30 years of ME, struggling to cope please help

[Michelle Henshaw]

Hi, I am Michelle, it is a long time since I have been on a forum but I am struggling to deal with ME and need to know what I can do and how many others are like me. I feel like I am losing my mind! Brief history, I was 22 when I had a throat infection and never really recovered. I wasn't particularly ill with the infection, didn't stay off work. After though I just struggled, over the next 2 years went from full-time to 4 days, 3, 2 then work gave me an ultimatum of full time again or leave! Specialist said leave. Well I have gradually continued to deteriorate over the last 30 years, I am mainly housebound and use a wheelchair if I do get out, have done for 20 odd years. I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I now live in France, I also believe I have POTS so thought maybe treating that could help, but I hate seeing doctors as they are always dismissive and angry because I use a wheelchair. Stupidly I thought a POTS specialist might be more understanding, he wasn't! Saw him in July, he was also angry that I take Dihydrocodeine, obviously I must be addicted! He said it is highly unusal to have CFS for 30 years (he was annoyed when I disagreed and told him I hate the term CFS and that I was diagnosed with ME) The appointment caused a 2 month long crash and really messed with my head as he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning, this despite only having a cursory examination. My resting heart rate is only 50, but standing even for a few minutes has my HR over 120, of course he would not believe my resting HR was so low because it didn't go lower than 90 when I was in the appointment for obvious reasons, I was v upset by him, angry and close to tears, and he only had me lie semi prone on the couch for a few minutes whilst examining me before doing a 10 minute stand test. Even just sitting in the wheelchair without my legs raised has my HR way up. I have been using a HRM for years so I know what my resting HR is, but he didn't like that I used that either. Is this all my own fault? He has suggested lots of tests but I never want to see him again.

I am drowning in lost years, every day I do so little and it feels that my life is pointless, my husband has gradually taken over all the household chores, so I am not needed for anything now, and mainly just go from bed to the settee and accomplish very little on a daily basis. I always feel ill and fluey and doing anything feels like a gargantuan effort, but obviously when I am in a crash then I feel even more ill in every way and I am just in survival mode. On those extremely rare days when I don't feel quite so hideously ill, I am eager to do things, but I just can't sustain anything and always crash, even if I just sit outside for too long. Even just being too happy usually causes a crash. My crashes often hit full on 2 or 3 days later so I think I have gotten away with things, and then boom!

Dihydrocodeine can help me push through the symptoms a little, but obviously its only masking the symptoms and it mainly only just takes the edge off the pain and the fluey feelings. Losing both my parents in the last few years hasn't helped, my Dad to Covid last year was traumatic. Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me. We don't spend time with friends or family anymore as it is just too difficult, makes me ill and it is just easier not to try, as no one understands I really can't cope with more than 15 minutes of visits. I want to get some life back but it just feels impossible. I now also have osteoarthritis and osteopenia, again an angry doctor took one look at my wheelchair and ME diagnosis and told me its my own fault at my age (52) because I am so inactive.

How many of you have been ill this long and have deteriorated. The ME Association prognosis says it is unusual to continue to deteriorate, is that true? I just wish there was a definitive diagnostic test so I would know if I am genuinely ill or have I somehow done this to myself like Doctors keep telling me I have? I feel sick at the thought I am responsible for ruining my life and my husbands, I never imagined I would still be ill, never mind more ill, 30 years later! Thanks for reading this, sorry it is so long and also I am not sure if I have put it in the right section.

 

[Wayne]

I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I feel sick at the thought I am responsible for ruining my life and my husbands

Hi @Michelle Henshaw -- I read your whole story, which is unfortunately so similar to many other stories I've read. Not too much that I can offer on practical advice to possibly somehow get better. But from what you say about trying so many treatments over so many years, it sure sounds to me like you did your best to be proactive about finding solutions for yourself, and in turn your husband as well.

Given your persistent efforts over so many years, I would encourage you to lay to rest the notion that you have somehow ruined your life, or your husbands. Don't let the unfounded disrespect from clueless doctors color how your look at your life, or your courageous efforts to do the best you could for yourself.

I can see that from cyberspace how heroic your efforts have been, even though your doctor couldn't see it right in front of his eyes. I guess he wasn't trained to do that. How's that for trying to put the most generous twist on his fairly deplorable behavior.

 

[Creekside]

I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

Finding something that works is a matter of luck. In my 20+ years I have found three treatments that did make a big improvement in my quality of life ... and two were already in my kitchen, and I just had to notice that they worked. One was cumin (cuminum cyminum), which blocked my physically-induced PEM (but not the cognitively-induced PEM) 100%, and after ~2 years of that, it seems to have permanently cured that symptom. Unfortunately, no one else has reported major benefits from cumin, and only a few have reported minor benefits.

Iodine also provided a significant reduction in my ME symptoms, and each dose lasted a consistent 21 days. T2 (3-5 diiodothyronine) had exactly the same effect, so the iodine was probably boosting endogenous T2 production. T4 and T3 supplements did not provide that effect.

LDN was the third treatment, and that successfully blocked my neuropathic pain, but didn't affect other ME symptoms. After a year or so on that, I no longer had those pains, so I didn't need the LDN. Sadly, the pains returned when a new food sensitivity developed recently, but LDN is helping with that again.

I discovered several other treatments what worked for one or more symptoms for a period of weeks or months. Several worked well, but only for the first few doses, and then stopped working ever again.

So, it is possible to find treatments that work. I consider finding three very effective ones in 20+ years to be quite lucky. I've heard of other people who tried many more treatments and didn't get lucky with any of them. I see treatments for ME as similar to a lottery: there's only a tiny chance of winning, but you can increase the chances by buying lots of tickets, and you can guarantee you won't ever win by never buying a ticket.


I've encountered useless and hostile doctors too. I gave up one the medical system. If you've had all the possible tests for alternative diseases, I don't see any point in continuing, except to ask one for a prescription for a treatment that you decide is worth trying. No doctor knows the mechanism of ME, so any treatment they propose is only a guess. You can guess at treatments too, without the hassle of going to see a hostile doctor.

Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me.

ME changes over time. There are things that I could do before that I don't have the push to do now. Another factor may be that experience has convinced me that trying to push harder isn't going to help. It's not your personal failure, it's just the disease at work. You can't 'push harder' if the 'push harder' part of your brain isn't functioning properly. I believe that ME is primarily a neurological disorder, with certain brain cells not functioning as they should (which cells to which degree depends on the individual), so that affects the 'push harder' part too.

as no one understands I really can't cope with more than 15 minutes of visits.

I do understand that. I find socializing takes a lot of cognitive processing, and I can't do that for long. Back when I still had PEM, sometimes only a few minutes of chatting was enough to trigger PEM. If your experience is that socializing makes your ME worse (or triggers PEM), then you need to avoid it. I suggested a t-shirt slogan for people who get PEM from socializing: "Talking to you makes me sick". Sad, but true.

I feel sick at the thought I am responsible for ruining my life and my husbands,

No, you didn't ruin things; ME did. It's no different from cancer, Alzheimer's, or any other disease that we have no choice in. No one told me how to avoid developing ME. If you have deteriorated physically because of the physical limitations of ME, that's ME's fault too. ME doesn't let most of us do the physical activities we should do to stay fully healthy.

I never imagined I would still be ill, never mind more ill, 30 years later!

Yah, back when this started in 2001, I certainly didn't imagine that I'd still be suffering 20+ years later. Back then I was sure that if I just found the right doctor, or the right supplement, I'd get my life back. Still waiting ...

Of course, there were also the periods when I didn't imagine still suffering 20+ years later because I thought I'd give into suicide. I came close a few times. Then I discovered that niacin was inducing strong suicidal moods, so I minimized niacin in my diet, which helped. I also learned that the suicide prevention services had no reluctance to tell a suicidal patient "Sorry can't help you." My guess is that they only help if you fit into one of the easy-to-solve categories, such as relationship problems, job loss, etc. "Chronic disease? Sorry, can't help you."

Yes, here I still am, suffering still, hoping to find another treatment that works, and waiting for researchers to find something useful.

In my 20+ years of ME, I did have several abrupt temporary full remissions, which is snapping from the full ME state to the full non-ME state ... and unfortunately back to full ME again. However, that convinced me that ME is treatable, and that it might even be fully treatable in a matter of hours. Take the right pill, and maybe an hour later you'd snap completely out of the ME state, and could go back to your normal life. Some normal exercise might be needed to recover full physical fitness.

It is possible that someone is going to either discover the mechanism of ME, or stumble across a treatment that mysteriously works, so keep hanging on, and live within the limits that ME places on you.

 

[SarahTee]

I’m so sorry that the POTS specialist was so unhelpful. Was this someone in France?

 

[Ken Lassesen]

You may wish to consider the Microbiome approach, here is one person's experience and progress.

An ME/CFS Journey using their Microbiome – Microbiome Prescription Blog

 

[tatt]

It isnt that unusual to have ME for 30 years, I probably have but mildly at first. I've tried a lot of things too and what helps me is NAC and lots of fruit, which stops me felling suicidal most of the time, vitamin D - preferably in the form of sunshine but I supplement too - and currently hyperbaric oxygen therapy. I take omeprazole for night-time reflux and inulin to avoid constipation. Also take a calcium/magnesium supplement and I'd encourage you to take magnesium sulphate baths for the pain.

I'm not well but I've been much worse, I was almost bed bound for 3 days once and earlier this year my mind was really in a bad way. The oxygen therapy has helped me think again. My sodium levels are very high, I crave salt and figure that helps me avoid POTS.

Yes we get deconditioned - if you can do any gentle stretching, lift tin cans for weight training or use a circulation device like revivitive medic it helps. It's very hard to avoid deconditioning when too much activity knocks you back.

It's very difficult to avoid getting depressed when you are unable to do everything you want. I've learnt to manage my limitations and I keep trying new treatments in the hope they will help. I'm fortunate that antihistamine + alcohol gets me a good nights sleep now and then, something that ceased to be effective if I try and use it too often.

If you havent tried any of the things I've mentioned give them a good try, at least a month and all winter for vitamin D.

 

[Karen Fic]

Hi, I am Michelle, it is a long time since I have been on a forum but I am struggling to deal with ME and need to know what I can do and how many others are like me. I feel like I am losing my mind! Brief history, I was 22 when I had a throat infection and never really recovered. I wasn't particularly ill with the infection, didn't stay off work. After though I just struggled, over the next 2 years went from full-time to 4 days, 3, 2 then work gave me an ultimatum of full time again or leave! Specialist said leave. Well I have gradually continued to deteriorate over the last 30 years, I am mainly housebound and use a wheelchair if I do get out, have done for 20 odd years. I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I now live in France, I also believe I have POTS so thought maybe treating that could help, but I hate seeing doctors as they are always dismissive and angry because I use a wheelchair. Stupidly I thought a POTS specialist might be more understanding, he wasn't! Saw him in July, he was also angry that I take Dihydrocodeine, obviously I must be addicted! He said it is highly unusal to have CFS for 30 years (he was annoyed when I disagreed and told him I hate the term CFS and that I was diagnosed with ME) The appointment caused a 2 month long crash and really messed with my head as he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning, this despite only having a cursory examination. My resting heart rate is only 50, but standing even for a few minutes has my HR over 120, of course he would not believe my resting HR was so low because it didn't go lower than 90 when I was in the appointment for obvious reasons, I was v upset by him, angry and close to tears, and he only had me lie semi prone on the couch for a few minutes whilst examining me before doing a 10 minute stand test. Even just sitting in the wheelchair without my legs raised has my HR way up. I have been using a HRM for years so I know what my resting HR is, but he didn't like that I used that either. Is this all my own fault? He has suggested lots of tests but I never want to see him again.

I am drowning in lost years, every day I do so little and it feels that my life is pointless, my husband has gradually taken over all the household chores, so I am not needed for anything now, and mainly just go from bed to the settee and accomplish very little on a daily basis. I always feel ill and fluey and doing anything feels like a gargantuan effort, but obviously when I am in a crash then I feel even more ill in every way and I am just in survival mode. On those extremely rare days when I don't feel quite so hideously ill, I am eager to do things, but I just can't sustain anything and always crash, even if I just sit outside for too long. Even just being too happy usually causes a crash. My crashes often hit full on 2 or 3 days later so I think I have gotten away with things, and then boom!

Dihydrocodeine can help me push through the symptoms a little, but obviously its only masking the symptoms and it mainly only just takes the edge off the pain and the fluey feelings. Losing both my parents in the last few years hasn't helped, my Dad to Covid last year was traumatic. Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me. We don't spend time with friends or family anymore as it is just too difficult, makes me ill and it is just easier not to try, as no one understands I really can't cope with more than 15 minutes of visits. I want to get some life back but it just feels impossible. I now also have osteoarthritis and osteopenia, again an angry doctor took one look at my wheelchair and ME diagnosis and told me its my own fault at my age (52) because I am so inactive.

How many of you have been ill this long and have deteriorated. The ME Association prognosis says it is unusual to continue to deteriorate, is that true? I just wish there was a definitive diagnostic test so I would know if I am genuinely ill or have I somehow done this to myself like Doctors keep telling me I have? I feel sick at the thought I am responsible for ruining my life and my husbands, I never imagined I would still be ill, never mind more ill, 30 years later! Thanks for reading this, sorry it is so long and also I am not sure if I have put it in the right section.

My Dear Michelle,

Your account of life w ME/CFS & doctors & all the just relentless pain & frustration resonates so deeply, I am in tears of grief for myself, you, all of us.

I am 23+ years fully disabled with ME/CFS, 37 at onset, 60 now. And definitely worse in many ways. Periods of better, stable, worse, but overall, worse.

As a rule, I am essentially too unwell, or too busy putting my energy into living (ADLs) as best I can, to even think about this forum, Facebook groups, anything. But, I have wanted to ”talk” to some people who are long term and not getting better, like yourself.

I have a migraine returning this fine rainy morning and I am still recovering from something (RSV? flu? Common cold?) I caught at Thanksgiving. so I must be brief, but I would like to follow up, so I will do my best to check back soon.

For Me: I am trying to pivot from the constant trying trying trying new treatments, get better, striving. I feel like that “trying“ is making me stressed & worse. It isn’t easy to stop trying, I am most certainly NOT saying anyone should. Indeed, I will probably fail.

One of the things that keeps me going is that, through all the ups & downs in my life, when I kept it simple, paced better, had help do as much as possible for me (I can’t pace without outside hired help), when I essentially let go and just “be,” I am more content, and I improve all on my own. I mess around with a treasure trove of family photos & letters, geneology. I have a kitty, and I maintain good relationships with my nieces & nephews.

But I confess, I wish there were some commuities designed for us, or groups of us living near to each other to share the effort and the burden of this disease. It has always been most gratifying to be with those with this same disease, like the few conferences I made it to in the 2000’s.

BTW, i was diagnosed when I lived in the Washington, DC area 6 months after onset 9/23/99. I was also diagnosed w POTS early on In ‘03 by Dr Bell & now Dr Sue Levine is my specialist. The one thing that helped w, not just POTS, but all symptoms, was IV saline. When I was hospitalized in ‘11 w port infection, they kindly put me on 3 liters/day slow drip: I was racing around the halls w my iv pole I had so much energy. I did IV infusions (only 1 liter a day) for about 6 years until my second port wore out. I know it would make a huge difference, a gateway to enabling me to “try” other things or just live more, but it is extremely hard, for me, given all the other limitations (get a doc to order port, re-train for self infuse, prescriptions for every little item needed (kits are too expensive), etc.)

The only other thing that genuinely helps me is meditation (TM since 2000).

I am in almost constant pain, so I can barely think about trying IV’s again. Doctors are too busy, appointments too short. I don’t see a way through! I need help for everything. i do despair sometimes, but then I slow down, through out my list, rest, start over.

Whitney Dafoe wrote a paper on what extremely severe ME/CFS is like. He addressed the more likely numbers of all of us & severity. How there are many (most) who are too sick to get on a forum or Facebook, etc, . I believe there are 100’s, 1000’s? exactly like like you, me….long sick, getting worse. Living makes me sicker because I find it mostly impossible to stay in my envelope & take care of essentials.

Writing here instead of “nursing” a migraine.

You are not alone. I relate completely to your experiences.
kf

 

[tatt]

Accepting your limitations is a painful process and I can understand why for some when you reach that place you want to stay there. But if I had done that I would now be bed bound and barely capable of rational thought. Instead I can function at a low level but one that allows me to contribute to forums like this and also to help others online. I keep my physical activity low to keep my mental activity. I can see my family, although not too often. I still travel, again not too often but I am often better in the sun.

Your husband is still with you, there are people to whom you matter. So I would encourage you to keep trying to improve - but carefully and slowly. Take vitamin D. If already doing so try to get a blood test to make sure your levels are well above the levels medics say is "adequate". I started nac with a tiny amount, fearful it might make me worse, it is important for me. Magnesium sulphate baths reduced my pain a little when nothing else was touching it and I experienced pain so bad I would rather have been dead. Fortunately that was one time my doctor was able to help, I no longer have the pain.

This is from a recovery story on this site "I keep a Post-it near my computer screen, a copy of a graffiti I saw in Montreal. Where somebody had written “no hope”, someone else had added a K and a W to transform it to “KnoW hope”." I still KnoW hope.

 

[TVB]

Finding something that works is a matter of luck. In my 20+ years I have found three treatments that did make a big improvement in my quality of life ... and two were already in my kitchen, and I just had to notice that they worked. One was cumin (cuminum cyminum), which blocked my physically-induced PEM (but not the cognitively-induced PEM) 100%, and after ~2 years of that, it seems to have permanently cured that symptom. Unfortunately, no one else has reported major benefits from cumin, and only a few have reported minor benefits.

Iodine also provided a significant reduction in my ME symptoms, and each dose lasted a consistent 21 days. T2 (3-5 diiodothyronine) had exactly the same effect, so the iodine was probably boosting endogenous T2 production. T4 and T3 supplements did not provide that effect.

LDN was the third treatment, and that successfully blocked my neuropathic pain, but didn't affect other ME symptoms. After a year or so on that, I no longer had those pains, so I didn't need the LDN. Sadly, the pains returned when a new food sensitivity developed recently, but LDN is helping with that again.

I discovered several other treatments what worked for one or more symptoms for a period of weeks or months. Several worked well, but only for the first few doses, and then stopped working ever again.

So, it is possible to find treatments that work. I consider finding three very effective ones in 20+ years to be quite lucky. I've heard of other people who tried many more treatments and didn't get lucky with any of them. I see treatments for ME as similar to a lottery: there's only a tiny chance of winning, but you can increase the chances by buying lots of tickets, and you can guarantee you won't ever win by never buying a ticket.


I've encountered useless and hostile doctors too. I gave up one the medical system. If you've had all the possible tests for alternative diseases, I don't see any point in continuing, except to ask one for a prescription for a treatment that you decide is worth trying. No doctor knows the mechanism of ME, so any treatment they propose is only a guess. You can guess at treatments too, without the hassle of going to see a hostile doctor.



ME changes over time. There are things that I could do before that I don't have the push to do now. Another factor may be that experience has convinced me that trying to push harder isn't going to help. It's not your personal failure, it's just the disease at work. You can't 'push harder' if the 'push harder' part of your brain isn't functioning properly. I believe that ME is primarily a neurological disorder, with certain brain cells not functioning as they should (which cells to which degree depends on the individual), so that affects the 'push harder' part too.



I do understand that. I find socializing takes a lot of cognitive processing, and I can't do that for long. Back when I still had PEM, sometimes only a few minutes of chatting was enough to trigger PEM. If your experience is that socializing makes your ME worse (or triggers PEM), then you need to avoid it. I suggested a t-shirt slogan for people who get PEM from socializing: "Talking to you makes me sick". Sad, but true.



No, you didn't ruin things; ME did. It's no different from cancer, Alzheimer's, or any other disease that we have no choice in. No one told me how to avoid developing ME. If you have deteriorated physically because of the physical limitations of ME, that's ME's fault too. ME doesn't let most of us do the physical activities we should do to stay fully healthy.



Yah, back when this started in 2001, I certainly didn't imagine that I'd still be suffering 20+ years later. Back then I was sure that if I just found the right doctor, or the right supplement, I'd get my life back. Still waiting ...

Of course, there were also the periods when I didn't imagine still suffering 20+ years later because I thought I'd give into suicide. I came close a few times. Then I discovered that niacin was inducing strong suicidal moods, so I minimized niacin in my diet, which helped. I also learned that the suicide prevention services had no reluctance to tell a suicidal patient "Sorry can't help you." My guess is that they only help if you fit into one of the easy-to-solve categories, such as relationship problems, job loss, etc. "Chronic disease? Sorry, can't help you."

Yes, here I still am, suffering still, hoping to find another treatment that works, and waiting for researchers to find something useful.

In my 20+ years of ME, I did have several abrupt temporary full remissions, which is snapping from the full ME state to the full non-ME state ... and unfortunately back to full ME again. However, that convinced me that ME is treatable, and that it might even be fully treatable in a matter of hours. Take the right pill, and maybe an hour later you'd snap completely out of the ME state, and could go back to your normal life. Some normal exercise might be needed to recover full physical fitness.

It is possible that someone is going to either discover the mechanism of ME, or stumble across a treatment that mysteriously works, so keep hanging on, and live within the limits that ME places on you.

Our hearts go out to you. You mentioned brief periods of full remission. Can you account for any things that were "different" in your life prior to these remissions?

 

[Vaporization]

Katharina Voss has managed to get her two daughters into sustained remission. I follow a very similar program and am also in sustained remission.

Me versus CFS

 

[Creekside]

You mentioned brief periods of full remission. Can you account for any things that were "different" in your life prior to these remissions?

Prednisone, cumin (I assume the cuminaldehyde) and T2 were the obvious triggers for the remissions. I had a couple of temporary remissions early in my ME, and don't know what the triggers were then; possibly just random fluctuations in ME's mechanism. Each of the triggers only worked a couple of times, and then stopped having that effect. ME somehow adapted to block those triggers.

FWIW, prednisone took 5 days before it triggered my remission the first time, and 3 days the second time, and both times it lasted until I tapered off the drug. I forget exactly how long cumin took, but less than a day. T2 triggered it within an hour.

I don't have any idea how to figure out what might trigger these temporary remissions in anyone else. For that matter, I can't figure out how they triggered them in me. Other people have reported such remissions, so it's not that unusual (a poll of PR had about half the respondents reporting having had one or more). The important part about them is that it proves that ME is not a permanent degradation; it's just an abnormal state that can be switched 100% off quite rapidly, and that there are multiple ways to do it. Figuring out how to do it reliably, and how to maintain that off state is a mystery, but one that will hopefully one day be solved.

I still believe that if someone found the right chemical (or chemicals), we could take a pill and switch our ME completely off within an hour or so, and return to our normal lives again.

 

[TVB]

Katharina Voss has managed to get her two daughters into sustained remission. I follow a very similar program and am also in sustained remission.

Me versus

 

[TVB]

Thank you for posting some very interesting information. It would seem from your information and post that both you and your daughters have achieved 'remission.' Can you elaborate regarding what compounds/solutions/medicines you have used specifically with deference to the multiple ones mentioned. Can you provide contact information for the Institute and Dr.s who facilitated this, please. I think this summary will be very helpful for all patients on here (my family member included). Once again, thank you.

 

[Vaporization]

It would seem from your information and post that both you and your daughters have achieved 'remission.'

I should be so lucky to have married Katharina Voss, but alas, I am not.

Follow the link and you will find much information about how she has treated her daughters. The difference in my treatment is that instead of Tenofovir, I take a TCM formula with Aconite. Here in Japan this is highly regulated, and safe as a result. In the US, a couple people have died from it due to not being properly processed. It's a poison before being processed into a medicine.

As for contact information, you would need to come here to Japan, and the Dr.s I see know less than patients here at Health Rising. I think that's probably true everywhere.

 

[Baz493]

Michelle, Has anyone ever suggested that you try taking a really good MTHFR supplement? It's possible that the initial infection could have resulted in hyperhomocysteinemia if you have an MTHFR gene mutation. The health issues you detailed could well result from excessive homocysteine levels, homocysteinylation, increased mast cell expression in tissues, and so on. It becomes a lot like a domino effect with mast cells and histamine being produced to try to ameliorate homocysteinylation damage. Poor methylation of homocysteine, resulting from poor bonding of specific B vitamins to produce the enzymes which eliminate homocysteine, is caused by the gene mutation. https://www.medicalnewstoday.com/articles/homocysteine-levels#symptoms

 

[skandar]

Hi, I am Michelle, it is a long time since I have been on a forum but I am struggling to deal with ME and need to know what I can do and how many others are like me. I feel like I am losing my mind! Brief history, I was 22 when I had a throat infection and never really recovered. I wasn't particularly ill with the infection, didn't stay off work. After though I just struggled, over the next 2 years went from full-time to 4 days, 3, 2 then work gave me an ultimatum of full time again or leave! Specialist said leave. Well I have gradually continued to deteriorate over the last 30 years, I am mainly housebound and use a wheelchair if I do get out, have done for 20 odd years. I have tried so many treatments over the years, conventional and alternative, nothing has helped and some made me worse.

I now live in France, I also believe I have POTS so thought maybe treating that could help, but I hate seeing doctors as they are always dismissive and angry because I use a wheelchair. Stupidly I thought a POTS specialist might be more understanding, he wasn't! Saw him in July, he was also angry that I take Dihydrocodeine, obviously I must be addicted! He said it is highly unusal to have CFS for 30 years (he was annoyed when I disagreed and told him I hate the term CFS and that I was diagnosed with ME) The appointment caused a 2 month long crash and really messed with my head as he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning, this despite only having a cursory examination. My resting heart rate is only 50, but standing even for a few minutes has my HR over 120, of course he would not believe my resting HR was so low because it didn't go lower than 90 when I was in the appointment for obvious reasons, I was v upset by him, angry and close to tears, and he only had me lie semi prone on the couch for a few minutes whilst examining me before doing a 10 minute stand test. Even just sitting in the wheelchair without my legs raised has my HR way up. I have been using a HRM for years so I know what my resting HR is, but he didn't like that I used that either. Is this all my own fault? He has suggested lots of tests but I never want to see him again.

I am drowning in lost years, every day I do so little and it feels that my life is pointless, my husband has gradually taken over all the household chores, so I am not needed for anything now, and mainly just go from bed to the settee and accomplish very little on a daily basis. I always feel ill and fluey and doing anything feels like a gargantuan effort, but obviously when I am in a crash then I feel even more ill in every way and I am just in survival mode. On those extremely rare days when I don't feel quite so hideously ill, I am eager to do things, but I just can't sustain anything and always crash, even if I just sit outside for too long. Even just being too happy usually causes a crash. My crashes often hit full on 2 or 3 days later so I think I have gotten away with things, and then boom!

Dihydrocodeine can help me push through the symptoms a little, but obviously its only masking the symptoms and it mainly only just takes the edge off the pain and the fluey feelings. Losing both my parents in the last few years hasn't helped, my Dad to Covid last year was traumatic. Should I be trying harder? Why can't I push through anymore ever? I just have no push or fight left in me. We don't spend time with friends or family anymore as it is just too difficult, makes me ill and it is just easier not to try, as no one understands I really can't cope with more than 15 minutes of visits. I want to get some life back but it just feels impossible. I now also have osteoarthritis and osteopenia, again an angry doctor took one look at my wheelchair and ME diagnosis and told me its my own fault at my age (52) because I am so inactive.

How many of you have been ill this long and have deteriorated. The ME Association prognosis says it is unusual to continue to deteriorate, is that true? I just wish there was a definitive diagnostic test so I would know if I am genuinely ill or have I somehow done this to myself like Doctors keep telling me I have? I feel sick at the thought I am responsible for ruining my life and my husbands, I never imagined I would still be ill, never mind more ill, 30 years later! Thanks for reading this, sorry it is so long and also I am not sure if I have put it in the right section.

Having ME that is progressive is common. You are not alone. I’m so sorry, bc this disease is horrible.
26 years here.

 

[Tammy7]

It isnt that unusual to have ME for 30 years, I probably have but mildly at first. I've tried a lot of things too and what helps me is NAC and lots of fruit, which stops me felling suicidal most of the time, vitamin D - preferably in the form of sunshine but I supplement too

Just to clarify. The NAC is what helps you from feeling suicidal? Interesting.

 

[Baz493]

Tatt's comment makes a lot of sense, now that you point it out. N acetyl cysteine reduces homocysteine levels. https://pubmed.ncbi.nlm.nih.gov/26447155/

 

[TJ_Fitz]

Michelle, I'm more of a mild to moderate case, thankfully, but it's been dragging on for a long time for me, too. Since my teens (I'm now late 40s), I felt like I wasn't on par with my peers in energy, stamina, or athletic ability. I limped through college part time. Had a really big flare-up that forced me out of my first job after college (2006). At the time, I worked in an old toxic building, and a water line also broke in the kitchen of the house where I lived, so I had a bad combination of toxic exposures. I'd had other flare-ups before but wasn't sure why they happened. The ones I've had since have almost always been after a known water intrusion or other biotoxin exposure.

I learned about Dr. Ritchie Shoemaker and CIRS in 2019, after 1.5 years of disability from living in an apartment that had been previously flooded, and although we couldn't afford to work through his protocol with a doctor he had trained, I did some labs and a one-time consultation with one of those doctors, who confirmed CIRS. I had mixed success with "mold avoidance", and got well enough to return to work for a time. I'm now working with a Shoemaker doctor, and while it's still early days with little improvement yet, we discovered some contributing factors we didn't know about before that are keeping me sick. We are trying to get our current apartment and our skin flora (yes, bacteria on our skin!) remediated so that I can move beyond step one, "remove from exposure".
Surviving Mold: Resources for Patients

If you've never done environmental testing on your home, that might be a good place to start. My doctor had us do Envirobiomics panel 7, which includes HERTSMI-2 (a mold panel), endotoxin, and actino bacteria. Our apartment was good on the first two but crawling with P. acnes and C. tuberculostericum, two of the inflammatory bugs the actino test checks for. As it turns out, molds aren't the only kinds of troublesome bugs that can cause or maintenance environmental illness. Please get your home tested if you can afford it! If you can't afford it, you may try an extended camping trip (1 to 2 weeks) away from potentially water-damaged environments; this is sometimes referred to as a "mold avoidance sabbatical". I did one in a brand new travel trailer, and it definitely confirmed the suspicion of CIRS. Here is one site that talks about how to do it:

A Mold Avoidance Sabbatical Guide

www.mychemicalfreehouse.net

One other thing: CIRS is a biotoxin illness USUALLY caused by chronic exposure to a water-damaged building, but it can ALSO be caused by biotoxins from spider bites, the Lyme spirochete, exposure to algae-contaminated water (bathing in it OR breathing air near it), or eating algae-contaminated seafood.

 

[Not dead yet!]

he basically said whilst I probably have POTS my inactivity & wheelchair use has caused total cardiac deconditioning,

Welcome I want to welcome you and also help you deconstruct this mind game. So,

• You have POTS, he agrees.

• Inactivity is a result of POTS for most patients.

The symptoms of POTS include but are not limited to light-headedness (occasionally with fainting), difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea. (Johns Hopkins website description of the symptoms of POTS)

• Wheelchair use is normal for people who are afraid of falling and hurting themselves because they are dizzy and unstable, at any age.

• Deconditioning results when you are unable to sustain normal weekly self care such as exercise and putting effort into shopping and cooking healthy foods you prefer.

• Which is a result of POTS, not a result of any fault of your own.

This doctor should be punished by his medical board for blaming patients for getting sick. He's failing to help and upsetting patients instead. No matter how "expert" he seems to be, find another.

You're probably just a cog in the wheel of his theory of POTS that he wants to prove, which means he's not treating you as a patient, but as a commodity that can be valuable or devalued, based on how useful you are to his theory. That's unethical and he really should be reported to the medical board.

But I realize you're tired enough and mounting a legal takedown of this jerk is not your first priority. I'm just pointing out that you could.

I don't know if that helps, but I find it calming to defeat such nonsense logically. I hope I succeeded.

As for what works, I don't know what works for everyone. I've been having success with working on my long standing anemia which I forgot about and started working on again. And now I've added high dose iodine, which stomped the brain fog like a bug. I hope that lasts.

I think it's perfectly valid that if you have high titers for EBV or CMV (two very common viruses), regardless of which titers it is, recent or old, you should have a cyclical access to valtrex. That's my opinion as a patient who has this and it stops the fevers for me. Not a cure but an improvement for some people.

I have arthritis so I also take Celebrex. Together Celebrex and Valtrex happen to be similar to the "Pridgen protocol." Again, not a cure, but a lower misery life for me.

Look around at resources, and news. Check out the same at Phoenix Rising forum for ME/CFS, check into the MEpedia and look at MEaction. You're among friends.