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» LymeNet Flash » Questions and Discussion » Medical Questions » Playing devil's advocate - if not Lyme then what?

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Author Topic: Playing devil's advocate - if not Lyme then what?
coltman
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I have spent all my free time since my dx in july reading about lyme -everything from boards like this ,individual patients testimonials and blogs , doctors blogs,treatment protocols,a book to serious research papers on drugs , various infectious diseases , chronic treatments, immune system etc. And so far the issue is not as clear as I d like

In many cases the theory about chronic lyme sounds logical and fits the profile in most cases, sometimes even suspiciously well. - My own objectivity is seriously tested for such convenient disease (fits perfectly for everything,no reliable testing , no reliable cure so cant have proof by treating it) because I need to address my symptoms and I seem exhausted other alternatives

There are many problems with it though -pathogenesis of chronic lyme is not quite clear and not proven- it is mostly speculative. Tests are unreliable (

We know a lot of stuff which is associated with lyme - hormonal problems ,mineral and vitamin deficiencies, neuropathy , demylienation, arthritis, various pain, fatigue , mental impairement. All of which could be attributed and explained by various other diseases and conditions

It is kinda one of the strong points against lyme- if it was responsible for substantial portion of MS/RA/Alz/CFS/Fybro and such , then we should see the dynamic where cases of those disease are correspondingly reduced in non -endemic areas ( sub equatorial regions do not have tics, nor lyme). I have not run across any research stating that its indeed the case. On the contrary on one ALS board person presented paper on ALS cases in Arizona vs some lyme endemic state. And ALS cases per 1000 of population did not differ substantially

Other problem is treatment protocols do not lead to reliable cure, which, given bacterial nature of disease should happen (and this is postulated in a lot of mainstream papers, many of which are basis for IDSA guidelines) .


Another thing is presentation- from patient testimonials the clinical picture is insanely distorted. I mean its a cocktail of A to Z symptoms, with various stages of severity. I am aware that chronic multi-system disease could cause them (such as syphilis for example) but it is still quite disturbing seeing absolutely everything could be described as "Lyme". Especially that I personally do not experience nearly same set of symptoms and/or severity (as many testimonials say - I mean really , can we all have same thing)?

All those part is extremely frustrating - as its typically a hallmark of a disease which is not understood at all. Something like HIV for example while having no treatment available is a lot better understood and reserched. "Chronic lyme" not nearly enough solid evidence to even base diagnosis on .

Treatment is completely empirical, basically shooting heaviest guns( every single ABX class known ) at invisible but suspected targets, with no reliable criteria of effectiveness. I wouldn't even venture into alternative treatments since the data for them is incredibly poor.


Now having said all that at this point I have really no other plausible option but conclude it must be some sort of chronic condition. .Could be of any origin thought -bacterial ,protozoan, fungal or viral . All those things are very poorly tested and diagnosed even worse .

Albeit I have hard time figuring out what can cause lyme only bands on IGM - except some cross reactivity with something mysterious -since it was not shown that lyme specific band are product of cross-reaction afaik


Opinions? Facts? Something I am missing?

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seekhelp
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You bring up valid points. I have to get some sleep now. I share your concerns, but have no doubt within 24 hours this inquiry will be blasted into oblivion by posters here and I'm sure comments stating just listen to your LLMD. [Smile] Doubting a diagnosis is not a favored opinion on this forum!!

My opinion is IF the treatment shows results (and in a reasonable time frame), I will believe in this disease fully. Even this is flawed thinking as a wide range of Abx could be hitting 1,000 other unknown bacteria types outside of Lyme that could be a culprit. If so, I don't care. I'd be thrilled and consider myself lucky. I'm not that picky.

I will never become a true 'lyme advocate' unless I see this happen. Sorry if that bothers people. Treating something for 5,7,10 years with no improvement to me = wrong diagnosis most times (not all if one is severely ill and beyond repair). THis beyond repair concept applies towards all illnesses really.

As I've said before, once 5+ years pass, who knows why things changed. That's a long, long time. Things happen, stuff comes and goes. Improvement due to treatment doesn't necessarily mean a direct correlation over that many years. It could be no doubt, but it could just as easily be other things.,

I especially agree with the symptom variability. It's crazy and almost unbelievable. One person says their finger, next their toes, their stomach,muscles, bad pain, no pain whatsoever, eyes, heart, breathing, neuropathy, chills, sweats, constant fevers, constant low temps, anxiety, and so on.

Some people can run 10 miles a day...some people can't get out of bed. Every illness has a range of severity, but this one is mindblowing and logically these giant differences don't make sense. I highly doubt you see an ALS patient running if you interviewed 1,000 of them.

Coinfections, if truly as prevalent as thought, offer an explantion, but they are like chasing a shadow as well. Sometimes there is comfort in having a diagnosis that cannot be proven otherwise. For others, it is a nightmare. All of us being ill want to be able to say..."FINALLY, I hit the nail on the head." When this gets shattered, it causes resentment I believe.

There is a simple equation. If negative for all typical labs and symptoms exist = MUST BE LYME. I don't believe the universe is that small. Trying to treat sure is a reasonable choice when given no others though. What choice do we have? LLMDs know this too.

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JamesNYC
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After all your posts, now you're doubting yourself?? That's hysterical!

Here's the simple answer: Coltman, you are thinking about this WAY too hard. To the point that you have confused yourself.

The main sx are still the same. Other sx MAY be due to lyme, maybe not. But the main ones are pretty universally consistent. Plus, you have antibodies to back up your sx.

Take the abx already and see what happens. Stop agonizing over this.

If you have it, you could get better. If you don't you won't change. Pretend you have acne and the Dr prescribed a year of doxy.

Don't worry about everyone else's dx. Just yours. You have enough evidence that you spent 2+ months obsessing about lyme. What are you going to do now, obsess about everything else that *might* explain your sx rather than lyme?

If so, you should become an ID MD. LOL

Where in MA are you?

James

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timaca
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Get tested for everything your doctors can think of, starting with the obvious issues, iron deficiency, B12 deficiency, Vit D deficiency, thyroid issues, cardiac problems, neurological problems, gluten intolerance etc.

If all that comes back normal, consider infectious pathogens. If you've been out of the country, see and ID doctor for the best care. If you haven't left the country get tested for HHV-6, EBV, lyme and Co (use several labs, not just Igenex), enterovirus and Cpn.

Focus Diagnostics is a great lab for most pathogens, ARUP is best for enterovirus.

See: www.hhv-6foundation.org and www.enterovirusfoundation.org for more info.

I have had the best 3 1/2 months in the last 6 years of my illness. A friend of mine is mostly well. Here's a post I wrote on the HHV-6 forum yesterday on her:

"Here's an update from Brita. She is a good friend of mine, that lives in the same town as I (even though I pretend to not know her in some of her postings to this group...). Her story is here:
http://hhv6foundation.proboards.com/inde....splay&thread=36

We talked last night and she gave me permission to post her update. (She's too busy to post) She has been on oxymatrine for one year. She has also been on valtrex for one year, and previous to that she had been on valcyte for 11 months, and minocycline for quite awhile (close to 2 years???).

Anyway, she is doing quite well. She is in nursing school now, and putting in 10 hour clinic days without much trouble. She is not symptom free. But, on a scale of 1-10, with 10 being running marathons (which she used to do), she is an 8. We figured a 9 would be symptom free, with moderate exercise. Since she is not symptom free, but is exercising some (I would say moderate from what I've seen), and living a full life, she feels she is at an 8. If you read her posts, you can she where she used to be.

The pathogens she has battled include Q fever, enterovirus, HHV-6, EBV and possibly lyme. I hope this encourages those who are struggling."

If you are not making progress, and it's been well over 6 months, you really need to consider that you are not treating the right thing. When taking antibiotics or antivirals, I knew at about the 4 1/2 month each time if it was working or not.

This is not an easy journey. But the best way out is to get evaluations by a good doctor (not just an LLMD) and treat the obvious. Hopefully you'll see some improvements.

I'm out of town until Sunday, so if you have questions I won't be able to answer until then.

Best, Timaca
ps...we hope to have a website up and running by the end of the year that explains all this....

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purplemom
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I understand where you are coming from and ask similiar questions myself.

As for the ALS not being higher in endemic areas:
in order for that to be accurate you would need to sift through and ask people where else they have lived and traveled, someone can live in Arizona and take a nice trip up here to NH and get zapped and go home. Wasn't there a guy that lived in the west that had ALS that was Lyme he was mentioned in Cure Unknown. He was an MD and recovered.

"There is a simple equation. If negative for all typical labs and symptoms exist = MUST BE LYME. I don't believe the universe is that small. Trying to treat sure is a reasonable choice when given no others though. What choice do we have? LLMDs know this too. "

That is my diagnosis. I don't have to many choices: either live with this crazy insanity or try some treatment. I am just moving ahead with treatment because it is my only hope to not live with excruiciating pain. Other MDs say I had a virus and this is the aftermath...sorry about that. I can't envision going on like this for years and taking antibiotics for years (unless I see improvement and I have in 3 weeks my neck insanity has cleared up and I can reduce my pain meds)

I think it is good to think but at the same time go ahead with treatment and see if you feel better.
--------------------------------------------------------------------------------

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Pinelady
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Coltman you got it right, if our bodies had the immune capabilities in the first place to

recognize the Bb we would not be in this shape. We have learned much in the history of Lyme and

much more will be discovered. It will just take time. I ask myself stupid questions all the time.

Why is this happening. EMF's, environmental, or is it a genetic change that has made us more

suseptible, or even a genetic change that has made Bb more virulent? But we still have symptoms

and have to treat as it is proven many patients get better. There are lots of things I would like

to see Bb patients tested for. Simian Virus' for one. There are many others that need covered as

associated incidence in Bb. We have to fight for funds to do these things.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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losferwrds
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The lack of decent testing is criminal, neither ILADS or the IDSA have a leg to stand on

The thing that gives the IDSA the edge is they deny chronic lyme, and simply say show me the bugs.

Until someone can find a decent test to do that we very well may be chasing shadows.

I show on and off antibodies to bart, IGG 41, and 20+ white matter lesions, so yes I could have been exposed. But it took 20+ years to get diagnosed, so I was on 20 years of Benzos and SSRIs and told I have GAD. I am weaning off/down on meds, and you know what, the SSRI and Benzo withdrawal sites all withdrawal symptom lists and anxiety/depression symptom lists also fit lyme, so are we all just suffering from stress/the human condition or do a good % of people that end up at the shrink have lyme??

The only thing you can do is experiment with a treatment and see if helps. I took abx for all 4 years of highschool for acne, so trying them for a year or 2 for possible lyme does not seem overboard.

If I have it, I had it for 20 years untreated, I pooped out on Paxil, SSRIs after about 10 years stop working and all the symptoms that led me to SSRIs returned, same with 20 years of benzos, and it wasn't depression, it was neuro stuff, parenthesia, myalgia, derealizationm anxiety, air hunger. So do I have active lyme who knows, tests indicate I was exposed, I fish in the pine barrens and walk on deer trails weekly, and have had tick bites, but do I have chronic lyme, can't prove it? I've been to at least 10 shrinks, all say GAD or Panic Disorder or Depression or combos of all of the above, I've been to 2 llmd recommended from this site both diagnosed me with Lyme, who is right, maybe they all are.

I am not disabled, I am a full time programmer.
I get symptoms on the list that comne and go, and just live with them or mask them with sympton treating meds. 20 years undiagnosed untreated shouldn't I be be bed ridden. Thats the other conundrum why do some people get diabled and others just get nusance symptoms like me??

And what is better, how do you know what better is,I mean you get bit, get really sick, get treated immediatly and get better, you know cause your baseline was 4-6 months ago.

20 years some of the damage has to be permanent.
And if I can't tell if I have bugs in me how can I tell when they are gone, IGGs can remain over 10 years.

Treating Lyme takes a real leap of faith.

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AliG
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"On the contrary on one ALS board person presented paper on ALS cases in Arizona vs some lyme endemic state. And ALS cases per 1000 of population did not differ substantially"

I'm wondering how many people actually move from the East Coast to Arizona because of Allergy symptoms or for other reasons. I understand that's a great place to go if you have issues with pollen and I believe that many people retire there.

"Other problem is treatment protocols do not lead to reliable cure, which, given bacterial nature of disease should happen (and this is postulated in a lot of mainstream papers, many of which are basis for IDSA guidelines)."

You say that you have read so much information. Perhaps the only information you are reading is the same information that the IDSA has written to support their desired conclusions. In order to properly address your issues here, I would have to cite volumes.

Stephen Harrod Buhner's book "Healing Lyme" had a lot of pertinant studies cited. Also, you can take the ILADS guidelines, not Dr.B's "Advanced Topics" but the actual guidelines, and read all of the studies they cite in their references.

If you want to find out how so many people believe information that contradicts the IDSA's studies, you need to read the information they've read. You won't find it reading the same studies that the IDSA guidelines authors wrote & then read.

Perhaps if you view the IDSA guidelines hearings, it might shed some light on the opposing viewpoint for you.

"Especially that I personally do not experience nearly same set of symptoms and/or severity (as many testimonials say - I mean really , can we all have same thing)?"

Have we all developed the same immune systems & do we all share the same genetics?

Do we all have the same stress & capacity to deal with it?

Do we all eat the same fods & get the same amount of sleep?

Do we all have the same habits & lifestyles?

Do we all breath the same pollutants?

Have we all had the same chemical/pesticide exposures?

Have we all had the same childhood illnesses or eaten the same childhood dirt?


"Treatment is completely empirical, basically shooting heaviest guns( every single ABX class known ) at invisible but suspected targets, with no reliable criteria of effectiveness. "

[confused] Who does this? [confused]

"Albeit I have hard time figuring out what can cause lyme only bands on IGM - except some cross reactivity with something mysterious -since it was not shown that lyme specific band are product of cross-reaction afaik"

I believe that those who fear that the difficulty in eradicating these bacterium, which are capable of drilling into our tissues, mutating, cloaking themselves in our DNA and impacting our immune response, is due to the possibility that it may be a weaponized borrelia might share your questions and concerns.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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lou
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Is ALS a reportable disease? Where did these numbers come from? I am definitely a skeptic now on numbers of people with diseases, because the surveillance system is so wacky. The reported lyme numbers are never anything like the actual number of cases. They change the system, they require test results that only represent a fraction of patients, they hound doctors so no one wants to report cases, etc. etc.

Look at the state of Georgia where there were spirochetes found in ticks and cases being reported in the early 90s, until the CDC announced lyme was not in Georgia. Even tho people met the case definition and it was found in ticks! So then no one would report cases and the numbers crashed.

With a system like this, how could you make any kind of comparison?

The other thing to remember is that this is a polymicrobial disease. The ticks give us a soup of pathogens, some of which are not identified or treated. And our immune systems are then compromised to the point that latent germs are reactivated.

You are looking for a simple answer, and this is a complex situation.

I know I have lyme. The babesia was seen in a blood smear. And there are other players as yet unidentified and untreated, and several reactivated germs.

The world is an uncertain place, and medicine is, it turns out, not so "modern" after all. You are looking for certainty, solid ground....sorry there just isn't much anywhere, lyme or otherwise.

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Pinelady
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Good points. Did anyone see the interview on the

news with the agent that had infiltrated the

terrorist group that was stationed in Miami FL.?

It was very disturbing. He said he was with the

group that did the atrocities of 9/11 for months

and knew the man that did it was planning

something big. He said he told the top officials

and they told him to leave him alone repeatedly

and to go after the little guys who were not so

involved in. He said he lived with them, he

prayed with them and he worked with them. He said

after 9/11 he had to quit

because he was not working for people who were

really interested in stopping crimes. The FBI and

CIA declined comment. This was on national news

Mon. Now what do you do with top

government agencies who did this? How can you trust any government agency?

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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lymielauren28
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For myself personally, I KNOW that I have Lyme. I was extremely outdoorsy and got into a bed of ticks. Came home one day after being in the woods and pulled more ticks off of me than I could count.

About 2 weeks later I got sick. It was fairly mild the first year or so and then all hell broke loose.

After 2 and a half years of desperately searching for a diagnosis, I was finally tested for Lyme. Bands 41, 58 and 66 came back positive.

Not only can I correlate my illness with the tick bites and the positive bands but I responded almost immediately to antibiotics.

After 3 years of treatment I am much better. Not cured - and I honestly don't think I will ever be - but I have a life now and I don't spend all my time being sick.

I'm not one of those people that thinks everything is Lyme. BUT, I DO believe that almost all autoimmune illnesses are a result of some sort of bacterial or viral infection.

Timaca, one of the posters above, has long told others on this board that if they're not responding to abx then they should go on a trial run of antivirals - I think she's right. For her antivirals were the ticket. For me antibiotics and intimalarials were...

--------------------
"The only way out is through"

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lymielauren28
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Pinelady - you can't!

--------------------
"The only way out is through"

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RDaywillcome
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I believe M.S. is a clinical diagnosis also.

MRI's showing lesions in certain areas of the brain, but so do lyme cases such as my mine.

I've been to many neuro's and was told I did not have M.S..

I find it sad that many who have been diagnosed with M.S., may have lyme.

You need to listen to your LLMD who specializes in lyme and co.'s and ask he/she those questions you have.

Where in MA do you live?

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Marz
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Another thing is presentation- from patient testimonials the clinical picture is insanely distorted. I mean its a cocktail of A to Z symptoms, with various stages of severity. I am aware that chronic multi-system disease could cause them (such as syphilis for example) but it is still quite disturbing seeing absolutely everything could be described as "Lyme". Especially that I personally do not experience nearly same set of symptoms and/or severity (as many testimonials say - I mean really , can we all have same thing)?

Coltman, what you have said in that paragraph is the exact thoughts that have stymied me since learning about lyme from this board years ago.

I have wondered if it's the nature of the "beast"--it's corkscrew shape that allows it to migrate to just about any part of the body that allows it to cause varying symptoms? And to get to some places that a blood-borne only bacteria cannot reach.

I've also wondered why I don't have as severe symptoms as others.

Those doubters and MDs who say there is no such thing as chronic lyme or say only a certain symptom range have lyme have a point.

Yet, I remember how relieved I was in 2006 when I finally had a name for what I was experiencing after tesing positive IgM.

It must be the co-s that muddy the waters. But when you don't even have classic symptoms for those, or a positive test, it's pretty hopeless.

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lou
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quote:
Those doubters and MDs who say there is no such thing as chronic lyme or say only a certain symptom range have lyme have a point.
Sorry marz, you are misinformed. Lyme has been found in people and animals after what was supposed to be curative treatment. Autopsies have found it, biopsies have found it.

Other bacterial infections are known to be chronic.

If you get lyme and it is not treated at the acute stage, then it can become chronic. If you get lyme and are not treated adequately, it can become chronic. You need to read the medical definitions of the words chronic and acute.

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Marz
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Lou, I totally agree with you.

I only meant that it would seem to them that their point is valid since most bacteria target a certain area or body system. eg. pneumonia, the lungs, strep, the throat, staph, the skin, etc.

And unless they've done the research (which they should do to discover the uniqueness of the spirochete) they would believe antibiotics would get rid of it.

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dguy
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Coltman - I've gone through similar speculation, and have become comfortable with the explanations I've derived from years of research and personal experience, as related below.

Chronic lyme is a disease that mimics autoimmunity. The symptoms we experience are related to excess immune response, often at sites of trauma. At injury sites, our immune system is temporarily suppressed so as to allow for cell repair, however this reduction also allows Bb to colonize in greater numbers. When cell repair is done and immune activity is no longer suppressed, the immune system attacks Bb leading to inflammation and pain at the site. Since trauma locations vary randomly from person to person, this accounts for why we can each experience symptoms and pain at different locations.

Regardless of the location of symptoms, most/all of those with chronic lyme can mask their ills via steroids. This supports the idea that excess immune response is involved since steroids reduce immune response. Unfortunately, steroids are not a solution since they merely treat the symptom rather than the cause, and by reducing the immune system's fight, they allow Bb to gain an even stronger foothold.

Someone with idiopathic autoimmunity may also experience all of the above, but those with chronic lyme can distinguish their illness by monitoring their reaction to antibiotics purported to weaken Bb. Someone who does not have chronic lyme will experience little to no herx from such abx. Conversely those will lyme will herx.

You had mentioned lyme symptomology being similar to that of syphilis. This is not surprising since the bacteria responsible for lyme, syphilis and sarcoidosis are quite similar (spirochetal), as well as quite different from other bacteria.

As for why eradication is a lengthy process, Bb replicates very slowly, and is most susceptible to killing only during its replication phase. Thus abx therapy must be continued for a long time. As for treatment failures, some research indicates vitamin D blocks the action of the immune system against Bb. For its survival, Bb exploits this mechanism via extra-renal conversion of 25D to 1,25D. Vitamin D's involvement is clear since most chronic lymies exhibit abnormal levels: low 25D (the form commonly tested), and high 1,25D (the form less often checked).

The search for the best treatment is inhibited by the lack of a good test to check infection levels. We really need some sort of "Bb count" test to objectively reveal how well a treatment is reducing our Bb levels. Until then we are all somewhat blindly stumbling around for a solution.

It's seems logical that we cannot eradicate a Bb infection without proper action of our immune system. Such proper immune system activity is tough to distinguish from the chronic autoimmune like reaction we experience while spinning our wheels against Bb. Consequently, judging progress is difficult because it feels more or less the same as failure. The invention of a good test would be a major step forward.

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Wimenin
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Does it really matter what the disease is?.. the simple facts are you cure the symptoms, the patient feels better. If this was called XYZ disease and the solution was taking 3 different kinds of abx and supplements, and you did that, and you felt better over time, yuo wouldnt care what the disease was called or where it came from.

You cant keep going down the what if path or youll drive yourself nuts. Lyme is a clinical diagnosis, and if youre someone who also tested positive serologically, feel fortunate. And if youve been clinically diagnosed, and serologically, and taken abx and reacted, that would equate to empirical evidence as well.. What else is there for confirmation?

Keep it simple.. you have symptoms, you get treatment, you get better or worse.. If you have no more symptoms, youre cured or in recovery. You dont get better, you change your treatment regiment to something else.

Lets also not forget that if you had lyme encephalitis/meningitis (I did), all the neurological things, which mimic other neuro diseases can/will occur.

Life is too short to wonder and continually second guess... get diagnosed, get treatment, and get back into your life...

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Nicole_Denise
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I can say that MS is a clinical diagnosis. Usually, the plaques showing up on an MRI is when they feel certain it is MS (if they don't know about Lyme), but prior to that, it is clinical.

I know several people with MS, and their symptoms are all very different. Some people get pain from MS, some people don't. Some people progress quickly, some slowly.

So it's not unreasonable that people with Lyme disease would have varying symptoms. I think the important thing is to notice what systems the symptoms involve.

If you look at what systems/areas of the body (so nerves etc.) are involved, the symptoms seem much more similar.

As for whether other diseases are really Lyme, or vice-versa, I'm not a doctor or medical researcher, so I can't really say.

It is important to rule things that can be accurately tested for. For example, Autoimmune Diseases, HIV, Syphilis etc. I didn't see an LLMD until I'd had 15-20 blood tests.

But I agree with the people who say to try treatment. Going on antibiotics for a couple of months is NOTHING (they give it to you for acne for years). If you don't notice a difference, then try something else (you can always come back to antibiotics). If you notice an improvement, does it really matter why? Or does it just matter that it is working?

So Coltman, I can see where you're coming from with my concerns, but if I were you, until I was feeling better, I wouldn't worry about the bigger picture. Fix yourself, and then worry about this.

If you really, really want to know, I would think that you should start trying to contract researchers. There are people on both sides of the Lyme debate doing intensive research. Instead of reading articles you find by chance, take some time to discover who the lead researchers are, and read their papers.

P.S. I think reading the IDSA papers is as important as reading the ILADS papers, no matter who you agree with. You can't form a educated decision without hearing from all viewpoints.

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JamesNYC
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There are different strains of lyme which cause different sx (it's in Cure Unknown). There you go, it explains much of the differences in sx.

Often, it's called "autoimmune" when they can't find a pathogen for your immune system to fight. Just because they can't find it doesn't mean you don't have an infection.

James

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coltman
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Wow great replies , thanks guys. And , Timaca, thanks for virus information - I'll definitely check it out.

quote:

I am not disabled, I am a full time programmer.
I get symptoms on the list that comne and go, and just live with them or mask them with sympton treating meds. 20 years undiagnosed untreated shouldn't I be be bed ridden. Thats the other conundrum why do some people get diabled and others just get nusance symptoms like me??

Wow. You just perfectly described my thoughts in this area. I estimate I been infected for 15 years, or even more. I did not even think much about my symptoms for a while (nuisance I brushed off day to day), - I had/have some serious problems with fatigue /depression, but nowhere close to being bed ridden.

And like you I have full time job in IT , despite noticeable neuro symptoms (though I am not performing nearly as well as I should).

Now on other hand you guys mentioned the immune effects of infection, I totally forgot to include that in my original post, while this is very important piece about my uncertainty with lyme.

I mean - there are speculation that a lot of symptoms and even damage are caused by immune disregulation .It could be lyme, could be some other l-form bacteria. I tried hard but so far I don't even know where to stand regarding immune response - should I supress it (so I dont get autoimmune problems? Should I support it? And which parts of immune system? Th1 or Th2 - I read completely opposite information regarding both!)

The whole lyme vaccine story - it seems merely exposure to some proteins in BB is alone enough to trigger autoimmune response

And then we have Marshall theory (dissmissed by IDSA and ILADS alike btw). That whole vitamin D 2.25 -1.25 chain and immunosuppression effects - makes lots of sense. Though I am trying to avoid and dismiss whole thing subconsciously - mostly because I wont be able to comply with protocol and keep my job - i wish someone made more sane protocol based on Vitamin D immunosupression theory


Immune part is extremely interesting as I have gut feeling there is true cure hiding there, but I wasn't able to determine the approach I would be happy with . In russia some doctors are more experienced with using immunomodulators ,we have quite a few good drugs one the market and there is plenty of mainstream clinical research done on them .

So I analyzed several treatment protocols for chronic infections (TB, Syphillis, chlamydia) and it seems to hold lots of promise (mainly immunomodulators improve abx efficiency up to 8 fold and make for faster recovery) , but given the unclear nature of Lyme and its possible and very probable effects on immune system I am not sure whether those protocols are applicable and will not make things worse.

The the other part is of controversy is this damn "herx" (which many think is supposed to be a measure of therapy efficiency). I mean its another of those undefined things you can fit everything and kitchen sink underneath it - reaction to abx, your normal day to day symptoms (which were present even without abx) and then "bacteria die off" theory .

I had a bad case of pneumonia in my teen years. It was left untreated for 2 weeks or so (yeah socialized has its drawbacks), I was delirious and in 104 degree fever whole time, -that was disease. Then when it was finally diagnosed I started abx, within 3 days I could walk. I had not see any "herx". Just straight from "damn I am really about to die" - to WOW - its gone in 1 week!

As my only treatment for Lyme so far I been on 400 mg doxy (even did 600 mg a few days) and I cant say I felt much out of ordinary . Yeah I had episodes of symptoms flaring up -but they were not quantifiable worse or much different than the symptoms just a month before.

quote:

Does it really matter what the disease is?.. the simple facts are you cure the symptoms, the patient feels better. If this was called XYZ disease and the solution was taking 3 different kinds of abx and supplements, and you did that, and you felt better over time, yuo wouldnt care what the disease was called or where it came from.

Well if everybody felt better after 3 abx I would be happy to follow the suite. Problem is - seems almost nobody is cured by it! 1 year just to get "better" - is beyond my comfort range for something supposed to be a working cure.

I have no choice really but do it - as there is no other options . But I see people doing same protocols I am about to do and they not cured.

There is also the whole concept of making it worse - possible resistance build up, driving too much of it into super resistant l-form and cyst ,etc etc... That is my main concern
If I hit it - I want hit it HARD. But there is no consensus what protocol is actually able to accomplish that.

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glm1111
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Worms and Parasites are what I found to be the biggest problem. After 4 yrs of antibiotics including 6 mos IV rocephin it was antiparasitics herbs and salt/c that started me on my road to recovery.

Willy Burgdorfer found adult Filarial Worms in the ticks he dissected and as an aside found the spirochetes.

Too much focus on bb and not enough on treating these worms. I have seen many times people posting about crawling stinging and biting sensations.

Check out

www.lymephotos.com

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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susank
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I, too, have my doubts. If I have LD - how long have I had it? And why me? I spent years in the woods mounted on horse, hiking with dogs and birdwatching. Other people that I know ride/walk those same trails are not sick.
Just somehow does not make sense.

Dguy - your info about trauma sites. I have been wondering about that. It seems like wherever I have hurt/been injured those sites now excruciatingly painful.

ie my right shoulder. I know that I had a partial tear (MRI) about five years ago - no surgery - only PT and meds - and thought it had healed.

Then whatever hit me hard three years ago - (first symptom eyes sensitive to light) (which ironically pushed me to ride in the woods/shade even more!) everything started snowballing.

More and more symptoms - and pain - and my right shoulder is killing me. I need to do another MRI - but the noise of the machine - don't think I can tolerate it now.

So - did I injure my shoulder again - or is LD
causing pain at that trauma site? Interesting.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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dguy
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SusanK - all my most troublesome/painful body locations are ones at which I experienced some kind of injury/trauma/stress after getting bitten. I think joints fit this category because merely in normal use they are natural pressure/stress points (walking, lifting, opening bottles, etc.). So to me its no surprise so many of us have painful joints.

Light sensitivity is fairly common in those who have disrupted vitamin D levels. It's probably related to D being the sunshine vitamin. I was getting terrible headache pain for years until I reduced my sun exposure, and reduced my D levels.

For many years I had pain at a surgery site. That is something that is virtually gone since taking abx. I'm not cured yet though.

Coltman - I has similar thoughts about herx, but I have observed my herx reliably cycles with my pulsed abx regimen. It also varies with the type of abx. As for hitting the infection hard, I don't know that such an approach will get you well any sooner. With Bb reproducing so slowly, many say you need to be on continuous abx for a minimum of 18 months. I'd not want to do agressive, high-dose therapy for that long because it seems to increase the risk of side effects such as yeast infections. Of course, YMMV.

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AliG
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I also believe that being treated with ABX for other infections, over the years (bronchitis, respiratory tract infections, etc...), may periodically take down the bacterial load, thereby altering the individual presentation in long-term infection.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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