- Messages
- 7
- Location
- Australia
Hello, I am a 53yo woman who thought her ordeal with CFS was over until the past 3 weeks when I have been undertaking treatment for pyrole disorder and undermethylation.
I suffered from CFS terribly in 2007 (housebound for 4 months, had to move back in with my parents as I could not look after myself). At my worst I weighed 53 kg - and when I began to get a TINY bit of improvement I suddenly gained 10 kilos in 3 months! The improvement was extremely slow and frustrating, but none the less I did eventually improve enough to go back to work 2 days per week in 2008 for about 6 months, only to relapse again. Symptoms were not as severe the second time around. I did once again improve ever so slowly and was able to return to work gradually, working up to 3 full days per week (plus 3 hours travel per day). A major achievement!
Next major achievement was recommencing exercise - now that took a LONG time. Initially being able to walk for 5 minutes, working up to 20 minutes over many months, and then stalling on that for ages. I started Tai chi which I had done years earlier, and I do think this helped get my exercise ability going a little more. And then eventually worked my way up to zumba (yay!!!)
So I have been really leading a normal life for last 2 to 3 years, probably would have considered myself 90% better - still couldn't go out much after work; big night out would knock me out for weeks; hard zumba class would have to have a sleep in the arvo, basically good as long as all the ducks were in a row; but really I probably didn't appreciate how good I was until now.
I have always been a bit of a worrier and bit anxious, and prior to CFS I developed kind of a phobia about driving because I felt off balance or something - this followed getting tinnitus about 2 years prior to CFS.
I have had MAJOR stress at work since November 2012. I have worked there for over 30 years, and new people took over, put in a firm to interview us all in preparation for a restructure and possible job losses. And the stress has been unrelenting since. My levels of anxiety had sky rocketed, and I noticed that I was very irritable and not reacting normally to stress. I was having a lot of sleeping difficulty - some nights so "wired" that I hardly slept all night, other times I would get to sleep easily, but wake at 1 or 2am and not be able to get back to sleep until 5 or 6am.
Decided to meet friends o/s on spur of moment, and the rush and panic about packing/work/organising trip meant I did not sleep much for 2 nights. This I think led to arrythmia for about 2 hours one day, then next evening on the plane I got the scary arrythmia back accompanied by nausea, sweating and diahhrea. Felt as though I was going to die on that plane! It lasted about 2 hours and the stewardess gave me some electrolyte solution which I think did help settle me down a bit. Sounds like a kind of panic attack I guess, but was feeling very happy and relaxed when it started! Anyhow, had a lovely holiday and did no exercise cause I didn't want to have to get medical attention in Bali.
So when I came home I went to the dr to find out what was going on with me. That's when she sent me for the bloods and urinary kryptopyroles test. My integrative doctor said I have pyroluria and undermethylation, with copper overload (40% free copper). She put me onto what I thought would be harmless supplements (B6 50mg, zinc picolinate 30mg, Vit C 2000, EPO, Magnesium 500 2x day, Molybdenum 1 mg, basic B complex).
Well within 2 days I was feeling really weird in the head, spacey, dizzy, more tired, increased anxiety, just strange. I changed P5P to normal B6. Still felt weird. When I contacted doc she advised me to increase the B6 to 100mg, which I did. And I kind of felt myself getting a lot of my old CFS symptoms back - my tinnitus is much worse, dizziness/off balance feeling, can't find the right words for things, difficulty in concentrating, increased tiredness, and the scariest of them all since 4 days ago - feeling that I am having trouble getting my legs moving.
Saw my doc today and she says i am having a relapse, take 2 - 4 weeks off work and has recommended some supps to pick me back up. They are: ALA, L-carnitine, glutathione cream and ubiquitol. I have only taken one ALA so far. She also said to consider Vit C IV - has sent me for blood test to see if I am suitable for it.
Then I started reading this forum and saw a lot of scary stuff about ALA mobilising mercury - last thing I want! I have also just ordered a 23andme test (might take a while as I am in Australia) because from what I have gathered in reading this site this week, there are many more genetic defects than pyroluria/undermethylation that might be affecting the way the B6 and zinc etc. are affecting me. My doctor repeatedly reassures me that it is not the B6/zinc that has provoked this relapse, but I am really wondering. And I am definitely not taking any more ALA until I can find more info here.
Sorry this is so long - but I am really scared and not sure what to do next. Thank you if any of you very clever people are able to offer me any words of wisdom.
I suffered from CFS terribly in 2007 (housebound for 4 months, had to move back in with my parents as I could not look after myself). At my worst I weighed 53 kg - and when I began to get a TINY bit of improvement I suddenly gained 10 kilos in 3 months! The improvement was extremely slow and frustrating, but none the less I did eventually improve enough to go back to work 2 days per week in 2008 for about 6 months, only to relapse again. Symptoms were not as severe the second time around. I did once again improve ever so slowly and was able to return to work gradually, working up to 3 full days per week (plus 3 hours travel per day). A major achievement!
Next major achievement was recommencing exercise - now that took a LONG time. Initially being able to walk for 5 minutes, working up to 20 minutes over many months, and then stalling on that for ages. I started Tai chi which I had done years earlier, and I do think this helped get my exercise ability going a little more. And then eventually worked my way up to zumba (yay!!!)
So I have been really leading a normal life for last 2 to 3 years, probably would have considered myself 90% better - still couldn't go out much after work; big night out would knock me out for weeks; hard zumba class would have to have a sleep in the arvo, basically good as long as all the ducks were in a row; but really I probably didn't appreciate how good I was until now.
I have always been a bit of a worrier and bit anxious, and prior to CFS I developed kind of a phobia about driving because I felt off balance or something - this followed getting tinnitus about 2 years prior to CFS.
I have had MAJOR stress at work since November 2012. I have worked there for over 30 years, and new people took over, put in a firm to interview us all in preparation for a restructure and possible job losses. And the stress has been unrelenting since. My levels of anxiety had sky rocketed, and I noticed that I was very irritable and not reacting normally to stress. I was having a lot of sleeping difficulty - some nights so "wired" that I hardly slept all night, other times I would get to sleep easily, but wake at 1 or 2am and not be able to get back to sleep until 5 or 6am.
Decided to meet friends o/s on spur of moment, and the rush and panic about packing/work/organising trip meant I did not sleep much for 2 nights. This I think led to arrythmia for about 2 hours one day, then next evening on the plane I got the scary arrythmia back accompanied by nausea, sweating and diahhrea. Felt as though I was going to die on that plane! It lasted about 2 hours and the stewardess gave me some electrolyte solution which I think did help settle me down a bit. Sounds like a kind of panic attack I guess, but was feeling very happy and relaxed when it started! Anyhow, had a lovely holiday and did no exercise cause I didn't want to have to get medical attention in Bali.
So when I came home I went to the dr to find out what was going on with me. That's when she sent me for the bloods and urinary kryptopyroles test. My integrative doctor said I have pyroluria and undermethylation, with copper overload (40% free copper). She put me onto what I thought would be harmless supplements (B6 50mg, zinc picolinate 30mg, Vit C 2000, EPO, Magnesium 500 2x day, Molybdenum 1 mg, basic B complex).
Well within 2 days I was feeling really weird in the head, spacey, dizzy, more tired, increased anxiety, just strange. I changed P5P to normal B6. Still felt weird. When I contacted doc she advised me to increase the B6 to 100mg, which I did. And I kind of felt myself getting a lot of my old CFS symptoms back - my tinnitus is much worse, dizziness/off balance feeling, can't find the right words for things, difficulty in concentrating, increased tiredness, and the scariest of them all since 4 days ago - feeling that I am having trouble getting my legs moving.
Saw my doc today and she says i am having a relapse, take 2 - 4 weeks off work and has recommended some supps to pick me back up. They are: ALA, L-carnitine, glutathione cream and ubiquitol. I have only taken one ALA so far. She also said to consider Vit C IV - has sent me for blood test to see if I am suitable for it.
Then I started reading this forum and saw a lot of scary stuff about ALA mobilising mercury - last thing I want! I have also just ordered a 23andme test (might take a while as I am in Australia) because from what I have gathered in reading this site this week, there are many more genetic defects than pyroluria/undermethylation that might be affecting the way the B6 and zinc etc. are affecting me. My doctor repeatedly reassures me that it is not the B6/zinc that has provoked this relapse, but I am really wondering. And I am definitely not taking any more ALA until I can find more info here.
Sorry this is so long - but I am really scared and not sure what to do next. Thank you if any of you very clever people are able to offer me any words of wisdom.
