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» LymeNet Flash » Questions and Discussion » Medical Questions » Post Lyme Syndrome vs. Chronic Lyme

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Author Topic: Post Lyme Syndrome vs. Chronic Lyme
NJLyme82
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My first question for those that are more famailiar with the literature is how sure are we that post treatment symptoms in ALL cases are due to persistent infection versus other Lyme-related causes?

While I don't doubt for a minute that in some cases there is a persistent infection which requires abx, how sure are we that this concept applies to everyone?

Lets say I were trying to convince someone, such as a doctor or friend, that post treatment symptoms are due to a persistent infection as opposed to "something else" what studies/established facts could I cite?

Again, I'm not expressing any doubts, I'm just trying to learn.

I just read the wikipidea article on Lyme and it was pretty attrociuos in its one-sidedness toward the IDSA poitn of view.

If I am going to convince people of the other point of view and not sound crazy, I need some solid evidence behind me.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

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SuzyQ
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My guess is that 6 weeks of Doxy is not long enough to make a recovery that can be sustained over time. Consider yourself fortunate if your symptoms have not continued to worsen over the years. I would check in to seeking out a LLD to see if a full recovery might be possible.
SUZY Q

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Keebler
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-


Wiki - for some things is great. It's awful for lyme. Wiki is never a place to stop research, however. As you may sense, there is way more to it.

Have you searched PubMed, ILADS- all the articles and presentations to the left of home page, - from another group of doctors studying stealth infections, Nicolson's articles from just few months ago? He goes into depth about Bb and Cpn and what can happen, if untreated or undertreated.


Also, realize that lyme rarely travels alone. To treat lyme is to treat co-infections. Without full assessment and, if present, attention the lyme treatment won't stand up.

And, one simply cannot have good lyme treatment without addressing the effect on the liver and adrenal system - and offering protection and support. Leaving that out often spells failure.

-


I'm away from my home computer and am lost on the one I'm using.

I only know ILADS' site by heart - www.ilads.org

Especially see the Goldings article.

I will see if I can find some of the links I frequently load on - from a previous post of mine somewhere here.

Nicolson's article is brilliant.

See the NEWBIE thread at the top of the medical forum.

cross search at this site for both terms, look as Wild Condor's site, LDA's site, the medical abstracts through lymenet (here - menue at the left of page).

These are just some places to BEGIN. Alan MacDonald's (or is that McD ?) work is also very convincing and fascinating. You may find that through ilads.org

AND - patient stories and books by doctors. Books at Amazon.

Next - ask the researchers themselves. Believe me, once the life cycle of the spirochete is understood NO ONE can say 3 weeks or 6 weeks or even 8 weeks' of treatment is long enough.

And, certainly not with just one drug. Each stage of the spirochete's life requires a different drug - often overlapping. (And, again, the individual's co-infections often complicate treatment.)

(Savely says it would take much longer).

One must understand the spirochete to begin to know lyme - but then that's still just a start.

Also - the DVDs from LDA (link to the left) and from ILADS - it will take WEEKS to read and view everything, but you will be amazed at the research that exists.

-

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bettyg
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nj,

look for TREEPATROL'S NEWBIE ARCHIVE AT TOP OF MEDICAL, start reading thru there ...


he has documentation on all things like that!!!


when you find the sources; please post answers to your post here saving someone else valuable time! big thanks!
**************************** [group hug]

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seibertneurolyme
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If your question is "How to convince a doc that you do not have post-Lyme or post-Lyme autoimmune syndrome or whatever label they are using" then in my opinion, the answer is you will not convince them.

I would not waste time and money trying to convince someone that chronic Lyme exists.

If it is a family memeber or friend then they should be sble to see firsthand from your symptoms that you are sick. If it is a doc then as I said it is highly ulikely you will change their mind.

This is my opinion based on hubby's experiences with many docs -- quit counting after the first 65 in the first 5 years.

Tincup posted once that the best question to ask a doc to see how Lyme literate they were was to ask how they would treat the cystic form of Lyme. If the doc can't answer that question then you already know more about Lyme than they do.

Good luck and please try to find a LLMD.

Bea Seibert

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Keebler
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-

Ah, yes. Bea has the answer. You can learn more for yourself, but you will NEVER convince a doctor who has a closed mind.

And, even if you did, that's like trying to train a EMT student at an accident site how to do emergency care. You need someone who is up to speed NOW.

Most of the people here and most lyme patients do know much more than most doctors about THIS (not everything, of course). It's all we can do to learn what we need to and it's unfair to even be put in the position of having to convince a doctor to treat you.

I hope you can find someone who is truly an expert. There are many avenues possible and no one plan is right for everyone. That's where the seasoned LLMD comes in.

--

Oh, I went back to read your question again (it takes many tries) . . . you said you need to convince "people" - regarding co-workers, family, friends, etc. well, the sad truth is that you can offer materials for them to read or watch. I've had to leave it there. Some get it some don't. But it undermines my integrity to have to defend this illness and the effects of that. I don't have the endurance or speech capabilites anyway. It's very tired to talk at all.

Also, I don't tell everyone. Or I'm vague with saying I have dizziness all the time. that's enough for most and to explain why I walk like I'm drunk, etc.

Still, for those closer, share information. they are free to do with it what they will. Hopefully, they will rise to the occasion and to the relationship.

-

I have one link that will lead to some of MacDonald's work. It's a current thread about one of his lectures:


http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=068268

Topic: University of New Haven, Dr. Alan MacDonald , lecture

Posted by Al.

-

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Keebler
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--

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=016292

Lyme Disease Obituaries


-

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NJLyme82
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Thanks for the answers!

I will look into compiling some sources together.

Excellent point about not being able to convince doctors. Most MDs are probably close minded and not worth he effort.

However, I have a few friends in med school and a cousin who's an MD. I figured they are more likely to listen to me and have a meaningful conversation.

I figure the more people I talk to about this the better.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

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Keebler
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-

see ILADS - www.ilads.org - Treatment guidelines

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

www.lymediseaseassociation.org/ Lyme Disease Assoc.


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


http://tinyurl.com/2dmvs2

From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
By Virginia Savely, RN, FNP-C

*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.


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

While the informmation at the site below is beyond the common TBD's, often the infections can coexist with lyme/TBD and should be considered in evaluation.

The Institute for Molecular Medicine

A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.

www.immed.org/

www.immed.org/illness/clinical_testing.html

Patient Clinical Tests


For chronic illnesses (CFS, FMS, RA, among other illnesses) that could have an infectious component, The Institute for Molecular Medicine . . .

- Continued at link.

Other tests are discussed, too, such as Cpn, HHV-6, etc. And, as with Bb, specialty labs are best.


(I was looking for the link to a particular article. I can't find it but you can cross search the term "neurodegerative" with "Garth Nicolson" and you may find it.)

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

This is why ILADS' doctors - LLMD's are best for evaluation.
As discussed in the Savely article - above - the IDSA member doctors have discounted much of importance.

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.


- cont'd at link.

Printable version: www.ct.gov/ag/cwp/view.asp?a=2795&q=414284&pp=12&n=1

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

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daise
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Hi NJLyme,

Post Lyme Syndrome is a term used by IDSA (Infectious Disease Society of America) to deny that we have chronic Lyme disease.

The IDSA was investigated by Connecticut Attorney General Blumenthal and it's members who wrote the IDSA guidelines were found to have conflicts of interest: their guidelines are fraudulent.

Your local IDSA doctors will not take Lyme seriously at all (but for a tiny handful in this country.) Same with the overwhelming majority of conventional doctors.

In our pain, our grief and our torn-up lives we are commonly abused by conventioanl doctors.

They throw things at us which more or less say that all of our signs and symptoms are all in our heads. Appointment over.

Essential: Go to www.ilads.org to the left menu and click "Treatment Guidelines" which brings you to two documents: ILADS Guidelines and also Dr. B's 33 pages of guidelines for 2005. Print both! That is essential reading.

You need to be evaluated by an LLMD (Lyme-literate MD.) You can post for one in the forum for "Seeking A Doctor."

Stay with us!

daise [Smile]

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sparkle7
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I'm still not convinced that taking more &/or larger doses or combinations of abx are the cure.

I'm not for or against either IDSA or ILADS.

I just don't know if the abx work. They just didn't seem like the right thing for me to do.

I had no change or improvement after taking various abx for 8 months. I think I just got worse.

At times, I felt like I was herxing but I was wrecking my intestines & getting yeast issues. I think that was damaging to my immune system. It didn't seem helpful in the long run.

I DO think that if people want to take them, they should be able to.

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Greatcod
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In the animal studies, on dogs, chimps and mice,
spirochetes are found after antibiotic treatment.

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Keebler
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-

This is something that I referred to in a post above. In the 17-page article listed below, the author discusses chronic lyme at length, as well as other chronic stealth infections such as Chlamydia Pneumonia (Cpn).

http://sacfs.asn.au/download/Nicolson_6LabMedicine2008ss.pdf


Chronic Bacterial and Viral Infections in Neurodegenerative and Neurobehavioral Diseases
Garth L. Nicolson, PhD

(Department of Molecular Pathology, The Institute for Molecular Medicine, Huntington Beach, CA)
LABMEDICINE

Additional research on chronic Cpn can be found at www.cpnhelp.org - research article tab upper right of page.

The author has quite an extensive web site at www.immed.org where work on mycoplasma is also detailed.

-

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sparkle7
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I was tested for mycoplasmas 2 times - once by Dr. Nicholson's lab. It wasn't an issue for me - luckily.

It may be for others, though. It's supposed to be related to Gulf War Syndrome.

The only thing extensive blood testing came up with for me was slightly elevated Epstein Barr. My doctor said it was pretty common these days.

I did have CFS about 20 years ago...

The doctor felt my bood had an issue with fibrinogen - so I took some Lumborkinase for a while & some other supplements.

When I retested after about 6 months or so - my blood was much better.

It's really good to get these things checked out but I ended up spending about $10,000 on the tests, supplements & IV drips.

I still have Lyme...

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Keebler
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-

Another article of interest may be:

Biochemistry of Lyme Disease (Feb/March 2006)
(Bradford)

www.townsendletter.com/FebMar2006/lyme0206.htm


-

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METALLlC BLUE
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E-mail me, I've been doing research on Chronic (Persistent infection) for a few months now. I've accumulated over 100 studies off Pubmed alone regarding the survival of Borrelia Burgdorferi with currently accepted standards for antibiotic therapy. I've organized and cited all sources, and summarized (Using bolding) to help the reader get through the material quickly.

[email protected]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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hcconn22
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The anti experts with all the money and resources in the world CAN NOT prove that chronic lyme does not exist. Oh and do they try.

The pro lyme doctors with little or no money CAN NOT prove that Cronic Lyme exists. Although they are getting closer.

So this leaves one to read the studies and feel their symptoms and decide for themselves if longer term treatment is right for them.

--------------------
Positive 10 bands WB IGG & IGM
+ Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest

And still positive ELISA and WB two years after IV treatment
http://www.lymefriends.org/profile/blake

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Greatcod
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I'm thinking that another consideration is that the ILADS docs have treated tens of thousands of
very sick people whose health has been restored by long term ABX..Why would this be if the ABX weren't killing something bacterial??

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ldfighter
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quote:
Originally posted by NJLyme82:
My first question for those that are more famailiar with the literature is how sure are we that post treatment symptoms in ALL cases are due to persistent infection versus other Lyme-related causes?

I don't think it's necessary to say "ALL" cases are due to persistent infection.

The IDSA says NONE are. The argument against this is that SOME are due to persistent infection.

Then, when you look at what's known about the microbiology of Bb & case reports documenting persistent infection after antibiotics (go to www.lymeinfo.net for articles), studies indicating improvement after longer abx regimens, and the experience of ILADS docs as Greatcod said (data we need published), it's clear that this "SOME" number is probably very large. We won't know the exact number until there's a gold standard test, which we don't have.

And right now there's no good evidence for any competing explanation.

"Post-Lyme syndrome" is not an explanatory hypothesis, it is a descriptive wastebasket label resting on a collection of "maybes" - maybe it's autoimmune, maybe they were misdiagnosed in the first place, maybe they're crazy. No evidence for any of the above.

If the IDSA stood by any one of those "maybes" in isolation, it would be laughable. So they strung them together and claimed, with their magic wand, that ALL people with persisting symptoms must fit in there somewhere! (they call this science?)

Meanwhile if you bring all this up with a skeptical person, throw in the fact that undertreated, persistent Lyme infection can destroy lives (those case reports). So risk/benefit ratio: the risk of NOT treating a possible Lyme infection is far worse than the risk of acne meds.

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SForsgren
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I do think that there is a lot to be said for auto-immunity creating many of the symptoms in chronic Lyme. I also believe that ABX will lower the load of infection though not erradicate it. That said, at some point, I think the auto-immunity is a bigger issue potentially than the infections themselves.

Learning more about how to address the autoimmune aspsects of the disease is an area that I am looking into further.

--------------------
Be well,
Scott

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ldfighter
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Just to clarify I agree with Scott that autoimmunity is a factor in producing symptoms, the evidence of molecular mimicry with OspA for example. In terms of symptom relief this line of research is interesting.

But I don't see the evidence that it's a hit-and-run situation with the infection being gone and autoimmunity an independent, ongoing process. That's what "post-Lyme syndrome" implies in terms of autoimmunity.

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lymebytes
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Study all you can - every link at www.ilads.org

--------------------
www.truthaboutlymedisease.com

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NJLyme82
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Thanks for all of the replies.

ldfighter, I especially like your reasoning and I think I would agree with you.

I am in the process of looking through all of the research.

Maybe I'm overly optimistic, but I believe its only a matter of time before the scientific truth comes out about chronic lyme and we begin to make progress in developing accurate diagnosis and effective treatment for this disease.

More and more people are getting sick and they're not recovering. This is a problem that can only be ignored for so long.

--------------------
I was diagnosed with and treated for late stage Lyme in 1991 with 6 weeks of doxycycline. Initially felt better, but then developed health problems that last until today.

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