Lyme disease is caused by a spiral shaped bacteria (spirochete) called Borrelia burgdorferi. These bacteria are most often transmitted by tics and mosquitoes. The spirochetes have been called "the great imitators" because they can mimic virtually any disease, which often leads to misdiagnosis. Patients suffering with a chronic illness and especially those with Fibromyalgia, Chronic Fatigue and Immune Dysfunction Syndrome and Unrelenting Fatigue should consider Lyme disease as a contributor.
Patients with chronic Lyme disease most commonly have fatigue, joint and muscle pain, sleep disorders and cognitive problems, also known as 'brain fog'. In addition, infection with Borrelia often results in a low grade encephalopathy (infection of the brain) that can cause depression, bipolar disorder, panic attacks, numbness, tingling, burning, weakness, or twitching. It can also be associated with neurological disorders such as multiple sclerosis, dementia, such as Alzheimer's disease, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The infection often results in hormonal deficiencies, abnormal activation of coagulation and immune dysfunction, which can contribute to the cause of the symptoms.
Patients with chronic Lyme disease often complain of 'strange' or 'weird' symptoms that cannot be explained even after going to numerous doctors and often results in the patient being told that it is psychological. Patients are often told that they are hypochondriacs and are referred to psychiatrists and counselors for treatment.
Because the symptoms are so variable, most patients are usually not considered for testing or treatment. If testing is done, however, standard tests will miss over 90% of cases of chronic Lyme disease. The standard tests include an immunoassay test of IgG and IgM antibodies and a Western blot for confirmation. The problem with these tests is that they are designed to detect acute Lyme disease and are very poor at detecting chronic Lyme disease. In addition, doctors (infectious disease, internists, family practice, etc.) most often use the Center for Disease Control (CDC) criteria to define a positive test. This criterion was never meant to be used for diagnosis, but rather for epidemiological surveillance (tracking data).
If one uses an expanded Western blot with revised requirement criteria for diagnosis, studies have demonstrated an improved sensitivity of detection of over 90% while having a low false-positive rate of less than 3%.
There are also a number of co-infections that are commonly transmitted along with the Lyme bacterium, which include Bartonella, Babesia, Ehrlichia and others. There are different species in different parts of the country that can make testing difficult and insensitive. As with Borrelia, there is a very high percentage of false-negative results (test negative despite infection being present).
Treatment of chronic Lyme disease can be very problematic as the Borrelia bacteria can transform from the standard cell wall form to a non-cell wall form (l-form) and also into a treatment resistant cyst. Standard antibiotic treatments are only effective against the cell wall form and are ineffective against the L-forms and cystic forms that are usually present in chronic Lyme disease. Consequently, the usual 2-4 weeks of intravenous or oral antibiotics are rarely of any benefit. The use of longer courses of oral or intravenous antibiotics for months or even years is often ineffective as well if used as the sole major therapy. A multi-system integrative approach can, however, dramatically increase the likelihood of successful treatment. This includes using a combination of synergistic antibiotics that are effective against the l-forms and cystic forms, immune modulators, directed anti-Lyme nutraceuticals, anticoagulants, hormonal therapies and prescription lysosomotropics (medications that increase the effectiveness and penetration of antibiotics into the various forms of the Borrelia spirochete).
To adequately detect and treat chronic Lyme disease, Physicians must understand that standard tests will miss the majority of these cases and standard treatment will fail the majority of the time. One must undergo more specialized testing and a multi-system integrative treatment approach to achieve success in the majority of patients.
Posts: 1251 | From california | Registered: Apr 2005
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posted
Thanks for posting this information, Jelly Belly!! I know 3 people who have been dxed with Fibro, that just can't believe that they could have Chronic LD. I had quit trying to get them to look into this possiblity, after running into block walls with them. With this information, I'm going to try one more time to get them to at least look at the possibility.
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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But here's what fibro patients go through: first, the search for a diagnosis, during which we are usually told it's psychosomatic.
Then we get told by doctors: you have fibromyalgia and it's of unknown cause. All we can do is try to find some symptomatic relief.
As a result, people with fibromyalgia end up believing in a label, a syndrome, because now at least there's a NAME for what we're going through.
But a label for a syndrome is not an explanation for what is going on.
Some fibro patients have told me they were tested for Lyme and came out negative and so therefore couldn't have Lyme, like the testing is supposed to be just straightforward.
They don't realize all the pitfalls re testing -- that the test can be a weak test(ELISA), that the two western blots are better tests to order, if the Western blots weren't sent to a good lab like IgeneX, CDC surveillance standards can call a positive result negative, the person has a different strain than the ones tested for, they aren't making enough antibodies to show up in the tests, the bacteria are in cell-wall-deficient or cyst form and so not recognized, etc.
That this is a clinical condition and needs to be met with various treatment trials.
And then fibromyalgia patients have expressed concerns about taking antibiotics -- that it looks like an awful lot of abx, or that they seem to not be working for many. They don't understand that it's a matter of trying different treatments to see what's going to help the symptoms.
Fibromyalgia patients also have not comprehended just how many symptoms can be caused by one entity, or more, if they have coinfections.
They have not comprehended the multiple forms of possible transmission: ticks, other insects, human(body fluids, transplacental, breastfeeding, blood).
They have not comprehended the invisible nature of acquiring the disease -- that most people never see the tick(s) that bit them, or the insect bite(s), or the human transmission, etc.
They have not comprehended the varieties of ways the disease presents -- quickly, slowly, varying symptoms, etc.
All I can say is that as an ex-labeled fibromite, this is not an easy road.
That we have to understand that our doctors have not been discussing Lyme with us.
That we need to be prepared to do some reading, some checking, some googling, some research on lyme and coinfections -- that they are all over the world, how they're transmitted, what kind of organisms we're dealing with here and how they operate in the body, their huge number of symptoms, the uncertainty of testing, the multiple treatment experiments.
And an understanding that there is a medical debate going on. And that we have to go to particular doctors who are trained to recognize, test and treat the symptoms of Lyme and coinfections.
We have to be prepared for all that or else we don't find out we may actually be Lyme patients instead.
[ 04. November 2007, 02:06 PM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
Jellybelly-thanks for posting this great article!
I was diagnosed with sarcoidosis, fibromyalgia and chronic fatigue syndrome. I have since had a positive Igenex Lyme test.
The treatment is complicated but at least I know what direction to pursue.
Thanks again! I just sent it to my mother and to my sister-in-law who is a physician's assistant with many fibro patients. Hopefully she can help some get tested for Lyme.
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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Michelle M
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posted
Great post, Robin.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
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posted
YES, in my understanding the main doctor who runs these has just recently become better acquainted with many Lyme docs and much Lyme literature. He is a good doctor and a good man who honestly had not made the connections he has recently made. I think he will alter his protocols accordingly... Good to know!!
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Jellybelly
Frequent Contributor (1K+ posts)
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posted
People are slowly being educated and a lot of it happens out of our mouths.
My mom just called last night all exceited. First thing she said was "one down, four to go". I was first diagnosed with Lyme after having been FM for many years. After my diagnosis, my mom and daughter were both found to be CDC positive, both having been diagnosed with FM. My mom has made major progress on being treated.
I had to take her to my LLMD in NM as her doc who she really liked, he did the test (Igenex), and her first came back negative, unfortunatly that was the end of it for him, and said you don't have Lyme. When my LLMD tested her again after he had started her on ABX, the second time she came back positive......her doc didn't seem to be particularly interested.
Since then, my mom has been talking to everyone she knows who has been given a diagnosis of FM/CFS or Lupus, etc. She encourages them to look into it as the cause.
Well.....someone we have known for many years and has esxhibited FM symptoms for as many years, if not longer, finally decided to pursue that possibility. She sees the same doctor as my mom, and asked him to run a Lyme test. He agreed to do so. As far as I know it was not even Igenex this time.
Fortunatly she had been on some abx for another issue, and she came back positive for Lyme. She has now gone from a FM diagnosis to a Lyme diagnosis!!! If she is here, she knows who I am talking about.
Funny thing is, the doctor told her to speak with my mom about what the treatment should be. So my mom who is seeing him on Monday, is going with plenty of info on how to treat Lyme. Who knows he may someday be the first LLMD in the state of Hawaii!!!
Posts: 1251 | From california | Registered: Apr 2005
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I actually called one of these centers a couple of weeks ago. Not sure which labs they use for Lyme testing -- they did mention that most tests were from Quest or Labcorp.
There have been a few people on this website who were initially diagnosed by the Fibro and Fatique Centers, but I think most of them ended up going to an LLMD for treatment.
I think maybe each location can pick the lab they use for testing so there may be differences between the different locations.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Bea: I'm one of those people.
I was blessed to get a positive on Band 41 on a Quest Test while at the Fibro and Fatigue Center so they did the Igenex. She told me it was negative but fortunately I got a copy of the test and I was IGg and IGm Igenex positive.
I started my treatment there (after convincing the Dr. that I actually had Lyme) but had to leave (long, long sad story). I am now with a very good Lyme Dr. that is not too expensive and he takes very good care of us.
Some of the centers are OK - the one I went to is very bad - (and I know a lot of "victims" of that center.) All of them are VERY expensive.
But, had I not gone there I'm not sure if I'd have my diagnosis, so I don't regret going there.
My twin spent $12,000 there out of pocket and they wouldn't test her with Ignenex because she had a negative Quest! She is now with my Dr. being treated for Lyme after a postive Igenex.
Posts: 1761 | From USA | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
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posted
-
Wow! Thanks for that good news. - Yeah, I was dx with Fibro about 20 years ago, CFS 18 years ago. Then the lyme, babesia and ehrlichia trio 10 years ago. It had been lyme all along.
If they (F & F )are really testing and recently came to know the lyme specialists and their work, great. Finally. That takes a lot of studying by doctors so, really, I applaud any doctor who takes the time to do that (and don't understand any who don't).
However, be aware that depending upon the state in which you live or see the F&F doctor, they may not be able to treat you if that state's medical board does not believe in lyme.
I live in one of those states. I know there have been doctors who have lost their medical licenses for treating advanced lyme here. I would hope that the F&F doctors don't run and hide, of course. But be aware that this is a very political matter.
Reading their stuff above, it sounds like they get it and realize that treatment for advanced cases is a journey. It is reassuring to read that.
If you live in a state where doctors are unaware of lyme and you have good luck with any doctor, I urge you to be low key about it. Don't shout it out at a restaurant, etc. or call all the doctors who couldn't treat you and announce it.
We want these doctors to stay the course. F&F could actually change the way patients are treated - in many ways. And that could be huge.
Caveat: some states have another entire set of bands they consider positive for lyme Western Blot testing. Go to your state's health department site (not the medical board). Search around. Also remember that the test is not designed to be the final word. Clinical symptoms are. The CDC even states that.
I was positive with my state's criteria, but equivocal with CDC for lyme. But positive for Babesia and Ehrlichia, yet the doctors still denied lyme could be possible because of the CDC stamp on it. Equivocal means "maybe" and I had many postives bands which many lyme experts would consider positive in itself.
Most doctors don't know about the differences in the state criteria (still just a guide). Even though my state's health department has quite a bit about lyme published, my state's medical board denies it for the most part. If someone does not meet the CDC criteria, the positive bands might match up with that state's criteria ( or a state they used to live in or where the tick bick happened).
sorry this is so long and overly worded. I can't seem to be concise and clear right now.
Oh . . . also there may be certain ways to help the test be more accurate. for instance, if you are on a certain abx - or not. It may make a huge difference. I don't know all that, but be sure to find out how to get the most accurate test possible. Ask around. You might check out Igenex web site, too.
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[ 04. November 2007, 09:04 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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canbravelyme
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123- That was really sad!!!
Glad you're here!!!!!!!!!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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