Hey all just wanted to tell you about my story to see if anything sounds familiar.
Back in early October i notice a red bump maybe the size of a dime on my lower right abdomen. right along the belt line. The next day or two i felt awful. Chills/sweats/ worst headache/stiff neck. The bump now turned into a rash about an inch or two thick and maybe 6 inches in length
I went to the ER and the doc told me it was "cellulitis" and gave me some IV meds for the next 2 days. Followed up with a prescription for Amoxicillin for 10 days. After this i felt better for awhile.
One day in January i was sitting on the couch and it felt like my hear was going to jump out of my chest. screaming palpitations. I went to my doctos office the next day with palps and feeling lightheaded/dizzy and chest pains. my PCP sent me to a cardio who diagnosed me with Sinus Tachycardia.
He gave me atenolol but the medicine really screwed me up. insomnia, very lethargic, etc. I stopped taking it.
Ever since then it feels like I'm nervous system has been off. occasional pain/numbness in my fingertips & toes, face has felt numb also at certain times. Jaw pain, chest pain, dizzy, awful headaches to the point where it felt like there was a bag of sand on my head and what i can best describe as brain fog.
I went back to my PCP for about the 4th time in the last month and we decided to test for Lyme. He ran another test and that also came back positive for the antibody.
In getting more detail from him i came back positive for IgM. I'm still waiting for a detailed report of the bloodwork to be faxed back to me.
He wrote me a prescription fo 100mg Doxy twice/day. Not sure if I should stick with him and see how this treatment goes or try to find an LLMD for more testing?
I will post the results of my bloodwork when i get them
Posted by DaveNJ (Member # 17362) on :
Kevin,
You need to find a Lyme Literate Doctor. 100mg of Doxy x2 a day will not kill Lyme. Your cotor is followed outdated inforation.I'm sure others will chime in here and tell you the same. Don't screw around with is. Get to LLMD by going into the seeking Doctor thread.
Dave
Posted by jt345 (Member # 19638) on :
I've heard that before. Find a doc who will listen too You. Only You know Your body,listen to it. Iam sure Boston has a group ,or maybe someone here can help setting You in the right direction. One thing I have found is not too take no for an answer.be as wellas You can be jt345(appleseed)
Posted by Kevin V-910 (Member # 19624) on :
! Lyme IgM WB Poisitive (R) IgM band (s) (kilodation): P23, P41 --Expected Values-- Negative
Posted by just don (Member # 1129) on :
tests mean nothing,,,you probably still have lyme. Go see a real deal LLMD,,,they dx based on symptoms not tests!!!
Posted by Keebler (Member # 12673) on :
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.
Please find an LLMD as soon as possible!! You need to GET WELL and that won't happen with your current dr. He doesn't know how to treat it as evidenced by your dosage...way too low.
Hats off to him for at least testing you with a Western Blot!