Anyone improve from bed/housebound to high level of functionality?

[Freddd]

I was at level 0 for a year, completely bedridden.
My mother had to feed me baby food because I could not chew, my family washed me and carried me to the toilet I forgot how to speak adn understood little, so my ability to communicate was very limited. I was in something like a strange comatose condition between waking and sleeping for a year.

I gradually got better and finished my degree at uni, I was about a level 8.

I spent the next 26 years with CFS varying between remission, where i was at level 8 or 7, and relapses where I was unable to work and about level 1 or 2 for up to 6 months at a time but never anywhere near as bad as the first time. I had bad brainfog but could always talk and read etc.

I never had any treatment other than taking megadoses of magnesium, zinc and vitamin C. The main thing that made me get better was resting in bad all day, doing nothing and having no pressure to do anything.

I've now had blood tests (2 years ago) that confirm the following infections
Chlamydia pneumonia
mycoplasma pneumonia
Lyme disease
erlichia
babesiosis
epstein barr (high titers, fluctuating)
HHV (high titers, fluctuating over time)
Intestinal candida

The two viruses were acquired several years after the initial onset, I remember very dramatic onset of both of those which caused major relapses. I am very convinced that the other infections were all present from the initial onset.

] Hi Athene,

I found that 16 grams of vit C a day very helpful. I followed Linus Pauling's advice, increase to tolerance over and over again until you stop getting sick. It helped tremendously even with the folate and active b12 deficiencies. Living in Ohio and Maine at the time and spedning lots of time outside and in the woods I have had a lot of tick bites. I did have them too in Utah. Sagebrush country is thick with ticks. We all examined each other after coming inside every day and usually found a couple of ticks. Never did find one that had fed but they may have been gone by that time. We did have to use removal processes though after they had attached. No disease was ever verified in any of us from those but who knows.

 

[Frankie Dene]

I got sick 1992 with a bad virus, not EBV, was bed/house bound for 10 years 1 -2, then slowly improved to 3, Started taking imunovir 2004 and after 18 months was back to 10. back to the gym seemed to be completely normal. Then 2009 had a big relapse ( caused I think from stress) which has sent me back to around 2 have been improving and then relpasing since then. Housebound now and spend most of the time on the bed. Have been 3 months on LDN and feel stronger, fewer symptoms, but who knows if these help you or if you would get better anyway. But I can tell you how wonderful it was to be normal after such a long time and how devestating it is to be sick again! also how never to give up hope and keep trying new things. The natural thing that helps me the most is rest and meditation, I take vitb12, cimetidin, imunovir, LDN, amytriptyline (for sleep) and suppliments, zinc, folic acid, CoEQ10, magnesium and potassium and previously have taken denatured whey - also helped with sleep. Also try to get vitD outside or by pill.

 

[kurt]

Fascinating thread, I went from the initial 10 to about 3 after the original 'flu-like illness' that triggered my CFS. Lots of heat, mild exercise, antidepressants and sleeping pills got me back on my feet, back to 7. Then went on antibiotics which got me to a 9. All was well and I went back to work full-time for a few years. But during the stress of a family road-trip, which included swimming in a lake, something crazy happened to my digestive system (in retrospect, probably picked up a parasite from that lake). I became carbohydrate intolerant, got food allergies, and went back to a 3, then over the course of a few years down to a 1, sometimes almost 0. This lasted for seven years, although a few times I went up to maybe a 2 for awhile. Eventually I went through a trial-and-error process, trying out pretty much every self-treatment I could afford. Right now, I am stable at about a 5 most days, some days 6, some days a 4. But not enough energy to return to work yet.

The most important self-treatments for me have been mold avoidance (even relocated to a dry climate for that one), adrenal and general CFS nutritional support, a multi-B12 protocol (mB12,hB12,aB12,mFolate,magnesium chloride, ester-c,B-Right multi, B6, etc), a rice-based rehydration therapy (designed to build blood volume), and most recently Chinese berries that seem to help immune and general energy. These self-treatments make a lot of difference, several points on the scale, and if I stop them, I go back to a 1-2.

I do know a CFS patient who went from a 1 to a 10, she now studies a high-intensity marshal-art. Her treatments were similar to mine, but she also had IV infusions of hydrogen peroxide, something I have not done. Also, she had B12 injections rather than the sublinguals I use. Her greatest benefit came from the Chinese berries. Everyone may be different but I find some of the common points in the effective therapies to be fascinating.

 

[Dreambirdie]

Fascinating thread, I went from the initial 10 to about 3 after the original 'flu-like illness' that triggered my CFS. Lots of heat, mild exercise, antidepressants and sleeping pills got me back on my feet, back to 7. Then went on antibiotics which got me to a 9. All was well and I went back to work full-time for a few years. But during the stress of a family road-trip, which included swimming in a lake, something crazy happened to my digestive system (in retrospect, probably picked up a parasite from that lake). I became carbohydrate intolerant, got food allergies, and went back to a 3, then over the course of a few years down to a 1, sometimes almost 0. This lasted for seven years, although a few times I went up to maybe a 2 for awhile. Eventually I went through a trial-and-error process, trying out pretty much every self-treatment I could afford. Right now, I am stable at about a 5 most days, some days 6, some days a 4. But not enough energy to return to work yet.

Hey Kurt, now that's a roller coaster ride I am very familiar with. MAny ups and downs for me too, over the past 3 decades.

The most important self-treatments for me have been mold avoidance (even relocated to a dry climate for that one), adrenal and general CFS nutritional support, a multi-B12 protocol (mB12,hB12,aB12,mFolate,magnesium chloride, ester-c,B-Right multi, B6, etc), a rice-based rehydration therapy (designed to build blood volume), and most recently Chinese berries that seem to help immune and general energy. These self-treatments make a lot of difference, several points on the scale, and if I stop them, I go back to a 1-2.

QUESTIONS FOR YOU:

What adrenal support do you use?

What is a rice-based rehydration therapy?

ANd by Chinese berries, do you mean goji berries, lychee berries... like the ones below?

 

[Ocean]

Kurt, what are the chinese berries? Where do you get them? Thanks.

Fascinating thread, I went from the initial 10 to about 3 after the original 'flu-like illness' that triggered my CFS. Lots of heat, mild exercise, antidepressants and sleeping pills got me back on my feet, back to 7. Then went on antibiotics which got me to a 9. All was well and I went back to work full-time for a few years. But during the stress of a family road-trip, which included swimming in a lake, something crazy happened to my digestive system (in retrospect, probably picked up a parasite from that lake). I became carbohydrate intolerant, got food allergies, and went back to a 3, then over the course of a few years down to a 1, sometimes almost 0. This lasted for seven years, although a few times I went up to maybe a 2 for awhile. Eventually I went through a trial-and-error process, trying out pretty much every self-treatment I could afford. Right now, I am stable at about a 5 most days, some days 6, some days a 4. But not enough energy to return to work yet.

The most important self-treatments for me have been mold avoidance (even relocated to a dry climate for that one), adrenal and general CFS nutritional support, a multi-B12 protocol (mB12,hB12,aB12,mFolate,magnesium chloride, ester-c,B-Right multi, B6, etc), a rice-based rehydration therapy (designed to build blood volume), and most recently Chinese berries that seem to help immune and general energy. These self-treatments make a lot of difference, several points on the scale, and if I stop them, I go back to a 1-2.

I do know a CFS patient who went from a 1 to a 10, she now studies a high-intensity marshal-art. Her treatments were similar to mine, but she also had IV infusions of hydrogen peroxide, something I have not done. Also, she had B12 injections rather than the sublinguals I use. Her greatest benefit came from the Chinese berries. Everyone may be different but I find some of the common points in the effective therapies to be fascinating.

 

[kurt]

Hey Kurt, now that's a roller coaster ride I am very familiar with. MAny ups and downs for me too, over the past 3 decades.

QUESTIONS FOR YOU:

What adrenal support do you use?

What is a rice-based rehydration therapy?

ANd by Chinese berries, do you mean goji berries, lychee berries... like the ones below?

Love that picture, yes, those are the main berries, the ones that helped the woman I mentioned go from a 1 to a 10 on the CFS scale. I am trying different goji products right now, powders, berries, juices. They look just like that photo, goji berries (aka wolfberries, although some claim there are a few differences, I believe they are about the same). The research into the active ingredients in goji suggests they boost macrophage activity (immune), support ATP recycling, and other things that are interesting for CFS. They are doing something, but my experience is that you have to be careful and work up slowly, they can really ramp up immune function fast and of course that means more symptoms for awhile.

For adrenal support I use ester-C, lots of minerals (RealSalt and Potassium Chloride in particular), sometimes DGL (licorice).

The World Health Organization found that rice-based rehydration is the best type of rehydration for Cholera, which is an enteric infection. So I have experimented with that and in my experience this is the best rehydration approach I have found. Basically you boil rice and salt in a LOT of water, then drink the rice water, in small doses. Very similar to rice milk, but you do not eat the whole rice, just the supernatant from the boiling. I have a paper I wrote last summer that I am glad to send to anyone, but not ready to put this online yet. Just message me if you would like the details.

 

[kurt]

Kurt, what are the chinese berries? Where do you get them? Thanks.

Goji berries or wolfberries are now easy to find online or in health food stories. I am still trying various brands, have not settled on the 'best' preparation yet. The berries are great for snacking and a small energy boost.

 

[Ocean]

I've had symptoms for about 10 years with relapses and very long periods of remissions. A few years ago I got a lot worse and sick much more consistently. Somehow taking corticosteroids for a while brought me largely out of that relapse. I still had symptoms but was much more functional and felt much better overall. Then about about a year ago I crashed from exertion (sadly, I was not diagnosed and didn't know to avoid overexertion) and have been at very low functioning since.

I wonder since I have a history of remissions if there is any hope for me to have another one. This time just feels so much more permanent or long-term and it did from the start of my crash last year. Because of the side effects I haven't tried steroids again to see if they might have the same effect as last time. I wonder if having had symptoms for so long and getting to such a low point now and staying that way for more than a year means I will be staying at this point indefinitely or if there's hope for improvement. I'm holding on to hope but also staying realistic.

It's good to hear that others have had improvements and remissions. I wonder how many have had them so long into their illness, since I know that they say they longer you are sick the less chance you have of improving. I appreciate hearing all the experiences on this thread and will have to look into some of the more closely.

 

[Athene]

I tested positive for almost those exact same viruses. I had periods where I had thoughts of cutting myself, suicidal thoughts, passing out etc etc. My initail onset was a tick bite, but I never tested positive for lyme.

Hi Charles,

I just found out yesterday that I also have bartonella. This is also transmitted by tick bites and there are lots of ticks which have bartonella but not Lyme, particularly in certain areas.

This causes CFS symptoms, a lot like Lyme disease but the neurologial effects are worse. The doc told me yesterday he thinks the total brain breakdown I had was bartonella, as Lyme is not as severe as that. He also said it is extremely common with bartonella to get very severe depression, become suicidal or paranoid, and some people even get schizophernia like symptoms.

Do you often feel very cold, even when other people are not cold at all? And do you have tiny red spots, that look like tiny blood blisters, on your torso or other parts of your body? Or marks that look like reddish stretch marks/scratches? These are also symptoms that some people with Bartonella can have. (I have never had these marks, not everyone gets them).

So it could be worth getting tested for that - I've been taking antibiotics for it for the last year and made great improvements.


Freddd,
Wow, 16 grammes is a lot!
I am taking 9 grammes a day. Richvank said when you take such high doses of C, it recycles glutathione for you so you can compensate for a glutathione deficiency. But if you don't go right up to bowel tolerance, then it is not good for you, and better to just stick with a low dose.

 

[Sushi]

Hi Ocean,

I hesitated to reply to this thread just because it is all so complicated, I have done so many therapies and now that I am better I am doing other things so have less "forum-time."

Still, I want to stand up and be counted as having improved a lot from about level 2 to a level 6.

I have generally done slow "safe" therapies without a lot of risk. I have targeted a lot of the things that others have--methylation, toxins, viruses, bacterial infections, candida, gut infections, OI, etc.

Right now I am taking GcMAF, Nexavir, LDN, high dose hydrox B12 injections, prescription pancreatic enzymes, VSL-3 (probiotic) and other things as needed.

I know, there is no one treatment that works for all, but some of us have found combos of therapies that have helped considerably.

Till they understand more about causes, we will probably all need to keep experimenting...but with good medical support--which is hard to find.

Best wishes,
Sushi

 

[SOC]

Ocean,
I don't know if you would consider my daughter ill enough by the standard of your question -- she was still trying to stay in college, but probably should have been housebound. She would not have made it through another semester, though, even with the massive amount of support we were giving her. She was certainly very ill.

She's now in full remission -- no symptoms and no exercise limitations (fatigue, PENE) after about 20 months of Valcyte and 6 months of Valtrex (and continuing in order to maintain herpesviruses in latency). She also takes some immune support supplements.

She and I had the same very sudden onset flu-like illness in Aug 2004, but she mostly recovered with occasional PENE (maybe twice a year) until she had pre-college vaccinations in Feb 2009. That put her into a relapse from which she didn't recover. She continued downhill until she got Valcyte in Jan 2010. She slowly improved over the next 20 months or so (Valtrex was added at about 18 months and continues to the present). The past 3-4 months she has made quite rapid progress and has been in full remission since mid December. Since then she traveled to Europe where she walked A LOT, climbed towers, ate new foods, stayed up late and didn't get enough sleep, etc, etc and still continued to improve. It looks like a solid remission so far.

 

[hensue]

Wonderful hope she continues to do well!

 

[anniekim]

I'd also be interested if anyone improved significantly through just careful pacing and time, doing no treatments etc....

 

[SOC]

I'd also be interested if anyone improved significantly through just careful pacing and time, doing no treatments etc....

I slowed my decline with careful pacing, but sure didn't improve.

 

[Ocean]

Thanks so much for sharing that SOC. I'm so glad to hear she's doing so much better. So do you see an infectious disease dr. for the Valcyte? Are there any tests done to determine if that is a suitable treatment for someone or do they just give it and try it out to see if it will help? Have there been any adverse side effects? Is it expected that she will be able to go off the medicine eventually?
Thank you!

Ocean,
I don't know if you would consider my daughter ill enough by the standard of your question -- she was still trying to stay in college, but probably should have been housebound. She would not have made it through another semester, though, even with the massive amount of support we were giving her. She was certainly very ill.

She's now in full remission -- no symptoms and no exercise limitations (fatigue, PENE) after about 20 months of Valcyte and 6 months of Valtrex (and continuing in order to maintain herpesviruses in latency). She also takes some immune support supplements.

She and I had the same very sudden onset flu-like illness in Aug 2004, but she mostly recovered with occasional PENE (maybe twice a year) until she had pre-college vaccinations in Feb 2009. That put her into a relapse from which she didn't recover. She continued downhill until she got Valcyte in Jan 2010. She slowly improved over the next 20 months or so (Valtrex was added at about 18 months and continues to the present). The past 3-4 months she has made quite rapid progress and has been in full remission since mid December. Since then she traveled to Europe where she walked A LOT, climbed towers, ate new foods, stayed up late and didn't get enough sleep, etc, etc and still continued to improve. It looks like a solid remission so far.

 

[Ocean]

I'd also be interested if anyone improved significantly through just careful pacing and time, doing no treatments etc....

Me too Anniekim, and especially if anyone improved that way after being sick off and on for many years. Since right now that's basically what I'm doing, no real treatment, at least not yet.

 

[Ocean]

Sushi, Thanks a lot for the info. Was there one doctor that helped you with all of that? Or did you just self experiment, or see different doctors? Were there certain test results that led to you choosing these particular treatments? It's good to hear you've improved so much.

Hi Ocean,

I hesitated to reply to this thread just because it is all so complicated, I have done so many therapies and now that I am better I am doing other things so have less "forum-time."

Still, I want to stand up and be counted as having improved a lot from about level 2 to a level 6.

I have generally done slow "safe" therapies without a lot of risk. I have targeted a lot of the things that others have--methylation, toxins, viruses, bacterial infections, candida, gut infections, OI, etc.

Right now I am taking GcMAF, Nexavir, LDN, high dose hydrox B12 injections, prescription pancreatic enzymes, VSL-3 (probiotic) and other things as needed.

I know, there is no one treatment that works for all, but some of us have found combos of therapies that have helped considerably.

Till they understand more about causes, we will probably all need to keep experimenting...but with good medical support--which is hard to find.

Best wishes,
Sushi

 

[Googsta]

Me too Anniekim, and especially if anyone improved that way after being sick off and on for many years. Since right now that's basically what I'm doing, no real treatment, at least not yet.

Hello, I was diagnosed in 2001 at 24 yrs of age. Apart from two vitamin B injections I used no other treatments or meds other than over the counter pain releif. My liver was ailing so badly my doctor wanted me to avoid everything, even liver tonics, vitamins etc.
I was completely bedridden for 7 months, hospitilized for dehydration (I lived alone) & lost over 20kgs as I wouldn't eat for 6 days at a time.
I suddenly & very slowly began doing chores, walking very short distances, until I built up to 30 minutes everyday. This lasted for two months before relapsing. I went back to full-time work & it was just too much.

This relapse lasted 4 months, I had no treatments whatsoever other than complete rest (bedridden 24/7). Lost more weight, dehydrated again. Suddenly began to improve again & built up the walking & nutrition again. Walking 45 minutes 7 days, after a month I went to the gym 4 days a week including weights, pilates & swimming laps on alternate days.
I was bursting with good health & everyone icluding myself thought I had fully recovered.
I Tried several part-time jobs but were either too fatiguing, painful or chemicals etc then I found a job as a sub-contractor assembing computer cables at home. I was able to do evangelising work for 20 hours per week as well as this work for 11 months.

I have had worsening health since then & several more relapses where I am bedridden for around 4 months at a time & requiring a wheelchair for appointments. During this period of time I have tried CBT, anti-depressants with no effect on ME, physio, exercise, ultrasound therapy, vitamins, anti-biotics for infections.

I keen now to try different treatments as I don't recover as well as I used to after a relapse, but I am hesitant too as I have always recovered from relapses, I don't want to make things worse. Between relapses I function at probably 40% of my pre ME activity level.
I cannot work, maintaining a household is as much as I can manage.

I have worsened in the last two years neurologically with seizures etc. MRI's show lesions, joint problems etc.

I am at a point now where I want some more answers & treatment options.

 

[Freddd]

Hello, I was diagnosed in 2001 at 24 yrs of age. Apart from two vitamin B injections I used no other treatments or meds other than over the counter pain releif. My liver was ailing so badly my doctor wanted me to avoid everything, even liver tonics, vitamins etc.
I was completely bedridden for 7 months, hospitilized for dehydration (I lived alone) & lost over 20kgs as I wouldn't eat for 6 days at a time.
I suddenly & very slowly began doing chores, walking very short distances, until I built up to 30 minutes everyday. This lasted for two months before relapsing. I went back to full-time work & it was just too much.

This relapse lasted 4 months, I had no treatments whatsoever other than complete rest (bedridden 24/7). Lost more weight, dehydrated again. Suddenly began to improve again & built up the walking & nutrition again. Walking 45 minutes 7 days, after a month I went to the gym 4 days a week including weights, pilates & swimming laps on alternate days.
I was bursting with good health & everyone icluding myself thought I had fully recovered.
I Tried several part-time jobs but were either too fatiguing, painful or chemicals etc then I found a job as a sub-contractor assembing computer cables at home. I was able to do evangelising work for 20 hours per week as well as this work for 11 months.

I have had worsening health since then & several more relapses where I am bedridden for around 4 months at a time & requiring a wheelchair for appointments. During this period of time I have tried CBT, anti-depressants with no effect on ME, physio, exercise, ultrasound therapy, vitamins, anti-biotics for infections.

I keen now to try different treatments as I don't recover as well as I used to after a relapse, but I am hesitant too as I have always recovered from relapses, I don't want to make things worse. Between relapses I function at probably 40% of my pre ME activity level.
I cannot work, maintaining a household is as much as I can manage.

I have worsened in the last two years neurologically with seizures etc. MRI's show lesions, joint problems etc.

I am at a point now where I want some more answers & treatment options.

Hi Googsta,

I am at a point now where I want some more answers & treatment options.


I can offer you some possible answers and possible treatment options. I have fully recovered from FMS and CFS and ME. However, the damage, the demyelination, the neurological damage is in a lot of remission. I am fully functional but just barely hold the subacute combined degeneration more or less at bay. There is a lot that can be reversed but not all the damage. I have full energy. I can increase my aerobic capacity limited only by my will to do so and do what is needed. I could probably ski again but won't try until I have medicare just in case. I would have to stick to intermediate and advanced trails but not bumps, that didn't strain my knees too much as they are not what they used to be, old injuries and such. It's not perfect. People have all sorts of comorbidities. However, in the almost 9 years since I started with mb12 there hasn't been a single year that has gone by in which understanding hasn't advanced leading to more improvment or fewer reasons for crashing. If I had known everything 9 years ago that I have learned, often the hard way, since then, I would be more healed than I am in the hard damage area. I have never fully recovered from the exrtra damage done by glutathione for instance. After the basics are in place there is a lot of customizing that needs to be done.

You are a lot younger and don't have anywhere near the level of damage. I would suggest you have a reasoanbly good chance of recovery for everything except the neurological damage and maybe 75% remission for that if you don't spend 10 years spinning your wheels. You sound like where I was 15 years ago. Best of luck. If you arfe interested in talking about it, I'll be around.

 

[Ocean]

Hi Googsta,

I am at a point now where I want some more answers & treatment options.


I can offer you some possible answers and possible treatment options. I have fully recovered from FMS and CFS and ME. However, the damage, the demyelination, the neurological damage is in a lot of remission. I am fully functional but just barely hold the subacute combined degeneration more or less at bay. There is a lot that can be reversed but not all the damage. I have full energy. I can increase my aerobic capacity limited only by my will to do so and do what is needed. I could probably ski again but won't try until I have medicare just in case. I would have to stick to intermediate and advanced trails but not bumps, that didn't strain my knees too much as they are not what they used to be, old injuries and such. It's not perfect. People have all sorts of comorbidities. However, in the almost 9 years since I started with mb12 there hasn't been a single year that has gone by in which understanding hasn't advanced leading to more improvment or fewer reasons for crashing. If I had known everything 9 years ago that I have learned, often the hard way, since then, I would be more healed than I am in the hard damage area. I have never fully recovered from the exrtra damage done by glutathione for instance. After the basics are in place there is a lot of customizing that needs to be done.

You are a lot younger and don't have anywhere near the level of damage. I would suggest you have a reasoanbly good chance of recovery for everything except the neurological damage and maybe 75% remission for that if you don't spend 10 years spinning your wheels. You sound like where I was 15 years ago. Best of luck. If you arfe interested in talking about it, I'll be around.

Fredd, Where can I find a link to your protocol? Also what's the best way to discuss the protocol with my doctor if I wanted to consider it. I am unable to understand all the scientific terms that are used in discussing the methylation protocols (if that is what your protocol is) and I have no idea what methylation is despite trying to understand, but I would not want to try it without going over it with my doctor. What would I say to him? And are there tests that should be done first?