Probably the best presentation I've seen on persister cells and why most Lyme patients fail treatment.
I liked how Dr. Z used a dandelion and ying yang sign as an analogy.
You have to watch this in order to understand the resilience and intelligence of this bacteria. Sorry if it's been posted already...
It's so sad that it took this long for the truth to come out... Why Doctors couldn't have done this 10 or 20 years ago, all the lives lost, those that are misdiagnosed, those that end up like Michael J Fox...
I never believed ILADS and IDSA Doctors were looking at two different things under their microscopes. As Dr. Z suggested, it's been known about persister cells for a long time in TB and Leprosy. I'm not buying the IDSA's BS....
The problem with our country is the intertwining of Walstreet/Big Pharma(corporations) and the healthcare system. "Lobbyism" Hope all of you understand that!
Dr. Z stated how you'll have to use up to 3 different antibiotics, including at least 1 persister cell antibiotic to kill all the different forms of borrelia. Sadly, the LLMDs in Michigan are not using these protocols at all.
The LLMDs in Michigan were only using 1 or 2 antibiotics, sorry that's not going to kill off the persister cells, round body forms or the biofilms.
Posted by Bartenderbonnie (Member # 49177) on :
The human body is amazing ! It will let you know when something's wrong.
Anything that causes this much pain, well, you know, it just isn't gonna be good news, ugh.
Thanks for posting charlie.
Posted by Charlie Fitzgerald (Member # 50657) on :
I loved the presentation, I was heart broken seeing a lot of the lyme patients having a hard time getting their point across in the question and answers segment in the Ottawa Conference. https://youtu.be/pT5R5r_akCI
The one Doctor was having a hissy fit understanding that he'll have to use super strong antibiotics like IV Daptomycin to use against persister cells. So what, you'd rather just let patients die? Which they've already been doing for last few decades...
I think the big dilemma were having right now is, we have these persister cell antibiotics that do work. But they are super strong and not everyone can tollerate them real well!!! Lyme patients have a hard time tollerating Flagyl, let alone Dapsone, Pyrazinamide, or Daptomycin.
I've treated with Dapsone and Stevia with a lot of success, made a huge step in my treatment I think, but the problem is the body can only tolerate it for so long. And good luck trying a LLMD in your that will prescribe any of these... Most aren't trained in the recent protocols on persister cells.
Another board recently posted the success Dr. H is having with Rifampin, Dapsone, and Doxy. But honestly, those are some strong drugs put together.
I'm 230 pounds, lean and lift weights, really healthy and close to remission... I can't see most people tolerating that protocol...
I saw in the other forum someone mentioned Dr. H's patients accidentally took too much of this protocol and it helped put them in remission, but it gave them some bad side effects...
I wonder how well Dapsone, Oregano Oil, and Stevia would work....
I see a lot of hope on the horizon...
Maybe taking Oregano Oil in high doses!!! Anyone try that?
Keep fighting Lyme patients!
Posted by foxy loxy (Member # 47053) on :
oregano oil will give you diarrhea if taken in high doses... I took the strongest one out there and had that response!!! Its unfortunate because I did think it may have been helping...
If my new regimen on quinine and clindamycin, daraprim, azithromycin, and doxy doesn't cut my problem, I am going to beg my Dr. for dapsone.
Can it get any worse than quinine side effects??? UGH!!!! Stomach cramps.. muffled hearing and nausea are NO picninc. but I am desperate...
Posted by Charlie Fitzgerald (Member # 50657) on :
Foxy, I think there's no way around it, everyone if they are in chronic stage eventually have to take a persister cell antibiotic if they plan to reach remission. Until a antibiofilm drug like Curza hits the market.
Like Dr. Z said above video, if you don't pull out the roots, the bacteria will just keep coming back like a dandelion.
I've taken just about every antibiotic out there, little to no antibiotic has ever helped like Dapsone and Pyrazinamide has helped me for lyme. Everything that these doctors have said about these antibiotics in vitro matches the treatment I've had to with my own body with lyme.
Ceftin, Flagyl and Tindamax helped me make some strides in treatment, but not like these persister cell drugs have. There was a reason why these drugs were made for a Leprosy and Tuberculosis.
This is what you're up against is, taking longterm antibiotics possibly screwing up your body and organs longterm. Or take a persister cell antibiotic and risk the side effects to cut the time down. You'll have to weigh the risk to reward ratio yourself. Dapsone does have some pretty bad side effects....
I thought Dr. Z broke it down perfectly in the video what causes PTLDS(Chronic Lyme)...
There's a reason why he underlined and put this in red, "Peristers not killed by current antibiotics." From my experience of treating this disease for 6-7 years. Coinfections, genetics, toxins, autoimmune, is extremely exaggerated. Reason people are feeling toxic, fatigue and sluggish is the persister cells and biofilms.
I have never felt this normal and great in years, these persister cell antibiotics with Stevia have helped me greatly.
I'm very much open minded about treating alternative medicine, but I'd say look at it this way, all these years of humans struggling with Leprosy and Tuberculosis. Was there ever a herb of naturpathic medicine that cured Leprosy or Tuberculosis?
This board should be one fire, talking about these new persister cell drugs, but because LLMDs aren't using them, there isn't that much excitement on the boards. This was one of the first posts I've seen on another board https://www.healingwell.com/community/default.aspx?f=30&m=3942041
Like I said through my experience of treating with LLMDs in Michigan, most weren't even using anti-protozoa antibiotics like Flagyl or Tindamax. 5 years later, guess what, I bet they still aren't. It's been reported numerous on how some of the LLMDs in Michigan treat with weak antibitoics
I feel very optimistic about the future, but a lot of this is slowly getting relayed to LLMDs and lyme patients in other states.
Plus a lot of people are kind of scared of taking Dapsone... It is what it is... Like Dr. Z said in the video, it's a very hard bacteria to treat, you try treating Leprosy and Tuberculosis with just doxycyline, you're not going to get anywhere. Word is out, Lyme is a persister cell disease.
Posted by Charlie Fitzgerald (Member # 50657) on :
I'm still seeing posts like this on a daily basis, people still don't understand why they aren't getting anywhere with just one antibiotic like doxy.
I think it would be a good idea to do a pinned topic on the recent findings on John Hopkins persister cells, but that's just me.
If they win in this case against the CDC/IDSA and eventually the guidelines are changed, it's a scary thought how long it will take to re-educate Doctors on Lyme Disease.
Posted by Richard_F (Member # 50948) on :
I hear Dr. H's name thrown around a lot on leading the charge on Dapsone and such but its really Dr. J in DC that has spearheaded the trials more he's just not a limelight type guy ;o)
Dr. J told me that he lead the trials on PZA and originally thought it would triple as a persister, biofilm and babesia destroyer. Well he got 2 out of 3 right it didn't do much against Babesia.
I'm going on Dapsone in a few months after finishing up beating the tar out of Babesia.
Dr. J has a fairly standard approach hits Babesia hard (as he believes its THE pathogen that gets in the way of making improvement on others). Once done he puts you on a Bartonella and Persister cocktail which looks similar to Dr. H.
In the end who cares who came up with the solution it needs to get out there.
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by Richard_F: I hear Dr. H's name thrown around a lot on leading the charge on Dapsone and such but its really Dr. J in DC that has spearheaded the trials more he's just not a limelight type guy ;o)
You're right, Dr. J doesn't get much credit like he should and doesn't stay much in the limelight, but he definitely spoke up when a chance to in the lyme documentary.
Like when he said that the IDSA/CDC was lieing, "The lie is too big to confess!" I knew he was a great Doctor, giving his honest opinion shows courage. Probably why the IDSA/CDC came down hard on him compared to Dr. H....
I liked Dr. H's style of treatment, which was very aggressive. Using IVs and stronger types of antibiotics, which was why I think he was so successful with Mandy Hughes treatment.
There's a reason why Mandy reached remission in 7 months and never relapsed....
quote:Originally posted by Richard_F: Dr. J told me that he lead the trials on PZA and originally thought it would triple as a persister, biofilm and babesia destroyer. Well he got 2 out of 3 right it didn't do much against Babesia.
Most persister cell antibiotics from my understanding aren't going to kill "active" borrelia. Why it's been told time and time again you'll have to use a combination of antibiotics to destroy round bodies, biofilms, and persister cells. Like Dr. Z expressed in the video up above!
If you don't, chances are you'll keep relapsing. But I think it's been found why this chronic infection is so hard to treat, which is the biofilms and persister cells.
Not many LLMDs or Doctors in general are trained properly to hit these persister cells hard. They just aren't, this new information that was just recently found out, it's slowly slowly reaching the LLMDs.
I had printed it out and gave it to my LLMD in Saginaw in Michigan the week of the news came out about the anti-persister cell drugs from the John Hopkins study. He looked at it, tossed it aside... He seemed interested, but he never tried treated me with any of those. I don't treat with that Doctor anymore, but it makes me wonder if he uses any of these persister cell drugs mentioned in the study? It being like 2 years later.... Doctors are just so set in their ways...
I think even though that most LLMDs are good doctors, they're still not keep an open mind or staying in tune to the recent breakthroughs in Lyme Disease.
quote:Originally posted by Richard_F: I'm going on Dapsone in a few months after finishing up beating the tar out of Babesia.
Dr. J has a fairly standard approach hits Babesia hard (as he believes its THE pathogen that gets in the way of making improvement on others). Once done he puts you on a Bartonella and Persister cocktail which looks similar to Dr. H.
I'm starting to be real skeptic on how chronic coinfections is making Lyme compared to the persister cells, which is round body forms and biofilms. Just my opinion.... I never really hit this persister cell part of the bacteria hard, "I thought I did with antibiofilm enzymes," it wasn't until I used the persister cell drugs is when I started to see a real big breakthrough in treatment.
Many LLMDs believe just because they're using these so called antibiofilm enzymes, they think they're breaking up the biofilms, which I did many times over. Sorry, nope, this was all based on hypothesis!!! Serrapeptase, natto, EDTA never did nothing for me. Until I starting pairing up Stevia with the persister cell antbiiotics like Dapsone....
There's so many people convinced that it's parasites, genes MTHFR, PANDA, autoimmune, etc... People have been getting wrapped up in all this stuff, come to find out, it's probably just the persister cells keeping sick.
I think without a doubt babesiosis could still keeping a good portion of lyme patients chronic. But as for other coinfections like bartonella and ehrlichiosis, they should be knocked out with the other 2 antibiotics used with the persister cell antibiotic.
When you go on Dapsone, just make sure you do exactly what Dr. H said. Which is using a pure Stevia tincture with it, along with another perister cell antibiotic like Rifampin or Clofazimine and Doxy. That's if you can tolerate another antibiotic with Dapsone, I couldn't, but I still made a lot of breakthrough treatment with Dapsone and Stevia all on their own.
I'm on Clofazimine, Pyrazinamide, and Doxy right now. I can tell you I never felt herxing like this before....
All this is from my experience, anyone can come in and disagree if they like. But what these ILADs scientists and doctors are finding in vitro, has been working similarly for me in vivo.
By the way, when you treat with Dapsone, the hardest part will be fighting the anemia. You'll have to find a folic acid that works well for you. But I found a slow releasing iron supplement by Kroger, which has helped me in collaboration with Folic Acid. All other iron supplements made me feel sick and I could taste the iron in my mouth....
Posted by Bartenderbonnie (Member # 49177) on :
Here's my two cents Charlie Fitzgerald
I mentioned switching up my protocol with my LLMD last month. She was hesitant. She said "why rock the boat, you are doing so well."
Herein lies the problem, I believe. When your doctor see's a remarkable positive transition in their patient's overall health,, they assume they are on the right path. Why wouldn't you think that ?
But I say, why rest on your laurels ? Now you have a patient that is healthy enough and strong enough to pull out the big guns. This is the time to hit it with your best shot..
Posted by Richard_F (Member # 50948) on :
Very informative posts Charlie thanks.
Dr. J I think does Dapsone and Daraprim simultaneously. Not sure if he mixes in Alinia on a different week but he uses that as well. I think he also will toy with Ivermectin he says to get at "gut parasites".
I like the approach Dr. J takes with his pulsing as it allows you to hit the bugs very hard (like you need to) but also give your body a chance to recover from the napalm you're hitting it with. Old LLMD's will still hit you with lots of meds daily for months on end which can get you into a nasty cytokine/inflammatory storm where you can't recover well.
So I've been on Dr. J's babesia protocol for 8 months. He recommends Super Artemisinin but I use Zhang's Artemisiae-2 which packs quite a wallop. He also uses Enula for some parasite coverage.
I still have my main symptoms slowly getting worse (nerves) so he's mixing in Rifabutin/Bactrim one week and Alinia another week for the next few months to hit it some.
When I return in Feb babesia should be completely dead and bruied and it'll be the rifabutin/bactrim/dapsone/daraprim/alinia mix. I feel confident this will whack any double walled gram negative bacteria remaining, remaining parasites and put a hot knife like butter to the biofilms.
Posted by Rivendell (Member # 19922) on :
I read a researcher online that suggested taking a chemotherapy drug, OR allowing the infection to re-emerge, then zapping it with the usual antibiotics until your feel better, stopping the antibiotics, letting the infection emerge again, then starting the antibiotics and continuing and then stopping them when you feel better. Continuing this until you are well.
In the book "Cure Unknown", by Pamela Weintraub, she got well with that technique. She was seeing Dr. Burrascano (sp?). That is also how he got rid of lyme.
But I have been afraid. The symptoms are horrible, and I'm sure I would be wondering each time if the anitibiotics will work, or will I be stuck at the bottom of the pit.
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by Richard_F:
I like the approach Dr. J takes with his pulsing as it allows you to hit the bugs very hard (like you need to) but also give your body a chance to recover from the napalm you're hitting it with. Old LLMD's will still hit you with lots of meds daily for months on end which can get you into a nasty cytokine/inflammatory storm where you can't recover well.
I second that on taking breaks. I took long 2 month break from Dapsone, before starting up on pyrazinamide.
Pulsing in general is said to be good anyways...
quote:Originally posted by Rivendell: I read a researcher online that suggested taking a chemotherapy drug, OR allowing the infection to re-emerge, then zapping it with the usual antibiotics until your feel better, stopping the antibiotics, letting the infection emerge again, then starting the antibiotics and continuing and then stopping them when you feel better. Continuing this until you are well.
In the book "Cure Unknown", by Pamela Weintraub, she got well with that technique. She was seeing Dr. Burrascano (sp?). That is also how he got rid of lyme.
But I have been afraid. The symptoms are horrible, and I'm sure I would be wondering each time if the anitibiotics will work, or will I be stuck at the bottom of the pit.
Well it was said that mitomycin c completely wiped borrelia out in vitro in the John Hopkins study.
I'm not well informed on chemo, so I really have no comment on that, I've just heard through Cancer patients it can devastate your immune system. I think antibiotics are always a safer route, but then again you better be replenishing your probiotics and detoxing with liver aid and alpha lipoic acid or your gonna run into problems.
Pulsing has shown to work in John Hopkins Study, I think Dr. Z touched on this, but it's still the matter of taking the right combo of antibiotics and persister cell antibiotic for your lyme infection.
Depending on location, I'm sure each strain of borrelia responds differently to the persister cell drugs. I think it's been said that the borrelia in northeast is more aggressive than the borrelia out west?
I'm just glad they've finally made a breakthrough in treatment and patients are starting to feel the results, including me. It gets tiring dealing with this disease for 6-7 years...
I've tried a lot of antibiotics, even roxithromycin, bactrim, minocycline.... The bacteria just keeps coming back, I totally feel different results using these different drugs.
It's just sad a lot of us had to burden our body with antibiotics that basically don't work on persister cells, I can only imagine that makes the bacteria even more resilient. It's been said that Lyme was a lot easier treat in the 80s.
The bacteria is evolving and becoming harder to treat without a doubt, throwing weak antibiotics that do not treat the persister cells, we're basically asking for some serious problems, the CDC/IDSA are without a doubt a blame for this. Even though they think we are....
Maybe coinfections still play a major role why the disease is harder to treat compared to back in the 1980s... But then again, MRSA and even tuberculosis is evolving a becoming harder to treat each year they say...
Like Dr. Z said, we still don't know enough about the disease and we must keep an "open mind."
Posted by foxy loxy (Member # 47053) on :
Thanks for this Charlie... I am definitely throwing these ideas out to my Doc.
Babesia seems to be my biggest problem. Do you know if these drugs knock out babs?
I think we really need to be getting the word out about these drugs to the larger lyme community...
Posted by Charlie Fitzgerald (Member # 50657) on :
I heard others saying Dr. H claimed Dapsone hits Babesiosis pretty hard...
It's worth a try, even worth a try taking it at low dosage like 25mg if you're worried about side effects. I made some big steps in treatment just using 25mg dapsone and stevia together.
People are more prone to hypersensitivity when they start mixing other drugs together, just hope others are well aware of that.
From my experience dapsone is a strong strong drug, lot stronger than Pyrazinamide. But I know that Dr. H recommends Dapsone before Pyrazinamide for a reason.
I know there's plenty of lyme patients that would never take these persister cell drugs, I see people making comments how these drugs are helping patients reach remission, but then people hitting back saying they're too dangerous to take.
I sense a bit of bias because a lot of jealousy there, because others are reaching remission while others are stuck with the standard antibiotics their local LLMD is just giving them. I know for a fact that there's LLMDs in Michigan that won't even budge on giving your Flagyl or Tindamax, this is really sad...
I came to the point in my own life where I have to try something new or I'm going to go out of my mind. Lyme will eat away at you physiologically, while everyone is living their lives making money, working, taking vacation and enjoying life.
I have to get back to work. I don't plan to deal with lyme all my life and walking around like a zombie!
Most will get to 80-90% on just traditional antibioics, just like I have. But there's very few that are going to reach remission without taking a persister cell antibiotic, that's the realization and conclusion I've come to. Especially after trying these persister cell drugs myself and having much success. That's the way it is with Turbulosis, that's the way with Leprosy, that's the way it is with MRSA.
It's even sadder what patients have to deal with Cancer and AIDs patients have to risk in order to stay alive, but it is what it is.
I'm a big advocate for alternative medicine, like rick simpson oil for cancer. I think it very much helps patients with pain and killing cancer cells. But sometimes treatment just doesn't work, I tried RSO for 6 months on lyme, it didn't cure me. I've tried a lot of the alternative medicine with not much success.
Make sure you read up on all these drugs before you take them, make sure you're taking Liver Aid, Milk Thistle and Alpha in high doses if you're gonna go on any of these. Including some baking soda cleanses drinking....
Posted by Charlie Fitzgerald (Member # 50657) on :
I think there's eventually going to have to be 2 categories on Lyme Net and other forums, one for antibiotics/persister cell drugs and another naturopathic medicine.
Because from what I see, these breakthrough treatment posts are getting buried, while the forum is getting filled up with other stuff. If I were a moderator, I'd make a sticky on the recent breakthroughs in treatment with persister cells drugs.
Those of us that have success with these persister drugs can't keep coming back making new threads. I think a lot of people are just moving on with their lives, while the other stuff is filling up the forum.
I just can't believe more isn't being talked about with the recent breakthroughs on persister cells. I'm kind of dumbfounded....
What I think it is, is the lack of doctors willing to treat with them. Just like how the supposed LLMDs in Michigan wouldn't even treat with Flagyl or Tindamax, two major antibiotics that are used on round bodies and biofilms.
Man I sure hope this changes....
It's scary how a medical breakthrough happens and how long it takes for doctors to actually catch on and start treating with it....
This video should have a million views, be on TV, spread amongst all the lyme forums... Yet it only has 1,000 views... What's scary is not more lyme patients discussing stuff like this.
Posted by Richard_F (Member # 50948) on :
>>I heard others saying Dr. H claimed Dapsone hits Babesiosis pretty hard...
Dr. J said Dapsone didn't work all that well hitting babesia. He says the way to deal with babesia is having the right meds (e.g. Atovaquone, Artemisinin, Enula maybe Crypto) and being persistent. Most of his patients clear it in 4-5 months other can take 12-18 months its different for every individual.
Posted by TF (Member # 14183) on :
Here is a post I made in June 2017 that is Dr. H talking about treating persisters with the new antibiotics/combos:
In this video Dr. H. also addresses his clinical experience with some of the newer drug regimens, identified by Dr. Ying Zhang from John Hopkins University, as being effective in eliminating Borrelia burgdorferi persister cells.
(Feng J, Auwaerter PG, Zhang Y (2015) Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline. PLoS ONE 10(3): e0117207. doi:10.1371/journal.pone.0117207).
So, we can use this thread to gather together a lot of resources on the topic of persisters. Or, you can make a new thread to do the same thing, and call it "Persisters--videos, treatment, etc." or some such thing.
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by Richard_F: Dr. J said Dapsone didn't work all that well hitting babesia. He says the way to deal with babesia is having the right meds (e.g. Atovaquone, Artemisinin, Enula maybe Crypto) and being persistent. Most of his patients clear it in 4-5 months other can take 12-18 months its different for every individual.
He could very well be right, without doubt a lot of ILADS doctors have a difference of opinion on things.
quote:Originally posted by TF: Here is a post I made in June 2017 that is Dr. H talking about treating persisters with the new antibiotics/combos:
I watched quite a bit of his presetnations a year ago, I'll give it a watch again, see if I pick up on anything new on this one from 2017
Gotta always stay up to date, science is always changing, that's what's great and interesting about it!
Posted by Charlie Fitzgerald (Member # 50657) on :
Some great bullet points you made there TF...
I began pulsing dapsone myself, because it's tough to tolerate, worked well.
Gonna take a break from pyrazinamide for 1 or 2 months, take a break, then try dapsone again.
I hear that rifampin+dapsone+doxy is just crushing lyme disease.
Posted by Bartenderbonnie (Member # 49177) on :
Charlie Fitzgerald says " Gotta always stay up to date, science is always changing."
Unfortunately the CDC didn't get the memo.
Posted by Charlie Fitzgerald (Member # 50657) on :
Watching his presentation now, real interesting how he said bartonella is also a persister cell bacteria, as well a babesia which is showing up in 40% of the ticks in his area.
Man this disease is becoming a real problem...
Interesting how he said one young guy got out of a wheel chair after taking daraprim/Pyrimethamine, an anti-parasitic, after trying many other antibiotics.
Lot of great information in there, I really hope he educates Washington since he'll be sitting with the board of directors on this disease.
I really enjoy how he throws in a joke here in there to maybe help wake people up, have to remember people these days have short attention spans... Lol bagel disease, I for one plan to stay gluten free for the rest of my life after seeing just simple reovirus can trigger celiac.
Such a great Doctor, glad we have him on our side!
Wonder what he ranks on an IQ test, he's gotta be up there, guy seems to be a complete genius... I wish Dr. J would do updates with success in his practice!!!!
But I know not everyone is a great speaker, it's a quality that not everyone has. Not to mention the hell he went through with the CDC/IDSA, probably made him real reclusive...
Posted by Brussels (Member # 13480) on :
If you google 'candida' and 'persister cells', you'll see that candida and fungi seem to produce persister-cells when they become chronic.
As candida becomes a problem during lyme, well... add another one for the list... unfortunately.
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by Bartenderbonnie: Charlie Fitzgerald says " Gotta always stay up to date, science is always changing."
Unfortunately the CDC didn't get the memo.
Got a good laugh out of that one Bartenderbonnie... https://youtu.be/8bchnLOT7ic Posted by Richard_F (Member # 50948) on :
>>Watching his presentation now, real interesting how he said bartonella is also a persister cell bacteria, as well a babesia which is showing up in 40% of the ticks in his area.
biofilms and persister forms for many types of tick borne pathogens may be the missing link we're looking at to getting more folks well.
Posted by terv (Member # 29410) on :
I thought that this was a great interview with Dr. J.
I watched it a while ago so the things that stood out is that
1) It had a lot of information 2) His legal bills prevent him from doing a lot of publishing and a lot of other things. 3) He may be opening a clinic in Ireland. Somewhere away from the health care system in Europe or Britain. Can't remember what he said.
The interview was done by a British person over the phone so sometimes audio is bad.
Posted by Harmony (Member # 32424) on :
Thank you!
Posted by dbpei (Member # 33574) on :
Yes, thank you for this thread and great info!
Posted by klutzo (Member # 5701) on :
Thanks for this thread....very interesting.
FWIW, I was put on Flagyl for suspected SIBO, and w/in 30 hrs. after taking the first dose, all of my Lyme symptoms were 95% gone!
All 4 of my sleep disorders were gone, cognitive problems gone, depression and anxiety gone, Irritable bowel and bladder gone, digestive problems gone, all over pain and fatigue gone.
All that was left was a little of my usually ferocious low back pain.
I was laughing again. I was able to drive again after years of being stuck at home.
I could be in crowds again and go in stores that chemicals used to keep me out of.
Being able to sleep 8 hrs, with only one awakening in the middle was the very best part of all!
It stayed that way, w/o any herxing, the whole 3 weeks I was on it, then slowly went back to my normal hell over the next 2 weeks after I stopped taking it.
I was put back on Flagyl for 3 more weeks with the same results, then told I could not have anymore.
I waited 1 1/2 yrs. to get into the only "Lyme specialist" near me who took insurance, and she told me there was no way she would ever give me Flagyl long term because "It will destroy your liver".
I told her I did not care. After 33 yrs. of hell, I am suicidally depressed and if I can have one month of being normal and then die, I will die happy. That did not impress, of course.
I have tried every natural way I can find to fix my gut the way Flagyl did to no avail.
From what I've read, only those with C. difficile can get fecal transplants now. When this new pill form comes out, I'll bet each pill costs hundreds of dollars and will not be covered by Insurance.
It is so frustrating. I wish these people who deny us the best of care could be put in our shoes for just one week.
![[Frown]](frown.gif)
Its unfortunate because I did think it may have been helping...
