Mild, Moderate or Severe M.E.?

[Min]

He does sound severe, poor lad, I do hope the TYMES trust are able to advise you on helping him.

On a practical note, you could buy blackuout linings for his existing curtains.

 

[zzz]

I was a bit shocked to read the CCC/ICC descriptions because I'd considered myself moderate, but it looks like I've been "severe" over the past year or two.

Yep, that's severe for sure. Sorry about that.

New study coming up: ME patients underestimate the extent of their disability!

I'm sure Simon Wessely would just love that one...

 

[xchocoholic]

Hi again,

I had a but of a Eureka moment tonight and it wasn't very pleasant so I thought I would check out with your guys what you think.

If anyone had asked me before tonight what level ME my young lad had I would have said 'moderate' but now I'm actually beginning to wonder if I'm in denial and he has a more severe form of the illness.

I know you can't 'diagnose' him but just, based on your experiences, what do you think?

- He hasnt been able to leave the house for a number of months
- He doesnt see any friends at all
- He rarely leaves his bedroom except most days to come down for dinner, then he goes back up. Some days he just can't make it down so he has his dinner in his room.
- He sleeps all day mostly til about 5pm - he doesnt sleep at all during the night
- He has no energy to do anything at all except come down the stairs maybe once or twice a day
- He has joint and muscle pains now all the time
- He can't bear light - his room is like a cave and he asked me could I get darker curtains for it
- The mere thought of having to leave the house for a doctor or hospital appointment sends him into a spin. If the appointment is in the morning he tries not to fall asleep because he knows he struggles really hard to wake up again. Late evening appointments are a bit better - but not much
- He hasnt been able to attend school at all since January of this year and even then it was only for a few half days. He has effectively missed two whole years of school

I am so worried that he is developing a severe level of this disease but I just don't know. Last week I had made an appointment with his GP to get her to check balance issues he has been having and he couldnt make the appointment even though it was at 5pm in the evening. I would have had to drag him out of the bed and bring him down - in tears....

Any insight would be appreciated

Thanks

Hi Joan,

What documented physical symptoms does your son have ?
Has he had allergy testing ? pmttt ? Rhomberg ? Neuropsych ?
Are his muscles in spasm ? Trigger point test for fibromyalgia ? Etc ? Etc ?

Your list consists mainly of behavioral issues (antisocial) that are commonly seen in teenagers. He may be depressed due to his illness. A therapist should help.

Tc .. x

 

[NK17]

@JoanDublin I'm truly sorry to hear about your young son.
No illness is fair to the sufferer and the carer, but ME is the worst of the worst.
To me he sounds like having a severe form. I wish I could be of any help.
Sending you all my best thoughts.

 

[heapsreal]

Sounds severe to me, he is mostly bed bound by the sounds of it. And his symptoms are high with sleep issues and pain as well as fatigue

Those cfs/me function type charts use as a guide only, i dont think they are 100% accurate. They measure function but it doesnt measure pain and suffering, which can come down to once pain tolerance, amount of sleep one can live off before this effects them etc etc. alot of variables.

For your own guide compare what it does with his symptoms to another buy his age and do this every 6 months. This may give u an indication if things are improving or not, maybe do it more frequently if you want.

These scales dont take into variability of sypmtoms on a daily basis either.

Did he get some more blood work done? anything ti help with pain?

 

[JoanDublin]

Hi Joan,

What documented physical symptoms does your son have ?
Has he had allergy testing ? pmttt ? Rhomberg ? Neuropsych ?
Are his muscles in spasm ? Trigger point test for fibromyalgia ? Etc ? Etc ?

Your list consists mainly of behavioral issues (antisocial) that are commonly seen in teenagers. He may be depressed due to his illness. A therapist should help.

Tc .. x

Hi there

I posted recently about his symptoms. Here's a link:

http://forums.phoenixrising.me/inde...you-suggest-for-my-14-yr-old-young-lad.31386/

Surprisingly he isn't depressed - just understandably fed up with being sick. I am currently working with his GP to get tests carried out which I believe he should have had done already. She's starting with the neuro issues. He was originally diagnosed with Post Viral Illness through our local hospital but after almost two years and several specialists this has been confirmed as ME by Dr. Nigel Speight in the UK. He does see a therapist, at my insistance, and psychological/psychiatric causes/issues have been ruled out.

 

[JoanDublin]

@JoanDublin I'm truly sorry to hear about your young son.
No illness is fair to the sufferer and the carer, but ME is the worst of the worst.
To me he sounds like having a severe form. I wish I could be of any help.
Sending you all my best thoughts.

Thank you NK. Having a place like this to get advice, guidance and just plain old fashioned support helps enormously. Thank you for your kind wishes

 

[JoanDublin]

@Gingergrrl43 I think I will have to talk to the doctor about other sleep options. The problem is he tends to have quite severe reactions to medications (that's only since he got ill) so I'm worried about trying anything. More to the point, so is he. He ended up in hospital with a severe, uncommon reaction to a migraine tablet which enlarged the blood vessels in his neck and caused him excruciating pain and stiffness for almost 24 hours. I havent yet decided about KDM. I have a bit of advocacy work to do around it and also have to consider if he would be able for the travel. Will let you know what I decide!

 

[NK17]

Joan since you mentioned that your son has been diagnosed by Dr. Speight, is there any possibility for Dr. Speight to coordinate therapies with any ME- friendly local GP?

Have you tried to contact Invest in ME and/or TymeTrust?

I really feel for you and your young one. Seeing your child suffering and having a very hard time in finding any serious medical help is a crime against humanity.

 

[JoanDublin]

Joan since you mentioned that your son has been diagnosed by Dr. Speight, is there any possibility for Dr. Speight to coordinate therapies with any ME- friendly local GP?

Have you tried to contact Invest in ME and/or TymeTrust?

I really feel for you and your young one. Seeing your child suffering and having a very hard time in finding any serious medical help is a crime against humanity.

It's not possible because his consultation with Dr. Speight was a once off as he was brought to Ireland by the ME Trust here to see a number of younger patients. So the consultation was advisory, if you know what I mean. He did write a lovely letter to my son's GP with some advice and suggestions for treatment but at the end of the day he doesnt have jurisdiction here. Mind you, I have considered writing to him to let him know how my son is doing and get his guidance for my GP on further testing, etc. Not sure how he would respond, but no harm in asking! He was the one who suggested the Melatonin to the GP but unfortunately because of side effects we have had to stop it. It wasn't working anyway, to be honest. Tymes Trust also covers the UK, not Ireland. They have sent me useful literature though

 

[NK17]

I see all the complications and issues (different jurisdictions etc.), but I'd suggest that you stay in touch with Dr. Speight and ask for his kind advice.

So sorry to hear that your son reacted badly to melatonin. Many years ago when I didn't know I had ME and I was in a bad phase of sleep problems, melatonin really helped me and still does to these days.

Sending you all my best thoughts again .

 

[Valentijn]

@JoanDublin - Something some of us find helpful for sleep is NAC - N-acetylcysteine. If he has trouble sleeping even though he's exhausted because his brain keeps buzzing, it might be due to excess glutamate. NAC helps to use up the glutamate by combining with the glutamate (plus glycine) to create glutathione, a generally useful substance.

Some do better with NAC supplementation, some with just glycine supplementation, and some with both. And some don't react well to either of them. But they're pretty harmless amino acids which don't really have a risk of side effects, except kidney stones if already susceptible to getting cysteine-based kidney stones.

 

[xchocoholic]

Hi @JoanDublin

Sounds good. I posted because I feel bad that he's unable to spend time with his peers. That's gotta be very hard on him. I have 2 kids, grown now, who would've gone nuts if they'd been separated from their peers.

Is he up for company ? Even for short periods. Teenagers never turn down food and video games.

Maybe his old friend's Mothers would help.

Hope he feels better soon. Tc .. x

 

[Gingergrrl]

@Gingergrrl43 I think I will have to talk to the doctor about other sleep options. The problem is he tends to have quite severe reactions to medications (that's only since he got ill) so I'm worried about trying anything. More to the point, so is he. He ended up in hospital with a severe, uncommon reaction to a migraine tablet which enlarged the blood vessels in his neck and caused him excruciating pain and stiffness for almost 24 hours. I havent yet decided about KDM. I have a bit of advocacy work to do around it and also have to consider if he would be able for the travel. Will let you know what I decide!

@JoanDublin That makes sense and I have become much more sensitive toward meds since becoming ill too. I often take tiny micro doses of what other adults would take yet they work for me. My ND thinks my liver can't process the higher doses and I wonder if something like that could be going on with your son?

I'm not saying to retry Melatonin since he reacted badly but maybe if your doc gives some other sleep remedies, to start them really slow and build them up.

Good luck with your decision to see KDM and I know there are many variables involved like you mentioned w/foster care system. I agree with @NK17 re: keeping in touch w/Nigel Speight if possible.

I also love @xchocoholic idea re: inviting a friend over in the evening when your son is feeling better to play video games. Even if he does not move from couch it might brighten his spirits in the moment.

 

[Gingergrrl]

It sounds like he's "severe" but not "very severe".

I was a bit shocked to read the CCC/ICC descriptions because I'd considered myself moderate, but it looks like I've been "severe" over the past year or two. New study coming up: ME patients underestimate the extent of their disability!

@Valentijn That is a really interesting point and I bet many of us consider ourselves "Moderate" who are actually "Severe" by some of the scales. For me it depends which scale I am looking at and how they define "no symptoms at rest" and "exercise." Is rest only lying flat on your back in bed and does any activity or exertion count as exercise? Some of the scales are too vague for me to interpret!

 

[JoanDublin]

Hi @JoanDublin

Sounds good. I posted because I feel bad that he's unable to spend time with his peers. That's gotta be very hard on him. I have 2 kids, grown now, who would've gone nuts if they'd been separated from their peers.

Is he up for company ? Even for short periods. Teenagers never turn down food and video games.

Maybe his old friend's Mothers would help.

Hope he feels better soon. Tc .. x

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.

 

[zzz]

@JoanDublin - It's quite common for people with ME to develop reactions to medications, and it's possible to lose tolerance to medications even without ever having taken them. This is often known as Central Sensitivity Syndrome, where the "Central" refers to the central nervous system.

Dr. Cheney theorizes that this is due to oversensitivity of the NMDA receptors in the brain; such oversensitivity is posited by many of the top researches, even when it's not central to their theories. Dr. Cheney recommends a combination of Klonopin (to up-regulate the GABA receptors) and magnesium (to down-regulate the NMDA receptors). Both drugs have the beneficial property of improving sleep. Magnesium is especially good at this, and may be able to help the sleep reversal problem.

Since your son is so sensitive to medications, you need to start with a very small amount of each to see if he'll tolerate them. If he does, higher doses can be used. Specifically, the magnesium is really helpful here, but it's hard to get a sufficient amount from supplements, as much of it passes straight through the body. For most people, Dr. Sarah Myhill recommends magnesium injections, or magnesium via nebulizer. She's considered by many to be the best ME specialist in the U.K., and she can help you get treatments that you can't get from your GP. I'd strongly recommend getting in touch with her.

 

[JoanDublin]

@JoanDublin - It's quite common for people with ME to develop reactions to medications, and it's possible to lose tolerance to medications even without ever having taken them. This is often known as Central Sensitivity Syndrome, where the "Central" refers to the central nervous system.

Dr. Cheney theorizes that this is due to oversensitivity of the NMDA receptors in the brain; such oversensitivity is posited by many of the top researches, even when it's not central to their theories. Dr. Cheney recommends a combination of Klonopin (to up-regulate the GABA receptors) and magnesium (to down-regulate the NMDA receptors). Both drugs have the beneficial property of improving sleep. Magnesium is especially good at this, and may be able to help the sleep reversal problem.

Since your son is so sensitive to medications, you need to start with a very small amount of each to see if he'll tolerate them. If he does, higher doses can be used. Specifically, the magnesium is really helpful here, but it's hard to get a sufficient amount from supplements, as much of it passes straight through the body. For most people, Dr. Sarah Myhill recommends magnesium injections, or magnesium via nebulizer. She's considered by many to be the best ME specialist in the U.K., and she can help you get treatments that you can't get from your GP. I'd strongly recommend getting in touch with her.

I have looked up Dr. Myhill's website but they only do tests for those living in the U.K. with the exception of the mitochrondial function test. I live in Ireland

 

[Gingergrrl]

I have looked up Dr. Myhill's website but they only do tests for those living in the U.K. with the exception of the mitochrondial function test. I live in Ireland

@JoanDublin I don't know if this is an option or if Dr. Myhill is still seeing new patients, but would it be easier to take your son to the UK to see her versus traveling to see KDM? I apologize if this suggestion was already discussed and I missed it!

 

[JoanDublin]

@JoanDublin I don't know if this is an option or if Dr. Myhill is still seeing new patients, but would it be easier to take your son to the UK to see her versus traveling to see KDM? I apologize if this suggestion was already discussed and I missed it!

Her website says tests are only available to 'UK residents' so I presume that rules me out? Unless anyone has other information? It would certainly be easier to travel there and get tests done