posted
Greetings fellow Lymies. I have 90% decided to go ahead with my LLMD's recommendations and start the biaxin and flagyl treatment. The 10% doubt is a result of the Flagyl i'm afraid to take. Is there any other alternatives that are less toxic and as effective as flagyl? Any other comments on current, or pre flagyl users?
I"m going on a few day break from meds, I"ll have to find me some of that milk thistle stuff!
Thanks everyone! Posts: 170 | From Vancouver | Registered: Apr 2006
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posted
Yeah, the others have suggested a great idea. I've found that Tindamax works just as well, if not better for the cystic phase of Lyme, and its is a LOT easier to tolerate.
Posts: 559 | From Cary, NC | Registered: May 2006
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bettyg
Unregistered
posted
fyi, I had a MAJOR HERX ON FLAGYL 2-9-06 while I was here on this lyme board.
The wonderful members of this board even went out of their way making sure I was ok. All they knew then was the 1st name and state! Luckily, one former Iowan contacted a current Iowan who knew me and what city I lived. He called our local police dept. to do a home check on me. They did; I was ok by then ... 6-7 hrs. after this occured.
Meanwhile, members here were very worried about me. That shows how much we care about each other on this board! Just my thoughts ok.
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posted
Here is a link to the science that Tindamax, Flagly, and Plaquenil are based.
The susceptibility of mobile and cystic forms of [lyme] Borrelia burgdorferi to tinidazole (TZ) was examined. The minimal bactericidal concentration (MBC) of TZ against the mobile spirochetes was >128 microg/ml at 37 degrees C in micro-oxic atmosphere when incubated for 14 days. TZ significantly reduced the conversion of mobile spirochetes to cystic forms during incubation. The MBC for older (10-months-old) cysts at 37 degrees C in a micro-oxic atmosphere was >0.5 microg/ml, but >0.125 microg/ml for young (1-day-old) cysts. Acridine orange staining, dark-field microscopy and transmission electron microscopy revealed that, when the concentration of TZ was > or = MBC, the contents of the cysts were partly degraded, core structures did not develop inside the young cysts, and the amount of RNA in these cysts decreased significantly. When cysts were exposed to TZ, both the spirochetal structures and core structures inside the cysts dissolved, and the production of blebs was significantly reduced. These observations may be valuable in the treatment of resistant infections caused by B. burgdorferi, and suggest that a combination of TZ and a macrolide antibiotic could eradicate both cystic and mobile forms of B. burgdorferi. [Lyme].
Brorson O, Brorson SH. An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to tinidazole. Int Microbiol. 2004;7:139-42.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to metronidazole.
Brorson O, Brorson SH.
Department of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway.
The aim of this study was to examine the susceptibility of mobile and cystic forms of Borrelia burgdorferi to metronidazole. Because B. burgdorferi is a microaerobic bacterium like Helicobacter pylori, metronidazole (MZ) was chosen in the susceptibility test. For both microaerobic and aerobic incubation the normal mobile spirochetes were resistant to this antibiotic with an MBC > or = 512 microg/ml. Conversion of mobile spirochetes to cystic forms was not observed when they were incubated with MZ. When they were incubated under microaerobic conditions, the biologically active cystic forms had an MBC > or = 4 microg/ml, but the MBC was > or = 32 microg/ml with aerobic incubation at 37 degrees C. Staining with acridine orange (AO), dark field microscopy (DFM), and transmission electron microscopy (TEM) revealed that the contents of the cysts were degraded when the concentration of MZ was > or = MBC. Some cysts were also ruptured. When incubated with a sufficient concentration of MZ, core structures did not develop inside the cysts, and AO revealed less RNA in the cysts. Our observations may help efforts to treat resistant infections caused by B. burgdorferi with a combination of MZ and other antibiotics in order to eradicate both cystic and mobile forms of B. burgdorferi.
PMID: 10379684 [PubMed - indexed for MEDLINE]
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Int Microbiol. 2002 Mar;5(1):25-31. Related Articles, Links
An in vitro study of the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine.
Brorson O, Brorson SH.
Department of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway.
In this work the susceptibility of mobile and cystic forms of Borrelia burgdorferi to hydroxychloroquine (HCQ) was studied. The minimal bactericidal concentration (MBC) of HCQ against the mobile spirochetes was > 32 microg/ml at 37 degrees C, and > 128 microg/ml at 30 degrees C. Incubation with HCQ significantly reduced the conversion of mobile spirochetes to cystic forms. When incubated at 37 degrees C, the MBC for young biologically active cysts (1-day old) was > 8 microg/ml, but it was > 32 microg/ml for old cysts (1-week old). Acridine orange staining, dark-field microscopy and transmission electron microscopy revealed that the contents of the cysts were partly degraded when the concentration of HCQ was > or = MBC. At high concentrations of HCQ (256 microg/ml) about 95% of the cysts were ruptured. When the concentration of HCQ was > or = MBC, core structures did not develop inside the cysts, and the amount of RNA in these cysts decreased significantly. Spirochetal structures inside the cysts dissolved in the presence of high concentrations of HCQ. When the concentration of HCQ was > or = MBC, the core structures inside the cysts were eliminated. These observations may be valuable in the treatment of resistant infections caused by B. burgdorferi, and suggest that a combination of HCQ and a macrolide antibiotic could eradicate both cystic and mobile forms of B. burgdorferi.
PMID: 12102233 [PubMed - indexed for MEDLINE
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Now that you've read the science, notice how many times more powerful Tindazadole is than the other medications. Tindamax has a MBC between .1 to .5
Flagly is no where close to that low of an MBC for the cystic form of Lyme. Neither is Plaquenil.
But, as with all things, discuss this with your doctor. Goodluck, and live strong.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Here is one more option -- not that I would recommend it based on hubby's experiences. Oral pepto bismol is probably ok, but IV is probably too dangerous and oral pepto bismol combined with IV calcium EDTA is what hubby had a problem with.
Find it strange that all 4 of these pubmed articles are by the same authors. Is noone else researching the cystic form?
Have read that the herb Goldenseal may be effective on the cystic form, but do not believe there are any research studies to support this.
Bea Seibert
---------------------------------------------
1: Int Microbiol. 2001 Dec;4(4):209-15. Related Articles, Links
Susceptibility of motile and cystic forms of Borrelia burgdorferi to ranitidine bismuth citrate.
Brorson O, Brorson SH.
Department of Microbiology, Vestfold Sentralsykehus, Tonsberg, Norway.
Gastrointestinal symptoms accompanying Lyme disease have not been considered in the treatment of Lyme patients yet. Here we examine the effect of ranitidine bismuth citrate (RBC) on motile and cystic forms of Borrelia burgdorferi in vitro, to determine whether it could cure this bacterial infection in the gastrointestinal tract.
When motile forms of B. burgdorferi were exposed to RBC for 1 week at 37 degrees C, the minimal bactericidal concentration (MBC) was > 64 mg/ml. At 30 degrees C, the MBC was > 256 mg/ml. When the incubation lasted for 2 weeks at 37 degrees C, the MBC dropped to > 2 mg/ml. Bismuth aggregates were present on the surface of B. burgdorferi when RBC > or = MBC, as shown by transmission electron microscopy (TEM).
Cystic forms of B. burgdorferi, exposed to RBC for 2 weeks at 37 degrees C, were examined by cultivation in BSK-H medium (Sigma B3528). They were stained with acridine orange (pH 6.4, pH 7.4) and studied by TEM. The MBC for RBC for young cystic forms (1 day old) and old cysts (8 months old) was estimated to be > 0.125 mg/ml and > 2 mg/ml, respectively. Bismuth aggregates were attached to the cysts and, in some, the pin-shaped aggregates penetrated the cyst wall. The bismuth aggregates also bound strongly to blebs and granules of B. burgdorferi when RBC > or = MBC.
When B. burgdorferi is responsible for gastrointestinal symptoms, bismuth compounds may be candidates for eradication of the bacterium from the gastrointestinal tract.
PMID: 12051564 [PubMed - indexed for MEDLINE]
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
No, practically no one else is doing that kind of research.
I think I read somewhere that one of the brothers came down with a very bad case of Lyme, and that's why they got so interested, as they had already been scientists.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Thanks LymeScience,the research data you suply is invaluable to our "Test Group" efforts.
I think we can beat these "buggers" without special-interest bureaucracys and know that whatever type of "battle"...its the hearts and minds of individuals that decide its coarse. Alan
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
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posted
Wow thanks for the replies guys. My sluggish brain could not compute the articles you posted LYMESCIENCE, but you say that they showed tinidazole is just as effective as flagyl?
Is there anybody out there that has had success with a tinidazole combo?? Success = full recovery I think it would make sense to start with tinidizole and biaxin and then up the antee with Flagyl to finish off my treatment.
Any comments? Posts: 170 | From Vancouver | Registered: Apr 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I took flagyl for almost a year and had little adverse side effect. Then a different doc increased my dosage and pulsed it. After two pulses, I started having severe adverse reactions but did not recognize what it was. I pulsed one more time, and now I am left with persistent neurological damage that is devastating me. Neuropathy and sexual dysfunction. And noting makes it better. It has been two months since the worst of it started. Now I am taking almost no antibiotics trying to recover, and hold onto the progress I have made in four years of treatment. ' Please be careful with flagyl and listen to your body. If it feels wrong, it might be!
Posts: 1032 | From North Carolina | Registered: Aug 2003
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posted
It just beats the heck out of me how people can be presented with so much evidence, and still come out with the same preconcieved notion that Flagyl is somehow better than Tini. Tini works way better than Flagyl and without the terrible side effects. Flagyl is a first generation antiprotozoal med. Tini is 2nd generation. Here's a post from a girl that took 1000 mg bid of Tini in combo with other drugs non stop for 2 years. She has been off all abx for over a year and doing fine.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
The difference in the studies that have been done on these two drugs is that Flagyl has been studied in VIVO (in real people) and Tini has only been studies in Vitro (in a petri dish).
I'd go with tini, and blaze your own VIVO!!!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Flagyl i a very old drug. It has been around for long long time and is used world wide. It is tough to take for some people but for the vast majority it is not a problem. I had it for a long time. The worst thing it did was leave a bad taste in the mouth.
Flagyl and others like it (tini...) are interesting in that they have a very good brain penetration, as good or better than all of the other drugs used to treat Lyme.
I question the cyst aspect of Flagyl. It does not open the cystic form, it prevents cysts from occuring. This is something that many people overlook. Once the organism is in cyst form it stays there until a favorable enviroment appears, however there is evidence that the longer it stays in cyst form, the weaker it is when it comes out. The organism eneters cysts form , presumably whne antobiotics appear... this is usually BEFORE flagyl is used. Under favourable conditions it takes many days for the organism to exit the cyst form but only a few minutes for it to enter the cyst form. Despite this apparent contradiction, the stuff still works.
It is for that reason I question if the cyst properties are responsible for the improvement seen with flagyl. My personal opinion is that it is the very good CNS penetration that flagyl has thay accounts for it efficacy.
In summary, from past experience I would have no hesitation on using it again. As far as a negative reactions some have had with it, I think that it may have a lot to do with the drugs already taken. I had a course of ceftriaxone which also has a very good brain penetration and the subsequent reaction to flaygl was very mild as compared to reports that I have read on lymenet. On the other other hand, the intial reaction to ceftriaxone was EXTREMELY hellish to put it mildly, still i survived it with only bennificial results.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
David, your assumption regarding Flagly is incorrect because it assumes only half of the real answer.
MBC stands for minimum bactericidal concentration, which in lamens terms refers to the minimum amount of a substace required to kill (usually 90%) of the bacteria under investigation.
You are correct in your assumption that it will help prevent cysts from forming, but you are incorrect in saying that it does not kill the cyst.
The key to the cyst, other than its somewhat protective nature for the spirochete in the form of the cyst attaching to an antibody so that it won't attack the spirochete, is that its a kind of egg that which later spirochetes will "hatch"
Tindamax, while in most cases not rupturing the cyst itself, does infact kill the main purpose of the cyst, which is to cause relapse. Tindamax destroys the RNA within the cyst rendering the egg something akin to a miscarriage.
In this manner, it most likely doesn't do anymore harm, and the scientist who have studied this phenomina found that once the genetic material within this egg was dead, there was no longer any metabolic activity present.
Also, in reference to the differences between in vivo, and in vitro concerning Tinda and Flagly. Though it is possible, I have serious doubts that Tinda would work wildly different in vivo. Its mechanism of action on the cyst is in the same manner as Flagly, except that it is several orders of magnititude more powerfull. For example, for old cysts, the MBC of Flagly = 32 whereas for Tindamax, the MBC for 10 day old cysts =.5
This is highly significant because, the lower the number, the more potent the drug.
Hope this helps.
Posts: 559 | From Cary, NC | Registered: May 2006
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-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Lymescience... just a couple of thoughts From my recollection of the publications (they are a few years out of date) the only claim made by the authors was that cyst formation was inhibited. A far As I know (and again I may be out of date), once in the cyst form the diffusion time through the wall was extremely long and that for all practical purposes was impervious to larger molecules. i forget what the wall was made of but I think it was some sort of long chain hydrocarbon with no protien like properties witht he result that antobodies would not recognize it (which is odd). One fellow trained in india told me that he was taught that the spirocete only go into cyst form in the CSF since in the blood they would be detected rather quickly as they would be extracellular. I think all the cyst forms that have been studied thus far are made via the DI water method that was published soe years back.
Also I seem to remember that the organism does not always replicate while in cyst form but instead can remain dormant for quite some time. In that case a RNA inhibitor would have no effect. Also, the electron micrographs that I have seen of the replication process seem to show replication as a fission process rather then the interior of the cyst acting as cell nucelous, which would mean that the drug woudl have to pass through both the outer cyst and the organism membrane, with the cyst theorectically being the more difficult to penetrate.
Given all of this (maybe out dated info) I would think that the MBC needed to effect a inhibition of RNA binding inside the cyst woudl have to be much higher than for motile or at least entrenched form of the organim. So much so that one would expect that mono agent treatment with flagyl should be a sufficient, something that has been disproven in practice... I think.
Not trying to get into an argument, just trying to make sense of the most up to date info and figure out what really is happening.
Any thoughts?
Posts: 1184 | From north america | Registered: Feb 2003
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bettyg
Unregistered
posted
neuro science,
would you please edit/pencil icon your 3 posts on publications and BREAK THEM UP please?
They are so technical, we neuro lymies can't begin to read let more comprehend.
How about each sentence being one sentence and double spacing between paragraph. Noticed at least one other person commented she could not read as is.
A reminder to all, please hit enter more often and double space between each paragraph. Thank you for your consideration of the many on here with neuro lyme who just can not read long, continuous paragraphs and NO double spacing. end of subject.....peace
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What I've learned here is that more research needs to be done, but that good research has been started.
If we can only hold out long enough this rotten disease will be figured out.
those of you with the research background, thanks for interpreting it for those of us who are just learning.
Posts: 132 | From SE Pa | Registered: May 2006
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No my friend, I don't take this as argumentative. You have addressed some incredibly interesting ideas. I must confess that my knowledge of cystic structures from spirochetes as it pertains to borrelia is mostly from new research.
As the new should be based upon the old. I now must go back and do some research before I can properly answer your question.
If I only rely upon what I know now, then I can't accuratly access the scientific validity of your points.
Great post. This might take me some time to respond, but you seem like one who deserves an excellent response.
Posts: 559 | From Cary, NC | Registered: May 2006
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