I was diagnosed with Lyme on 07/04/08 (from labs drawn on 6/30/08) after screening positive at 1.40, bands 23 and 41 reactive. SED rate 32. Treatedwith 4 weeks of Ceftin, referred to Rheumy #1 when not improved.
Rheumy drew more labs on 7/25/08 that showed increasing Lyme screening positive at 3.11, bands 23 and 41 still reactive. Those labs also showed babesia reactive at 1:20.
Referred to Rheumy #2 (#1 was complete, frightening and uneducated quack). #2 advised more labs. Results returned today by Rheumy over phone. She states SED rate still slightly elevated at 22, but Babesia is now NEGATIVE. She feels original Babesia was formerly borderline and NOT positive. Probably a testing error. Lyme screen still very positive( unsure of numbers) as well as IgM positive.
I am hoping to get appt with LLMD, but in the meantime, I am feeling awful. Rheumy #2 wants to treat with 2 weeks of Doxy.
Any advice?
Posted by Lymetoo (Member # 743) on :
Dump the rheumies!!!! Go straight to an LLMD. Let me know if you need names.
Welcome!!! Posted by lymebytes (Member # 11830) on :
I second Lymetoo...get to an LLMD asap, mainstream MD's (even "specialists") know NOTHING about tick borne diseases.
Take care.
Posted by Keebler (Member # 12673) on :
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Yes, you need a real lyme doctor. Someone who is at least familiar with all the research by members of ILADS.
You were treated with one drug (mono-therapy is not advised with any tick-borne disease) . . . and for too short of a time.
Babesia still needs to be considered. You need a better-educated doctor.
After reading a few articles below, you'll have a better picture of why you don't have time to waste with doctors who have not educated themselves about TBD. This is NOT taught in medical school.
Good luck. And, be sure to breathe and take good care of yourself. Take frequent breaks from your education about this.
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed here do to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
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.
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AFTER reading the Savely article (link above) this will make more sense
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.
Thanks everyone. I just made an appointment with a LLMD. The only problem........the first appointment available for any of the 3 docs-------6 weeks from now. Do you think I should take the 2 weeks of Doxy the Rheumy is prescribing?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Avalon: Do you think I should take the 2 weeks of Doxy the Rheumy is prescribing?
YES! Good job on finding an LLMD. Hope he/she is a good one!
Posted by Keebler (Member # 12673) on :
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I'm so glad to hear that you have an appointment secured.
Others can better say about the doxy. My guess is they will say "yes" -
I wonder, if you have six weeks to go, if stretching it out might be good - or using it all at once.
you might ask around at the local support group and see if a LL GP might tide you over.
You could also ask your soon-to-be LLMD's office what they recommend while you wait.
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in the meantime, while you wait, you can learn all about this and you might consider some herbal supplements.
I'm pretty big on education, so I've got a couple more suggestions.
Here are two books, each very different, but along the same lines in that the may be combined with antibiotics (abx) but they don't have to be.
You might just try a simple one like olive leaf extract to keep you somewhat stable after the abx runs out. You'll have a month, then, to wait.
In addition to the Singleton book above that is vital in describing how to take care of yourself now (and he outlines abx and supplements), you might want to read these.
Even if you don't choose herbs, there is a lot to learn and most LLMDs use some type of supplements.
Lyme Disease and Modern Chinese Medicine (Paperback) by Dr. QingCai Zhang (Author), Yale Zhang (Author)
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
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This book has only one reference to lyme (in the historical use of sarsarparilla for another spirochetal infection). However, it is a vital first book to read - or a reference - for anyone interested in understanding nutritional methods.
Just reading about how the liver works is helpful to understanding why the liver is so affected during lyme treatment.
Milk Thistle is just one herb that is common in most lyme protocols - you can look up here.
Graciously, much of this book is on line. It can also be purchased from this site or through Amazon where you can look inside the book and see many customer reviews.
Oh, and there is some promise in the specific use of light.
there are a few threads about the Bionic 880, a treatment in Germany that uses no pharmaceuticals and many have seen help.
The thing is that it's not available here in the U.S. now, but many from here are going there. Some do great. Some see improvements. Some don't see the help they had hoped.
however, in treating an early case, it may be much more effective.
And, it would be for you to say. I think we have a right to know all the options, so I mention that.
You can search here for Bionic 880 and find several threads.
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