If H2S is the cause? Is Bismuth subsalicylate the treatment?

I don't think H2S is the cause but a by product of altered gut bacteria. It would be interesting to know if this pepto bismol helps anyone though...

My understanding of De Meirleir's H2S theory is that a positive test indicates a gut dysbiosis that may be common to 80-90% of patients. I don't think he considers this 'the' cause but more an indicator there's something wrong in the gut that needs further investigation.
That's an interesting idea about a protective mechanism, I hadn't thought of it that way.
Cheers
Tony...

Pepto Bismol and Lyme

I think I will try this.

Since I've been on high-dose antibiotics, my gut is messed up and, well, let's leave it at that.

I read in an older Townsend Letter that bismuth is active against Lyme. So that's another good reason to take it.

Does anyone have suggestions as to when to take it? I'm taking several things that have to be taken away from other things (thyroid vs minerals, tetracycline vs probiotics and minerals, lipospheric vitamin C empty stomach, fibrinolytic enzymes empty stomach, fiber to pull out heavy metals empty stomach).

I do have to eat sometime! I'm thinking I could take it when I take minerals, does that make sense?

Thanks so much for this.

Kelly

Aluminum and pepto bismol

I'm interested in trying the pepto bismol, but I noticed aluminum in the product. Aluminum has been associated with Alzeheimers and neurological problems. Is there a more natural form of bismuth?

thanks

Pepto Bismol has salicylate in it, thus . . .

I have many gut problems and the neurocognitive ones that Logan and de M, themselves and via Cort, has described. That's what drew me to this forum and I shall be discussing it with my ME doc when I next see him.

As for P-B, if it has alum in it, I would surely stay away from it on that count alone. But in the last few years even products that you apply to the skin for pain, if it has salycylate in it I get severe migraines. Which is a bumnmer because P-B has helped symptoms.

I remember hearing of "bismuth salts" as something like a home remedy that grandparents used. I haven't any idea if the can be attained or if without other ingredients it would be effective but if anyone can find out that would be helpful.

One article mentioned peppermint oil. I have been using a product in the US that are little green gel pills that have just "simethicone" in them but a doc told me they are peppermint oil. I can't unpack that one but they do help me. OTC sometimes called "Gas-X." And the same ingredient but one that has other ingredients is made in a chewable wafer form that I find too sweet, I don't know what poison they use to sweeten it.

I rub peppermint oil put out by NOW on painful muscles or even achey ones. I cannot live without it. It is $9 per bottle and goes awfully fast, but it is the only pain rub I get help from that doesn't cause side effects.

But I am interested in bismuth and hope that someone who has the kind of knowledge required can find out if bismuth that doesn't require seeking out P-B might be gettable and also effective.

Judith

the pink stuff

I should have read the label first. Anyway, it did help if I took it often.

After taking the PB for a few days, I discovered that the avemar was bothering me (it has fructose and I wonder if that is why). I went off that and I haven't needed the PB.

I still have some symptoms, but am a lot better. I would love to try the antibiotic (forgot the name) that just kills bad guys in the gut. Not likely I can talk my doctor into it though I printed out the article. I think it was Cort's post about increased lactic acid intestinal bacteria with Dr. de Meirleir as one of the authors.

Meanwhile, that is a great idea, Judith, to look for bismuth in some other form. I will try to find out, maybe the compounding pharmacy would know.

Kelly

The "Six and Six"

Hi all,
This is my first post here. I have Lyme/FMS/CFS and have been using Pepto Bismol to kill Borrelia in my gut for over two years now.

The protocol is called "the six and six" to help you remember it. Every six weeks, you take Pepto for six days to lower the bacterial load in your gut. Bismuth kills borrelia. I find it only takes one adult dose per day to make a huge difference. I have found I need to do it every five weeks, or I start getting lots of tummy pain again.

Pepto is the only thing that helps the constant gastritis that I get. I've had 3 negative biopsies for H. Pylori, so I know it is not that being killed.

As far as the aluminum in Pepto, I know I read somewhere that they found that study on Alzheimer's was contaminated. It turned out they were using aluminum instruments to extract the brain tissue they tested, thereby invalidating the results.

Whether what I read is true or not, you get far, far more aluminum from wearing deodorant anyway, unless you are lucky enough to be able to use the natural ones. They all have chamommile, and I am very allergic to it.

Plus, I live in Florida, and they just aren't strong enough for this climate. I help lower my burden by applying deodorant only 3 days a week, and not at all in our four cooler months.

I would give Pepto a try. You may be surprised by how much it helps. I know I was.

klutzo

klutzo welcome

Hi,

I'm very glad to read your experience. I've been missing the Pepto Bismol. Do you take it away from antibiotics? (I already forgot, are you on antibiotics for Lyme?)

Since I only recently found out I have had Lyme Bb for 11+ years, I'm trying to learn about it. It's great to have someone with experience, though I am concerned to hear that you are stage IV. That sounds bad

Please keep posting and tell us more. I'm going back on the pink stuff (great riff on deodorant BTW).

Kelly

The Pink Stuff

Nice to meet you, Kolowesi,
Unfortunately, the reason I am in Stage IV is because I was misdiagnosed for 18 years, first with MS, then FMS/CFS. Of course, FMS/CFS was not a misdiagnosis, but more of an under-diagnosis!

By the time I was correctly diagnosed in 2004, which only happened at all because I developed severe Lyme rage, which was totally out of character for me, my acquired immunity (TH2), which was running in overdrive as it does in this disease, had made me allergic to all antibiotics but fluroquinolones. As I'm sure you know, they do not kill borrelia. I had skin testing done in the hope that it was just herxing that caused my antibiotic reactions, but all skin tests were highly positive.

So, I've only had herbal treatment protocols, ie. Zhang and Cowden. Zhang did nothing, Cowden put me through horrific herxes for four years, but the progress of the Lyme was relentless despite all that. I've been in Stage IV for 2 years now, having been diagnosed with severe exocrine pancreatic failure.

I'm afraid I'm no help in answering your question, since I'm one of probably a very small number of Lymies who've had no antibiotics at all.

If I had to take a wild guess, I'd say taking Pepto about an hour or more after antibiotics might be best. That would give them time to be absorbed, and the Pepto coming afterwards might soothe what the antibiotics do to your tummy.

klutzo

klutzo misdiagnosis

Dear Klutzo,

You are so brave and matter-of-fact.

Rage, though caused by the Lyme, was probably appropriate on all levels!

I don't know anything about the pancreatic situation, but am hoping you will find healing somehow. This is such a deadly little creature, the borrelia.

Then to have developed such hyper-sensitivity makes it an incredible challenge.

Antibiotics are a two-edged sword, but at least they are a weapon. I'm pretty sure I have the cysts because of taking antibiotics for mycoplasma; not a strong enough dose to kill the Bb, but enough to make it change forms.

So maybe you don't have the cyst form, unless the herbs cause that too.

I was just reading in The Townsend Letter about a pancreatic cancer cure involving high levels of pancreatic enzymes. Is there any treatment to help your pancreatic failure???

Thank you so much for the Pepto Bismol info. I took some last night and feel better already. Do you have the energy to write up a personal profile for everyone to read? At least we could be a support system for you.

I'm glad you found out what was wrong, finally. I wonder if Lyme Bb is a modern day plague, slow-acting, under-recognized, dis-believed, mis-diagnosed, and not covered by insurance.

Your Lymie friend,
Kelly

Cyst forms and enzymes

Hi Kelly,

My Lyme diagnosis was done with the now defunct, but formerly cutting edge Bowen QRiBb test. I had it done twice, several months apart, to be sure. The results come with pictures of the organisms in your blood under their special fluroescent stain. They also give you a serial dilution, which is the percentage of organisms in a certain amount of blood. I had the highest possible number on my first test. After 8 months of herbs, I had dropped two levels, but it was still very high.

If I had any doubts about the accuracy of the Bowen test, they were removed when I started herxing horribly on just one drop of Samento. I used my husband as a guinea pig, to make sure the herxing I'd heard about on Samento was not really a toxic herb reaction. Since he did not have Lyme, I figured if he herxed, then the herb was toxic. (I tend to be skeptical about everything until proven otherwise). He was able to get up to the starting dose of 15 drops daily right away, with no symptoms at all, and took it for a week with no symptoms. After 4 years, I could not get beyond 9 drops per day, could never take any after noon and expect to sleep at all, and 9 drops per day made me nonfunctional from herxing, so I cut back to 4 drops to prevent major herxes. To be fair to Nutramedix, the makers of Samento, they say herxing is bad, and users should take one drop less than what makes them herx. I was upset that I could not even get to the starting dose, so I was pushing myself, and probably caused end organ damage by doing that, since I obviously do not detox well.

My first QRiBb test was done prior to my having had any treatment at all, not even herbs, and what they found were all all L-forms, which I believe are the same as cysts, or at least that is what they look like in among the red blood cells on my pictures. I believe my immune system attacked the spirokeetes in my blood early on, and they went into L-form to protect themselves from that. So, I don't think you should necessarily blame your mycoplasma treatment for your pathogen being in cystic form. Just my two cents.

Regarding your enzyme question: I now must take over 600 high dose prescription digestive enzyme capsules per month to be able to eat anything at all. I am not aware that this could cure pancreatic cancer. On the contrary, I've been told my condition would limit my life span by 20% if I were otherwise totally healthy, and that it increases the chance of pancreatic cancer. Death with pancreatic insufficiency comes by either pulmonary, heart, or kidney failure, and lately I've been having all the symptoms of kidney failure. Having recently reached the Medicare "donut hole", I must make do with OTC enzymes for the last 3 months of this year, and they do not work well at all, so I expect to be quite ill again. Before I got the prescription enzymes, I was losing 4 lbs. per week and my hair and was only able to keep down about 600 calories per day. Before you ask, we are too "well off" to qualify for help with prescription costs.

You may be aware of the 25 year retrospective done by Canadian CFS specialist, Doctor Byron Hyde. He followed his patients for 25 years and published a report on the results. If I remember correctly, pancreatic failure turned out to be the number two most frequent cause of death, with suicide being number one. That really shocked me, since I'd not heard anything about pancreatic failure being involved in these diseases before. In Lyme, suicide is first, and heart failure is second. I think Dr. Hyde found less than 10% were alive 25 yrs. after diagnosis, a very discouraging statistic.

As you mention, I am "matter of fact" about this for two reasons: 1) I have some "abilities", and have known for quite awhile that my life span would be about the same as my mother's, who died at age 60, and, 2) I have been miserable for 24 years, with almost everything I care about taken from me by this illness, and my husband's life ruined by it as well. I am ready to go home to God. The only thing I ask is that I be allowed to last long enough to see how the TV show "Lost" ends next spring. I am a "Lost" fanatic!

Most Lyme doctors I've read about tell their patients to take digestive enzymes. I have a couple of close Lyme cyber-pals who have been put on enzymes by their LLMD's, despite no symptoms of needing them. I saw some research a couple weeks ago, but can't remember where (sorry, Lyme brain) that stated that having Lyme reduces the effectiveness of digestion by 20,000%!

So, when I started having problems, I did not seek help, assumed it was the Lyme, and took OTC enzymes. Over the years, I had to take more and more, as more and more foods gave me trouble. Eventually, my gallbladder acted up, despite my never having taken Rocephin! I think maybe the Lyme is responsible some of the time, yet we always blame the 80% loss of gallbladders in Lyme Disease on Rocephin. Anyway, to cut to the chase, I was brushed off for years because my gallbladder tests kept coming up normal, and meanwhile, it turned out that tiny gallstones were constantly backing up in my pancreatic ducts, preventing the enzymes from getting out when I ate. So, I could not digest my food without enzymes, and the enzymes my pancreas made were stuck in my pancreas with no way out, so they digested my pancreas. The moral of this story is to get aggressive with the doctors. With benefit of hindsight, I would have threatened them with a lawyer for not looking further for the cause, and sending me home from the ER over and over with a bogus diagnosis of gastroenteritis, despite the fact that I have major chills when I get sick to my stomach, which is a sign of bacteremia.

You asked me to fill out my profile. I will try to find time to locate the profile and fill it out. Unfortunately, no matter how sick I am, I have to run my husband's corporation from home, take care of the house and a very sick cat, and do all the maintenance work that keeps me going, which takes hours every day, as I'm sure you know. As I get sicker, I have to sleep a lot more too, so I have less time to get things done and have to keep cutting things out of my life. (I came back later, after doing my exercises and taking a shower, and looked at my profile and found I had filled it out when I joined. I noticed I spelled one of my doctor's names wrong, but it would not let me edit, and I tried 3 times. I am not sure.... what else should I be filling out???).

I hope you are having a good day today,
klutzo

In reading that the aluminum in PB was the result of bad methodology I guess the only thing to do is search medline to see what others have said.

The main point I really wanted to make about PB is that it has salycilate in it and in me causes bad migraines. Also, while I don't know the connection to this but I recall that Paul St. Amand's protocol for guaifennisan required absolutely no salicylate while taking it, which doesn't mean that sal.... is bad just contraindicated with that protocol.

In conclusion, it would be nice if bismuth is what we need re certain bugs in the gut, if someone discovers if bismuth salts still are "gettable" and if that form of bismuth would be as effective. If I have time I shall ask my doc on Wednesday and relay his answer.

Judith

klutzo the endgame and Lyme

Dear Klutzo,

Mea culpa for adding the profile to your to-do list!

What I was referring to is the Personal Statements section, where anyone who wants can start a thread about their situation/history/philosophy/experience.

What you have told us in these few posts seems so valuable. I was just thinking a larger audience would benefit. I'm not sure how many on here have Lyme, or suspect they have it.

In spite of the losses you have endured, you still have a sense of humor, a sense of responsibility, and are engaged with life. I pray that you will still be here at the end of "Lost" and even longer, if it is not too miserable.

It's so unfair that you can't afford the medicine you need to deal with the results of being misdiagnosed.

That's a lot of pills, 600 per month! But it helps, so you do it. You are one strong person.

I thank you so much for spending your energy telling your story. It is remarkable that you are still alive. I'm glad to hear you have certain abilities, and are at peace with what comes next.

It's very good to hear the stories of those who have survived such difficult challenges. It gives me heart and shows me how to be strong.

Kelly

Judith bismuth in other forms

Thanks Judith for the information. A lot of people have to avoid salicylates, so that's important.

I don't know if it bothers me or not, but I will keep that in mind. In general, I can't take much for pain, but I do use the topical aspirin creams. I used to think I took a lot of enzymes (7 times per day), till I read Klutzo's story!

Thanks for looking into alternate ways to take bismuth. I meant to look on the internet, but am in one of those stages where I can't remember what I'm doing from one minute to the next. Just glad I'm awake enough to be on here.

Good luck at the doctor.

Kelly

Bismacine

Hi Kelly,
Thanks for the kind words. I'll make a note to check out the personal statements section. The profile was no biggie and only took just a couple of minutes.

I ran a Fibro support group for ten years, but since I got the Lyme diagnosis, have not paid enough attention to research in FMS and CFS, which is moving along at breakneck speed compared to the snail's pace of Lyme research, which is mostly for use in biowarfare. Since I think we are usually talking about the same set of symptoms symptoms, I am interested in catching up.

I am glad the Pepto Bismol made your tummy feel better. Judith is quite right that if you are allergic to aspirin it is a no-no. One other thing to think about is not to use it more often than needed since bismuth is a metal, and none of us want to add a lot to our metal load. I don't know if it is all eliminated or if it hangs around in the body. Also, because it turns stool black, it would hide any bleeding that might be going on, so breaks are a good idea to see if it goes back to normal color. It can also cause constipation, so be aware....lucky for me, I love prunes!

I did the guaifenessin protocol very strictly for ten months with no results except that I discovered that if I took the maximum dose of guaifenessin at the start of a cold I could prevent it from going into my chest like it always used to. That always worked until I got apnea and had to start using a CPAP machine. Those darn machines are infamous for sending all colds into your chest in less than 24 hours, and even the guaifenessin did not work.

What I wanted to bring up in this post is Bismacine, which is an intravenous form of bismuth supposedly able to cure Lyme. Have you already heard of it? Patients are traveling to Mexico to get it. Intravenously is apparently the only way it's at all safe.

One Lyme doctor in Kansas made the mistake of injecting Bismacine into two patients. One is now on dialysis and one is in a coma! And, of course, he is in big trouble.

As to how many of CFS/FMS patients have Lyme, I've seen many different figures, ranging from 83% to 95%, depending upon the study. I used to believe my Lyme caused my FMS and CFS, which is definitely the prevailing view on the Lyme forums, but various things that have happened and that I've learned have caused me to change my mind. I now believe I was born with FMS, got CFS in 1986, which is what knocked me out of the work force, and then got Lyme many years later at the same time our dog got it.

As for the 600 pills, that is just the prescription enzymes! I take about 200 other pills and at least 900 supplement pills per month. My husband says I should not need to eat anymore with all those supplements!

Have a good night,
klutzo

Antibiotics & Lyme

Klutzo--I've only taken six weeks of "low dose" doxycycline. I can't do the antibiotics--bad systemic yeast.

Cipro does kill lyme and so do other floroquinolones. You can find this on pubmed abstracts. I am pretty convinced it does because when I had to take it for a few days for cystitis my lyme symptoms improved. They also improve on amoxicillin. Doxycycline didn't do too much for me sadly.

adsorption of bismuth

Just read through this thread and I am considering trying a cycle of the old pink stuff if I can tolerate it. The mention of adsorption did make me curious enough to poke around a bit and I found this - not bismuth subsalicylate but still an oral med containing bismuth. Don't know that this would stop me from trying a short course of pepto. It would more likely depend on if I have a salicylate reaction.

http://cat.inist.fr/?aModele=afficheN&cpsidt=3639315

Titre du document / Document title
Gastric persorption of bismuth from ranitidine bismuth citrate

Auteur(s) / Author(s)
FRASER A. G. (1) ; LEWIN J. F. ; POUNDER R. E. (1) ;

Affiliation(s) du ou des auteurs / Author(s) Affiliation(s)
(1) Royal free hosp. school medicine, univ. dep. medicine, London NW3 2QG, ROYAUME-UNI

Rsum / Abstract
Aim : To determine whether bismuth penetrates the gastric mucosa after dosing with ranitidine bismuth citrate.

Methods : Twelve patients presenting with dyspepsia were randomized to receive either ranitidine bismuth citrate or placebo, 20-40 min prior to endoscopy. Biopsies were taken from four sites during endoscopy : the first and second parts of the duodenum, the antrum, and the body of the stomach. Biopsies were analysed by electron microscopy and X-ray microanalysis. Results : Bismuth particles were found to be interposed between epithelial cells in the antral mucosa of three of eight patients who were dosed with ranitidine bismuth citrate. Columns of bismuth particles could be tracked down the lamina propria and were seen to be surrounding blood vessels. Bismuth particles were observed in the inter- and intra-cellular channels of the endothelial cells of the blood vessels in the lamina propria and also close to the luminal surface of the endothelial cell. This process of persorption was similar to that described in a previous report of electron microscopy appearances of the gastric antrum after dosing with tripotassium dicitrato bismuthate, but was quantifiably smaller and not observed in all the patients dosed with ranitidine bismuth citrate. No penetration of the mucosa by bismuth particles was seen in the body of the stomach or the duodenum.

Conclusion : Penetration of bismuth particles into the gastric mucosa may occur after oral dosing with ranitidine bismuth citrate.

Revue / Journal Title
Alimentary pharmacology & therapeutics ISSN 0269-2813

Source / Source
1995, vol. 9, no4, pp. 447-450 (15 ref.)

Langue / Language
Anglais

Editeur / Publisher
Blackwell, Oxford, ROYAUME-UNI (1987) (Revue)

I tried Avemar for a couple weeks and it did bother me a bit, making me feel sick to the stomach. It seemed like it just sat in my stomach and didn't digest, even over an hour later (and the packaging says you can eat an hour after taking it so it seems it is not supposed to take that long).