My Experience of PLX
I have now had over 20 intravenous infusions of phosphatidyl choline at the Burghwood Clinic under the supervision of Dr Pouria. I though I would give a quick summary of my experiences here so that others may benefit.
I personally had no trouble tolerating IV PLX but I do have to be careful doing things orally. I am unable to tolerate the highly concentrated forms of phosphatidylcholine such as the polyenylphosphatidylcholine found in Life Extension's Hepatopro - they really irritate my gut (although I suspect the ethanol used as a solvent in such supplements may be the problem). Anyway, I have to make do with high phosphatidylcholine lecithin such as PC-35 by Now Foods. You won't need me to tell you but it's often a case of trial and error and finding what works for you, rather than following specific protocols to the letter.
I would agree with all of jamison's suggestions. I have no personal experience of NAET although I have benefited from the healing philosophies and many of the therapies on which it is based. I have also received messages and emails from many others who it has helped.
Methylation is vital as jamison says but I have a major catch-22 here. I have had genomic testing which showed I have homozygous SNPs for both A1298C (CC) and C677T (TT) versions of MTHFR which means my ability to methylate folate - arguably the key step in the methylation cycle - is perhaps 20% of someone with normal versions of these genes. This clearly shows I would benefit from supplementation with the already methylated form of folate - MTHF. The problem is that this supplement causes similar intolerable gut irritation as the highly concentrated phosphatidylcholine I mentioned above.
In my case I know I have severe gut dysbiosis as I have already had the testing jamison suggested - which again I agree are the best tests to have. A comprehensive digestive stool analysis (CDSA) will also show how well your digestive system is working. It's possible for a lack of gastric acid or digestive enzymes to cause problems with nutritional supplements.
In addition I would suggest looking into adrenal and thyroid function if you have not already. Adrenal fatigue in particular can result in intolerances and sensitivities to all sorts of things. Supporting adrenal function often allows people to tolerate things which previously caused problems.
Hope jamison and I have been of some help to you. All the best.
Sorry to hear you are having problems tolerating vitamins and supplements. This is a very frustrating situation that I and many ME sufferers know too well! For years I would hit the saunas as this was the only thing that would clear my head for an hour or too and, like you, I found supplements hard to tolerate.
Over the years I've addressed several things that now mean I can tolerate the vast majority of supplements without too many problems. These are:
1) Address any methylation cycle blocks through following the Rich VanKonyenbourg protocol. If we can't methylate vitamins and turn them into their useful forms then they can do more harm than good.
2) Address gut issues. Dr Myhill postulates that a poor ability to tolerate supplements could be because they are feeding the bad bacteria in the gut. These then grow, produce toxins and make you feel lousy. It may be worth looking at doing a comprehensive digestive stool analysis through Metametrix and also a gut fermentation profile through Biolab to see what's going on there.
3) I know this sounds crazy but for me this was increadibly important: get yourself desensitised to vitamins through NAET. This made me feel loads better. It sounds counterintuitive I know, but I think lots of people with ME are essentially allergic to a lot of vitamins. Caroline Bardavid at the NAET clinic in London has been particularly helpful for me on this front and I can now take B vits with no problems.
For what its worth I persevered with Vitamins and minerals for years, pushing through their adverse effects, in the belief/hope that eventually they would do me some good. It was only through addressing the above issues that I began to get some benefit from them and they now do the job they are supposed to.
Well it seemed logical to me to try to sort out my gut first (i.e. major source of toxins) before attempting the stages of detoxification and repair that PLX should bring to the table. From your account of the benefits gained through your extensive PLX treatment however it seems that it may provide significantly beneficial results whatever the starting point. If I had the money I may well give it a real shot but LDN and neurofeedback are next on my list of things to trial since they are much cheaper.
Amazing how much your gut lab work improved through the course of the PLX. I guess we can only assume that the systemic nature of PLX's effects were able to benefit your gut ecology through some route or other.
Re: follow-up Metemetrix testing after my HPI I'll post about that in the HPI group tomorrow.
Great to hear you are now also seeing great benefit from NAET. I have setup a group and sent you an invite if you want to post about your experiences with it so far.
I totally see where you are coming from with the gut. I think in many ways it makes sense to have done HPI before looking into PLX for the reasons you outline. Have you organised a follow up metametrix stool analysis and/or a Biolab Gut Fermentation Profile to see if the HPI had any impact? The HPI may have done more than you think even if you can't feel it.
I had upper gut fermentation at the beginning of treatment and much lower levels of bacteriaoides etc at the beginning of treatment. At the end my gut had definitely improved. This was not only confirmed by a metametrix stool analysis but also by an H2S breath test, gut fermentation profile and a leaky gut test performed by Biolab. Interestingly I didn't feel much symtomatic improvement even though my results had normalised and all the doctors had thought my gut was the main problem.
What is having a very powerful impact for me is addressing my allergies. For years I have been reacting to all kinds of foods and inhalents (molds, dust mite, pollens). Whilst many of these allergies have been obvious (like to pollen causing hay fever for example) many have not been so obvious causing headaches, brain fog, fatigue and ME/CFS symptoms. This has been a bit of a revelation for me. Even though I have asthma and an atopic makeup and I knew this, I didn't realise what a big player allergies were in my illness.
I'm drifting away from PLX here so I'll keep it short but I am getting huge benefit from NAET so if you fancy starting a group on that I would be more than happy to contribute. On the EPD front, I am going to have to wait a couple of months to receive the shots until I can come down from hydrocortisone which I am taking.
This is my feeling too from the research I have done on PLX and my own testing - DNA adducts, mitochondrial health/function, lipid profiling - much as you have had performed. My only concern personally is that my gut is hugely toxic with rampant yeast overgrowth and it is a question of whether the PLX aiding my overall health would help to tackle this issue or whether the continued absorption of yeast/fungal toxins would rule the PLX treatment null and void.
You may well be onto something when you suggest the positive effects of PLX on liver detoxification/bile flow and jumpstarting vital biochemical pathways such as the methylation cycle have helped with your gut issues. Those effects would be expected to have powerful healing effects overall. Bit of a risk for me though when the price tag is £10k however (which I don't have a fraction of!).
I am delighted it has helped you so much and certainly if people are able to return to work that is an amazing success!
Just a note of caution on gut tests. None of them are particularly reliable. What makes us the sickest is upper gut fermentation caused by small intestinal bacterial and yeast overgrowth. I would only trust Biolab's Gut Fermentation Profile and perhaps hydrogen/methane breath testing for SIBO (although studies find this to be not particularly sensitive).
Thanks for the tip on sourcing oral PC. I always buy supplements from the US anyway but getting the BodyBio product seems wise since Patricia Kane is the one who has done all the work on this.
So EPD next? Do you think it would be worth setting up a group for that and its US equivalent low-dose antigen (LDA) therapy?
My impression is that if mitochondria, toxicity and biochemical blocks are your main problem then PLX can cure you quite quickly and effectively. I saw this with quite a few patients I spoke with at the clinic. One patient in his late 20s (long term CFS sufferer) was referred to Dr pouria from Alex Howard's Optimun Health Clinic in London. He had responded well to oral phosphatidyl choline and butyrate but the IV's meant he could go back to work within a couple of months. So great result... It is hard to say exactly what percentage of patients fit into this category but it is a fair old few.
However, the more complicated patients (I would say at least half) who have other issues may need more work after the PLX. Unfortunately I fall into this category. I believe my problems stem from allergy and immune dysfunction. PLX didn't tackle these directly in my experience.
I think my gut improved partly because I adhered to the low GI detox diet extremely strictly. However, I have done this before but without the same results so some of my improvement was down to the PLX. Maybe clearing out the liver (which was chocker), detoxing the gut and clearing a series of biochemical pathways facilitated healing? Dr pouria offered no explanation. On the contrary she was surprised my gut had healed so well as she was attributing my contiuing symptoms to gut dysbiosis. However, a series of gut tests ruled that out.
A quick note on oral phosphatidyl choline (PC). Try and get it directly from Bodybio (Patricia Kane's company) and sent to an address in America. It is half the price this way. If you buy it in the UK it is increadibly expensive.
Thank you so much for sharing your experience of PLX with us. Your account is particularly useful because the treatment protocol you followed was so comprehensive and you were able to compare baseline testing of mitochondrial health/function and other factors with results following treatment.
£10,000 is a huge amount to spend and will be way outside the budgets of a lot of ME/CFS patients but it is fantastic news to hear that it has made such a difference to you in terms of energy levels, as well as the empirical evidence of improvement from the follow-up testing. I agree that a 30% improvement in your terms would probably be considered a cure to many - the degrees of severity in ME/CFS are so wide. You mention other patients at the clinic feeling they were back to at or near 100%. I think the more important question for people thinking of splashing out large sums of money on PLX is...what percentage of patients see an improvement? Do you think you could estimate that from speaking to people at the clinic?
Interesting that your gut health improved through PLX. I would expect the other factors to improve (in theory) but the reasons for improvement in gut health are a little less obvious. Did Dr. Pouria have an explanation for this?
Sorry for all the questions. Great to know you have gained a lot from this (especially given the expense) and hopefully you now have a solid foundation on which to build further improvements!
I have suffered from ME/CFS since I was 16 (I am now 27). Specifically I have had mitochondrial dysfunction, methylation cycle blocks, DNA adducts, vitamin and mineral deficiencies, blocks in the conversion of essential fatty acids as well as gut issues (candida overgrowth). I also suffer from asthma, allergies and I suspect have immune imbalances.
Like a lot of people my illness started after a viral illness (probably glandular fever) that never fully resolved.
Over the years I have tried a significant number of treatments to try and correct these deficiencies and get better but with little or no success. However, I can report that whilst PLX has not cured me and it was very expensive, it has been by far the most successful treatment to date.
Overall I spent well over £10,000 on the IVs, appointments, tests and supplements. The test results showed that under the regime at the Burghwood clinic I resolved a number of issues:
1) Mitochondria normalised
2)Methylation Cycle cleared
3) I am now converting Essential Fatty acids properly
4) DNA adducts have now gone
5) Gut is now normal - no candida, no leaky gut, normal levels of healthy bacteria. This is no doubt partly attributable to the strict low GI diet I followed and continue to follow.
6) Restored levels of Vitamin and Minerals
In short, I believe PLX has been extremely successful at detoxing me and clearing biochemical pathways. These were contributors to my fatigue and I have as a result experienced a 30% improvement in my energy levels.
In many cases, I think these improvements would have 'cured' many people of CFS. Indeed, this was the case with many patients at the clinic. However, unfortunately this was not the case with me. What PLX did do, however, was put me in a very good place to get better.
PLX was unsuccessful at dealing with my allergies and I still believe I have an unresolved viral issue. (it is worth mentioning perhaps that Dr Pouria believes PLX to be extremely successful at washing viral DNA off).
Dr Pouria follows the Patricia Kane protocol. She also works closely with Dr Myhill who referred me to see Dr Pouria.
Now that my body is less toxic and working better, I am working at resolving my allergies with NAET and also lining up EPD. Incidentally, you can also receive neutralisation (a form of allergy desensitisation) at the clinic that I found to be very useful although it was an impermanent solution to my allergy problems.
If you have been ill for a long time, have evidence of biochemical blocks and/or toxicity and have the dosh I can recommend this clinic and line of treatment as a possible solution.
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