My recovery story, in case anyone is interested

[Valentijn]

@justy - My limited experience with chiropractic would lead me to not recommend either for or against it. It was the generalization made about it by PhoenixDown and the addition of something James' actually spoke against that I was responding to.

Agreed. I don't see that chiropractors are of any specific use in ME/SEID, beyond the pain relief or other assistance which any non-patient might get from them as well. But they certainly aren't all quacks - the vast majority of chiropractors aren't claiming to cure complicated chronic disease.

 

[Snowdrop]

Absolutely agree that chiro's can't cure ME/SEID if that's what anyone's claiming.
I have always been a sceptic of ever so many things. That said as I became increasingly ill I did what (I think) many others have done and tried ever so many things out of desperation.

From my experience fwiw, as so often happens in life not all chiro's are created equal. In our case dealing with someone average in their health field isn't likely to be of use. I have not had any benefit from chiropractic but I have had relief from a chiropractor. But she had additional and lots of training beyond chiropractic and she seemed to have a knack for feeling her way around. She did some kind of deep tissue release that was amazing for me. It was more than pain relief but I suspect that it would only have been somewhat temporary easing of muscle tension (or rather a need for continued extensive treatment which is impractical without boat loads of cash) had I been able to continue with the work. We had to move province just as I found her and we were running out of money anyway as I had tried so many other things before discovering her.

There is more to say regarding the treatment but I'll leave it there. Long posts are difficult. I've left details out.

 

[james7a]

In this video

you mention chiropractors. Chiropractors are quacks just like homoeopaths.

I'm not sure the neck 'clicking' did much for me. like pheonix below, she was very good at feeling for tense spots and massaging them and it was beneficial to me. I would like to repeat that I have never once claimed that a chiropractor cured me or any therapy for that matter.

I also wouldn't be chiropractor along side homeopathy.. she physically massaged tense spots in my neck and it felt better. she didn't give me memory water

She did some kind of deep tissue release that was amazing for me. It was more than pain relief but I suspect that it would only have been somewhat temporary easing of muscle tension (or rather a need for continued extensive treatment which is impractical without boat loads of cash) had I been able to continue with the work. We had to move province just as I found her and we were running out of money anyway as I had tried so many other things before discovering her.

This is what helped me, the deep tissue release (I was calling them muscle knots). I said it helped towards my recovery because i was able to relax more. It benefit me. I never ever claimed Chiropractors cured CFS. I never claimed any one therapy cured CFS because there isnt one and there never will be. The idea that such a complex issue as POTS/CFS/Fibromyalgia can be cured by a single change is ridiculous.

 

[Snowdrop]

I went and had a lie down and it came to me.
The deep tissue massage I referred to had a name. I think it was myofascial release. It felt like adhesions being let go. I've had plenty of very good spa massages long ago. This was not the same. This was done on my abdomen not my back. It was more probing. And as I said, for me, it was surprisingly effective although I imagined that the treatment would require long term commitment at least for me.

@james7a glad you found some help with that. But now I need to ask: do you continue with this treatment? If not how long ago now did the treatment stop and how did you assess what was enough?

 

[james7a]

I no longer have the treatment(had no way to get there after certain events) and found various ways to do it myself. One example is here:
http://www.reddit.com/r/Fitness/comments/2kzaix/the_foam_roller_is_an_awesome_selfmassage_tool/
Also look at trigger points in google images and get a tennis ball. It takes a while but when you find the spot you just put pressure on it with the tennis ball for a minute and it feels very relieving

 

[taniaaust1]

Chiropractors are quacks just like homoeopaths.

Chiropractors are like doctors.. its easy to get a bad one and they shouldn't all be judged as bad due to that. A chiro I used to have as boyfriend, once told me there was about 130 different kinds of chiropractors with their schools teaching different techniques and different things.

I've seen about 7-9 of these over the years for different things or another (hip, back, neck, dizziness, headaches). One of these was clearly just about making money, he wanted me to make the commitment from the very start to see him weekly 10 times.. and when I did, it turned out he was no help at all to me for anything and then wrote on his report I was much better, which I wasn't at all, I was just as locked up in places as I had been when I started with him (I wasn't seeing him for ME/CFS issues but rather things people commonly go to chiros for). Avoid any chiro which says anything like this one did!!

Then there are the others I've seen which seem fairly standard. They tend to help me with things.. I may need 2- 6 regular visits depending on how I've injured myself or what is going on. These always from start have been honest and told me they don't know how many visits I'll need, it may be a just a couple or more.

Then there is the exceptional chiros who actually often say they probably will be able to greatly you help you in only 2-3 visits or even with just one treatment. I always expect with chiropractor appointments now days to feel a great relief in just ONE SESSION, if I don't, I wont go back to that one. I'll go to a chiro until I aren't getting any improvement in a visit.

With all this being said in my own experience I only think they can help ME/CFS stuff if you have something actually out which is exasserbating ones symptoms (which can often happen) eg What I'd thougth was ME dizziness got far better with a chiro treatment on my neck, I didn't even realise at the time the constant dizziness was from my neck as I hadn't noticed issues with my neck (I didnt have pain there and I didnt notice tightness there until the chiro worked on it) . I also get dizziness from POTS, but it turned out my neck was making my dizziness a lot worst. After treatment I was no longer constantly dizzy on both laying and standing.

Only 2 out of 8 chiros Ive seen have been very good ones (these had more then the average chiro training, one had trained through more then one chiro school, while the other I still see at times is what is called an "ortho. chiropractor (which is a certain form of chiropractor she's interestingly also a qualified physio but its the way she works as a chiro which helps me at times amazingly well.. not though for ME stuff but when Im having severe back, hip, neck issues).

Both the very good ones had an amazing sense of feel what what they do, they could go to my pain spots without me telling them (one of them was a psychic healer too who could see a persons energy).

any way my experience with these has been-
1 bad money hungry on
5 ok (fairly standard and takes several appointments to treat, more if bad with injury, sometimes these just help a bit)
2 exceptional. So these certainly aren't all the same and I wonder how many exceptional ones who are often in high demand go and enter studies?

Always get a recommendation from someone you know who's seen one rather then randomly going to these (that's how I found my good one).

 

[David Hammond]

Hi @David Hammond
Thanks very much for your posts which have prompted me to reflect on my own story.
About three years ago I removed my amalgams and felt slightly better immediately afterwards, i.e. my nervous system kind of calmed down.
I followed the Cutler's protocol and got some improvement but not very much. I stopped after about six seven months because a) chelation did not seem to produce much improvement whilst waking up at night to take my supplements was a nuisance and b) I got more improvement from treating chronic infections (Lyme, CPn).

However, since I'm stuck at a recovery level of about 50% I was wondering whether mercury could still be there and might be the real issue.
So far I have always considered mercury not really the main problem for me.
Whenever I tested, mercury was always rather low in urine, hair and feces however lead was relatively high.
As I was reflecting on past treatments, I thought there may be some clues that mercury could be an underestimated health issue for me.

1. After my initial viral infection which caused the onset of my illness, I very gradually got worse during a time when I was using chlorella and zeolite, although they never caused me any immediate adverse reactions.
2. I did a lot of iv glutathione and although I never had bad reactions, after about a year I felt something had changed for the worse as I became oversensitised to a few supplements and later developed MCS but from which I have now recovered.

My questions:
- Could someone at the same time be able to excrete lead but not much mercury?
- Does calcium increase excretion of lead ?
- For people who might not be able to excrete mercury, shouldn't mercury in any case show up in urine or perhaps feces after chelating with DMSA and ALA every three hours over a few days by comparing samples before and after chelation?
- In that case how much increase in mercury (e.g. 50% more, double etc), compared to pre-chelation samples, would indicate mercury as a problem? I assume that in this modern day and age we all are going to show some.

ps: apologies for posting out of topic, perhaps this post could be moved to a more relevant thread.

Chlorella causes adverse effects in a significant number of people with mercury poisoning. I took alpha lipoic acid once a day for several months (instead of every 3 hours according to the half life) and eventually developed problems with balance - the effects of redistribution to the brain can be slow and insidious.

If you have lead in addition to mercury, progress can be slower (mercury and lead are synergistic). What chelators and doses were you taking when you did the Cutler protocol?

I don't have any specific information on the differences between excretion of lead and mercury but they would not be exactly the same pathway and I think an individual may certainly be able to excrete one heavy metal more efficiently than another. However, mercury interferes with many cellular processes and organ function and would reduce detoxification abilities in general.

A deficiency of calcium increases lead retention and increased calcium reduces lead absorption.
http://europepmc.org/abstract/med/24077
http://www.biochemj.org/bj/166/bj1660531.htm

There would be an increase in urinary and fecal excretion after a few days of chelation - it would vary according to the dose, chelator and degree of poisoning. HA Roels administered two grams of DMSA in a single dose (not the recommended way to take it) to three groups of workers. The first group had no occupational exposure to mercury, the second group had worked at a chlor-alkali plant but had been removed from the job due to high urine levels of mercury, and the third were still working in the chlor-alkali plant. For the first group, the total 24 hour output of mercury in the urine doubled, for the second group it tripled, while for the third group urinary excretion increased by a factor of four. However, 2 grams is a very high dose and most people would probably start on 12 to 25 mg DMSA every 3 hours for 96 to 200 mg per day. DMPS is more effective for mercury with urinary mercury increasing by a factor of 10 to 20 with a 300 mg single dose.

Most people don't bother with measuring urinary output before and after chelation as it is expensive and your symptoms are a better way of measuring your progress.

The easiest way to determine whether mercury is a problem for you (if you don't currently have amalgams) is to take say 12 or 25 mg alpha lipoic acid every 3 hours for 3 days. If your symptoms are either improved or exacerbated it is confirmation that mercury is contributing to your symptoms. Some may need to go as high as 100 mg every 3 hours.

 

[PhoenixDown]

(one of them was a psychic healer too who could see a persons energy).

What kind of energy?

 

[xrunner]

Many thanks David for your reply, that's very helpful.

What chelators and doses were you taking when you did the Cutler protocol?

I followed the protocol to the letter and after an initial few months on DMSA only, I started low but most rounds were with DMSA 50mg and ALA 25mg for 4-5 days each time.
I knew DMPS was more effective at chelating but in the UK I couldn't get a doctor to prescribe it.

During my last round I took DMSA 100mg and ALA 100mg which I did to test my reaction (I felt better rather than worse) and also because I took a urine test after chelating 24hrs.
Unfortunately, the lab may have made an error because mercury levels were exactly the same as in the pre-chelation sample...

But based on the fact that I did not have any adverse reactions to increased dosages (when I started instead I was quite sensitive to dosages) I concluded that may be there wasn't much mercury left and didn't bother requesting another test.

I wasn't aware that if symptoms improve that could be a sign of mercury toxicity. I thought it was only the other way round.
With ALA my physical stamina was much better and so my exercise capacity/recovery but I attributed the improvement to its general antioxidant effect rather than something to do with mercury.

ps: Hi @Sushi, I'd rather not divert this thread from its original topic, could the posts relating to mercury toxicity be moved to another thread?

 

[ukxmrv]

When I had ordinary ME there were no trigger points or areas that needed to be released or relieved for relaxation. That is maybe why I didn't find Osteopaths, Chiropractors helpful for my ME symptoms.

I did have massage and did other things but relaxation was easy then so if I didn't have massage etc it wasn't a problem.

The all-over flu ache in my muscles (with some specific points) didn't respond to the hands on treatment and it could flare it up worse.

Massage and the Osteopaths however could stir up PEM type problems because what they did felt like exertion to me. That is apart from the cranial work where the only PEM was through travelling to see them and back. Relaxing but not therapeutic as far as I could see.

I've often wondered in my case if the Osteo/Chiro/massage could have added to the inflammation?

That certainly seemed to be the case when I went back for treatment after a road traffic accident (and only after that had the specific painful points like the ones in Fibromyalgia). The more they tried to "release" the tender points the more painful they got and the all over pain increased. It wasn't until I found someone who did the same work with needles that I felt any pain relief in these new painful trigger points.

I was lucky in that for the first 20 years of ME I had no problem relaxing and no structural type problems that needed someone to work in this.

Can see that if someone was tense and couldn't relax how massage or an Osteopath/Chiro could help but the downside is if they stir up inflammation.

This is not directed at James. Just sharing my own experiences.

 

[Snowdrop]

I don't think anybody here has claimed 'release' so far from massage.
Certainly when I had massage early on (one of the first things I tried) it actually made me feel worse.
At the time I thought that that was maybe a good sign.

 

[Snowdrop]

Hi @james7a

I would like to ask you; how would you characterise your health presently? And how long have you been in your current state?

Also, if you don't mind, of the various treatment protocols you used are there one's that you continue to use and one's that you have discontinued? If so which one's?
Thanks,
SD

 

[MeSci]

Perhaps Phoenix Down is just questioning James's use of chiropractors to get better from M.E - perhaps Phoenix Down is just addressing this particular issue.

Personally I have tried most if not all of James's techniques over the past 20 years of my illness, including chiros and I have merely got worse. But then I have M.E and not 'chronic fatigue' as James says in this video.

I only watched the start of the first video and noticed the use of 'chronic fatigue'. If @james7a reckons he had what is defined as ME in the CCC criteria, perhaps he could add a prominent note to this effect on his channel.

This is important, as chronic fatigue is just a symptom, and can form part of the symptomatology of several illnesses, which respond to different treatments. It's not even synonymous with Chronic Fatigue Syndrome/CFS.

All-too-often the media publish articles about people recovering from 'chronic fatigue' using frankly-unbelievable methods, and within the articles they equate 'chronic fatigue' with ME.

As a result, we suffer endless comments from all and sundry that we should try the recommended treatment, when it is completely inappropriate.

I'm not saying that James's methods are unbelievable - I haven't had time to read much detail - just want it made clear what he was treating.

Some ME sufferers will just not watch any further if they perceive that James was just treating chronic fatigue and not what they have.

 

[james7a]

@MeSci to be honest I really didn't know what to call it. I had symptoms of POTS/Fibromyalgia too. I didn't just have chronic fatigue, I had a whole list of problems that were not your standard CFS. I would feel incredibly weak and my vision would blank out if I had to hold anything above my head, I went through phases of very painful muscle pains (fibro) etc. So I guess me stating that I recovered from CFS is wrong, I recovered from far more than just CFS. I read the CCC critera and had most of all of those symptoms. I will change the name of my videos to M.E?POTS instead of CFS. Whenever I used to hear people talk about CFS/ME it was typed exactly like that... ME/CFS so I just assumed they were the same diagnosis.
CCC
1. yes
2. yes. Exercise intolerant. made me feel much worse and would take 3-5 days to recover.
3. yes. Would sleep up to 14hours a day at times, then 1 hour a day for several weeks at a time. Insomnia/Hyposomnia.
4. yes experienced pain & headaches nearly on a daily basis at my worst
5. I was very clumsy and had no ability to concentrate even on things I found 'fun'. Periods of not being able to focus vision, not constantly. I'm not sure what ataxia, photophobia etc is.
6. POTS symptoms. heart palpitations almost daily.
b. Constant ice cold extremeties. worsening symptoms with stress. no appetite. eating <1500 calories a day, if that. Somedays I wouldn't eat.
c. General malaise, tender lymph nodes behind ear and sometimes in my jaw area. Developed sensitivities to foods I was fine with growing up. Gluten/dairy. I had a cold every single day.
7. Symptoms persisted since 2005. A few events I think of at the time it began, however it was a gradual decline into the more worse symptoms.

I will add that some of my symptoms were not listed in that diagnosis. For example the wired but tired feeling, flinching at little things, even ordinary sounds sounding 'too loud', electric shock feelings in arms/legs at random when moving. I was having new symptoms each year my illness went on.

@Snowdrop I've been in my current state roughly since september. My state currently is good, I tolerate exercise, no brain fog or experiencing any symptoms I had a year ago. I continue to follow my routine but I no longer see a psychiatrist (only had 3 sessions) and I no longer see a chiropractor. I will be making a video of 15 things I've changed in my daily life and that I continue to follow.

I will say that I still have some deep rooted anxiety from the past 8 years. I don't know how to deal with that yet. I will have the anxious feelings without thinking/worrying, which is hard to understand. Maybe it's because i am unconciously worried about my mum? I don't know. The only thing that i've found that helps is long walks. I'll get back to you if i get rid of it.

 

[MeSci]

@MeSci to be honest I really didn't know what to call it. I had symptoms of POTS/Fibromyalgia too. I didn't just have chronic fatigue, I had a whole list of problems that were not your standard CFS. I would feel incredibly weak and my vision would blank out if I had to hold anything above my head, I went through phases of very painful muscle pains (fibro) etc. So I guess me stating that I recovered from CFS is wrong, I recovered from far more than just CFS. I read the CCC critera and had most of all of those symptoms. I will change the name of my videos to M.E?POTS instead of CFS. Whenever I used to hear people talk about CFS/ME it was typed exactly like that... ME/CFS so I just assumed they were the same diagnosis.
CCC
1. yes
2. yes. Exercise intolerant. made me feel much worse and would take 3-5 days to recover.
3. yes. Would sleep up to 14hours a day at times, then 1 hour a day for several weeks at a time. Insomnia/Hyposomnia.
4. yes experienced pain & headaches nearly on a daily basis at my worst
5. I was very clumsy and had no ability to concentrate even on things I found 'fun'. Periods of not being able to focus vision, not constantly. I'm not sure what ataxia, photophobia etc is.
6. POTS symptoms. heart palpitations almost daily.
b. Constant ice cold extremeties. worsening symptoms with stress. no appetite. eating <1500 calories a day, if that. Somedays I wouldn't eat.
c. General malaise, tender lymph nodes behind ear and sometimes in my jaw area. Developed sensitivities to foods I was fine with growing up. Gluten/dairy. I had a cold every single day.
7. Symptoms persisted since 2005. A few events I think of at the time it began, however it was a gradual decline into the more worse symptoms.

I will add that some of my symptoms were not listed in that diagnosis. For example the wired but tired feeling, flinching at little things, even ordinary sounds sounding 'too loud', electric shock feelings in arms/legs at random when moving. I was having new symptoms each year my illness went on.

@Snowdrop I've been in my current state roughly since september. My state currently is good, I tolerate exercise, no brain fog or experiencing any symptoms I had a year ago. I continue to follow my routine but I no longer see a psychiatrist (only had 3 sessions) and I no longer see a chiropractor. I will be making a video of 15 things I've changed in my daily life and that I continue to follow.

I will say that I still have some deep rooted anxiety from the past 8 years. I don't know how to deal with that yet. I will have the anxious feelings without thinking/worrying, which is hard to understand. Maybe it's because i am unconciously worried about my mum? I don't know. The only thing that i've found that helps is long walks. I'll get back to you if i get rid of it.

I think all those symptoms are quite common in ME. Photophobia is intolerance of light. Ataxia is poor coordination and/or balance.

Anxiety can sometimes be treated through diet and supplements, so it may be due to having the 'wrong' balance of gut micro-organisms. I succeeded this way - I had been anxious all my life and taken numerous drugs for it - but it seems that all it needed was a change in diet and addition of some supplements! There are threads on the subject, e.g. this one.

Don't forget chronic fatigue is not the same as CFS - it is a general symptom that can occur with many conditions. CFS is a slightly less broad term indicating a particular illness or collection of illnesses, and ME is more specific still, although is often used interchangeably with CFS, but there is controversy over whether they are the same illness.

 

[james7a]

thanks for the link to that thread MiSci, I'm going to try that for sure. I did have light sensitivity, and my coordination wasn't as good ( I often bumped into stuff, or just flat out dropped things.. just a very clumsy feeling) but I wouldn't say it was awful. I used to black out my room because I felt better in the dark, I was like a hermit.. but I couldn't help it, it made me feel abit better.

edit: nm I saw your profile

 

[chipmunk1]

Maybe it's because i am unconciously worried about my mum?

you are entering quack territory here. it is helpful to stay away from that as far as possible IMO.

 

[Snowdrop]

Whenever I used to hear people talk about CFS/ME it was typed exactly like that... ME/CFS so I just assumed they were the same diagnosis.

@james7a

Your confusion is quite understandable. There is a lot of controversy over what ME/CFS stands for. The issues are political.
To say that you suffered from a lot more than CFS however would be taken badly potentially since CFS is the official American designation for the illness (up until February 2015/ the illness is now officially SEID systemic exertion intolerance syndrome).

Most people with ME/CFS/SEID whatever you want to designate it have the hallmark symptom of Post Exertional Malaise (PEM).
Within that group there are those with Mild/moderate/severe symptoms on a spectrum and virtually all suffer a great many other symptoms as per the CCC or ICC. So to say you have more than CFS would suggest that you're implying that you have a more severe illness than those with chronic fatigue.

This is the political issue and exactly why the name change in the US because the illness ME/CFS/SEID is not chronic fatigue even though the name suggested such. In other words there was no really appropriate designation that could be used in the US that would be officially acknowledged. If an American said they felt they had the symptoms of ME no ME existed as far as US medical authorities were concerned it was a non-entity there was only CFS and it was used for the illness that is ME/and now SEID with the additional criteria. This is the illness that PR refers to the one with PEM and many other neuro/endocrine/autoimmune symptoms. Although there are people with other illnesses that also come to this site looking for information and help because our symptoms cover a lot of ground.

I hope that helps sort that out a bit for you. There are many tools, resources threads and blogs here on the topic of what is or is not ME/CFS/SEID. Like all poorly understood diseases there is a history and a development here. I hope you might find it interesting to have a look at. There is also a whole forum dedicated to advocacy. If you have recovered and remain well I and others I'm sure are happy for you that you have found something that works. This illness has also been discussed as possibly more than one illness that we're dealing with or at the very least plenty of subsets of the illness based on varying symptoms.

So as you move on with your life and are capable of doing things as a healthy and well person maybe you can remember us and spread the word that this disease is real and that we need help.

More on other related topics later.

 

[MeSci]

the illness is now officially SEID systemic exertion intolerance syndrome.

Is it? I thought that was just a proposal.

 

[Snowdrop]

@MeSci @james7a

My bad. It doesn't change the explanation of the development. But it's good to be precise.