i know i ask a ridiculous amount of questions on this forum but i think the reason is that b/c since getting my positive Igenex result back in August I've had way too much time to think about everything since my LLMD appointment isn't till Oct 3rd (which now isn't far at all)
But obviously I've started over thinking everything and yesterday's appointment with an internist here in my home town of Windsor ON vs. Toronto for my LLMD appointment said that she did some research and says that she thinks my Igenex test is a false positive
She went in to explain it b/c she talked about how the CDC criteria blah blah blah so i was actually negative by CDC and also that she read somewhere that if the IgM is really positive after so long that it's most likely a false positive (b/c IgM means recent infection) ...
I mentioned to her that i've read and heard from you guys on here that the long term IgM positive could mean recurrent infection and she didn't agree but gave me 21 days of Cefuroxime at 500mg twice a day and sent me on my way
Any thoughts??
My second concern goes out to everyone b/c I'm concerned about my LLMD appointment coming up because I don't really look sick! I feel terrible but the only visible things are i'm very think from weight loss and got a number of skin issues but thats it for things he'll be able to see.
Obviously I have a number of other non-visible symptoms like joint tightness, GERD, depression, sensitivities to light and sound etc...
I'm just concerned about that since I'm not the typical patient from TV clips where I'm vomiting left and right or more extreme visible symptoms
Comments??
Sorry for so many questions but I appreciate any advice as I know everyone on here has been soooo supportive thus far
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Dawnee
Unregistered
posted
Well I don't know where your recent doc got her degree...butlooking at your results.. how can you NOT have it???
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posted
No, you're not asking too many questions!!! Do more reading here because knowledge is POWER!
and yes,... how could you not have Lyme with those test results!!??
You need to read Dr C's WB explanation. Here is an excerpt:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
When you read his explanation, be sure to read all of the replies to the original posting. There is a ton of good info there.
posted
thanks you two ... ya that's what i understood when i did read up on that before but then this doctor said otherwise but whatever she isn't an LLMD and was just a time filler to try to get antibiotics up my LLMD appointment lol
I'm sooo excited/nervous all at the same time for my appointment and its coming fast ... anymore pointers you think i should prepare to ask him about??
I'll update everyone after my appointment of course.
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Did you EVER have a bulls eye rash? Not all lyme patients get the rash, but if you EVER had one, be sure the doctor has the details and any photos that you may have taken.
sensitivities to light and sound etc... - indicate that it has progressed to the central nervous system. This is a common complaint of those with neuroborreliosis (neurolyme).
Many find that treatment helps that and other symptoms you mentioned.
I hope you can get the Singleton book and read it before your appt. on Oct. 3.
Be sure to rest up for it and somewhere, I think in Treepatrol's newbie links you will find a link on how to make the best of your LLMD appt.
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.
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
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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