posted
I had initially had CDC positive IgM (3+ band), but negative IgG (1+ band) back in June. I had 28 days of Doxy and was 90% better. 2-3 weeks after stopping Doxy,the symptoms all came back. (Tiredness, muscle pain, twitching, parasethesia, myoclonus, bowel and bladder problems, brain fog)I have had MRIs of my head to my tailbone, all negative. Spinal tap- negative, ENG negative
2 Months after finishing the antibiotics, this is my the bloodwork (from LabCorp):
Western Blot IgG: 41 Present/Abnormal 93, 66, 58, 45, 39, 30, 28, 23, 18 absent IgG = Negative
CBC - all normal C reactive protein = 10 High (Normal 0-4.9) ANA and Sed Rate = negative / normal
Doctors keep telling me to go to a Neurologist, it is a neurological problem, not Lyme Disease. I don't know what to do.
Posts: 60 | From NJ | Registered: Jun 2010
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posted
Positive IGM with symptoms indicates active lyme infection. Elevated CRP (c reactive protein) indicates elevated inflammation.
Your 28 days of treatment has not been enough to obtain a cure/remission.
You would be best seeing an LLMD..lyme literate medical doctor as you need aggressive and longer antibiotic therapy. You can do a search under looking for a doc...just post your location. The sooner the better.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
You were under-treated, post in seeking a doctor to find a Lyme specialist near you.
This movie trailer might help you to understand why you were under-treated - www.underourskin.com
You should have been completely better for at least four weeks before stopping the doxycycline. Chances are you were on too low a dose, too ..... you should have been taking about 400 mg per day.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You don't need any more lyme tests. Once you have a positive, until you feel better for a couple months, you should be under treatment -and with specific support measures.
After that, even if you have a flare, no lyme test is needed but you would want to consult with your LLMD to get right on it to calm things back down. There is no cure for lyme but, once in remission, if you slip out of that it's easier to bring under control if you address it early on. Many find good, long remissions.
Now, you do need to find a lyme literate MD (LLMD) and also be assessed for other tick-borne infections.
As you have 57 posts and have been here a few months, I'm very surprised that no one told you that 28 days of one antibiotic at a low dose is not adequate treatment. I don't know how that was skipped over. I do hope you find good, substantial care soon.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LLMD = Lyme Literate MD, one who is "ILADS-educated" so to speak. Many LLMDs also suggest nutritional support, along with treatment.
LL ND = Lyme Literate ND (naturopathic physician), also best if ILADS-educated. Some have completed the ILADS physician's training program. In some states, NDs can prescribe antibiotics. Most LL NDs do suggest antibiotics along with support supplements.
ILADS = International Lyme and Associated Diseases Society
TBD = tick borne disease. There are many tick-borne infections and lyme rarely travels alone.
STEALTH Infection = hidden, sneaky, potentially fatal but still devastating even if it takes a slow approach. Not easy to find with normal tests. Special labs often do a better job with testing.
Lyme is just one of many chronic stealth infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Links to copy and paste to your study file: --------------------------------
- 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.
From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"
Excerpts:
`` . . . Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
* 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. . . . ------
- Be sure to read the full article as it discusses the sharp differences between CDC / IDSA and ILADS' understanding of borrelia.
- 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. ======================
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
============================
TESTING
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:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.
- by Michael D. Parent (2010)
- 82 pages
* This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy. The abstracts are available on U.S. Government's Public Medical Database [pubmed.gov] -
posted
I'm no doctor, nor am I an expert, but I echo what everyong else has said... it sounds like Lyme to me.
Posts: 256 | From Texas | Registered: Jun 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Don't go to the neuro. Your lyme was undertreated. (too low a dose and too short a course.) Find an LLMD fast.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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