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TOPIC: tests and progress update

Re:DNA adducts, phospholipid exchange and other stuff 8 years 5 months ago #25

  • jamison
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Hey Maff,

Thanks for that. Its good to feel in touch with people who are going through similar stuff.The fact that you are thinking along the same lines is also good news. Hopefully that means we're less likely to barking up the wrong tree! Indeed it sounds like we have got to the same place with this damned illness - I feel like I've tried everything from hardcore medical treatments like antibiotics for chronic Lyme's from Dr Andrew Wright and strong hormonal support from Dr Barry Peatfield to more esoteric treatments like kinesiology and faith healing. Of course one has never tried 'everything' but one thing is for sure...Its high time we both got better!

I too think the methylation cycle is an important part of the puzzle. Like you I started injecting myself with methylcobalamin. I started last summer. Initially I found it hard to tolerate but gradually built it up so that I am injecting myself with 0.5 ml (5000 mcgs) every day. On top of this I also started to take the tetrahydrofolate along with glutathione, P5P and phosphatidyl serine. I found these easier than the methylcobalamin to tolerate but am fortunate that they don't seem to cause problems with my guts. Dr Pouria administers glutathione and folinic acid intravenously and this obviously gets around the problem of the gut so maybe its worth a go for you too? Are you getting your IVs from Dr Downing?

From what I've heard different people tolerate the different supplements differently. I don't know but my suspicion is that this may be something to do with where the block is i.e. in the folate or methionine part of the cycle. One thing that I didn't do that in hindsight I regret was to get a methylation pathway panel before taking all the supplements so that I could A) establish empirically that there was a block and B) have some kind of measurable metric from which to chart progress. Now that all my values e.g. homocysteine are in the normal range I have no way of proving that there was a block in the first place. I am interested in this genomic testing you got done. Apart from proving that you needed the 5-MTHR, did it have any other implications for treatment?

In answer to your question about the PLX - so far I have been tolerating it pretty well. It seems like a relatively gentle way to detox. Though having said that I'm glad I'm not working as there have been some bumps along the way but these have not been as bad as lots of other treatments I have tried. Working on the methhylation cycle helped I think but then I seemed to plateau so I'm in the same space as you: chucking everything at it. Dr Pouria thinks that I had lots of other biochemical pathways blocked. I had a bodybio report done which shows all the different levels of omega 3 and 6 oils as well as other nutritional deficiencies. Its a pretty expensive test but does seem very comprehensive and Dr Pouria identified several blocks from this but don't ask me what they are because I can't remember! Dr Pouria has got me following the Patricia Kane protocol and thinks this and PLX will clear the pathways. However, I think this will take quite a few more IVs yet.

Thanks for the book suggestion. I'll definitely order it through Amazon. My biochemistry certainly isn't up to understanding all the stuff on methylation and I still have quite a bit of homework to do. Though I have found Rich Van Konyenbourg to be invaluable on this front. He has taken the time to write back to me and I find he is very generous with his knowledge..A great guy. So getting in touch with him if you havn't already might be worth a try.

One thing I didn't understand from your post. What is the BPA? How would you remove a DNA adduct? My understanding was that DNA adducts were very tricky to get rid of. So any light you could shed on that would be great.

Good luck with Saunering!!

Nick
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 5 months ago #26

  • Maff
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Hey Nick,

Yes it sounds like we've been following a very similar path and ended up at pretty much the same destination. Hopefully this will be the last stop on the road to recovery as like you say it's about time we both got better!

I have tried all sorts the same as you and discarded a lot but kept some things that worked...I need as much sunlight exposure as possible during winter to avoid suicidal SAD/depression for example. I also meditate and do Qi Gong daily to lift my mood and energy levels. Interesting you've seen Dr. Peatfield as he lectured on my nutritional medicine degree course and both in person and in his books he comes across as very clued up - at least in his speciality of thyroid and adrenal issues. Incidentally addressing these issues directly has helped me more than anything in the past. I have tried DHEA, licorice (to enhance cortisol), and T3 all with rapid and significant positive effects. Unfortunately, as is often the case, a reason crops up for me being unable to continue with these things - liver toxicity (DHEA) and overstimulation (licorice & T3). I definitely have these things in my mind to try again should I feel the side-effects will no longer be a problem following other treatments approaches.

You're on a good dose of methyl-B12 now then. I am doing 5000mcg but only twice per week at the moment. As much down to cost as anything else! I am waiting on delivery of sublingual adenosyl- and cyano-B12 as additional sources. I've also ordered all of the other supplements you mention as well as SAMe and TMG to cover all the bases. I have tried each individually or a few at a time before but in a haphazard way. Now I know a bit more about the methylation cycle I am hoping I can introduce things in the correct order and see where an effect occurs. I clearly don't react to the methyl-B12 injections as you do as I started with 5000mcg and have felt nothing. I suspect other blocks in the cycle are preventing it from doing me much good in isolation. The problem with folinic acid is that it doesn't bypass the MTHFR enzyme which my genomic testing showed was very inefficient at converting other forms of folate (including folinic acid) to the all important 5-methyltetrahydrofolate (5-MTHF) form. Yes, I am having IVs with Dr. Downing in York and may see if there is a form of 5-MTHF that can be added to the IVs or injected.

Just out of curiosity, where have you been injecting the methyl-B12? Dr. Downing's nurse instructed me to do them in my thigh but I find doing them into muscle hurts...a lot! I have been doing them subcutaneously into my stomach instead which seems to work fine. Still turns my pee red!

I would have liked to have done the methylation panel before starting treatment in this area too but having already spent £1500 on testing over the past couple of months I thought I should stop! The fact is I can't afford to re-test regularly so there is little point in doing every test going.

The genomic testing revealed I had the poorest functioning variants of the enzyme that converts other forms of folate to 5-MTHF and also the one which adds a methyl group back to B12 so it can keep converting homocysteine back to methionine. So two blocks there in the most critical area of the methylation cycle. I also had homozygous SNP for COMT which is involved in breaking down neurotransmitters and is associated with elevated levels of catecholamines (adrenaline, noradrenaline) and mood disorders. Explains a lot!! I also have less pronounced problems with various glutathione-related enzymes and some Cytochrome P450s. As a whole it shed a lot of light on why I am so toxic and why I am so susceptible to stress and mood disorders. I would highly recommend you test the key genes. As long as you don't use Genova it is reasonably affordable.

Glad to hear the PLX is going well for you so far. Hopefully the combination of interlinking treatments will bring the results we want. I also had the BodyBio fatty acid profile (the one done at Johns Hopkins right?) and it revealed too much Omega-3 EPA and too little Omega-6 GLA among other things. ALso had some renegade fatty acids that Dr. Downing said was likely indicative of liver toxicity. I was amused to find I had very high levels of oleic acid - clearly from all the olive oil I use thinking I was being healthy! Has Dr. Pouria given you any indication of how many PLX IVs you might need? Also, have you addressed gut issues at all? Gut dysbiosis can it seems be a pivotal issue and contribute to methylation impairment as well as membrane damage. I know I have big problems with gut dysbiosis but all attempts at treatment have failed so far. I have a strong suspicion however that I might be throwing my money away and wasting my time on these other treatments while the gut remains a problem.

Unfortunately the book I recommended is only available for shipping to the UK from http://www.holisticheal.com/[URL] and is expensive both for the book itself and for shipping. I think you mentioned aluminium showed up on your Acumen tests as a major problem - the book discusses this iand other toxic metals in detail. I have read a lot of stuff Rich Van Konyenbourg has written including forum replies to patients on Prohealth.com and elsewhere. He really does seem to take a lot of time to help people out. We need more like him for sure! I posted some of his articles here on The Environmental Illness Resource.

Sorry, should have explained more clearly. BPA is bisphenol A, a toxic ingredient in plastics such as food packaging. The DNA adducts are best viewed by keeping in mind that if there is something in the body in high enough concentrations to attach itself to your DNA then it is likely to be present in high levels in other tissues and you should therefore use treatments such as PLX to get rid of it. That said, I get the impression from Dr. Downing that it is possible to get these adducts off the DNA and restore the functioning of the affected genes with these treatments. I may be wrong though!

The saunering is VERY relaxing...I get woken up by the buzzer signaling the end of the session every time ;)

Maff
If you are going through hell, keep going - Winston Churchill
Last Edit: 8 years 5 months ago by Maff.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #27

  • jamison
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Hey Maff,

Sorry I have been a while getting back to you. I took a long weekend away and havn’t been near a computer.

Anyway yes Peatfield is one of a kind; a true eccentric and very knowledgeable. A great doctor. I too found adrenal hormones very helpful - so much so that as one of his patients I ended up on very high doses of hydrocortisone (40mgs) and also T3 (cytomel) that like you I found overstimulating. I am now on a much lower dose of hydrocortisone (10mgs) because I was concerned about atrophying the adrenals permanently. I wouldn’t want to be negative about any doctor that acknowledges CFS/ME as a real physical condition (after all that is more than half the battle it seems!) but if I were to have any criticism of Dr Peatfield it would be that he tended to focus very much on the endocrine system at the expense of other issues in this highly multifactorial condition e.g. mitochondria, gut, nutritional deficiencies. I have come to believe that a highly integrative approach is essential to getting better – a multicausal illness requires a multifaceted solution. This is why I started to see Dr Myhill who I found to be much more holistic. By that I mean look at everything – the whole – in the true sense of the Greek word and not just ‘alternative’.

About the gut...I too thought it made sense to get the gut in order before trying anything else. Indeed, Dr Myhill believes the gut to be the foundation of getting well. She believes a lot of CFSers don’t tolerate supplements because they feed bad fermenting bacteria in the gut namely streptococcus, enterococcus and prevotella. I have tried extensively to wipe these out as well as get rid of candida that has been a big problem with me for years. For the bacteria I tried a 6 week course of Rifaxamin (an anti biotic) and Bile acids that apparently the bacteria are sensitive to. For the yeasts I’ve tried naturopathic remedies like caprillic acid, various herbs e.g. olive leaf extract. I even went on a detox retreat in Bali where I literally didn’t eat for a month to try and starve the yeasts. I’ve also given pharmaceutical antifungals like nystatin and sporanox a good go. The yeasts did go away but they kept coming back even when I was ultra strict with my diet. It might be worth adding that all these treatments made me feel dreadful and persevering through them was a real test. My personal feeling is that it is the immune dysfunction that allows these opportunistic infections to proliferate. However, there is very much a chicken and the egg type loop here. Dr Myhill was very much of the school of thought that if you get the gut in order this will in turn modulate the immune system because over 90% of immunity is based in the gut. However, having tried this and hit a brick wall I now tend to view things from the other side: it is necessary to get the immune system functioning again (back to a Th1 pattern) to well and truly get rid of these opportunistic infections for good. Just like patients with AIDS (Acquired Immune Deficiency Syndrome) get severe yeast overgrowth due to a low immune system the same is happening with ME patients. After all another name for the Illness is CFIDS: Chronic Fatigue Immune Dysfunction Syndrome. For me the question is how to modulate the immune system. This is where low dose immune therapy i.e. EPD or Neutralisation may be useful, something that I am lining up for when I finish the PLX. Transfer Factor may also be worth investigating as I’ve heard they use it at the Breakspear Hospital.

Funnily enough I find sunlight really beneficial too. Right now I find the thought of emigrating to Australia really appealing!! I also got into meditating and find energy visualisations can really help. Strange how there seem to be so many commonalities in this illness! I know it is likely there are different sub types but I just feel that there are some very similar if not identical mechanisms at play with people who have prolonged CFS/ME. Listening to some of the stuff you and others say really resonates with me. It’s a bit like when two people have the same cold and they compare symptoms. The symptoms may manifest slightly differently but you know its the same cold. I could be wrong but I often feel its the same with ME.

About the PlX. I get 1 infusion every week. Dr Pouria said most people feel better after 10 but given the length of time I have been ill I’ll probably need 20. As the treatment progresses they increase the dose. I’m already resigned to getting 20 IVs as well as probably adding in other things like IV Vit C, Butyrate and maybe B complex also. At around £250 per IV its a considerable investment! I think it s highly likely I’m then going to go for neutralisation to try and get rid of my allergies – I’m also asthmatic and Dr Pouria thinks neutralisation may help this as well as the ME. The injections I find are best taken in the bum. I can imagine doing it in the leg really hurts! Ouch! The trick I find is to do it really slowly over 30 secs – 1 minute. The methylcobalamin is stingy stuff compared to other types of b12 like cyanocobalamin. According to Dr Myhill its not just me who thinks this but others too.

The gene test you got done sounds really interesting. If you don’t mind me asking how much did it cost and what lab did you use? I also wanted to get a methylation pathways panel done but the test seems expensive and I’ve heard bad things about the lab – apparently they’re inefficient and there’s poor turn around times etc. So in the end I just went for the John Hopkins test like you and decided to get my homocysteine levels tested at Biolab. To my surprise this came back well within the normal range (I was expecting it to be high indicating a block). I don’t suppose you know if this means the whole cycle is working okay or if it just shows the homocysteine to methionine pathway is clear? Both Dr Myhill and Pouria don’t think I need to introduce SAMes but I’m not convinced as the methylation cycle has been one of the biggest things to impact me so far.

As for the Sauna I’m totally with you on that! I’ve just got back from the gym and after having had a sauna I feel relatively clear headed which is a novelty! It was Saunas and (sounds Grosse I know) coffee enemas that got me through my MSc! Swear by ‘em!

Nick
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #28

  • Maff
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Hey Nick,

Hope you enjoyed your long weekend away :)

Yes Dr. Peatfield is a good guy and has certainly taken more than his fair share of heat from the medical establishment as a result of his desire to help people like us. A dose of 40mgs of hydrocortisone does seem high though. From the studies I have looked at there is definite concern over reducing endogenous cortisol production through negative feedback if you introduce that much from outside the body. I think you made the right choice cutting back to 10mgs. I found with DHEA that once I had been on it for a while I could cut the dose quite considerably and still maintain the therapeutic benefits. Has this been the same for you with hydrocortisone?

I couldn't agree with you more about the need for a multifaceted solution for these multi-system illnesses that we suffer from. We are just the tip of the iceberg in terms of a huge dilemma facing medicine in the 21st century - unfortunately most of the medical profession has not even recognised what is going on yet! Medicine has never before been faced with illnesses that affect multiple body systems and manifest in different ways in different people despite the same diagnosis. With medicine organised in specialities it is simply not set up to deal with these increasingly common conditions. I think Dr. Peatfield, despite his clear desire to truly help his patients and not just tow the line, is still only an expert in endocrinology (and more specifically the thyroid and adrenals) and as such tends to focus only on this area, when really we need our doctor to be an expert in every medical speciality. Of course it is impossible for one individual to be an expert in every specialist field and this is the problem. How will medicine integrate all of these areas of expertise and knowledge to effectively help those of us with multi-system illnesses? For now I have taken the approach of learning as much as I can myself and taking the advice of each individual doctor I see in the context of the larger picture I know I am dealing with. Seems like the only way!

I have seen Dr. Myhill on and off for about 15 years or so. She has been a great help in pointing me in the right direction and is another example of a doctor who really understands these illnesses and truly wants to help her patients - and look how she gets treated by her peers!

I'm glad I am not the only one who feels like he's stuck in an endless chicken/egg mind puzzle ;)
I think it is a puzzle that is almost impossible to solve to be honest since an initial gut flora imbalance would cause immune dysfunction that could lead to ME/CFS. Equally, the immune dysfunction in ME/CFS inevitably makes gut dysbiosis more likely. I have tried all the antimicrobials as you have but my problem has always been an acute sensitivity of my nervous system to the extra toxins produced from "die-off". I therefore see Human Probiotic Infusions (HPI), also known as "faecal bacteriotherapy", as a last ditch but very promising prospect for restoring my gut ecology to something closer to healthy. I'm with you on the importance of restoring immune function as well though. I think our best chance of success is to tackle things from all angles simultaneously. On the immune front have you looked into low dose naltrexone (LDN)? Check out this article from a Finnish CFSer I recently published - Low Dose Naltrexone for CFS/ME - Experiences from Finland

Based on my own experiences I just want to caution you on EPD. There are various vaccines that can be included in the shots to desensitise against particular allergens e.g. foods, inhalants, chemicals, gut microbes. I had a couple of shots that included the gut microbe component and they ended up exacerbating my gut problems hugely. I later read the insert that comes with the EPD shots themselves and discovered that it recommends making sure any gut dysbiosis has been successfully treated prior to using the gut microbe EPD shots! Just wanted to give you a heads up on this. Do your research before rather than after ;)

Transfer factor is one of those supplements that overstimulates me. I guess that is a sign that it is actually having the desired effect but with my adrenals struggling and my nervous system hypersensitive I just can't tolerate it. You may do better with you being on adrenal and thyroid support. Let me know!

My SNP tests were done at Laboratoires Reunis (www.labo.lu) in Luxembourg. Dr. Downing uses them as they are cheaper than Genova. The price was 22 Euros per SNP tested for and I had 10 - worked out about £170 I think. The Genova panels include fewer SNPs and cost about £300 last time I checked.

The book by Dr. Amy Yasko I recommended for learning about the methylation cycle potentially has the answer to your question about your normal homocysteine levels. She discusses the CBS gene/enzyme which controls the transulphuration pathway from homocysteine to glutathione (and other sulphur-containing end products). Apparently it is quite common to have a SNP in CBS that causes this enzyme to run fast which results in homocysteine being normal/low despite other methylation blocks. The kicker is that this does not equate to higher glutathione either as the pathway shunts everything into taurine and sulphite production instead! Something else for you to think about - and me as I haven't had my CBS tested for the SNP yet. Dr. Downing has been reluctant to recommend SAMe for me as well. I'm not sure of the reason. There is a wealth of research supporting its use but I think it does have the potential to be too harsh and overstimulating in those who have deep problems like we do.

Most of us with ME/CFS are desperately looking for answers and inevitably come to question the nature of our existence at some point. I thinkm the very nature of the illness means we often find help in places we didn't expect and common ground with people we might not have otherwise. I certainly would have been unlikely to take up meditation and look at alternative medicine seriously but that has definitely changed! Not everything to come out of ME/CFS is bad...I am glad I had my mind opened and my worldview changed ;)

And on that note I'll say bye for now!

Maff
If you are going through hell, keep going - Winston Churchill
Last Edit: 8 years 4 months ago by Maff.
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #29

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Hey Maff,

Thanks for the heads up on the LDN (sounds very interesting indeed!) and for your cautionary word on the EPD! I have been known to be a little impatient to get better and gun ho at times so a word of warning is very much appreciated. Forewarned is forearmed as they say!

I've got 3 more PLX IVs and then we're going to repeat a lot of the tests e.g. bodybio test at JH and maybe do some new ones too. So when I get those back I'll let you know if they're have been any quantifiable improvements.

Yes I couln't agree more about CFS having been a spiritual teacher. Someone asked me sometime ago if I 'regretted' having ME and after a long thought I said 'no'. At times it has been bloody hard and it has meant a lot of holes in my life but it has given me so much that I wouldn't change it. Having said that enough is enough and I'm ready to get better now!!

Good luck!

Until then,

Nick
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Re:DNA adducts, phospholipid exchange and other stuff 8 years 4 months ago #30

  • Maff
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Hey Nick,

No worries. LDN is something I stumbled across last year and thought was very interesting myself! Can't try everything at once though so it's currently on my list of experiments after I've given the methylation and PLX stuff a good go ;)

I think any treatment that radically alters immune function has the potential to go either way so just wanted to add a cautionary voice. I completely empathise with the the impatience you're feeling. I tend to be a bit rash when using myself as a lab rat and have paid the price...but we have been ill long enough already so very difficult to "take things slow"!

Good luck with the remaining PLX IVs and do let me know if the repeat tests show good results. This is the problem for me...very difficult to afford original tests nevermind repeat ones to track progress. I am currently trying to get the NHS to refer me to Breakspear so they can pay for everything (as they should!) but not expecting much :S

Absolutely, the latter part of my teens and my entire 20s are just gone...and I can't get them back. I still feel awful but despite that I would have to say I wouldn't change my life's path either. I like a challenge and being pushed in directions I wouldn't otherwise have ventured ;)

All the best and keep me posted on your progress!

Maff
If you are going through hell, keep going - Winston Churchill
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