Re: Lyme or no? CD 57

[Guest guest]

Hi NJ - I suggest posting your questions at

_www.lymenet.org/FlashDiscussion/MedicalQuestions_

(http://www.lymenet.org/FlashDiscussion/MedicalQuestions) .

People will respond with discussion. And yes, to me it looks like you have

Lyme, - Robin

**************It's Tax Time! Get tips, forms, and advice on AOL Money &

Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001)

[Guest guest]

" Several reasons I have been hesitant to believe i have Lyme is

1. The WB test inconclusive

2. Been careful about ticks, never had a rash

3. Don't have any joint pains

4. my temp is chronically low (even on thyroid med it rarely gets

above 97). I don't get feverish though i feel feverish in spells.. " ---

Dear nj, [does that mean you live in NJ? I do.]

Re your question:

It is really easy to get bit by a tick and not have a rash. Also,

there are so many symptoms of a Lyme diagnosis, that not having joint

pains is inconclusive.

In my case, I DID have a positive WB test, so that was clear.

However, I had no other " typical " Lyme symptoms - no rash, no joint

pain, no fever.

My opinion - go with your doctor's advice and treat for Lyme.

We know the WB test is pretty meaningless unless it is positive.

good luck,

ellen

[Guest guest]

I had lyme for many years and had no joint pains..you know why -I had been

bitten by Borrelia GARINI ...no joint pain -just feverish , throught sore and

chills and low body temp was low...I loved to stay worm as my feet were ice COLD

....that lasted for at least 3-4 years

Now I recall I was so active and runner --that is why the reason that kept it

out of my joints

But I could feel that was going somthing on with my head.Was blaming stress!

rasheedaas <rasheedaas@...> wrote:

" Several reasons I have been hesitant to believe i have Lyme is

1. The WB test inconclusive

2. Been careful about ticks, never had a rash

3. Don't have any joint pains

4. my temp is chronically low (even on thyroid med it rarely gets

above 97). I don't get feverish though i feel feverish in spells.. " ---

Dear nj, [does that mean you live in NJ? I do.]

Re your question:

It is really easy to get bit by a tick and not have a rash. Also,

there are so many symptoms of a Lyme diagnosis, that not having joint

pains is inconclusive.

In my case, I DID have a positive WB test, so that was clear.

However, I had no other " typical " Lyme symptoms - no rash, no joint

pain, no fever.

My opinion - go with your doctor's advice and treat for Lyme.

We know the WB test is pretty meaningless unless it is positive.

good luck,

ellen

[Guest guest]

Hi, NJ.

Sounds to me like you probably do have Lyme. As you know, some people

will NEVER show a positive test, on WBs or any other antibody-type

test, even though they do have the disease. So, a positive test is

wonderful - however, a negative test does not mean that you can say

you do not have it! A CD57 of 11 looks like you've probably had it

for a long time, too. It takes a while for it to get that low. My

own CD57 has varied each time we take it (Labcorp ONLY!) - between 92

and 184 over the past 2 1/2 years. My husband's has varied between 98

and 180 over the past 1 1/2 years. I have Lyme (pos IGM WB - IGX lab,

3 times) and Babesia (neg - IGX 4 weeks post-bite, about to retest).

My husband also has Lyme (pos. IGM WB- IGX lab), Babesia (pos - IGX

lab) and had Ehrlichia (pos - IGX lab). His Ehrlichia seems to have

been resolved. Note: I am sure that my initial Lyme was cured,

however I have had 12-15 more tick bites since then and my husband has

probably had another 6-8 since his initial infection.

I work for a physician and we use IGeneX Labs for all of our Lyme and

Co-infection testing, as well as using the CD57 as a screening (if its

below 200 we push for Lyme testing - and if its a recent - less than a

year - tick bite, and over 200, we still follow up with IGeneX). We

have noticed that the CD57 drops even lower with long-term heavy dose

ABX, but only temporarily. It seems to rebound about a month or so

after stopping ABX. It really helps raise the CD57 to be on the

Buhner protocol while on the ABX, and especially afterwards....Cat's

claw, in particular, seems to make a difference in our patients.

I, too, have low body temp - usually around 97.3. Occasionally, I do

run fevers, but I am always HOT (burning up!) and sweating since a

tick bite in May 2007 that apparently gave me the Babesia. I have had

periods of profound joint pain, and sometimes swelling of the knees.

My most troubling and constant problem is chronic, very painful muscle

spasms - mostly in my back, neck, ribs, and legs, but sometimes in my

arms, hands, feet. Can't seem to get rid of them.

I did read an article somewhere that said a study had been done in

some county in land where 80% of the ticks had Lyme.....that's

incredible. With my Brain Fog, its not likely that I will recall the

exact location or source of info.

We have a patient with a CD57 of 11 and most of her SX are all neuro-,

unfortunately she cannot remember to take her ABX, has the appearance

of advanced Alzheimer's, very sad. And she has Lyme which is probably

responsible for it. Another patient with a 14 is too debilitated to

make it to the office anymore for tx. My own daughter-in-law's was 17

when we tested, and she was IGX and CDC pos on WB's. We all got our

bites here in Georgia. Luckily, my daughter-in-law has a great ILADS

LLMD working with her now - out in Seattle, near where they live.

My physician says there is one other thing known to affect the CD57

besides Lyme - Syphilis. So, now she tests for that (RPR test) when

she does the initial CD57 on patients.

I hope this was helpful to you. Best wishes, Terri

>

> Hello,

> My doctor (internist, specializing in environmental medicine) has been

> telling me i have Lyme disease, and I'm getting more convinced he is

> correct. The problem i have with it is that the Western Blot test was

> inconclusive. I don't completely understand the test results (most

> columns were negative), but i was positive ++ for band 41kDa " having

> been exposed to spirochetes " , though, as my doctor says, that doesn't

> have to mean lyme spirochetes. I was IND for band 31 kDa. He says the

> test is not always reliable, especially in the case of someone who is

> not well enough to mount an antibody response. That would be me. I

> also have chronic mercury problems (being addressed).

>

> My doctor is guiding me in Buhner's method of treating Lyme,

> which he espouses. I have also read the book, which i found

> independently, as well as Dr. Zhang (i have a friend who was helped

> tremendously by that protocol). I find Buhner more informative, so i

> am happy to follow this protocol.

>

> The one thing that tends to convince me is my CD57 count, which was 17

> a few months ago, and now is at 11. I understand that's very low and

> is indicative of late-stage Lyme. Does anyone know -- is that always

> the case? Or can something else make CD57 that low? What does that

> mean for my chances of recovery?

>

> Several reasons I have been hesitant to believe i have Lyme is

> 1. The WB test inconclusive

> 2. Been careful about ticks, never had a rash

> 3. Don't have any joint pains

> 4. my temp is chronically low (even on thyroid med it rarely gets

> above 97). I don't get feverish though i feel feverish in spells..

>

> The reasons for believing i have Lyme are:

> 1. CD57 = 11

> 2. tested positive for ehrlichia

> 3. have spent time in NY woods and land woods (and French woods -?)

>

> I have autonomic nervous system problems, fatigue, autoimmune issues

> (blood tests), adrenal and thyroid hypofunction, and other symptoms

> which may be attributable to either Lyme, Mercury, or both, or neither

> (i like to keep an open mind).

>

> I also tested negative for babesia, but my doctor thinks i have it. He

> says the test for this is quite inaccurate. I was on Plaquenil for 2

> months but went off it because i was too miserable on it. Tried

> artemesinin briefly -- it didn't go well for me. Doctor says Buhner

> has revised his opinion on artemesinin anyway.

>

> I'm been on the main Lyme protocol for a couple weeks, trying to work

> up the dose, but it's making me even more lethargic than usual, and

> feeling ill in the gut, and it's setting me back at my work. I

> couldn't work for 6 months when this all began -- after many months of

> mercury detox i was getting my brain back and working again. Now it

> feels i am backsliding since beginning the herbs. I want to stick with

> it, and i'm hoping it gets better, but it would help to know more

> clearly that i actually do have Lyme disease.

>

> So, I guess i'm looking for people here who are experienced with

> chronic Lyme and this protocol, and maybe know something about the

> various tests (i've had lots of them), and wouldn't mind giving me

> some advice.

>

> thanks for listening,

> NJ

>

[Guest guest]

THe Sarsaparilla is a good BLOOD cleanser. I sure woudln't be without it. Also

the Red Root is best for the lymph system. Are you taking it? Tincture form?

Jim.

###

blymie lymie <blymielymie@...> wrote:

Jim

Stupid question I have...the lymph system...my glands under my ears and just

above my legs are always hurting or swollen. Would the Sarsaparilla help?

Thanks

Jaye

[Guest guest]

Thank you Terri, this is the most useful info i have been able to get

on this, much appreciated. While I know for a fact i've never had

syphilis, i'm wondering if chronic mercury poisoning could cause such

a low CD57.

BUt I'm planning to stick to the Buhner protocol. It appears that

something else I was taking for adrenal support was causing some

extreme symptoms (it had Relora in it, which was likely the culprit),

probably not the lyme herbs. I quit everything for a few days, and

will begin the lyme herbs again, slowly.

Scary to hear about the unfortunate condition of others who have such

low CD57, but it does encourage me to stay with the protocol, and

maybe look into some other tests.

MY memory is definitely in bad shape. I need to learn a lot of things

for my work, and i go back to notes i took a few months ago and i just

have retained so little, but at least i learn it more quickly the

second time. It's a real fight.

thanks again,

NJ

>

> Hi, NJ.

> Sounds to me like you probably do have Lyme. As you know, some people

> will NEVER show a positive test, on WBs or any other antibody-type

> test, even though they do have the disease. So, a positive test is

> wonderful - however, a negative test does not mean that you can say

> you do not have it! A CD57 of 11 looks like you've probably had it

> for a long time, too. It takes a while for it to get that low. My

> own CD57 has varied each time we take it (Labcorp ONLY!) - between 92

> and 184 over the past 2 1/2 years. My husband's has varied between 98

> and 180 over the past 1 1/2 years. I have Lyme (pos IGM WB - IGX lab,

> 3 times) and Babesia (neg - IGX 4 weeks post-bite, about to retest).

> My husband also has Lyme (pos. IGM WB- IGX lab), Babesia (pos - IGX

> lab) and had Ehrlichia (pos - IGX lab). His Ehrlichia seems to have

> been resolved. Note: I am sure that my initial Lyme was cured,

> however I have had 12-15 more tick bites since then and my husband has

> probably had another 6-8 since his initial infection.

> I work for a physician and we use IGeneX Labs for all of our Lyme and

> Co-infection testing, as well as using the CD57 as a screening (if its

> below 200 we push for Lyme testing - and if its a recent - less than a

> year - tick bite, and over 200, we still follow up with IGeneX). We

> have noticed that the CD57 drops even lower with long-term heavy dose

> ABX, but only temporarily. It seems to rebound about a month or so

> after stopping ABX. It really helps raise the CD57 to be on the

> Buhner protocol while on the ABX, and especially afterwards....Cat's

> claw, in particular, seems to make a difference in our patients.

> I, too, have low body temp - usually around 97.3. Occasionally, I do

> run fevers, but I am always HOT (burning up!) and sweating since a

> tick bite in May 2007 that apparently gave me the Babesia. I have had

> periods of profound joint pain, and sometimes swelling of the knees.

> My most troubling and constant problem is chronic, very painful muscle

> spasms - mostly in my back, neck, ribs, and legs, but sometimes in my

> arms, hands, feet. Can't seem to get rid of them.

> I did read an article somewhere that said a study had been done in

> some county in land where 80% of the ticks had Lyme.....that's

> incredible. With my Brain Fog, its not likely that I will recall the

> exact location or source of info.

> We have a patient with a CD57 of 11 and most of her SX are all neuro-,

> unfortunately she cannot remember to take her ABX, has the appearance

> of advanced Alzheimer's, very sad. And she has Lyme which is probably

> responsible for it. Another patient with a 14 is too debilitated to

> make it to the office anymore for tx. My own daughter-in-law's was 17

> when we tested, and she was IGX and CDC pos on WB's. We all got our

> bites here in Georgia. Luckily, my daughter-in-law has a great ILADS

> LLMD working with her now - out in Seattle, near where they live.

> My physician says there is one other thing known to affect the CD57

> besides Lyme - Syphilis. So, now she tests for that (RPR test) when

> she does the initial CD57 on patients.

> I hope this was helpful to you. Best wishes, Terri

>

[Guest guest]

Jim

I'm not taking it right now, but was taking Sarsaparilla capsule form.

I still don't understand what a Tincture is. All I know about it is that it

contains alcohol...I think. Can you explain what it is?

I went to my primary last week for the glands...they were getting real bad and

she said it was a bug going around. Needless to say I don't feel she is very

Lyme literate...but then she did ask me questions about my Lyme as she is trying

to help a friend she dx with FM. I tried talking to her about clinical dx...I

won't go into that story...you probably already know how that turned out.

Jaye

" R. Bayliss " <jbbigrod@...> wrote:

THe Sarsaparilla is a good BLOOD cleanser. I sure woudln't be without

it. Also the Red Root is best for the lymph system. Are you taking it? Tincture

form?

Jim.

[Guest guest]

Yes, a tincture is made with alcohol. You use the herb in cut form, NOT powder,

and put it into a jar with the alcohol. Alcolhol is the best liquid to leach

out the good parts of many herbs. You can use Glycerin too IF you are allergic

to alcohol. Most people are not allergic to alcohol though; but some are. you

are not really getting that much alcohol a day from it.

You usually put one part herb into four parts of alcohol and let it sit for

four to six weeks. And shake it once a day. Then you pour the liquid through a

cheescloth into a smaller jar for your use.

I have done Red Root, Periwinkle and Stephania root this way. I use straight

Vodka for the alcohol. IT is 40% alcohol. You can use grain alcohol and dilute

it with distilled water to get your 40 or 50 % that you need. I find it simpler

just to use the Vodka.

Don't know what else to tell you. Go for it.

Jim.

###

blymie lymie <blymielymie@...> wrote:

Jim

I'm not taking it right now, but was taking Sarsaparilla capsule form.

I still don't understand what a Tincture is. All I know about it is that it

contains alcohol...I think. Can you explain what it is?

I went to my primary last week for the glands...they were getting real bad and

she said it was a bug going around. Needless to say I don't feel she is very

Lyme literate...but then she did ask me questions about my Lyme as she is trying

to help a friend she dx with FM. I tried talking to her about clinical dx...I

won't go into that story...you probably already know how that turned out.

Jaye

" R. Bayliss " <jbbigrod@...> wrote:

THe Sarsaparilla is a good BLOOD cleanser. I sure woudln't be without it. Also

the Red Root is best for the lymph system. Are you taking it? Tincture form?

Jim.

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.