posted
Been back to the doc 3x now. First time did a blood test for Lyme - negative. Now 6 mos later symptoms continue (below) and got another blood test (waiting for results but the suggestion that I might have Lymes at last visit indicated "skepticism" on the part of the doc). My dog was diagnosed and treated for Lymes 9 months ago and I have a herd of deer that (despite my strongest deterrent) traffics through my wooded back yard daily) Prior to this I saw a doc maybe once every 5 years so I don't have much experience at managing my physician and am getting frustrated with the non-answers in the presence of continued symptoms and decreasing quality of life. I'm in the Metro-west area of Boston. Given what's below, should I just keep pushing till I find an MD willing to accept the possibility that this might be Lymes and try some treatment? I was given 1 cycle of sulfa anti-biotics 6 months ago and nothing since.
Chronic nausea, cramps, gas and lose stools. Chronic thick nasal discharge. Brain fogs, neck, shoulder back aches, recurring pain in groin, high sensitivity to light, joint stiffness moves from joint to joint, fatigue (may be a result of months of poor sleep at this point), trouble with speech (started stuttering occasionally), trouble concentrating, difficulty in multi-tasking, anger outbursts and very irritable, low energy levels, tingling in my arms and shoulders (more apt to be left), too much stimulation causes processing difficulties, night sweats, sleep discomfort, and recurring dull ache in left side of chest.
Posts: 1 | From Worcester County, MA | Registered: Aug 2008
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posted
Please post under seeking doctors to find a doctor near you who will be able to figure out if it's Lyme or not. Most doctors are not open to the possibility of Lyme Disease. It's a politically charged battle within the medical field.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Kevin,
So sorry to hear about your frustration and symptoms.
For easier reading, I've broken up the text in your post as many here have trouble reading blocks of type and tracking long lists.
Been back to the doc 3x now. First time did a blood test for Lyme - negative.
Now 6 mos later symptoms continue (below) and got another blood test (waiting for results but the suggestion that I might have Lymes at last visit indicated "skepticism" on the part of the doc).
My dog was diagnosed and treated for Lymes 9 months ago and I have a herd of deer that (despite my strongest deterrent) traffics through my wooded back yard daily)
Prior to this I saw a doc maybe once every 5 years so I don't have much experience at managing my physician and am getting frustrated with the non-answers in the presence of continued symptoms and decreasing quality of life.
I'm in the Metro-west area of Boston.
Given what's below, should I just keep pushing till I find an MD willing to accept the possibility that this might be Lymes and try some treatment?
I was given 1 cycle of sulfa anti-biotics 6 months ago and nothing since.
Chronic nausea, cramps, gas and lose stools. Chronic thick nasal discharge.
Brain fogs, neck,
shoulder back aches, recurring pain in groin,
high sensitivity to light, joint stiffness moves from joint to joint, fatigue (may be a result of months of poor sleep at this point),
trouble with speech (started stuttering occasionally), trouble concentrating,
difficulty in multi-tasking, anger outbursts and very irritable,
low energy levels, tingling in my arms and shoulders (more apt to be left),
too much stimulation causes processing difficulties, night sweats,
sleep discomfort, and recurring dull ache in left side of chest.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes. Absolutely, I suggest finding a doctor well versed in lyme and coinfections, an ILADS' educated LLMD. The terms will become clear in the information below.
Do you know what KIND of tests were done and which LABS? Still, a negative test CANNOT rule out lyme. Also, co-infections must be assessed. The symptoms you describe certainly would have one question tick-borne disease (TBD), especially if your dog had lyme.
Have you had tick attachments? Have you EVER had a bulls-eye rash? Any rash after tick attachments?
A rash is not always present with lyme and there are different presentations of rashes. However, a bulls eye rash is clearly unique for lyme.
The order of the articles below will illuminate the political problems around lyme and, sadly, you'll see why you won't find help from most doctors.
Take care, now. This is surely scary, just remember that knowledge is power and this can get better.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
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:
" . . .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.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
===================== =====================
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
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:
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.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
A synergistic formula of 6 rainforest botanicals which are traditionally used in South America for syphilis (a type of spirochete bacteria) and other bacterial conditions.* This product was featured in an article by the Health Sciences Institute (see page 4).
Third-Party Published Research* - links to research articles
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the ILADS Treatment Guidelines for a better grasp of the task at hand. ( www.ilads.org )
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate and keep up with ILADS research.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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This excellent article explains a lot about what chronic neuroborreliosis can do. It also details other chronic stealth infections, such as Cpn - and others. This is why the correct treatment for the right infections matters so much.
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
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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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy. ![[Frown]](frown.gif)
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