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tarnalberry

Suspected Fibro Dx

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Mostly just a vent here...

I go in to a rheumatologist on Thursday, to see what she has to say/do on the subject, but my GP thinks I might have fibromyalgia. He ran a whole host of blood tests to rule out lyme, lupus, RA, hypothyroid, deficiencies, iron issues, and I think one other thing. All turned up quite normal. (Yes, he ran the better tests for hypothyroid; no, it wasn't the fanciest lab for lyme; no, the vit. levels weren't borderline... etc.) Quite frankly, the achiniess, the tender points, the fatigue, the light sleep, the dysthymia, the light/sound sensitivity, restless leg, and waves of more severe diffuse pain all point to FM.

Quite frankly I'm nervous about my appointment. I've done research on the condition. I know that there's evidence of higher levels of substance P in fibro patients, lower levels of serotonin, and common interruption of delta-sleep patterns. I know that most of the treatment is lifestyle based, and I've started much of what I can (pacing myself - though I'm not that great at it, getting regular exercise - though I have a tendency to overdo it, and stress management - though my boss doesn't help the issue, get massages semi-regularly, and do watch my sleep). I've done much of what I want to do with supplements (magnesium, vit D, and B12 for years, have done coQ10 for a while, take 7g omega-3 a day).

That leaves me entering the realm of prescription drugs, and the first line for this is likely going to be SNRI's or SSRI's. Given that it's likely that there is some chemical imbalance at play, it does make sense to treat it, but man that still gives me the heebie-jeebies. My brain chemistry may need to be messed with, but it's still messing with brain chemistry! :lol:<_<:lol:<_<

:rolleyes:

Sigh...

At the same time, I can't keep being this tired and achey. This time around it's the fatigue that's killing me. Last time it was the achiness. Next time, who knows!

So, if you've got a minute to spare, and any useful advice or information, please share your story. I don't promise to take all advice given (I'm not dead set against going on an SNRI or SSRI if I decide I need to try one, as there's a lot to weigh in that decision), but I'd like to listen.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I'm sorry to hear you're dealing with this Tiffany. :(

I have all the symptoms you describe ... I would properly rule out Lyme Disease before you dismiss it ... and, sadly, it requires IGeneX testing and doctor who can read the test ....

I have fibro, CFS, IBS symptoms ... all caused by Lyme.

I hope you feel better soon.

Can you post the bands that showed up on the Lyme test you did have? Most docs use CDC tracking criteria for diagnosis even though it was never meant to be used that way.

I find that exercise, including strength training helps with the fibro symptoms.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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the docs aren't too concerned about lyme for a couple of reasons - I've never lived in or spent much time in a state that has annual lyme cases above a couple dozen, and the symptoms have come on within the past year without a preceeding flu like stint (or bite mark), while I've been in WA, the whole time - again, anything but a hot spot for lyme when they get like a dozen cases a year, all out on the east side, where I haven't been. the new doc may run more tests for it, which would be nice, but it's a long shot, given my context.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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There are no reported cases where I live not even mine because my doctor refused to report my positive test ... I never had a rash ... never had the fever ...

I don't want to push you to it, I just wanted you to know since your doctor is thinking that is important in your case.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Quite frankly, the achiniess, the tender points, the fatigue, the light sleep, the dysthymia, the light/sound sensitivity, restless leg, and waves of more severe diffuse pain all point to FM.

I would be concerned about Lyme with these symptoms. Most cases of Fibro are actually Lyme...thats from studies that have been done. I cant remember the exact percentage but it was high...somewhere around 90%.

Lyme is *everywhere* now....whether its reported or not....people have it in every state. Most people dont ever see a rash or any evidence indicating they'd been infected.

Obviously you're already aware that the lab which was used isnt very sensitive and if later on you choose to get more reliable testing Carla already posted that info.

None of the Dr.'s I'd seen (neurologist, rheumatologist, infectious disease specialist etc.) would even entertain the possibility that I could have Lyme. They wouldnt test me at all because it was such a "long shot".

Obviously they were all wrong.

I think its worth it to get a clear answer "just in case"....since Lyme is a progressive disease which can wreak more and more havoc the longer its left untreated.

Hopefully whatever you decide brings you better health. :)


Rachel

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I would be concerned about Lyme with these symptoms. Most cases of Fibro are actually Lyme...thats from studies that have been done. I cant remember the exact percentage but it was high...somewhere around 90%.

Could you direct me to those studies? I've seen nothing that supports that on PubMed, but may very well have missed it.

Can you post the bands that showed up on the Lyme test you did have? Most docs use CDC tracking criteria for diagnosis even though it was never meant to be used that way.

I can't find the results paper at the moment (it was from four months ago, not too long after these problems were really bothering me), but I'm 90% sure that they ran a Western Blot that came up negative.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I don't know about the study Rachel mentioned, I haven't seen it ... but here's an article that you may find of interest http://www.canlyme.com/fibrocfslyme.html

Here is one short comment from the article that makes a good point

Q: If the Lyme lab tests are inadequate and the symptoms are the same as CFS and FM, why not just treat all CFS and FM patients with the Lyme protocol?

A: You want to be conservative with your medicines. I think we have enough info now to tell CFS and FM patients to consider going on a 3-6 month trial of antibiotics and see if you're better. Consider all the other meds you are already taking that just treat symptoms and not the cause of your illness. They all have side-effects that can be hazardous. Is it worth it to you to consider a primary treatment aimed at a cause? There will be resistance from some MDs. They need to be educated. Your primary MD will need to consult an LD specialist re the treatment protocol.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I don't know about the study Rachel mentioned, I haven't seen it ... but here's an article that you may find of interest http://www.canlyme.com/fibrocfslyme.html

Here is one short comment from the article that makes a good point

honestly, I think my body would do *worse* on THREE MONTHS of antibiotics.

*SHUDDER*


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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I have fibro but mine was not lyme disease ..... I will not take any of the drugs the docs offer because I'm so sensitive to most of them. I decided to suffer & I mean suffer with the pain. I do take alot of vits& mins, it does help & if I can keep my stress level down I fair much better. And I pace myself when I have a ton of work to do.

Some days I don't move much at all. I call this my waste paper basket syndrome -I was dx'd in my late 20's

I hope you can find some relief

mamaw

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I can't find the results paper at the moment (it was from four months ago, not too long after these problems were really bothering me), but I'm 90% sure that they ran a Western Blot that came up negative.

Western Blots have "bands" ... often a doctor will just give you a positive or negative having interpreted the bands by the tracking criteria the CDC uses, which was not meant for diagnostic purposes. http://www.cdc.gov/epo/dphsi/casedef/lyme_...ase_current.htm

This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.

Also http://www.ilads.org/basic.html

1. Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

2. Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease..

3. Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

4. Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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HI Tiffany

It looks like you've tried allot of good things on your own.

Carla and Rachel have covered the Lyme issue well.

I know from our correspondence that you did not find much help in the LOD but i would encourage you (if you have not done so already..as i think you posted on Patti's thread early on)..to look at it again as there have been more postings.

from my experience..I found 10 years ago that 25 mg of ZOLOFT helped my fibro symptoms so much. Found this out from the gals i was swimming with.

then going on the LOD and the caltrate D Patti just wrote about in post 294 i think .....it's helping us all with fibro.

just another tip for something to look at.

I know many will think there is another 'underlying cause' but i'm like you with the abx...and yes there are many other ways to treat Lyme and the co infections that go with it ..........but for now this is working for me.

good luck

judy


Judy in Southern CA

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Hi there,

So sorry to hear of what you've been going through. I was diagnosed with fibromyalgia, along with osteoarthritis last December, & I can relate to your symptoms all too well. I didn't even know about gluten until the rheumatologist told me "I could give you morphine & it wouldn't take the pain away".

WHAT?? So I looked into food intolerances, & lo & behold I discovered that eliminating gluten helped the pain & other symptoms tremendously. (my signature goes into all the details of my diagnosis/lab tests/genetic testing etc). However, my joint pain & tender point pain did continue until I also eliminated soy. I suspected it was causing ongoing problems, so I ordered the Enterolab soy test, & the numbers were very high for the antibodies. Since going off soy, I've noticed a big improvement already in my pain levels. I still have some achiness, especially when I've had a hectic day, didn't get enough sleep, or am overly stressed. But I still feel much better than I did on soy.

So, just something to think about in your quest for information. I've heard from many people that soy can cause inflammation & joint pain, so maybe it's worth going off for a couple of weeks to see what happens.

Good luck! Keep us posted on what you find out.

Horsegirl


Diagnosed Fibromyalgia & osteoarthritis in multiple joints 12/06

Diagnosed gluten intolerant through dietary trials 8/07

Enterolab positive for gluten, casein, soy, egg

Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6)

Gluten free 8/10/07

Casein free 8/27/07

Soy & egg free 9/8/07

Eggs back again (whoo hoo!) 11/08

Diagnosed chronic fatigue syndrome 12/09

Starting various supplements/vitamins in hopes of feeling better!

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Tiffany,

I'll try to look for the study later...it was probably sometime last year that I read that so I'll have to do some digging around. Right now I'm off to work. :)

I *can* tell you for sure that it wasnt anything I found on PubMed. This was more of a discovery that Dr.'s are making.....taking groups of people diagnosed with Fibro and CFS...and then having them tested for Lyme. Basically, the results are always the same....most of the people with these "waste basket conditions" actually have Lyme.

The same thing is being done with Autism right now. Dr.'s who are testing these kids are reporting that up to 90% are positive for Lyme. Are these "official" studies that you'll find on PubMed...no....but in my mind it doesnt make the results any less significant.

From what I understand there is absolutely no way to differenciate between Lyme and Fibro....as far as clinical symptoms go. The only way to know for sure is to be properly tested and evaluated for Lyme. Its recommended that Lyme always be ruled out before going with a diagnosis of Fibromyalgia.

On a clinical basis, "chronic fatigue syndrome" or "fibromyalgia" cannot be readily distinguished from chronic Lyme Disease. Indeed, accumulating experience suggests that Lyme Disease may be a frequent cause of fibromyalgia or chronic fatigue (8,12).

Other microbes have been proposed as causative agents of multisymptom disorders that are being termed chronic fatigue and fibromyalgia, especially more recently recognized mycoplasma species such as M.fermentans and M.genitalium, but definitive proof of cause and effect has not yet been established (6, 23).

There has been an attempt to separate "late" Lyme Disease from "chronic" Lyme Disease, the former being manifested by objective signs of arthritis or neurological disease (32). Some have denied the existence of chronic disease, inferring that these patients suffer from psychiatric disorders; some have used the term "chronic" to mean post-treatment disease ("post-Lyme"), assuming that the infection has been treated, and the remaining symptoms are in the same realm as those patients who have "fibromyalgia" or "chronic fatigue" (27, 30).

These assertions are speculative and remain unproven. That chronic Lyme Disease actually exists, and is likely the most common form of the disease, is supported by epidemiologic studies demonstrating that 30-50-% of treated and untreated patients go on to develop a multisymptom disorder typical of, and indistinguishable from, fibromyalgia and chronic fatigue (1, 28). As with other multisymptom disorders, chronic Lyme Disease is a clinical syndrome consisting of fatigue, arthralgias and myalgias,and other nervous system dysfunction(7).

http://www.immunesupport.com/library/showarticle.cfm/ID/3579


Rachel

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I had fibro for years, it turned out to be celiac caused, of course for me. I have noticed other fibro type symptms after a allergic reaction to the antibiotic levaquin but those have now resolved with eliminating soy. If you know for sure that you are not reactive to soy, or are already avoiding it and they have to use meds one that they had me on was amitriplymine, it enabled me to sleep and didn't cause the nasty mental side effects of the other drugs they tried. It is an older drug and many doctors just want to go with the 'new' psychotropics that are pushed at them but I thought I would mention it as for me it seemed to give a lot a relief and a good nights sleep with just the smallest dosage.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Rachel, the quotes you have about lyme, cfs, and fibro being indistinguishable are interesting, because I came across a couple of websites with differential diagnosis criteria that specifically listed distinguishing characteristics. :D But, of course, it's an odds game, and there's a great deal of overlap. I think you know that I don't quite believe the theory yet, but I'm also not saying that I think it's wrong. :) (I have issues with the idea that only one lab in the world can test for something - that's the hallmark of a scam in many, many contexts. It's one of the same reasons that I'm waiting for Enterolab to get some peer reviewed studies out.)

As for soy... I'm fairly soy light. Soy lecithin in chocolate (yay! natural serotonin adjustment!) and milk subs, a little bit of soy sauce in stir fries, and that's usually about it. I don't generally eat tofu, I don't generally drink soy milk, and I don't notice a particular change in symptoms when I do. I tested soy when I did an elimination diet years ago shortly after I found I was likely gluten intolerant, and found no effect from soy, but that I was dairy intolerant. But all that was far before these symptoms appeared, which was around May or so.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Tiffany, like others I was diagnosed with fibromyalgia pre-Celiac-dx. Fortunately my symptoms cleared up enough when I went gluten free that I was able to go off of the medications that I had been prescribed. I still have minor symptoms, but they are certainly nothing compared to the pain I was in 4 years ago. Perhaps its time to try another elimination diet. You may find that another intolerance has popped up and its causing the fibro symptoms. Better that than jumping from medication to medication like the doctors would have you do. I would also tend to think that you should look into Lyme a little further though I won't say anything else about it. That's your personal decision whether or not you want to pursue it. I'm sorry I don't have anything else to offer. Please be careful if you go on any of the medications that the doctors will urge you to take. I was on Cymbalta for months and it REALLY messed with my head. After discontinuing the medication it took me months, literally, to feel "normal" again. Good luck!


~Angie~

Gluten free since May 2004

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I was recently diagnosed with Fibromyalgia, but I resisted being diagnosed for years because I didn't want Drs. to just blame everything on that and I knew it did not explain everything. Once I was diagnosed with the issue with gluten everything that was left really did fit the Fibro. profile so I went in and was finally officially diagnosed. This was after both my massage therapist and chiropractor kept asking if I'd been diagnosed since my muscles respond as if I had Fibro.

You really sound alot like me in that I did everything as natural as I could and the meds give me the boost I need to function better. I don't like taking medication, but it does make such a difference. One thing your Dr. may mention is Lyrica which was just approved for fibromyalgia. I talked with my Dr. who has been using it for some time and he was amazed at how much it helps. Unfortunately, one of the potential side effects is edema and as that's something I've had a problem with for years it's not an option for me at this time. For me I take Strattera which is one med that can be used for Fibro., but it also helps control my edema. For some reason if I have gluten my norepinephrine levels drop and I have to increase the med until the episode is over. It's frustrating, but you just have to experiment and find the med that works best for you.

One thing I would really encourage you to look at closely is the Vitamin D. You need the OH 25 test done and not the 1,25. I had the worst time getting the correct one ordered. I wanted it checked again because I was getting terrible joint pain and as soon as the test was drawn I started supplementing with D3 (not D2!) drops. Immediate improvement so I knew that whatever the level would come back as was too low for me. On a range of 20-100 mine came back as 40 which is not bad, but obviously not working for me! I looked back over all my tests for D and found that when I felt well my level was 78 so I know that's where I personally need to be. I have had a difficult time trying to work with the Drs. on this test and so I've been working with an NP in CO that has been great as she really "gets" this. I found that D appears to be what affects my sleep as well since I'm sleeping much better again after supplementing for a week.

The last thing that I have found to help I put a link to in my profile. It's on my website so I can't post it here. I'm really not sure why it helps and I took it because people that found I had Fibro. kept saying well you're taking that right and I wasn't. I gave it a shot and was very surprised to find that my muscles that are so tight in my legs began to relax a bit which is huge for me. I take two pills a day and have found that if I miss even one I don't feel nearly as well. I'm in a pattern where mornings are the worst for me painwise so as soon as I get up I take my meds and wait for them to take effect so I can shower etc. After taking this supplement for a while I found I would actually feel well enough that I didn't head straight for my meds just to begin to function. I tried lowering my meds, but I found I do still need the level I'm on this just helps me feel better overall. It's certainly not a miracle pill or anything it's just another tool that helps in the quest to be as well as I can, but I have found it helps more than anything I've found so far except my med and D. One other thing I did notice with it is I normally feel really bad when low pressure systems come in and since taking this that has improved greatly. It's raining today and I don't have the achiness and headache I always have which is great.

The product is natural intereron so I just realized I could look up fibro. and interferon and see if there's any research on it that might explain why it helps. Gotta love the power of the internet :o) I would never enjoy the level of health I'm at today if it weren't for the research I've been able to do!!!

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So sorry to hear you have yet more to deal with. :(

I don't know if you ever followed the "OMG" thread, but I did for quite a while (wish I satill had time to).

I think you should consider pursuing an assessment for Lyme disease from a "Lyme-literate" doctor. (You know how so many doctors are totally illiterate in celiac? Apparently, it's even WORSE for Lyme.) And mercury toxicity might be a factor as well (mercury exposure presumably from vaccines, flu shot, dental amalgams, tuna?).

From what I have read, you don't have to be in any area associated with Lyme--it can happen anywhere.

Most of the meds for fibro, as you know, mask symptoms rather than deal with the cause. Interferon sounds promising, though.

Best of luck--I'm thinking positive thoughts for you!

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(I have issues with the idea that only one lab in the world can test for something - that's the hallmark of a scam in many, many contexts. It's one of the same reasons that I'm waiting for Enterolab to get some peer reviewed studies out.)

I'm not sure where you got the impression there's only one lab in the world that can diagnose Lyme?? There are many labs....some are better than others.

Igenex is a speciality lab...other labs such as Quest do not specialize in tick-borne diseases and are not nearly as sensitive...meaning most positive Lyme cases are missed.

Another lab which is recommended for Lyme testing is Bowen....and yet another lab has better testing for co-infections...that would be Fry's Lab (Florida).

Igenex has a sensitivity of around 90%....the standard labs are far less sensitive....I think its something like 60-70%.

Thats not good if you're someone who really wants to rule something in or out. Obviously you'd want the best tests available for your $$...so thats why Igenex is always recommended.

I agree about Enterolab...I personally, do not place alot of value on those tests at this time. I'm not saying I think its bogus...I just think its mainly diagnostic for leaky gut....which can occur for many reasons other than Celiac.

Comparing Igenex and Enterolab is comparing apples and oranges. Two totally seperate things. Dr. Fine has not published anything for peer reveiw....there is no scientific evidence (at this time) that his stool tests are valid.

However, the Western Blots used in Lyme testing are a *proven* method of testing. Igenex happens to have more sensitive tests than other labs.....why would they be considered a "scam" because of having higher quality tests??

Because of the lack of sensitivity in other labs and because Igenex is diagnosing all of these cases that had previously fell through the cracks....the lab was targeted by some mainstream Dr.'s.

These Dr.'s were angry that this lab was diagnosing so many people with Lyme....people that they had FAILED to diagnose for many years. A negative article about Igenex came out in the New York Times and as a result the lab was fully investigated....and PASSED with flying colors.

The Scrutiny Ends For Igenex Labs

Rachel

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I only skimmed Rachel's post (lots of brain fog today) so I don't know if she mentioned it or not.

Several years back they were trying to develop a vaccine for Lyme Disease that never got released to the public (apparently people were getting Lyme from it). The vaccine used two of the most specific bands that show up on a Western Blot, so most labs leave these two bands out in anticipation of the vaccine being released, but it never was.

IGeneX leaves those bands in their testing.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Here's more info. about the testing. Yes, I am stressing the importance of using one of the better labs. :)

A Palo Alto laboratory, IGeneX, tests for additional Lyme antigens. After the government-recommended ELISA test missed chronic Lyme disease in bestselling author, Amy Tan, IGeneX detected Lyme antibodies. Tan had seen 10 doctors who had missed it, too.

Many other victims of chronic Lyme disease are finally accurately diagnosed after using the more sensitive tests.

In New York state proficiency tests, IGeneX has received a score of better than 95 percent, and, out of 58 labs tested, only IGeneX, had a perfect score for its Western "blot proficiency test.

http://www.sfgate.com/cgi-bin/article.cgi?...EDGK5IFLNN1.DTL

There are over 300 known strains of Bb and at least six genotypes, increasing the difficulty in testing people for its presence. This is compounded by the fact that the majority of public health and commercial labs such as Quest Diagnostics, LabCorp, Unilab, etc., use a hierarchy of tests established by the CDC and followed by the AMA.

The first of test to be done, the ELISA, is known to miss the organism in the samples tested. Only when this less-than-accurate ELISA is positive is a second test, the Western blot, ordered. Since these labs use the Centers for Disease Control & Prevention's epidemiological criteria, which even the CDC says is not to be used for diagnostic purposes, thousands of people each year who get negative ELISA and Western Blots are told by their doctors that they do not have Lyme, when in fact they do.

Over the past several years, as independent labs such as IgeneX and MDL have developed more sensitive tests for Borrelia and other tickborne diseases, an increasing number of people who were originally diagnosed with CFS and FM are turning up positive for Borrelia and, frequently, one or more of the other tickborne diseases.

Others who are seronegative for Bb (getting false negatives on tests) respond to appropriately aggressive antibiotic therapy, and may later show positive on the Western blot IgM (early or reactivated infection) and/or IgG (chronic or ongoing infection) tests, despite negative ELISAs and earlier Western blots.

Note on Symptoms: Many of these are symptoms common to other diseases. Getting a proper diagnosis for CFS, FM, and CMP is as much ruling out other diseases (including proper testing and assessment for Lyme and other tickborne diseases) as it is looking at the clues in dozens of tests and the actual physical exam.

http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Lyme Testing: The Problems Rarely Appreciated

1. Lyme can hide by a number of ways from your immune system.

2. If your immune system is not tuned up and working very well you can be found fully negative on multiple lab tests.

3. Most tests for Lyme are antibody tests. Antibodies, also known as immunoglobulins, are proteins that recognize something foreign in the body--like infecting bacteria and help remove it. The first and most common test your doctor usually orders is an ELISA antibody test. Again, since Lyme hides well and most immune systems are fair, you will come up normal or "negative."

4. Specifically, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).

In another study, it was in some ways worse. In this one the ELISA test missed over 70% of people with early Lyme disease, and 46% with late manifestations of Lyme where it was in the brain or causing severe body damage. (Laboratory Medicine 21:299-304, 1990). Meaning, it missed 70 out of 100 people with the early disease.

But it was still negative after the bug was in the body for a long time -- still missing 46 of 100 seriously infected people. Doctors have been sold by these labs on the reliability of these labs and they are hurting possibly as many as hundreds of thousands. After flu's, colds and a few other infections Lyme is at the top of the list. It is in 49 states and is not just a New England or New Jersey issue.

For some, the Lab is a place of perfect science. A place which has purely objective fact. In Lyme this is not valid. In one study, 55% of the labs could not accurately identify blood samples with Lyme, which led to the conclusion in a prestigious infection journal, that: screening tests for Lyme disease are not adequate (Journal of Clinical Microbiology 35:537-543, 1997).

What About the Western Blot? Is That Definitive?

The Western Blot is merely another antibody test. Our experience in measuring immune system markers is that the immune system is weakened in many with Lyme. So depending on immune system anti-Lyme antibodies is wishful. However, the Western Blot is more specific than the ELISA. The test can test for 25 possible "bands" that relate to parts of Lyme or other infections.

But the routine Western Blot typically done has massive errors. In one serious test of the Lyme Western Blot testers, there was a stunning finding. They used nine clearly infected patients and sent their blood to 18 labs. Of the IgG type of antibody, some labs were wrong. They missed 10 of 18 samples. For the IgM type of antibody, the labs were occasionally so bad they falsely reported Lyme as absent in 16 of 18 samples (Arch Intern Med 150:761-763, 1990).

http://www.personalconsult.com/articles/su...searticles.html

A Note On IGeneX

In late 2005, the New York Times knowingly published an inaccurate article about the accuracy of IGeneX's tests, including saying it had failed certification. In fact, IGeneX was in the midst of a routine recertification, something that all labs are required to do, and, as always, it passed, both in New York and California, the two most difficult states in which to get certified.

If your doctor or family tells you IGeneX is 'bad', print out the the CLIA 2005-2007 certification and tell them to go do the research that the New York Times refused to do--and ignored when the certification was sent to them.

http://www.anapsid.org/lyme/wb.html

I think its an important issue that most people who are diagnosed with Fibro or CFS are not even aware of. If they've been tested for Lyme and told they dont have it....thats what they believe. Because of the lack of knowledge in these Dr.'s...and the unreliability of the testing...people end up suffering alot longer than necessary.

This is also an infection that gets passed on (quite frequently) to children. As I posted previously....up to 90% of the autistic population tests positive for Lyme. Most of these kids were never bit by a tick.

Unless you are seeing a Lyme literate Dr. you arent likely to get properly tested or evaluated for Lyme. What Fiddle-Faddle said is true... if you think that Dr.'s are not informed enough about Celiac....its much much worse when it comes to Lyme.

As you can see Igenex is a very qualified lab...you would not be falling into a scam by getting tested properly. It cant hurt to make sure you have the best testing available....however, it *can* hurt to find out months or years later that you were misdiagnosed.

I hope this info. is helpful as far as why we would repeatedly suggest a lab like Igenex.


Rachel

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Tiffany.

good luck on your Dr apt on Thursday.

Has this thread been of any help to you?

I hope it has.

Please let us know what he says.

Hugs...........

Carla

My hubby got all 3 of the lyme vaccines as did our dr..........He's the one who gave them to him as both are birders and in the woods all the time. So it was released at one time.

Judy


Judy in Southern CA

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