I'm on my 4th bout of lyme, once in 2003, once in 2006, and once in 2007. Each of these times I had the rash and early symptoms(first two times I also found the tick).
To make a long story short, I was under treated with only three weeks of doxy each of these times, I knew no better. The rash and flu-like symptoms went away almost immediately so I thought I was "cured". As a result of this, I am now dealing with many symptoms years later.
I went in to my general care physician about a month ago due to waking up one morning with severe vertigo. I've also been having a terrible headache at the back of my head, stiff, painful, cracking/popping neck and shoulders, very shaky and weak, tingling hands and arms, brain fog, ear problems, blurry vision, nausea, fatigue, insomnia, and others I can't remember at this very moment. These have been going on off and on for months. She ordered some xrays and bloodwork and as an afterthought, also ordered a lyme test which resulted in a positive western blot.
Looking back over the past couple of years, I'm sure that some or all of my odd and troubling symptoms were due to the under treated lyme. Things would be looked into, tests would be ordered, then I'd be told that I was fine.
I've been on 3 1/2 weeks of doxy, 100mg 2x daily. As I'm reading on this site, I know if I want to fully recover, this is not enough and I need to find a LLMD.
My doctor thinks my symptoms are not due to lyme as the antibiotics should have helped if that were the case, but did agree to give me another three weeks of doxy. I am scheduled for an MRI of the neck this week, followed by an appointment with an infectious disease specialist, although I see from this site that they are most often useless so I'm now wondering if this will be a waste of time.
I am now positive that all of my symptoms are from the lyme, which is reassuring to finally have an answer, yet very troubling because I'm finally seeing what a battle this will be for me.
In making this long story short, I see that I've not succeeded! I will blame it on my fuzzy brain.
I suppose I'm still in the research phase right now(I've been reading on here for days) and will keep reading and take the steps and see the doctors as planned.
Then I will be needing a LLMD in the Albany, NY area. Any help would be much appreciated!
Sorry for blathering on so much. It's just so amazing to see so many people like me, going through the same things that I've been going through. The first night I found this site, my mouth was hanging open because I could have written so many of these posts on here.
Posts: 423 | From Upstate NY | Registered: May 2009
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bettyg
Unregistered
posted
welcome topaz!!
check your profile above for my pm to you on albany llmd
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" .
Betty's suggested POSTING GUIDELINES . 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 ``TWICE`` after each paragraph; we need that space for comprehension.
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. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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:
"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." ===========
ILADS 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.
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