posted
Diagnosed in Jan 2011 with lyme by rhematologist. Took doxy for one month. Was retested post meds and was negative. Within a week, symptoms worse than before started. New things each day. Dr. said it wasn't lyme and go get checked out by primary doc. Have seen reaction of other docs that are not on the chronic lyme band wagon. I have over the years been diagnosed with fibromyalsia, IBS, thyroid disease, sarcoid, ADHD ( that have had since birth) and am wondering which came first. Have I had lyme for a long time causing these things,( in 2003 tested positive for IGg band #41 only in western blot test and therefore declared not to have lyme) or did I have those things and coincidentally have gotten lyme now.. I had no knowledge of bite or rash. Before this gets any worse , need to know of doctors who can help. DO any of them take insurance? Thanks Smerrill
Posts: 22 | From Cheshire, CT | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I understand that #41 is non specific. You need to find an LLMD and get your test done at IgenX (sp) in CA. Only an LLMD can truly help you. Post a request for one (include state). This site is great for that.
You should also see the documentary, Under Our Skin. It will clear a lot of things up for you. You can rent it through net flix (dvd), or buy it on amazon. I understand that PBS is playing Under Our Skin all across the nation this month of may too, so you might want to check your local PBS listing.
Lyme is an an unfathomable epidemic of epic proportions. All of us who have it and have seen the documentary know it.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Smerrill
Band 41 is important. While not specific to Lyme the other diseases, Syphilsis, Relapsing Fever can be ruled out by a decent MD.
On the Lyme serological tests, these are blood tests measuring your bodies antibody reaction to the lyme bacteria. The bacteria does not stay in the blood for long. The LLMD's do not consider them realiable but instead diagnose based on clinical findings and use the WB as confirmatin.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Here is the reference I was referring to.
The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this? It cross reacts with other spirochetes. Maybe not.
Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection.
The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. I have reviewing the literature.
Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out. What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever.
What did Steere have to say? These diseases can be ruled out by clinical presentations. Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme. I am quoting a paper co-authored by Allen Steere, circa 1984.
Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no.
The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms. The DNA structure of this spirochete has been worked out. It is very different from Borrelia.
The 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They are antigenically different. This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd.
In fact, the best known dental spirochete does not react with the 41 band. Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes. It is always qualified with the word "may." There is no evidence to support this theory.
All are in agreement that the 41band is specific for spirochetes. The other spirochetes known to cause this cross reaction can easily be ruled out!
To quote Carl Sagan: "When all the likely causes of an effect have been ruled out, then that which remains, no matter how unlikely it appears, must be the truth." You only have a 41 band.
The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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