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Time for an update!
My second appointment at the Open Medicine Institute was very informative. Though extensive bloodwork Dr. Kaufman found the following issues:
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.
- 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
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.
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.
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?
@Gingergrrl - I had only EBV. He didn't say why he chose Valcyte as opposed to Famvir or Valtrex.
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 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.
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.
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.
Yes we share a dream, not only The Disease .@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.
@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 .)
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.
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.
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 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.
Out of town patients might consider registering at couchsurfers.com
@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 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.