jeff_w
Senior Member
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@Gingergrrl - Thanks so much for your reply and for saying this. I actually was feeling guilty, which doesn't help anyone else and was bringing me down a bit.Hi @jeff_w
I've been wanting to reply to this thread and didn't get a chance until now. I am so happy for your recovery progress and you have always given me a lot of hope. Never feel bad or guilty for getting better. Never.
I have read in journal articles that people recover more quickly when they're younger. Interestingly, children and adolescents tend to have excellent recovery rates (again, according to research). Another journal article stated that people under age 38 recovered much more quickly than people over age 38 during a leaky gut intervention for CFS/ME. (I'll say more about this intervention in a bit.)I've been thinking about why my recovery has been slower and different than yours and wanted to see what you thought of my ideas. (I know you are not a doctor but just curious what you think as a fellow patient since we both had mono/EBV as a main trigger.)
~ My first thought is that you got ill in your early 20's and me in my early 40's and it is just harder to recover from severe mono/EBV when you get it later in life.
That being said, I've heard stories about people who, even in their 60's, recovered very well. There are so many possibilities.
This very well might be part of it. I'm now on both Valcyte and Famvir. My improvement was slow and steady on Valcyte alone but wasn't so remarkable until I added the Famvir on December 20th. I'm wondering if the two anti-virals have a synergistic effect. I actually had a reactivation of EBV on Valcyte alone. However, I still felt quite a bit better and was semi-functional during the reactivation--it didn't wipe me out. That might have been due to the anti-microglial and anti-inflammatory effects of Valcyte. Could you add Valcyte to your regimen?~ My second thought is that I tried Famvir and you tried Valcyte (and this was by my own choice b/c I was afraid of potential side effects from Valcyte and I did not have other infections like HHV-6 or CMV.) But now I wonder if the Valcyte helped you by the anti-microglial effects in addition to anti-viral which I did not get with Famvir?
I'm also taking Low Dose Naltrexone (LDN), which is another anti-microglial drug. I skipped the LDN one night, a month ago, to see what would happen. The next day, I ached everywhere, had difficulty moving, a terrible mood, and far less energy than usual. Could you try LDN?
I did sense that the saline helped my body adjust to a more normal state and thus heal. The constant, severe orthostatic intolerance seemed like a constant trauma on my nervous system, and the saline helped take care of that. I also had low blood volume, which was another a strain on my body, and the saline eliminated that as well. I was on daily IV saline (1 to 3 liters) for 4 months before I was well enough to stop. Perhaps easing these two problems for 4 months (1. Severe orthostatic intolerance; and 2. Low blood volume) helped my body return to a much more normal state. I wouldn't be at all surprised, as my body was far less traumatized and strained for 4 straight months.~ My third thought is that you were greatly helped by the IV saline which for whatever reason, my body was not able to tolerate. I had that weird fluid overload reaction with flash pulmonary edema from one liter of saline which could have killed me. I wonder if I could have tolerated the saline better, if it would have helped me long term? I think you also tolerated the methylation supplements (which I did not) and wondering how these made a difference?
If I remember correctly, you tolerated saline well at a lower drip speed, while the higher speed caused the pulmonary edema? I wonder what would happen if you asked Dr. Kaufman for permission to do a tenth of a liter? Is that low amount capable of causing a pulmonary edema? What if you did one tenth *very* slowly, over the course of an hour, once in the morning and once before bed? Although, I understand that you might not want to go near saline ever again.
Yes, I tolerated methylation supplements just fine, and I seem to get a slight benefit from them.
~ My fourth thought is that you had high titers of EBV by PCR (which I did not have.) So in some ways you still had active mono itself when you saw Dr. K so you were immensely ill in a way that I was not (b/c I was negative on EBV PCR test- but positive on all other EBV tests.) So I think I had a re-activation of EBV which has caused me all kinds of autonomic damage but in some ways you still had the actual mono itself which it sounds like is now cleared.
Perhaps. I'm also taking about 15 supplements, all of them are supported by peer-reviewed academic journal articles. I run each one by Dr. Kaufman first, and send him the research articles, to get his final opinion before starting them. I've had a dramatic improvement from them. Some of them are related to the leaky gut intervention that I talked about above. I should post about these soon. (ALSO: Did the OMI test you for SIBO?)
It is difficult but I'm resting a lot.Please don't try to push it and your recovery is still very new and fragile. You should still be resting every day (which I always feel hypocritical saying to others b/c it is so hard for me to practice myself.)
Thanks! And you can PM me to discuss regimens.It doesn't make me sad b/c I know where you have been and how hard you worked. It has also made me think and wonder if there are things that I can do differently although I know each of our bodies are different and recovery is so unique and individual for each person.
I will advocate. Absolutely. This has been a life-changing experience that robbed me of years of growth and experiences that could have been great. I hate knowing that so many others with CFS/ME are suffering the exact same fate, some even worse.You can also use this as an opportunity to help with advocacy and fundraising for OMF and the End ME/CFS Project. I have done a little bit but if I ever become well again (or even a little bit better) I will be using my skills as a social worker to help others (and myself!) with ME/CFS worldwide.
Definitely.I look forward to the updates and if you do leave PR, let's please exchange e-mails so I can continue to hear how you are doing or how we can work to help OMF and future ME/CFS research.
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