My Experience With Dr. Kaufman at the Open Medicine Institute

[taniaaust1]

Looking at your supplements, if you had MTHFR double mutation.. just the methyl folate and the methyl B12 may of make quite a difference in improvement.

Your symptoms are much like mine so Im looking forward to going back to to the start of this thread and working my way throu it during the next few days or so.

He helped get me to my feet, but I couldn't support my own weight. I collapsed on the floor and couldn't move. I could still breathe, but it was difficult. I barely managed to whisper and explain what was wrong. My body was no longer under my control at all. I couldn't move my own body. This happened twice.

Ive had paralyses too. I had one horrific day where I as paralysed in bed, I couldnt even move my fingers (it was like the messages to my nerves telling them to move didnt work, I just couldnt move them no matter how hard I tried, they wouldnt even twitch for me). It was terrifying not being able to move even a finger. (I was in such a bad ME flareat the time I was having trouble opening my eyes.. it was a massive effort to do so).

My legs can not work too, unfortuntely it isnt a rare thing in my case (it usually happens to me at least several times a year or more).. like a baby who cant support weight at times (at such times I still cant even hold myself up when Im being supported by another). I rarely hear others mention paralyses here so wanted to comment to your post.

 

[jeff_w]

Looking at your supplements, if you had MTHFR double mutation.. just the methyl folate and the methyl B12 may of make quite a difference in improvement.

The Methyl B's did make a difference. I was on them for 2 months before adding the other supplements. The others have definitely helped a lot, on top of the Methyl B's.

Ive had paralyses too. I had one horrific day where I as paralysed in bed, I couldnt even move my fingers (it was like the messages to my nerves telling them to move didnt work, I just couldnt move them no matter how hard I tried, they wouldnt even twitch for me). It was terrifying not being able to move even a finger. (I was in such a bad ME flareat the time I was having trouble opening my eyes.. it was a massive effort to do so).

I rarely hear others mention paralyses here so wanted to comment to your post.

I haven't heard many others talk about this either. Terrible to go through, hope you can wipe it out of your life forever. It was the worst experience of my life.

 

[jeff_w]

Update:

So basically, I'm now able to drive short distances! I also feel alive again--though this alive feeling isn't constant. I haven't felt alive for several years, so this change has been amazing.

Yesterday, I felt unusually well and became restless being cooped up at home. I really wanted to go to Barnes and Noble and lounge in their cafe, reading a book or two. So... I did that. Driving over there felt sublime. I felt free and happy... driving was almost a spiritual experience after having been so ill. (I have been going out to coffee with friends during recent times, but they would always drive).

When I got to Barnes and Noble and sat down in the cafe to read... it wasn't so great! There was a lot of noise and bustle around me, and I started to feel dizzy and nauseous. I left after 15 minutes.

I don't see the trip as a waste, because on my drive home, I felt well again. I was well enough to stop at a gas station, fill up my tank, and wash my back windshield! I felt "normal" in many ways. I had no discernible PEM afterward, and I still don't today.

When I was at my sickest (bed-bound and wheelchair-bound with IV saline and home health nurses), I loved reading other people's recovery stories on here. Since starting treatment, my trend has been steady improvement. A combination of Valcyte and Famvir is working extremely well for me, along with taking Methyl Bs and treating POTS. Resting way more than I want to and taking supplements backed by peer-reviewed research have also helped a lot.

I'm keeping my updates in this thread, because it is Dr. Kaufman and the OMI who I thank for my improvements. This way, anyone considering going to them can take my experience into account.

 

[NK17]

So glad to hear about your remession @jeff_w.
If we finally get our governments to listen to us and our ME doctors, I think that we'll all get a shot at having a life again.
Thank you for sharing with us.

 

[jeff_w]

So glad to hear about your remession @jeff_w.
If we finally get our governments to listen to us and our ME doctors, I think that we'll all get a shot at having a life again.
Thank you for sharing with us.

@NK17 - Thanks!

Wow, remission. I think I'm steadily approaching remission, but I have a long way to go still. I wish I could have sat in Barnes and Noble enjoying a book for hours. I only lasted 15 mins due to ME/CFS making me dizzy and nauseous.

As for getting the governments to care: Yes. My thinking is that money speaks to governments. This is sad and cynical... but factual, IMO. So if government perception becomes that it is economically advantageous to cure ME/CFS, then we're set. The way to do that is with reports showing how costly this disease is to the country's economic productivity.

I wish that the government funding could be swayed by compassion, but it just doesn't seem to be.

 

[NK17]

@jeff_w let's say that you've taken the first small step on the road to remission (read it in a wispering voice)

I couldn't agree more with you on all the points you've made.

I want to hear more stories of young bright talented people like you and I want more doctors like Dr. Kaufman.

 

[jeff_w]

Minor Update:

Sunday night (2 nights ago), I was feeling well. So I decided to do push-ups. After doing 2(!) my heart was pounding. I felt it would be wise to stop, even though my muscles weren't strained at all and I had the strength to have handled many more.

Unfortunately, those two push-ups triggered 2 days of sleepiness. It's odd in that this doesn't feel like my "old" PEM, which was much worse than this. It's as though I now have a milder form of PEM. I'm just disappointed that two measly push-ups could have such a negative impact.

On the positive side, the sleepiness wasn't awful, and I was still able to go to Starbucks today with a friend. This Starbucks is right around the corner from where I live, and my friends are always kind enough to drive.

I figured I'd post my "Push-ups Story" as a general reminder that we shouldn't push ourselves--no matter how well we may feel. I'm sure everyone already knows this, but sometimes it helps reinforce a message to hear another person's stories.

 

[Folk]

@jeff_w
I'm not denying your experience, but are you sure it was the push ups?

I mean, 2 push ups shouldn't require more from your body than walking as much as you've been doing should it?

 

[jeff_w]

@jeff_w
I'm not denying your experience, but are you sure it was the push ups?

I mean, 2 push ups shouldn't require more from your body than walking as much as you've been doing should it?

You know, @Folk , I have wondered the same thing. I concluded it was the push-ups because of what that did to my heart rate. It felt like my heart rate was "off" the day after and today. Walking never gets my heart rate going like those push ups did.

It could have been something else, sure, but the push-ups were the only change I made to my daily routine. I'll never know for sure unless I repeat them a few times, which I'm not in a hurry to do anytime soon.

 

[Sushi]

I mean, 2 push ups shouldn't require more from your body than walking as much as you've been doing should it?

Many of us have great problems with upper body exercise--especially using the arms. I can do a great deal more with my legs than with my arms. There are scientific explanations for this, but I forget them!

Sushi

 

[Gingergrrl]

@jeff_w You did not listen to me after I told you not to try to exercise yet .

But seriously, I am saying this as your friend, I truly believe that trying to do strenuous exercise like push ups this early in your recovery could trigger a set back or relapse.

You have made incredible progress which will only continue. But until you can do and sustain all ADL's and IADL's with energy to spare, I would not attempt exercise yet. You still need to keep your heart rate in range for now and Sushi is right that arm strength is usually more fragile with dysautonomia.

I know it is so hard to be patient and I struggle with this every day but please be careful!

 

[jeff_w]

@jeff_w You did not listen to me after I told you not to try to exercise yet .

But seriously, I am saying this as your friend, I truly believe that trying to do strenuous exercise like push ups this early in your recovery could trigger a set back or relapse.

I know it is so hard to be patient and I struggle with this every day but please be careful!

@Gingergrrl - Thanks. I'm not going to do that again anytime soon.

 

[Mij]

You know, @Folk , I have wondered the same thing. I concluded it was the push-ups because of what that did to my heart rate. It felt like my heart rate was "off" the day after and today. Walking never gets my heart rate going like those push ups did.

It could have been something else, sure, but the push-ups were the only change I made to my daily routine. I'll never know for sure unless I repeat them a few times, which I'm not in a hurry to do anytime soon.

I can power walk up to an hour now- no problem, but if I do 20 squats it makes my heart rate go right up and I'm trembling after.

 

[Sushi]

You still need to keep your heart rate in range for now and Sushi is right that arm strength is usually more fragile with dysautonomia.

I believe it isn't so much a matter of the strength of the arms but that using them in certain ways, triggers a response in the autonomic nervous system. Later (maybe! ) I'll try to look it up.

Wearing an HR monitor can show you just what activities to avoid. I wear one for my pilates class and can keep up with the others when using core muscles or legs, but with arms, not so. My HR goes up and I have to skip every other rep on some exercises.

Sushi

 

[helen1]

Strange. I have the opposite reaction in that I can do an upper body workout (close to a 'real' one with say 2-3 sets of 4 upper body weights exercises) with no PEM but if I try lunges or squats or stationary bike riding I can crash quite badly. I wonder why that is... Any ideas? Is it just that leg muscles are bigger and so use up more energy?

Edit:That's probably not it as i just remembered I could swim for 30 minutes no problems this summer and fall during a long crash but couldn't walk for that long without dire consequences. I actually felt better after each swim for a few hours. I think the water pressure stimulated the lymph system plus it was cold so that was a double lymph stimulus.

 

[Gingergrrl]

It may also relate to dysautonomia. I cannot do anything that involves lifting my arms above my head such as use a hairdryer or put a plate in microwave (which is much taller than me.). Doing this triggers immediate shortness of breath, weakness, OI, tachycardia etc. whereas using my legs that is not the case. I could push in a chair or move something with my legs that I wouldn't dream of attempting with my arms.

ETA If I am trying to play with my dog, I could kick a toy with my feet but could not throw it with my arms.

 

[Gingergrrl]

I believe it isn't so much a matter of the strength of the arms but that using them in certain ways, triggers a response in the autonomic nervous system. Later (maybe! ) I'll try to look it up.

@Sushi Thank you for clarifying and I definitely don't want to mis-quote you! I think in my personal case, it is a combination both of very weak arm strength and autonomic issues but this may not be so for everyone. If you do investigate this, I would be curious what you find.

 

[Mij]

I can not do resistance/strength training type exercise for more than 3 minutes, this includes biking ie pushing against pedals. I would like to but I find this brings my heart rate up. I need more muscle strength but if it's counter productive and makes me feel worse then I can only do a few minutes.

 

[helen1]

I wonder too about how the various infections we have influence our symptoms during physical activity.

 

[GRACED]

oops thought I was responding to someone else