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!
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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