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Simplified Methylation Protocol or Hepapressin?

Messages
86
Hello,

I've got a question that I would love to get some advice on from those who have travelled this road before. I just had an initial phone consult with Dr. Enlander for my 21-year old daughter, who has CFS, FM, POTs, IBS, Adrenal Fatigue and GI issues. The overall call was good, and Dr. Enlander explained the theory that many CFS patients have immune system dysregulation. Specifically, he explained that the immune system is more likely upregulated rather than being weakened, but he did note that CFS patients are a heterogeneous group. Since he believes that the immune system needs to be restored to normal functioning, he recommended Hepapressin (an immune system adjuvant) be given as a first line supplement. He also notes clinical success in starting some patients with Hepapressin first, and then moving on to other therapies like GcMAF/MAF 878, if the patients do not respond to just the Hepapressin.

Dr. Enlander also noted that he worked closely with Rich Van Konynenburg for 12 years until his untimely passing. Dr. Enlander mentioned that in his clinical experience, simply giving a B12 and B6 combo, two extra ingredients in his Hepapressin formulation, will not be enough to improve the immune system, and I suppose, bring methylation back to normal. Interestingly enough, my daughter did have a Methylation Pathways Panel from Health Diagostics Lab in South Amboy, NJ. The medical director of that lab, as well as Dr. Enlander, confirmed that my daughter has folate cycle deficiencies as well as low, reduced glutathione. Thus, this is a direct confirmation that my daughter's methylation cycle is not functioning the way it ought to.

So, here's my question which ties in both the Hepapressin from Dr. Enlander and the Simplified Methylation Protocol (SMP), which Rich proposed. If immune system dysfunction is "at fault", then I would think that simply giving supplements that improve methylation would not help that much. Yet, in Rich's study with Dr. Neil Nathan, they showed that by giving certain forms of folate, B12, lecithin and other supplements, most of thier patients improved. And those that needed further improvement were helped by adding supplements that took into account different people's genetic SNPs. In addition to feeling better, their glutathione levels also increased, despite the fact that these patients were not taking glutathione. To my knowledge, since none of the supplements were directly targeting the immune system, that would imply (at least to me) that a partial methylation block was preventing these folks from getting better. What I did not get a chance to ask Dr. Enlander is how these results can be explained if one believes that the immune system is the system that really needs to be normalized.

I suppose both theories can be true in that for many patients in the RVK study, fixing the methylation cycle allowed the body to make normal levels of reduced glutathione. And, as the body's main antioxidant, this allowed the immune system to get back to normal. But, if this were so, what I also don't know is why one wouldn't start out with the SMP protocol rather than going to injections first. It could be that the SMP helps patients further along, but you need an immune system adjuvant to really get the body back to normal function. So, it could that Dr. Enlander is really trying to be more aggressive than the SMP to potentially get a wider group of CFS well "on the first shot". I really don't know.

If anyone has any thoughts that they can share, I would really appreciate it.

Regards,
Scotty81
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
@Scotty81

I started the SMP in 2007 and was regularly in touch with Rich. I also had a Methylation Profile that showed some pretty severe problems. I did improve, my glutathione rose, but it wasn't "enough." I later began Hepapressin (Nexavir) along with GcMAF and that helped some more but I still had to deal with tick borne infections.

I am continuing with all of it now and though improvement is very slow, I am still getting improvement. I don't know if this is helpful, but it is how it went for me. Also, I don't remember the stats in the Rich/Neil Nathan informal study but I doubt if the protocol solved all the problems for most of the patients involved.

Sushi
 

Valentijn

Senior Member
Messages
15,786
I think the longer term outlook for the patients in that study showed a lot less improvement. So basically methylation helped a bit, but was a long long way from being a cure. I'd trust the expert and take the Hepapressin - I'm on the European version of it currently, started a couple months prior to starting on a ton of antibiotics for a Lyme infection.
 

Helen

Senior Member
Messages
2,243
@Scotty81

If I am not wrong Dr. Neil Nathan had treated infections that he had diagnosed ,and I think also metal overload, before the people with ME were put on a methylation protocol. That should make a huge difference.

Like @Sushi I had a Methylation Pathways Panel before I started a methylation protocol supervised by Rich via e-mails. I had been on MeCbl injections for 15 years but not on methylfolate. Crucial results were below reference ranges. After a year the results were higher but still not normal. Later I was diagnosed with Lyme. I assume the Lyme infection "consumes" glutathione as long as it is not treated properly.
 

brenda

Senior Member
Messages
2,270
Location
UK
@Scotty81

I see that your daughter has adrenal insufficiency and therefore may have a chance that she is sub clinically hypothyroid. Has it been checked and what are her results if you don't mind posting them (or send them pm). I am finding out for myself that the thyroid and adrenals are the first thing to fix. If one has a slowed metabolisim due to hypothyroidism (often missed) then reving up the system with methylation treatment will stress the adrenals. This is just my opinion and not one I have references for and what I think is going on for me. I don't think a lot of doctors are knowledgeable enough to be able to sort this out and most endos are not up to date. Diet has to be the starting point in treating adrenals.

http://tpauk.com/forum/content.php?1365-TSH-REFERENCES
 
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Helen

Senior Member
Messages
2,243
I think the longer term outlook for the patients in that study showed a lot less improvement. So basically methylation helped a bit, but was a long long way from being a cure.

I think it is important to get this right, so I checked up what Rich actually presented on easy-to read- pages (the slides) from his video recorded talk 2011 in Sweden. I didn´t interpret the results like you, on the contrary, but maybe I missed something?

I am well aware of, like Rich pointed out, that this is only a clinical study FWIW, but I think the results and his hypothesis are worth a follow up in a scientifically performed trial.

@Scotty81 It is described in the report from the clinical study how Dr. Nathan also used other treatments before the study, and after 6 months which further helped some participants. In my opinion I don´t think it is about a methylation protocol or Hepapressin. It is both, if necessary. Also genetesting might give some help to what to supplement to support methylation.

http://iaomt.media.fnf.nu/networks/iaomt/IAOMT_talks_Rich_Van_K._2011__Part_2.pdf
 
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Messages
86
I started the SMP in 2007 and was regularly in touch with Rich. I also had a Methylation Profile that showed some pretty severe problems. I did improve, my glutathione rose, but it wasn't "enough." I later began Hepapressin (Nexavir) along with GcMAF and that helped some more but I still had to deal with tick borne infections.

I am continuing with all of it now and though improvement is very slow, I am still getting improvement. I don't know if this is helpful, but it is how it went for me. Also, I don't remember the stats in the Rich/Neil Nathan informal study but I doubt if the protocol solved all the problems for most of the patients involved.
Sushi

Hi, Sushi - thanks for your reply. I do realize that some people with CFS have abnormal immune cell counts (T cells, B cells, CD4/CD8, NK cells). Interestingly, or sadly enough, only one doctor (Dr. Enlander) recommended that my daughter get tested for these things. We had been to several other doctors, including 2 other famous CFS specialists and they never mentioned these tests. So, my question for you is whether you ever had these tests and what they showed, if you don't mind sharing.

I think that Dr. Enlander's position on all this is that if you have abnormal immune system results, then that is one more indication of a dysfunctional (and possibly upregulated) immune system. But, he also said that he feels that immune system adjuvants, like Hepapressin, can help even if one doesn't have these abnormal markers. I have no basis to make this statement, but I am not personally sure about that one.

Also, I did look at an article by Dr. Neil Nathan, as posted in ProHealth. In the article, Dr. Nathan mentioned that in his first study, 70% of 50 patients felt better on the Simplified Methylation Protocol and in his second study of 30 patients, approx. 79% felt better in some way. I'm not saying that this was the "cure all" for these folks, but I know my daughter's preference would be to start on the methylation protocol and see how far that could take her before committing to weekly IM shots that sound like they could be painful. She is not ruling it out, but I understand that she'd rather not start with that.

Thanks in advance for any further info you could provide about your situation.

Regards,
Scotty81
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
I do realize that some people with CFS have abnormal immune cell counts (T cells, B cells, CD4/CD8, NK cells). Interestingly, or sadly enough, only one doctor (Dr. Enlander) recommended that my daughter get tested for these things. We had been to several other doctors, including 2 other famous CFS specialists and they never mentioned these tests. So, my question for you is whether you ever had these tests and what they showed, if you don't mind sharing.

Yes, I have had all these tests and there were many abnormalities. Sorry I don't have time to look them up now, but these test results were after several years on the SMP. I am familiar with Dr. Nathan's and Rich's results and patients reporting here seem to find about the same percentages of "feeling better" though rarely feeling actually well. It could be a good place to start though, if this is what your daughter feels comfortable with.

It seems that most of us have to approach this illness in several different ways but the SMP was definitely a boost for me.

Sushi
 

Hip

Senior Member
Messages
17,852
he also said that he feels that immune system adjuvants, like Hepapressin, can help

I believe the word "adjuvant" when referring to the immune system tends only to be used in the context of vaccines, where it denotes an ingredient added to the vaccine which boosts the immune system, in order to ensure the vaccine takes effect. See the article immunologic adjuvant.

Hepapressin would be better classed as an immunostimulant (boosts the immune system) or an immunomodulator (alters the functioning of the immune system).