The past four years I have had these constant main symptoms
non stop twitching , muscle aches, fatiqued, horrible sleep habits,
needlesticks, jerks, cognitive thinking problems.
I've seen every possible doctor and test.
neurologist says bfs.
was dianoised rls
lyme west blot band 23, 28
have not had the money to see llmd yet
question is can you have these symptoms only for years and has
anyone been told by a llmd that these symptoms are part of lyme?
I have the Igenex kit but my famiy doc says its a waste of money.
I've dealt with these symptoms for years and have gone to work and dealt with it.
It's been quite frustrating to say the least. everybody thinks i'm nuts and roles there eyes.
Any thoughts
Posts: 64 | From New Jersey | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: neurologist says bfs. was dianoised rls
What is bfs; ris ?
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Yes, the symptoms you describe can be lyme -or any other tick-borne disease or other chronic stealth infections such as Chlamydia Pneumonia (Cpn), etc.
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Drop your PCP. Any doctor who will not investigate the symptoms you describe should not get paid.
Drop anyone who just rolls their eyes at you, too.
So, find a doctor who will believe what you report. Find a doctor you can be honest with about this and one who will work toward a resolution.
See if your local support group has names of anyone who might take your insurance.
If not, see if a LL (lyme literate) ND (naturopathic physician) might see you and run the tests. Their fees may be less than a LLMD.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
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:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .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, containing MUCH more detailed information.
-===
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.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
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:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
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.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
She is an ILADS member and a ND (naturopathic physician), so she has knowledge of the unique nature of the spirochete and what is required but also knows all about supportive techniques.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories of those who ...
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As you sort through all this, be sure to take the very best care of yourself as you can. I hope you find the tools you need to regain your health.
And, now, because you probably could use a good laugh:
rls restless leg syndrome
Posts: 64 | From New Jersey | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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Oh, in the meantime, magnesium will help with those. See Singleton's book for details.
Magnesium is a huge help with many of the lyme symptoms, but it is not directly a treatment for lyme. You need to be properly assessed by a member of ILADS, or at least someone very much ILADS-educated, whether a LLMD or a LLND.
I hope you can find a way to make this work.
You said: "lyme west blot band 23, 28"
I assume those were positives. Some LLMDs, if the clinical symptoms are full force, will say that even one positive band can indicate lyme. Some LLMDs who have lots of experience, realize that lyme can be present, even with no positive bands.
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The
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