Wednesday, March 31, 2010

Spoke Too Soon...And Stem Cells

 I spoke too soon about my relapse being over and about Mestinon. I wrote a post on Mestinon last week but took it down. I do think this medication can be helpful for people and that its worth a trial if you have severe OI (orthostatic intolerance). It looks like it was the cause of my near fainting episodes so I have discontinued it.

I'm going to try Midodrine but I need to get a blood pressure cuff first so I can monitor my blood pressure as Midodrine can cause supine hypertension. Since high blood pressure runs prominently on both sides of my family and my blood pressure has been high at times my doctor said to monitor it while trying Midodrine.

I'm still in my relapse. It continues to be severe. It was nice to have a brief break and I think it was due to the Mestinon but my body can't tolerate it so I won't be continuing it.

I have worked everything out with my doctor. We were able to talk through all the problems and difficulties. I feel pleased with how we worked through this and that he took 100% responsibility for what happened. The administrative issues are being addressed and I'm confident they will be resolved. I also feel good in that I was direct about how I  felt about what happened. So it's all good.

Now I have to find my way out of this relapse. I'm going to start some probiotics-the same ones that Dr. Cheney uses with his patients (Mutaflor from Germany).

I've been going back and forth between trying two treatments. Either Rituxamab or Stem Cells. After doing a lot of reading about Rituxamab I decided against that because of the potential for lethal side effects. I have an opportunity to try stem cells and have decided to go forward with that depending on the outcome of my SSDI case. I plan on using some of the back pay money for stem cell treatment.

I'm going to follow the protocol that Cheney uses to prepare patients to receive stem cells in the hopes that it will make the treatment successful.

I figure I have nothing to lose at this point by trying this treatment. I'm bedbound over 22 hours per day as it is. It's going on 5 months now and I'm beginning to worry this is my new normal. Sometimes I lay here in bed trying to figure out a word that would describe the profound fatigue that is occurring. I haven't come up with anything yet. Fatigue doesn't even come close to describing it. I have never experienced it at this level before though. I'm trying to let it happen rather than being afraid of it.

I'm going to be getting another brain scan because of the continuing decline of my cognitive abilities. This time it will be read by someone who knows about ME/CFS and hypoperfusion.

I'm occupying myself with watching a series called The Shield. I'm enjoying it. The Wire was also really good if anyone is looking for shows to watch. I have Netflix which is great.

Still no news regarding my XMRV results. I think its going to end up being applicable to a subset of ME/CFS patients but not everyone. I'm no longer researching it nor do I consider it to be THE cause of ME/CFS. I base this on certain facts that I'm not at liberty to share right now but will when I'm able to. I feel a certain responsibility to share this information because I posted info regarding testing (which I have  removed from my blog) and posted that I thought this was the answer to ME/CFS. I have the utmost respect for the Whittemore Peterson Institute and will continue to donate to them because I do feel they are our best chance for some answers but XMRV isn't it.

If all goes as planned I will be starting stem cell treatments in mid-May.

Tuesday, March 16, 2010

Relapse Over??? Mestinon!

I'm almost hesitant to post this but I think my relapse may be over. I seem to be back to baseline for which I'm very grateful. 

Sunday I was able to out for about an hour. My partner drove me to a park nearby and I was able to take in the beauty there. I was struck by how many shades of green there are. It was so beautiful.

Yesterday I had to go back to the podiatrist because of another infection starting in my big toe. He had to cut back the nail and dig underneath the nail because there is some sort of fungus. I think between my poorly functioning immune system and the poor circulation that I may set a record for the most staph infections in the past 2 years. I go back in a week to see what the fungus is and then start on anti-fungal treatments.

I think what has helped is I finally started taking the generic version of Mestinon (Pyridostigmine Bromide) which is typically used to treat Myasthenia Gravis but is also used off label to treat POTS. Mine has been getting worse and I've been having increased episodes of feeling faint so awhile ago my doctor added this along with Midodrine. After reading the side effects of Mestinon I felt leary of taking it but finally decided to after trying to go to the restroom Friday evening and almost fainting again. Luckily I get warning signs so I'm able to take action prior to actually fainting.

So I started the Mestinon at 15mg which is 1/2 the dose recommended by my doctor. I did have side effects on Sunday but then felt well enough to leave the bedroom AND the house which felt like a major feat. Yesterday was also a pretty good day.

Today I'm fatigued but I've had trouble sleeping the past couple nights.

I'm grateful that this medication is helping my POTS symptoms. I hope it continues.

I wanted to thank everyone who responded to my post last week. I felt so much support from all of you and it helped. I don't know what I'd do without my blogging friends and the blogging world. I feel lucky.

I still haven't heard a word from my doctor. I've sent many emails with some getting sent back so I contacted the practice manager to alert her to potential email problems. Boy was she rude! I was so taken aback because my initial conversation with her when I was thinking about becoming a patient there was in such sharp contrast to the one I had last week. I also heard last week from a friend that there are some troubles occurring there along with some major boundary problems so I'm keeping my distance. I've given up on trying to get the rest of the documentation needed for my SSDI ALJ court hearing from my doctor. It's too much stress for me to worry about. My lawyer has also given up. Little do they know they are creating bad impressions with various doctor's, lawyers, and patients down here. I can not and will not recommend them to anyone until some things get cleared up and other things change.


I'm astounded that my doctor still has failed to follow up on ordering the HIDA scan to see if my gallbladder is functioning as well as a couple other crucial medical issues. I'm still having problems with the upper right quadrant pain.


That's it for now....

Sunday, March 7, 2010

David and Goliath

I feel like David going up against several "Goliaths" at once. First I want to apologize for being absent from the blogging world for so long. I haven't been able to read blogs or comment on my the blogs I love to read.

There is a lot going on not to mention the severe relapse I've been in since late October. This is my first prolonged relapse and I have to admit its starting to frighten me that I'm not coming out of it. I'm not sure what else I can to stop myself from being pretty much bedbound for 22 hours of the day. I've been trying to do some reading when I can to try to understand what I can do.

My ALJ hearing is coming up. For my friends in the UK this is a hearing that occurs after being appealing two denials for my SSDI benefits. I've been in this process for the past two years. I'm very stressed out about it because I've had some bad luck in that both my primary treating physicians died within one year of another. So I'm having to rely solely on my ME/CFS doctor's reports. I do have an attorney but I'm also trying to do research and prepare for the hearing on my own.

So it is with these two things in mind that I went to see my ME/CFS doctor two weeks ago. One was in the hopes that he would be able to help me figure out how to get out of this relapse and the other was that I needed two more things from him to help me with my SSDI case. I needed him to fill out two more questions that my attorney had prepared. The judge in my case is brand new and a vocational expert will be there so my attorney thought it would be a good idea for my doctor to answer these two simple questions. I also needed to get his (my doctor) curriculum vitae.

I was unprepared and a bit shocked at what occurred during my appointment. First a little background. Back in December I had a heart to heart with my doctor because I felt there were some big problems that had happened and I needed to know if he still wanted to treat me (I've talked about the problems at various times in my blog). One of them is the length of time it was taking to get him to fill out any paperwork. He was late getting one ssdi report to my attorney which caused me to miss the deadline. Had I not had an attorney that had to file some paperwork to resolve it I would have had to start over from the beginning. He also filled out my student loan deferment late causing me to be late on my student loans (he knew both deadlines and took over 2 months to fill out the paperwork). It was getting to the point where the "care" I was getting from him was sloppy-medication refills were taking as long as 2 weeks etc...Abnormal labs were overlooked, etc...

So during our heart to heart he said he was still interested in treating me etc....

I was driven to my appointment which is over an hour away. By the time I got there I was in bad shape. He could see how bad I was doing and how bad I was struggling cognitively. He has never seen me as bad off as I was-the weight loss, pale face with dark circles under my eyes, I couldn't get a complete sentence out, etc....I told him I was having increased episodes of feeling faint and one night got up to go to the bathroom and ended up needing to lay down on the kitchen floor so I wouldn't pass out. I'm having a lot of difficulty tolerating being in a passenger in a car for some reason.

He told me that there was nothing else he could do and the only thing that would help were stem cells. Now I expect to hear that from a regular mainstream doctor but I didn't expect that from him. He also refused to order more tests (like EBV) for my SSDI hearing claiming I "had enough evidence and all I needed to do was tell the judge that I would appeal his decision" if he turned me down. He did not fill out the form I gave him and now 2 weeks later and one month before my hearing I still don't have the form or his CV. My attorney needs both asap so he can submit them to the judge prior to the hearing.

My emails have not been replied to. At all.

The day after my appointment I fell into a deep, despairing depression. Had I the means I would have taken my life that day. I know this isn't what people want to hear but it's the truth and a grim reality we all face. The suicide rate for people with this disease is way too high. And one thing I know for sure is that I do not want to live the rest of my life like this. I'm just not strong enough.

All I could think about was that I would never get any better and that there was no help at all anymore-that I would be stuck in this relapsed state for the rest of my life. I felt like any hope I had was taken away with his comment "there is nothing more I can do." Not only did he say that but he said I might have improvement.

Then there is the preparation involved with SSDI appeals. It is such a crazy and demeaning process. My family wrote letters describing the cognitive decline they have witnessed since I became ill. It was as painful for them to write as it was for me to read. It's bad enough that I've lost the life I had but to lose my mind as well....I had to keep reminding myself that this isn't how they see me and that this isn't all of who I am. It was painful for them to put this down on paper. I had a really good mind. I used to be really, really smart...

My closest friend, who is also bedbound with ME and lyme and who I can share everything with even though we have never met, did some research online trying to find my doctor's CV. She didn't find that but she did find some disturbing information about him. It has been troubling me and I am glad that the disability system is so overwhelmed they don't have time to research doctor's. If so I would lose my case.

I always said that if a doctor told me there was nothing more they can do then I would change doctor's which is exactly what I'm going to do. He seems burned out and going through the motions. I've heard this from other patients also.

He told me that Famvir was "useless" (I was trying to find out if Famvir is bad for gastritis) and that he just isn't on board about the XMRV findings. I was angry at him for his arrogance. People have had improvement from Famvir and if he thinks its so useless why did he prescribe it for me just 3 months ago. I also don't agree with his attitude regarding XMRV. I think it is a very significant finding. It became clear to me during the appointment how unaware he is of the current literature on ME/CFS. He's too busy to keep abreast of these things he claims.

I am continuing to do spiritual reading but I think I'm in such a bad relapse and having such trouble cognitively that it doesn't feel like its helping. It might be one of those things that takes time. I just hope there is a God or Higher Power.

These are the reasons I've withdrawn from most everything. I'm just struggling to keep hanging on to a sliver of hope.

I'm sorry this is such a down post. I'm truly at my wit's end...

If anyone has been in a dark place and was able to turn it around by deepening your sense of spirituality, I would sure love to hear how you did this and how long it took. I feel like I'm praying all the time with just an empty silence to greet me...