canefan17
Frequent Contributor (5K+ posts)
Member # 22149
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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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
Honored Contributor (25K+ posts)
Member # 12673
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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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.
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Keebler
Honored Contributor (25K+ posts)
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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 ]
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posted
No, the truth is the other side of Lyme, and it is still being sought.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
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.
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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.
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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) -
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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.
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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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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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Member # 14257
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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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.
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Keebler
Honored Contributor (25K+ posts)
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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?
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sparkle7
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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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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.
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sparkle7
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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.
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tickled1
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posted
I was bitten in 2000 and never developed a bulls-eye and the tick was not engorged but I pulled it off with my fingers.
I called my doctor and they said nothing needed to be done. I later developed symptoms on and off for YEARS that would come and go.
Finally in 2007 I crashed so hard I became bedridden and got neuro symptoms so bad I was at times paralyzed and couldn't swallow. Also damage to my rt. eye and ear amongst many other things and I was crawling on my hands and knees trying to take care of my 1 yr. old at the time.
It took a year of being bedridden to finally get a diagnosis. I agree Flagyl is a tough drug and I haven't done it until now and ironically I'm not even taking it for Lyme. I have been considering it though for some time.
I'm happy for you that you didn't experience some of the horrific life threatening neuro symptoms some on here have. You are indeed very lucky. I hope you stay well.
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tickled1
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...you are also lucky that you developed the bulls-eye and were able to get dx. Many don't get a bulls-eye or positive test.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TF explains why it is that some seem to get very lucky with short mono-treatment that fails so many more.
It's also important to know that while continued success may be the lucky draw, others have had it return later after treating with just one Rx for short time. If you have the name of a good LLMD, just in case any symptoms flare, that's a good step.
Why some get lucky, sure, early detection and treatment is one fabulous element.
The STRAIN of Bb is also to be considered when trying to guess if one got a lucky strain or if there's a need to keep one eye open.
TF posted this recently: ---------------------------------------------
What many people don't know is that 10 strains of lyme cause only the lyme rash. They don't cause any lyme disease at all.
So, that's why a person can get a rash and just take a little doxy and be fine. They actually would have been fine even without the doxy.
But, before you decide that that is you, be sure you did not have any lyme symptoms at all.
Here is an exerpt from the book "Cure Unknown" by Pam Weintraub in which she talks about this aspect of lyme disease:
Cure Unknown excerpts
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.
A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 �The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn�t infect humans and ten caused only a rash.
Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.
The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi � ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.
The implications are profound. One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed.
Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.
Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a �cure.�
Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?� (p. 344)
(end TF post) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Going back to the very first INITIAL question....
When asked if there was a turning point in my treatment, without a doubt I would have to say Flagyl.
Other than a very bad initial herx, this drug got me back on my feet and I did not find it tough at all. In fact, no side-effects for me. I know it is different for everyone.
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TF
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posted
Flagyl gave me a one week herx, starting at about day 2. I was afraid of the herx because of all of the bad things I had read.
But, my herx wasn't bad at all. The first 3 days were bad and the next 4 were half bad. That was it.
I believe I continued to go to work through the entire herx and the entire flagyl treatment, which lasted 60 days.
So, I experienced nothing like the LymeMD blog--nothing at all like that.
It was a very pleasant surprise. Sometimes, we just hear the terrible experiences and the ones that weren't terrible don't get reported.
Flagyl was a big nothing for me and it worked great! Got rid of my lyme disease.
Also, in my 10 years of helping folks with lyme, I don't recall ANY terrible flagyl experiences.
Just like when I took Levaquin and nothing terrible happened to me. I did weight lifting the entire time I took it. Took it for one month. That is how I got rid of bart. Plus, following up the Levaquin with 11 months of Bactrim DS.
Now, HOW MANY will remember my bland report of what happened to me along with the terrible reports they recall reading?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- TF,
I really appreciate ALL your posts. In fact, I wish you'd put them all together in one thread so we can just post that link for new comers or those who wonder why ILADS? Why LLMD?
Actually, you take that to a higher level with Burrascano guidelines as the template and place to begin. That is included in the thread below but your experience is profound in helping us understand why.
A post or a link to a particular thread where you might detail your success would fit very nicely below. That thread is closed but you can PM me or LymeToo if you want to add to that.
What ILADS is . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
TF, not trying to one up you, but my Flagyl herx started within 7-8 hours of the first dose and it was ROUGH...the roughest and scariest part of my treatment to date.
However, once my body metabolized all the die off, probably within about 24 hours or so, I felt much better.
I have done well with all meds except Levaquin. On day 32 I developed Achilles burning and stopped it. I have been off it for over 4 weeks and I think I am starting to see light at the end of the tunnel with regard to the Achilles.
It sure did a job on the bart though!
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
Nnecker- you need to relax and learn from others experiences. this is not a cut and dried science, just yet!
Posts: 532 | From Texas | Registered: Oct 2004
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posted
dal that,s where we will just have to disagree.Just because someone makes a claim that something works or not is not good enough for me.
I need the science to back that claim up,seems like the safe thing to do.That's just the way my brain works,sorry.
And Keebler,does bouncing off walls and not being able to stay awake for more then 4 hours sound like a rash only strain to you?
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Until they can prove it works in vivo many will have to take chances with it in an attempt to save their lives. Heck, what is there to lose by taking a dangerous drug when the alternative is just as bad or worse?
I understand your stance on it nnecker. Unfortunately there are no easy answers with this. To some degree it is choosing the lesser of 2 evils.
Chemotherapy and radiation aren't good for you either but if dx with cancer what is one to do? I know you will say chemo and radiation are proven with studies but we're just not there yet with the studies for Lyme. I read somewhere that what is applied in the medical field is 20-30 yrs. behind what is being discovered through research.
That is why I say I hope we see a dramatic improvement in understanding of and treatment for Lyme in our lifetime.
Posts: 2541 | From Northeast | Registered: Jan 2008
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-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I read it
The ILADS guidelines authors advocate prolonged antibiotic therapy for patients with �chronic Lyme disease� diagnosed by the non-specific ILADS criteria, on the basis that they believe that there is ongoing active infection, but they offer no supporting microbiological evidence to support this approach. Studies such as those of Klempner et al (Klempner et al. 2001b � ILADS reference 23)
Didn't they just come out with a huge research article that the Klempner study was flawed? This was written by someone inside NIH. Apparently, they knew the study was flawed from the get go.
I understand you feel long term abx are a hoax..you certainly have a right to your feelings/belief. For every study we post-there are numerous studies to refute it.
Perhaps if we try to support each other, admit we don't know-and spend your energy advocating for better research, some questions may be answered.
Don't forget AIDS was swept under the rug for a long time as well.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Tf has her opinion about LymeMD, these people have there opinion on ILADS,it is what it is.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Everyone knows there are 2 different camps regarding chronic lyme and long term treatment.
Most people who come to LymeNet are obviously of the camp that says chronic lyme exists and long term treatment is needed.
The alternative would be to accept they have some mystery illness that cannot be treated and to accept their health will progressively decline and to accept that conventional doctors that don't believe in chronic lyme cannot, or will not, do anything to help.
CHRONIC Lyme sufferers have no choice but to seek treatment beyond what conventional doctors who believe IDSA will offer them.
Do YOU believe in CHRONIC Lyme nnecker?
Posts: 2541 | From Northeast | Registered: Jan 2008
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-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Why are patients expected to research and prove anything about tickborne diseases? That is the job of the NIH and its grantees. So far, they haven't done it. Basically they just enforce a false policy with big bucks. They aren't trying to learn how to treat lyme, they are trying to not treat it.
nnecker, give it a rest. We are tired of this.
Posts: 2888 | From USA | Registered: Mar 2004
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Thought I'd give a quick update and some thoughts.
Since starting my pulse of flagyl I've gained 8 lbs back and have felt very strong. I think it hits Bart or Babs (I really think Bartonella)
When I'm on flagyl I herx for day or two and then start feeling great. (typical coinfections response... quick responding)
And when I stop flaqyl for 2-3 days I get my classic Bart symptoms back (scratch marks, rapid weight loss, irritable, anxiety, insomnia, twitching) - another common theme with Bartonella... quick relapse.
It's very clear to me that Flagyl is impacting my Bart/Myco picture. I'm glad but at the same time worried. How long can I take flagyl. My LLMD wants 5 days on 2 days off for 2 weeks. Then take a 1 week break to see how I do off it. Well I can already tell I won't do well off it.
Anyways.... flagyl rocks for me... I was so excited to gain weight back & exercise & sleep well & think straight.
I'm afraid I'm gonna have to be on abxs for life I know I have a deep infested CNS infection. And once you wake that beast... it doesn't just go away. :/
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
canefan, are you on IV abx?
Posts: 3771 | From around | Registered: Mar 2008
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posted
Poppy,I agree that it sucks that patients need to extensively research Lyme.But that is just the path this disease has taken us down.
With the power of the internet and people with strong one sided opinions,uniformed people can be lead down the wrong path.
I believe people should be shown ALL the evidence about Lyme,and then along with their doctor,whether it be a LLMD or not,let them decide what is the best path to take when treating this disease.
I did my own research and I concluded that I had enough treatment(against the advice of many here) by the evidence of that research.It has been over three months since I have stopped treatment and I feel fine.
Sure, many here will respond with there individual horror stories,but for me, I can't put that into any scientific context.I don't know if what happened to them happens to 1 in 10 or 1 in 100 people.I have ask people here to show me long term patient studies that shows that most of the people who take 4 weeks of Doxy for early Lyme will go chronic, and they show me nothing.
At least show me a mouse study where this happens?There is none.That is the science of Lyme right now,and I think new people who come here should be shown this science.Poppy, you and others here might not like it,but it is what it is.
If you just want to make this a one opinion only Lyme board,fine I have no problem with that.Just post it on the home page and I am gone.
-------------------- nn Posts: 103 | From Northen Neck Va | Registered: Jun 2012
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
No Rumi
Sometimes I think I should be
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Flagyl rocked for me too! It was only when flagyl was added to my lyme treatment that I got rid of my 5-year long false menopause and my ovaries started working again and I went back to being a normal pre-menopausal woman!
That meant that I could stop my hormone replacement that I took for 5 years. I got back normal vaginal lubrication. And, my sex drive and sexual response came back. I hadn't had that for years. That was big! I still remember it and how wonderful it was.
It was thanks to the flagyl that all my terrible sleep problems went away and never came back. Before flagyl, I usually couldn't fall asleep until 1 a.m. and then I woke up every 20 minutes for the next 1 1/2 hours. Then, no more sleep for me. Totally miserable!
The addition of flagyl stopped the progression of my lyme disease. Before flagyl, I got new lyme symptoms such as trigeminal neuralgia. Ouch! It was unbearable. At any time, I could get hit with it. Felt like the left side of my face was being electrocuted. Unbearable. Scary. Made me cry out each time it happened.
Once flagyl was added, didn't have to worry about this anymore. Symptoms just started going away.
And, my dry mouth and dry eyes went away once flagyl was added also. That was so great. Nothing like laying in bed with a totally dry mouth and trying to go to sleep. You feel like you are dying of thirst in a desert.
And, eyes irritated and burning all day long from dryiness.
That flagyl did such wonders for me. It was the best thing that happened to me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
canefan, if you ever want to fly east for a second opinion or IV, let me know.
I can recommend a great doctor to you. She will put you on IV if you want it.
You have to try another doctor before resigning yourself to being on meds the rest of your life.
When my second lyme doc told me it looked like I would just have to be on meds the rest of my life, I switched doctors. And, in 13 months, I was off all meds for the rest of my life!
The doc is the key to getting rid of this disease. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
nnecker,
I agree that long term abx are not the answer for chronic Lyme. Are you aware of the Filarial Worms that Burgdorfer found in the ticks he dissected and as an aside found the spirochetes?
Also another researcher by the name of Eva Sapi found the Filarail Worms in over 40% of the ticks she dissected.
Since I discovered I had this horrific infection after extensive use of antiparasitics and the salt/c protocol,
This was after I was on abx for 4 yrs with little results. I do feel however that I needed abx in the beginning because my bacterial count was so high.
I am convinced that many with chronic Lyme may be infected with this and that parasites are much more of an issue than bb. For the life of me, I can't understand why this has been ignored for so long.
EVERYTHING pictured on www.lymephotos.com is what came out of me after tx with antiparasitics and salt/c. I find it very disconcerting that this is being ignored by most LLMDs. Any thoughts on this?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
P. S.
Canefan Sorry, for sidetracking your thread, and am glad that the Flagyl is helping you. Wonder if maybe it's hitting some of these parasites for you?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
canefan, yes, with any ALS presentation, for sure, IV. But you need an LLMD that really knows ALS/Lyme. The practitioner that TF is recommending is a good one. There's another one much closer to you, however (but you'd still have to fly). The other one specializes in ALS/Lyme.
TF, thank you for the great news about what Flagyl did for you!! I am soooo grateful that you come here to tell us, because we surely do need it!
Gael, I don't discount what you are saying either. I, however, have done a lot of parasite treatment and it helped a lot, but no way did it cure my Lyme, etc. I may need yet more parasite treatment, but the abx is helping dramatically.
Posts: 3771 | From around | Registered: Mar 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Gael - I think it could be for sure. Flagyl hits a lot of junk.
TF - my sex drive is back too. And I'm not peeing every 20 minutes anymore!!! Does seem to help reproductive organs big time. TF can you PM me this Doc you speak of. I see a DOc in Denton, TX ... the first thing he did was give me the book that Dr S (your doc) wrote. And my LLMD didn't say I'd have to be on for life. That's just my intuition.
Rumigirl - ya I agree. I will see what my plans are. I always try to be proactive cuz I know even though I'm feeling good... I know how fast that can go away.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sent you the name.
Posts: 9931 | From Maryland | Registered: Dec 2007
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