest guest]

It took me 12 years to test positive for Lyme. I tested positive for

Babesiosis the first time anyone thought to test for it. You have to

watch for which lab they are using and if they're only calling it

positive if it matches CDC. I wish they would stop printing that on the

results. SSA, Medicare, Workers' Comp., etc. don't know the difference

and take it at face value.

[salfi, ]

Ok so what I hear is don't sweat the neg tests. Focus on feeling better with the

abx. Today, I seem to have tingling face and head pretty good despite this being

day 5 on Ceftin. If Ceftin was a match for my symptoms would I feel better

almost immediately or would it be a gradual thing that takes time? What are most

peoples' experiences with abx? Immediate or slow and gradual? Just wondering.

Thanks Chris

[Guest guest]

I have been on abx for 10 weeks this time, the longest period of treatment

so far in 4.5 years. In the past it took a week or so to get back to the

point of feeling good. After 10 weeks this time I am still cyclic on a four

week schedule, I happed to follow the new moon (right now). When I cycle up

my pain and other symptoms increase as I cycle down my condition improves.

Also I am a diabetic and my average blood glucose also cycles along with my

symptoms meaning that my glucose levels are higher when I am at the peak of

the cycle. It is normal for glucose to go higher when a diabetic is sick so

there is something happening.

The Lyme has a 4 week growth cycle in that it will reproduce its self every

4 weeks and when this growth is going on the symptoms increase. My symptoms

were always cyclic even without abx they went from bad to worse, now the go

from good to bad. The goal at present is to get to a point of no symptoms

for 8 weeks and than " start to think about " stopping abx, the quote is an

exact quote from my llmd.

As far as the tests, when you have symptoms and the test is negative you

probably have Lyme because it is very hard to test for, that is also why we

are fanatical about " which lab " some are better than others.

I started Zithromax 5 days ago and I start Mepron tomorrow morning to also

treat Babesia, between these two it should knock something for a loop over

the next 16 weeks (16 weeks Zithromax with 2 three week sessions of Mepron.

So keep taking your abx and let your self enjoy the Holiday Season as much

as possible.

Dave

[salfi, ]

Ok so what I hear is don't sweat the neg tests. Focus on feeling better with

the abx. Today, I seem to have tingling face and head pretty good despite

this being day 5 on Ceftin. If Ceftin was a match for my symptoms would I

feel better almost immediately or would it be a gradual thing that takes

time? What are most peoples' experiences with abx? Immediate or slow and

gradual? Just wondering.

Thanks Chris