good news re: the german doctor schardt's lyme protocol.
sunday of last week i ended the first leg of the schardt protocol, the 50 days of 200 mg/day diflucan. also last week, i started the second leg of the schardt protocol, the 14 day round of penicillin (amoxicillin, 1000 mg 3x/day, is what my llmd prescribed). (for those of you unfamiliar with this protocol, it is just what i described, 50 days of diflucan, then 14 days of penicillin. then you do that complete 50 day & 14 day protocol 2 more times. details found here: http://www.immunesupport.com/library/showarticle.cfm/ID/6431).
2 days off the diflucan i experienced a noticeable 2 hours in which i felt "normal": i mean, i felt an absence of intense exhaustion -- very rare for me (by the way, i have had this illness for 17 years. ugh!). then the "normal" feeling went away and i was back to my usual exhaustion. then the next day, the same thing: an absence of exhaustion for a few hours. then the next day it lasted longer, almost all day! by friday of last week, i was at the full dose of the amoxicillin and i was doing pretty darn well. so i went for a walk on saturday, even tho i had not gotten enough good sleep. i guess that was a mistake because i crashed big time -- back to bed with me!
but the next day (today) i was back to doing well and i did more physical work than i have in years, i think. i did yard work for 3.5 hrs! and then out to dinner, too! in short, after 3 solid months of being super sick (the same time i was on the diflucan, tho it did not feel like the "super sick" state came from the diflucan, it just felt like a normal relapse) and thus in or near my bed for the whole freaking summer, today i have been active all day and not exhausted much at all.
all this is pretty amazing for me! i felt like i totally different person.
i am trying not to get my hopes up, as every time i have done that in the past it proved to be a mistake. (case in point: i went on wellbutrin (sp?) once for my illness (when it was diagnosed as CFS). i was wonderful -- near healthy -- for 3 weeks, then i crashed hard for 6 months. same with florinef (sp?): i was healthy and "normal" for 2 months and then crashed hard for a loooooong time. so, as you can see, i need to not get my hope up too much.
but anyway, just wanted to give you all an update. this is where things are at since going off the diflucan. not sure if this good spell where i'm feeling like a normal person is from the diflucan, the amoxicillin or just getting out of the relapse.
time will tell, i guess.
cheers, rivka (if you want to email me, please reach me at [email protected], not via lymenet)
Posts: 17 | From boston | Registered: May 2006
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Truthfinder
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Member # 8512
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Thanks for posting about your progress with Schardt's protocol, rivka. This is a treatment that I am very interested in.
Not all of us are well-suited for the long-term abx protocols, and this seems to be a very promising alternative.
Hope your good spells come more and more often!
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
I'm on the Diflucan/Penicillin protocol, too. Finished the 50 days of Diflucan on Monday of last week.
Curious about one thing - You said you'll take amoxicillin for 14 days. In the interview on the link you gave, Dr S recommends 20-30 days of penicillin.
Is there a reason for the shorter time?
So glad you're feeling optimistic about the treatment.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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yes, i am taking only 14 days of penicillin instead of the 20-30 days written about in the article because i emailed dr schardt directly just before i began the protocol and he told me that the protocol has been improved. this was his email to me and my email to him below that.
EMAIL FR DR SCHARDT MAY 26, 2006 From : Prof. Dr. med. F. Schardt Sent : Friday, May 26, 2006 4:55 AM Subject : Re: diflucan treatment
An improved therapy is now 50 days fluconazole [diflucan], 2 weeks penicillin and 2 times repeating this scheme.
Sincerely F.S
> Hello Dr. Schardt, > > I have had Chronic Fatigue Syndrome and/or Lyme for 16 years. > > I am hoping to begin the Diflucan protocol that you describe in the below > article. Are there any changes to the protocol since this article was > written? > Thank you so very much! > > Rivka
Posts: 17 | From boston | Registered: May 2006
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posted
by the way, i have the original article he wrote a few years back, if anyone wants that. just email me directly for it: [email protected]
note to cbb, who said s/he finished the 50 days of diflucan the same day i did: how are you feeling now? did you feel bad on the diflucan (i did)? do you feel better now, off it? did you start the penicillin?
also, i REALLY want to talk to others doing this protocol. anyone doing it want to chat via phone?
warmly, rivka
Posts: 17 | From boston | Registered: May 2006
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posted
Thanks for your info - very helpful for me. I sent a link to your article to my parents and printed out a copy for me and one for my acupunturist. I have chronic lyme, and was put on diflucan this summer (I thought for yeast) by my LLMD. I did 2 rounds of 20. Anyway, it about near killed me - the herx was so bad. I went from almost fully fxning to being practically a shut in! I guess the worst part is I thought I was done with Lyme.... I didn't understand the relationship btwn diflucan and borrelia Anyway, just saw my LLMD who thought my herx was just "great" I disagree, but it's clear that diflucan is very effective for me... We discussed I will need to go back on it at some point. I am actually going on her rec to NYC to see a chiro who specializes in kinesthesiology (sp) - he is going to help determine what amnts of supplements/diflucan I need
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
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For those of you who've done this protocol, did your liver enzymes stay within a normal range? Did you have to check your liver enzymes more often or do extra liver support?
My LLMD had told me about this protocol quite a while ago, but then we decided Diflucan would be too hard on my liver.
But perhaps we will consider it for the future, so I'm interested in your posts.
Thanks, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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larkspar: tell me more about yr herx. i too got worse on the diflucan, it i think it was a "normal/regular" relapse. only it strangely lifted two days after i went off the diflucan (which was the same day i started the penicillin). coincidence? who the $#@! knows.
jill e.: i did a liver function test monthly. all was fine with each test.
the one thing that DID happen that was out of the ordinary was that i got excessively thirsty. i mean, REALLY thirsty. i had to drink 2 gallons of water a day, and still that was not enough. this only happened when i did something else in addition to the diflucan (it was a heavy metal detoxing program called "detoxamin. more info here http://www.detoxamin.com/index.asp?pgid=1)
i think my liver or else my body in general could not handle all the chemicals or die-off of lyme or or or or... and that is why i got so damned thirsty. i stopped the diflucan and detoxamin for 2 weeks, which is how long it took for the thirst to go away. then i went back on the diflucan and not the detoxamin. one thing at a time, i decide. :-)
warmly, rivka
Posts: 17 | From boston | Registered: May 2006
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Well I have been battling severe/chronic lyme for about 3 years but may have had it forever. Like for 35 years or possibly born with it (my LLMD's latest hypothesis.....) I am 37.
Anyway, I have been trying everything under the sun to get better, and this spring I thought I got the darn thing into remission at least. Then I got a flu like virus in June, which threw me for a loop....
Then I was put a heavy dose of diflucan in July for yeast by my LLMD, not realizing that it was going after b.b. still in my system.
The herx was miserable - lots of neuro symptoms I haven't had since my acute onset 3 years ago, joint pain and stiffness, super severe fatigue, fogginess, vision issues, lots of crying, headaches, weird skin stuff, blood blisters (which scared the bejeebers out of me) etc etc......
So I bascially went from functioning at least moderately most days to hardly being able to leave the house. I saw my LLMD last week who believes the diflucan primarily targeted borrelia (I have yeast and mold issues too) Anyway, this summer was a horror.
The plan now is to stop just about everything and see this chiropractor in NYC (next week) who has some sort of machine that will measure what amount of diflucan and supplements I need etc. I think it's like energy testing but a bit more scientific - referred to as Kinesthesiology (sp) I told my LLMD that once I am hooked up to his machine it will prob start producing black smoke smoking and break b/c I'm apparently so dang toxic!
Once I see him, we will revisit the diflucan issue b/c it obviously works for me to treat the bb, but hopefully on a much more tolerable scale. I had not heard of combining the diflucan with penicilin - definately something to look into.
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Hi! R - to answer your question I think I'm finally starting to feel better after the diflucan herx - it's still day to day; but as soon as I went off of it my fxning increased a little bit, but not great.
Yesterday and today I'm starting to feel more like myself. I was also taking these drainage remedies my LLMD had put me on (brand is Pekana); I really needed to go off of everything to get any improvement.
I had energy testing done with my former acupuncturist (the arm strength thing). It was interesting. I think I annoyed him because I would always space out (Lyme thing) when I was supposed to be keeping my arm level.
I have to say acupuncture was one of the reasons I started to feel so much better earlier this year, and also I think made my CD57 go up significantly (from 16 to 40!) My new acupuncturist (who I like much better) doesn't seem really into energy testing.
Anyway, the chiro in NYC should be interesting. My allergies/sensitivities are worse than ever, so I'm hardly even taking any supplements now - everything makes me feel sick.
I agree it seems a little "hocus pocus-y", but I just try to remember "Nothing's too wonderful to be true" (Candance Pert)
My LLMD (who has Lyme)and her family and nurse have used the kines. testing with this guy in NYC and had very good results with it.
I'm waiting for my iPod to charge and then I'm going for a nice long walk in the sunshine! - so I must be feeling better...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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hi, i last wrote a few days ago when i was doing very well. well, i have since felt the usual symptoms come back. darn! exhausted, weak, foggy, etc. (this was 1 week after i went off the 50 days of diflucan, and 5 days after i had started the amoxicillin.) so i did what someone recommended in one of their posts: last night i popped another diflucan. and now, 24 hrs later, i'm feeling a tad better. of course and that may or may not be from the diflucan.
anyway, in sum: 50 days of diflucan is not a cure all. (drats!)
but i'll keep doing the protocol (which is 50 days diflucan, then 14 days of penicillin. three rounds of this protocol.)
anyone recall what someone posted once about what causes some folks to get sicker while taking diflucan. it was something you can get tested for, to see if you can tolerate the diflucan. i can't find the post anywhere, but i know i read it once.
rivka
Posts: 17 | From boston | Registered: May 2006
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posted
Don't you think that it's possible that you were just feeling bad from the amoxycillin?
It's also possible that the diflucan has worked on the lyme, and that you have a coinfection that has gone untreated for the whole 50 days. It doesn't make any sense that you were feeling so bad the whole 50 days? You should have felt much better at least for the last two weeks or so. There's gotta be babs or bart in there too.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Next time you finish the diflucan you should give yourself a week off before starting anything else, just to see how you feel. That way you will at least know that feeling bad (if it happens again) is not from the penicillin.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
Just called to Dr J's office and they confirmed the hearing for Sep 28, please spread the word!!!
Posts: 983 | From The sky | Registered: Feb 2005
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posted
I am currently on the Diflucan treatment, because I was on Ketek and sulphur, then dropped sulphur and added 6Grams of amox and got c-diff. I went off all meds and took Diflucan and went on a strict yeast free diet including no carbs.
The first week I was sick as a dog. Think it was herx. Then it gradually started getting better. After 30 days I stopped. (We were not doign the Schardt protocol) Saw LLMD and brain fog was improved. I was off Diflucan for 5 days before I saw doc and felt worse. He started it again and decided to do the Schardt protocol. he is not convinced it works, but willing to give it a try.
My main problems are I am having serious tingling and numbness in my hands and feet. Feel ike I have presure in my spine and some of bones hurt like heck. Feels liek little nodules in my feet and hands too. Glands are swollen big time and sometimes fever. This has gotten worse daily. I am not sure if I am herxing, or I have Bart symptoms worsening. I have never tested POS for Bart and had 3 tests.
I have even visited Dr. E in Jersey and he tested me as well and suspects chronic Lyme. I have tested positive years ago for Babs, was treated and do not have sypmtoms.
I just went for fungal tests panel since Dr. E who specializes in bart wants me to test for fungal disease due to the response I having on Diflucan (he doesn't know the protocol)
He suggests I stay on Diflucan until results come in. I am not so sure that I have an invasive fungal infection, but what the hey, I tried the tests. He has prescribed minocycline to start to see if I have improvement with that since it would help with Lyme and bart.
my LLMD says if my symptoms become too unbearable, that he will put me on a Bart treatment again because he is not totally convinced that I do not have Bart. I have had Avelox and Doxy for 4 months in the past and it helped. He would do mino and Rifampin this time. I have read from some of you that Rifampin is the way to go sometimes with bart. So basically right now, I have two LLMDs and deciding which course to continue on.
So, I am not sure if I am having a worsening of bart or a herx from Lyme.
Nervous about taking amox again though because I got C-diff the first time, but I will be on half the dosage this time.
I take Theralac and VS3, and probiotics all day long and still have some vaginal yeast. Not itchy, just white discharge.
I suspect I am having a combination of problems and that I do have Bart, and it has screwed up my gut.
I'll let you know how I make out.
Posts: 38 | From New York | Registered: Jul 2005
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posted
hmmm. i thought my llmd gave me amoxy because it is a type of penicillin. am i wrong?
Posts: 17 | From boston | Registered: May 2006
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posted
MINIMUS WROTE (RIVKA'S REPLY AT THE BOTTOM): hello to all , i wonder where i can find the latest information coming from drs and patients who use diflucan .. also i ll be very pleased if i can get information if diflucan can be used with flagyl and/or ketek at the same time ..diflucan is said to be weaking the borrelia so it would be a good idea to use bactericidals at the same time when they r weak.. just an idea but my opinion must be be shaped here cause there r no drs in my country who wont put me the blame of hypocondiriasis just after i mention the word lyme .. i ll really apriciate any kind of help..
RIVKA'S REPLY: hi. this is what i did: i did a search in all the medical posts with the words "diflucan" and "fluconazole" and that is how i got all my lastest information. i also have the original article schardt wrote and the interview he gave after that article, clarifying his protocol. i'm happy to send it to anyone who needs it. reach me at [email protected]Posts: 17 | From boston | Registered: May 2006
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posted
Hi all who are curious about the Schardt protocol.
UPDATE FROM RIVKA:
I am in the middle of my 3rd round of the Schard protocol (each round consists of 50 days of diflucan 200 mg, followed by 14 days of a penicillin -- my doc has me on amoxicillin, 3000 mg/day).
This is my report so far:
For the first round, while on the diflucan, i was very sick. Was it a herx or a "normal" relapse, i don't know.
Once off diflucan and on the Amoxy, i did well. Super well. Amazingly well. Lasted 2 weeks. Freaked me out. I haven't felt that well in 17 years.
Then back on the diflucan for round two: i did okay, did a lot more than usual, much more than usual!, but at the same time, even tho i was doing more, i still had all the same usual CFS/Lyme symptoms (exhaustion and brain fog), so i was not *feeling* amazingly well, even as i did more than usual.
Then back on Amoxy: same as what i just wrote above: able to do a lot more than usual, but all my exhaustion and brain fog was still very present. but i DID a lot more out in the world!
Then back on the diflucan for round three, and i'm doing amazingly well again. I have symptom-free hours now. Symptom-free afternoons! Whole afternoons go by without exhaustion or brain fog. AMAZING!
I have started taking an aqua exercise class, and started swimming. this is the first time i have done that in 17 years.
Still to do: I have 1 more month of the diflucan and then 2 weeks of amoxy. Then i will be done with the protocol.
I hear there is a lyme doc in the U.S. who has his patients doing this protocol go on a yeast-free diet. I have not done that. Have you, Paula?
Also, I hear this same doc has patients take a diflucan if symptoms return (2 days before symptoms return, after you gage how long it takes for symptoms to return). Has anyone else heard this?
I have been off this list for a while, if anyone is doing this Schardt protocol, I'd love to hear from them!
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Thanks for the update Rivka. Sounding pretty good for you.
There are two threads posted on this same topic, so it might get a little confusing.... but I hope others on this protocol might post, also.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
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posted
up; rivka, this post and other post should be combined as ONE post; thank you.
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