posted
yes, and if I am not mistaken - many here will tell you the same
one of the reasons the neuro years and years ago felt that I had MS
some of the lesions improved with abx
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Are you seeing an LLMD? It sounds as if you are own your own with this in that a LLMD would have told you right away that this is very common for lyme patients.
After treatment, the white matter has been known to lessen or disappear for many lyme patients who have had similar MRI results.
You should have not just the report, but the actual computer disc/visual part of the MRI forwarded to your LLMD. The LLMDs are skilled at reading MRIs, more so than some radiologists and neurologists who are unfamiliar with lyme.
A LLMD can better guide you in determining what your specific findings in the MRI indicate and help you figure out how to begin.
While white matter is frequently visible on MRIs of lyme patients, you would still need to be assessed for co-infections before a treatment protocol can be designed for you.
Whatever you do, please do not let the doctors talk you into a lumbar puncture (spinal tap). The may want to further determine if MS is involved.
Many lyme patients have been dx with MS but, then when lyme is treated, they get much better. So, in many cases, MS is misdiagnosed.
A lumbar puncture is not a good determining test for lyme at all. It is expensive (even if insurance covers it, needless money spent many times) and it really can not even prove MS. And this test can cause severe headaches for up to a couple weeks afterward even if the specific instructions are followed.
And . . . if a doctor thinks you have MS, steroids are frequently the Rx. Steroids can make lyme blossom. Unless required sort-term to save a life, Just say "no" until you can be properly evaluated by a LLMD.
Also, if you need further tests for lyme and tick-borne infections, be sure to have a LLMD determine the lab (Igenex is best for some; Fry for others). Most doctors do not do the correct tests and they also don't know how to read them. Besides, lyme is a clinical diagnosis.
The MRI is a good tool, though, and that will help you get treatment, I hope.
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This is just one of many articles that addresses the frequency of misdiagnosis of MS when lyme is really the cause. It also discusses the difference between lyme-caused MS-like symptoms and MS of other etiology:
posted
Thanks! And yes I am on my own...trying to find a descent primary doctor, can't find an LLMD in my area. They actaully told me over the phone that my MRI was normal and my blood tests were negative for Lyme, however, I asked for copies and the MRi said I had hyperintensity white matter in the posterior frontal and subcortical lesions. And my Lyme test said I was in the equivocal range. Not sure what the test was.
You seem pretty knowledgeable, do you happen to know anything about eosinoplilic esophagitis? Might have spelled that wrong..... but if you do I am curious to know if Lyme can cause this.
Thanks a lot
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Katc - oh, I wish you had a doctor. I think you are correct to pursue this.
You very well could have lyme. Equivocal tests often are really positive and the MRI seems to point to that, too.
I would not even bother trying to find a primary doctor at this point until you can find a support group. You may find a GP who is lyme friendly through a support group in your area.
Remember that most doctors go with the IDSA approach so that, even if you had a blaring positive test, you would not get proper treatment. Medical schools do not teach about lyme. Therefore, to most doctors, it's no big deal.
Can you travel to see a LLMD? You need to be re-evaluated for lyme and evaluated for co-infections, too.
Can you get a few DVDs or books?
In the meantime, while you settle on an approach, I might suggest either the Zhang or the Buhner protocols from books below. You do have to do something, soon.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
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AFTER reading the Savely and Goldings' articles (links above) this will make more sense and, sadly, shows the state of treatment:
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Also of interest are the earlier versions of ILADS guidelines by Burrascano. Sorry, I don't have the link here, but you will see his name frequently as one of the pioneers for good patient care.
This book, by an ILADS member LLMD, holds great information about pharmaceutical and complementary treatments and great advice on self-care requirements:
posted
yep--go to lymeinfo.net to read up on the Bb-MS connection.
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WildCondor
Unregistered
posted
I had white matter lesions on my brain on MRI. of course the neurologists said i had MS, and my life was ruined. Of course they lie, and were full of bs, and the white matter lesions were Lyme, and went away with treatment.
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