posted
Hello everyone. I am new to this group. I was diagnosed in April, though I have been sick for over 20 years.
I'm here to meet others who have this disease and see what tips/suggestions you all have regarding treatment, supplements and just get as informed as I can about this disease.
As you may know, Dr. Joseph Burrascano is the lyme disease guru of the U.S. and probably the world. He is now speaking around the U.S. and other countries teaching doctors how to treat lyme disease.
The doc is the key to getting well from this disease. I had lyme and babesiosis and bartonella for at least 10 years undiagnosed.
I got well once I switched to a lyme doc who followed the Burrascano protocol. Now I tell everyone not to waste their time on doctors who only prescribe low dose antibiotics or one antibiotic at a time, and who don't test/treat you for co-infections. I wasted 2 years treating with a doctor like that.
Here are some tips from Burrascano:
You must attack lyme using combination therapy--requires at least 2 different antibiotics simultaneously to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babs is suspected, and require adherence to rules such as low carb diet, no alcohol, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines.
Also, a Boston TV station did a great show on lyme disease a few months ago. Here is the link to it: http://www.kettmann.com/Lyme
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
I finished my lyme treatment 4 years ago and I am symptom-free, enjoying my life. I wish the same for you.
Be willing to travel and pay out of pocket for a good lyme doc. Very few of the good ones take health insurance, but you can submit your claim to your insurance yourself and get some reimbursement that way.
Read, read, read. And, ask us questions! We are here for you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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bettyg
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posted
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Welcome Cinnamel! I'm new too. You'll LOVE this one: Last month, I found TWO nymphal deer ticks (0ne in each ankle) after a 2 day drive home from the Ozarks.
It wasn't until I got sicker that I realized that Lyme disease had already had a hold of me. I am now sure that this was not my first bite.
I'd been struggling for years (it hurts to be vertical). All of my new symptoms after these two confirmed new bites are only an exacerbation of what I already had.
One thing that shocked me was that I felt absolutely nothing-walking OR biting. Only my eyes told me (with the assistance of my Macro Zoom lens).
I sent the ticks to be tested (came back positive). How did you find out? ...if you don't mind the question.
I'd seen a bazillion doctors, and they were blaming a stenosis in my neck for all of this.
Still, I was glad they found something to blame, even though I knew there was more. The fatigue is profound and unending. Next month I will see my LLMD and have tests.
The ticks were in me 48 and 72 hours (I was so revolted by the first one, that I never checked the other foot! Found it the next day, shaving.)
Again, Welcome!
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
It feels SO unfair! I'm not diabetic, I don't have high blood pressure. I've never done anything that should have taxed my kidneys. I'm only 47. I'm 5'1 & 120lbs. I've tried to stay healthy. I feel like they are all just going to stand back and watch me die.
I just learned from a second, follow up test tht my kidneys still aren't filtering propery. My GFR is 52. I'm SO upset I can't eat or sleep.
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
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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. ![[Frown]](frown.gif)
He spent 2 hours with me and was very knowledgable. 
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