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

[Frankie Dene]

There is a list somewhere on this blog of things people found helped. Rest and pacing was at the top - and appears to be so with any patient survey. I would be very hesitant to do anything that involves exercise, there has been a lot of media attention on the usefulness of graduated exercise etc.which is very confusing. We don't all have the same symptoms, some are able to exercise but generally they are said to have CFS while those who have relapses after exercise as a symptom are said to have ME. For those with ME the treatment perhaps should be different to those with CFS. I could be wrong, but it seemed the Methylation protocol was liked by people but the majority felt it didn't make them much better. There is a lot of discussion on it on this blog which you would find helpful.

 

[SOC]

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!

We see Dr Lerner who is an infectious diseases doctor. You need to have evidence of an active CMV or HHV-6 infection for most infectious disease docs to prescribe Valcyte. The problem is that reactivated HHV-6, at least, is notoriously difficult to diagnose. Apparently the tests are not up to snuff. See http://www.hhv-6foundation.org/patients/hhv-6-testing-for-patients. There are very few ID docs willing to prescribe Valcyte - I know Drs Lerner, Montoya, Kogelnik (sp?), and Enlander have prescribed it, but I don't know what their criteria are.

My daughter was within the first 6 years of illness, and just 1 year into continuous symptoms when she got Valcyte. She had no side effects, except one time her labs showed slight neutropenia which cleared up by the next lab 2 weeks later. I on the other hand, got sick at the same time, but was on a downhill slide for the entire 6 years, so I was sicker (essentially bedbound) when I started Valcyte. I had a rough 10 weeks about 4 months into Valcyte treatment. It looked like an IRIS-type reaction. I am better, moving around in the housebound/mostly housebound range, but far from remission still, so I don't want to give the impression that 20 months of Valcyte is going to get us all into remission. Still, it's done great things for my family, so I'm a big fan of Valcyte.

My daughter has been off Valcyte for 4-5 months. She may have to stay on Valtrex for a long time. The question is whether PWME can keep herpesviruses in latency. It appears many of us cannot, but there's no research. Until we know more, it's safest to stay on Valtrex. That's not particularly risky; people with genital herpes take Valtrex for the rest of their lives to avoid reactivations. So, it may be better to take Valtrex for years than to risk a reactivation of EBV, CMV, HHV-6, HSV, varicella, etc, etc.

 

[SOC]

We don't all have the same symptoms, some are able to exercise but generally they are said to have CFS while those who have relapses after exercise as a symptom are said to have ME. For those with ME the treatment perhaps should be different to those with CFS.

In the US we all have "CFS". ME is not an accepted diagnosis in the US. Sucks for us, but that's the way it is. So it's not legit (for US patients, at least) to say that CFS patients can exercise.

 

[Googsta]

You are quite correct Frankie. The CFS/ME debate continues.
The possibility of the disease having sub groups (like MS) is still on the table.

I used to be able to exercise & recover well after relapses in the early days, this is not so now. I would never tell anyone to exercise, you must feel the physical urge to do so yourself & with extreme care.
I don't beleive in GET for unwell people whatsoever. I am currently bedridden & I have no intention of doing any exercise other than a trip to the bathroom when absolutely necessary.
What works for one will be quite detrimental to another.

Fred, whilst I genuinely appreciate your offer to help, please spare me from the competition of who is worse off
"You are a lot younger and don't have anywhere near the level of damage."
You cannot possibly know my situation or my level of damage.

I do not consider myself to be spinning my wheels, I live my life as fully as possible whether I am relapsed or not.
Please try to choose your words more carefully in future as we all come here for comfort from the outside world.
Peace.

 

[LisaGoddard]

Hi, Just thought I should add my experience. I was housebound but coped with an exhausting trip out perhaps once a week for about 2 years (so number 2 on the scale). As a providential accident I started using lactoferrin (antiviral, antibacterial and immune modulator naturally found in milk, tears, etc). After two weeks, I felt better than I had for years. In fact, I started having flashbacks to being very young as this was the last time my body had felt so well.

Whenever I reduced the dose, however, the fatigue would come back a bit. In the end, I opted for a maintenance dose and managing the rest of my symptoms. Even so, I was able to go back to doing my science and theology PhD full-time and have some social life, and later teaching, for about five years. Then it started to become less and less effective. Now my body can't tolerate it and I am back where I was - housebound and unable to work. I now know that you should pulse immune modulators so that your body doesn't get used to them as they will lose efficacy.
Hope this helps.
Kind regards,
Lisa

 

[Ocean]

I now know that you should pulse immune modulators so that your body doesn't get used to them as they will lose efficacy.
Hope this helps.
Kind regards,
Lisa

Lisa, what do you mean by pulse? Was the lactoferrin something that had to be prescribed to you and if it was, what was the reason that the doctor gave it to you, or under what circumstances would this be prescribed to someone? Thank you.

SOC, Thanks a lot for the info. ID doctor is on my list. I have so many appointments I just haven't been able to go to yet because of how low my functioning has been. I can only get out to the doctors so rarely. I really hope this year I will be able to do this. I'm glad to hear you've improved even if it's not as dramatic as one would like.

 

[Frankie Dene]

After 20 years of trying this and that, one gets rather cynical about new alternative therapies, not mentioned at the conferences. I have decided to go the medical way - as proposed by Dr Klimas and Dr Vallings and use immune modulators - imunovir and LDN - plus sub lingual vit B12 plus various suppliments, and I do serious meditation and visualisations 3 times every day. The theory of trying to get your immune system back to normal through the use of immune modulators seems very sensible as it is now known that the illness has been caused by an infection and therefore the immune system has become over active. By modulating it the theory is that the body will get back to normal. 7 years ago I felt that imunovir had done this for me as I became a 10 for 5 years. I'm working to get back to that and do feel I'm improving all the time,(still only a 2/3) just have to pace and rest and try not to have a relapse. I am getting periods of feeling normal but I know my body is not back to normal so it needs careful monitoring and patience. We are all different and need to keep trying to get better, never give up!

 

[Ember]

In the US we all have "CFS". ME is not an accepted diagnosis in the US. Sucks for us, but that's the way it is.

Are you sure about this SOC? I've heard others claim to have an ME diagnosis and disability status based on that diagnosis in the US.

Hi, Just thought I should add my experience. I was housebound but coped with an exhausting trip out perhaps once a week for about 2 years (so number 2 on the scale). As a providential accident I started using lactoferrin (antiviral, antibacterial and immune modulator naturally found in milk, tears, etc). After two weeks, I felt better than I had for years. In fact, I started having flashbacks to being very young as this was the last time my body had felt so well.

Whenever I reduced the dose, however, the fatigue would come back a bit. In the end, I opted for a maintenance dose and managing the rest of my symptoms.

What a wonderful providential accident! What dose of lactoferrin did you use?

 

[Ocean]

After 20 years of trying this and that, one gets rather cynical about new alternative therapies, not mentioned at the conferences. I have decided to go the medical way - as proposed by Dr Klimas and Dr Vallings and use immune modulators - imunovir and LDN - plus sub lingual vit B12 plus various suppliments, and I do serious meditation and visualisations 3 times every day. The theory of trying to get your immune system back to normal through the use of immune modulators seems very sensible as it is now known that the illness has been caused by an infection and therefore the immune system has become over active. By modulating it the theory is that the body will get back to normal. 7 years ago I felt that imunovir had done this for me as I became a 10 for 5 years. I'm working to get back to that and do feel I'm improving all the time,(still only a 2/3) just have to pace and rest and try not to have a relapse. I am getting periods of feeling normal but I know my body is not back to normal so it needs careful monitoring and patience. We are all different and need to keep trying to get better, never give up!

Frankie what type of doctor do you see for those prescriptions? Thank you.

 

[SOC]

Are you sure about this SOC? I've heard others claim to have an ME diagnosis and disability status based on that diagnosis in the US.

The US uses ICD-9-CM for coding for medical records, insurance, disability, etc, etc. There is not a code in it for ME. That's all you'll get any insurance or disability services clerk to care about. Note that the US is NOT even up-to-date with WHO's ICD-10.

Many US patients will call their illness ME or ME/CFS or CFIDS as more accurate descriptions. Some doctors will even write ME in a patient's medical file, but the medical coding for our illness is 780.71 Chronic Fatigue Syndrome.

Perhaps someone with knowledge of the fine details of coding wants to carry on the discussion -- I can't say the details fascinate me much. I work with practical implication, which is: you have "CFS" or you don't have services.

 

[LordUgh]

Some things that helped me

I was sick for 9.5 years. I was level 0/1 but somehow I managed to keep working (I teach about 25 hours a week at a local community college). It was awful. I tried a bunch of different things and learned to manage my condition. With that I was able to raise my level to 2/3 but I would have long periods where I'd drop to 0/1.

My big breakthrough came when I figured out I was hypothyroid type 2 (HT2). Regular hypothyroidism, which Dr. Mark Starr calls hypothyroidism type 1 (HT1), is where your thyroid produces little or no hormone which can easily be detected by a blood test. I was tested several times and I was always in the "normal" range. HT2 is where your thyroid produces a "normal" amount of hormone but your body needs more. Two tests for helping to diagnose HT2 are a low basal temperature and myxedema. HT2 can not be detected by a blood test.

After taking thyroid for almost a year I am in the 5-8 range depending on how much I push myself. I can push hard one day but the next I'll have to take it easy. I still have to be careful (pick and choose what I do and not push too hard) but I do alright now. Each day I seem to get a little better. I still have bad days but they are nothing like I used to be.

You can read a long post I made for more details (co-factors and things I tired that worked and didn't work e.g. hyperbaric chamber):
http://forums.phoenixrising.me/showthread.php?15405-Some-things-that-have-helped-me

 

[Ocean]

I was sick for 9.5 years. I was level 0/1 but somehow I managed to keep working (I teach about 25 hours a week at a local community college). It was awful. I tried a bunch of different things and learned to manage my condition. With that I was able to raise my level to 2/3 but I would have long periods where I'd drop to 0/1.

My big breakthrough came when I figured out I was hypothyroid type 2 (HT2). Regular hypothyroidism, which Dr. Mark Starr calls hypothyroidism type 1 (HT1), is where your thyroid produces little or no hormone which can easily be detected by a blood test. I was tested several times and I was always in the "normal" range. HT2 is where your thyroid produces a "normal" amount of hormone but your body needs more. Two tests for helping to diagnose HT2 are a low basal temperature and myxedema. HT2 can not be detected by a blood test.

After taking thyroid for almost a year I am in the 5-8 range depending on how much I push myself. I can push hard one day but the next I'll have to take it easy. I still have to be careful (pick and choose what I do and not push too hard) but I do alright now. Each day I seem to get a little better. I still have bad days but they are nothing like I used to be.

You can read a long post I made for more details (co-factors and things I tired that worked and didn't work e.g. hyperbaric chamber):
http://forums.phoenixrising.me/showthread.php?15405-Some-things-that-have-helped-me

Thanks so much for this info. I may ask my endocrinologist about this. Can you tell me what the symptoms were that you had from the thyroid problem?

As far as the activity level I don't think it's possible to be at 0/1 and work out of the home for 25 hours a week. The way it's defined on the scale 1 is bedridden constantly, and 2 is leaving the house just once a week.

 

[Freddd]

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?

Hi Ocean,

Where can I find a link to your protocol?

http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics

This is not so narrowly focused as being about methylation. Methylation, and mitochondria functioning, neurological functiong, neurotranmitters, immune system, and so on. This is about any of several hundred symptoms that can be casued by these various deficiencies in all sorts of combinations. It's about having worked throught all the things that kept so many other things from working. If you are going to have tests it should be before starting. However, while the tests can tell you that you are in very bad trouble already, they can't predict who will be helped by mb12,adb12 and Metafolin.

I started it 2 days after I saw my new internist for the fiirst time. He took lots of blood for some tests but as I'm a self pay, and I was taking cyanocbl and folic acid he said that the tests won't tell him the problem. Two days later I came across the final piece and went to the vitamin store to buy some methylb12. I wasn't going to wait 2 1/2 weeks until I was scheduled to see him again. By the time I walked into that office there was a visual night and day and he could see I had come back to life. Everybody in his office could see the difference and commented on it. Everybody could see it. I told him what all I was taking. With results like he could see with his naked eye he never questioned any of it.

 

[Freddd]

There is a list somewhere on this blog of things people found helped. Rest and pacing was at the top - and appears to be so with any patient survey. I would be very hesitant to do anything that involves exercise, there has been a lot of media attention on the usefulness of graduated exercise etc.which is very confusing. We don't all have the same symptoms, some are able to exercise but generally they are said to have CFS while those who have relapses after exercise as a symptom are said to have ME. For those with ME the treatment perhaps should be different to those with CFS. I could be wrong, but it seemed the Methylation protocol was liked by people but the majority felt it didn't make them much better. There is a lot of discussion on it on this blog which you would find helpful.

Hi Frankie Dene,

There are far more things then differences in exercise. I am mapping a multitude of symptoms to the 5 different deficiencies that in various combinations and specific secondary and teritiary deficiencies make up all these various diseases; body - methylb12, body - Adenosylb12, CSF/CNS - methylb12, CSF/CNS adenosylb12 and methylfolate. Then there are perhaps another half dozen possible secondaries and a few dozen possible teriaries.

 

[LisaGoddard]

Lisa, what do you mean by pulse? Was the lactoferrin something that had to be prescribed to you and if it was, what was the reason that the doctor gave it to you, or under what circumstances would this be prescribed to someone? Thank you.

SOC, Thanks a lot for the info. ID doctor is on my list. I have so many appointments I just haven't been able to go to yet because of how low my functioning has been. I can only get out to the doctors so rarely. I really hope this year I will be able to do this. I'm glad to hear you've improved even if it's not as dramatic as one would like.

Dear Ocean, Sorry that I haven't replied earlier, I'm very intermittent in my posting and internet use. Lactoferrin is a supplement and so can be purchased in health stores. (I used an ethically sourced one from gutdoctor.co.uk- the lactoferrin is taken from a cow's first milk, colostrum, to calves - ethical ones ensure the calf is not denied what it needs. Hope that makes sense as it is not a good day today but really wanted to answer you soon).

 

[Ember]

Lactoferrin is a supplement and so can be purchased in health stores.

Can I ask again what dose worked for you?

 

[LisaGoddard]

Hi Ocean, Forgot to say that the suggestion from gutdoctor was that I should have taken it for 3 weeks and then gone for one week without. I know there is also a protocol for imunovir, another immune modulator, which may also work. Interestingly, I later tried imunovir (pharmaceutical drug) which certainly helped but not nearly as much as the lactoferrin (supplement). Google scholar seems to list a number of medical articles that have used lactoferrin in treatments.

Hi Ember, The maximum dosage of lactoferrin was 3 capsules of 250mg lactoferrin per day, and the maintenance dose was 1 capsule per day. So sorry about my late replies. Will check this thread again tomorrow.

 

[Ember]

Hi Ember, The maximum dosage of lactoferrin was 3 capsules of 250mg lactoferrin per day, and the maintenance dose was 1 capsule per day. So sorry about my late replies. Will check this thread again tomorrow.

Thanks for your reply! I bought some (AOR Classics Series) the other day after reading your post. It recommends 1 to 6 capsules/day (250 mg), and I wondered whether more was better. Perhaps I'll stick with 3 then.

 

[LordUgh]

My symptoms

Thanks so much for this info. I may ask my endocrinologist about this. Can you tell me what the symptoms were that you had from the thyroid problem?

As far as the activity level I don't think it's possible to be at 0/1 and work out of the home for 25 hours a week. The way it's defined on the scale 1 is bedridden constantly, and 2 is leaving the house just once a week.

My Symptoms:
Here are some of the symptoms I had in no particular order (or maybe what bothered me most):
1) Non-restorative sleep. I would sleep and sleep and sleep yet never feel rested. This was not only a physical tiredness but a mental and emotional tiredness.
2) Fatigue and post-exertion malaise. I was beyond exhausted. Everything was an effort. I did not bounce back after any kind of physical activity. I couldn't even mow my own lawn. I did only what I had to do like pay bills and work.
3) Insomnia. It was terrible. I was dead tired and could not fall asleep and, when I did fall asleep, it was hard staying asleep. The slightest noise would wake me up.
4) Pain (FM). I hurt all over all the time. Eventually this started to steal the joy from every moment. It felt like my muscles would clench uncontrollably especially when I would sleep. I got a mouth guard because I was grinding my teeth. I had to get both a top and bottom piece because I was slowly wearing through the top guard. It was pricey, $300, but better than fixing cracked teeth.
5) Brain fog. It was hard to think. I felt drunk most of the time. I wasn't able to read or learn anything new.
6) Static in the brain. This is very hard to describe. The only analogy I have been able to come up with is it's like listening to an AM radio station with lots of static. My brain was working but there was lots of interference. To this day I still have trouble listening to music. It just doesn't sound right.
7) Sensitivity to noises. The tiniest noise would bother me. My neighbor had dogs that would bark all day and it drove me insane.
8) Sensitivity to smells. Certain scents, especially perfumes and the like, made me feel dizzy and sick.
9) Sensitivity to touch. I didn't like being touched. I had to stop wearing jewelry (e.g. watch, ring, necklace).
10) My vision started going black-and-white-ish. I saw colors but they looked dull.
11) Intolerance to cold. I was always freezing even when I was in bed with the covers piled high and sweating. This is what helped me diagnose HT2
12) Irritable bowel syndrome (IBS). That's a euphemism for gas (both ends), bloating and loose, watery stool. Worse, I always had this pain in my gut. Eating would make it worse. Sometimes I would be starving but I wouldn't eat because it would hurt so bad. When I did eat, food would travel through me in 5-6 hours.
13) Memory problems. It was hard to remember things.
14) Irritability.
15) Anxiety.
16) Depression but, and I want to make this clear, it was a symptom not the source problem.

 

[Sushi]

Many US patients will call their illness ME or ME/CFS or CFIDS as more accurate descriptions. Some doctors will even write ME in a patient's medical file, but the medical coding for our illness is 780.71 Chronic Fatigue Syndrome.

I am in the US, have an ME diagnosis but doctors do have to code it as Chronic Fatigue Syndrome. Actually, most have my docs put in 4 or 5 codes to ensure insurance coverage but none of them is for ME. One of those things we live with.

Sushi