Rash/Lesion Start Up From Methylation Protocols

[LaurieL]

Freddd,

In addition to increased B-hydroxyisovalerate, elevations of lactate and alanine in urine and accumulations of odd chain fatty acids in plasma or red blood cell membranes have also been found in biotin deficiency.

And so it is here that I might find a connection to the hyperammonia? It isn't my urine in which I can smell the ammonia, but in my tears and sometimes off my skin.

Shellbell,

When I went down initially around that six year mark, I went down very hard. At that time, I knew I had issues in which a regular doc couldn't address, and so I sought the help of an environmental toxicologist. I was in a cytokine storm and so very sick.

His protocol was so similar to what is being done here with the exception of the active b's and methylfolate, or in Rich Vank's protocol, the use of hydroxy and folinic acid. So many of the cofactors needed for methylation, I had already been doing for quite sometime. With that in mind...

Where I started I am reticent to promote anyone else starting where I did. I believe because I had most of the cofactors already in place, is what allowed me to start where I did. There are many here, without those cofactors in place that can only tolerate small minute amounts for startup. It took three to four months to work out my effective dose of Ad B12, which seems to sit at a rather high dosage per day, not weekly. And that dosage is 30mcg minimum for equilibrium. Anything less, and my fatigue and overall well being go down the toilet.

I also take a similar dose of methyl B12 ranging from 40 to 50mcg. Thats per day, and that is a minimum dose. I know I should look into shots, but I just don't have that avenue available to me.

I also seemed to have attained an equillibrium with methylfolate. That dose being quite high as well at 8000 per day.

I have only been doing this since October, and I really believe the difference between me and most here, is that for quite sometime, I had already been supplementing many of the recommended cofactors.

Please be very cautious in trying to compare to my particular case. My story seems to be quite different from many here. Low and slow.

Laurie

 

[Shellbell]

Thanks Laurie. Your story sounds like mine. I would love to know more. I will email you privately as I don't want to hijack this thread.

Shelly

 

[LaurieL]

ShellBell,

I find it heartening to hear of someone with similar experiences. Am very interested in your story. Look forward to hearing from you.

Joopiter76,

With Biotin at the levels we discussed, I seemed to have had an improvement with muscle pain. Quite noticable when I exclude biotin from a daily dose, and also noticable with the d-biotin. In addition to The B Right that I take twice a day, I take additional Biotin @ 20mgs. The amount in the B Right is 300mcg, so I am still shy of the 30mg suggested in the clinical laboratory findings of the Metametrix Lab and hovering over the 25 mg mark in which was associated with the return of the dermatitis. Since I have no official lab reports, my experience has been purely subjective and could be completely wrong. All I can do is the pragmatic approach, and observe.

And of course the observations of my skin, hair and nails. Makes quite a difference in those arenas. Nails cease to split, skin not quite as dry, hair more manageable, less rash.

Look on the back of the bottle of your biotin, if it states Biotin as d-biotin, then it is laboratory made. I have heard from a few others concerning d-biotin and their experiences with it as well. Quite similar to my own and that was the experience of nausea, headaches, bodyaches, and a return of symptoms. Just an FYI, again, my experience has been subjective.

Incidently, in previous lab reports, my CO2 levels were sky high, which is associated with carboxylase disorders and biotin deficiency. Also interestingly enough, part of that Toxicologists protocol was higher doses of B5, in which can also bind biotin.

What I am experiencing is that pretty much any and all of the B vitamins in addition to the active b12's and methylfolate have been incremental in the strides I have attained in the last six months as compared with the last six years.

Laurie

 

[LaurieL]

More on the Ad B12. Only with these higher daily doses am I able to keep angular cheliosis and oral thrush at bay. I know chronic candidiasis and thrush can be quite chronic when methylation is blocked, and in organic acidemias.

Could this ongoing, unresponsive candidiasis and thrush be part of the reason my body demands so much Ad B12?

Laurie

 

[Joopiter76]

I can tell you that I know the candida problem on the skin very well, but since the last 3-4 months I didnt have this problem anymore, but its winter (usually I have this in sommer) Since I got ill almost 2 years ago I had this problem all the time when candida was beaten it cam back 4 weeks later grrrrr. The problem is inside.

 

[Freddd]

More on the Ad B12. Only with these higher daily doses am I able to keep angular cheliosis and oral thrush at bay. I know chronic candidiasis and thrush can be quite chronic when methylation is blocked, and in organic acidemias.

Could this ongoing, unresponsive candidiasis and thrush be part of the reason my body demands so much Ad B12?

Laurie

Hi Laurel,

Boy has this thread jumped ahead in a couple of days. I'll work my way back through the posts but I wanted to address this dosage adb12 issue. There are two different adb12 "energy" deficiency issues. There are the body/muscle issues and there are the CNS mitochondrial issues. The CNS issues affect personality, mood, perceived energy and things of that sort. There are also a pair of mb12 deficiencies, body and CNS. Some people have difficulty getting or retaining adb12 and/or mb12 into the CSF/CNS. The mb12 and adb12 CNS/CSF deficiency appears to be two separate issues. Those with CFS/FMS have been found to have low CNS/CSF "cobalamin" unspecified so it could be either or both. Research and experience indicates that it takes a larger dose to penetrate the CNS/CSF for some people than for others. This appears to be what you are experiencing. You are by no means the only one. When I am not injecting 10mg of mb12 so I can't time sublingual to diffuse with the injection, I need a 51mg dose of adb12 at least once a week. More often doesn't make a difference for me. Some people are taking large doses every day to banish brainfog and mood and personality changes.

Adb12 itself does not contribute to methylation, mb12 and methylfolate do. methylfolate appears to aid the effectiveness of both kinds of active b12. I take 2400mcg of Metafolin with each dose of mb12/adb12 I take for best effectiveness.

 

[Freddd]

Freddd,



And so it is here that I might find a connection to the hyperammonia? It isn't my urine in which I can smell the ammonia, but in my tears and sometimes off my skin.

Shellbell,

When I went down initially around that six year mark, I went down very hard. At that time, I knew I had issues in which a regular doc couldn't address, and so I sought the help of an environmental toxicologist. I was in a cytokine storm and so very sick.

His protocol was so similar to what is being done here with the exception of the active b's and methylfolate, or in Rich Vank's protocol, the use of hydroxy and folinic acid. So many of the cofactors needed for methylation, I had already been doing for quite sometime. With that in mind...

Where I started I am reticent to promote anyone else starting where I did. I believe because I had most of the cofactors already in place, is what allowed me to start where I did. There are many here, without those cofactors in place that can only tolerate small minute amounts for startup. It took three to four months to work out my effective dose of Ad B12, which seems to sit at a rather high dosage per day, not weekly. And that dosage is 30mcg minimum for equilibrium. Anything less, and my fatigue and overall well being go down the toilet.

I also take a similar dose of methyl B12 ranging from 40 to 50mcg. Thats per day, and that is a minimum dose. I know I should look into shots, but I just don't have that avenue available to me.

I also seemed to have attained an equillibrium with methylfolate. That dose being quite high as well at 8000 per day.

I have only been doing this since October, and I really believe the difference between me and most here, is that for quite sometime, I had already been supplementing many of the recommended cofactors.

Please be very cautious in trying to compare to my particular case. My story seems to be quite different from many here. Low and slow.

Laurie

Hi Laurie,

I find that if I combine the doses of adb12 and mb12 I can take less of each at the same time as long as the total is high enough to diffuse into the CNS/CSF. You clearly appear to have this restricted inflow to the CNS/CSF also. I am currently taking 27mg a day of the adb12 in addition to the mb12. I find that a certain balance between the two active b12s and metafolin works best. I think that is what you have found too.

I couldn't begin to answer anything about ammonia. I just don't have that knowledge.

 

[LaurieL]

Freddd,

I can't tell you how much it means to me personally to have your input and wanted to say thank you. I really needed to hear that I am not the only one. I was beginning to feel that way because of the crazy high doses I seem to need and react so adversely without.

Laurie

 

[LaurieL]

Rich VanK

Rich,

Could you walk me through the glutamate, histidine, and diamine oxidase connections?

Laurie

 

[Freddd]

Just a thought on rashes. Some people have a burst of Rosacea when starting some supplements.

 

[LaurieL]

Histamine and histamine intolerance.
Maintz L, Novak N.

Department of Dermatology, University of Bonn, Bonn, Germany.

Abstract
Histamine intolerance results from a disequilibrium of accumulated histamine and the capacity for histamine degradation. Histamine is a biogenic amine that occurs to various degrees in many foods. In healthy persons, dietary histamine can be rapidly detoxified by amine oxidases, whereas persons with low amine oxidase activity are at risk of histamine toxicity.

Diamine oxidase (DAO) is the main enzyme for the metabolism of ingested histamine. It has been proposed that DAO, when functioning as a secretory protein, may be responsible for scavenging extracellular histamine after mediator release.

Conversely, histamine N-methyltransferase, the other important enzyme inactivating histamine, is a cytosolic protein that can convert histamine only in the intracellular space of cells.

An impaired histamine degradation based on reduced DAO activity and the resulting histamine excess may cause numerous symptoms mimicking an allergic reaction. The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.....

I also read a study in porcine subjects of which 50% were found to have a DOA blockade and subsequent mild to very severe reactions to histamine introduced in the study. This particular study was done to determine the effect of histamine foods in diet and its causal/effect relation to diet.

I also read in another source that 20% of the US population is currently using pharma in which are direct DOA inhibitors and there for DOA inhibition and their corresponding eating habits would have a signifigant effects on their health.

DOA is also found in the intestines. I believe what may apply to my situation is that I most definately have an intestinal dysbiosis, leaky gut, altered fauna thing going on.

Which also correlates to why I am so deficient and responsive to the many B's and cofactor supportives as well. This seems to make good sense that my problem may lie here and deserves more consideration on my part. I didn't realize the importance, but it would seem as I learn a bit more, its making better sense to me.

How would one address this specifically besides the antihistamine diet? I saw that they have a supplemental DOA made from porcine. I wonder if supplementing this directly would be helpful? I have taken antihistamines before and they were only mildly helpful. They only bind the receptor sites, and do nothing to take it out of blood serum or cytosol compartments. Also, antihistamines are receptor specific, and I read they have recently identified another receptor called H4 in histaminosis sufferers.

Rich, I know I asked earlier, but I sure would appreciate a pathway associated with this. I have been looking at the DOA pathway images, and I am having trouble tying in the points.

Laurie

 

[Joopiter76]

Hi Laurie,

I think your histamine problem is a methylation problem. If histidine builds up this could lead to a higher synthesis of histamine and also you need proper methylation to break down histamine. I have had very good experiences with using butyrate for my gut as well as sacharomyces boulardii and theralac (this is really top!). Butyrate is th main energy source of the gut and the fat synthesis is diminished in CFS. So the gut has no energy and the tight junctions will be more open and histamine can defuse inside without getting in contact with DAO.

 

[LaurieL]

Geesh, I needed some details and thank you very much for yours. I had read some on Butyrate but was unsure of its use. I have been shy with the probiotics because I didn't want to make a bad situation any worse.

I was wanting to have the stool test done by the Yasko lab, but I am unsure as to how to get that done, and if it can be done without a doc order.

Yes, the tight junctions!! I have been struggling with this specific issues for years now. Makes sense!!

Laurie

 

[Joopiter76]

you can do all test without a doc hrough Yasko. I mean as shes giving advice why shold one ask a doc who doesnt have her knowledge. Make sure that the butyrate product has about 200mg butyrate (the rest is usually calcium and magnesium) because there are also products with less butyrate in it.

 

[LaurieL]

My thanks again.

And I now understand why one would take butyrate with probiotics. I have been able to find information stating that it helps with the adherence of acidophilus and lactobacillus to the intestinal wall promoting the growth of the good guys.

See, its lack of these particulars that keep me from doing probiotics. Yes, I will investigate some products and look for the 200mg of butyrate. Are there any products without calcium?

I found it interesting that butyrate is generated from the breakdown of parmesan cheese and butter. Two things I seem to have cravings for. Also Kombachia Tea.

Thanks for some additional avenues and your input.

Laurie

 

[Joopiter76]

http://www.drugnatural.com/p/135032
http://www.healthdesigns.com/nutricology-butyraid-100-tablets.html
http://www.healthdesigns.com/allergy-research-group-butyren-100-tablets.html

these are the ones I found, they all have 200mg butyrate and 600mg calcium magnesium butyrate. Yes they all have calcium. I dont take the full dosage which is 6 caps. I took three for some months an now 2.

there is a significant difference between theralac and other probiotics even if they contain the same amount of probiotics. I tested some. Theralac really makes a difference.

 

[Freddd]

Very interesting. I have always been hypersensitive to this odor.



http://en.wikipedia.org/wiki/Butyric_acid
Butyric acid function/activity

Highly-fermentable fiber residues, like resistant starch, oat bran, and pectin are transformed by colonic bacteria into short-chain fatty acids including butyrate. One study found that resistant starch consistently produces more butyrate than other types of dietary fiber.[7]
The role of butyrate changes depending on its role in cancer or normal cells. This is known as the "butyrate paradox". Butyrate inhibits colonic tumor cells, and promotes healthy colonic epithelial cells;[8] but the signaling mechanism is not well understood.[9] A review suggested that the chemopreventive benefits of butanoate depend in part on amount, time of exposure with respect to the tumorigenic process, and the type of fat in the diet.[10] Low carbohydrate, low fiber diets like the Atkins diet are known to reduce the amount of butyrate produced in the colon.[citation needed]
Butyric acid can act as an HDAC inhibitor, inhibiting the function of histone deacetylase enzymes, thereby favoring an acetylated state of histones in the cell. Acetylated histones have a lower affinity for DNA than non-acetylated histones, due to the neutralization of electrostatic charge interactions. In general, it is thought that transcription factors will be unable to access regions where histones are tightly associated with DNA (i.e. non-acetylated, e.g., heterochromatin). Therefore, it is thought that butyric acid enhances the transcriptional activity at promoters, which are typically silenced or downregulated due to histone deacetylase activity.
Two HDAC inhibitors, sodium butyrate (NaB) and trichostatin A (TSA), increase lifespan in experimental animals.[11]

 

[LaurieL]

My thanks again Joopiter76. I will keep your recomendations in mind when making my decisions. Very much appreciated.

Freddd, I did read that link while I was searching for information on butyrate. What is really interesting is I have used apple pectin fiber extensively in my detox efforts in the recent past. Not quite so much since starting the methylation sup's in your protocol. I was looking to replace cholesteramine with a natural product and I not only have I found it to be a potent toxin transporter, perhaps it was also helpful in the butyrate department.

I did a search on the forum for diamine oxidase and ran across a post from a memeber here in a thread I also felt pertinent to cross reference here. It explains histamine and the connection to irratability and rage I joked about as being "Sybil" like. I also used to joke that if Sybil had twelve known personalities, that I had at least twenty idenitifable ones and she was just a babe in the woods......

Athene
Join Date:Nov 2009
Posts:594 Histamine

Hiya,
The reason we have all this histamine is twofold.
We have skewed immune systems that are prone to developing allergies (especially IgG ones).
We have broken methylation cycles, and methylation is one of the two ways the body eliminates old histamine.

The best help is avoiding allergens. For me a food allergy test was a great help but I also had to make my husband de-mould the house and I have a cleaning lady who carries out major dustmite removal sessions for me. You need to hide while other people help ou with this, otherwise it just gets worse if you try to do it yourself. There are also certain foods that either contain histamine themselves, or provoke it in everyone, regardless of whether they are allergic to that food or not. (cheese, wine, oranges, various fruits, it's a long list.) When I can get the data form my old dead computer I'll dig up a link to an excellent article about it.

The get rid of the excess, our other natural method is the enzyme diamine oxidase, which you can buy in tablet form (called Daosin) as the body tends to run out. You take it like an antihistamine tablet but it has no side effects at all. There's also no such thing as an overdose.
Also make sure you get plenty of vit B6 and C, as the body needs these to make diamine oxidase.

Finally, when you have these mast cells (= histamine factories) lurking in you, other things can make them degranulate, such as getting too cold or too hot (no hot baths!), estrogen (kind of hard to avoid), traffic fumes and various other things which I am afraid I cannot remember.

This is a bit of a hasty brain dump but if you rummage on google you should be able to fill in some of the gaps. Definitely order that Daosin stuff, it's a lifesaver for me.

And a link to the entire thread....

http://forums.aboutmecfs.org/showth...d-irritablity/page5&highlight=diamine+oxidase

Laurie

 

[LaurieL]

Another interesting post by the same member, and again, seems to correlate with what I experience.

Athene
Join Date:Nov 2009
Posts:594

Another possibility to consider:
My dietician told me you get the munchies when you are full of histamine. It acts upon the stomach and intestine. I used to get up in the night for a huge Scooby snack and eat at least once an hour all through the day as well. I take an antihistamine now and my appetite is completely normal.
I've had severely low blood sugar crises and also low thyroid, but for me this histamine problem had a much stronger effect on my appetite.

http://forums.aboutmecfs.org/showthread.php?4679-Hungry-all-the-time/page2&highlight=diamine+oxidase

Laurie

 

[Joopiter76]

Hello to all,

I tried some fiber procuct with inulin or something like that to feed bacteria but I didnt tolerate it.

Another question I have is if you experience as well a kind of increased nerve sensation, increased "legs falling asleep" 8do you say this in englisch like that?) after raising methl-b12. I have this and I wonder if its good or bad, also I feel that my eyes are like "confused" I cant look as clear as before, something is different. Any suggestions? I think Freddd is expert in this area but everyboy is welcome.