Hi everyone,
It has been a really long time since I have posted here. I'm hoping to get some input based on what I've been going through and what the next step should be as my dr is trying to figure it out with me and I feel we need all the guidance we can get.
My ME started after an illness I couldn't fight off 12 years ago. I distinctly remember a day when I couldn't take my ice skates off (I was an athlete and a figure skating coach). Prior to this I had been biking 7 miles a day and teaching and working a part time job. I had been coughing for so long that I got a hernia from coughing. About two years prior I had lived in an apartment that had a serious mold issue.
I have been through a gammet of treatments. The one that helped most was the oral hydrocortisone. Suddenly I could work and be a human again. But I have been on this medication for a long time and I don't want to need a medication to function. Plus I've had a ton of autoimmune issues requiring steroids and I'm trying to limit the amount I'm on. I've been taking binders for a year for mold and I'm taking a lot of supportive supplements (nac, glutathione, gaba, tumeric, thymulus, ect). I've also been taking naltrexone since February.
My newest primary care Dr started me on IVIG therapy with gammaguard. He had noticed that one of my immune markers was consistently low. I usually get sick about 4xs a year and can't kick it. I also get skin infections, especially my nails for some reason. The IVIG boosted my energy a lot, after being home for a couple of days afterwards to recover. I was able to half my oral hydrocortisone so that was exciting. My energy in general has gotten better with each baby step I've taken. I usually take a couple steps forward then a couple steps back.
Now comes the not so good news. My new dr did a neuroquant scan. I have a lot of areas that seem to be damaged. He said it looked like PTSD and issues with my limbic system. My parahypocampus is almost non-existent. There is damage to multiple parts of my brain. I was having a lot of memory issues and I might now know why. I'm worried because my Dr basically said he had never seen a scan like this and he needed to think about what to do.
He's been thinking about it for a while (my appt was a month ago). I read about limbic system training but I don't have the money to invest right now. I've been meditating and doing yoga each day and trying to be as positive as possible but I'm not sure what my next step is and I'm out of ideas this time.
I just don't want to end up in therapy again because that was a horrible waste of my life. All they wanted to do was put me on meds and kept telling me that I was never going to get better from the fatigue and I just needed to accept that. If I had accepted that I never would have gotten to where I am now.
So does anyone have any ideas on helping recover a damaged brain? I'm willing to try anything within reason.
Thank you for listening!
It has been a really long time since I have posted here. I'm hoping to get some input based on what I've been going through and what the next step should be as my dr is trying to figure it out with me and I feel we need all the guidance we can get.
My ME started after an illness I couldn't fight off 12 years ago. I distinctly remember a day when I couldn't take my ice skates off (I was an athlete and a figure skating coach). Prior to this I had been biking 7 miles a day and teaching and working a part time job. I had been coughing for so long that I got a hernia from coughing. About two years prior I had lived in an apartment that had a serious mold issue.
I have been through a gammet of treatments. The one that helped most was the oral hydrocortisone. Suddenly I could work and be a human again. But I have been on this medication for a long time and I don't want to need a medication to function. Plus I've had a ton of autoimmune issues requiring steroids and I'm trying to limit the amount I'm on. I've been taking binders for a year for mold and I'm taking a lot of supportive supplements (nac, glutathione, gaba, tumeric, thymulus, ect). I've also been taking naltrexone since February.
My newest primary care Dr started me on IVIG therapy with gammaguard. He had noticed that one of my immune markers was consistently low. I usually get sick about 4xs a year and can't kick it. I also get skin infections, especially my nails for some reason. The IVIG boosted my energy a lot, after being home for a couple of days afterwards to recover. I was able to half my oral hydrocortisone so that was exciting. My energy in general has gotten better with each baby step I've taken. I usually take a couple steps forward then a couple steps back.
Now comes the not so good news. My new dr did a neuroquant scan. I have a lot of areas that seem to be damaged. He said it looked like PTSD and issues with my limbic system. My parahypocampus is almost non-existent. There is damage to multiple parts of my brain. I was having a lot of memory issues and I might now know why. I'm worried because my Dr basically said he had never seen a scan like this and he needed to think about what to do.
He's been thinking about it for a while (my appt was a month ago). I read about limbic system training but I don't have the money to invest right now. I've been meditating and doing yoga each day and trying to be as positive as possible but I'm not sure what my next step is and I'm out of ideas this time.
I just don't want to end up in therapy again because that was a horrible waste of my life. All they wanted to do was put me on meds and kept telling me that I was never going to get better from the fatigue and I just needed to accept that. If I had accepted that I never would have gotten to where I am now.
So does anyone have any ideas on helping recover a damaged brain? I'm willing to try anything within reason.
Thank you for listening!
