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Posted by NeuroEcclectic (Member # 17783) on :
 
I have no LLMD but I have a doc that is willing

to learn. She said that the term herxsheimer

rection does not apply when I get flare ups from

excercise. I get them just from walking a block.

Is there a link specific to this that I can show

her?

You're all winners!

~J.
 
Posted by Keebler (Member # 12673) on :
 
-
Just get a different doctor. While it may not technically be a herx it is from the liver having to work hard and toxic overload in your body - and that is a herx. It can also be from the stress on your nervous system or oxygen on the infection so, the herx process.

She is splitting hairs because, technically, a herx is only from Rx. But, were she LL, she'd know the definition had an expanded scope for lyme patients.

She likely does not under the exercise intolerance aspect of this either. Drop her.

Oh . . . I just went back and reread. She is willing to learn, huh?

Well, what would she call it? What term can you both agree on so that you can describe what you are experiencing? Exercise Pay-Back is one term used.

Does she know this indicates liver stress?

Does she understand the mitochondrial dysfunction that comes with lyme and that makes exercise more challenging?

==============

Even if not about lyme, specifically, this explains why some people have such trouble and what can help:

www.cfids.org/sparkcfs/working-out.pdf

WHEN WORKING OUT DOESN'T WORK OUT

By Dr. Christopher R. Snell, Dr. J. MarkVanNess and Staci R. Stevens, et.al.

From THE CFIDS CHRONICLE SUMMER 2004

without photos for easier printing: http://tinyurl.com/4qevgl

-
 
Posted by canefan17 (Member # 22149) on :
 
A Herx is a die-off. It's proven fact that when bacteria dies it releases toxins.

Now did that occur when you went for a walk... that's arguable.

But Herxs exist

[ 02-25-2010, 08:18 PM: Message edited by: canefan17 ]
 
Posted by Buster (Member # 19472) on :
 
Your doctor is right
 
Posted by randibear (Member # 11290) on :
 
i disagree. there is such a thing as herx.

what do you call it when your symptoms flare? look it up -- herx. dr. s calls it that, so does my doc.

i'd say she needs to do some more research.
 
Posted by massman (Member # 18116) on :
 
Your organs are not in good enough shape to detox what results from a die-off.

Little or no herxes, IME, when detox organs can handle it.

Some seem happy that they herx. I have been there and do not like it.
 
Posted by NeuroEcclectic (Member # 17783) on :
 
O.K. O,.K... lovely team,
She just called me with my IGENEX results and

said that no chronic bands were positive. 31

band poz on infection. No chronic results on any

band. She was reviewing by only Igenex test when

Dr. P dx me. This test was taken in 2006. She

did not say that I do not have LD but she is

concerned that I do not and may have MS.

You're all AWESOME!
 
Posted by NeuroEcclectic (Member # 17783) on :
 
SO, Why would you say that I get attacked when I

lightly excercise?

Brain-C/T Spine full of lesions. The C-Spine

lesions went away after treatment in 07 but I

went off of treatment and they came back ten

fold.
 
Posted by METALLlC BLUE (Member # 6628) on :
 
A Herxheimer reaction is not likely causing your exercise induced symptoms. The disease itself and it's chronic inflammatory affect on your body is likely the cause. A herxheimer reaction is a response of the body to the death of certain infectious diseases -- specifically seen in patients with Lyme Disease and Syphilis when antibiotic (or comparative therapies) are given.
 
Posted by NeuroEcclectic (Member # 17783) on :
 
Thanks Metallic and All,

Maybe I do not have LD. What do you think of those test results?
 
Posted by sutherngrl (Member # 16270) on :
 
Lyme Disease is a clinical diagnosis. This is why you need a LLMD. They can look at your symptoms and history and determine if you have LD or not. Test are used to back up the clinical diagnosis. Sometimes you don't test positive until you have been in treatment for a while.

Also a herx is from die off of the bacteria. Exercise intolerance is a "symptom" of LD.
 
Posted by NeuroEcclectic (Member # 17783) on :
 
Heya...
The renowned Dr. P in CT was/is certain that I

have LD. The kind of LD that mimics MS. Dr. G

(not an LLMD) is not against LD. She is doing

her job to make sure that something is not being

missed.

I know I was exposed to Bartonella. Maybe I

just have Bart? Can it cause CNS lesions?
 
Posted by hostbody (Member # 12695) on :
 
I've noticed that when I lift weights I will have an increased herx reaction. I believe this is due to what breakdown of muscle there is releasing the borrelia into my bloodstream allowing it to be killed. Or releasing the "dormant" borrelia, forcing it to have a life cycle, which then it dies naturally in a few weeks....again increasing my herx. Based on this theory, I believe it is quite possible to exercise and release borrelia from muscles. Also, upon exercising you may be slightly increasing body temperature which also has an negative effect on the borrelia. There is just not enough information on Lyme to say that something does or does not help.
 
Posted by NeuroEcclectic (Member # 17783) on :
 
thanks host body... [Smile]
 
Posted by lymebytes (Member # 11830) on :
 
Here are links on herxing:
http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=10&t=35
 
Posted by dsiebenh (Member # 5353) on :
 
I am not convinced the herx is the result of anything dying, and neither was one doc I went to... he said it was a result of ****ing off critters and part of their escape mechanism, like a squid.

Has anyone proven the herx is a result of bugs dying, or is this still a (very old) speculation?
 
Posted by Keebler (Member # 12673) on :
 
-
Well, absolutely, when spirochetes get irritated they emit toxins. And that irritation to them can be nearly anything. That is why lyme patients feel so awful so much of the time. Even a little vibration will irritate spirochetes. Too much heat, too much movement.

Still the herxheimer reaction - from "chemical assault" (even if from a strong herb) - is very real.


http://en.wikipedia.org/wiki/Herxheimer_reaction

Herxheimer reaction

The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.

Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.

It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.

Duration in syphilis is normally only a few hours but can be much longer, up to months or years, for other diseases, especially Lyme Disease. The intensity of the reaction reflects the intensity of inflammation present.

The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]

The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]

. . . much more at link above.

========================

http://www.ncbi.nlm.nih.gov/sites/entrez

PubMed Search for Medical Abstracts:

Herxheimer Reaction - 233 abstracts

Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.

=======================
=======================

A "herx" can also be connected to liver stress, in general. If the liver is overwhelmed, and then asked to outperform - handling too many chemicals or faced with too much exercise - it can't process out the toxins and there is a backwash, so to speak. Technically, that may not be called a herx (or it may be) but it's a toxic reaction, all the same.

More specifically, a "herx" can also be connected to porphyria, just one kind of liver stress resulting in a toxic level of elevated porphyrins. There are at least eleven kinds. More about how at least one kind is seen frequently with lyme patients:
-----------------------------------

http://www.cpnhelp.org/secondaryporphyria

SECONDARY PORPHYRIA: what you should know before starting a CAP (combined antibiotic protocol)

=================

KPU (Kryptopyrroluria) is just ONE type of porphryia that seems to have importance regarding patients with lyme, autism and those who have issues with heavy metals:

http://www.klinghardtneurobiology.com/KPUprotocol.pdf

KLINGHARDT's KPU PROTOCOL

===================

More discussion here about KPU (kryptopyrroluria) regarding patients with chronic lyme:

http://www.drrandy.org/article.html

A New Breakthrough In Helping Chronically Ill Patients - by Randy S. Baker, MD

=====================

Some discussion:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?

Topic: Porphyria

==================

www.porphyriafoundation.com

THE AMERICAN PORPHYRIA FOUNDATION

=======================

http://www.cpf-inc.ca/

CANADIAN ASSOCIATION FOR PORPHYRIA
-

[ 02-26-2010, 02:13 PM: Message edited by: Keebler ]
 
Posted by MariaA (Member # 9128) on :
 
quote:
Originally posted by dsiebenh:
I am not convinced the herx is the result of anything dying, and neither was one doc I went to... he said it was a result of ****ing off critters and part of their escape mechanism, like a squid.

Has anyone proven the herx is a result of bugs dying, or is this still a (very old) speculation?

I think there are actually studies that show what you're asking, but I don't have them handy.

the other issue that can cause a herx response is when your immune system can't 'see' the borrelia until it's dead, then the dead bugs cause a major immune response where you had none before. I think you can test this via various inflammation tests.

The way that works is that in some people, borrelia can sometimes scramble it's outer surface proteins and make them invisible to the body's immune system. There are several documented (with animal testing) ways that it does this. Another thing it can do that makes it invisible to the immune system is that it can enter cells, where the immune system's various killer (and other) cells don't penetrate. A third action is when it goes into 'cyst' form or enters 'compartments' like knee joints or the brain, where there is poor blood flow and poor access by most of the immune system's cells.

The herxheimer type situation that can happen in all these instances is that once you start killing the borrelia spirochetes, your body's immune system can 'see' the dead spirochetes or fragments of them, and it can mount a vigorous immune response similar to what happens upon first infection. This is why you sometimes see heightened fever, and certain other symptoms that look just like an initial exposure. You may also see IgM bands on a Western Blot change to a more 'positive' result (If I recall right- I might be mixing up IgM and IgG, but I"m trying to name the one that shows antibodies that should technically indicate initial exposure, except that with Lyme, we see them for years and years, and what I just described- the bug re-appears out of compartments or comes out of cells or cysts and is 'seen' by the immune system as if it's a first exposure- is one of the theories on why that happens).

one of the reasons even an LLMD might question some of the 'typical' explanations for herxheimer reactions is that we sometimes see them with patients who have been treating for a long time, whenever they go on new medication for example. It doesn't quite make sense how it is that a few remaining bacteria can cause that much 'toxicity'. Unless you see it as an overactive immune response that is occurring because the immune system 'suddenly' sees the bacteria once they're killed or forced out of compartments or invisible-to-the-immune-system forms like cysts or inside-the-cells forms.
 
Posted by IckyTicky (Member # 21466) on :
 
Yeah, my Doc was certain I had MS. I was too. Turned out to be Lyme.
 
Posted by lymemomtooo (Member # 5396) on :
 
I am a little brain dead at the moment but isn't band 31 one of the bands that is rarely tested due to the vaccine. Isn't it one of the most reactive LD bands and they normally don't test because anyone with the vaccine will be + .

Sorry, my memory is on vacation...lmt
 
Posted by NeuroEcclectic (Member # 17783) on :
 
icky sticky-how did they realize that it is Lyme?

lyme-mom: seems right to me otherwise Dr. P in CT would never tell me that I tested poz for lyme.
 
Posted by bonafidejason (Member # 24472) on :
 
Neuro Ecclectic
I am seriously concerned your doctor may be taking you down the wrong path. IT IS WELL WORTH paying 300 dollars out of pocket to get tested at IgeneX for the basic panel. If your doctor will not order this test for you, you must see a doctor that will order this important test to eliminate the possibility of Lyme first.

Most people test negative at least a few times before getting a blood-test diagnosis, especially when inferior labs are used. I was tested negative 5 times until I went to IgeneX, and I lit up the screen and am considered positive even by the very strict CDC.

As far as "HERX"ing, your doctor is mincing words and is not really LISTENING. You are in pain after exercise, right? This is a classic Lyme symptom, possibly due to the increased blood flow/inflammation/pressure in the head. That is the important fact, and don't let your doctor tell YOU what YOUR symptoms are.
 
Posted by randibear (Member # 11290) on :
 
check the lyme symptoms list also. if you've got a majority of them, like we all, then you got it.

period...but get the igenex..
 
Posted by Lymetoo (Member # 743) on :
 
quote:
Originally posted by NeuroEcclectic:
She just called me with my IGENEX results and

said that no chronic bands were positive. 31

band poz on infection. No chronic results on any

band.

What the heck does THAT mean?

If you'll read Dr C's Western Blot Explanation if will tell you that the IgM is positive more often in chronic Lyme.

I'll bet she doesnt' know that.

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

"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."----DR C of MO

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077
 
Posted by sutherngrl (Member # 16270) on :
 
Lyme Disease is a "clinical diagnosis". Get a good LLMD!

Later as you treat, more bands will likely show up and that will back up a clinical diagnosis.
 
Posted by NeuroEcclectic (Member # 17783) on :
 
I am reading through all of your awesome

responses. You are all so SUPPORTIVE! We are all

in this together right?

The herx that I experience after excercise is

topical numbness (hands/feet), fatigue, vertigo

(sometimes) and gait/ataxia come to mind. I fell

on my face last summer after Dr. M told me to go

excercise. Dr. M is an LLMD here in SEA.

A lot of other shady things happened. I fired her.

LLMD does not always = good doc and saint though

I think that it does most of the time. I agree

about Dr. G

Px,
J.
 


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