Mystery unfolding and going with nuclear protocol!

Zizzle · Post by **Zizzle** » Thu Apr 03, 2014 8:50 am

It's like my rheumatologist. No matter how many times I bring up my LC, he REFUSUS to talk about it, like it has absolutely no bearing on my DM. I purposely talk about my anti-inflammatory diet, how much it's helped, etc. and he just won't engage on it. Frustrating!!

I'm going to send the NIH doc my Enterolab results. Then he'll really think I'm nuts!

DebE13 · Post by **DebE13** » Fri Apr 04, 2014 6:05 am

Tex, your comments sparked me to reflect a bit on my own strict diet and I've found although I feel it's very limited, it's not -in the framework of MC. Strict compared to the general population- absolutely! There's no way around it, it just plain sucks. A little tomato here, a scoop of PB here, a tad of beans there while continuing to have WD adds up to strict when it's convenient. Insert big pouty lip here. It's hard to call those foods treats but sure are nice once in a while. My once in a while and causing no major change became an everyday occurrence. I've cut it all out again and within two days I can tell it helps. I still have WD but of a better kind, if that makes sense.

Post by **tex** » Fri Apr 04, 2014 10:15 am

Hi Deb,

Great! That's encouraging. I've been in that situation myself a few times, when it dawned on me that something that I had been viewing as a minor inconvenience, was actually more than just a minor inconvenience.

And as you say, it definitely sucks to have to make our diet even more restrictive, but 24x7 quality of life almost always trumps those little moments of indiscretion.

Tex

Zizzle · Post by **Zizzle** » Fri Apr 04, 2014 11:31 am

I saw my rheumatologist today and told him everything I've been up to. The moment I mentioned LDN, he had to look it up on his phone. He seemed to have NO IDEA what is was. How is that possible? I left a couple of handouts with him, and explained the various ways it works to the best of my ability (in less than 60 seconds of course). He said he had spoken to the dermatology expert in DM who saw me in January, and they both agreed I needed more medication. Without prompting, he admitted there is little data to suggest any of the medications they are offering (methotrexate or Cellcept) will have any positive effect on the rash. I told him I agreed with their assessment, and that's why I went on LDN, because in the absence of evidence, I'd rather choose an option without adverse side effects. He understood my viewpoint, said he would continue to support me, but reiterated that he prefer I go on his meds.

He was pleased to hear I got myself accepted into an NIH study, and he asked me to request all my records, since they rarely communicate back to the patients' doctors.

I told him about my BP issues, and he was quick to try and blame LDN, despite my lifelong history of dealing with this. Luckily, my BP was 100/60 in his office, so I told him my fluid and salt regimen seem to be working.

I told him about the Organic Acids Test, my intention to start Nystatin, and my intention to decline Vancomycin. He seemed supportive of the yeast overgrowth diagnosis, surprisingly. He was not at all interested in seeing the results, even though I said they may explain some of my issues with dysautonomia (which he could care less about), but I left him a copy anyway, suggesting he may glean something useful from it with his medical expertise.

He seemed defeated, as though there was nothing more he could do for me. He asked about bloodwork, and I said why bother when NIH is taking tons of bloodwork in 2 weeks. He agreed. So he gave me medication refills and asked me to come back in 3 months.

Totally uneventful visit, but hopefully he's planning to read up on LDN!

gluten · Post by **gluten** » Fri Apr 04, 2014 11:49 am

Hi Zizzle, I was not surprised at the doctors recommendation to take other drug. Yesterday, I called for information about a health care plan and the sales rep commented that I was first person that does not take a drug. I asked her " What is the average amount of drugs per person" She stated "5 to 10. The max number was 32 and she had to get the name of each for the insurance coverage. Now, I understand why there why there is a pharmacy on three of the four corner intersection. Jon

Post by **tex** » Fri Apr 04, 2014 2:36 pm

Zizzle wrote:He seemed defeated, as though there was nothing more he could do for me.

Small wonder — you're overwhelming the poor guy.

Now he's going to have to learn more about LDN to try to figure out if it might have any effect on autoimmune-type issues.

Tex

Pat · Post by **Pat** » Fri Apr 04, 2014 6:15 pm

Deb,

Good luck with the elimination diet. I know it is very difficult to give up so many things. I struggled for years before I just had to do it. Although I really only have gotten better since going on LDN and I have to throw in thyroid med cause I started them within a week of each other...LDN first. I've watched so many on here get better with diet elimination only and I really wanted to be one of them but I had to resort to medication. Hopefully you can get better with just diet!!! Oh, yeah, I also take Pentasa still. Hopefully I can go off that soon.

Pat

Zizzle · Post by **Zizzle** » Mon May 26, 2014 11:42 pm

The nuclear oral Vancomycin protocol is back in the forefront of my thinking. My digestion has been off ever since I tried to take Nystatin for yeast overgrowth, and I think it's because I have SIBO. My urine test confirmed Clostridia species were at least partly behind my SIBO, and may even be responsible for my bradycardia, tremor and other seemingly unrelated symptoms.

This new research on MS blew me away. My doctor really knows what he's talking about!!

My friend's autistuc daughter has the urine test i had every 6 months and her clostridia byproducts are off the charts!! She takes oral vancomycin regularly and improves with each round. I'm seriously considering the oral Vancomycin prescription that I was too fearful to take. Might start this week!

http://www.sciencedaily.com/releases/20 ... 153940.htm

Gabes-Apg · Post by **Gabes-Apg** » Tue May 27, 2014 12:21 am

zizzle,
my hesitation to this approach is that if any of the issues in your gut are polysaccharide coated, the antiobiotics wont work, and will upset any good microbes and bacteria.

how many rounds are they talking? is your body up to that given the mild chaos of the past 6 months?

gluten · Post by **gluten** » Tue May 27, 2014 8:27 am

Hi Zizzle, Did they find the Clostridia in the urine with the testing that was done during the study? Jon

Zizzle · Post by **Zizzle** » Tue May 27, 2014 8:47 am

Hi Jon,
No, prior to going to NIH, my doctor ordered an Organic Acids urine test from Great Plains Lab. This showed byproducts of clostridia and candida, but not of C. dificile. It also showed my neurotransmitter ratio of dopamine to epinephrine was affected, which apparently is caused by clostridia affecting an important enzyme needed to make the conversion from dopamine to epinephrine/norepinephrine. It may explain my long-standing autonomic nervous system dysfunction!

Zizzle · Post by **Zizzle** » Tue May 27, 2014 8:49 am

my hesitation to this approach is that if any of the issues in your gut are polysaccharide coated, the antiobiotics wont work, and will upset any good microbes and bacteria.

Gabes,
By "polysaccharide coated" are you referring to biofilms? I was given a NAC supplement which is supposed to help break down the biofilms during the treatment and help with general detox/methylation pathways.

Zizzle · Post by **Zizzle** » Tue May 27, 2014 8:54 am

Here's info on C.Perfringens. I can't tell you how many times I've had 24-hour GI bugs without fever or vomiting.

http://www.foodsafety.gov/poisoning/cau ... rfringens/

Post by **tex** » Tue May 27, 2014 10:44 am

Hi Zizzle,

Remember that vancomycin is a powerful broad-spectrum antibiotic that's often used as an antibiotic of last resort. It kills both gram-positive and gram-negative organisms — IOW, virtually everything.

If/when vancomycin becomes ineffective for someone, they have no remaining practical antibiotic options against antibiotic-resistant strains.

I'm not trying to imply that the research is invalid, but from a pragmatic viewpoint, as common as C. perfringens is, if one of its toxins were an important trigger for MS, one would think that MS would be much more common in the general population, because sooner or later, virtually all of us are exposed to it, typically many times, during our lifetime. So apparently, if the toxin is part of the equation, then it is not sufficient by itself, and it probably plays a secondary role to some other factor, in the actual development of MS.

Tex

Zizzle · Post by **Zizzle** » Tue May 27, 2014 2:06 pm

I agree with you Tex, but I happen to think the C.perfringens isn't just a one-time trigger. It must be a permanent inhabitant that fuels the inflammatory process constantly, and if you get into a situation of bacterial overgrowth, then more damage can accrue due to the build up of toxin.

I happen to think I may be battling some exotic form of e.coli, so I welcome that temporary eradication too.