posted
This is the letter I delivered today to the internal medicine doc I saw last week for the first time.
I see her again on Monday. She is Dr. "E". Dr. "F" is the general practioner I have been seeing for over a year that doesn't have a clue.
I just want your opinions. Most of you have seen my igenex results and I'm trying to get treatment. Thanks.
October 17, 2007
Dr. E,
I am forwarding this information to you in hopes that you will have a chance to review some of it prior to my appointment on Monday.
Dr. F ordered the western blot lyme testing at my request.
I have received copies of my lyme testing, and although the overall results are deemed egative, there are some positive and indeterminate bands on the IgM.
I've done some research and the positive band (18 and 23-25) are specific for B burgdorgeri. 31, 39, 83, and 93 are also and these were indeterminate (weak positive).
Also, after learning that steroids can affect lyme, I contacted the lab that completed the testing and asked them about steroid injections and the possibility of this affecting the testing results.
I was informed that the multiple epidural steroid injections I had received not long prior to my testing could have lowered my immune response and affected the testing resulting in possible false negative (or indeterminate) testing.
Per the CDC a test is positive if two of the following bands are present: 23-25, 39, 41. I was positive on 23-25 and IND on 39.
Considering the symptoms that have been present for several years and the testing I have been through, I believe lyme should be strongly considered at this point.
Most of my research reveals that lyme is mainly a clinical diagnosis, since laboratory testing can be inconclusive.
I would like to consider a trial of antibiotic treatment and the possibility of retesting as it appears some patients will convert to positive following antibiotic treatment and after taken off antibiotics for 10-14 days. (See information from Charles Chist, MD)
I also realize the likelihood of a jarisch-herxheimer reaction to the antibiotics with the spirochete borrelia burgdorferi. This may in fact assist in confirming or dismissing the diagnosis of lyme.
As a nurse, I am well aware the IgM indicates acute disease while IgG indicates chronic, and I wondered about that with the symptoms that I have had for well over a year.
That initially made me rule out the possibility of lyme due to the test results. However, when I was initially researching lyme, I had found a few sites and had emailed some persons who knew more about the disease itself and more informative sites.
When I received the results, I did discuss this with some of them, and someone mentioned that with lyme IgM tends to be more positive in chronic symptoms than IgG as the B Burgdorferi reproduces itself in new areas of the body and stimulates the immune system to form new IgM antibodies.
I did find more research articles that support this in chronic lyme disease.
There is a world of information out there regarding chronic lyme disease as well as a world of controversy regarding its treatment.
I only know I have been searching for answers for the last year and a half and have not found any. I know lyme is a clinical diagnosis.
I know I have lived and traveled in areas where lyme is prevalent. I know that I have become afraid to continue practicing in a profession I love because of the symptoms I have developed.
I know I have to find answers.
I have not discussed this with Dr. F. I felt that as an internal medicine physician, you would be more knowledgeable of the systemic and neurological involvement of lyme, the testing needed for monitoring, including thyroid, endocrine, and other levels, and the treatment options.
I would feel more comfortable with you overseeing my care in this.
If you do not feel comfortable diagnosing lyme disease based on clinical and what laboratory findings I have, I will understand and will continue to try to find answers and treatment elsewhere.
But I honestly believe in light of the previous testing results, the symptoms, and the research I have done, that this is the answer and that long term antibiotic treatment would help me.
I have provided some of the research materials, and I trust your judgment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
That's a great letter Tamera! (I wish I could write something that coherent.)
Good luck on Monday!
I'll keep everything crossed here.
I've been having trouble with PMs (not pms, I don't think.) Sorry for not answering sooner. I'm hoping for my brain to come back from hiatus.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Letter looks great.
May want to add a part where the lower number of bands present is annalogous with
Body not posting a strong antibody response.
That does not equate with how sick you are.
My LLMD says the lower the bands, (in his experience),
Usually the sicker the patient (like me).
Maybe just a note saying although I do not meet CDC criterion for epidemiological
Tracking, I do exhibit Lyme specific bands that are clearly indicative of bb.
Just a thought.
Once that doc sees "overall negative", they may jump on that and not be able
To allow the important info. you are sharing to permeate their brains.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You GO, girl!!!!
I'd add:
As you know, [and that's generous---they probably DON'T], the CDC itself states their criteria is for tracking purposes only, not diagnosis. More information can be gleaned from the presence of certain key bands than from whether the test is 'CDC positive.'
We're rooting for you. When you meet with them, remind them nicely that antibiotics are commonly prescribed for up to 18 months for freakin' acne, fer cryin' out loud!!!! And make them give you 400 mg a day of Doxy, NOT 200.
Go get em. And thanks for not disappearing -- you are worth fighting for!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
What a well written letter. I certainly hope the doc reads it with an open mind and that you get a constructive response!
I assume from your need to "educate" this doc that you have not been able to find a LLMD...I certainly wish you the best tomorrow!
Elle
Posts: 217 | From New Jersey | Registered: Apr 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Tamera, GREAT letter.
I did notice the 'n' on negative,,,
AND you used the word intially twice in about one line. I do the same thing regularly. it makes it awkward(its about half way thru.)
I sure HOPE you get desired results from this doc. Do you have a plan B 'YET'?? Any more potential docs around that 'might' understand?? Any that relocated from a infested area??(They 'seem' to be able to 'see' the need quickest)
Hope all is well in the land closest to heaven!!remaining-=-just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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