You can show all the pictures of cysts you want,I have shown some too.But what you have not shown is a picture of a cyst that came from an antibiotic treated mouse, and then shown it has been reverted back into a viable infectious spirochete.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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posted
I think we all just need to find an LLMD that we trust and put our stock in their knowledge. The fact is that nobody knows the answer to this question for sure, but if flagyl is helping and there is a viable theory behind it......then why not go with it?
I am a researcher who cannot currently do research because of the neuro/brain symptoms. So I have not clicked on any of the above links. I find all the theories to be incredibly confusing with such incredible brain fog. Therefore, I will leave the debates to those whose brains are clear enough to comprehend the research.
I don't think we will reach full agreement on this or any topic in this forum. If we knew all the answers definitively there would be no need for this forum, we would just go to a doctor who would diagnose and treat us based on those definitive answers.
But...we are not there yet. So I will look for answers from a trusted doctor who has dedicated their career to finding plausible answers and treating me on what they currently know to be as close to the truth as we can get at this moment.
Good luck to all.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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canefan17
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posted
Flagyl still working for me. When I start it up I get a day or 2 of bad headaches and fatigue and by day 3 or 4 I feel really good.
Rinse repeat.
New fav drug lol
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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sparkle7
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posted
Maybe the flagyl is hitting some bacteria other than Lyme? It's pretty broad spectum from my understanding.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I also have such brain fog and short attention span with lyme so it's hard for me to read a lot of the studies...hard to concentrate on so much info, just speaking for myself. It's good to know flagyl may hit parasites too. My doc wants me on it for 60 days like TF. He feels it's a risk to pulse because some of the broken cysts may be missed (I think that's how he explained it??) I'd much rather pulse. He said we'll do that if we have to. Is the theory behind pulsing that the cysts come out, get zapped by other abx, then stop the flagyl, start again and zap them again? I'm only at 1/4 3Xday now of 250 mg and need to work up to 1500 mg a day!!
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
Oops, didn't realize I couldn't post my dosage publicly TF until I reread this thread.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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Lymeorsomething
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posted
Yeah, Flagyl is one of the big guns for lyme and a good pulser to run with Amoxy.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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canefan17
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posted
Beachit,
I agree with Dr B on Bartonella. That's been my experience.
Does Dr B think Flagyl can hit Bart?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
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posted
My guess is that Beachit is referring to Burrascano's Guidelines where he says the following regarding bartonella:
"Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early. (page 26)
Also did you know that Burrascano mentions using flagyl in babs treatment? Yep. Page 24:
"Metronidazole or Bactrim can also be added to increase efficacy, but there is minimal clinical data on how much more effective this will be."
Posts: 9931 | From Maryland | Registered: Dec 2007
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canefan17
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posted
Someone mentioned that flagyl can hit Babs to me.
I think that's def possible as flagyl has, in some ways, brought on some babesia symptoms/flares/herxes.
Thanks TF
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sparkle7
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posted
From what I recall - Flagyl is a serious drug with serious side effects. If we don't know what it's doing exactly, I don't know if I'd want to risk taking it for an extended period of time. That's just my opinion.
Do we actually know for sure what we are hitting, what pathogens we have & if it really works? I don't know... I know we all want to get well but I don't know if we should take all this stuff for extended periods of time without knowing for sure what it is or will be doing.
We may end up worse from side effects & still have the pathogens that are making us ill. Are there any statistics about whether this is actually working? Most of us do not know 100% what we are even treating...
Just my thoughts. I don't mean to ruffle any feathers out there. If there are studies & statistics that this drug is helping - please post them. I'd like to learn.
posted
Canefan, I was taking flagyl and doxycycline and when I paused it after 6 weeks or so the pain on soles of the feet returned, so I restarted the above meds and within 2-3 days the sole pain resolved. So that was my own experience that the flagyl likely has some effect on Bartonella (not listed for this in Dr B's guide though) and does not cure the Bartonella, only temporary pause in the symptoms.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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canefan17
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posted
ok thanks
And sparkle... I generally have one common rule of thumb in my treatment and that's... if something makes me feel better then it's doing something positive for me and my immune system.
Flagyl has given me dramatic results already (1 month in)
I don't take it everyday because yes it can be tough on liver.... but that's why I'm monitoring liver enzymes.
But really... what abxs don't pose some sort of risk (especially gut/liver)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- While many Rx can have profound side effects, some "reported side effects" of certain antimicrobials could be a herxheimer reaction for those who may have undiagnosed stealth infections.
Also, if liver support and protection are not in place, the liver can be damaged by many of the Rx on the market.
And, for those still (rightfully) cautious of any Rx as one learns more, there's always the question: how else, then, to achieve the desired result? GSE is one other option to consider.
With certain precautions, the side effects of some Rx can be far less dangerous than under-treated lyme.
canefan,
[I know you know all this but posting for anyone new to all this.]
IMO (and that of many LLMDs) everyone on lyme treatment needs to have some kind of support plan for liver & kidneys:
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
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Yes, I agree. I don't really care what people take if it helps - drug, herbs, supplements, whatever... I agree with "if something helps then it's good".
It's just that flagyl is some strong stuff. I hope this works out for you cane but lets see what happens 6 months - 1 year from now to judge if it was a good thing in the long run.
Wasn't there some story back in the 60's about someone who was mentally disabled. He got some kind of miracle drug which reversed it & he became like a genius - then, over time it failed & he was back where he was. Sad, sad story... I think it was "Flowers for Algernon" or something.
I don't mean to be seeding doubt but lets give it some time & see where it goes. I'm glad it's helping.
It took about 9 months but Parastroy did help me feel almost normal again. I stopped taking it & I'm ill again. I'm waiting for more to come in the mail. I tried some of the horse meds but they didn't seem to do the trick & they were too harsh.
The herbs seem better to me since this seems to be a long term project, unfortunately. I don't know if it's in our best interest to stop & start the axb over time. It may just make the pathogens more virulent.
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Rumigirl
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posted
canefan, it's good that the flagyl is helping you!
I was just rx'd it; it's the first time I've been rx'd a cyst-buster. I'll be pulsing it, also, via IV. I expect that there will be some rough patches with herxing. But I am willing to go through that in service to getting well.
Keep us posted on your progress.
Posts: 3792 | From around | Registered: Mar 2008
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posted
Who is talking about not treating Lyme.If you want to use it to kill parasites,I have no problem with that.But if you want to use it as a cystbuster,then you might want to think about it a little more.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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sparkle7
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I'm not sure but I think the point that nnecker is trying to make is that none of this stuff is proven. I think it really goes back to testing. If we don't have accurate tests, we really don't know for sure what exactly is making us ill to begin with.
Could be Lyme, babs, bart, viruses, parasites, retroviruses, toxins, allergies, etc...? or any combination/synergy or all of this mess.
I don't believe that the doctors know, either. I know some of them are trying to help & not all are money-grabbers... but they don't know for sure. So, we have to be very careful about what we are being prescribed.
We don't want to end up worse - still ill & with some heinous side effects... So, we have to be informed & careful. I do believe that Lyme & some of our other pathogens are pleomorphic. What actually will kill it - I don't know.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Keebler
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posted
- There is good detail in the many links here.
posted
sparkle,you can be sure now,that is the point I am trying to make.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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canefan17
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posted
Not sure why you guys are emphasizing the negatives (cancer risk? psht - show me)
And like someone else mentioned... the state I was in was much more acidic/cancerous than without good treatment (such as flagyl in my case)
There is an absolute risk to all this treatment. But the risk from Lyme/Cos for me was MUCH more harmful. In fact it was killing me.
I was hospitalized with encephalitis numerous times. Lost 20 lbs of weight. Neuro-degenrative symptoms.
I'll take some drug side effects vs the continuation of that.
And I've done all the natural treatments in the world. I think I have a severe case stemming from childhood (congenital Lyme).
And no offense sparkle, but you've said you've used horse medicine (Ivermectin) in the past. I would imagine this is more dangerous and less controlled/studied than flagyl (commonly used abx)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
And Keebler since you have posted the same stuff about five times now,I guess I will say this for the fifth time.
Not in any of those links does it show an antibiotic created cyst inside living tissue that was shown to be converted back into a viable spirochete.
And that's what this argument is about.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Keebler
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posted
- The other researchers' works need to be read, though, to grasp the importance of the cyst form.
The Yale study is lacking in some respects, IMO. It can't possibly be the end-all be-all, simply due to the methods of testing and conclusions that don't consider all that previous researchers have learned about the cyst form.
Yes, there is more to learn but that one study is not considering all the aspects. Can we learn from it? Sure. But it would be to our peril to stop there.
It's just one look, under one set of circumstances. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler,you suggest to people to take Flagyl and Tindamax.The burden of proof is on you.
You have zero studies that show Flagyl and Tindamax kill cysts in living tissue,zero.
And you talk about it can't possibly be the end-all be all.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Keebler
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posted
- The burden of proof is on me? Oh, thanks. You won't even read the articles that explain why I post what I do.
If you would read those, it might help you understand why I, and others here, always tell folks to find the best ILADS educated doctor with whom to discuss this matters.
You demand that we disprove the cyst form matters at all. The effects of Bb's cystic form cannot be denied nor wished away.
Is treatment for all forms of Bb fabulous? No.
Do we have much to learn? Sure.
We are here to help others. We provide lots of links where they can read more and always - always - suggest they find the best educated LLMD possible.
I am not out to prove anything other than that education must be broad based to survive having lyme. Not out to prove anything other than the importance of finding the best educated doctors possible.
And, since that's not possible for many, I try - try - to offer a broad range of important articles from many different researchers.
As most will agree with a sign, I usually post too much to consider. But everyone with lyme has to go way beyond what we find here on this
discussion board. We are just other patients here, hoping what we found to help us better understand will also help others.
There's a lot to consider. And we cannot ignore the fact that the cyst form is a huge consideration. Our LLMDs are the best to guide us with ways to work with that.
The burden of proof is on everyone to learn more from ALL the best in the field to consider all aspects. -
[ 09-12-2012, 05:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
No, the truth is the other side of Lyme, and it is still being sought.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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sparkle7
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posted
Canefan - I didn't take the horse meds for a month non-stop. I just took it a few times over a period of a few months. I've tried the abx but they made me worse than the "Lyme" or whatever has been making me ill.
I didn't want to risk having a serious side effect in addition to whatever was making me ill. I've seen it happen a number of times with people here. They threw caution to the wind & listened to their doctor & took high doses of abx. They didn't get better & ended up worse. It's just experience...
If it helps you - great. Why question it here? I thought you might want to hear the other side of the issue. Maybe someone here will post & say it's been helping them by taking it for a long term? I hope so...
No offense. I just have found drugs to be damaging over time. If we have to treat long term - the herbs may be better. I know that not all herbs work but sometimes the pathogens get resistant to the drugs. It does happen - then what? It's a slippery slope.
Try it & see where it takes you. I hope it works.
I don't know anything about the cyst in tissue vs. blood issue. I know there are many forms that the Bb take... blebs, cysts, l-form, spirokeets. What a pathogen!
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sparkle7
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posted
PS - I found that the horse meds didn't help as much as the Parastroy - so, I don't know... I would have taken the human meds if my doctor had a clue about how to prescribe them properly.
I feel it good to be cautious when you take something that effects the biome. They are just studying about this now. Its an important consideration.
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sparkle7
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posted
Another thought (I went for a walk & I was thinking about this issue)... re: I was hospitalized with encephalitis numerous times.
I'm sorry about this, canefan. Do you know why this happened? Was it viral or another cause?
I never pushed the idea that flagyl can cause cancer. Serious study is going on regarding the human biome. This issue is more in the front of my mind than casues of cancer (which are numerous). I think the biome is connected to the immune system. If you alter it, it may decrease immunity in the long run.
This is what makes me nervous about long term or large quantities of abx - especially if we don't know the exact cause of our illness.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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Maybe it's hitting babesia? It's supposed to be anti-protozoal. There are risks, though.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To help mitigate some risks of any Rx protocol, some things here may be of help:
LIVER SUPPORT & and several HERXHEIMER support links, too.
Some KIDNEY support detail, and
LL ND (naturopathic) link here, too. LL NDs know much about protection during RX treatment. They also know how to ask: how else?
ANTIOXIDANTS in our food and key supplements are also players we really want on our team.
NINE CUPS OF COLORFUL VEGGIES A DAY can do wonders for supporting one's body against all matters of harshness (� la Terry Wahls, MD) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
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Why do you need Flagyl or Tindamax? The conventional wisdom is that treatment needs to address all three forms of the bacteria.
After all, the spirochete morphs into L-forms and cyst forms; if these different morphologies are not targeted the disease cannot be "cured." Otherwise, the bacteria cannot be eradicated. The cysts after all, become be a reservoir of disease waiting for the right conditions, to become active spirochetes. The science, the bacteriology, the immunology tells us something different.
The body cannot be sterilized of Lyme or Bb bacteria. The intracellular niche is too protected. The immune response to intracellular bacteria is not far reaching enough. Despite clinical remission, Bb will forever persist within our cells and tissues. Many patients who are in a clinically remission relapse significantly when "cyts busting" drugs are added.
The immune system becomes activated; inflammatory cytokines are produced and the symptoms return. The patient "Herxes" all over again. Frequently cognitive dysfunction worsens, joint pain and fatigue return as well as other symptoms. And to what end?
Yes- Cystic and granular forms of Bb have been demonstrated in the brain. In some cases the addition of Flagyl can lead to cognitive improvement. I don't think this is usually the case. Many cyst and granular forms have found under biofilms. My suspicion is that biofilms are not a cause for alarm.
At any rate, there is no way to reach or kill such germs. By far, the biggest source of foreign bacteria is found in our oral cavities. These bacteria contained within biofilms generally cause us no adverse health consequences.
It is only when the biolfims become broken down by active infection that these previously walled of colonies of bacteria become problematic. Sometimes- anti-cyst therapy seems to improve mental clarity. If cognitive issues persist, then the drugs can be tried.
The mechanism by which this occurs in unclear to me. For the most part treating Bb cysts may be a lot like swatting a stick at an otherwise quiet hornet's nest.
The goal of successful Lyme therapy is to eliminate symptoms and restore health.
These would be parasites(Lyme Bb) have the nasty habit of stimulating our immune responses in ways which are deleterious. The infection- but perhaps to a greater extent, our immune responses makes us sick.
If we lower the spirochete load, minimize the ability of the germs to replicate and reduce or eliminate the harmful immune responses, then hopefully a clinical remission can be established.
In order to achieve this balance it may be necessary to keep most patients on persistent low dose antibiotic therapy. This maintains a perpetually hostile environment for cystic forms.
No- Minocin for example won't kill the cysts, but if any cysts convert into spirochetes, antimicrobial will be on board and nip the conversion in the bud. Disease reactivation will not occur.
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TF
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posted
Just want you to know that LymeMD has only been treating lyme for about 4 years, maybe 5 now. He started treating it when he got lyme himself.
At the time he wrote this blog shown above (2009), he had very little experience with lyme. You could get an appointment with him within a week.
In the early days of his blog (after treating lyme about 1 year), he used to say Burrascano was wrong on a number of things. Then, a few years later, he claimed that when he said that, he was just playing devil's advocate.
He has not been very successful at curing folks of lyme disease. About 2 years ago, I understand he could barely function, based on patients who had appointments with him. They said he could barely move his arms and his brain fog was so bad that they didn't feel they got their money's worth out of the appointment.
Many, many of his patients used to come to me for names of better doctors. At one time, 4 came to me in one month for names of other docs.
So, this doc is still very much in the learning stage when it comes to lyme disease.
He is one of the few doctors who takes insurance and Medicare. So, many are thrilled to get to see him. He sees only one lyme patient per day. The rest of his practice is non-lyme patients. That fact is huge when it comes to developing expertise in this disease.
These facts may add some perspective to the blog. His expertise is nowhere near that of Burrascano's.
It looks like in 2009 he was believing that most lyme patients would have to stay on antibiotics for the rest of their lives, based on his statement: "In order to achieve this balance it may be necessary to keep most patients on persistent low dose antibiotic therapy." So, that was his level of expertise when he wrote the blog shown above by sparkle.
Without cystbusters, he was probably right.
My second lyme doc didn't use cyst busters. After 2 years of his treatment, he told me it looked like I would just have to stay on meds the rest of my life.
Instead, I switched to a doctor who followed Burrascano. He added flagyl to my lyme treatment and in 2 months, we were finished treating lyme.
Instead of having to be on meds the rest of my life, I was done with treatment in 13 months. That was over 7 years ago now, and I have never relapsed.
Can't argue with success. Flagyl did it for me. Treatment without flagyl was not successful for me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sparkle7
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posted
I guess we'll see. Hopefully, canefan will keep posting & we'll see if he gets better. I hope so. Maybe I'm wrong? Some people who post here must be getting better. Too bad they leave & stop posting. Thanks TF. Too bad about LymeMD - I hope he gets better.
Here's a long post about the pros of flagyl from GiGi here a while back (2005) -
Whatever the case - it's not easy going through this protocol with the flagyl.
excerpt from the link above-
What To Expect When Taking A Nitroimidazole
The Lyme patient's response to taking Flagyl, or similar, is rather complex. On the basis of talking with about 100 chronic Lyme patients who have taken Flagyl and closely observing three Lyme patients on Flagyl/tinidazole I think there is a general pattern.
Days 1-6 Mild worsening of symptoms - aches, pains and general malaise. There are often palpitations and some difficulty breathing.
Days 7-10 The honeymoon. Patients feel dramatically better, often with all pain gone, energy returns.
Days 11-21 Unfortunately the honeymoon does not last. While the joint and low back pain may go away, malaise and neurological problems come on with vengeance. Profound lack of energy and motivation.
Days 21-33 Depression. For no known reason deep, deep depression starts about now. It may lead to suicidal thoughts and be very stressful for family members. Being forewarned helps greatly so Lyme patients should warn all those around them before it happens. Depression typically lasts about 10 days. Some Lyme patients react badly to anti-depressants so there should probably be avoided.
Warning! Days 40-60. A number of patients have experienced shortness of breath and palpitations at about 6 weeks. These events may require an ER visit. This may be due to a sudden die off of the bacteria.
Days 34-60 Gradual improvement, especially in neurological status, manifest as "good days". Eventually the "good days" become seven days per week. Profound fatigue remains however and will not abate perhaps for six months. At 60-90 days there should be no symptoms other than fatigue. Time to take a vacation!
Remember individual cases will differ from this average roadmap. Some patients have responded beautifully in a short time and seemingly have stayed well. One lady wrote that a low dose of Flagyl enabled her to escape from her home for the first time in 4 years and was now mountain biking.
Elevated Liver Enzymes One of the classic signs of Lyme disease is alcohol intolerance. This suggests that the liver is an important site in the progression of Lyme disease.
Some patients have experienced elevated liver enzymes while taking Flagyl. This could be due to a side effect of the drug or a consequence of killing the Lyme spirochete within the liver: we just don't know as yet. If it is a side effect then perhaps an alternative nitroimidazole would be an option. If it is a consequence of killing Lyme in the liver the elevated enzyme level may be part and parcel of effective treatment. More work needs to be done.
Peripheral Neuropathy In a similar way the nitroimidazoles may affect the peripheral nervous system. Peripheral neuropathy, typically manifest as numbness of the feet, has been recorded as a side effect of Flagyl treatment. It may be so, but equally it may be a consequence of treating Lyme-infected nerves.
The reports of Flagyl-induced peripheral neuropathy came only in recent years. Did those cases perhaps have Lyme disease? Why wasn't this side effect noted years before? Do the other nitroimidazoles have the same effect as Flagyl? It seems, just seems, that tinidazole is not so likely to cause peripheral neuropathy. That may be because tinidazole is a slightly larger molecule and may not penetrate dense nervous system tissue so readily. On the other hand is peripheral neuropathy just a side effect confined to Flagyl. We don't know.
---
I'm interested in this in case it's something I want to consider. I've been to alot of doctors & got the run around - so, I'm always suspect of what the current vogue is in treatment. I would hope since this posting in 2005 - someone here would know if it really works or not. I wish we had some better statistics on these things.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Tf, I am happy that Flagyl worked for you,but it does not prove that it worked for you because you were killing cysts.
You can't put what happened to you into any scientific context.There could have been numerous reasons why it worked for you.
To know for sure that Flagyl kills cyst,you must first show that taking antibiotics are creating cysts that can be converted into spirochetes in living tissue,which I have shown that they have not done this yet.
Then once you have done that,then you need show that when you take Flagyl,it is killing these cysts in living tissue.
Look at the blue photo's in figure #1,look at photo A,you see all the spirochetes swimming around.Mow look at photo B,that is one day of ceftriaxone kill.
Now look at the photos in figure #2.Those are these so called cysts being formed.But they did not need Flagyl to kill them because when they cultured them,they did not convert back into spiro chetes.
If you want to prove that flagyl works,you first need to show that these cysts that are shown, are converting back to viable spirochetes.
Once you have done that,then you have to go back again show the cysts being formed,then treat with Flagyl and see if these cysts are dying.
To prescribe a cystbusting treatment with flagyl is an enormous leap to take from what you are seeing in the test tube.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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tickled1
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posted
I'm assuming it is not possible or difficult to monitor the same cyst/cysts in living tissue constantly to see the exact effect flagyl would have on these cysts in living tissue. Do you know if that is possible or not? Please explain.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Spirochetes are mobile, cysts I assume are not.So I guess you could monitor them.But you are going to need enough of them to do so.Which is another part of the puzzle.Is there enough cysts being produced to do any harm?
Another way you could do it, is some how extract these cysts individually and then culture them.
In any case,to prove that these cysts are reverting back to viable spirochetes in living tissue is going to be extremely difficult but I think possible if that is what they are doing.
All you can do now is look for clues to see if Brorson,s hypothesis is correct when he says when you put a cyst back into culture they should convert back into viable spirochetes in vivo.
The studies I have shown, show that this is not happening and I believe you can run these studies over and over again and your going to get the same results.
But even if some of the cultures were positive for spirochetes in the studies I have shown,you still would have to show that they came from converted cysts and not spirochetes left over from improper treatment.
To prove that antibiotic cysts are converting back to spirochetes in living tissue,and finding the drugs that kill them the best, is going to take a lot of time and a enormous amount of research to do so.And to prescribe cystbusters with out this research is taking a huge leap of faith.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's not so much a leap of faith when working with educated and experienced lyme literate doctors who have seen what works and what does not - and all in between, up and down, 'round and around.
We are drawing upon THEIR expertise, their skills, their ability to dissect and evaluate the methodologies and constraints of all the studies, assumptions, theories and conjectures as they put any relevant details to work as best possible for us.
THEY do this so we don't have to, and we can focus on doing our work. Sure, we can and should take them our questions from our own study sessions and, chances are, they can explain it to us.
There are many who have completed successful treatment. If at all possible, it seems wise to work with the LLMDs and LL NDs who are part of that success bank as we all still continue to learn more.
Got a question? Ask your doctor and hope they are one who is as educated as possible, across the board, with all tick-borne and stealth infections as well as support measures.
For those unable to find an excellent doctor (I know, I know), we can still educate our selves as broadly as possible, being sure to NOW pencil in the date for the next ILADS conference as there is live video streaming free us for those two days. See www.ilads.org
Or we can ignore their collective intelligence & experience. We can wait for THE perfect test tube message in a bottle with our name on it.
CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub
This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.
Treatment strategies detailed here can help us understand why it's not so much going directly from point ill to point well in one swoop leap but it takes a great many twists and turns.
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Like you said nnecker, it is incredibly difficult to test the cystbusters in vivo. So, in the meantime what choice do some of us have but to try cystbusters if nothing else is working?
I have improved a great deal over the years but am still not well. When I was at my worst I had neuro symptoms so scary that I was positive I wouldn't make it. I know I would have died if I didn't get treatment.
So, for those that are really bad off there is no choice but to trust our LLMD's. I agree more research needs to be done but in the meantime cystbusters appear to be key for many.
Hopefully within our lifetimes we'll see the research done and get more answers. Till then we are limited with treatment options and fighting for our lives.
May I ask how long you've been sick and what your symptoms have been? What kind of treatment have you undergone? Do you see a LLMD?
Posts: 2541 | From Northeast | Registered: Jan 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have been thinking about this. I must confess, i haven't looked at the studies nnecker posted. I will if I get time. It is a very complex issue. We also have to include that many of us may have co-infections on top of everything.
My intuition is saying that Flagyl is a serious drug. I don't know if i would take it given the situation I'm in. I had that choice & I didn't take it. I was already too ill from the other abx I was given. I didn't want to continue not knowing if it was indeed the right way to go. I was more ill from side effects of the abx than I was from my illness.
The suggested course is quite long for something as difficult as Flagyl. It's a very strong drug. Sometimes, the outcome can be worth it but it's a risk. I guess we each have to give it serious thought.
I don't really trust that the LLMDs all know what they are doing. I'm sorry to say but just because someone is an LLMD doesn't mean that they have the answers. Some of them may have the best intentions but they don't know everything. I've seen good & bad reports on all of them - even the most famous & well respected.
Sometimes, we get lucky & the things we are doing work. Sometimes, not... I guess it's called "evidence based medicine"...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Well tickled maybe I might agree with you on that if you have been sick that long.I guess I am mostly speaking to the people who have just been bit.
I was bit twice two weeks apart,got a bullseye on first bite six days later.
I went to the hospital and got three weeks of Doxy.
Second bite,same thing,bullseye,went to my doctor who I talked into giving me six weeks of Doxy at 400 mg per day.
Took the 400mg per day for about three weeks,but backed down to 200mg per day because I had trouble keeping the Doxy down,tried everything.
The first two weeks I was bouncing off the walls and could not stay awake for more then 4 hours.
When I started taking the 400mg per day,my symptoms were gone in 12 days.I have felt fine ever since.(about three months)
So that's six weeks of doxy,three of it at 400 mg per day.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's a really different issue with people who treat right away as opposed to people who may have had Lyme & the co-infections for years & not treated.
In most cases - if you treat it right away, you can be OK. I don't know if some residue of it stays with you for life, looking for an opportune time to come out of hiding & wreak havoc.
Most of the people who I know, who treated it right away, are fine. There are some people - from rading message boards - that aren't - so I can't say it's always like that.
It's really a different animal in people who have had it & didn't know what it was. Years could go by & some didn't know & didn't treat it. Imagine that... It's terrible.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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