Hey Maff,

Its been a while but as promised I thought I'd give you an update to show what my repeat tests showed. Across the board there have been improvements which is great news and I think really positive for others getting PLX.

I didn't get the bodybio JH test repeated because Dr Pouria thought I hadn't had enough treatments to show significant improvements. I did, however, get a load of tests repeated from Acumen. These showed:

1) ATP was now normal. Previously it had shown 'rapid depletion of energy on demand'. Over the years my ATP has been very slowly improving anyway with all the relevant supplements e.g.CoQ10 etc but PLX and the magnesium shots certainly seem to have helped.
2)Red Cell Glutathione is now well within the normal range. Previously it was low. This is also true of zinc.
3) Metallothionein - this is now normal. Previously the overall level had been low. Also Aluminium was binded to the metallthionein which accounted for 8% of the total (bad). This was now gone and zinc:copper ratios had normalised (good).
4) Bilirubin level had gone down within the normal range indicating improved liver function. Previously this had been elevated. Indeed Dr Myhill thought I had Gilbert's syndrome and was a poor detoxifier!
5) DNA adducts - Previously I had 4 genes of carcinogenic nitrosamines. The PC washed this off so now it was only 1 gene.

There were more good results but these give you a flavour of the definite quantifiable, empirical improvements as a result of the PLX. So although I havn't experienced any qualitative improvement i.e. I'm not actually feeling better I think this is very promising and offers hope to others too.

Dr Pouria now wants to add Phenyl Butyrate into the mix for another course of 10 IVS. PB is apparrently very good at breaking down long chain fatty acids. I had my first IV of this last week. I have to say that this made me feel awful - even harder to tolerate than just the PC! But I don't know if it is my imagination but the second morning after I could have sworn I had greater mental clarity. Time will tell if this was the treatment or just a coincidence...

Dr Pouria also wants to start me on neutralisation because my asthma is bad and she thinks allergy may be player in the ME. I had the skin testing done and it was pretty increadible; as they injected the various food stuffs like eggs I could feel myself react and various ME symptoms were turned on. I'm getting tested for inhalents next week. I havn't started the vaccines yet and they are not going to vaccinate me against any gut microbials but remember your word of warning with the EPD and the reaction you experienced. I am worried, as you say, that anything that affects the immune system so fundamentally could go either way. Have you since returned to your baseline level since your bad episode with the EPD? Do you think getting vaccinated against foods and inhalents (not microbials) will be safe enough? Ever since the skin testing I have been feeling more ropey than usual and this has made me pause for thought.

I hope you are well and you have been making progress your end. Are you still getting the PLX from Dr Downing and if so how are you feeling on it?

All the very best,

Nick

Hey Nick,

Great to see you on the site again. Thanks for coming back to share your progress.

I just missed you on chat the other night. Just wanted to let you know It'd be today before I got chance to reply as yesterday was my birthday

Fantastic to hear that there have been measurable improvements with the PLX and other bits and pieces up to this point. The great thing is that the treatment and testing are independent of each other so you know you can rely on the results. I think it was sensible to leave the Body Bio JH retest a bit longer as it's not cheap and you don't want to be spending all that money before enough time for major changes has passed. It will obviously take a good while for fatty acid distribution to be shifted.

Your Acumen results really are impressive! Looks like your body is doing much better with many of the major contributors in ME/CFS i.e. ATP, glutathione, markers of toxicity.

I would have thought with increased levels of ATP and glutathione particularly that you would be feeling somewhat better subjectively but I suppose it may well be the case that improvements would show up on testing before you can actually perceive them. Hopefully over the coming months you will start to see tangible improvements in how you feel. With an illness like this it is bound to take a while. I think we are all being taught a life lesson in patience, we certainly need it (along with fat wallets - thank you NHS)!

I didn't realise Phenyl Butyrate was used to break down the very long chain fatty acids. Sorry to hear it's not a pleasant experience to receive the IV but great that you felt clearer headed that next morning. I do know that Patricia Kane et al refer to the use of butyrate in the Detoxx Book. They apparently use it as an alternative to cholestyramine as a means to mop up neurotoxins and transport them from the body. I am pretty sure they only use it orally and whether IV butyrate would have the same effect I don't know...but it all seems to fit with your greater mental clarity. Something to ask Dr. Pouria at your next visit.

From my experience I wouldn't recommend EPD at all but as you will be well aware we're all different. Lots of doctors use it and apparently get good results with their patients so I'm sure not everyone reacts as I did. To be honest I had a series of 6-8 during my teens just for allergens and although I can't say I noticed an improvement, I didn't react badly at all. I also wasn't doing all the other things I should have been doing to help myself, the opposite in fact...I was a teenager! Anyway, it was only after I had quite clearly developed a major gut dysbiosis and then had EPD shots containing the microbial component that I had problems. I have not returned to baseline unfortunately as I have been unable to tolerate any antifungal and probiotic treatment as I think I've mentioned. I'm sure I would have if this were not the case. I am sure my immune system was not compromised permanently by the EPD. If I were you I would perhaps start with EPD for just food allergens (or just inhalants) first and see how you react. If nothing untoward happens then maybe it is something worth pursuing - although again it's not cheap!

At my end I have been sticking to the methylation stuff (methyl-B12 injections + oral B12, folinic acid, PS, PC etc) but decided to hold off on the PLX, partly for financial reasons and partly because I know that my gut is what needs sorting out first or I will essentially be constantly bailing out water from a boat with a dirty big hole in it. No point spending a fortune on PLX when the source of much of the original damage is still present. So, I'm saving my pennies and plan on having Human Probiotic Infusions (HPI) before moving onto PLX (and the rest) if that is successful.

You feeling any better after the allergy testing yet?

Take care,

Maff

Hey Maff,

Happy Birthday for yesterday! Hope it was a good day and not too blighted by symptoms!!

Funnily enough I myself was considering an HPI. One of the things that stopped me was the fact that I couldn't find a suitable donor. I am an only child so no brothers or sisters to call on and unfortunately both of my parents have health issues and so arn't appropriate donors either. Also I don't know of any colonic specialist who is prepared to do the HPI but it sounds like you may have circumnavigated this problem?

I know what you mean about needing thick wallets! I am haemoragghing money on various treatments. I am lucky in that I had some shares that matured; they were meant for a deposit on a house but I just thought 'Sod It!': what's the point in having a house if you feel crap all the time and don't have enough energy to work and so pay the mortgage? So hence why I have decided to throw everything at it. Don't suppose you had any luck with getting referred to the Breakspeare by the NHS? That would be a real coup! By the way, the Breakspeare have a private charity organisation affiliated to them that provide grants for treatment for people who are in financial hardship. (The vast majortity of ME sufferers I would have thought!) Anyway might be worth exploring if you havn't already...

RE the PLX. Yes the results are good news and I think bode well for others. I have also met a few other CFSers in the clinic (mostly quite young) who have been helped by the IVs. Some are back in work now etc after years of illness so that's promising. One guy in particular says it was the Butyrate that did it for him. The optimum health clinic run by Alex Howard (who I have always thought are quite good and respectable) are referring people to the Burghwood clinic for the IVs now. Apparrently the butyrate works something like along the following lines: 1) phospholipids in the cell membrane become damaged and lose their integrity allowing unwanted substances into the cell 2) Long chain fatty acids build up inside the cell 3) Often these are longer than the diameter of the cell and so cells become mishaped and lose their cohesion 4) they become 'leaky' and die prematurely. From what I undersand as a lay person the phenyl Butyrate then breaks down these long chain fatty acids, taking unwanted material out of the cell. I had my second PB IV recently and it was easier to tolerate than the 1st and I had even greater mental clarity. So its definitely doing something and I have high hopes for this treatment - even more than with just the PC by itself. Indeed it is only now that I feel I am into 4th/5th gear with this treatment. I am essentially on the Patricia Kane protocol (Dr Pouria and Patricia Kane work closely together) and it seems to take a while to get going. Patricia Kane administers the PB intravenously too and apparrently gets good results so here's hoping...

About the neutralisation. I have taken your advice and am going for the foods and inhalents only for the time being. I have recovered from the skin testing now that I am on the vaccine. Early signs are good but too early to say for sure. I'll keep you posted...

For what its worth, I think you're sensibile to try and get the gut in order first. I know this is the approach Dr Myhill takes (someone I like and trust immensely). I still have the gut dysbiosis and I am going to have to tackle this at some point. I think in many ways the order you are doing things makes more sense.

I noticed on one of your other posts that you're having trouble tolerating glandulars. As I think I mentioned before I worked with Dr Peatfield a lot and so have tried quite a few glandulars in my time. I found that I couldn't tolerate any ones with herbs or B vitamins in. Many seem to contain these as adjuncts for the adrenals. However, if your methylation cycle still isn't up to speed I think this can cause problems (and there are no doubt other issues that we don't yet know about). From memory there are some good glandulars on the market that are 100% pure and contain nothing else. These are by Nutricology and Allergy Research. I found these much more helpful. Might be worth a go if you are still stuck.

all the very best,

Nick

Hey Nick,

Thanks for the birthday wishes. I actually had a great day. My dad knows a commercial airline pilot who took us up in a 4-seater light aircraft. I got to fly one way, we landed at another airfield for a drink, then my dad flew back. Felt like a rich man's day out. Loads of fun but was wiped out the next day as you can imagine!

I have the same problem with donors for HPI as both my mum and sister have major gut issues and my dad's gut flora is unlikely to be the ideal for me either. However, the clinic I am looking at using - The Probiotic Therapy Research Centre - apparently uses a pool of healthy donors as far as I can tell. No relative required. In fact, a lot of specialists doing this have said the recommendation to use a relative is as much to make the procedure more acceptable to patients as anything. It's not essential for the success of treatment.

The only problem with the place above is that it's in Sydney, Australia, so a big trip and a big expense. However, Professor Borody who runs the place is the guy who pioneered the procedure and the clinic treats people with IBS and ME/CFS. The only place that does as far as I know. Most gastroenterologists only use HPI for antibiotic-resistant C.diff.

If you want to learn more BBC Radio 4 recently did a 30 minute program on HPI, or faecal bacteriotherapy, that you can listen to online at the moment - Case Notes: Gut Bacteria

Not surprised all the tests and treatments you're having are making a huge dent in your wallet. You're absolutely right that there's no point in having a house deposit if you're not well enough, or can't be confident you will be a way down the line, to make the mortgage payments. The fact is that in the UK we shouldn't have to spend all our savings on medical bills...but I guess there is no point dwelling on the unfairness of it all! I have taken the view that I need to be clever with my money and spend it on what I know are most likely to reap real benefits. I have spent a lot in the past that was essentially like flushing money down the toilet. I am planning on writing my first book later this year and hanging my hopes on it being a success and giving me a bit of a windfall. I'm never going to earn enough to pay medical bills, buy a house, and the rest, from the revenue from this site alone. Anyway, your test results and recent positive results from the PB IVs show that you're spending your money wisely

Thanks for the explanation of how the PB works. I was aware that the VLCFAs distorted the shape of the cells and thus allowed leakage and caused all sorts of other problems with normal cell functions. I hadn't heard of anything other than the standard PLX being used to deal with this so great to know, especially as you seem to be getting such great results with it. I'll keep it in mind for down the line when I am at that stage.

Dr. Myhill is a doctor I have seen on and off for years and also trust completely. She really knows her stuff. Her whole life is dedicated to learning about these illnesses and helping us patients.

So it looks like we're doing (or planning to do) the same things but in a slightly different order. Make sure to stay in touch so we can compare notes!

Thanks for the recommendation on adrenal glandulars. The Nutricology product does look the best by far so I'm going to give that a go. My problem is my liver can't handle the hormones but the herb Tribulus terrestris has proved to protect it in the past so I'll be taking that at the same time. Only problem is that has antifungal properties so I then need diazepam to counteract the effects of yeast die-off on my nervous system. Nothing is simple is it! Will let you know how I get on

Take care mate,

Maff

Sorry forgot to thank you for the tip off about the Breakspear charitable organisation, I wasn't aware that existed. I will definitely look into that. Often with these things you need to be on benefits, in which case I wouldn't qualify, but if a low income is sufficient then I definitely would!

I haven't actually been back to my GP since December as I just haven't felt up to making the effort to be honest. Now I have the spring sunshine to give me a mood and energy boost I plan to get onto it in the next few weeks. My GP is a very genuine guy and said he would look into how to go about trying to get a referral so I'm sure he has done that. He mentioned it would probably only happen in exceptional cases and there would likely be hoops to jump through. I think being severely ill for 2/3 of my 32 years and unable to function anywhere near normally and so far receiving next to no help should qualify as exceptional personally...but I am sure the people holding the purse strings in the NHS will have a different definition of 'exceptional'! Anyway, I'm prepared to jump through any hoops they want me to jump through so bring it on. Time to fight for the treatment I deserve I think

Thanks again!

Hey Maff,

Pleased to hear you had a good birthday. Sounds awesome; I didn’t realise you could just commandeer a plane like that. I thought you would have to spend hours in a simulator before they even let you near one! Definitely worth being wiped out for the next day by the sounds of it!

Thanks for the info on the HPI. I listened to the BBC podcast and I have to say the more I hear the more interested I get. Do you have any idea on how many treatments you will need and the cost involved?

About the Breakspeare charitable trust application. Although I think they tend to reserve donations for children and teenagers only who wouldn’t otherwise be able to afford treatment, I still think it’s definitely worth your time applying. The fact you have dedicated years of research trying to find answers as to why you are ill, got a nutritional degree to aid this pursuit and set up the Environmental Illness Resource all have got to count in your favour. After all Dr Jean Monro and the Breakspeare trust are part of the British Society of Ecological Medicine (BSEM) and the EIR directly links in and serves the interest of this group. Also, one of the founders of the trust, Lady Claire Kerr, got ME roughly the same time as us at 16. She was ill for 7 years and got better through treatment at the Breakspeare so the length of time you have been sick shouldn’t count against you. If anything it should strengthen your case. Anyway let me know how you get on...

Good luck with the glandulars and the die off. I have used diazepam myself in the past and it’s a real blessing. Good stuff and I think perfectly reasonable to use when your nervous system gets wired as a result of toxicity due to die off.

My end I’m in the midst of a rather weird (overall I think good) experience. As you know I started the neutralisation vaccine for foods and I have to say it has been a bit of a revelation. This is now my 5th day on the food vaccine and I introduce the inhalant vaccine on Tuesday. I don’t want to blow the whistle too early but it is definitely doing something quite profound. The first time I took it I noticed a clearer head within minutes, clearer sinuses and a lifting of brain fog that I find to be the most frustrating symptom of ME. Within a few days, I started feeling really throaty, sore glands, extreme fatigue, slight temperature etc. Exactly the same glandular fever type symptoms that I never really fully recovered from back in 2000. To make sure it was the vaccine I did a little experiment. I came off the vaccine and the symptoms dissipated. I then went back on it and the same thing happened in exactly the same way. So it’s definitely the vaccine. At the moment I feel really ill but ill in a conventional way rather than with ME. I don’t want to jump the gun but my intuition is telling me this is a good thing. Maybe my immune system is rebalancing itself and able to hit unresolved viral issues? Who knows?

I know you have had a bad experience with EPD but neutralisation is slightly different from EPD (it is tailored to you, administered every day etc) and it is easily the most powerful treatment I have had. It is still very early days but I think the whole issue of allergy is definitely an important one and may be worth revisiting at some point when the time is right...I’ll be sure to keep you posted.

In the mean time Good Luck with everything you're doing your end and the book. It sounds like you've fought a long war and I'm for one interested in giving it a read when you're done.

Until then,

Nick