My Experience With Dr. Kaufman at the Open Medicine Institute

[heapsreal]

@heapsreal If I try it 3x/wk for a few weeks and it continues to help me as much as the initial infusion, then I will look into other options. I feel like I am too early in the process for those now and first need to work on getting a new prescription.

As far as desmopressin, I have gotten a lot of conflicting feedback and the consensus seemed to be that I should not take it as I do not have DI, polyuria or polydipsia which it is meant to treat. I know it can increase the fluid in your cells so you urinate less but in my case it seemed dangerous due to possible side effects like water poisoning or hyponatremia. We talked about it in another thread and I cannot explain the science very well except that it didn't seem right for my situation. With Desmopressin you have to restrict your fluid intake and I have been instructed to drink Pedialyte, increase fluids and do IV's so it would all contradict.

Desmo just an example but meaning other medication options for BP if infusions become inconvenient or costly etc.

understand it's early days but always good to have alternatives.

 

[Gingergrrl]

@heapsreal Absolutely and I am always trying to research all my alternatives! My BP right now is 103/72 which is amazing for me and I feel significantly better today so I can only attribute it to the Midodrine even without the saline. I am trying to get the PA to write me a new saline prescription b/c my cardio is out of town until next week.

Thanks again to all for the great feedback and ideas.

 

[jeff_w]

My BP right now is 103/72 which is amazing for me and I feel significantly better today so I can only attribute it to the Midodrine even without the saline.

I have a different take on this, @Gingergrrl

For me, my OI meds reach their maximum effectiveness only if I have enough blood volume, which I only have with saline infusions. My best guess is that the Midodrine has become way more effective for you at this point due to the saline itself. Even if your last infusion was a few days ago, you still have more blood volume to work with than you ordinarily would.

I have read research indicating that saline alone lowers blood pressure in OI cases. This happens because the heart no longer needs to pump furiously to maintain circulation. When enough blood volume is there, the heart stops working as hard.

 

[Gingergrrl]

@jeff_w that is really interesting and do you think that the saline from last Thurs (four days ago) is still helping me? If so that would be amazing! I agree with you that the combo of saline and Midodrine together is what really helped me. I got a response from the PA (b/c my cardio is out of town) and she is going to contact him re: increasing my IV saline prescription so hopefully I will get an answer soon!

I have also been drinking extra Pedialyte and coconut water to try to increase my blood volume. I struggle to drink plain water and usually end up drinking 4-6 cups per day but am trying new mixtures of things and now drinking at least 8 cups per day which I think is helping too. You are so kind with all your responses and feedback and really appreciate it!

 

[jeff_w]

@jeff_w that is really interesting and do you think that the saline from last Thurs (four days ago) is still helping me? If so that would be amazing! I agree with you that the combo of saline and Midodrine together is what really helped me. I have also been drinking extra Pedialyte and coconut water to try to increase my blood volume. I struggle to drink plain water and usually end up drinking 4-6 cups per day but am trying new mixtures of things and now drinking at least 8 cups per day which I think is helping too.

From all the research I've read and from conversations I've had with doctors who actually know what they're talking about... I'd say the saline combined with your drinking extra fluids is helping the Midodrine work better. That has been my personal experience, too.

You are so kind with all your responses and feedback and really appreciate it!

Oh, you bet. Getting sick has made me a nicer person. I used to spend all my time lifting weights, running, and having fun. Now I feel like there's a whole community of us who are very, very sick. There are no set-in-stone, standard medical answers for our problems yet. So sharing information on this forum is very important, and I'm glad to help.

 

[RUkiddingME]

Wow I'm so glad I found this thread. I'm a patient of Dr. Kogelnik at OMI, have only seen him once -loved him- and the follow ups over the phone (I'm in Canada). If I end up seeing Dr. Kaufman for my next visit, looks like I would be in excellent hands! He sounds extremely thorough

 

[Gingergrrl]

@RUkiddingME I am also a patient of Dr. Kaufman and he is amazing as Jeff said. Actually both doctors are incredible and we are in really good hands as Jeff said. And @jeff_w, I bet you were a nice person before you got sick, too !

 

[jeff_w]

@jeff_w
I also wanted to clarify in an earlier post, you said you had the IV in your hand (or arm?) for 4-5 days at a time? I had that in the hospital but didn't realize you could do that outside of a hospital. Did it ever get infected?

@Gingergrrl

Yes, I keep the IV in my hand or arm for 5 days. Then it is removed and another IV is inserted in my other arm by a nurse at the infusion center. When I go out (which is rare), I cover the IV with an ace bandage so that people don't see it.

It never got infected. It got warm and itchy a few times, which is the very beginning stage of an infection, more like a "pre-infection." As soon as I felt that, I removed it myself and had a new one inserted the next day.

 

[Gingergrrl]

@Gingergrrl

Yes, I keep the IV in my hand or arm for 5 days. Then it is removed and another IV is inserted in my other arm by a nurse at the infusion center. When I go out (which is rare), I cover the IV with an ace bandage so that people don't see it.

It never got infected. It got warm and itchy a few times, which is the very beginning stage of an infection, more like a "pre-infection." As soon as I felt that, I removed it myself and had a new one inserted the next day.

@jeff_w Thanks for clarifying and I am going for my second saline IV tomorrow (the appt got moved a day earlier which is fine with me!) I am in limbo until my cardio returns next week but grateful to be getting the saline 1x/wk at this point. Did they teach you how to remove the IV yourself? I would have no idea how to do that and be afraid to cause myself more problems if I messed it up. Not saying at all that you did, but in my case I would be scared to touch it.

 

[Valentijn]

@jeff_w Thanks for clarifying and I am going for my second saline IV tomorrow (the appt got moved a day earlier which is fine with me!) I am in limbo until my cardio returns next week but grateful to be getting the saline 1x/wk at this point. Did they teach you how to remove the IV yourself? I would have no idea how to do that and be afraid to cause myself more problems if I messed it up. Not saying at all that you did, but in my case I would be scared to touch it.

Unhooking the IV is quite simple, and even removing the cannula from the vein is very easy if you have help. I did it one-handed after finishing up my infusions because I really hated having it in one minute longer than absolutely necessary.

Basically I would just carefully peel off the big sticking thing holding it down, starting at the edges and working my way inward. As soon as I get near the cannula, it's nice to be able to hold it in place somewhat while removing the rest of the sticky thing from being attached to my hand. Once the cannula is loose (still in my vein but not held in place), I'd hold a folded gauze pad against the insertion site and carefully pull the cannula straight out.

I watched the nurses do everything for a few weeks, though it also could be a good to have them supervise you doing it once or twice to make sure you're doing everything just right.

 

[knackers323]

Interesting thread

 

[SDSue]

@jeff_w I just found this thread and am sitting on the edge of my seat wondering how you are doing and if you've improved since your last post. Any chance you might give an update? Thanks.

 

[jeff_w]

Time for an update! Thanks @SDSue for the reminder.

Right now, I'm smiling as I write this. I've improved a lot. I've been having coffee with friends again on a regular basis.

I can now leave the house for 4.5 hours. I went out to Black Angus restaurant with family on New Year's Eve. I lasted for their entire 5 hour visit without fatigue. I sat up, talked, laughed, and joked at the restaurant like an "almost healthy" person. I did not need a wheelchair. I also had NO PEM the next day.

My most recent visit with Dr. Kaufman was December 15th. He said to me, "You are making a remarkably fast recovery. This is not typical." I am so thankful for that man...beyond words. If I had a healthy body and he needed a kidney from me, I'd give him one.

Granted, I'm not fully well by any stretch. I didn't sleep one night last week due to insomnia, and I had to spend the majority of the next two days in bed, feeling like absolute hell, as though I had regressed months in my illness. The former "pre-illness Jeff" could handle sleepless nights like a pro. But after 3 days, I fully bounced back to my new, "much-less-sick" normal.

I still have to watch my energy levels daily. Brain fog is ever-present, but it is way better. I can read and do web design again, albeit not as quickly and with rest breaks.

There's still no way I could return to grad school at this point, not even half time, or even handle a part time desk job. Five hours of activity sitting up is my new, absolute limit. I am very careful to not go out and push myself to my limit everyday. I thank @SOC for driving home this point in her posts about her and her daughter's recoveries. She gave remarkably helpful advice. I force myself to rest way more than I want to and recognize how fortunate I am to be able to do this. I've learned to say to myself and to friends "let's do this another time," without feeling extremely angry at my own limitations.

Without this board, I never would have known to go see Dr. Kaufman, and I never would have gone on antivirals or learned to rest appropriately. I was almost a vegetable before seeing him. I couldn't feed myself, my mother had to make me protein shakes with olive oil that I could drink through a straw, as lifting a fork and chewing were too much. There were times when I couldn't speak and had to communicate with a pen and paper. When I had to go to the doctor, I was in a wheelchair with my head drooped, as I couldn't hold it up. The next step was a catheter, a bed pan, and IV nutrition.

Fortunately, thanks to Dr. Kaufman and this board, I'm actually recovering. I can't believe this. I'm in shock that I'm improving.

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself. I really don't want to inspire sadness in anyone with this post. I want to inspire hope.

The alternative to posting about getting better is to leave the board completely, particularly if I become all the way well (which is still a long road ahead). I don't want to do that. If people who become well disappear, then people on this board won't have the chance to see the stories of people who become well.

What I can do is share the four things that are working for me.
1. Seeing a world class expert.
2. Taking antivirals and following all the additional recommendations of this expert.
3. Resting way more than I want to.
4. Reading peer-reviewed academic journal articles about this illness and about supplementation, and then taking those supplements that are supported by high quality research.

Of course, the above strategies will not work for everyone and are not possible for everyone. But for anyone who can do them and has not yet tried, please do so.

That's all for now. I'll be back, hopefully with more good news.

 

[Sushi]

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery.

I feel delighted for you and hopeful for myself reading your post. Thanks so much for the update. The hard thing is that what works for one may not work for another but if we keep trying, especially with the help of an expert doctor, we are likely to find some things that work for us personally.


Sushi

 

[RUkiddingME]

Time for an update! Thanks @SDSue for the reminder.

Right now, I'm smiling as I write this. I've improved a lot. I've been having coffee with friends again on a regular basis.

I can now leave the house for 4.5 hours. I went out to Black Angus restaurant with family on New Year's Eve. I lasted for their entire 5 hour visit without fatigue. I sat up, talked, laughed, and joked at the restaurant like an "almost healthy" person. I did not need a wheelchair. I also had NO PEM the next day.

My most recent visit with Dr. Kaufman was December 15th. He said to me, "You are making a remarkably fast recovery. This is not typical." I am so thankful to that man...beyond words. If I had a healthy body and he needed a kidney from me, I'd give him one.

Granted, I'm not fully well by any stretch. I didn't sleep one night last week due to insomnia, and I had to spend the majority of the next two days in bed, feeling like absolute hell, as though I had regressed months in my illness. The "former Jeff" could handle sleepless nights like a pro. But after 3 days, I fully bounced back to my "new, much-less-sick normal."

I still have to watch my energy levels daily. Brain fog is ever-present, but it is WAY better. I can read and do web design again, albeit not as quickly and with rest breaks.

There's still no way I could return to grad school at this point, not even half time, or even handle a part time desk job. Five hours of activity sitting up is my new, absolute limit. I am very careful to not go out and push myself to my limit everyday. I thank @SOC for driving home this point in her posts about her and her daughter's recoveries. She gave remarkably helpful advice that has served me well. I force myself to rest way more than I want to and am fortunate to be able to do this. I've learned to say to myself and to friends "let's do this another time," without feeling extremely angry at my own limitations.

Without this board, I never would have known to go see Dr. Kaufman, and I never would have gone on antivirals or learned to rest appropriately. I was almost a vegetable before seeing him. I couldn't feed myself, my mother had to make me protein shakes with olive oil that I could drink through a straw, as lifting a fork and chewing were too much. There were times when I couldn't speak and had to communicate with a pen and paper. When I had to go to the doctor, I was in a wheelchair with my head drooped, as I couldn't hold it up. The next step was a catheter, a bed pan, and IV nutrition.

Fortunately, thanks to Dr. Kaufman and this board, I'm actually recovering. I can't believe this. I'm in shock that I'm improving.

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself, and perhaps bitter as well. I really don't want to inspire sadness in anyone with this post. I want to inspire hope, but I know that this post can't do that for everyone, as many people are extremely ill for years and have tried everything they can.

The alternative to posting about my success is to leave the board completely, particularly if I become all the way well (which is still a long road ahead). I don't want to do that. If the people who become well disappear, then new sick people who come to the board won't have the chance to see positive outcomes.

What I can do is share the four things that are working for me.
1. Seeing a world class expert.
2. Taking antivirals and following all the additional recommendations of this expert.
3. Resting way more than I want to.
4. Reading peer-reviewed academic journal articles about this illness and about supplementation, and then taking those supplements that are supported by high quality research.

Of course, the above strategies will not work for everyone and are not possible for everyone. But for anyone who can do them and has not yet tried, please do so.

That's all for now. I'll be back, hopefully with more good news.

So happy for you Jeff!! It's so refreshing to hear stories like this!! I to am very grateful to be an OMI patient and improving on anti-virals ))

 

[Hanna]

WOW!!!
Thanks for posting Jeff

 

[Sidereal]

Awesome news, Jeff! I hope you continue to post.

 

[SDSue]

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself, and perhaps bitter as well. I really don't want to inspire sadness in anyone with this post. I want to inspire hope, but I know that this post can't do that for everyone, as many people are extremely ill for years and have tried everything they can.

The alternative to posting about my success is to leave the board completely, particularly if I become all the way well (which is still a long road ahead). I don't want to do that. If the people who become well disappear, then new sick people who come to the board won't have the chance to see the stories of people who become well.

Thanks so much for sharing your progress! I don't feel bitter or resentful when I read of others recoveries - I feel hopeful…. and hope is hard to come by some days.

I am on a similar treatment plan of an antiviral and immunomodulator, and just recently began propranolol which has made a big difference in my POTS and my overall sense of well-being. At my next trip to the INIM, I think I'll order up the "Rapid Jeff Recovery" plan!

Please do keep us posted on further gains in health. In fact, maybe we should fit you with a helmet-cam so we can share your adventures in the real world while awaiting our own miracles!

 

[Little Bluestem]

He said to me, "You are making a remarkably fast recovery. This is not typical."

ME patients are never typical.

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself. I really don't want to inspire sadness in anyone with this post. I want to inspire hope.

I think most of us are relieved when we see someone getting better and hopeful that we will eventually get there too.

 

[Gingergrrl]

Hi @jeff_w

I've been wanting to reply to this thread and didn't get a chance until now. I am so happy for your recovery progress and you have always given me a lot of hope. Never feel bad or guilty for getting better. Never.

I can now leave the house for 4.5 hours. I went out to Black Angus restaurant with family on New Year's Eve. I lasted for their entire 5 hour visit without fatigue. I sat up, talked, laughed, and joked at the restaurant like an "almost healthy" person. I did not need a wheelchair. I also had NO PEM the next day.

That is awesome and I know how far you have come from using a wheelchair and having daily IV saline.

My most recent visit with Dr. Kaufman was December 15th. He said to me, "You are making a remarkably fast recovery. This is not typical." I am so thankful for that man...beyond words. If I had a healthy body and he needed a kidney from me, I'd give him one.

I last saw him on 12/23 so we almost ran into each other! I am not doing nearly as well as you but certainly to no fault of Dr. K who I agree with you is truly wonderful.

I've been thinking about why my recovery has been slower and different than yours and wanted to see what you thought of my ideas. (I know you are not a doctor but just curious what you think as a fellow patient since we both had mono/EBV as a main trigger.)

~ My first thought is that you got ill in your early 20's and me in my early 40's and it is just harder to recover from severe mono/EBV when you get it later in life.

~ My second thought is that I tried Famvir and you tried Valcyte (and this was by my own choice b/c I was afraid of potential side effects from Valcyte and I did not have other infections like HHV-6 or CMV.) But now I wonder if the Valcyte helped you by the anti-microglial effects in addition to anti-viral which I did not get with Famvir? I am still on Famvir but soon reaching the six month point and not sure what the new plan will be.

~ My third thought is that you were greatly helped by the IV saline which for whatever reason, my body was not able to tolerate. I had that weird fluid overload reaction with flash pulmonary edema from one liter of saline which could have killed me. I wonder if I could have tolerated the saline better, if it would have helped me long term? I think you also tolerated the methylation supplements (which I did not) and wondering how these made a difference?

~ My fourth thought is that you had high titers of EBV by PCR (which I did not have.) So in some ways you still had active mono itself when you saw Dr. K so you were immensely ill in a way that I was not (b/c I was negative on EBV PCR test- but positive on all other EBV tests.) So I think I had a re-activation of EBV which has caused me all kinds of autonomic damage but in some ways you still had the actual mono itself which it sounds like is now cleared.

Granted, I'm not fully well by any stretch. I didn't sleep one night last week due to insomnia, and I had to spend the majority of the next two days in bed, feeling like absolute hell, as though I had regressed months in my illness. The former "pre-illness Jeff" could handle sleepless nights like a pro. But after 3 days, I fully bounced back to my new, "much-less-sick" normal.

Please don't try to push it and your recovery is still very new and fragile. You should still be resting every day (which I always feel hypocritical saying to others b/c it is so hard for me to practice myself.)

There's still no way I could return to grad school at this point, not even half time, or even handle a part time desk job. Five hours of activity sitting up is my new, absolute limit. I am very careful to not go out and push myself to my limit everyday.

That is a wise decision and when I was very ill, I rushed back to work twice because I felt so pressured to do so and I really regret that now.

Without this board, I never would have known to go see Dr. Kaufman, and I never would have gone on antivirals or learned to rest appropriately. I was almost a vegetable before seeing him. I couldn't feed myself, my mother had to make me protein shakes with olive oil that I could drink through a straw, as lifting a fork and chewing were too much. There were times when I couldn't speak and had to communicate with a pen and paper. When I had to go to the doctor, I was in a wheelchair with my head drooped, as I couldn't hold it up. The next step was a catheter, a bed pan, and IV nutrition.

Your recovery is remarkable and gives me chills when I read this.

I don't want this post to make anyone feel sad, but I realize it might. If I were still extraordinarily ill, as I was just a few months ago, I would feel mixed emotions reading about someone else's fast recovery. I'd feel happy for them, but even sadder for myself. I really don't want to inspire sadness in anyone with this post. I want to inspire hope.

It doesn't make me sad b/c I know where you have been and how hard you worked. It has also made me think and wonder if there are things that I can do differently although I know each of our bodies are different and recovery is so unique and individual for each person.

The alternative to posting about getting better is to leave the board completely, particularly if I become all the way well (which is still a long road ahead). I don't want to do that. If people who become well disappear, then people on this board won't have the chance to see the stories of people who become well.

You can also use this as an opportunity to help with advocacy and fundraising for OMF and the End ME/CFS Project. I have done a little bit but if I ever become well again (or even a little bit better) I will be using my skills as a social worker to help others (and myself!) with ME/CFS worldwide.

I'll be back, hopefully with more good news.

I look forward to the updates and if you do leave PR, let's please exchange e-mails so I can continue to hear how you are doing or how we can work to help OMF and future ME/CFS research.