Thursday, August 19, 2010
At the beginning of this year I was on anti biotics for 2 months. I had been suffering with an ongoing pancreatitis issue and further investigation found a gut bacterial overgrowth issue. This on top of my Celiacs could have been part of the reason that I crashed into full blown CFS. Anyway, while on antibiotics I experienced gradual but significant improvement of all my CFS symptoms as well as the gut bacteria problem. Since stopping the antibiotics I have slowly worsened and experienced new dramas with the onset of POTS and OI.
After talking to my Dr and doing my own research I figured that perhaps I did infact have other bacterial issues that were either causing or impacting upon the CFS. My Dad showed me some articles about the Marshal Protocol which was really interesting. This protocol suggests that for some people their CFS is bacterial based and it addresses how to deal with it. This protocol specifically looks at Mycoplasma type bacteria. I was quite convinced; however I tested negative for Mycoplasma so this particular protocol would hypothetically be of no use to me. My Dr did however email this link for the CPN protocol which is similar in theory but works on a different type of bacteria. I haven’t been tested for this type because there is only one lab in Australia which do the test and when I enquired some time ago they said they were currently not doing it but probably would be again in the future. So ….. it is a possibility. My Dr also said he has had several patients follow the CPN protocol and seen significant improvement. The downside is that most of the people using the protocol are people with MS not CFS and they seem to have lots of trouble with herx or detox etc. Apparently most CFS patients using it have less trouble.
My current plan is to go back on the same antibiotics which I used at the beginning of the year for a few weeks as an experiment and see what happens. I actually started them a week ago and already I have improved. The POTS and OI is just the same but all my other CFS symptoms have been better and I am thankful for that. If I continue to improve over the next 2 weeks then my Dr and I will consider looking more closely that these protocols and similar ones.
Has anyone had experience with these or with antibiotics in general??
Thursday, August 5, 2010
My thoughts are a bit scattered today, most days in fact hahaha!
Firstly I went and saw the POTS specialist a few days ago. He didn’t really have a lot to ad to what I already knew and what my regular Dr had said. He did confirm the diagnosis without making me do the icky tilt table test which is good, I was dreading the thought of having to do that. For anyone who doesn’t know about it they basically strap you to a table and tilt it upright as though you are standing. They leave you there until either you pass out or you reach 45 minutes. Either outcome sounds awful for someone with CFS. Anyway back to the point ….. the specialist basically said I should continue with the Saline infusions if that is helping (it is helping), I could also try FlorineF with salt and water which would also work well with the Saline infusions. If that doesn’t help then I could try drugs like Mitodrine, which helps some people but is expensive here in Australia. At this point in time I have decided to just stick with the Saline for a few more weeks and then re-evaluate. I am feeling significantly better than I did in my previous post.
Something else I am noticing is a real increase in weakness in my legs. I am not sure if it’s just because of the CFS or if it is genuine muscle weakness because I am spending so much time laying down that my muscles are wasting. I am tempted to try doing some kind of minor leg exercise to strengthen the muscles but I am really scared of causing another crash.
What does everyone else think about this??
In the same vein as the leg situation I think my brain and general zest for life seem to be diminishing. Again I wonder if it is because of lack of stimulation or if it is directly due to the illness? I do feel like I need to find a way to get out of my 4 walls more often. It’s difficult because many days I am just to ill and on the days when I think I might be able to manage it I am either just to scared in case the POTS stuff happens and I get dizzy or it just seems to difficult. To get out I need help from someone else and that means asking someone to be my babysitter. Mmmmmm ….. what to do, what to do??
I am also feeling very frustrated at the moment. I have a huge list of projects that I want to work on but I can’t seem to gather myself to start anything. By the time I have a shower and get breakfast I am pretty much done until lunchtime and then standing to make lunch exhausts me and so the day goes on ….. AAAAAHHHHHH ……. Frustrating, hahahahah!