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.

24 comments:

Laurel said...

So sorry to hear of your continued crash and the new med not working out. That's exciting about the possibility of receiving stem cell therapy, though!! I will keep my fingers crossed for you. I'm one with high hopes for XMRV panning out.. I guess because I'm positive. :) I'm curious to know what information you have... I guess time will tell for us all. I just hope the answers come soon. So glad you worked things out with your doctor. Hope the SSDI approval goes through soon so you can rest and focus on getting well. Hugs!

cfswarrior said...

Hi Laurel-

I think for people who are XMRV positive (I'm sure I'm positive also) that there will be treatments. I think there is so much interest in XMRV that the people who test positive will be in a good position to put their disease into remission once they figure out what treatment is effective. So I think the news is still good but because a certain subset of patients will discover what is causing their disease to progress and at some point will have treatments.

It's going to be tough for the subset of patients who end up testing negative because there isn't any answers for them yet.

I'm excited about seeing what happens with stem cells. I'm interested in finding out how stem cells will help those of us with a severe case of ME/CFS.

I can't wait until this SSDI process is over. It's been a big stressor!

I'll keep you posted on what I find out. I may try to email you privately at some point....

linda said...

i too am sorry to hear all this...i wish you would consider going gluten and casein free for a period of time, say 4-6 mths to start, to see if it doesn't help your symptoms....your body is being bombarded with such heavy doses of heavy meds, i don't know how you even stand up at this point...i know next to nothing about stem cells and cfs/me but will be interested to hear about it.
xo

Toni said...

Lots of news from you Terri! First, I'm so glad you worked things out with the doctor. That must take a big load off your mind. Not only does it sound like you have a doctor on your side now, but the SSDI can go forward.

I agree that it looks like XMRV will only apply to a subset of CFS patients. Much to my surprise, I tested negative. I have such a severe case of CFS -- like you am bed-bound much of the time -- that I assumed the test would be positive. But it wasn't.

You were looking for a word to describe your fatigue. The first place I saw the fatigue we experience being characterized "correctly" was on the CFIDS Association website. It describes our fatigue as "bone-crushing fatigue." When I use that term with people, most of them "get" that I'm not talkin' tired or any ordinary fatigue.

On the OI, I assume you've tried Florinef. Sue is the expert here and says it seems to help children more than adults. I tried it and it didn't help me, but I've read about people with CFS -- adults -- who have been helped. It's an alternative if the Midodrine causes your blood pressure to go up.

The stem cell treatment sounds exciting. I'm glad you have the opportunity to get try it. I didn't know it was available to people.

And, lastly, I haven't watched The Shield but, I agree that The Wire was excellent. Not easy to watch, but excellent. I also loved the HBO series Deadwood (warning: lots of profanity!).

I hope the relapse begins to subside soon.

Toni

Alison said...

It was good to read this because I've been thinking about stem cells a lot lately. I was just talking about it with a friend yesterday who has Sjögren's, she was considering another round of rituxamab, I was thinking about the stem cells. I had no idea anyone was using rituxamab to treat CFS. I'm seeing Dr. Cheney for my second appointment in a few weeks, I'm sure he'll bring stem cells up, but I don't know if I'll be ready as soon as May. That seems so soon. I hope it will be a big help for you! And for me too, if I do it.

Jo said...

I think it's amazing that you managed to work it out with the doc given all the problems you had with him/her and, also your current condition. You are an awesome woman.

Lee Lee said...

It is so hard to know what to do!!! So many treatment options and non with proven results. The stem cell treatment does sound very interesting. I guess all we can really do at the moment is acknowledge that each up us is different and has this for different reasons. Eating gluten free is essential for me and I know that bacterial gut issues certainly plays into my CFS, but like I said, we are all different.
It's great you have resolved things with your Dr an dyou can now move forward with some confidence :)

Pris said...

It's good to hear what's going on with you, but not the news itself. I agree with you about the retrovirus. Just too many negative results now to be considered all methodological errors or differences.

Good luck on the stem cell treatments!

cfswarrior said...

Hi Linda,

I'll keep you posted about stem cells via here and email.

I'm off most meds except for sleep, thyroid, hydrocortisone, and pindolol.

I'm wanting to go gluten and casein free. Once I get my weight up I plan on going gluten free. I think its a good thing to do regardless.

Thanks for the reminder. I'll send you an email over the weekend...

cfswarrior said...

Hi Toni-

I'm so relieved to have worked things out with my doctor. I wanted to work things out regardless of whether I continued with him or not and was glad for the opportunity and his receptiveness. He really got it.

I'm surprised you tested negative also. We seem to share similar reactions to treatments as well as symptoms so it may well be that I'll test negative also. My blood has been at WPI since early November. While I'm glad they are testing me I am getting frustrated with the length of time its taking. I'd like to know one way or another...

Bone crushing fatigue-that's a great description and apt.

Thanks for the tip about Florinef. I haven't tried it yet but I will if the Midodrine doesn't help (now all I have to do is get the blood pressure monitor).

I'll have to check out Deadwood! The Wire was hard to watch at times. The Shield has some dark intense themes going on also but its so good!

I hope the relapse subsides soon also. It's feeling eternal at this point...

It's always good to hear from you!

cfswarrior said...

Hi Alison-

How did your friend do on Rituxan? I'm curious about knowing people's experience with it aside from reading about it.

You're lucky to be seeing Dr. Cheney! He seems like he's pretty brilliant.

The May date isn't with Dr. Cheney's group. I don't know when his next group heads down.

Keep me posted on what you decide. I'd like to start a group for patients doing stem cell treatments.

cfswarrior said...

Hi Jo-

Thank you. That means a lot. In spite of the problems I've had I like my doctor and it felt important to be direct with him regardless of what I decided to do in terms of continuing to work with him.

Even if it hadn't worked out it was worth the effort.

cfswarrior said...

Hi Lee-

One thing I've learned over these past few years is that the disease manifests itself differently but similarly in all of us so what works for one may not work for another.

I plan on doing a post describing every treatment I've tried over the past almost 3 years.

Going gluten free is something I need to try though.

cfswarrior said...

Hi Pris-

I agree with you. I'm not pleased with the news either.

I agree with you also about xmrv -there are too many negative results for it to be simply methodological error. While that has been going on in other countries I don't think that's the case here.

We'll see what happens with stem cells. Since I seem to be getting worse rather than better I have nothing to lose...

cfswarrior said...

Hi Ginger-

I don't use that email address anymore. I'll see if I can still access it to get your email address.

I'll send you an email over the weekend. It will be good to reconnect!

Terri

Alison said...

I know it was hard for her at first on the Rituxan. I remember she had a lot of fevers and felt worse for awhile, but lately she has made a significant improvement, her joint pain has kept her in a wheelchair and she's been able to walk and stand for a half hour to an hour. She's not sure, but she might do another treatment. Thinks it might be worth it. Her blog is at novelpatient.com if you want to ask her anything.

A group for stem cell patients is a good idea. I'll definitely keep in touch about what I decide to do. I think Cheney will probably talk me into it, he is pretty brilliant, which can be persuasive.

Nishant said...
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Janis said...

Hi Terri,
I'm also considering stem cells. The thread on Phoenix Rising is most informative. Copy me any info you collect from patients with ME/CFS who've tried it.

Glad you have reduced meds. I found over my long haul (23 years) with this illness that taking meds usually ends up making me more toxic. My doc now has me off all benzos and I am actually sleeping.

Your friends are right about going gluten free. Test your genetics at enterolab.com. If you are one of the 66% with the allele that attacks gluten, you'll gain more weight when you get off, but it takes 1-2 years for the gut to fully heal.

mojojojo said...

Hey Terri,

Such exciting news. Like Janis and Alison, I'm also considering stem cells if NT with homeopathy doesn't lead to full recovery. And I am XMRV positive via culture.

I look forward to see how you do. Mid-May is so soon!! You're brave to consider this, but at the same time, there's really not much to lose in our position, and certainly even less so when you're bedbound 22 hrs a day.

Thanks for keeping us posted!

joey

Anonymous said...

So sorry to hear you crashed, cfswarrior. I'll be keeping my fingers crossed for you re SSDI. Curious, where will you be going for the stem cell?

I second the Florinef. It helped me at least get my low BP under control. I could stand without dizziness. A huge win. Digoxen and Atenolol helped with the high HR/Heart palps. But the crushing fatigue and weakness, no magic bullets yet...

Thank you for keeping us informed of your experiences. It does help so much to read them!

Take care!
anncavan

Annie said...

I'm so sorry to hear of your crash too! I'm going through one as well and I'm crossing my fingers that you get the best treatment possible :)

Nicky Reiss said...

Hi!

Please forgive this less than personal comment - am trying to get the word out on this important issue for the ME/CFS community.

I've just sent this letter to a few doctors, psychiatrists, and psychologists whom I know personally. I urge you all to do the same. Thanks.

Dear Dr XXX

I know how busy you must be, however I feel this situation is an urgent one for hundreds of thousands of people across the UK and the world, and your specific contribution can help save many ME/CFS sufferers from the dangers of being falsely labelled as psychiatric cases and thus denied more appropriate medical care.

I urge you to write a comment advising against the proposed new category "Complex Somatic Symptom Disorder" in the DSM-5. Comments coming from medical professionals will hold far more weight than comments from others.

The proposed revisions are discussed here:
http://www.dsm5.org/ProposedRevisions/Pages/SomatoformDisorders.aspx

Their cautious wording sounds benign, but the end result for patients with a serious medical (not psychiatric) condition is far from benign. The most extreme case in the UK involved the death of Sophia Mizra who died of ME after being institutionalized in a psychiatric ward (see: http://en.wikipedia.org/wiki/Sophia_Mirza and also: http://news.bbc.co.uk/2/hi/uk_news/5112050.stm and: http://www.investinme.org/Article-050%20Sophia%20Mirza%2001.htm)

Please also read the letter from the International Association for CFS/ME commenting on the DSM-5:
http://www.iacfsme.org/

and especially the letter from Mary Schweitzer, which can be found here, the last item on this page:
http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/

Dr. Schweitzer's eloquence speaks for many hundreds of thousands of people suffering from ME. I do hope this will persuade you of the importance of also writing on our behalf. The deadline for comments is 20 April 2010. Please write now! The instructions for how to do this can be found here: http://dsm5watch.wordpress.com/dsm-5-proposals/dsm-5-proposals-sub-page-3/ under the item labelled: Important Alert to the CFS/ME Community

Please feel free to pass this message on to other health professionals.

Thank you very much indeed.

Casie said...

Hey I am bedridden almost 24 hours a day as well. I have been for 1 year and my mother has been for over 20 yrs, unable to do anything. I will follow this blog, please keep up all updated with your progress in Stem Cells and any other treatment. I am considering Stem cell as well. Praying for us all!

khenson said...
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