Just back from Dr. Nancy Klimas

[shastamax]

Sorry to hear your appointment had some issues, im surprised that her clinic is so disorganized. She certainly has a good reputation as an ME doctor and it sound like it wasnt all bad.

Can i ask why she wanted to change you from Amitriptyline to Doxepin? Im interested because i take Amitriptyline for sleep too. I also got a sleep study as my ME doc who diagnosed me wanted to rule out sleep apnea. I didnt have it, but it was definately good to rule it out and discover exactly was happening.

I really hope it works out for you, keep us posted!

The switch in sleep meds was because doxipen is a little more sedating. Also, our bodies adapt to both drugs (I started at 5 mg amitrip and am now taking 25), so switching back and forth between the 2 drugs will minimize this effect. I've been quite happy with amitrip- it's the only thing I've ever taken that helped!

 

[shastamax]

Sorry to hear your appointment had some issues, im surprised that her clinic is so disorganized. She certainly has a good reputation as an ME doctor and it sound like it wasnt all bad.

Can i ask why she wanted to change you from Amitriptyline to Doxepin? Im interested because i take Amitriptyline for sleep too. I also got a sleep study as my ME doc who diagnosed me wanted to rule out sleep apnea. I didnt have it, but it was definately good to rule it out and discover exactly was happening.

I really hope it works out for you, keep us posted!

The change in sleep meds was because doxepin is a little more sedating. also, our bodies addapt to both drugs (higher dose needed over time to get the same effect) so she recommends switihgin back and forth between dox and amitrip to minimize this.

 

[snowathlete]

The change in sleep meds was because doxepin is a little more sedating. also, our bodies addapt to both drugs (higher dose needed over time to get the same effect) so she recommends switihgin back and forth between dox and amitrip to minimize this.

that makes sense. my body has started to resist amitriptyline a bit the last few months, but im putting off increasing dose for as long as i can.

 

[SanDiego#1]

that makes sense. my body has started to resist amitriptyline a bit the last few months, but im putting off increasing dose for as long as i can.

Snow-I don't understand why no one is trying Magnesium Sulfate inj or paste to sleep? You can use with most of these drugs and don't have to take so many meds that are addictive. I am sensitive to everything and this works. You can use as little or as much as you need.You can also get paste or cream without a RX.

San Diego

 

[snowathlete]

Snow-I don't understand why no one is trying Magnesium Sulfate inj or paste to sleep? You can use with most of these drugs and don't have to take so many meds that are addictive. I am sensitive to everything and this works. You can use as little or as much as you need.You can also get paste or cream without a RX.

San Diego

I haven't really looked into it that much. Go back four or so years and I would have tried anything, but since I had a sleep study and saw a decent sleep consultant who prescribed me the Amitryptaline I just dont want to rock the boat. Amitryptaline, for me, has been a massive success. If I became too resistant to it, then id go back to the sleep specialist again, but good to know that other things work for some people with ME/CFS. Some people don't get on with Amitryptaline. Sleep is a big issue in ME/CFS and fixing mine has improved my quality of life, so i highly reccomend that people try and do something about it, because its one of the few areas where you can treat the symptoms and in the UK the NHS recognise it and will refer you for proper help.
Nuts that isn't it. I go into my docs office with ME/CFS and they arent interested, but i go in saying i cant sleep and they are willing to take it seriously and throw loads of cash at it. Crazy.

 

[anniekim]

These came in response to inquiry from another Dr. about using GcMAF either chemical from the Netherlands or Probiotic from Dr. Ruggiero in Italy. He states the Probiotic GcMAF is stronger and more primordial in concept and is not a drug like chemical GcMAF. He says however he would use neither if your Nagalase is below 2.5-3.0 and would stop altogether if it after it drops to 1.5.As Nagalase drops to 1.5 he saw sig cytokine storms. He says not to mix GcMAF and Vitamin D as they are synergistic. He said he eventually tapered probiotic GcMAF to raw colostrum from Kirkmans lab in Plain yogurt. This is as technical as I can get. Also said stem cell therapy seem to work or had benefits during the first year but after that had varying degrees of relapse (full or partial). Best benefits were for those under 35. Says has seen some success with both with both GcMAF and afterbirth derived from Stem Cells/ But there are many different outcomes and complicating factors.

San Diego

San Diego, thanks for that info. Sorry for being a bit slow but just want to check when you're referring to 'he' throughout, you are referring to Dr Cheney? Is he saying then that if Nagalase is high then he would prescribe Gcmaf still but under 1.5 he would recommend the colostrum? How is the colostrum supposed to help people with the illness? Many thanks

 

[SanDiego#1]

I haven't really looked into it that much. Go back four or so years and I would have tried anything, but since I had a sleep study and saw a decent sleep consultant who prescribed me the Amitryptaline I just dont want to rock the boat. Amitryptaline, for me, has been a massive success. If I became too resistant to it, then id go back to the sleep specialist again, but good to know that other things work for some people with ME/CFS. Some people don't get on with Amitryptaline. Sleep is a big issue in ME/CFS and fixing mine has improved my quality of life, so i highly reccomend that people try and do something about it, because its one of the few areas where you can treat the symptoms and in the UK the NHS recognise it and will refer you for proper help.
Nuts that isn't it. I go into my docs office with ME/CFS and they arent interested, but i go in saying i cant sleep and they are willing to take it seriously and throw loads of cash at it. Crazy.

Snow- I understand. I just like to be on the least addictive thing I can be on. I also- to make sure I do not become deconditioned do moderate exercise -stretching, yoga (lightly). Even in the middle of the night if I wake up. It actually helps me to go back to sleep and helps circulation. Before I was a pretty active athlete. Cheney rec this also. Of course when I am really sick I have to REST, REST, REST. I know everyone is going to roll their eyes when I have said this. However i never plan to abandon conditioning exercises.Does the Amitryptaline make you sleepy the next day?

San Diego

 

[SanDiego#1]

San Diego, thanks for that info. Sorry for being a bit slow but just want to check when you're referring to 'he' throughout, you are referring to Dr Cheney? Is he saying then that if Nagalase is high then he would prescribe Gcmaf still but under 1.5 he would recommend the colostrum? How is the colostrum supposed to help people with the illness? Many thanks

Anniekim- Don't know how to rewrite what I wrote. Dr. Cheney is who I am referring to. He said " He would use neither chemical GcMAF or Probiotic GcMAF if Nagalase was below 2.5-3.0. He does rec Probiotic raw Colostrum from Kirkman's Lab. Even if it drops to 1.5. I have done well on Kirkman Labs Colostrum. 1 tsp daily.

San Diego

 

[SanDiego#1]

Anniekim- Don't know how to rewrite what I wrote. Dr. Cheney is who I am referring to. He said " He would use neither chemical GcMAF or Probiotic GcMAF if Nagalase was below 2.5-3.0. He does rec Probiotic raw Colostrum from Kirkman's Lab. Even if it drops to 1.5. I have done well on Kirkman Labs Colostrum. 1 tsp daily.

San Diego

Sorry forgot to say- The Colostrum boost your Immune System. I am using it in place of Human Immune Globulin shots.
which I have taken for years. However-they changed the formula and it does not work for me anymore.

SD

 

[snowathlete]

.Does the Amitryptaline make you sleepy the next day?
San Diego

No, not at all. The first two weeks i had terrible side effects, and then nothing after that except dry mouth in the night.

I try to do some stretches, but often dont feel up to it, but if i dont do it enough then my legs hurt more, so that prompts me to start again. I used to be very athletic before. I miss swimming especially.

 

[SanDiego#1]

No, not at all. The first two weeks i had terrible side effects, and then nothing after that except dry mouth in the night.

I try to do some stretches, but often dont feel up to it, but if i dont do it enough then my legs hurt more, so that prompts me to start again. I used to be very athletic before. I miss swimming especially.

Snow
I do alot of mine in bed before and after I go to sleep. I have back stenosis and learned 2 years ago what the physical therapist showed me. They told me I needed surgery. BUT-----No back problems as long as I do leg exercises. And Core

 

[SOC]

Snow
I do alot of mine in bed before and after I go to sleep. I have back stenosis and learned 2 years ago what the physical therapist showed me. They told me I needed surgery. BUT-----No back problems as long as I do leg exercises. And Core

Can you teach me to exercise after I go to sleep? That would be SO useful! Just kidding, of course. I know what you meant.

Do you find that exercising before you get out of bed affects your BP/HR/energy? I do well if I exercise before sleeping, but not when I wake up. It tends to mess up my ability to get my BP/HR stable.

 

[SanDiego#1]

Can you teach me to exercise after I go to sleep? That would be SO useful! Just kidding, of course. I know what you meant.

Do you find that exercising before you get out of bed affects your BP/HR/energy? I do well if I exercise before sleeping, but not when I wake up. It tends to mess up my ability to get my BP/HR stable.

SOC- No it seems to actually clear my head-Cognitive wise. I do everything on my back but leg raises and I hold straight leg to count of 30 3x on each leg.plus pulling legs up to stomach and then separate to stomach. I have 85 lb dog that sleeps with me and she now rolls back and forth at 2:00AM sometimes thinking we are playing. The movements work well when I use Mag cream. I guess it gets in bloodstream quicker.As you can tell-I don't do anything like anyone else. However Cheney started rec this to patients that wake up.Another answer to your question-if I happen to be having
fast HB when I wake up. I don't do the exercises. My BP in the AM is sometimes 90/50 lying down. I ask Cheney about it
"Is it dangerous"? He said only if you are DYING!!!!!
Enjoy the Posts!!!

SD

 

[shastamax]

No, not at all. The first two weeks i had terrible side effects, and then nothing after that except dry mouth in the night.

I try to do some stretches, but often dont feel up to it, but if i dont do it enough then my legs hurt more, so that prompts me to start again. I used to be very athletic before. I miss swimming especially.

Start low with the amitriptyline- 5 mg was plenty for me for several weeks until my body adapted to it.

 

[SanDiego#1]

Start low with the amitriptyline- 5 mg was plenty for me for several weeks until my body adapted to it.

On a different note- I have been having terrible dizzy spells and almost like I was going to pass out when I would lay on my left side just this past week. Saw my Chiropractor yesterday and he worked on me for 1-1/2 hours. I came home and slept for 2 hours. All Dizziness is gone!!!Is going to see me again in 2 weeks unless I get worse. It was amazing. I work with big dogs but have tried to be very careful. He said it was almost like my head was sitting to the left of my shoulders.
Of course he adjusted me all over.. This is the 2nd time this has happened this way and he has cleared it up. Of course he is very gentle with the adjustment.