LYME DISEASE SUCKS!!

TAKE ACTION! NOW! (- click here)

Check out the recent Lyme protest at Westchester ...'medical center'... (i.e. I wouldn't want to be at this , UH, ...'facility'... if I waere very sick!). But hopefully, something positive is in the air. We'll see; do you think they'd call in the national guard to , uh, ...'protect' this joint against a bunch of disabled people? Maybe so, given the amount of compassion the sickos who have ..'risen'... to power in our unfortunate land have demonstrated!

BUT ANYWAY,... Here's my story, and links to some real INFO, not the kind of ... ...'info'...

... bandied aboud by ...'doctors' (DUCKS) and ...'practicioners' ( of what...?) following the official recommendations of the corporate dictatorship and keeping people sick, in order to minimize 'insurance' outlays, among other seedy goals:


..One day a few years ago I was birdwatching, along with with friends and family, in Brigantine, NJ. It was a very nice trip, except I got some ticks on me. I had heard of lyme disease, but had read that, if you caught it right away, it was no big deal. I was very healthy and wasn't all that worried. WELL, one of the bites where a tick had been attached developed a red ring around it. So I went to a medical center, and was put on the antibiotic, doxycycline 100mg twice a day for six weeks.. So I went on my merry way, thinking that I was lucky to "nip it in the bud". WELL...,a month and a half later I got very sick. High fever, nausea, body aches, out of it. Flu in late July? could be, I guess, but had never happened to me before! Back to the doctor's ... more doxycycline, same dose. Big pain in the neck. Literally, too, along with pain also in shoulders spreading to hips, as well. Soon I was a complete basketcase. Doxycycline helped just a little, then I got worse for the third week, then considerably better the 4th and last week on that antibiotic. WELL, still not the end. I started getting worse again. I started doing more research on Lyme disease. I knew it could be really nasty once it gets "in there'' since other friends and family had had alot of trouble getting over it. But they hadn't been treated right away. But after some investigation I found out that relapse was common, and that the ...'normal' treatment for lyme was often insufficient. I hate taking drugs, but if I had known the reality of the situation earlier, I would have gladly have put up with it. If I had had a longer stronger dose at first, as well as found out about some other infectioons I got from those ticks and treated them, I probably COULD HAVE AVOIDED more than 2 years of misery and thousands of dollars in drugs and medical fees. I found out that I needed to find a lyme specialist- a "lyme-literate" doctor. Easier said than done, since, at least for lyme disease, doctors are apparently, I discovered, not allowed to give treatment that is effective, unless it is also dirt cheap ('insurance' companies seem to run the show),or perhaps if it the ONLY way anybody EVER gets over the diseases ...'covered'. I finally did find a doc who knew about thes tickborne illnesses. I learned I had Lyme disease, "Ehrlichiosis". and "babesiosis", and started a program of long- term antibiotics at super-high doses of several antibiotics at once, along with some nutritional supplements, and several herbal meds and supplements, as well as anti-malarials, both standard and chinese (for babesiosis, since I'm at high risk for that, having lost my spleen due to injuries from a car crash.. I went through lots of ups and downs, but steadily got better. My doc had me go through several changes of antibiotic combinations. Doxycycline 400mg/day + ceftin 500md/day; then after several months switched to 'biaxin' (clarithromycin is the "generic" name),1g/day +amoxicillin, 6g/day (started artimesia anua and garlic somewhere in here, mainly for babesiosis, as well as grapefruitseed extract (250 mg, or 25 drops.) and olive leaf extract (also 250 mg)); then to doxycycline, 200mg (doxy in case there was any ehrlichia left, I think) + clarithromycin1g.day + atovaquone combi, 'malarone', and continued artimesia anua and garlic, then finally to clarithromycin and tinidazole (tinidazole is a special antibiotic that kills the "cystic forms" of the lyme spirochetes).

I took all these drugs for two years and a few months, and I do indeed seem to be over it!! I'm still yet building back physical stamina, and occasionally have an "echo" of the arthritic pain, as well as continued residual concentration problems, but I still feel I'm generally improving.

Oh yes, also, I joined a "health club" after discovering that the sauna was very helpful for symptoms, and began to use the sauna daily-- it seemed like this may well have had an effect beyond simple symptomatic relief, too.

Of course, there's always the insecurity-will it come back, at the worst possible moment--is there even one spirochete or plasmodium left that lived through all those chemicals? And of course, there are still ticks out there. All it takes is one tiny tick, unnoticed, and you're bach to square one. But now I know what to do- you can't wait even an extra day!
If you are bitten by a tick, don't wait for symptoms to appear-- it's well worth it to just start a course of doxycycline immediately! And if you are in an area where there has been any babesia, it may be a good idea to start a 6 week course of artimesia annua! (don't take artimesia anua continuously for longer than that, as it is slightly toxic)



Note-- I have also heard some positive reports about "rife" (in person), though I didn't try it myself.

Some things to avoid:
1) ...'celebrex'....-HIGHLY poisonous; I almost had to go to the hospital after it ate holes in my intestines (maybe I should have, since I could have sued the spuds out of the poison's manufacturers, but of course we don't think of such things when we're suffering! There might even be some permanent damage; I am still working to heal any that there is left....)

2) steroids- luckily I avoided this; from reports I see I might well STILL be sick if I had been given these, which I have a feeling I was not far from, if I hadn't found a "lyme-literate" doc!

Feel free to email your story, observations, or questions!

nocarsdave@clarityconnect.com


Here are some Links to, INFO! (not just, you-know, uh, ,... ...'info'... ... ...(you know what I mean!)) about this horrible sickness:


LymeNet Flash Discussion. (warning-..'cookie'.... alert)- but otherwise, very good, and very active.
note-- You may have to ...'sign up'... (and allow your puter to be infected with some ...'cookies'...) to use the Lymenet pages, but it's definitely worth it-- there is much good info to be found and the 'cookies' are not pernicious, as far as I can tell; they seem to mostly store passwords and maybe some (hopefully a reasonable amount of....) "user info"....

LymeNet "flash discussion" has sections:
"Medical Questions" (most important for lyme issues),
"general suppport" (this has some good info, too);
And there's
"off- topic", to argue about politics or philosophy, etc.), as well as:
"Seeking a Doctor", to locate one of those rare doctors who know how to treat lyme and has the guts to do it.
Also, there's an "Activism" section having to do with bills in congress to reform America's medical practice so doctors that treat lyme aren't persecuted, and supporting real research, etc.

Finger Lakes Lyme--
-our local mini- group here in the finger lakes area of New York; yep, there is indeed Lyme here. but I think the coinfections are not as common and not as nasty here. Many of us were exposed in other locales, though.
Ithaca Lyme 'meetup group' --nope; this link died due to coorporate greed...- the jokers wanted to screw sick people who have to spend every last cent (and more) on docs and medicine, for dough. WELL, thumb- (and other..) screws to them!

Our finger lakes lyme group still meets on a certain thursday each month; try the 3rd thursday, at Greenstar Cooperative Market, at 5:30 pm, in the front of the store at the tables there. .
Here are a few of us, at a meeting:a few months ago:(as usual, "click the link"...)
A Few Finger Lakes "Lymies"

And, Here is a new "yahoo" group for lyme that someone stated...

If you can manage to be so noble as to donate to lymenet, you can do that from their wenpages, too. (but you might have to accept a few other ...'cookies'..., since it's a third party ('paypal') site, and some of these may be pernicious- but I think there are programmers there that will work to keep a watch....).


LymeNet Home Page
LymeNet Support Groups
LymeNet Literature Library
Some Legal Resources
LymeNet Medical & Scientific Abstract Database
LymeNet Newsletter Home Page
LymeNet Recommended Books
Tick Pictures
Search The LymeNet Site
LymeNet Links
LymeNet Frequently Asked Questions
About The Lyme Disease Network


Here are some other (some of same, most likely, and I can't guarantee validity, etc.) links, but for most of these you've got to copy the address into the address window; you can't just click on it....):
Dr. Joseph Burrascano Treatment Guidelines: http://library.lymenet.org/domino/file.nsf/bbf2f15334c1f28585256613000317cc/9c1ac876bb7897f5852568ec0056eb02?OpenDocument

Symptoms Information- When to Suspect Lyme Disease:
http://cassia.org/essay.htm
http://flash.lymenet.org/ubb/Forum1/HTML/005804.html

Lyme Disease Audio Network: http://www.lymediseaseaudio.com/
CherylÕ's Lyme Site: http://www.lymeinfo.net

Neurotoxins: http://www.chronicneurotoxins.com/lymedisease.cfm
http://flash.lymenet.org/ubb/Forum1/HTML/004669.html

Lyme Misdiagnosed as:
http://www.geocities.com/lymeart3/lyme- misdiagnosed-as.html
IGeneX Lab (Lyme, Babesia, Ehrlichia, Bartonella testing
http://www.igenex.com/
Bowen Lab (Babesia, Lyme testing): http://www.bowen.org/Bowen_Borrelia_results.html
MDL Lab (Lyme, Babesia, Ehrlichia, Bartonella):
http://flash.lymenet.org/ubb/Forum3/HTML/001501.html
False negative Lyme tests: http://www.ilads.org/position.htm
Western Blot Bands: http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt
Various strains of Bb: http://www.pasteur.fr/recherche/borrelia/Borreliaspecies.html
Lyme Disease: The Sensible Pursuit of Answers: http://www.x-l.net/Lyme/li.htm
The Complexities of Lyme Disease: http://www.lymealliance.org/research/grier/grier_1.php
Persistence or relapse of Lyme disease:
http://www.geocities.com/HotSprings/Oasis/6455/persistence- links.html
http://www.geocities.com/HotSprings/Oasis/6455/persistence-special- abstracts.html
Lyme and Fibromyalgia: http://www.geocities.com/lymeart3/fms- index.html
Lyme and Lupus: http://www.geocities.com/lymeart3/lupus-index.html
Lyme and MS: http://www.geocities.com/lymeart3/ms-index.html
Lyme/Heart: http://www.geocities.com/lymeart3/heart-links.html
Gastrointestinal: http://flash.lymenet.org/ubb/Forum1/HTML/001560.html
Herxing: http://flash.lymenet.org/ubb/Forum3/HTML/000247.html
http://www.x- l.net/Lyme/abstracts/herx/herx.collection.html
http://flash.lymenet.org/ubb/Forum1/HTML/000638.html

Neuropsychiatric: http://x-l.net/Lyme/Fallon95.htm
http://www.mentalhealthandillness.com/tnaold.html
http://www.mentalhealthandillness.com/lymeframes.html
Sexual transmission: http://flash.lymenet.org/ubb/Forum1/HTML/004469.html
http://flash.lymenet.org/ubb/Forum1/HTML/000909.html
http://cassia.org/library/Jama_May15,1996_mednews&perspect.htm
Dual Infection: http://www.niaid.nih.gov/publications/dateline/0996/page3.htm
Babesia: http://flash.lymenet.org/ubb/Forum1/HTML/001624.html
http://flash.lymenet.org/ubb/Forum1/HTML/003767.html
http://x- l.net/Lyme/abstracts/98.human_babesiosis.htm
http://flash.lymenet.org/ubb/Forum3/HTML/000677.html

Ehrlichia: http://www.vetmed.ucdavis.edu/VBDP/granulocytic/Relate-W.htm
http://www.cdc.gov/ncidod/EID/vol2no1/walker1.htm

Rocky Mountain Spotted Fever: http://flash.lymenet.org/ubb/Forum1/HTML/002027.html
http://flash.lymenet.org/ubb/Forum1/HTML/003351.html
http://flash.lymenet.org/ubb/Forum1/HTML/001999.html

Bartonella: http://flash.lymenet.org/ubb/Forum1/HTML/004846.html
Chiropractic Neurology Referral Site: http://www.dendrites.com/

Tick pictures:
http://www.ent.iastate.edu/imagegal/ticks/

Rash pictures:
http://www.lyme.org/gallery/rashes.html
http://www.lyme.org/gallery/gallery.html

...'insurance' (yeah, right..):
http://www.geocities.com/HotSprings/Oasis/6455/insurance-links.html

Free meds:
http://flash.lymenet.org/ubb/Forum1/HTML/004031.html

Lots of links on Lyme Disease: http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html


Feel free to email your story, observations, or questions!

(To send "ee-mayil" to me, replace "[at]" by "@" in the following (Please excuse my experiment to see if I can reduce spam by confounding the bots that send it....)--

nocarsdave[at]clarityconnect.com

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