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Old 04-21-2008, 08:48 PM   #1
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is chronic lyme curable ?

hi,
i was diagnosed with lyme. my llmd put me on a rotation of antibiotics for a year which put the lyme in remission except for some twitching sporadically.

now last month my symptoms including joint pains, twitching and tremors and
bug crawling under my skalp sensations reappeared. they seemed to
respond to doxy and plaquenil .

i visited my old llmd again for this relapse. he basically had some sobering news : " there is no cure for chronic lyme" is what he told me........and with
that put me on the herbal cowden protocol to treat my symptoms.

is what he said true ? what about the marshall protocol for cell wall deficient
bacteria and rife machines for the hard to get cystic forms of lyme ?

what about brian rosner's book about treating lyme using conventional and
unconventional practices ? i feel like going crazy with the complexity of all this.........

does anyone know about the things i listed above and, very importantly, did
anyone have chronic lyme , get treated and have no relapse again ?

thanks.
desperately seeking a plan !

Last edited by Administrator; 06-02-2012 at 08:55 PM.

 
Old 04-22-2008, 11:11 AM   #2
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Re: is chronic lyme curable ? Experts please respond

There isn't a "cure" for almost all dieases! You did go into remission and that is good news! I have chronic lymes and I believe anything is possible! We have keep pushing the CDC to change their guidelines about lymes. We need better testing and more research so that a 100 percent "cure" is invented. Use your anger and sadness to help yourself and all of us suffering for the cure!!!!

 
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Old 04-22-2008, 02:42 PM   #3
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Re: is chronic lyme curable ? Experts please respond

Hi I believe Lyme disease can be cured. I don't think it is an easy process to go through, and it can take time. I believe with proper treatment you can get better. People have gotten better.

I don't know much about the Rife machine and the Marshall Protocol. If the Marshall Protocol is the one where you avoid vitamin D, I do not agree with that.

Were you tested for the co-infections recently?

Last edited by Administrator; 08-20-2010 at 01:26 PM.

 
Old 04-22-2008, 06:28 PM   #4
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Re: is chronic lyme curable ? Experts please respond

hi ticker,
thank you for being the one to always respond

i was originally tested for co-infections, and according to the igenex report
i was negative for them, but the llmd did check mark my report for mycoplasma.

i am glad to hear that atleast some one feels that it is curable. i would think so too, if treated for the right duration, at the right times, with the right things !

do you know what antibiotics might good for busting cysts in the brain ?

i know flagyl and tindamax are cyst busters. My PA at the llmd's clinic said plaquenil is also a cyst buster. will these work for cysts in the brain ?

thank you very much for writing back.

 
Old 04-22-2008, 07:02 PM   #5
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Re: is chronic lyme curable ? Experts please respond

Hi Do you think you could have been re-infected?

I don't know about cysts in the brain per se, but Flagyl and Tinidazole are good for the cyst form of Lyme. I have heard that Plaquenil is supposedly a cyst buster, but I do not know if it is as effective as Flagyl or Tinidazole.

I took Plaquenil with an antibiotic because it is supposed to help the antibiotic work more efficiently. I took Tinidazole with another antibiotic for the cyst form, and I definitely had herxes.

Last edited by Administrator; 08-20-2010 at 01:26 PM.

 
Old 04-23-2008, 09:28 AM   #6
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Re: is chronic lyme curable ? Experts please respond

Hi ticker,
thank you for your info. once again, i appreciate it very much !

I don't think I could have been re-infected. I am totally certain i relapsed because my prior infection was never resolved a 100%.

I will call and ask my llmd for a script for doxycycline, plaquenil and tindamax
(or something else if he suggests that) and I will do the herbal cowden protocol he has put me on which includes the natural antibiotics cumanda
and samento. I also would like to buy a good rife machine after researching what might be the best one.

i know you have been on this website as a support for quite a few years now.
are you still under treatment too, and what was your story -did you have chronic lyme and coinfections ?

Regards,
oasis

 
Old 04-24-2008, 12:19 PM   #7
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Re: is chronic lyme curable ? Experts please respond

I can say that I believe I was cured, though it was a long road. I've had no recurrence of symptoms since August '07. The proof will be the next 6 months, as my wife and I are expecting our first child in June. Going with inadequate sleep for several months ought to encourage any stray spirochetes to come out and play if any survived.

But since I was on both a regular antibiotic and a good cyst-buster for 8 months (Cefzil with Tindamax), I should be good to go.

I still have residual damage to my intestines from the Lyme's, but that's another thing entirely.

Last edited by Bill S; 04-24-2008 at 12:20 PM.

 
Old 04-25-2008, 01:07 PM   #8
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Re: is chronic lyme curable ?

Bill S -
did you have co-infections and how severe was your case at its worst point ?

My feeling is that maybe some can be cured and some can't........it would
depend on the extent of the infection, how well tailored the treatment was
, how strong one's body is at fighting infections and if the case was complicated greatly by co-infections etc ..........

I too feel that the road to a cure for many might be a long and tricky one, but not impossible..........

I would love to hear more about what your case history was and what treatments you did .
thanks !

And...........congratulations on the pregnancy !!

Last edited by stasis4; 04-25-2008 at 01:08 PM.

 
Old 04-25-2008, 05:28 PM   #9
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Re: is chronic lyme curable ?

Well it's been a real adventure, that's for sure.

I started to get weird symptoms in May 2004. Wasn't diagnosed with Lymes til August 2004, and was pretty much incapacitated. Was given the "standard" abx of Doxycycline 200mg for 3 weeks. Didn't feel any better, and got a bout of C-Diff and yeast infection to boot.

Wandered from doc to doc (the worst and most useless was an Infectious Disease doc), got 2 more tests, both of which were CDC-negative, talked my regular doc into another regimen of abx, but he wouldn't try anything but the "standard" treatment. No effect. Was basically told that Lymes was hard to treat, and that I'd have to live with it.

I carried on until April 2006, with relapses, I'd suffer for a month or two, I'd recover a little, and carry on. April brought horrible changes in my life, and I had the worst relapse yet. Was totally flattened. Even worse, had a large section of my foot taken out because of possible melanona (thank GOD it was merely abnormal and it appears that they got it all). And my father in law was dying from melanoma to boot. I was on crutches unable to even put weight on my foot, had a forced move to a new house (bad neighbor problems) and couldn't even help my wife with her father. I was ready to roll over and die.

I was fortunate enough to find a local doc who was open-minded enough to try new treatments. Turns out that he and a couple people on his staff had contracted Lymes, so he was at least motivated to learn more about it and how useless the standard treatment was. I was tested again and had 4 bands on the Western Blot test. He started me on 400mg/day Doxycycline and it appeared to be helping. He put me on 5 months of Doxy and Tindamax for the cyst form. Then he announced that he was closing his practice and moving out of state :0

So I was back to square one, basically. I kept taking the abx while looking for another doc. A month later I found a Lyme Doc for my father in law in the next state over (he'd been bitten by 2 ticks on the same day; had 2 bullseyes). I ended up calling up that doc, and he's been a life-saver so far.

I had a major reaction to the Doxycycline; little red rashes all over my body that resembled vasculitis. My dermatologist sent me off for lots of tests, all of which came back negative fortunately (some of the possible causes were really AWFUL). My new Lymes doc put me on Minocycline in the hope it'd not trigger such a reaction. Poof, in ONE day, the rash returned. We're thinking I'm allergic to all the tetracycline drugs. Oh no!

He puts me on no meds for a month to allow my immune system to calm down. Once the month was over, he starts me on an interesting regimen of Benicar (to reduce the inflamation so the abx could get at the spirochetes more easily), Vitamin-D supplementation (I was very low onVit-D) and Cefzil. I was to start to take the Benicar but no abx. Interestingly enough, I started to get a few of the red spots during the period when I was ramping up the Benicar and NOT on abx (he later said that he thinks the Benicar has some effect on the Lymes spirochete, but that abx are still needed to effect a cure). We then started up the Cefzil.

After 2 months, we added in the Tindamax.

With this doc I was on:

500mg 2x/day Cefzil
500mg/day Tindamax
40, then 80mg/day Benicar
4000 IU/day Vitamin-D3
tons of acidophilus tabs
Fungal Defense
numerous other supplements to help support my system.

My doc is of the belief that Lyme's is primarly an inflammatory disease, due to the immune system reactions the spirochetes provoke. He uses the Vitamin-D3 25 hydroxyl levels as indicator of levels of inflammation in the body; low levels warrant Vit-D3 supplementation until the levels are consistenly high. He also believes that the Vit-D3 + Benicar combo helps reduce the inflammation that the cyst form of Lyme's creates around itself to hide in the body tissues. This allows the antibiotics to get at the cysts more effectively.

The Tindamax is critical for a "cure" in that it kills the cyst form. If you don't take it plus another abx at the same time, you will probably get a relapse when you stop the abx.

As for tests, he did a typical standard test regimen, plus specialized thyroid tests, stool tests (which detected major yeast overgrowth and food allergies to soy and dairy), several CD-57 tests, several Vit-D level tests, several Babesia tests (all negative).

All told, I spent over $6000 USD, with only about 10% reimbursement from insurance (out of network doc since I could NOT find an in-network doc who knew how to handle my case). Add in about $5000 in prescription meds and supplements. Add in about 2 years of not working much. Lyme's cost me about $40,000 all told.

Last edited by Administrator; 08-20-2010 at 01:27 PM.

 
Old 04-25-2008, 07:40 PM   #10
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Re: is chronic lyme curable ?

hi bill,

thanks for sharing your story with all of us. it makes me feel like there's hope, even if i'm still in the thick of it.

i wanted to ask about your rash - so it went away once you went off the tetracyclines? according to Dr. R's tests the macrolide and ketolide (i think - i could be way off base. Biaxin and Levaquin are the two i'm on) are the most effective for me, but i'm covered in rashes right now. i've had small rashes since getting bitten for the 2nd time so i assumed it was from the bartonella or babesiosis, but now i'm wondering if i should hold the meds. what a crazy disease, eh? it's one thing after another after another.

i'm glad you're out of the woods now. congrats on your recovery and your pregnancy. i hope we continue to hear from you every once in a while.

thanks again,

kt

 
Old 04-26-2008, 01:51 AM   #11
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Re: is chronic lyme curable ?

Bill - i too would like to thank you for sharing your story. And I am glad that
you were able to effect a recovery. This disease did put you through alot............


My own story has several similarities with yours as far as the difficulty in getting a diagnosis, then finding a competent doc and being able to get treated goes.

Currently i too feel like i am in a pressure cooker or a tinder box because
in addition to other life challenges, i have the misery of this disease to cope with and figure out using my own efforts.

Interestingly, ever since i got bitten in 03, April for me too has been a month
of relapses. my most severe illness was in April 04 when i felt like i was about to die, my body temperature was so high and there was such an intense internal reaction going on in my body............

but i am quite positive that given the hard work i am putting in for dealing with the seemingly small amount of residual infection, i should be able to put this past me for good..........

You wrote that at one point one doc just told u to live with it ! how can someone say that without being callous to some degree ? I also remember being told before I was diagnosed, at one point when i was quite sick, to "come back when I had more symptoms", because this doc was unwilling to do anything for me even though i begged him for a trial dose of abx........

"physician first heal thyself" is what comes to mind..........

 
Old 04-26-2008, 05:05 AM   #12
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Re: is chronic lyme curable ?

We never did figure out what the rash was, per se. However, we did note that after I was off the "offending antibiotics" and my doc wanted me to try a blend of mushroom extracs to boost my immune system, that the rash came back shortly after starting that up. The doc was theorizing that maybe the mushrooms were having some sort of anti-fungal effect, killing off the plentiful Candida I had, and causing the rash. In any event, stopping the mushroom extract made the rash go away.

We still aren't sure if it was a actual drug allergy or a side effect.

Yep, I still hang around here from time to time, spreading encouragement and advice.

Last edited by Administrator; 08-20-2010 at 01:27 PM.

 
Old 05-23-2008, 09:19 AM   #13
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Re: is chronic lyme curable ? Experts please respond

Quote:
Originally Posted by Bill S View Post
I still have residual damage to my intestines from the Lyme's, but that's another thing entirely.
Hey Bill,

I'm new on the Lyme boards, but how do you know that you had damage to your intestines from Lyme? Is this because of the way you feel, or by diagnosis of a test that showed the damage.

I'm curious because I am in the process of getting a Lyme work up and my intestines are messed up, but all GI tests came back negative.

Thanks!

 
Old 05-23-2008, 09:00 PM   #14
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Re: is chronic lyme curable ? Experts please respond

What is rife machine?

 
Old 05-24-2008, 04:19 AM   #15
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Re: is chronic lyme curable ? Experts please respond

Quote:
Originally Posted by chris0007 View Post
Hey Bill,

I'm new on the Lyme boards, but how do you know that you had damage to your intestines from Lyme? Is this because of the way you feel, or by diagnosis of a test that showed the damage.

I'm curious because I am in the process of getting a Lyme work up and my intestines are messed up, but all GI tests came back negative.

Thanks!
My doc did blood testing that showed that I had antigens to soy and dairy, along with colonic inflammation. However I later had a endoscope (due to other reasons), and samples of my upper intestinal wall were taken, and they showed no inflammation. Go figure.

To this day if I consume any kind of dairy, I get all woozy, light headed, and can't concentrate. The symptoms come and go, but can last for upwards of a week or more. What seems to be happening is that the casein protein (through a process I understand poorly) attaches itself to the opiate receptors of the brain, giving the same reaction as if you'd done some sort of opiate drug. A number of docs working with autistic kids have noted the same kind of reactions, and the kids improve greatly after being taken off dairy.

Soy, I just get a flush and reddish rash on my chest, so far.

 
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