My Experience With Dr. Kaufman at the Open Medicine Institute

[Folk]

What about Ampligen, anyone know if they use it?

 

[NK17]

What about Ampligen, anyone know if they use it?

Excellent question, to which I will try to get an answer soon while having a follow up visit at OMI.

 

[charlie1]

What is SIBO ?

?

 

[Folk]

?

Small intestine bacterail overgrowth

When there too much bacteria in the wrong place.
You treat it with antibiotics.

 

[jeff_w]

UPDATE
​

Time for another update! I saw Dr. Kaufman two days ago.

But first, a brief detour: I've made a dietary change that appears to have changed the course of my illness for the better. I am now eating a ketogenic diet. Dr. Kaufman is encouraging me to continue with this diet. This means eating fewer than 20 grams of carbs per day (I shoot for as close to zero carbs as possible). 65% of my calories come from fat, 30% come from protein, and 5% come from carbs. On this diet, eating a lot of fat is critical. This sounds extreme and even a bit "fringe," but there is ample research on the safety of this diet. Interestingly, two side effects of the diet are that it lowers the risk of heart disease and leads to weight loss. Most people would assume the opposite, based on the high fat content.

This ketogenic diet is effective for neurological disorders in general, and research indicates that it benefits Multiple Sclerosis (which has many similarities to our illness). It should also be noted that the human body is capable of functioning perfectly without carbohydrates; they are a non-necessary nutrient.

I won't go into more detail here about the mechanism behind the ketogenic diet (which is fascinating!), unless people want me to. I'll just add that it was rough transitioning onto this diet. I felt much worse than usual for a week. But once that cleared, I began feeling better than I've felt in a long time. This (relatively) good health has been going on for the past 5 days now. I'll post a few research article links about the diet, and then I'll get back to talking about my visit with Dr. Kaufman.

Ketogenic Diet and Multiple Sclerosis

Ketogenic Diet and Diverse Neurological Disorders

Prior to starting this diet, my health had peaks and valleys. Sometimes I'd feel relatively well and was able to work on my dissertation and a web design project, while other times I was incapable of doing anything requiring thought. For the sake of my health, I had to back out of a web design project that I was passionate about. It was either that or my dissertation, and my dissertation is the bigger priority, unfortunately.

Anyway, back to the appointment!

So, I arrived at the Open Medicine Institute and had a nice surprise. I saw a woman outside the building, coming up the walkway to the door. I held the door open for her, not yet knowing who she was. She turned out to be the lovely @NK17 . She recognized me from my picture here on PR. Small world!

My appointment started out with a SIBO (Small Intestinal Bacterial Overgrowth) test, which lasted 2 hours. I was negative for SIBO! That was a relief. After the SIBO test with Lorie (friendly nurse), I sat down with Dr. Kaufman to talk.

Dr. Kaufman noted that I appeared to be doing quite well and asked me to describe things in detail. I told him how the diet is helping me. We discussed my orthostatic intolerance, which is still present to some degree, though it isn't bad. We discussed my energy levels, which have been consistently better for the past several days (which I attributed to the keto diet and Dr. Kaufman acknowledged was very possible). We also discussed possibly trying Rituxan in the future. Dr. Kaufman said that I am making fast and steady progress on Valcyte and Famvir, so Rituxan might not be necessary down the line if this regimen produces a remission. Overall, it was a good visit. Dr. Kaufman is such a good listener and is very compassionate.

What really stood out about the visit was how well I handled the travelling and the hotel. It was so easy this time compared to previous trips to the OMI.

That's about it! I'm so thankful for how things are going right now.

 

[NK17]

I'm so deeply happy for your improvements@jeff_w and I'd like to thank you for:

1. Getting up to open the door for me at OMI

2. For the compliment which, by the way, is exactly what I think about you, even before meeting you
and

3. For the precious informations and updates.

I've been myself on a ketogenic diet for several months now, although mine by now is probably less strict than your.

Onward to a clear remission is my greatest hope for all of us.

Keep on being such a great kid!

 

[Gingergrrl]

So, I arrived at the Open Medicine Institute and had a nice surprise. I saw a woman outside the building, coming up the walkway to the door. I held the door open for her, not yet knowing who she was. She turned out to be the lovely @NK17 . She recognized me from my picture here on PR. Small world!

@jeff_w and @NK17 I wasn't sure if you guys were going to post about this but since you did, I have to add my tiny part of the story to make it complete . I knew for weeks that NK17 (who I agree is lovely ) was going up to OMI that day to see Dr. K. She texted me a beautiful picture of some flowers from outside of OMI and then a few minutes later, she texted me that she had just met Jeff!!!

She said that she recognized you immediately from your PR photo as you said. I texted her back that I couldn't believe that three of my favorite people, (Her, Jeff and Dr. K) were all at the same place without me!!! Then shortly after, Jeff, sent me an e-mail re: a different topic but said that he had just bumped into NK17 at OMI and I said, "I already know LOL." My husband said that next time we should all coordinate and have a party (PWC style of course.)

What really stood out about the visit was how well I handled the travelling and the hotel. It was so easy this time compared to previous trips to the OMI.

Jeff, I am so happy to hear that and my last trip up there in Dec was a disaster for me on the drive home b/c I had given 20 vials of blood and then we immediately attempted to drive home and I was too weak and when we stopped at a gas station to use the restroom without the wheelchair, I got severe shortness of breath and chest pain. We learned our lesson that we need to stay overnight at a hotel after the appt. I will be going back some time around June or July. If I reach a point that I can travel up there and describe it as "easy", I will know that I have really improved. I remain hopeful that day will come just not sure when.

I'm so thankful for how things are going right now.

You deserve it and that is such great news .

Onward to a clear remission is my greatest hope for all of us.

@NK17 I couldn't agree more and that is my hope for all of us too. I am so glad you made it up there and back safely.

 

[Folk]

Hey what amazing news for everyone

I've been kind of following a ketogenic diet. But I still eat more then 20g of carbs a day I guess...
But I have problems with all fruits and most veggies so I think that will lead me to some nutrients defficiency.

Also I don't really eat a lot of fat, a part from eggs and a lot of nuts...

Can you post a small example of a what daily meal would be @jeff_w ?

I have no problems following any kind of diet, I would easily drop anything and easily incorporate anything in my diet if I knew that it would be good for my health. If only this subject would be more conclusive and there was a common acceptance of what a diet should be...

 

[Billt]

Jeff , so glad to hear you are doing better. Thanks for updating us, I can't wait to take my son in May ! Maybe I will run into one our fellow PR"S.. Thanks for sharing and giving us hope .. Bill

 

[jeff_w]

@Gingergrrl and @NK17 - Yes! If we're all at the OMI at the same time, we'll party. We'll turn the waiting room into party city and sit with our feet elevated, sipping on electrolyte drinks out of wine glasses.

Gingergrrl - I hope your next journey to the OMI will be much easier. It sounds like you've made definite progress on Valcyte!

 

[Sushi]

The first 5 or so days were pure hell though, which is true for even healthy people. I vomited and had a horrible headache, and my body felt like lead. Don't let that scare you off, just hang in there, and the "keto flu" will pass.

Couldn't you transition slowly into a diet like this to avoid these tough side-effects?

 

[jeff_w]

Jeff , so glad to hear you are doing better. Thanks for updating us, I can't wait to take my son in May ! Maybe I will run into one our fellow PR"S.. Thanks for sharing and giving us hope .. Bill

@Billt -

You're very welcome! I'm happy to share.

I want to make sure your son knows what to expect, so here's a bit more background:

When I saw Dr. Kaufman for the first time, I was hoping to get well fast. You might already know this: Progress for most people is slow at first, and that was true for me as well. My first visit to the OMI was last August, and I started treatment with antivirals in early September. I felt worse at first, due to the antivirals. It wasn't until December, which was over 3 months after starting treatment, that I began feeling somewhat better. I've had steady improvement since then. Dr. Kaufman told me that I'm improving more quickly than average, and that for some people it can take 6 months before they see improvement.

Geez, I hope I'm not being too much of a downer. You probably already knew all that anyway, but I just wanted to share it in case improvement is slow for your son at first, so that he doesn't lose hope. I had to keep reminding myself to hang in there during the first few months of treatment, which were pretty difficult. Once I started to improve, life became much brighter.

Best of luck to your son!

 

[jeff_w]

Couldn't you transition slowly into a diet like this to avoid these tough side-effects?

Hi @Sushi

It's recommended to transition all at once. Otherwise, you end up in a state of limbo where your body keeps going in and out of ketosis, which prolongs the difficult adaptation phase. It you transition slowly, your side effects could last a lot longer.

 

[jeff_w]

Hey what amazing news for everyone

I've been kind of following a ketogenic diet. But I still eat more then 20g of carbs a day I guess...

Also I don't really eat a lot of fat, a part from eggs and a lot of nuts...

Hi @Folk -

The diet has been amazing for energy and brain fog! If you want to do true keto, you have to eat a lot of fat so that your body's fuel is ketones rather than glucose. At least 65% of all calories should be from fat. Otherwise it's not keto, it's just "low carb." Low carb is okay, but keto is what benefits your brain and immune system.

Here's a link to really helpful information I've found on the diet (easy-to-read, too!): Keto Diet

Can you post a small example of a what daily meal would be @jeff_w ?

Breakfast: 3 deviled eggs - made with lots of mayonnaise to add fat
Snack: 1 Tablespoon all natural peanut butter
Lunch: I'm usually not hungry at lunchtime; I eat a huge dinner
Dinner: Baked chicken slathered with creamy Alfredo sauce (Alfredo sauce recipe)
Randomly throughout the day, I'll eat tablespoons of extra virgin olive oil and coconut oil, too.

I have to be careful to not eat more than 30% of calories from protein. Eating too much protein (or carbs) kicks your body out of ketosis, and you lose the neurological and immune system benefits.

I have no problems following any kind of diet, I would easily drop anything and easily incorporate anything in my diet if I knew that it would be good for my health. If only this subject would be more conclusive and there was a common acceptance of what a diet should be...

Same here. I've had to give up ice cream, pasta, bread, and fruit for this diet... and I love those foods! But it's more than worth it; I feel so much better eating keto. The first 5 or so days were pure hell though, which is true even for healthy people. I vomited and had a horrible headache, and my body felt like lead. Don't let that scare you off, just hang in there, and the "keto flu" will pass. Drinking extra electrolytes helped make it easier.

Good luck!

 

[Billt]

@Billt -

You're very welcome! I'm happy to share.

I want to make sure your son knows what to expect, so here's a bit more background:

When I saw Dr. Kaufman for the first time, I was hoping to get well fast. You might already know this: Progress for most people is slow at first, and that was true for me as well. My first visit to the OMI was last August, and I started treatment with antivirals in early September. I felt worse at first, due to the antivirals. It wasn't until December, which was over 3 months after starting treatment, that I began feeling somewhat better. I've had steady improvement since then. Dr. Kaufman told me that I'm improving more quickly than average, and that for some people it can take 6 months before they see improvement.

Geez, I hope I'm not being too much of a downer. You probably already knew all that anyway, but I just wanted to share it in case improvement is slow for your son at first, so that he doesn't lose hope. I had to keep reminding myself to hang in there during the first few months of treatment, which were pretty difficult. Once I started to improve, life became much brighter.

Best of luck to your son!

Jeff , thanks for the time line . It seems like he has been sick for so long now ( 1 year ) but I know a lot of you have been sick much longer. Although it would be great for a super fast recovery, we will take slow and steady !!! We just need to start going in the right direction with a Dr that is willing to listen and understand his sickness. So many Drs here have just given up without giving us any hope. He is on antivirals, but low dose because they won't give him anything higher. I will post on our adventure and how we do. And I'll take all the info you ever have, don't have to worry about being a downer. Would rather know what to expect. Be well.. Bill

 

[SOC]

Dinner: Baked chicken slathered with creamy Alfredo sauce (Alfredo sauce recipe)
...
Same here. I've had to give up ice cream, pasta, bread, and fruit for this diet... and I love those foods! But it's more than worth it; I feel so much better eating keto.

You had to give up ice cream, but not other dairy products? Is it the sugar that's the problem?

I can't imagine trying a keto diet since I can't do any dairy... or peanut butter. It makes too many limitations in the available fats. My doctor wants me to try a 4-day rotation diet. Maybe after months on that diet I'll be less sensitive to dairy (wishful thinking) and could consider trying a keto diet.

 

[jeff_w]

Hi @SOC -

Carbs are the problem. The Alfredo sauce above has a lot of cheese, which is extremely low carb, and some cream, which is much lower carb than milk. On the keto diet, dairy is okay as long as it's very low carb dairy.

You could still do keto without dairy or nut butters, as long as you made sure to get enough fats through meat, olive oil, coconut oil, etc. But yes, as you said, it would make for a very restricted diet. It would still be worth it, in my case, considering the amazing impact keto has had on my health. But, keto may impact people differently.

 

[RUkiddingME]

@Gingergrrl and @NK17 - Yes! If we're all at the OMI at the same time, we'll party. We'll turn the waiting room into party city and sit with our feet elevated, sipping on electrolyte drinks out of wine glasses.

Gingergrrl - I hope your next journey to the OMI will be much easier. It sounds like you've made definite progress on Valcyte!

I hope to fly up for a follow up in June. I will let you all know in case I can meet some of you lovely people!

 

[RUkiddingME]

UPDATE
​

Time for another update! I saw Dr. Kaufman two days ago.

But first, a brief detour: I've made a dietary change that appears to have changed the course of my illness for the better. I am now eating a ketogenic diet. Dr. Kaufman is encouraging me to continue with this diet. This means eating fewer than 20 grams of carbs per day (I shoot for as close to zero carbs as possible). 65% of my calories come from fat, 30% come from protein, and 5% come from carbs. On this diet, eating a lot of fat is critical. This sounds extreme and even a bit "fringe," but there is ample research on the safety of this diet. Interestingly, two side effects of the diet are that it lowers the risk of heart disease and leads to weight loss. Most people would assume the opposite, based on the high fat content.

This ketogenic diet is effective for neurological disorders in general, and research indicates that it benefits Multiple Sclerosis (which has many similarities to our illness). It should also be noted that the human body is capable of functioning perfectly without carbohydrates; they are a non-necessary nutrient.

I won't go into more detail here about the mechanism behind the ketogenic diet (which is fascinating!), unless people want me to. I'll just add that it was rough transitioning onto this diet. I felt much worse than usual for a week. But once that cleared, I began feeling better than I've felt in a long time. This (relatively) good health has been going on for the past 5 days now. I'll post a few research article links about the diet, and then I'll get back to talking about my visit with Dr. Kaufman.

Ketogenic Diet and Multiple Sclerosis

Ketogenic Diet and Diverse Neurological Disorders

Prior to starting this diet, my health had peaks and valleys. Sometimes I'd feel relatively well and was able to work on my dissertation and a web design project, while other times I was incapable of doing anything requiring thought. For the sake of my health, I had to back out of a web design project that I was passionate about. It was either that or my dissertation, and my dissertation is the bigger priority, unfortunately.

Anyway, back to the appointment!

So, I arrived at the Open Medicine Institute and had a nice surprise. I saw a woman outside the building, coming up the walkway to the door. I held the door open for her, not yet knowing who she was. She turned out to be the lovely @NK17 . She recognized me from my picture here on PR. Small world!

My appointment started out with a SIBO (Small Intestinal Bacterial Overgrowth) test, which lasted 2 hours. I was negative for SIBO! That was a relief. After the SIBO test with Lorie (friendly nurse), I sat down with Dr. Kaufman to talk.

Dr. Kaufman noted that I appeared to be doing quite well and asked me to describe things in detail. I told him how the diet is helping me. We discussed my orthostatic intolerance, which is still present to some degree, though it isn't bad. We discussed my energy levels, which have been consistently better for the past several days (which I attributed to the keto diet and Dr. Kaufman acknowledged was very possible). We also discussed possibly trying Rituxan in the future. Dr. Kaufman said that I am making fast and steady progress on Valcyte and Famvir, so Rituxan might not be necessary down the line if this regimen produces a remission. Overall, it was a good visit. Dr. Kaufman is such a good listener and is very compassionate.

What really stood out about the visit was how well I handled the travelling and the hotel. It was so easy this time compared to previous trips to the OMI.

That's about it! I'm so thankful for how things are going right now.

So glad things are going so well for you. It's a fantastic clinic! I am also on Valcyte and facing a rather upsetting relapse at the moment. I would be curious to know what dose of Famvir you are on as I was on both Valcyte and Famvir last year and I think I might ask Dr. Kogelnik to add the Famvir once again. Thanks for the update

 

[jeff_w]

So glad things are going so well for you. It's a fantastic clinic! I am also on Valcyte and facing a rather upsetting relapse at the moment. I would be curious to know what dose of Famvir you are on as I was on both Valcyte and Famvir last year and I think I might ask Dr. Kogelnik to add the Famvir once again. Thanks for the update

Hi @RUkiddingME -

I'm on 4 Famvir pills per day, so 2,000mg. I do much better on Valcyte and Famvir together, rather than just Valcyte.

Something else that has really been helping me is a ketogenic diet. I used to believe that, because this illness is so serious, something like diet would only have a tiny impact. I was wrong.

If you're interested in trying the diet, there's a lot of information above, in this post.

I'm sorry to hear about your current relapse. Hopefully the Famvir will help, and you might want to look into the keto diet, if you're interested. Good luck with everything.