My Experience With Dr. Kaufman at the Open Medicine Institute

[Gingergrrl]

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 That would be great and the party is getting bigger... I am sorry about your relapse and I have had a major problem from a tiny dose of Valcyte recently too. Will PM you later.

ETA: I am actually stopping Famvir as I have taken it for eight months with no benefit (but do not regret trying it.)

 

[WoolPippi]

I've read through this whole thread. What a wonderful thread to read

my health gain has been like yours, but on reverse sources. First keto then hormones and vit. d. Never anti-virals or saline drip because I never visited a specialist like dr.K. This has made my initial recovery a very slow one but spthe last year as remarkable as yours, from 10% can't lift my head to 85%.

I'm an engineer who approached this black box of ME with scientific theories and trial and error untill something stuck. Besides digestion, blood pressure, cell membrane, minerals, adrenals and hormones I found the stress functions of the body to be important too.

Recently dropped to 65% in health due to life stress event. Hope to regain.

The ketogenic diet is wonderful! I love how it normalizes brain chemistry too, as indicated by its medical use for epileptism and my own anecdotal experience. Have you read Homo Optimal by dr. kwasniewski? He's a nutter but spot on with discovering keto-diet for his patients. Strange to rhyme him with scientific results.

Speaking of science: you might enjoy the blog called Hyperlipid (although the url reads different, something like "high-fat-...."). It's by a vet from the UK who is keto convinced and scrutinizes medical research for fun. He exposes all kinds of faulty premises in research trials that renders their conclusions useless. Like lab mice on "high fat diet" that still get the standard mouse chow made out of corn syrup.
The posts are in dept but the comments are easier to read.

Dr Bernstein with his book "The Bernstein Connection" discovered blood sugar spikes through protein and also volume of food eaten. He quantifies them too. He's a type 1 Diabetic who doens't need insuline anymore to cover his meals, only the base line. He's old! He survived, by wits and by being an engineer turned doctor scientist.

Anything bigger than your fist triggers insuline, even if it's just leaves of lettuce. Very interesting read, made me check my blood sugar and it's a way more sensitive system then I assumed. (Insuline is a strong poison, employed to counter that bigger poison called raised blood sugar. No wonder keto is such bliss for health)

I realized I've abandonned keto the past few months. Coinciding with life stress and drop in health. Tried to start up last week and got the head aches and brain fog and took carbs again which alleviated. Will push through. Forgot about the "keto flu". Thanks for mentioning.

Last two things: 1. your fat of choice seems to be not fully saturated ones?

2. Icecream! I make my own ice cream, based on custard. Full fat cream with egg yokes and just a little bit of milk, vanilla, pepper and salt and more cream. That's all. That's keto-cream I'd think
Flavouring comes from the vanilla or a few drops of mint oil.

 

[jeff_w]

@WoolPippi -

Thanks for the reading recommendations and the "keto ice cream" recipe.

As for my choices in fat: I eat a lot of coconut oil, which is highly saturated. It's not my favorite fat, though. Olive oil is.

Glad to hear your health returned to 85% for some time!

 

[Gingergrrl]

@jeff_w just booked my appt for end of June at OMI and will be doing the SIBO test while there. Will NOT make the mistake of trying to come back home the same day like last time b/c I always end up giving like 20 vials of blood and am very weak. Will tell you more later. When do you go for next appt?

 

[jeff_w]

@jeff_w just booked my appt for end of June at OMI and will be doing the SIBO test while there. Will NOT make the mistake of trying to come back home the same day like last time b/c I always end up giving like 20 vials of blood and am very weak. Will tell you more later. When do you go for next appt?

Hi @Gingergrrl -

I don't have my next appt set up yet. I'm trying to save money, so my next appt will probably be by phone, which is $100 less than in-person. If I decide to do in-person for some reason, I will let you know!

Glad to hear you'll be taking it slow and staying an extra day.

 

[Folk]

Dr. Kaufman is getting popular.
Next appt avaiable for June 30th!

I really suspects @jeff_w could start charging for some %.

Anyway, Appt confirmed.


I wonder one thing: Dr. Kaufman used to treat HIV and Lyme right? Are we talking Late Stage Lyme?
How's he working with you guys about Lyme now??

 

[RUkiddingME]

It happened like this. I was 100% bedridden last July, except for trips to the restroom, and sometimes I needed to lean on someone's shoulder or use a walker to get there. I was trying to get out of bed to make my way to the restroom, but I couldn't get out of bed. I called for my dad. 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. The first time was combined with acute chest pain, and I was rushed to the emergency room.

@Jeff. Wow this is interesting as I never heard of anyone else who experienced this. I have had this a few times and the first time 5 years ago I was also brought to the emergency room. It feels like what I assume one must feel on a date rape drug. You are awake and can hear everything but can't phisically move your body. It's a horrible feeling. They couldn't find anything wrong at the hospital but after a bag of saline my body started to respond a bit. The other episodes I stayed home and just waited it out. The first one lasted about 8 hours and the other ones were shorter. I called them my "comas" . It's a horrible feeling and thankfully I have not been alone when these events have occurred. I have high EBV and HHV6 titers. I am just waiting for a call back from OMI with. June follow up. If Dr. Kogelnik can't see me there is a possibility that I might see Dr. Kaufman instead. I will also try to order the Jeff quick fix package lol. Relapsed on my second round of Valcyte at the moment. Thank you so much for posting your progress!! I also felt guilty when posting my progress on my Valcyte blog but also felt that everyone should hear about the treatments we try. Keep on getting better, we are all cheering for you!!

 

[RUkiddingME]

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.



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.

I just replied to Jeff's post about the paralysis and then saw your post. I have had the exact same thing! I wonder what causes it? Very interesting

 

[Gingergrrl]

@RUkiddingME

I am just waiting for a call back from OMI with. June follow up. If Dr. Kogelnik can't see me there is a possibility that I might see Dr. Kaufman instead.

Let me know when you find out what day in June you will be there (and can PM me if don't want to post this info!)

I will also try to order the Jeff quick fix package lol.

I want to order this, too!

Relapsed on my second round of Valcyte at the moment.

I am so sorry to hear this and was just thinking about you yesterday and wondering how the Valcyte was going. I did not tolerate Valcyte even at tiny dose. It gave me some great improvements but it also gave me a horrible side effect, akathisia, so I had to stop. It is still possible that I may try it again in the future but not right now.

I also felt guilty when posting my progress on my Valcyte blog but also felt that everyone should hear about the treatments we try. Keep on getting better, we are all cheering for you!!

You shouldn't feel guilty (RUkiddingME or Jeff) and when I see people getting better, it inspires me that it is possible. My problem seems to be that I can get some improvements but then the side effects of the meds (especially rare side effects) outweigh the good so I have to stop. I have been having some improvement lately on another med but it is inconsistent and I am afraid to jinx myself if I post about it... b/c as soon as I do, it stops working for one reason or another and it is only working inconsistently as it is right now!

 

[jess100]

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.

Jeff thanks so much for this update (I just found it a month late) But I'm very happy you are doing better. I had my appointment at OMI and want to thank you for recommending it to us. I do not yet have blood test results but tested positive for SIBO.
Do you have a specific diagnosis Jeff? You probably posted this somewhere but I won't stumble across it for months.
So now that it's a month after your post would you say you are continuing to improve with the antibiotics and diet change?

Jess

 

[RUkiddingME]

Hey guys, I am getting curious about this SIBO test they re doing at OMI. Do they do it by intestinal culture or by breath test. Also, what is the recommended treatment antibiotics or probiotics. Does being positive for SIBO make us sicker, more fatigued? I have a feeling it's an expensive test which would not be covered for me but now I am really curious about it especially with a potential follow up at OMI in June. Thanks in advance for any info

 

[Gingergrrl]

Hey guys, I am getting curious about this SIBO test they re doing at OMI. Do they do it by intestinal culture or by breath test. Also, what is the recommended treatment antibiotics or probiotics. Does being positive for SIBO make us sicker, more fatigued? I have a feeling it's an expensive test which would not be covered for me but now I am really curious about it especially with a potential follow up at OMI in June. Thanks in advance for any info

@RUkiddingME I am doing the SIBO test at OMI in June and it is a breath test (not an intestinal culture) and they will e-mail you the exact instructions. I am not sure what the proposed treatment would be. They are checking for me now if the solution that you drink for the test contains any food dyes b/c of my recent allergic reactions but I suspect this is not an issue for anyone else!

I am doing the test b/c I am having histamine issues lately and if you have SIBO or leaky gut this can make these issues as well as general inflammation worse. I actually suspect that I do not have SIBO b/c I was tested (somewhere else) a little over a year ago and was negative but I am so much sicker now overall than I was at that time that we are curious to check it again so it can be definitively ruled out. I believe there are alternative treatments to antibiotics and if I do test positive, I will find out all the options (as antibiotics would be the absolute last resort for me on earth based on my history.)

I am taking a really good probiotic now called "Prescript Assist" that I learned about in the Resistant Starch thread (but don't want to get too off-track again in Jeff's thread!)

 

[Folk]

Dr. Kaufman said via e-mail even though I tested negative for SIBO he is pretty sure I have it. And I understood he would treat me for it anyway... so... perhaps there's some false negative factor there.

 

[jeff_w]

Jeff thanks so much for this update (I just found it a month late) But I'm very happy you are doing better. I had my appointment at OMI and want to thank you for recommending it to us. I do not yet have blood test results but tested positive for SIBO.
Do you have a specific diagnosis Jeff? You probably posted this somewhere but I won't stumble across it for months.
So now that it's a month after your post would you say you are continuing to improve with the antibiotics and diet change?

Jess

Hello @jess100 -

Glad to hear you went to the OMI!

My specific diagnoses are: ME/CFS, Disturbances of Sulphur-Bearing Amino Acid Metabolism (aka 2 MTHFR mutations), and Orthostatic Intolerance. I no longer have SIBO.

I'm continuing to improve on antivirals, diet, and other drugs. The improvement feels very slow to me, but Dr. Kaufman told me I'm actually healing very quickly for someone with this illness.

Keep us posted on your progress!

 

[jeff_w]

Does being positive for SIBO make us sicker, more fatigued? I have a feeling it's an expensive test which would not be covered for me but now I am really curious about it especially with a potential follow up at OMI in June. Thanks in advance for any info

SIBO made me feel much sicker. Dr. Kaufman explained that the SIBO bacteria leak into the bloodstream, causing higher levels of sickness. When I got rid of the SIBO, I felt like a layer of thick sickly fog had been lifted. Your mileage may vary, of course.

 

[jess100]

Hello @jess100 -

Glad to hear you went to the OMI!

My specific diagnoses are: ME/CFS, Disturbances of Sulphur-Bearing Amino Acid Metabolism (aka 2 MTHFR mutations), and Orthostatic Intolerance. I no longer have SIBO.

I'm continuing to improve on antivirals, diet, and other drugs. The improvement feels very slow to me, but Dr. Kaufman told me I'm actually healing very quickly for someone with this illness.

Keep us posted on your progress!

Jeff
I'm so glad you're doing better. Very happy to hear that. Keep us posted on your progress
Jess

 

[RUkiddingME]

thanks everyone about the SIBO info. Worth looking I to for sure!

 

[NK17]

Another patient of Dr. Kaufman here. I've seen him a month ago and can confirm the importance of SIBO breath test.

He wants me to get tested again and I'm in the process of setting up an appointment with my old gastroenterologist who had treated me with abx (Xifaxan + Flagyl) back in '12.

Since then I haven't been retested and I agree with Dr. Kaufman on the importance of a 'healthy' functioning GI tract and possible interventions (abx, diet, probiotics, prebiotics) etc.

You really need a bright detective like mind and a multi prong approach in order to have a chance at life again and Dr. Kaufman seems to be the right guy to help you regain some health.

 

[Billt]

Another patient of Dr. Kaufman here. I've seen him a month ago and can confirm the importance of SIBO breath test.

He wants me to get tested again and I'm in the process of setting up an appointment with my old gastroenterologist who had treated me with abx (Xifaxan + Flagyl) back in '12.

Since then I haven't been retested and I agree with Dr. Kaufman on the importance of a 'healthy' functioning GI tract and possible interventions (abx, diet, probiotics, prebiotics) etc.

You really need a bright detective like mind and a multi prong approach in order to have a chance at life again and Dr. Kaufman seems to be the right guy to help you regain some health.

Can't wait till next month to bring my son to him. Hope he will do the SIBO test on him as well. Sounds like he may do this with most. Sure hope he can help us... Ready for him to start feeling a bit better.. Bill

 

[Gingergrrl]

@Billt you have to request the SIBO test in advance and it will not be automatically done. They would order the kit and email you instructions for your son to follow the week and day before Re: dietary and other directions to ensure the results are valid. You can call to request it for your son and I am sure it would not be too late.