Gingergrrl
Senior Member
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@jstefl
Thanks and if Valcyte could increase my BP, that would be a great added benefit!
I have also seen three cardiologists. The first was useless, the second diagnosed with with IST and later with some form of POTS but failed to alert me of an abnormality on my exercise echo and felt she had done all she could do for me as my issues were autonomic which was not her expertise. My third (and current) cardio hospitalized me for tests and feels I have severe dysautonmia and micro-vascular angina but knows nothing about ME/CFS. He put me on Midodrine, increased my Atenolol, and prescribed Potassium. He said I am in the sickest 25% of patients that he sees yet every single visit, he asks me if I am able to exercise .
I found those articles, too, and inquired about impedance cardiography tests but learned they are no longer done and there was no follow-up to those articles.
I am extremely weak, too and the slightest exertion can give me shortness of breath.
It sounds like you had a great doctor. Do you think you would ever try Valcyte again now that more info is known?
That is amazing and to look after three children that young takes an incredible amount of energy. I would be thrilled if I could get my BP up to 110/60 (which I can't even reach with Midodrine!) and be able to drive pretty much wherever I need on my own.
Thank you and I will take a look at this. My HHV-6 antibody is positive only on IgG and negative on IgM but I am learning through all this research that this doesn't seem to much matter and Valcyte works as an anti-inflammatory and anti microglial separate from any anti-viral role. I also have two other active IgM's on viral tests.
Thank you for sharing that added info and I am basically wheelchair bound when we go outside unless I am only walking a few feet from the car to inside someone's home. But anything of a longer distance, I require a wheelchair. And prior to being ill, I could go on a two hour walk and work out at the gym with no issues. You have given me a lot of hope re: Valcyte, thank you!
I have no idea if others have increased their BP while taking Valcyte. I just know that it happened to me.
Thanks and if Valcyte could increase my BP, that would be a great added benefit!
Prior to starting Valcyte, I had been to three different cardiologists, two of them electro physiologists, including one at the Mayo Clinic. I had every conceivable test done, and of course, they could find nothing wrong. The first cardiologist ended up giving me a prescription for an anti depressant. The second gave me the Midodrine, and when I asked him what was wrong, he said that I was like a computer, and needed rebooting. The third one just referred me to a Neurologist.
I have also seen three cardiologists. The first was useless, the second diagnosed with with IST and later with some form of POTS but failed to alert me of an abnormality on my exercise echo and felt she had done all she could do for me as my issues were autonomic which was not her expertise. My third (and current) cardio hospitalized me for tests and feels I have severe dysautonmia and micro-vascular angina but knows nothing about ME/CFS. He put me on Midodrine, increased my Atenolol, and prescribed Potassium. He said I am in the sickest 25% of patients that he sees yet every single visit, he asks me if I am able to exercise .
It was about this time that I found articles by Peckerman and Natelson on the internet. They seemed to be the only ones that understood that a viral infection can affect the heart. I suppose that the tests were necessary to rule out any potential problems, but it was very evident that when their tests didn't indicate any blockages, they were out of ideas.
I found those articles, too, and inquired about impedance cardiography tests but learned they are no longer done and there was no follow-up to those articles.
Before I started Valcyte I was extremely weak. The slightest exertion would cause shortness of breath. I nearly passed out every time I stood up, and I was afraid to drive as the brain fog was so severe.
I am extremely weak, too and the slightest exertion can give me shortness of breath.
I stopped taking Valcyte at my doctors orders. Remember, this was back in 2008, and not that many people had taken Valcyte for CFS. My doctor had gone out on a limb for me by prescribing the Valcyte, and there weren't any studies published to guide him, or me, in the use of Valcyte. The use of Valcyte was at my request. I had blood tests from Focus labs, and a tissue sample analyzed by Dr. Chia that showed evidence of viral infections. These tests were at my request. My doctor would never have prescribed Valcyte without my urging, and I am very thankful that he went along with my ideas.
It sounds like you had a great doctor. Do you think you would ever try Valcyte again now that more info is known?
The Valcyte didn't cure all of my problems, but helped me more than anything else that I have tried. I have gone from being almost bed bound in 2008 to being greatly improved today. I can now stand up without getting dizzy most of the time, I have much less brain fog, I sleep a lot less, my pulse and BP are still a bit low, typically 110/60, but are within a healthy range. I still don't like driving on really busy roads, but pretty much go where and when I want to. I am able to look after a grandson three days a week for 10 hours a day. I have three grandsons, 4, 3, and 7 months, and have one each day. I could not have done this before Valcyte.
That is amazing and to look after three children that young takes an incredible amount of energy. I would be thrilled if I could get my BP up to 110/60 (which I can't even reach with Midodrine!) and be able to drive pretty much wherever I need on my own.
I, and several others, detailed our Valcyte experience on the HHV-6 foundation website http://hhv-6foundation.org This site is a great resource for information about Valcyte and other antivirals. If you read through the patient forums there, you can get a good idea of what to expect.
Thank you and I will take a look at this. My HHV-6 antibody is positive only on IgG and negative on IgM but I am learning through all this research that this doesn't seem to much matter and Valcyte works as an anti-inflammatory and anti microglial separate from any anti-viral role. I also have two other active IgM's on viral tests.
While at a conference in 2008, I met the wife of Dr. Dharam Ablashi, and talked to her about her experience with Valcyte. She told me that she had been wheelchair bound before taking Valcyte. At the conference she claimed to be cured, and, from what I saw, she was pretty darned healthy. It probably helps to have a husband that was the co-discoverer of HHV-6, but I believe that a cure is possible for all of us.
Thank you for sharing that added info and I am basically wheelchair bound when we go outside unless I am only walking a few feet from the car to inside someone's home. But anything of a longer distance, I require a wheelchair. And prior to being ill, I could go on a two hour walk and work out at the gym with no issues. You have given me a lot of hope re: Valcyte, thank you!