posted
I do not recall a tick bite or rash but symptoms first presented themselves two months after the summer of 2004, which I spent on Martha's Vineyard, MA.
My initial symptom was sudden left sided heaviness/numbness that would come and go irregularly. Sometimes I would experience it for days at a time - or not at all for weeks.
I was told by a couple physicians that I was having migraines, possibly due to stress.
The left-sided heaviness/numbness was my only obvious symptom until May of 2006, at which point I started having muscle twitches, fatigue, migratory muscle cramps, aches/pains, lack of concentration, eye floaters and various and unusual symptoms.
The symptoms have become more frequent and intense and I can't discern any triggers. My lifestyle is a relatively healthy one.
My neurologist and GP have both tested me for Lyme (using ELISA) and both tests came back negative. Spinal tap results were negative for both Lyme and MS.
EEG, Evoked Response, MRI of Spine were negative.
And MRI of my brain showed one medium sized white matter abnormality/lesion on the right side of my brain (possibly explaining left-sided symptoms?)
The only other postive test result was for another tick-borne disease (ehrlichiosis)...but which came back negative the second time around.
Anyhow, I have been given no definite diagnosis and I'm not sure what to do next.
Is it possible to have three negative test results for Lyme?
Is it possible for the initial symptom of Lyme to be left-sided heaviness/numbess?
Please excuse the long post - I had to get this off my chest. Thanks. -Guy
Posts: 6 | From Western Massachusetts | Registered: Dec 2006
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posted
Martha's Vineyard has one of the highest rates of Lyme in the country. That's a red flag right there. The ELISA test is largely worthless. Most general docs don't understand enough about Lyme to give you a decent perspective. You need to be evaluated by a Lyme-literate MD. Go over to the "find a doctor" forum on this website, and ask for info about an LLMD in your area. Good luck.
Posts: 991 | From California | Registered: Feb 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
You definitely need a lyme literate dr. If it is lyme they are the best ones capable of diagnosing and treating it..
if you have other health issues they are drs and they can address that too.
Lyme tests and coinfections (like erlichia) tests are notorious for being innaccurate... there are alot of false negatives.
Lyme should be a clinical diagnosis.
Post in seeking a dr... state what area you are in and where you can travel to.
Please make sure your private message is enabled because we due not post drs names on the board due to political issues.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
See below:
I do not recall a tick bite or rash but symptoms first presented themselves two months after the summer of 2004, which I spent on Martha's Vineyard, MA.
-------------------------- Many people do not recall a tick bite nor rash so what you say does happen with lyme patients.
My initial symptom was sudden left sided heaviness/numbness that would come and go irregularly. Sometimes I would experience it for days at a time - or not at all for weeks. ----------------------------------------------- Lyme can do this. My first neurological related symtoms where this. It took 2 years (and $40,000) to figure out what was causing it.
I was told by a couple physicians that I was having migraines, possibly due to stress. ------------------------------------------------- This is a common suggestion given as a last resort. In otherwords they should have more accurately said "we are not sure what the problem is, PERHAPS it is stress". It sounds like they looked at a lot of things but I will bet that they did not look very closely at some of the insect bourne infectious diseases. They will usually discount this as a possibility as they are used to treating acute infections. Lyme and other tick bourne diseases can be either accute (ie. RMSF,tuleremia) or subaccute (ie.lyme,babesia, bartonella). The problem with the sub accute ones is that they are hard to test for with any reliability due to the genetic variability. THE TEST ARE NOT VERY GOOD AND YOU NEED TO SEE A GOOD CLINICIAN THAT HAS SEEN TICK BOURNE DISEASES TO DETERMINE IF YOU HAVE BEEN EXPOSED. Given your history I would strongly suggest you find one of these fellows.
The left-sided heaviness/numbness was my only obvious symptom until May of 2006, at which point I started having muscle twitches, fatigue, migratory muscle cramps, aches/pains, lack of concentration, eye floaters and various and unusual symptoms.
------------------------------------------- All common Lyme symptoms. I also had the same as have many many others.
The symptoms have become more frequent and intense and I can't discern any triggers. My lifestyle is a relatively healthy one. --------------------------------------------- You might notice a regular cycle of symptoms intensification. If this occur on a very regular cycle then I would say you have lyme for sure. The question then becomes what else?
My neurologist and GP have both tested me for Lyme (using ELISA) and both tests came back negative. Spinal tap results were negative for both Lyme and MS. ------------------------------------------------- The Elisa tests are well known for not providing accurate results in later stage disease. There are a number of reasons for this. As a result a negative result is suspect and should not discount the possibility of Lyme, similarly a positive alone is not sufficient to declare that you have it(you need symptoms also). The best thing to do is spend the money and go to a tick bourne disease expert that knows the ins and outs of Lyme and other tick infections. There is a lot of clinical experience being ammassed but the Dr's who do not deal with it all the time never see this info as the publications lag behind several years. The text books lag behind at least 10 years. Thats a long time to wait while you are getting worse.
EEG, Evoked Response, MRI of Spine were negative. ------------------------------------------------ Common finding. They should not have dropped Lyme from the differential. They still should check for other things first but Lyme should have still been on the list.
And MRI of my brain showed one medium sized white matter abnormality/lesion on the right side of my brain (possibly explaining left-sided symptoms?) --------------------------------------------- Possibly lyme related, possibly not. Lyme more often causes vaculitis and this results in the hypoxic (brain fog) feeling. A lession would mre likely cause fixed problems not variable ones. You may have a common finding of Unknonw bright object... a common finding of unknown significance. You might wan tto try t get a perfussion spect done to see if your brian blood flow is screwed up. The flow problem is not the more common problem of blocked arteries but rather the micro vascilature becomes inflammed and cuts down the blood flow to parts of the brian, often on one side only.
The only other postive test result was for another tick-borne disease (ehrlichiosis)...but which came back negative the second time around. -------------------------------------------------- If your have ehri. Then you did get bit by a tick. Odd that you where not treated for this as I think most Dr's will treat immediately as this can be rapidly fatal. If the tick had multiple diseases, there is a concert of sorts going on in your body where the infections are trying to come to a mutual understanding on which one will dominate. This can cause all sorts of odd syntoms, especially if it has invaded the brain. Sadly, most tick diseases can quickly infect the brain and cause problems that are hard to track down Unfortunaltely most Dr's do not have experience with such infections and the patient can bounce from Dr to Dr for years before the cause is found.
Anyhow, I have been given no definite diagnosis and I'm not sure what to do next. --------------------------------------------- GO TO SEE A TICK BOURNE DISEASE DR. THE ACRNYM USED HERE IS LLMD. YOU CAN POST A QUERY ON THE THE FIDNING A DR FORUM.
Is it possible to have three negative test results for Lyme? ----------------------------------------- Yes,for Elisa with out a doubt.
Is it possible for the initial symptom of Lyme to be left-sided heaviness/numbess? ------------------------------------------- Yes
Please excuse the long post - I had to get this off my chest. Thanks. -Guy ---------------------------------------- Good Luck
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I agree with everything the others said. I just wanted to add that numbness on my left side was my first really bad symptom. I only wish back then I knew it was lyme. I was told it was mono, and then later stress, which is ridiculous.
I have since gotten all those other symptoms you listed as well.
You need to see an LLMD and get a proper diagnosis.
Posts: 71 | From New York, NY | Registered: Aug 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
David gave some great explanations of what can be happening.
Here are some articles and books that can also help shine a light. This is not a new story. With the right diagnostician and proper treatment, you will have a chance.
The first article explains WHY you need a particular kind of doctor. The second one explains how other doctors can miss the mark if they follow IDSA.
It's a lot to take in - a political battle, sadly. However, if you understand what is going on, you will know where to find the doctors who have done so much research and treated thousands of patients (ILADS).
While there are several books here, nothing an replace an excellent doctor. I hope you can get into see one soon.
In the meantime, be sure to take really good care of yourself.
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, 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.
==========================
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
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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