Just returned from my PCP...so far the cardiac workup has been normal but chest pain is still lingering.
All of my bloodwork came back normal (lytes, urine, hepatitis titers, CBC, etc.) and of course through quest - my western blot was negative again.
I am starting to think that I am going crazy...I feel so crappy, exhauseted all the time, diff. concentrating, axiety, chest pain, pain in my muscles and joints, and the headaches are getting worse.
Is is "normal" for everything to look fine on paper and still have Lyme? Lyme is what makes sense considering I am exposed to ticks all the time and had an untreated rash 2 years ago. Has this happened to anyone else?
I see an LLMD in June. Hopefully she'll check for things maybe my PCP hasn't thought of...and yes, I know quest is unreliable and I need to test through Igenex. However, part of me is scared that it will come back negative from that lab, too. Then, I might really think I am nuts.
I just know these symptoms hit me hard at the end of December and I haven't been the same since. You don't go from running 3-4 miles a day and working a full time job while managing family life to feeling complete exhaustion.
I can barely even walk, let alone run. At 32, I should not be feeling this way. I want my life back!
JT
Posted by lymeladyinNY (Member # 10235) on :
JT - those used to be my initials.
Anyway, I look healthy as a horse on paper and have been labeled mentally ill because of it.
But there is NO QUESTION that my health deteriorated after a single tick bite six years ago.
Many people have perfectly normal bloodwork and negative Lyme tests but feel TERRIBLE. The fact that you had an untreated rash and are exposed all the time tells me that you do, indeed, have tick-borne disease!
Babesiosis can cause chest pain - I know, 'cause I live it. It's not just Lyme, but the co-infections that need to be addressed!
I'm glad you're going to an LLMD in June. Can you get in sooner? And you're not crazy, you're sick!
Look around Lymenet for advice. Do a search for any of your questions and you'll likely get some great answers.
Take care and remember, you're not alone! - Lymelady
Posted by Ocean (Member # 3496) on :
Hi,
The only time my labs were bad is about 6 months into this 'thing', they were all over the place.
At my LLMD appointment last week, he said I look great on paper.
My hemoglobin is really good, WBC, E-Lytes normal range. I sure look good too. And the Lyme antibodies were nonreactive.
have you watched 'Under Our Skin'? There are several people on there who said their doctor told them their labs are 'fine', that they are 'fine'.
Seems quite common.
Try to get an Igenex western Blot! Do you have an LLMD yet?? If you have a Chiropractor who will write and order for the Igenex, you can do that if your Pcp won't. We did that for our son, we didn't even want to ask his pediatrician.
Take care,
Ocean
Posted by jtavares76 (Member # 19216) on :
Lymelady...makes me feel better to know I am not going crazy. I am on the cancellation list at the LLMD but it's about a 3 hour drive so it's hard to do with short notice.
Ocean...I attended a screening of "Under our Skin" in Rhode Island a few weeks ago. I have been reading up on Lyme quite a bit lately so I knid of knew what to expect from the film.
My husband, on the other hand, was truly disturbed by the reality of it. After viewing the film. he is convinced that I have Lyme as well.
It definitely opened his eyes to the fact that you may look okay on the outside but on the inside you completely feel like you are being taken over by some alien substance.
I guess I just need reassurance that people have experienced the same thing. Some of these docs deifinitely make you feel like it's all in your head. However, I wish they could live just one day in my body and I am sure they would be singing a different tune.
Thanks for the support! J(jessica)T
Posted by adamm (Member # 11910) on :
Absolutely not. Most Lyme patients will test negative via the curently available measures. I'd try to get a hold of some good herbs to use until you see your LLMD.
jessica, you are not crazy! you're just like the rest of us who have been passed around forever and MISDIAGNOSED FOR YEARS AND DECADES like me ... 39 yrs. chronic lyme;
34.5 yrs. MISDIAGNOSED BY 40-50 DRS!! hello!
Posted by Starfall1969 (Member # 17353) on :
I'll add my vote to the you''re not crazy tally.
I've gone through the same crap with the "normal" bloodwork, "normal" MRIs, "normal" cardiologist exams...but I know I'm not normal.
Yeah, they put on my paperwork at the ER that I have a "history" of depression (post-partum) and anxiety issues.
So I'm now labeled for life, and they won't take me seriously, even though the LLMD says I have Lyme, bartonella and babesia.
So, no, normal tests from the PCP don't mean crap! Hang in there!
Posted by Keebler (Member # 12673) on :
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That " untreated rash 2 years ago" and your symptoms pretty much scream out - be sure to keep that appt. with the LLMD - and ask to be put on the list in case of cancellation.
Do you, by chance, have a photo of that rash for your LLMD?
Of all the links - after you do the basic reading - the guidelines by Burranscano and the books by Singleton, Zhang and Buhner offer you great details in how to get started with great self-care so that by the time of your appointment you've got all that underway.
Stay away from the doctors who are ignorant. No need to hire those without the knowledge to properly assess and treat your case.
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.
Topic: To everyone with cardiac symptoms please read!
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Posted by Dekrator48 (Member # 18239) on :
JT,
Lyme is a clinical diagnosis...means that it is made by history and symptoms and can be supported by labwork.
My LabCorp western blot was negative...only band 41 present.
My Igenex western blot was officially negative(that's just a reporting criteria), but as you can see by the info at the bottom of my post I have several species specific bands present...and that it what was important.
I found a Dr who would order my Igenex western blot before I saw my LLMD...some do this and some don't.
You are not crazy and you will soon have validation, I think.
Posted by jtavares76 (Member # 19216) on :
Keebler...unfortunately, I did not take pictures of the rash.
My husband and I have looked at some photos online of different types of lyme rashes. We came across a pic and my husband shouted out, "That looks identical to the bite and rash you had two summers ago!". Go figure!
JT
Posted by groovy2 (Member # 6304) on :
Hi JT-
Ditto what Lymelady said--
If you had a Bullseye rash you have Lyme- plus any other germs the tick was caring--Jay--
Posted by 'Kete-tracker (Member # 17189) on :
JT, TRY to get in to see an LLMD, or a LLND, before June for chrissake. If it IS Lyme, the longer it's allowed to establish itself in you, the tougher it becomes to get a handle on it!
I'd have you suggest to them to give you a trial run on abx- like doxycycline- for a month, based on symptomology, your location & poss tick exposure. ('LB' IS a clinical diagnosis.)
If you "herx" the next Day, YOU GOT it, Boy! Mor importantly, the doc can then take some blood after the month's up & send it to IGeneX for the Western Blots.
Often the IgM will "light up" as your body responds to all the li'l pieces of dead spirochetes by making anti-bodies. That's what the test detects! Who knows... you might end up "CDC+"! Not that you really WANT that... but it'll cure the mystery.
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