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My Experience With Dr. Kaufman at the Open Medicine Institute

DanME

Senior Member
Messages
289
@jeff_w

How was your second appointment? Have you been prescribed antivirals? Did Dr. K offered some other useful treatment or outlook?

Hope you are well :)
 

jeff_w

Senior Member
Messages
558
Time for an update!

My second appointment at the Open Medicine Institute was very informative. Though extensive bloodwork Dr. Kaufman found the following issues:
  • Florid, active Epstein-Barr infection with high viral levels, he said, "I have rarely seen them this high."
  • Natural Killer Cell function at only 15%
  • Compound heterozygous MTHFR genetic mutation
  • B-12 deficiency
  • Elevated homocystine
  • Undetectable vasopressin
He prescribed Valcyte and was able to get my insurance to authorize it. I've been taking it for 2.5 weeks now, and it is making me nauseated and tired. Dr. Kaufman said this is a good sign, since responders to Valcyte often (though not always) have a negative reaction at the beginning. He also prescribed methyl B-12 injections, which I'm taking three times per week along with Methylfolate 7.5mg per day. I will also start taking Desmopressin. All of this is in addition to the Propanolol and Florinef that I have been on since my first visit.

I'll probably continue feeling worse from the Valcyte for some time, maybe even several months. I'll update periodically to track and share my progress. :)
 
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Gingergrrl

Senior Member
Messages
16,171
Hi @jeff_w

We have the same doctor so I was eagerly awaiting your update. My NK functioning was only 5% so I beat you LOL. I have a question though, did you have other active viruses or only EBV? If only EBV, did Dr. K say why he put you on Valcyte vs. another anti-viral like Famvir or Valtrex?
 

Helen

Senior Member
Messages
2,243
Time for an update!

My second appointment at the Open Medicine Institute was very informative. Though extensive bloodwork Dr. Kaufman found the following issues:
  • Florid, active Epstein-Barr infection with some of the highest viral levels he has ever seen
  • Natural Killer Cell function at only 15%
  • Compound heterozygous MTHFR genetic mutation
  • B-12 deficiency
  • Elevated homocystine
He prescribed Valcyte and was able to get my insurance to authorize it. I've been taking it for 2.5 weeks now, and it is making me nauseated and tired. Dr. Kaufman said this is a good sign, since responders to Valcyte often (though not always) have a negative reaction at the beginning. He also prescribed methyl B-12 injections, which I'm taking three times per week along with Methylfolate 7.5mg per day.

I'll probably continue feeling worse from the Valcyte for some time, maybe even several months. I'll update periodically to track and share my progress. :)

Thanks for sharing. It is very interesting to get information from a renowned ME-clinic and I do hope you will get better from these specific treatments . May I ask about the Epstein-Barr lab value; how high it was? Do you have any symptoms according to an Epstein-Barr infection?
 

Iquitos

Senior Member
Messages
513
Location
Colorado
Out of town patients might consider registering at couchsurfers.com

This is an organization where people offer a couch, bed, etc. (sometimes a bedroom) for free, for a short time. It's a worldwide organization and I've hosted someone from Europe and will be hosting an American in November. It's generally about tourism but I think it has great potential for ME patients, too. I checked and see that there are dozens of hosts in and near Mountain View, many originally from all over the world, speaking many languages, etc.
 

NK17

Senior Member
Messages
592
Just catching up with this thread. I'm a patient of Dr. Kogelnik and I'm very happy every time I hear that a new patient of OMI is getting tested, validated and treated.

@jeff_w I wish you all the best with Valcyte, from your ME medical history I get the feeling that you're young and have caught the Beast relatively early. Dr. Kaufman is a wonderful doctor who is not shying away from using some necessary drugs.
Can't wait to learn that you're improving ;).

@Gingergrrl I'm afraid I beat you regarding the NK cells function. My last reading, last month, was 4% ... It has been going down from 17 to 8, then back to 11, down to 5 and now 4%.

I've unfortunately been getting worst, I mean my ME. I'm currently on a short hiatus from Valcyte, due to a vascular issue that is compressing my esophagus, any tablets or pill gets literally stuck for hours!
I'm hoping that while I wait for the liquid form to be dispensed I'm not creating some resistance.

@DanielBR I don't know exactly where you live in Germany and how far you're from northern Italy, but there is a great ME doctor Nicoletta Carlo-Stella in Pavia near Milan. She is an immunologist with a special interest in ME, just google her and you'll see. She is fluent in english and french, not sure about german.
I'm sure you must have already tried to get in at Charité in Berlin with Dr. Carmen Scheibenbogen?

@Iquitos I always think about organizing a long term stay place for ME patients near our doctors clinics, it is of primary importance.
So nice of you to do it. It's something I want to explore more, but in order to do that I need to get better myself.
 
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jeff_w

Senior Member
Messages
558
Hi @jeff_w

We have the same doctor so I was eagerly awaiting your update. My NK functioning was only 5% so I beat you LOL. I have a question though, did you have other active viruses or only EBV? If only EBV, did Dr. K say why he put you on Valcyte vs. another anti-viral like Famvir or Valtrex?

@Gingergrrl - I had only EBV. He didn't say why he chose Valcyte as opposed to Famvir or Valtrex.
 

Seven7

Seven
Messages
3,444
Location
USA
@Gingergrrl - I had only EBV. He didn't say why he chose Valcyte as opposed to Famvir or Valtrex.

I think your treatment plan is amzing and you are in the right track. I have been in the same and have improved from a 3 to a 7.8/8 (I do crash badly back and forth because I over do). Today I would say I am in a 9 easy (I EVEN RUN YESTERDAY!!!). It has taken me about 3 years of treatment.

Also, My only note is because he prescribed all that does not mean to start them all at once. Start each at a time, also increase slowly. Each one of those medications can send you to bed for months and would be a sad thing that u have to give up because u don't know which one is causing the trouble or which is causing which side effect.
Get to know your drus, their side effects, how they affect you when you take too much. How do you react when is too little. Later on when you have to adjust and you will trust me, that will come in handy!
 

jeff_w

Senior Member
Messages
558
Thanks for sharing. It is very interesting to get information from a renowned ME-clinic and I do hope you will get better from these specific treatments . May I ask about the Epstein-Barr lab value; how high it was? Do you have any symptoms according to an Epstein-Barr infection?

@Helen -

He measured 5 different EBV lab values, all of which came out elevated. They were as follows:

1. EBV Early Antigen D AB (IGG): 1.19
2. EBV Nuclear AG (EBNA) AB (IGG): 4.89
3. EBV Viral Capsid AG (VCA) AB (IGG): 4.34
4. EBV Viral Capsid AG (VCA) AB (IGM): 3.88
5. EBV DNA, QN PCR: 683

It was the EBV DNA, QN PCR that made him say, "I have rarely seen it this high in my practice."

To answer your question about symptoms of EBV infection: I have had fevers everyday for months in addition to tender lymph nodes. I also have other symptoms common to ME: Post-exertional malaise, extreme fatigue, POTS, brain fog, etc. When I first became bedridden last June, I was so fatigued that I needed my parents or friends to assist me with getting out of bed in order to shower. A shower would then leave me exhausted for three days afterward. I was also often unable to use a fork/spoon to eat. So, I had to drink protein fortified milkshakes with spoonfuls of olive oil added to them. There were also times, very early on, when I could not speak. I had to use a pen and notepad to communicate.

I've improved so much since then, especially after using daily IV saline plus having Dr. Kaufman treat the POTS. Eating, speaking, showering, etc. are not problems at all anymore. The best day I've had recently was going to a movie, followed by dinner at a restaurant. There were also two days in one week when I was able to go out for coffee with friends. I am still mostly housebound, and I spend much of my time reclining in order to heal faster, but I have made a lot of progress in the past three months.
 
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Gingergrrl

Senior Member
Messages
16,171
@jeff_w

@Gingergrrl - I had only EBV. He didn't say why he chose Valcyte as opposed to Famvir or Valtrex.

Jeff, Thank you and I was just curious re: the Valcyte but your second post, which I quoted below, may explain the reason why and I will respond below with my full answer.

He measured 5 different EBV lab values, all of which came out elevated. They were as follows:

1. EBV Early Antigen D AB (IGG): 1.19
2. EBV Nuclear AG (EBNA) AB (IGG): 4.89
3. EBV Viral Capsid AG (VCA) AB (IGG): 4.34
4. EBV Viral Capsid AG (VCA) AB (IGM): 3.88
5. EBV DNA, QN PCR: 683

It was the EBV DNA, QN PCR that made him say, "I have rarely seen it this high in my practice."

I just pulled out my tests from Dr. K to compare your EBV results to mine and I was positive on the first four EBV tests (with my early antigen and VCA IgG actually higher than yours) but I was negative on the PCR meaning <200. He told me at the time that the PCR is usually negative as EBV re-activation is rarely in the blood and hides out in the the tissues (I am paraphrasing and not a direct quote from him.)

So, I wonder if the fact that your PCR number was so high is why he put you on Valcyte? Also in my case, I was very opposed (and afraid!) of Valcyte before my test results were even back. He said if I was positive for HHV-6 and/or CMV than I would need Valcyte but since I ultimately was only positive for EBV (plus VZV but that seemed minor) he said I really did not need Valcyte and that Famvir or Valtrex would both be good choices for me.

I chose Famvir but I also told him that I did not want to make a mistake and wanted to be certain that he felt Famvir could help me and he said that it could. What I mean is, there is no guarantee that anyone will be in the group that responds to an anti-viral, but he felt in my case given my whole clinical picture, that Famvir was as good for me as Valcyte. I have now been on Famvir for 62 days.

To answer your question about symptoms of EBV infection: I have had fevers everyday for months in addition to tender lympth nodes. I also have other symptoms common to ME: Post-exertional malaise, extreme fatigue, POTS, brain fog, etc. When I first became bedridden last June, I was so fatigued that I needed my parents or friends to assist me with getting out of bed in order to shower. A shower would then leave me exhausted for three days afterward. I was also often unable to use a fork/spoon to eat. So, I had to drink protein fortified milkshakes with spoonfuls of olive oil added to them. There were also times, very early on, when I could not speak. I had to use a pen and notepad to communicate.

Jeff, I am so sorry to hear how ill you were and what you describe is more like when I had actual active mononucleosis in 2012. At present, I have no fever (actually very low temp 95-96 degrees and often feel freezing cold) and no swollen lymph nodes. I do have the fatigue, PEM, and severe autonomic dysfunction (tachycardia, POTS, low blood pressure, shortness of breath, inability to walk more than a few feet, etc.) At different times I have nausea, muscle pain, bruises on my legs, headaches, and a variety of symptoms but the most debilitating has been the autonomic/cardiac stuff.

I've improved so much since then, especially after Dr. Kaufman treated the POTS. Eating, speaking, showering, etc. are not problems at all anymore. The best day I've had recently was going to a movie, followed by dinner at a restaurant. There were also two days in one week when I was able to go out for coffee with friends. I am still mostly housebound, and I spend much of my time reclining in order to heal faster, but I have made a lot of progress in the past three months.

That is amazing and I am so glad to hear it! What treatments are you doing for the autonomic stuff? I have tried a variety of stuff from my former and current cardiologist (which I always discuss with Dr. K) and recently stopped Florinef which I tried for three mos with no benefit. I am taking Atenolol and just added low dose Midodrine plus a prescription Potassium supplement and drink Pedialyte (yum :vomit:.)

I adore Dr. K and cannot say enough good stuff about him. No matter what ultimately happens to me, I have never had a doctor try to help me as much as he has.
 

Gingergrrl

Senior Member
Messages
16,171
Just catching up with this thread. I'm a patient of Dr. Kogelnik and I'm very happy every time I hear that a new patient of OMI is getting tested, validated and treated.

I always think about organizing a long term stay place for ME patients near our doctors clinics, it is of primary importance. It's something I want to explore more, but in order to do that I need to get better myself.

@NK17 Some day you and I will open a second OMI in L.A. and it will be a comprehensive center of excellence for ME/CFS patients and we will provide housing, transportation, etc. It's just a dream but it makes me happy to think about it. I guess we need to win the lottery first LOL.
 

NK17

Senior Member
Messages
592
@NK17 Some day you and I will open a second OMI in L.A. and it will be a comprehensive center of excellence for ME/CFS patients and we will provide housing, transportation, etc. It's just a dream but it makes me happy to think about it. I guess we need to win the lottery first LOL.
Yes we share a dream, not only The Disease ;).
As far as winning the lottery, the odds are looking really bad for us since we rarely can get out of the house and walk upright.
A solution would be to find lottery machines inside the doctor's office, but that I'm afraid it's never going to happen :lol:. It would be like inciting gambling addiction!
 

jeff_w

Senior Member
Messages
558
@jeff_w

That is amazing and I am so glad to hear it! What treatments are you doing for the autonomic stuff? I have tried a variety of stuff from my former and current cardiologist (which I always discuss with Dr. K) and recently stopped Florinef which I tried for three mos with no benefit. I am taking Atenolol and just added low dose Midodrine plus a prescription Potassium supplement and drink Pedialyte (yum :vomit:.)

I adore Dr. K and cannot say enough good stuff about him. No matter what ultimately happens to me, I have never had a doctor try to help me as much as he has.

@Gingergrrl

Hi Gingergrrl. I'm glad you shared more of your story with me. It does make sense that Dr. Kaufman put you on Famvir and put me on Valcyte. You also made me realize that I forgot to mention the one factor that has helped the most with my autonomic symptoms: Daily IV saline. Have you tried this? Dr. Kaufman did not prescribe this for me. I went into his care already on this (after twisting my primary care physician's arm with research studies, she finally gave in!). Dr. Kaufman is very supportive of my being on the IV saline and has even written orders for it for me.

You may be interested in reading this.

You said that Florinef did not work for you, and you are on beta blockers. I find this very interesting because in my case, Florinef plus a beta blocker (Propanolol) only works in conjunction with the IV saline. Without the saline, my POTS is terrible, even with the OI drugs. With the saline alone, my POTS is bad, but I can walk a little bit. With the saline plus the OI drugs, my POTS is vastly improved. The IV saline is absolutely essential for me to be at all functional. When I tried reducing my saline dose after starting the OI drugs, I quickly became completely bedridden again.

My best guess is that Dr. Kaufman would write you an IV saline prescription in a heartbeat. In terms of dosing, it is generally recommended to take between 1 to 2 liters per day (Disclaimer: I'm not a medical doctor. This is all based on reading medical research). I used to take 1.5 liters per day, but I have needed 2 per day since starting Valcyte. One liter should take a minimum of 1.5 - 2 hours to infuse (faster infusions can blow your veins), and you can go more slowly than that if you want.
 
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jeff_w

Senior Member
Messages
558
I think your treatment plan is amzing and you are in the right track. I have been in the same and have improved from a 3 to a 7.8/8 (I do crash badly back and forth because I over do). Today I would say I am in a 9 easy (I EVEN RUN YESTERDAY!!!). It has taken me about 3 years of treatment.

@lnester7 -

Wow! Glad to hear it! That gives me hope!
 

Gingergrrl

Senior Member
Messages
16,171
@jeff_w

You also made me realize that I forgot to mention the one factor that has helped the most with my autonomic symptoms: Daily IV saline. Have you tried this? Dr. Kaufman did not prescribe this for me. I went into his care already on this (after twisting my primary care physician's arm with research studies, she finally gave in!). Dr. Kaufman is very supportive of my being on the IV saline and has even written orders for it for me.

Hi Jeff, I have had several failed attempts with IV saline including at OMI b/c my veins are so bad. It was not their fault and they really tried in both arms and both hands. They finally got an IV in and I started the process and then my vein burst so we had to stop. I had better success in the hospital, but it was still quite difficult and many nurses had to try. Dr. K was hesitant to put me through this so we held off on the IV saline prescription but he said he would give me one in the future if I decided to proceed.

You said that Florinef did not work for you, and you are on beta blockers. I find this very interesting because in my case, Florinef plus a beta blocker (Propanolol) only works in conjunction with the IV saline. Without the saline, my POTS is terrible, even with the OI drugs. With the saline alone, my POTS is bad, but I can walk a little bit. With the saline plus the OI drugs, my POTS is vastly improved. The IV saline is absolutely essential for me to be at all functional. When I tried reducing my saline dose after starting the OI drugs, I quickly became completely bedridden again.

We must have different versions of autonomic dysfunction which seems to be common. I tried Florinef for three months with literally no benefit and it gave me headaches & pressure in my head. Whereas the Atenolol (at present) completely controls my tachycardia. At the moment, I am only taking 1/4 pill in the morning which is a micro dose but for most of the last 1-2 years I took a 1/2 pill per day.

For the past week I've been taking Midodrine to raise my blood pressure (from my new cardio who put me in the hospital) and after a few days of feeling worse, I am now feeling better. However, it is not long enough for me to be certain it is due to Midodrine. But I definitely feel better on Midodrine than I did on Florinef or on the two combined. Actually the last two days in which I finally stopped the Florinef all together and just taking Midodrine (and micro dose Atenolol) I feel quite a bit better. I also take Famvir, Armour Thyroid and a few other meds but those have remained the same.

My best guess is that Dr. Kaufman would write you an IV saline prescription in a heartbeat. In terms of dosing, it is generally recommended to take between 1 to 2 liters per day (Disclaimer: I'm not a medical doctor. This is all based on reading medical research). I used to take 1.5 liters per day, but I have needed 2 per day since starting Valcyte. One liter should take a minimum of 1.5 - 2 hours to infuse (faster infusions can blow your veins), and you can go more slowly than that if you want.

He definitely said that he would but now he wants to do a blood test for vasopressin and plasma renin levels before deciding about IV's. I understand the reasoning and am eager to do the test but I don't have enough science background to explain it. My cardio also spoke about me doing IV's but in his opinion, it should only be once per week. I have been trying to get the two doctors to speak to each other but haven't been able to make this happen yet.
 

Helen

Senior Member
Messages
2,243
@Helen -

He measured 5 different EBV lab values, all of which came out elevated. They were as follows:

1. EBV Early Antigen D AB (IGG): 1.19
2. EBV Nuclear AG (EBNA) AB (IGG): 4.89
3. EBV Viral Capsid AG (VCA) AB (IGG): 4.34
4. EBV Viral Capsid AG (VCA) AB (IGM): 3.88
5. EBV DNA, QN PCR: 683

It was the EBV DNA, QN PCR that made him say, "I have rarely seen it this high in my practice."

To answer your question about symptoms of EBV infection: I have had fevers everyday for months in addition to tender lymph nodes. I also have other symptoms common to ME: Post-exertional malaise, extreme fatigue, POTS, brain fog, etc. When I first became bedridden last June, I was so fatigued that I needed my parents or friends to assist me with getting out of bed in order to shower. A shower would then leave me exhausted for three days afterward. I was also often unable to use a fork/spoon to eat. So, I had to drink protein fortified milkshakes with spoonfuls of olive oil added to them. There were also times, very early on, when I could not speak. I had to use a pen and notepad to communicate.

I've improved so much since then, especially after using daily IV saline plus having Dr. Kaufman treat the POTS. Eating, speaking, showering, etc. are not problems at all anymore. The best day I've had recently was going to a movie, followed by dinner at a restaurant. There were also two days in one week when I was able to go out for coffee with friends. I am still mostly housebound, and I spend much of my time reclining in order to heal faster, but I have made a lot of progress in the past three months.

It´s really good to hear about your progress. I wondered if it was possible to have the highest lab values that Dr. Kaufmann ever had seen for EBV without having any symptoms. How was it possible to miss your infection by others for so long when you had the typical symptoms of an infection with daily fever for months and swollen lymph nodes?? Anyway, I am glad to see that you get a thourough treatment that already has shown to help you get your life back.
 
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Messages
15,786
@Gingergrrl - Long-term lines can be installed into larger veins, and hospitals can do it with the help of imaging technology to find them. If I ever have much in the way of IV antibiotics or other IV treatments again, I'd probably have to get one installed, since my veins are too narrow and hide too deeply.
 

jeff_w

Senior Member
Messages
558
It´s really good to hear about your progress. I wondered if it was possible to have the highest lab values that Dr. Kaufmann ever had seen for EBV without having any symptoms. How was it possible to miss your infection by others for so long when you had the typical symptoms of an infection with daily fever for months and swollen nymph nodes?? Anyway, I am glad to see that you get a thourough treatment that already has shown to help you get your life back.

@Helen

I had wondered the same thing and asked Dr. Kaufman about it. Based on my chronology of symptoms, Dr. Kaufman thinks that I first contracted mono in August of 2011, when my ME began. He thinks that over the past three years, the EBV would periodically get partially suppressed by my immune system, but that my immune system was progressively weakening, and so the EBV would reactivate at a higher level.

I think the EBV infection was missed by other doctors for four reasons: First, because my monospot test was always negative. Secondly, because I didn't have a constant, high grade fever. For example, if my temperature was normal or even 99.1 in their office, they would dismiss me. Third, the fact that I was able to attend graduate school full time while working part time (until January, 2014) appeared to make the doctors take me less seriously. Fourth, I began taking antidepressants after the first six months of being ill, because losing my athleticism and social life to the illness was making me very depressed. I did not need antidepressants prior to becoming ill. In retrospect, I feel that being on the antidepressants, combined with looking very healthy and being fairly young, made the doctors take me less seriously.
 
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Helen

Senior Member
Messages
2,243
@Helen
I had wondered the same thing and asked Dr. Kaufman about it. Based on my chronology of symptoms, Dr. Kaufman thinks that I first contracted mono in August of 2011, when my ME began. He thinks that over the past three years, the EBV would periodically get partially suppressed by my immune system, but that my immune system was progressively weakening, and so the EBV would reactivate at a higher level.

Thank you for more details. I think there is a lot to learn from your story. Also I guess Dr. Kaufman´s thoughts about how your EBV progressed could be suitable for many PWME who got ME with an infection. Good to know that at last you got a treatment that works.