Drug Would You Take an Experimental Drug For ME/CFS and/or FM?

Would you take a promising but highly experimental drug for ME/CFS and/or FM?

  • I'd take it in a snap

    Votes: 31 30.4%
  • I'd learn towards taking it

    Votes: 35 34.3%
  • I'd see if I could let others try it first. If it looked good I'd be an early user.

    Votes: 24 23.5%
  • I'd wait for substantial clinical evidence before I tried it.

    Votes: 12 11.8%
  • I'd want a clinical trial done first

    Votes: 10 9.8%

  • Total voters
    102

michele

Member
I've been sick with CFS/ME and in that time tried various therapies that made me permanently worse. Some things that I've tried only made me temporarily worse, and that's OK. Just enough wasn't known about the drugs, one of which (DMPS) had been around a long time. It made me worse all the way aroud, permanently. It wasn't a CFIDS drug, but since I had a heavy mercury exposure it was thought mercury was the cause of my illness.
Soo, I'd rather wait and see how a lot of others do next time.
 

tatt

Well-Known Member
I'd lean towards taking it but I think a lot depends on what stage you are at. When I was worried about being permanenetly bedrideen and was sleeping most of the day I had nothing to lose, I'd have taken anything. When I had severe pain I took carbamazepine despite the side effects, and they did lessen with time. Once you recover a bit you have something to lose so its more of a baance against just how bad the side effects are and - very important this - would they stop if you stopped the drug? I'd risk pretty bad side effects if I could be sure they wouldn't last.
 

Deborah

New Member
I was part of a clinical trial for a drug to treat IBS. I was desperate for some help so I figured what the heck. After about a week of severe constipation I told the nurse I want out of the study, she replied "I guess you didn't get the placebo"! A couple years later I found out the drug was approved but was now being pulled off the market because some patients had died of an impacted colon. I'm not sure how this was approved in the first place but I was glad I stopped when I did. In my mind its scary enough to take a drug that's new to market, never mind one that hasn't been approved yet. So that would be a no thanks.
 

TigerLilea

Well-Known Member
But I'm 100% sure if Rituximab was free now, a huge amount of patients would be taking it like water.
Rituximab is supposed to be very risky about it's side effects but funnily enough I've never heard or read any history of people with ME getting worse with the drug.
I would rather live with ME/CFS than take a chemotherapy drug as a possible cure. For me the risks are too high and not worth it.
 

Folk

Well-Known Member
I would rather live with ME/CFS than take a chemotherapy drug as a possible cure. For me the risks are too high and not worth it.
It's "chemotherapy" drug as much as aspirin...
Or like anyother drug or any "chemical"

The term "chemotherapy" just mean Cancer treatment that wrecks your whole body in the popular culture.

You meant something like cytotoxic therapy which I don't even understand but it's what wrecks the body so much in the cancer treatment and Rituximab isn't one of those...
 

Issie

Well-Known Member
What if you could do something free or at least no more than what is already spent in a week. You have complete control over it. Doesn't require a doctor or testing or even an RX. Is guaranteed to give positive results - but may not be 100% - but will for sure FIX some of the problems - not mask them. Would you do it? Only problem is - only YOU can do it and only YOU have control over the results. Would you do it?
WHAT????
Change of lifestyle with a lowfat, whole food, Vegan diet. I think it is the key to genetic mutations and autoimmune function. It's the one thing that generations of our family has passed (the habits) on - magnifying some possibly epigenetic flaws or mutations in the family. Causing some long term deficiencies that you pass on to your kids that they pass on.......till we get to here, on a forum, trying to find solutions to our painful, scientifically little understood dysfunctioning bodies. Are there any up to the challenge?????? What have you got to lose? Maybe a good bit of the illness. Maybe not all of it - but enough to be able to Say and feel like you have a life. It's one of the hardest commitments I've made. But is paying off so much more than what ever I, at first, felt was a sacrifice - but now is just becoming a habit. I didn't start out with ethics as a factor. But only health as the goal. Now both play a part in my decision. My husband was so Leary of it to start with. Now anyone with health issues he tells them to talk to me about my diet. Or he tells them to become Vegan. He is more Vegan now than not. But isn't as strict as I'm TRYING to be. For me it was life or death. Now I have my life back.

(Some sites that I've learned from and keep me motivated are - Dr McDougall, Dr Greger, Forks over Knives, Engine 2, Dr Campbell with his book "The China Study". There are many more. Sorry if I didn't list someone. I know I'm forgetting some). They all have web sites and motivational info they send out. There are many vegan cooking sites. One I'm really liking is Vegan Richa. She gives alternatives to dairy, eggs, soy and gluten.

No pill can fix it - it only mask or disrupts the symptoms. Changing HOW our body functions gets to the core issue. (After saying that, I'm not against medicine if it improves your quality of life with minimal chance of worsening health, I'm all for better quality of life. I'm on medicines myself). Life is not about quantity it's all about quality. What we can do and how we can function until we get to our last breath.

Issie
 
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TigerLilea

Well-Known Member
It's "chemotherapy" drug as much as aspirin...
Or like anyother drug or any "chemical"

The term "chemotherapy" just mean Cancer treatment that wrecks your whole body in the popular culture.

You meant something like cytotoxic therapy which I don't even understand but it's what wrecks the body so much in the cancer treatment and Rituximab isn't one of those...
Rituximab is a cancer drug (chemotherapy) used for non-Hodgkin's lymphoma and chronic lymphocytic leukemia. It certainly isn't a drug like aspirin.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I was part of a clinical trial for a drug to treat IBS. I was desperate for some help so I figured what the heck. After about a week of severe constipation I told the nurse I want out of the study, she replied "I guess you didn't get the placebo"! A couple years later I found out the drug was approved but was now being pulled off the market because some patients had died of an impacted colon. I'm not sure how this was approved in the first place but I was glad I stopped when I did. In my mind its scary enough to take a drug that's new to market, never mind one that hasn't been approved yet. So that would be a no thanks.
Good example of the risks involved!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
What if you could do something free or at least no more than what is already spent in a week. You have complete control over it. Doesn't require a doctor or testing or even an RX. Is guaranteed to give positive results - but may not be 100% - but will for sure FIX some of the problems - not mask them. Would you do it? Only problem is - only YOU can do it and only YOU have control over the results. Would you do it?
WHAT????
Change of lifestyle with a lowfat, whole food, Vegan diet. I think it is the key to genetic mutations and autoimmune function. It's the one thing that generations of our family has passed (the habits) on - magnifying some possibly epigenetic flaws or mutations in the family. Causing some long term deficiencies that you pass on to your kids that they pass on.......till we get to here, on a forum, trying to find solutions to our painful, scientifically little understood dysfunctioning bodies. Are there any up to the challenge?????? What have you got to lose? Maybe a good bit of the illness. Maybe not all of it - but enough to be able to Say and feel like you have a life. It's one of the hardest commitments I've made. But is paying off so much more than what ever I, at first, felt was a sacrifice - but now is just becoming a habit. I didn't start out with ethics as a factor. But only health as the goal. Now both play a part in my decision. My husband was so Leary of it to start with. Now anyone with health issues he tells them to talk to me about my diet. Or he tells them to become Vegan. He is more Vegan now than not. But isn't as strict as I'm TRYING to be. For me it was life or death. Now I have my life back.

(Some sites that I've learned from and keep me motivated are - Dr McDougall, Dr Greger, Forks over Knives, Engine 2, Dr Campbell with his book "The China Study". There are many more. Sorry if I didn't list someone. I know I'm forgetting some). They all have web sites and motivational info they send out. There are many vegan cooking sites. One I'm really liking is Vegan Richa. She gives alternatives to dairy, eggs, soy and gluten.

No pill can fix it - it only mask or disrupts the symptoms. Changing HOW our body functions gets to the core issue. (After saying that, I'm not against medicine if it improves your quality of life with minimal chance of worsening health, I'm all for better quality of life. I'm on medicines myself). Life is not about quantity it's all about quality. What we can do and how we can function until we get to our last breath.

Issie
I just can't imagine not eating meat....I think I would kind of blow away. I go vegan for a little bit and do feel better but then get spacey....
 

Issie

Well-Known Member
I just can't imagine not eating meat....I think I would kind of blow away. I go vegan for a little bit and do feel better but then get spacey....
You have to make sure you get enough plant protein or you will feel bad. We found a great vegan source protein powder that we make smoothies with. Put lots of berries, papaya and banana. Fills us up and it last. Since we don't limit carbs we have energy. We both are gluten sensitive so we really don't do breads. But we like gluten free oatmeal and buckwheat. We do milk alternatives. I'm learning to enjoy things I used to wouldn't eat. My taste for things is changing. We get more creative with foods now. I used to HATE to cook. It just wasn't my thing. But now, I'm enjoying it. Still not very good at it - but I'm trying. Hey ----I'm jazzed over this change and I know it has made huge changes for me in a positive way. At first I missed meat and butter. But now it sort of disgust me. I didn't start out with being vegan for ethics - but I'm starting to feel that way more with time. Plus, all the research I've done on it ......... If people only knew what they were eating and the expense that goes into meat...... Well, I think, we'd have more vegans. Not to mention how adversly it affects the immune system.

Issie
 

Folk

Well-Known Member
I just can't imagine not eating meat....I think I would kind of blow away. I go vegan for a little bit and do feel better but then get spacey....
When I was drinking green smoothies I almost got a remission... Got 50% better in less than a week, and kept getting better. Then went vegan and got the worst relapse ever, went downhill and got way way way worst what I ever was. I can't assure you it was the reason but I think it's risky....
Rituximab is a cancer drug (chemotherapy) used for non-Hodgkin's lymphoma and chronic lymphocytic leukemia. It certainly isn't a drug like aspirin.
Ok, you don't want to understand it hehe
 

Issie

Well-Known Member
When I was drinking green smoothies I almost got a remission... Got 50% better in less than a week, and kept getting better. Then went vegan and got the worst relapse ever, went downhill and got way way way worst what I ever was. I can't assure you it was the reason but I think it's risky....

Ok, you don't want to understand it hehe
Could you have been detoxing or herxing. My doc warned me that I had to get worse to get better. It threw me for a bit. But I leveled off. Your body isn't used to so much fiber and that takes an adjustment. But if there are detoxes involved - well that takes time, and sticking it out. End results are what count. For me, it was worth sticking it out through the adjustment. Hey, what I had been doing wasn't getting me well. It was going to have to take a change to get a change. If nothing changes, everything stays the same.

Issie
 

Folk

Well-Known Member
Could you have been detoxing or herxing. My doc warned me that I had to get worse to get better. It threw me for a bit. But I leveled off. Your body isn't used to so much fiber and that takes an adjustment. But if there are detoxes involved - well that takes time, and sticking it out. End results are what count. For me, it was worth sticking it out through the adjustment. Hey, what I had been doing wasn't getting me well. It was going to have to take a change to get a change. If nothing changes, everything stays the same.

Issie

I considered that Issie...
But no it certainly wasn't detox. I started having the worst stomach pains ever after eating anything and than it just went straight downhill... I had basically only pain before that (alos insomnia, mild GI problems), and after I got a whole new list of symptoms: brainfog, much much much more pain, weakness, fatigue, photo sensitivity, not to mension the depression like going through hell. It didn't got better... I kept being vegan but it just got worse... I'm now for a while getting slowly better but I begun eating meat and eggs again, stopped going to the university and stopped working for total fully pacing, started taking lyrica (before, with the allodynina I simply couldn't be in the world, everything that touched me hurt so bad... I felt like I needed to be on a white endless space floating.), but I'm still a loot worse than I was before trying to go vegan. :\

I think somehow I developed a fruit malabsorption, cause now I can't get close to fruits. It messed something in my gut that triggered it all... Before I use to have GI problems and all but nothing I ate was such a big problem (I used to do the most crazy experiences in the kitchen hehe) and I used to drink a lot... it's pretty strange.

There was also the fact that I stopped taking Cymbalta at the same time (I was only taking 30mg, for 3-4 months and it was of no help at all), so I wondered if it could be some kind permanent/delayed damage of the Cymbalta or the Cymbalta withdrawl, but all doctors assure me that this was impossible. (I mean, I had a lot of withdrawl sympyoms but they went away before going downhill...)
 

Issie

Well-Known Member
I considered that Issie...
But no it certainly wasn't detox. I started having the worst stomach pains ever after eating anything and than it just went straight downhill... I had basically only pain before that (alos insomnia, mild GI problems), and after I got a whole new list of symptoms: brainfog, much much much more pain, weakness, fatigue, photo sensitivity, not to mension the depression like going through hell. It didn't got better... I kept being vegan but it just got worse... I'm now for a while getting slowly better but I begun eating meat and eggs again, stopped going to the university and stopped working for total fully pacing, started taking lyrica (before, with the allodynina I simply couldn't be in the world, everything that touched me hurt so bad... I felt like I needed to be on a white endless space floating.), but I'm still a loot worse than I was before trying to go vegan. :\

I think somehow I developed a fruit malabsorption, cause now I can't get close to fruits. It messed something in my gut that triggered it all... Before I use to have GI problems and all but nothing I ate was such a big problem (I used to do the most crazy experiences in the kitchen hehe) and I used to drink a lot... it's pretty strange.

There was also the fact that I stopped taking Cymbalta at the same time (I was only taking 30mg, for 3-4 months and it was of no help at all), so I wondered if it could be some kind permanent/delayed damage of the Cymbalta or the Cymbalta withdrawl, but all doctors assure me that this was impossible. (I mean, I had a lot of withdrawl sympyoms but they went away before going downhill...)
You sound like some who have POTS along with gastropherisis. My sis figured out she is fructose intolerant. And I figured out with 23&me that I have issues with sulfur type foods. I had to totally lay off them until I worked on my methylation mutations. Now I can eat the foods, but not take concentrated supplements that are sulfur based. So maybe something like that.

Sorry you had to stop your studies and lay low. Maybe you will find something that will help SOON!!!! We are all looking.

Not sure diet was your cause. Being vegan has to be thought out carefully or you can imbalance some things. Did you supplement B12, iodine and Vit D? Those things my doc says we must do as vegans.

Hang tight. Hope is still alive.

Issie
 

Susan Hall

New Member
I was about to click on leaning towards taking an experimental drug but then I remembered my family and thought that I would need to be more careful. I do have times of only mild symptoms and the rest of the time I can still be there for my family. I would not want to risk losing what I have got unless I had my family's support and the possible benefit outweighed any risk factors. Also if there was a financial cost and commitment of my time this would come into my decision.
 

Folk

Well-Known Member
You sound like some who have POTS along with gastropherisis. My sis figured out she is fructose intolerant. And I figured out with 23&me that I have issues with sulfur type foods. I had to totally lay off them until I worked on my methylation mutations. Now I can eat the foods, but not take concentrated supplements that are sulfur based. So maybe something like that.

Sorry you had to stop your studies and lay low. Maybe you will find something that will help SOON!!!! We are all looking.

Not sure diet was your cause. Being vegan has to be thought out carefully or you can imbalance some things. Did you supplement B12, iodine and Vit D? Those things my doc says we must do as vegans.

Hang tight. Hope is still alive.

Issie
No Issie it was to fast, I even discussed the supplements with my nutritionist. She mentioned omega 3 and b12. Omega 3 I was taking but the b12 was to early, all that happened in less then 3 months being a vegan... :\

I don't know if I have POTS... I have no problem with my heart rate while standing... I seem to have some irregular heartbeats sometimes, but not so related to standing or sitting. Perhaps I feel something if I'm lying down and jump to get up to fast, but that's all, it'll go away even if I stay up.

I just did a fructose breath test and am waiting the results now. I'm going to OMI to have first appt with Dr. Kafuman in the end of july, and while in NY I will request the 23andme and let's see what we can find. Things are supposed to get better from now on.
I had a period with headaches (I'm almost 100% sure it was because I was taking Tramadol) and now I'm so thankful I have almost 0 headache, which was one of the worst symptoms, also had a period while my legs would shake and hurt so much if I stayed up for more than 20 minutes, now I'm ok with gentle walking (not exercise style, just taking a walk in the park) for more than an hour I guess.. It still hurts but the other day I don't feel like I need to amputate my legs to stop the pain :p
 

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