I'm 36 and live in Western MD. Five months ago, I suddenly started having headaches and neck pain. After about a week, I became very fatigued and started having tachycardia and heart palpitatons. I had a cough, a light rash on my lower legs and feet, and chills at night. Over the first few weeks, I lost 13 pounds and had some strange tremors in my neck from time to time.
An ER doctor put me on a 15 day run of Doxycycline (100 mg x 2). Things settled down after a little more than a month.
However, I continued having tremors in my upper back and neck at night during sleep hours. My night time body temperature was around 97 degrees. My liver enzymes were elevated.
The left thoracic area of my back went on to hurt for a few weeks. The inside corners of my eyes are red. I started having what felt like muscular pains around my mid-section.
Over the last few weeks, I've developed a constant movement that feels like my spine and my brain are in a constant tremor. It is very strange and very bothersome.
A borderline test in mid-June was equivocal for Lyme. The Western Blot then showed several positive bands, but not enough for the doctor to declare this Lyme disease.
I am still fatigued from time to time and headaches and neck aches continue to come on.
Could this be Lyme or could I have experienced a virus that is still not finished with my body? I did not remove a tick, but they are plentiful in my area and I spend time outside.
I appreciate your thoughts!
William
Posts: 131 | From MD | Registered: Jul 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Mayberry,
YES! Definitely sounds like you have lyme as you seem to have all the classic symptoms.
Doxy is the abx given to lyme patients, however it is usually 400 mg. for a minimum of a month to start.
It sounds like you have been under treated and you are relapsing.
Please read this link as it is a guide from the top lyme doc in the USA. I would print it for future reference.
Most regular MD's and Infectious disease doctors are not up on the real treatment of lyme.
On the first page of this site, click SEEKING A DOCTOR, you can find a good Lyme Literate doctor in your area, or post a request for LLMD docs that people can give a good reference. THere is also a symptom's list on page 9 & 10.
The most important thing to remember is that lyme is treated on symptoms and not TEST results.
As soon as you can get an appt. with a lyme doctor they will run the necessary tests, including those for co-infections. Buggers that travel with the tick in addition to lyme.
Please keep us posted on your progress. Good Luck!
DONT WAIT TO MAKE THAT APPPOINTMENT.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Hi William, this sounds like the way it all began with me, including the weight loss, etc. It progressed very quickly to a lot of cognitive issues along with dropping things, stuttering, loss of memory and location, word-finding and even - a favorite! - drooling.
One night I had the shakes so badly that I would really call it near-convulsions. We were supposed to be meeting friends for dinner but I was shaking so badly I made my husband drive around and around the restaurant for twenty minutes with the butt warmer on to try to stop the shakes/chills.
You sound Lymie to me. I'm also equivocal on the WB, but after treatment, became more and more positive. Believe that is not uncommon.
The main thing is to jump right on this by getting an actual Lyme doc, because trust me, it can get so much worse.
best -
otm
Posts: 314 | From east coast | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You said: " . . .A borderline test in mid-June was equivocal for Lyme. The Western Blot then showed several positive bands, but not enough for the doctor to declare this Lyme disease. . . ."
--
Oh, so sorry to hear of you having trouble.
Bottom line, you need to see a REAL doctor. Your Western Blot could very well have been positive but the CDC politics are the problem
I will post links below that I hope will be of help.
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.
The Complexities of Lyme Disease (A Microbiology Tutorial) by, Thomas M. Grier, MS
Excerpt:
" . . . To get the same amount of lethal exposure during new cell wall formation of a Lyme spirochete, the antibiotic would have to be present 24 hours a day for 1 year and six months! . . . ."
=============================
AFTER reading the articles 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
posted
Lyme--no question. You can't base a Lyme diagnosis on blood tests, as the ones available to the public are pretty much all absolutely awful.
Read up on the true of what you're dealing with @ lymeinfo.net and lymecryme.org. then get to a competent.
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
You need to see an LLMD (Lyme Literate Medical Doctor) so you can get a proper diagnosis.
Go to seeking a doctor section and post for a physician in your area. Hope this helps make things a little clearer.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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