posted
I was told about 7 months ago by a docter that i had lupus and it turns out i didnt. i ended up with lyme disease, so i went untreated for about 6 1/2 months. i have been getting daily antibiotic infusions from the hospital, i have been doing that for 3 weeks now. out of the 3 weeks i have had 3 days of no pain at all, but it came back and came back strong. i have been super depressed and just dont see and end in sight. my docs seem very confused on what to do, is that normal? will i ever be pain free again?
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
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So sorry you are ill!
It is very common to feel worse before feeling better. 3 weeks is just long enough to get a herxheimer reaction. This is when you start to kill the spriochete(lyme bacteria) and toxins are released due to the die off and it makes you feel much worse.
Also, your doctor does not sound like a LLMD(Lyme Literate Medical Doctor), since you say he seems very confused on what to do. You need to go to the search for a doctor section and find a real LLMD. This is a doctor that researches, understands and treats Lyme Disease.
Treatment takes much longer than 3 weeks. It could take anywhere from months to years to get well.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sutherngrl is correct. I hope you can find a good LLMD. Lyme is a very complex matter.
You should also be assessed for other tick-borne infections.
In addition to the Rx, there are several good supplements to help protect your liver right now. Adrenal support, too, will help your strength. Not all LLMDs use supplements but most do and most patients who use a combined approach do better.
Still, the IV abx (antibiotics) are a good step. I think you will need more more expert care, though as treatment should be for at least 30 weeks, often longer.
I'm really tire now but hope others will post Dr. B's link and ILADS and how to find a good LLMD.
Sounds like you have a well meaning doctor who believes you. Maybe your doctor would like to have a LLMD's view on this. But, be prepared as most doctors know very little about lyme and it is very controversial - like a war zone.
Of the supplements that can most immediately help with pain:
Magnesium and Fish Oil.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
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- With apologies. This is a lot to digest. But I wanted you to have a set of links to guide you and for future reference. Even this, though, is just the beginning to literature.
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.
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Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
================
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:
VERY important to read - and if you are required by your current doctor to re-test, you'll know it's not really all that helpful once you have a dx (diagnosis):
Dr C's Western Blot explanation is discussed here:
"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."
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TREATMENT links
- I've included several links here. All are ILADS-educated although they may have some differences in their approach. With an ILADS-educated or ILADS-member doctor, even with differences, you know they have the background and knowledge.
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.
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:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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