posted
I have a friend who is currently bed bound, and can not leave her house. She recently had a IGENEX test and tested positive on a few bands. However her primary doctor who comes and sees her in home does not believe in chronic lyme disease. She is wanting to get some names of some llmd's who might be willing to help interpret her results via phone. She lives in the Philadelphia, PA area, however she doesn't really care where this doctor is. Thank you
Posts: 49 | From Minnesota | Registered: Jul 2009
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posted
What would be your advice to her, being she is bedbound and absolutely can NOT leave the house?
Posts: 49 | From Minnesota | Registered: Jul 2009
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posted
IGeneX medical folks can also talk with her about her test results. 1-800-832-3200.
Posts: 13117 | From San Francisco | Registered: May 2006
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Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Just my 2 cents.
She can have family and friends help her by taking her to a good llyme in PA (I have a list) Dr. getting her in a wheel chair and taking her to the appt with a lyme literate dr.
I really think that if she realizes that a llmd can help her to the point of getting out of bed and having a more productive life possibly this could really work out for her.
She needs to know that some do really well with treatment and she could very well become so much better than what she is living now.
Have her go online and check out some good lyme sites and I think with her learning about the disease and treatment she may really come around to getting help.
Just MHO.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
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posted
Yeah, I don't get why she can't leave her house? She could be taken by ambulance if there is no other way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The cost can be prohibitive by ambulance. I am unable to go out, too, for various reasons. For many, there is just no way. But there is always a way to address the problem.
She should contact her local support group for sure
links to many of the most well-known protocols are listed - pharmaceutical and complementary. You can compare and contrast and then expand your search from there.
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 this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================
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."
posted
Thank you all for this information. I am going to get her specific results from her, and post them for everyone's opinion. She is unable to leave her house because most days even the simple act of using her muscles to smile will set her back for days ....
Posts: 49 | From Minnesota | Registered: Jul 2009
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posted
Oh my - that's pretty severe - does that indicate a great need for magnesium, for the muscles?
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
I posted her results as well as some other pertinent information in medical. Please help if you are able to give some advice.
Posts: 49 | From Minnesota | Registered: Jul 2009
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