I'm new here. Just found this site and I'm amazed at the awesome stuff that goes on here.
I need some help. FAST.
I'm a 22 year old just-graduating college gal. When I was 17, I was diagnosed with disseminated lyme disease (co-infected with erlichiosis, bartonella and babesia) and was on iv antibiotics for a year. Being a teenager and freshy in college at the time, I stopped treatment after a year. I was sick of herxing and feeling miserable and mad at the word 'lyme' and everything associated with it. I felt better off the antibiotics (prob cuz I stopped herxing) and ignored the symptoms that were getting worse.
Before that, I spent 3 years going from doc to doc and diagnosed with a variety of things (off the top of my head: lupus, juvenile arthritis, crohns, celiac, gastroparesis) Also been told that it's all in my head and that I'm perfectly healthy. The idea of this all coming from lyme makes sense to me, though I've been told many times that I need a shrink more than anything else. (To which I respond: perhaps I do, but I also need a doctor to help fix whatever is wrong!) I also have all the classical signs of tick-borne infections (muscle pain, joint pain, fog, temperature regulation issues, sensitivity to light etc). To me it seems like something hijacked my immune and autonomic nervous systems. That's just my feeling.
In any case, 5 years later, graduating college and having grown up a bit, I think I need to deal with this bug that's slowly killing me.I don't wanna spend the rest of my life in its company...haven't even lived a fifth of my life yet and it's been with me for 6+ years!
Last time around, I saw Dr. H in Hyde Park NY and he took my insurance for the visit and was able somehow get insurance to pay for most of the treatment. I just called again, and he no longer takes insurance. It's a thousand bucks for the first visit and 250+ for each follow up. (I guess he has to start saving up for his legal defense fund...sad stupid reality )
As a recent college grad (with nothing more than student loans to my name....lol...) there's no way I can afford that plus whatever treatment will cost. I have no home or car to sell/refinance. Don't have very big credit limit on credit cards. Even when I do start working (and hope I'll be able to deal with the herxing at the same time), there's no way I can swing this kind of money.
So here's my question for you people: 1- who would you recommend I see in NY area if money weren't an issue? 2- is there anyone who's also fairly decent but less expensive? 3- this would be ideal. is there anyone who still takes insurance? 4- does anyone's insurance help pay for the treatment - even if they pay for the doc visit?
thanks everyone! i feel blessed to have found y'all.
[ 05-03-2009, 03:46 PM: Message edited by: fighter ]
Posts: 34 | From Airmont NY | Registered: May 2009
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bettyg
Unregistered
posted
welcome fighter and congrats on your college graduation !! that's one good thing going for you!
i hope NYers will join in on additional info for you.
check your profile above for NY llmds i have; that will give you a good beginning on this? ******************************************
also at top of MEDICAL; 1st post i think....how can i afford treatments or something worded similarly to that. read it all & print important stuff ok.
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):
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 the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present. ==========================
TESTING
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. =========== i'm going to try to post a link here with info on SUCCESSFUL LAWSUITS WON ON LYME DISEASE from www.lymenet.org site! look on LEFT side :legal resources" !! all WINNERS!
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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. 
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