posted
I'm a 39 year old who has been suffering with progressive symptoms for the past year. Prior to October 2007, I had suffered with what I describe as facial pressure. In october 2007, I started having more painful headaches that have since become daily. Since, I've started having pins and needles in the feet and hands. Serios arthritis pain in both knees and left elbow. I've developed a tremor in my right hand. Most recently I've started having serious muscle cramps and weakness in my upper legs as well as pin prick feelings all over my body. Literally feels like someone pokes me with a pin. This has occurred in every part of my body including my legs, abdomen, back, arms and face. A couple months ago, I stopped sleeping which my Dr thought was a side affect of a drug he had me on, but after stopping the med, the insomnia never improved. I now do not sleep without medication. During the last two weeks my facial pressure has turned into more of a burn than a pressure. My symptoms always get worse as the day goes along. Two weeks ago I had a nerve test that showed neuropathy in the arms. Last week I had blood work done which showed nothing on the IgM but had only band 41 on the IgG. I saw the Dr today who indicated that band 41 on the IgG was not enough to diagnose lyme, but seems to ignore all of the symptoms that I've had.
My question is, given the symptoms that I have and the fact that they seem to be getting progressively worse, is band 41 on the IgG enough for me to continue persuing lyme disease with another Dr. And if so, what type of specialist should I see.
Posts: 25 | From Myersville,Maryland | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Sure, I would definitely pursue an evaluation with a LLMD. I had this bad only through Quest on my IgG and have been too sick to work for a year. IGenix showed more IgM bands and Quest shows none. I'd like to see a third source run a test, but nonetheless don't stop if you know you're sick.
You know your body better than anyone. Your symptoms sure deserve an evaluation. I wish you luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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adamm
Unregistered
posted
Those symptoms alone are enough to warrant a trial run of Lyme txment; with the addition of any positive WB band, an extended course of therapy is strongly indicated.
Check out lymecryme.org and lymeinfo.net for a bit more insight into what may very well be going on with you.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
YES! Seek out a lyme literate MD. Go to the section of this website labeled "Seeking a doctor".
I only had 41 IgG ++ positive. But had many, many symptoms of lyme and other co-infections. If I hadn't come upon the symptoms of lyme and realized that's probably what I have going on, I probably wouldn't be here today. I was so ill and most days felt like I was going to die.
I am doing much better that I have been in lyme and co-infection treatment for 16 months of treatment now. I am not 100%, but I am doing so much better compared to the 20% - 30% I was before. I'd say I'm at around 70% - 80% altogether, although I still have bad days come and go.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Yes! See a LLMD, and get some treatment. Band 41 is usually the first band to appear. Dont be surprised if you get on abx, then get retested, and a bunch of other bands show up.
Posts: 514 | From . | Registered: Apr 2008
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posted
Thank you for your support. I did seek out a LLMD who I've seen who is convinced that I'm suffering from chronic LD
I'm not exactly sure how to feel.
Partly I am angry that I have wasted soo much time with neurologists, ENT's and my GP with no results and only progressive symptoms
I feel relief, or maybe hope, in that I believe that I've finally found a diagnosis that I can accept and believe in.
I am very frightened about what the future holds. I've heard and read soo much about the herx reaction and really cant imagine symptoms worse than they are now.
It frightens me to know that main stream medicine has virtually ignored this epidemic and the real possibility that my insurance isnt going to cover treatment.
Thanks again for the support.
Posts: 25 | From Myersville,Maryland | Registered: Oct 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Hi. Kpoindexter.
Welcome ! (But sorry you had cause to come here.) I am reposting your note so that you'll get more answers from the many people here who can't read large blocks of type.
Original post:
I'm a 39 year old who has been suffering with progressive symptoms for the past year. Prior to October 2007, I had suffered with what I describe as facial pressure. In october 2007, I started having more painful headaches that have since become daily.
Since, I've started having pins and needles in the feet and hands. Serios arthritis pain in both knees and left elbow. I've developed a tremor in my right hand.
Most recently I've started having serious muscle cramps and weakness in my upper legs as well as pin prick feelings all over my body. Literally feels like someone pokes me with a pin.
This has occurred in every part of my body including my legs, abdomen, back, arms and face. A couple months ago, I stopped sleeping which my Dr thought was a side affect of a drug he had me on, but after stopping the med, the insomnia never improved. I now do not sleep without medication.
During the last two weeks my facial pressure has turned into more of a burn than a pressure. My symptoms always get worse as the day goes along. Two weeks ago I had a nerve test that showed neuropathy in the arms.
Last week I had blood work done which showed nothing on the IgM but had only band 41 on the IgG. I saw the Dr today who indicated that band 41 on the IgG was not enough to diagnose lyme, but seems to ignore all of the symptoms that I've had.
My question is, given the symptoms that I have and the fact that they seem to be getting progressively worse, is band 41 on the IgG enough for me to continue persuing lyme disease with another Dr. And if so, what type of specialist should I see.
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[ 09. November 2008, 03:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I know this is a lot to take in, but I try to be somewhat complete so you have explanations and options. You can copy and paste for further reference.
While this is a very serious situation, rather than frighten with all this information, I hope it can be very empowering. Patients much educate themselves as much as possible. This is not taught in medical school and, as you will see, there is great discord about it in the medical arena.
Bottom line: You need to be evaluated by a LLMD for various tick-borne infections (or tick-borne disease: TBD). In addition, a good LLMD should be able to assess for other chronic stealth infections such as mycoplasma and HHV-6.
I truly hope you find the help you need. After you have an idea of what is going on, there are some choices you will have in treatment. First, proper evaluation by an ILADS educated LLMD.
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.
==========================
AFTER reading the Savely article 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
Note: Also see Dr. Burrascano's 2005 Guidelines at BettyG's thread.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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