Mystery unfolding and going with nuclear protocol!

Zizzle · Post by **Zizzle** » Mon Mar 24, 2014 10:15 pm

I had my follow-up with my integrative medicine doc today. He had the results of my Organic Acids urine test, which suggested I have yeast AND bacterial overgrowth. The bacteria are clostridia, but not necessarily the well-known C.Diff. Apparently there are hundreds of species of clostridia. The results may also explain my tremor. It seems the byproducts of these bacteria are responsible for preventing enzymes from converting some of my neurotransmitters. I had a high HVA/VMA ratio, which means my dopamine is high and is not being converted into norepinephrine and epinephrine. I have no clue what this means, which is why you need a doc to interpret this test. Possible causes include Vit C and copper deficiency AND/OR clostridia. Interestingly, my Vit C was zero...not good (and I thought I was eating tons of citrus then). I'm taking ascorbate crystals now.

I've had autonomic nervous system dysfunction for most of my life...tremor, low BP, low pulse, motion sickness, palpitations, postural hypotention, etc. Imagine if this is the cause?

Anyway, the treatment is...cringe...Vancomycin antibiotic for 2 weeks and Nystatin for a couple of months! At first I freaked out about the high potency of Vancomycin, until I learned the activity of the oral version is limited to the gut. It's used to treat C.Diff diarrhea.

Vancomycin is an antibiotic used to treat a severe intestinal condition known as Clostridium difficile-associated diarrhea. This condition usually occurs after the use of another antibiotic, which allows the growth of resistant bacteria in the intestines, leading to severe diarrhea. When vancomycin is given by mouth, it is not absorbed by the body but remains in the intestines, allowing it to stop the growth of the bacteria responsible for this form of colitis.
This antibiotic treats only bacterial infections of the intestines. It will not work for other bacterial infections or viral infections.

Phew. Of course, it'll probably re-awaken my MC...or banish it for good. We'll see...
I also wondered why Nystatin instead of Dliflucan. He said Nystatin is actually safer because it's not processed by the liver the way Diflucan is.

I am also to take NAC and Liposomal Glutathione to assist with the detox/die off process. And also a potent bifidus-heavy probiotic: Therbiotic Complete.

He told me to stay at my 4.5 mg dose of LDN, as it is clearly helping with negligible side effects.

I'm nervous to start this protocol, since I'm feeling so well lately...why rock the boat? Then again, I know LDN is not a cure. It only suppresses inflammation. This protocol might be the gut/immune system shake up I've been longing for.

One issue...I haven't told my rheumatologist that I'm seeing my integrative medicine doc again. I decided to come clean and told the doctor's office to send my rhuemy a report of my last 2 visits. I'm scheduled to see him next Friday. I wonder if he'll fire me as a patient bc he doesn't want to be responsible?? Frankly, I wouldn't care. He has nothing to offer me at this point. So long as my other docs are willing to prescribe my remaining prednisone and plaquenil, I'll be fine. I'll be at NIH in 2 weeks with the real experts!

Scary but hopeful time!!

Zizzle · Post by **Zizzle** » Mon Mar 24, 2014 11:24 pm

This seems to sum up my doctor's beliefs regarding dysbiosis:

http://drweyrich.weyrich.com/disorders/dysbiosis.html

Polly · Post by **Polly** » Tue Mar 25, 2014 7:51 am

Oh WOW, Z.!

If it were me, I'd think long and hard about that nuclear protocol. Especially if the urine test only "suggested" yeast and bacterial overgrowth. And since your MC has been in good control recently.

I am wondering why you feel reassured that vancomycin activity is limited mainly to the gut. IMHO that is exactly where it can do the most damage, wiping out the beneficial bacteria that you have been working so hard to preserve and increase for so long. If you actually had C. difficile, then you may not have a choice about the nuclear option. However, as you said, there are innumerable Clostridia species that live in the gut.......I would argue that many are undoubtedly beneficial in some way. Vancomycin is potent, as you say, and would likely wipe out those good Clostridia as well as many other beneficial bacteria.

Also, since your vitamin C was low, it might be worthwhile to wait and see if things improve once you get your level up.

At this point in time, we just don't know enough about the populations of bacteria in the gut and their functions. Also, using a probiotic during the nuclear option would not reassure me. As far as I know, there is no reliable evidence that this helps.
I know we recommend it routinely when taking antibiotics, but I am yet to be convinced of its value. Of course, I am one whose MC gets worse on probiotics, so I am not a big probiotic supporter to begin with.

Just my opinion. I will be interested to see what you decide to do.

Re your autonomic problems, do you have actual P.O.T.S.? IOW, do your pulse and blood pressure drop dramatically when you go from sitting to standing?

Love,

Polly

Zizzle · Post by **Zizzle** » Tue Mar 25, 2014 8:43 am

I know Polly, I'm getting really nervous now. On the one hand, I am a true believer that many people have autoimmune problems because of yeast and/or bacterial overgrowth, and I wonder if this is the only true way to get a handle on it. SIBO seems to be epidemic, and people toil away with diets etc, without addressing the root problems...and they don't get better. I don't want to keep wasting my time plugging leaks in a sinking boat.
Then again, I am so much better now with LDN. I know my decade of birth control pills, lots of antibiotics for UTIs, and then the last year of steroids make me a prime candidate for yeast overgrowth, and I really do want to take the Nystatin. But if I kill off all the yeast, won't that invite the bacteria to proliferate even more??

I'm so confused. To top it all off, my doctor is converting to a membership model after his book is published next week. He will only continue to work with the first 200 patients who pay the membership fee. I did not ask how much it is, but my hunch is I'll be transferring to another doc in his practice. He is so confident. He says his patients have had great success with this protocol, and he deals with really sick people.

I might wait to see my rheumy next week, just to get his opinion. I doubt he'll accuse a highly respected doc around here of quackery, but who knows.

I have a friend who's gone the alternative route for years in treating her daughter's autism. She's been on this protocol and then some. It certainly didn't make her worse.

No matter what, I do plan to take the Nystatin. Question is, can I take it alone and wait on the Vancomycin?

Regarding POTS, I've never had a tilt-table test to confirm it, but my doctor said I have it and it seems to flare at times. He once had me drink sea water supplements and it helped get me out of the "flare." Prednisone has helped control the BP symptoms. An article just came out claiming POTS is autoimmune mediated, so that makes sense. But I'd say I have a mild case. Mild case of everything in fact! MC, DM, EDS, POTS, yeast overgrowth -- all mild! What does that mean? My good genetics are trying to keep things in balance?

Zizzle · Post by **Zizzle** » Tue Mar 25, 2014 8:45 am

Here's my doctor's latest article in Prevention Magazine. He's a medical cowboy it seems...

http://www.prevention.com/health/health ... depression#

Polly · Post by **Polly** » Tue Mar 25, 2014 10:08 am

Hi Z.,

I have to say that you amaze me with your ability to leave no stone unturned in your quest for health! You truly are a detective extraordinaire.

A question: is there any evidence for what comes first - the chicken or the egg? IOW, what evidence is there to support the idea that the bacterial/yeast overgrowth cause autoimmune disease, as opposed to the idea that they are the result or end-product of underlying AI disease?

My thought is that there are probably more underlying causes of AI disease than we can begin to imagine, and that we may never find a single unifying cause for all or most AI disease.......that it is a particular combination of factors that is responsible for each individual's AI disease - genes, toxins/drugs, infectious diseases, individual biomes, hormones, antibiotics, diet, lifestyle changes like less exposure to pathogens because of improved hygiene, etc. As a result, I don't believe there is a "one size fits all" or "magic bullet" treatment. That's why I like to envision that one day, at birth, a newborn will have a genome done that will help guide them to make the appropriate choices to optimize health. And also why I am always suspicious of any practitioner who advocates "one size fits all" solutions (or who wants to sell you his special herbs/supplements).

It may be that you will never find a single unifying cause for all of your health issues (other than genetic propensity for AI perhaps), although it would sure be great if you did. Re the POTS, at least one other MCer here had it - Tessa from Spain. She found improvement by eating salt too. But here case was much more severe, I believe.

BTW, I would want to know how many patients with MC that your doc has successfully treated using the nuclear option.

Polly

Post by **tex** » Tue Mar 25, 2014 10:28 am

Zizzle,

I agree with Polly 100 %. Vancomycin is not the only medication used to treat C. diff. It is the one used to treat antibiotic-resistant C. diff, when metronidazole doesn't get the job done. Using vancomycin when it's not necessary, simply adds to the long-term risk of enabling additional strains of C. diff to develop antibiotic resistance. But when C. diff bacteria become resistant to vancomycin, there are no more antibiotics in the supply cabinet to fall back on — vancomycin is all we have.

Besides, if you actually had a C. diff problem, you would be virtually living in the bathroom, and you would have excruciating abdominal pain. If that's the case, I missed it in your description. Yes, I realize that he's suggesting that other Clostridium strains might be a problem. But how could they be a problem, without typical Clostridium symptoms? After all, a problem that is invisible (free of symptoms), is not a problem, except on an academic level.

Everybody has yeast. It only becomes a problem if we kill off all the competition and thereby establish an environment where it can thrive (which vancomycin would certainly do). Do you even have thrush? If you don't, it's highly unlikely that a yeast overgrowth has become a major problem.

When you've finally found something that actually seems to be working (LDN), and things are starting to go your way, it seems rather capricious to just throw caution to the wind, and jump into a potent (highly-questionable) long-term treatment regimen that might possibly be beneficial, or it might just as easily knock you back to square one, and add a few more adverse health issues to your existing list.

Maybe it's just me, but it strikes me that your IM doc may be becoming a bit "too big for his britches", as our parents used to say. Requiring his patients to buy into a "Sam's Club type" membership in order to qualify for treatment, suggests that he feels that he has become a legend in his own mind.

Tex

P. S. Regarding Polly's suggestion that gut bacterial imbalance is a result of IBDs and other autoimmune-type issues: you may recall that I have long insisted that to be the most likely scenario, rather than dysbosis being the cause of IBD/AI syndromes. Doctors who fail to recognize that, tend to continue to treat the symptoms, rather than to treat the cause of disease, despite their claims to the contrary.

Zizzle · Post by **Zizzle** » Tue Mar 25, 2014 10:55 am

Tex,
He's not suggesting I have C.diff, just other forms of clostridia which he believes do all sorts of bodily harm. Regarding yeast, I've only had one overt yeast infection my whole life...when I was a teen. But I've had OB/GYNs point out yeast to me (even though there was not an obvious infection). I've never been a dessert person, but boy does my body gravitate towards starches and sweets. Of course if I have yeast overgrowth, it probably means 90% of Americans do too, so it doesn't explain why I have MC and DM and others don't.

My doctor treats lots of patients with celiac, but we haven't discussed whether many of his patients have MC.

I'm going to reach out to the MD at NIH and ask if my starting such a protocol would affect their testing, which should buy me some time to figure this out. I also plan to discuss it with my rheumy.

gluten · Post by **gluten** » Tue Mar 25, 2014 12:16 pm

Hi Zizzle, Several weeks ago I posted a report about two women with MC that had a species of Clostridia was found in the stools. There are over a hundred different species. Research also shows that bacterias in bioflims are responsibe for stopping or creating enzymes. These bacterias may effect the neurons as shown in ALS with the bacteria from Lyme disease. Copper deficiency has been linked to cause a decrease in diamine oxidase, the enzyme that will lower histamine. Jon

JLH · Post by **JLH** » Tue Mar 25, 2014 12:37 pm

Did you share this with your friend? http://therashreality.com/2013/12/01/re ... tts-story/
I know everyone is different......

Zizzle · Post by **Zizzle** » Tue Mar 25, 2014 1:04 pm

Jon,
Here's the full text of the article you cited about 2 CC patients. Clostridia is suggested as a factor, but it's certainly not a slam dunk.

http://www.wjgnet.com/1007-9327/full/v18/i14/1628.htm

gluten · Post by **gluten** » Tue Mar 25, 2014 1:16 pm

Hi Zizzle, The other item to consider is the toxins these bacteria produce? Jon

Leah · Post by **Leah** » Tue Mar 25, 2014 1:29 pm

Z, I know this is such a personal decision, and I would totally understand wanting to try something "big" If I was feeling awful …. but you said that you are feeling pretty well on the LDN. Why not just feel pretty good for a while and see what happens? You can always "go nuclear" down the road.

Leah

Zizzle · Post by **Zizzle** » Tue Mar 25, 2014 2:05 pm

I agree with you Leah, I'm struggling with this option considering how good I feel. I'm going to consult with my new NIH researcher/doctors, and my rheumatologist before I do anything. I realize I may be jeopardizing my hard-won MC remission with this option, but then again, I enjoy complete remission when I'm on other antibiotics...

First I need to find out if my insurance will even cover the oral Vanco. Doc says it can cost $1200, in which case they might need to compound it for me from the liquid form. That would certainly extend the decision-making process.

I plan to go ahead with the Nystatin for yeast overgrowth, after I'm seen at NIH. I know several people with DM with major yeast overgrowth issues. Of course it may be immune suppression that led to theirs, but who knows if its a factor in the disease etiology? Candida certainly causes leaky gut, and I have a gut that just won't seal, even on the strictest diet (AIP).

Post by **tex** » Tue Mar 25, 2014 8:30 pm

Zizzle wrote:and I have a gut that just won't seal, even on the strictest diet (AIP).

Please forgive me, because I don't mean to be facetious, or cruel, but the main reason why your leaky gut won't seal, or heal, is because you violate your diet on an almost daily basis. Good intentions in and of themselves, are not sufficient, where diets are involved. Strict diets are actually only strict if they are strictly executed at all times (not just when it's convenient).

Tex