posted
I never heard the cyst form was asymptomatic. It sure isn't when you take cyst busters.
I wouldn't want my body full of locked up cysts.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
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posted
It is my understanding that the only way to keep lyme in the cyst form is to continually stay on antibiotics that cause lyme to go into the cyst form.
In less than a week after meds are stopped, the lyme comes out of the cyst form and makes you as sick as you ever were at the start of your lyme treatment.
That is because evidently the lyme multiplies within the cysts. I experienced this twice when a lousy lyme doc told me to stop meds. I was back at the worst sickness I ever had within 2 weeks--mentally and physically.
My next lyme doc said that my 2 years of amoxicillin treatment turned all my lyme into the cyst form. I was not symptom-free due to this treatment, but I was better than when I started treatment.
But, any time I stopped the amoxi, I was back at square one! It was awful.
So, the cysts have to be treated if you are ever to get well.
From p. 13 of Burrascano:
"CYSTIC FORM- When present in a hostile environment, such as growth medium lacking some nutrients, spinal fluid, or serum with certain antibiotics added, Bb can change from the spiral form (�spirochete�) into a cyst form. This cyst seems to be able to remain dormant, but when placed into an environment more favorable to its growth, Bb can revert into the spirochete form. The antibiotics commonly used for Lyme do not kill the cystic form of Bb. However, there is laboratory evidence that metronidazole and tinidazole will disrupt it. Therefore, the chronically infected patient who has resistant disease may need to have metronidazole (or tinidazole) added to the regimen. More details are provided in the section on treatment options."
lpkayak
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tf-i agree with some of what you said but not all. (im not disagreeing with you but with what the docs told you)
i know Bb multiplies when in the cyst form cuz i saw it do that in a slide at a conference
i have been trying to find if anyone knows HOW LONG Bb will stay in cyst say for doxy or for amox
llmds i have known pulse differently-but i think it is all experiments at this point
once i was told it is much better to take 400mg doxy every 24 hrs than 200 every 12 hrs. one reason may be to get high levels to cross blood brain barrier but i also wonder if waiting 24 hrs give the cysts enought time to open again when the 12 hrs wouldnt
i know it doesent always have to be a week cuz i got a lot better pulsing for a yr by taking abx fri-sat-sun and then off mon-thurs.
if anyone knows how long doxy or amox or anything else will keep Bb in cyst form plz let me know-thanks
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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if anyone know how long doxy or amox or anything else will keep Bb in cyst form plz let me know-thanks
- Why would you want to know, kayak? I don't understand.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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TF
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posted
kayak, when Burrascano is discussing doxy, he says the following:
"Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen." (p. 14)
I believe this quote is the source for the info you were given regarding taking a higher dose of doxy every 24 hours as opposed to a lesser dose of doxy every 12 hours.
Each med is different. Some require a sustained level in the blood to work, and others like doxy require high spikes to work.
This has nothing to do with getting lyme out of the cyst form.
In my experience, 24 hours is not enough time to get lyme out of the cyst form. If you check the half life of whatever med you are interested in, you will get an idea of how long it remains in the body. The lyme is sensing whether or not the antibiotic is still present, per Burrascano. The antibiotic is still going to be present for a number of hours after the last dose is taken. In some cases, it will still be present days after it is taken.
The well-known lyme doc who cured me had me stop all meds for 1 week. Then, he started my lyme treatment using amoxi and flagyl--one med that kills lyme in the spirochete form and one that kills it in the cyst form. This way, there would be no way for the lyme to hide. The 1 week was to begin to get the lyme out of the cyst form in preparation for the ambush of meds.
I did not get sick in that 1 week period at all. Not at all. So, I believe that 24 hours is certainly not long enough for lyme to venture out of the cyst form. But, this is all based on my experience and the things my lyme doctor told me.
A quick glance at an internet search says that the half life of doxy is 18-22 hours. So, that means about 20 hours after you take a dose of doxy, half of it is still in your body. In another 20 hours, half of that half (or 1/4) is still in your body. That is how the computation is done.
As I understand it, the idea behind pulsing is not to get lyme out of the cyst form (and there is no cyst form for babs and bart--yet pulsing works for them also). Instead, pulsing is a way of getting higher doses of meds into the body and thus having that very effective "spike" in blood level, without stressing out the liver and kidneys, etc. The days off allow the body to detoxify and also allow the immune system to "get a peek at the germs" as one famous lyme doctor likes to say.
So, you can pulse meds and still be killing germs. That is all due to the half-life principle mentioned above.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
Here, Burrascano discusses pulsing IV Rocephin and he discusses why the pulsing is an advantage--easier on the liver and intestines. Notice no mention of getting lyme out of the cyst form.
"One successful approach in the more ill patient, published in the early 1990s, is to use higher doses of ceftriaxone in a pulsed-dose regimen. Since then, clinical experience has expanded upon this concept, and at the MLDA Lyme Congress in September, 2002, Dr. C. presented data on a pulsed, high dose regimen which supports and refines this concept. This regimen is now considered the current standard of care in the use of ceftriaxone.
Treatment with ceftriaxone is dosed at 4 grams daily- given either as 2 grams IV twice daily, or 4 grams slowly once a day, four days in a row each week, usually for 14 or more weeks. Such a regimen is not only more effective in the Chronic Lyme patient, but regular interruptions in treatment lessen the potential complications of intensive antibiotic therapy with ceftriaxone, such as biliary sludging and colitis. Hence a more effective, safer regimen that by virtue of the treatment breaks, is less costly and affords the patient a more acceptable lifestyle. IV access with a heparin lock becomes possible (and preferred)." (p. 16)
posted
Because some Bb is in the cyst form doesn't mean that all Bb are.
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Keebler
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- I forget which, either (or it may be both) cysts and biofilm colonies that are affected by cyst busters, too . . . when "opened" more spirochetes are set loose, so to speak.
Besides spirochetes & the cyst form, there's the cell-wall-deficient form to also consider - and some researchers think there are other forms beyond those. Borrelia is brilliant at morphing. -
[ 03-07-2012, 12:22 PM: Message edited by: Keebler ]
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nefferdun
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Are you guys sure that Bb can replicate in the cyst form? It is DORMANT. I thought that Bb takes a couple of weeks to take off again when you quit meds. That is one way of telling what you are dealing with because bart and babs is much quicker to become active.
I quit zithro in June and did not get Bb symptoms back until October. My CD57 at that time was 37.
Lately, I am so up in the air about how to treat, having gotten no prescriptions from the last LLMD. So when my lower legs ache I take doxy. They get better in a day. I quit and a couple of days later it begins again.
TF, how did you pulse the amoxi and flagyl?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote: Based on visualization of 32 round bodies formed by WT-gfp and ΔrpoS-gfp Bb (16 per isolate) in RPMI, we found that each recovered into a single spirochete (Video S1).
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susank
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posted
We are told to be off Abx approx 2 weeks prior to antibody testing. I always wondered about that time frame.
My brain is fried - but I don't recall the "challenge" Abx being cyst busters.
I wonder why my Advanced Lab. culture test took ten weeks to show growth. Why some cultures turn positive in two weeks.
I would think that dormant means not re-producing while in cyst form. I think this needs to be clarified.
Where do the cysts cluster? In the brain? Joint tissue?
This chasing Bb back and forth between spirochete and cyst form with Abx - appears to be a losing battle. There has got to be a better way. Like cancer cells and radiation.
I had thought that pulsing served multiple purposes - including tricking the bug into thinking all is clear - go back into the blood and replicate - only to be hit with Abx.
Odd that Dr B did not mention that in regards to Rocephin. A drug foremost known for pushing the 'chetes into cyst form. And known for the "Rocephin Relapse". Pulsed or not?
Who is really cured of Lyme Disease? If no cure then we have to settle for just feeling better - and hope to stop disease progression.
The max I have taken an Abx is six weeks. I don't recall feeling anything/any different - better or worse on or off. Perhaps not long enough to know anything. Ceftin - I don't recall anything. Zith caused ear ringing. I have not taken Doxy at a high dose. I think Doxy gives me trouble - but not sure about that.
I did two Rocephin injections in the ER. I felt it calmed down many things in my body and I felt less pain. Two 1g Roc. infusions could do that? Would it have killed any spirochetes or pushed a significant amount into cyst form? That low dose and approx 24 hr. time frame?
I know I want to try it - Roc. - again. If I felt better - and hypothetically knew I had only a few more years to live - I think I would opt to stay on a cyst-forming Abx - and call it good. Enough already
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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lpkayak
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posted
neff...i saw the slide. it was from alan macdonald. i talked to him about it.
but i am not a scientist and all that stuff could be faked i guess...but i like him and trust him and am so sad about what happened to him and i dont see why he wouldnt tell the truth
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
ok-re read all of above. a lot i knew. i appreciate the walk thru of half life. and the info about "spike"-that is exactly what i needed to know.
one thing i know is that zith stays in your system a long time...you normally take it (for strep say) for 5 days and you are covered for 5 more days. regular docs know this. common knowledge.
when a good (real-whatever) llmd pulses he would switch zith to biaxin...cuz biaxin has much shorter half life. mine did that and my llmd is one of the very best original ones.
however---i have seen it on here when other llmds have ppl pulse with zith. im not sure what they are doing...but it would not work to do that to do what my llmd wanted:
take the meds...kill as many Bb as you can before it goes to cyst...stop the med...let the Bb come out again and then take the med and kill some more
now-as far as multiplying in cyst...the film i saw showed Bb going into cyst form...ONE goes in but when the cyst opens TWO OR THREE OR MORE come out! very impressive to see it. so yes-i am saying what i saw and was told what was happening by dr macdonald was they were multiplying while in cyst
maybe the definition of cyst shoult not be "dormant"
ummmmm-basically...my info comes from 30 yrs of dealing with this-going to conferenes-talking to and working with a number of high level llmds and just living the experience in many ways with myself and my family members---all who had a different experience
BUT...as you all know...i am very fogggy at times. to me it seems when i remember i really do remember...but often i know the info is in my brain but i cant get it out
and...in my experience i have found as we get more llmds...or docs who say they are...it gets very confusing. i dont know where they come up with some of the stuff they do. i'm used to very experienced llmds who know they dont know all the answers but use their experince to help us. part of that is knowing when NOT to jump on the bandwagon of some NEW TX
its complicated i know. but it would take a lot of science to prove to me my pulsing for that year did not make me much better
as always-what is read on here needs to be taken carefully...we all mean well...but it is a very complicated bug. posting research helps...but some research is good and some is awful...the results they come up with are onlyas good as the study itself was
im tired...my hands hurt. but thank you for answerint my questions
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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TF
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posted
nefferdun, I did NOT pulse the amoxi and flagyl. I took them both every day.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Razzle
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posted
I thought flagyl & tindamax were also anti-spirochetal in addition to anti-cyst?
So wouldn't flagyl or tindamax alone taken long-term be sufficient (I know about the cancer risk with these meds, but there are ways of compensating for that, too)?
Or do flagyl/tindamax not kill the cell wall deficient version?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
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