Mild, Moderate or Severe M.E.?

[Gingergrrl]

@JoanDublin I wish I knew the answer but am in the U.S. I am sure someone in the U.K. will see this shortly and be able to advise you re: Sarah Myhill.

 

[SeaShell]

@JoanDublin Just looking at various possibilities that can aggravate the condition.
Does your son's room have a lot of electrical equipment - computer, phone, cables running around the room?
Can he sleep in another room, maybe in another part of your house for a few days as a test?

What's his diet like? You may have posted this elsewhere.

 

[brenda]

I believe that Dr M is not taking on new patients anyway.

 

[xchocoholic]

Unfortunately he doesnt want to see any of his friends. He is embarrassed because of the bowel issues he has and he doesn't want to 'expose' the fact of how sick he is, so in his teenage head its better to avoid them coming over. He often spends an hour or two on the toilet when he has to use an enema so I can't really blame him for not wanting his friends over. He has made an online friend from the UK that he has remained in constant contact with now for almost two years. He suspects this young lad also has an illness which prevents him from attending regular school plus he also has reverse sleep patterns. But boys being boys, they NEVER speak of it! Still, he does talk to him regular through the gaming site they use so at least he communicates with kids his own age.

Hugs. Motherhood can be so trying.

My DD had health problems as a child so I saw some of this behavior from her too. Her health problems have mostly resolved , 99%, via diet change, avoids intolerances and garbage, and regular exercise.

Teens embarrass easily. Heck, I don't speak about my bowel issues to most people. But ... I have chronic constipation and would be blocked all the time if I didn't use magnesium citrate. Natural Calm brand. I've tried everything. Diet, oils, etc.

I adjust the dose constantly depending on my stools but typically 1 tsp in 8 oz of hot water at night works. To eliminate a blockage I'd use 1/2 tsp every few hours until my stools normalized. Your stools will get watery if you get too much but imho after a blockage that's a good thing as long as it's temporary.

I know if that doesn't work for me, suppositories are needed. Either glycerin suppositories or even some coconut oil work. Both only take 5-10 minutes.

I was told that enemas alter the flora in our bowels and should be avoided. They always worked for blockage but avoiding blockage is easier.

Hope he feels better soon. Tc .. x

 

[JoanDublin]

@JoanDublin Just looking at various possibilities that can aggravate the condition.
Does your son's room have a lot of electrical equipment - computer, phone, cables running around the room?
Can he sleep in another room, maybe in another part of your house for a few days as a test?

What's his diet like? You may have posted this elsewhere.

Hi SeaShell
He does have his laptop in his room. We have wifi in the house as well. He also has cable TV although he rarely uses it. I have a caravan which is permanently sited outside the city and I go there as much as possible at weekends when he is able to travel. Unfortunately I haven't noticed any difference to his sleep patterns and there is no wifi or computer there. It's in a valley and wifi signal can't be generally accessed.

The access to the wifi keeps him sane when he can't sleep he says. He sometimes watches things on Netflix for example or listens to his music. We have tried various things over the last couple of years and can't seem to find anything that works. Sometimes if he can't sleep, for example, he will go down to the sitting room just for a change of 'scenery' but we haven't noticed any change in his ability to sleep because of that. We also tried things like agreeing that he would try to sleep and if he was unsuccessful after an hour or two that he could get up and listen to music or watch something for an hour and then try again. Nothing seemed to work though.

It's a bit of a catch 22. Experiment in a completely cable free, wifi free and maybe electric free environment (if that's even possible in this day and age) and run the risk of him becoming more isolated, or, continue to muddle on and hope whatever has gone wrong with his system either rights itself or he just recovers?

Interestingly he had a brief period of 'recovery' for seven glorious weeks last summer. Basically what happened is that he woke up one morning and said he felt different. Like he had a bit more energy. Two weeks of this steady improvement and hey presto, his body just kicked back in to normality like nothing had happened! His bowels started functioning normally, stools were perfectly normal, sleep pattern returned to normal (he was always a great sleeper and an early riser), energy returned to almost normal, he started swimming again, going to the gym, etc etc. But then he picked up a virus after two weeks back in school and he crashed again and hasn't recovered since. Instantly the bowels stopped working, the sleep reversal came back, the vomiting returned, the fatigue and pains, etc etc. That was last September.

We have been through a lot of recorded diet experiments over the years too and even the hospital agree that his bowel condition isn't diet related. They have recorded that his diet is 'excellent' and he drinks at least two to three litres of water daily. I also recently started fermenting kefir milk grains in the hope that the probiotic drink helps. He has proved to be completely resistant to all tried and tested oral laxatives including those used for surgery prep! The hospital were pretty amazed when they supervised him on a massive concoction of various laxatives and he produced zilch, nothing, nada..... The only thing that worked was a combination of enemas : phosphate in morning and olive oil in the evening.

At his consultation with Dr. Speight in April this year, he hypothesised that the smooth muscle of his bowel has been affected by the ME. Oh I forgot to mention that he was also referred to another gastro specialist here in Ireland and he can't figure out what's causing the bowel issues either but says he hopes that it will resolve itself over time and meanwhile to continue to manage the situation with home enemas and his Peristeen anal irrigation system because the next step, if not, is a stoma and none of us want that.

As I write this it is almost 1pm here. He hasn't slept at all last night and he is staying awake all day today in the hope that he might get so tired that he will sleep at a normal time tonight. We'll just have to see.....

 

[JoanDublin]

I believe that Dr M is not taking on new patients anyway.

Crap

 

[Valentijn]

@JoanDublin - I think I forgot to mention this, but in addition to being an ME specialist and a cardiologist, Dr de Meirleir's area of focus in ME is on the gut. He does a lot of testing in that direction, in addition to testing for infections, and his theories regarding ME have been largely gut-based.

 

[xchocoholic]

Dr Rodney Ford is a pediatrician and gastroenterologist too.

Sorry to hear you've tried so much for his constipation and haven't found a solution. Not to beat a dead horse but how long did you try the magnesium citrate for ? The reason I play with the dosage is because I need a certain amount to build up in my body for it to work. Too much and I get the runs tho. But it has to build up. One or 2 doses won't work.

Blockages are tricky tho. From what I've seen these are worse the harder the stool is. Rocks are difficult to pass. Lol. These require enemas and oil. And are painful.

Keeping my stools soft is my goal. It sucks at 58. I can only imagine how it would feel to a teenager.

It's interesting that when he felt better his stools were normal.
Probiotics never worked for my C either.

Tc. X

 

[Cheesus]

Hi @JoanDublin

I am similarly ill to your son, though perhaps his worse days are closer to my better days. However I rarely have many symptoms when at rest because I cut back on my activity. I am now able to slowly start doing more and my activity levels are gradually increasing.

Is your son seeing a specialist? I'm obviously not qualified to give direct advice, but I found my specialist to be really helpful for getting my activity management sorted out. From my experience, there are a few basic things your son should consider rectifying.

One of the first things my NHS physio showed me was how much energy I was actually using despite my belief that I was resting most of the time. Netflix and game consoles (anything with a screen) are deceptively energy intensive. I had to replace these things with audiobooks and podcasts otherwise they would cause hypersensivity (i.e. from light and noise).

Anything that is stimulating for the system should be done in moderation and with a keen eye on when the body begins to protest. Symptoms are often a sign that the body is not happy doing what it is being asked to do. I now no longer suffer from noise/light sensitivity, shaking, head pressure or eye pain. Additionally my immune system has begun to sort itself out now that I'm inputting less stimuation and my tonsils have been a normal size now for 5 or 6 months. This is all coming from reducing stimulation.

Regular rest breaks are also important. I really needed complete rest interspersed with short periods of activity. By complete rest I mean lying still with eyes closed and no sound. This would be a (very) good time to take up meditation.

Additionally there is a serious issue here with his sleeping schedules. My sleep has never been this messed up, so I don't know how to advise you there. I do know the more you sleep over 10 hours the more the quality of sleep decines. I don't know if this applies.

I am 24 (it's actually my birthday) so I am a little older than your son. I appreciate it might be more difficult for a teenager to implement some of these things. As I say, this is what has worked for me, but I can't say with certainty that it is what is best for your son. We're all individuals so need to work on an individual basis. Working with a professional can be immensely helpful, though the quality of professionals varies greatly. What I do know is that finding an activity management guide (I say guide rather than plan because it is more flexible) can really make the difference.

This document might help you get some ideas for managing activity. Though, again, you needn't take it as the gospel truth, instead just see what you can extract from it.
http://www.google.co.uk/url?sa=t&rc...himCXdFJfOA-shhfT8vjbjg&bvm=bv.71198958,d.ZGU

As a final word I would say that recovery in adolescents is a lot more promising than in adults Just get a little control over things and hopefully his springy, youthful cells with spring into action (I'm banking on my cells still having a little spring in their step)

 

[JoanDublin]

Dr Rodney Ford is a pediatrician and gastroenterologist too.

Sorry to hear you've tried so much for his constipation and haven't found a solution. Not to beat a dead horse but how long did you try the magnesium citrate for ? The reason I play with the dosage is because I need a certain amount to build up in my body for it to work. Too much and I get the runs tho. But it has to build up. One or 2 doses won't work.

Blockages are tricky tho. From what I've seen these are worse the harder the stool is. Rocks are difficult to pass. Lol. These require enemas and oil. And are painful.

Keeping my stools soft is my goal. It sucks at 58. I can only imagine how it would feel to a teenager.

It's interesting that when he felt better his stools were normal.
Probiotics never worked for my C either.

Tc. X

Hi again.

To be honest I'm not sure of exactly what ingredients were in what laxatives. To give you an example of the drugs he used to help him go, they were Movicol Adult stool softener sachets (at times up to 10 a day!), dulcolax, dupholac, picolax, sennokot, glycerine suppositories. I'm pretty sure there were other over the counter things we tried as well but nothing worked except the enemas and the Peristeen.

Thing is he doesn't have classic 'constipation'. His stool isn't hard when he goes. In fact it's more likely to be soft. This year there has been a change in that every now and again (maybe every four or five weeks) he suddenly manages to do a voluntary bowel movement. I know, I know....don't ask me! And when he does it's normally perfectly formed stool - not runny and not hard.

He is a bit of an enigma and has all the docs here puzzled.

He also takes prune juice daily. Sometimes takes fresh squeezed orange juice as well.

He was taking the medications for about 16 to 18 months and they were having no effect so eventually he just refused to take them anymore. To be frank, it has made not a bit of difference whether he takes them or not, except that he feels worse when he takes laxatives because all that happens is that he gets dreadful cramps and yet produces nothing. So you can see why he feels there is no point at this stage.

The best guess I can make is that the peristalsis motion has been adversely affected by his ME. Even the gastro consultant agreed that this was a possibility but one which he had no way of knowing for sure.

He also had a rectal biopsy carried out and a contrast enema and this all appeared normal.

 

[JoanDublin]

Hi @JoanDublin

I am similarly ill to your son, though perhaps his worse days are closer to my better days. However I rarely have many symptoms when at rest because I cut back on my activity. I am now able to slowly start doing more and my activity levels are gradually increasing.

Is your son seeing a specialist? I'm obviously not qualified to give direct advice, but I found my specialist to be really helpful for getting my activity management sorted out. From my experience, there are a few basic things your son should consider rectifying.

One of the first things my NHS physio showed me was how much energy I was actually using despite my belief that I was resting most of the time. Netflix and game consoles (anything with a screen) are deceptively energy intensive. I had to replace these things with audiobooks and podcasts otherwise they would cause hypersensivity (i.e. from light and noise).

Anything that is stimulating for the system should be done in moderation and with a keen eye on when the body begins to protest. Symptoms are often a sign that the body is not happy doing what it is being asked to do. I now no longer suffer from noise/light sensitivity, shaking, head pressure or eye pain. Additionally my immune system has begun to sort itself out now that I'm inputting less stimuation and my tonsils have been a normal size now for 5 or 6 months. This is all coming from reducing stimulation.

Regular rest breaks are also important. I really needed complete rest interspersed with short periods of activity. By complete rest I mean lying still with eyes closed and no sound. This would be a (very) good time to take up meditation.

Additionally there is a serious issue here with his sleeping schedules. My sleep has never been this messed up, so I don't know how to advise you there. I do know the more you sleep over 10 hours the more the quality of sleep decines. I don't know if this applies.

I am 24 (it's actually my birthday) so I am a little older than your son. I appreciate it might be more difficult for a teenager to implement some of these things. As I say, this is what has worked for me, but I can't say with certainty that it is what is best for your son. We're all individuals so need to work on an individual basis. Working with a professional can be immensely helpful, though the quality of professionals varies greatly. What I do know is that finding an activity management guide (I say guide rather than plan because it is more flexible) can really make the difference.

This document might help you get some ideas for managing activity. Though, again, you needn't take it as the gospel truth, instead just see what you can extract from it.
http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=7&ved=0CFQQFjAG&url=http://www.me-cfs-treatment.com/wp-content/uploads/2013/03/Get-Well-Guidelines-Revised-2012.pdf&ei=5tPLU8HdIKfo7Aax4IGYBw&usg=AFQjCNHQphXhimCXdFJfOA-shhfT8vjbjg&bvm=bv.71198958,d.ZGU

As a final word I would say that recovery in adolescents is a lot more promising than in adults Just get a little control over things and hopefully his springy, youthful cells with spring into action (I'm banking on my cells still having a little spring in their step)

Thanks for that link. I will have a good look through it. Sorry to hear you have been so unwell

He isn't seeing a specialist for ME cos such a thing doesn't exist here in Ireland I'm afraid, so I'm relying on my own research, instincts and advice from people on forums like this to do the best I can. I'm also trying to educate his doctors along the way, but that's a whole other post! Lol

Thanks again for the advice and the link and a great big Happy Birthday to you!

 

[xchocoholic]

What a bummer. Obviously mag citrate isn't going to help if his stools are normal consistency.

In case you haven't seen it, I've seen peristalsis problems linked to dysautonomia. The DINET forum may have some tips you can use.

I've found going for walks helps my peristalsis. It's not so good for pem tho.

Tc .. x

 

[Gingergrrl]

@Cheesus Happy birthday to you as well!

@JoanDublin I forgot if I already asked this question but are there naturopaths in Ireland (ND's) who could test your son for food sensitivities (US Biotek Lab does a very good test) and stool sample tests, SIBO, and Leaky Gut? I am trying to think of things that the traditional docs do not run but the ND's do (at least in the US.)

 

[JoanDublin]

@Cheesus Happy birthday to you as well!

@JoanDublin I forgot if I already asked this question but are there naturopaths in Ireland (ND's) who could test your son for food sensitivities (US Biotek Lab does a very good test) and stool sample tests, SIBO, and Leaky Gut? I am trying to think of things that the traditional docs do not run but the ND's do (at least in the US.)

Yeah there are some but I'd say its much more plentiful and sophisticated in the US. He's had a few therapies like acupuncture, rolfing & cranial sacral therapy but I haven't got any food sensitivity tests done yet. Caught between landing out money for stuff like that now and looking at the long game of saving up so I can get a more comprehensive range of testing done with someone like KDM.

 

[zzz]

@JoanDublin - I've been looking through your posts, trying to find a clue as to what's really going on here. As I looked through your other thread that you linked to, one thing jumped out at me:

17. Regular bouts of nausea interspersed with vomiting now and again (sometimes smells of faecal matter)

For fecal matter to be present in vomit implies more than slow motility - it implies reverse peristalsis, a known phenomenon.

The underlying condition here would be SIBO - small intestinal bacterial overgrowth. This can happen when bacteria from the large intestine, which form the bulk of feces and are responsible for its characteristic smell, make their way into the small intestine, which is relatively sterile. All sorts of nasty things can happen at this point, including dysbiosis. Bacteria that have migrated from the large intestine can produce hydrogen and methane. Research conducted by Mark Pimentel, MD, director of the gastrointestinal motility program at Cedars-Sinai Medical Center and author of A New IBS Solution, indicates that increased intestinal transit time associated with methane isn’t due to decreased motility but rather to hyperactive reverse peristalsis.

Fortunately, you can have your son do a simple breath test for the presence of hydrogen and methane. In the U.S., the test is available from Genova Diagnostics in Asheville, NC (1-828-253-0621 or 1-770-446-5483) and costs $130. Complete directions come with the test kit. If your son tests positive for either hydrogen or methane, then this is considered confirmation of a diagnosis of SIBO. First line treatment for SIBO is antibiotics, often accompanied by or followed by probiotics. It's important to emphasize that SIBO is a very treatable condition. As dysbiosis can cause a very large number of problems (including, according to some experts, ME itself), clearing it up may have a profound effect on your son's health.

But first you would need to get the breath test done. I would think you could order it from Ireland, but I'm not sure. If not, you would have to find another source for it.

I found most of this information in Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, which you can get in electronic form from Amazon for $4. (There is no print version.) Specifically, this information can be found in the section, "GUT FERMENTATION AND SMALL INTESTINE BACTERIAL OVERGROWTH (SIBO)". There is a lot of additional useful information about SIBO and its treatment here.

I hope this helps...

 

[AndyPandy]

@Cheesus happy birthday to yoooooooooooo!

 

[JoanDublin]

@JoanDublin - I've been looking through your posts, trying to find a clue as to what's really going on here. As I looked through your other thread that you linked to, one thing jumped out at me:


For fecal matter to be present in vomit implies more than slow motility - it implies reverse peristalsis, a known phenomenon.

The underlying condition here would be SIBO - small intestinal bacterial overgrowth. This can happen when bacteria from the large intestine, which form the bulk of feces and are responsible for its characteristic smell, make their way into the small intestine, which is relatively sterile. All sorts of nasty things can happen at this point, including dysbiosis. Bacteria that have migrated from the large intestine can produce hydrogen and methane. Research conducted by Mark Pimentel, MD, director of the gastrointestinal motility program at Cedars-Sinai Medical Center and author of A New IBS Solution, indicates that increased intestinal transit time associated with methane isn’t due to decreased motility but rather to hyperactive reverse peristalsis.

Fortunately, you can have your son do a simple breath test for the presence of hydrogen and methane. In the U.S., the test is available from Genova Diagnostics in Asheville, NC (1-828-253-0621 or 1-770-446-5483) and costs $130. Complete directions come with the test kit. If your son tests positive for either hydrogen or methane, then this is considered confirmation of a diagnosis of SIBO. First line treatment for SIBO is antibiotics, often accompanied by or followed by probiotics. It's important to emphasize that SIBO is a very treatable condition. As dysbiosis can cause a very large number of problems (including, according to some experts, ME itself), clearing it up may have a profound effect on your son's health.

But first you would need to get the breath test done. I would think you could order it from Ireland, but I'm not sure. If not, you would have to find another source for it.

I found most of this information in Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, which you can get in electronic form from Amazon for $4. (There is no print version.) Specifically, this information can be found in the section, "GUT FERMENTATION AND SMALL INTESTINE BACTERIAL OVERGROWTH (SIBO)". There is a lot of additional useful information about SIBO and its treatment here.

I hope this helps...

Thank you very much for that info. Thats very helpful and I am going to check out getting these tests done here in Ireland first. I will let you know how I get on. Thanks again

 

[ukxmrv]

My local NHS hopsital knows and tests for SIBO Joan so maybe your hospital in Ireland may have something similar?

Have you ever considered seeing Dr Weir, he was working sometimes in a hospital in Northern Ireland I think? Plus Dr Enlander visits Ireland (not sure which parts though) from time to time. Dr Weir does do visits to the patients home. He doesn't offer much in the way of testing but could be the person to get involved to co-ordinate tests with your local hospital.

Just a few ideas.

Dr. William Weir
10 Harley Street
London W1G 9PF
Tel: 020 7467 8478

http://www.enlander.com/

 

[Izola]

He was put on Melatonin just recently and had a bad reaction to it - severe stomach pains which had him crying. He has severe bowel problems with his ME and is well used to abdominal discomfort and he says it was way beyond that level of pain. His GP took him off the tablets and the pain resolved within about 36 hours

I am so sorry for you and your son for him to have this awful disease. It is so much harder for the young.

I also can't sleep without assistance, but once asleep find it is hard to wake up fully.

I am pretty much bed bound but need to be up one day a week for my doctor visit and pharmacy stop which is all accompanied by hellish pain and agony. I have found that the more I sleep, the better I can feel on hell day. It also diminishes, a bit, the PEM.

Taking medicine or supplements in tablet form is like dropping a knife into my stomach. But I have found that I can handle some gel tabs. I take NATURE"S BOUNTY gel tab melatonin, 5 mg.

I also take a small dose of doxipin for sleep which also helps with pain, and small dose of clonazapam for (mostly muscle) seizures which also helps with sleep and pain. These were originally scripted to me by a specialist who knew about M.E. I do not know current M.E. expert thought on them.

After my doctor appointment, I sleep or doze through the next 3-5 days. The sleep has also helped with my crushing headaches so I know it is helping my body fight the M.E.

I hope things get better for your dear son. Izola

 

[NK17]

@JoanDublin after reading all the posts and suggestions I'm starting to think that your goal of saving and somehow bring your young dear son to be seen and tested by KDM, in light also of his major GI problems and KDM focus on those, is the wisest thing to do. Certainly a very difficult, expensive and complicated one, but probably the best solution.

If any patient here on PR is in close strict contact with KDM, can they try to talk to him about Joan's son situation? Maybe arrange a phone consultation? If I was one of his patients I would try to do it. I'm not saying it's going to be easy, but we should try.

I second what @Gingergrrl43 said about SIBO and Mark Pimentel testing and treatment. The only problem being that you might not have any GI doctor in Ireland knowledgeable about it. I was very lucky to have a previous GI dr. who worked with Dr. Pimentel. I got tested and got a DX of SIBO. Treated it with strict Gaps diet (no food that can ferment and/or remain too long in the small bowel and no after or in between meals snaking + a course of Xifaxan and Flagyl) on top of the usual elimination of gluten and casein etc etc etc.
My main problem was constipation, after the Abx treatment a year ago and strict diet adherence I'm much, much better.

I also think that true ME being a neuro-immune disease can impact all nervous systems departments, crippling the peristalsis and all muscles (smooth and non smooth) in a major way. Very similar to what PWMS experience.

I would suggest, if possible, warm baths in Epsom salts, can't hurt your son's magnesium intake (via the skin) and with overall muscle relaxation. I find them very calming and soothing. Luckily I have a bathtub .

Finally I'd like to wish a very happy belated birthday to @Cheesus !