I just noticed the memebr numbers. 139 - boy I'm old! It took 5 years and I beat Stage 3 Neuro lyme and was healthy for 4 years. I think I was recently reinfected. I'm back and looking for help and willing to share what i can to help others. Let me know how. Good health! JP
Posted by Dekrator48 (Member # 18239) on :
Hi and welcome back!
I am happy to hear you beat stage 3 neuro lyme, but what a shame you have been reinfected.
I'm sure there will be lots of ways that you can help others here.
Hope you are getting the help you need to beat this again.
Posted by bettyg (Member # 6147) on :
sorry you are back bean; i remember you; you may not remember me since i was a newbie back in the days when you left here.
be sure to go to ACTIVISM and you can help there on all the LYME projects going on:
contacting your federal house reps/senators to be CO-SPONSORS of HR 1179 and senate bill no. not assigned yet;
may is lyme awareness month;
conn.'s house reps PASSED their lyme bill to senate!!
just lots of things going on ...
i'm going to treat you like a newbie and send you some of the latest info in case you'd never seen any of this 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!
Posted by Peedie (Member # 15355) on :
Hi JP - thanks for the offer to help! I'm wondering if you can list the ten most bothersome symptoms you had - and what you think you took that addressed those symptoms?
Here's mine:
1. Pain in both legs and in groin ( sometimes with neuropathy)
2. Buzzing in ears 24/7
3. Something Parkinson's like wave of tremors thru neck and head. - scarey -
4. Heart palpitations and cardiac irregularity especially at night when trying to sleep.
5. Unable to control body temperature - ramdom hot and cold.
6. Extreme fatigue - not as scarey but a real problem concerning work and social obligations.
I've had more but they seem to be resolved for now. If you can offer any advise - I have tested neg. for co-infections and had multiple bands for Lyme but tested negative at Igenix. I think I was infected 15 years ago. I have been in treatment with a LLMD for 10 months.
Thanks -peedie
[ 05-05-2009, 04:24 PM: Message edited by: Peedie ]
Posted by Lyme n Bean (Member # 139) on :
Peedie, I'm posting an excel spread sheet today to help people track symtoms and try to help with moving forward or backwards.
Bottom line i had all your symtoms plus it took 3 year to get back to regular health with multiple relapses. My best advise. NO Sugar, No caffine, regular light excercise Valerian root for anxiety and sleep.
Look for "lyme tracker"
Posted by Tincup (Member # 5829) on :
Hey Bean...
Welcome back you old one you!
Posted by Peedie (Member # 15355) on :
Thanks JP !!!
Posted by tdtid (Member # 10276) on :
Lyme n Bean,
It's fantastic that you were able to beat neuro lyme. I'm sorry that you may have been re-infected since that has to be extremely discouraging.
So far I've been avoiding all sugar and caffeine as you said and trying to get in exercise but haven't done the Valerian root since my diagnosis.
I didn't have any luck with it back pre lyme diagnosis days, but hey...maybe it's time to try it again.
In any case, I'm sorry you are back, but glad you knew where to come. Good luck.
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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. ![[Big Grin]](biggrin.gif)