Tuesday, May 26, 2009

Update and Next Steps....

I'm taking advantage of my fairly good mood so I can blog. The past couple weeks have been filled with a dark relentless depression. I wake up feeling okay but within two hours of taking Valcyte my mood plunges into the toilet. The depression in addition to the cfs has been crippling. Sending emails, making phone calls have felt impossible. When I'm like that I'm in the grips of Eeyore who's theme is "what's the point" "why bother."

Yesterday I paid close attention to my thoughts as my mood plunged and they were all focused on this illness. This is what the "blue meanies" tell me when I'm depressed: "you'll never have any improvement" "life is meaningless because I'm ill" "you'll never get better, have any peace, find acceptance, etc..." "you'll probably only get worse and end up bedbound" "you got sick because ultimately you're a bad worthless person who has no use in the world" "you have nothing to contribute anymore to why go on living" or "you're just a burden to everyone now." And the days are spent just trying to survive my mind. I haven't been able to blog because I didn't want to involve others in my pity party.

I realize some of this is part of the illness, some is Valcyte, and some is trying raise myself out of the ashes of my old life. I was reading something written by Emmit Miller, MD. He wrote a new book whose name escapes me now. But in the book he talked about the inner voice of healing. This inner voice can get trampled in the throes of trauma, depression, etc...I'm trying to reconnect to that inner voice.

I've been reading a little here and there from the book "Finding the Way Home: A Compassionate Approach to Illness" by Gayle Heiss. I'm finding it very helpful.

As far as updates I've been on Valcyte for 4 months and one week. I will be glad to finish this experience. In many ways it has been bad for my soul and spirit. I don't know what good its doing for me physically. The past couple mornings upon awakening I've told myself I'm taking a break from Valcyte but I get up and take it anyway just in case its doing some good.

Awhile ago I wrote a post and then deleted it (and then did the same thing again on Friday-another symptom of the depression) but Jo made a great comment about the differences between the UK and US regarding treatment for this illness. I saved it but have so many emails in my inbox because of all the groups I'm on that its a bit overwhelming to find it. I was struck by her comment and it has stayed with me but it highlighted for me how drug focused we are in this country about finding a medication to fix the unfixable. Forgetting for a moment the horrendous attitudes that take place in this country and the UK towards me/cfs one thing the UK has done correctly is helping people focus on pacing. Truly pacing is the only proven method for dealing with this illness. Cort Johnson mentions this in his reporting of the IACFS/ME Conference in Reno: http://aboutmecfs.org/Conf/IACFS09Behavioral.aspx

One of the poster presentations was by a man named Ashok Gupta who recovered from this illness. His was viral in nature. He developed a program called the Amygdala Retraining Program and runs a clinic in London. His theory is that the amygdala, a structure in the brain, is overactive and responsible for maintaining the symptoms of me/cfs. He has developed some powerful techniques to "retrain" the amygdala. I've decided to try his program. I really need some help in calming my overactive nervous system down and I think this can help. He says it can help 85% percent of patients. I've ordered the program and am looking forward to receiving it in a couple weeks. I will report on my progress with the program. He asks that one commit 100% to the program for 6 months. So that's what I plan on doing next.

For the past year I've been treating pathogens but haven't had a lot of improvement. Along with the Amygdala Retraining Program I will also consult with an ND to get my hormone levels back to normal. This is something my current cfs doctor seems to be weak on.

I've had enough of treating pathogens. The "you have to feel worse in order to get better" philosophy is getting old to me. I don't want to spend the rest of my life in a herxeimer reaction so I'm taking a break from chasing pathogens. No one knows what causes this disease much less how to cure it.

I want to stop the Valcyte. I think my body is telling me to. But, unless there is some indication not to, I will continue it for the next 54 days. If someone were to ask me if I thought they should try Valcyte I would say no (unless they were young). The data just isn't there to support trying this drug which causes horrible side effects. I did a rough poll of various message boards where people had tried Valcyte. I would roughly estimate that less than 30% have improvement. There are many other ways to treat HHV 6. Really though I think the body's nervous system must be calmed down and then work on building the immune system.

I feel a little hope today. Not because I'm going to be cured. I've given up on that (which isn't a bad thing). I feel hope because maybe I once again believe I can still create a life that is rich and meaningful.


Anonymous said...

Reading your second paragraph was like reading a journal entry of my own (except that I don't keep one because I don't want to revisit this crap in writing, it being in my head is enough!).
Thanks for expending the energy to write this blog so that the rest of us don't feel quite so alone and crazy.
I had been considering trying to find a doc to do the Valcyte thing with. I think I'll pass for now. I am seriously considering Gupta's program. Committing to 6 months is pretty damn unrealistic for me, but you don't know if you don't try.
Hang in there, thanks for sharing, and looking forward to your amygdala experiences.

Renee said...

I know 3 people quite well through an online support group and they have used the amygdala training and swear by it. They believe it has helped them greatly with the flight or fight aspect and pacing, etc. I had just told my husband today that I am ordering it!!!
I really hope you find it helpful and I hope I do too. I am so ready for this anxiety part of this illness to let go its grip.
On another note regarding the V. drug...why do you want to keep going with it?
I heard echos of my own voice in your post today. So glad I read it.
Wishing you better days ahead

cfswarrior said...


Thanks for reading my blog and taking the time to comment. This blog and people's comments help me feel not so alone and crazy.

I would wait on Valcyte until Dr. Montoya's study is published (if it ever will). I think it's telling that over one year after he completed his second study on Valcyte that he hasn't published the results.

I figure six months will go by whether I commit to the Amygdala Retraining Program or not so I might as well commit myself one day at a time. I did the same with Valcyte...

I'll keep you posted on the AR Program.


cfswarrior said...

Hi Renee-

It's great to hear that you know three people who have tried the Amygdala Retraining program have noticed improvements!

I hope we both find it useful. I have a feeling we will especially since we both experience anxiety and that heightened nervous system symptoms. I'll look forward to reading about your experience on it. We can compare notes about it too.

Regarding Valcyte-I think the only reason I'm continuing it is "just in case it works" although in my heart I know its not doing much. Its time for me to come to terms with that. If I'm still the same in three weeks I'm going to stop it. Sometimes I think I'm continuing it just to please others.

I wish you better days ahead too.


linda said...

I am glad you posted ...I doubt I mentioned this to you about valcyte and my reasons for quitting, other than I didn't get better... but my mental symptoms became so much worse on valcyte, they became intolerable. I have a mental illness separate from CFS and FM and and and, not that it matters what it is, and I noticed I became psychotic with worsening depression as well as sleeping problems where I would be trapped in nightmares that I could not wake up from (hypnopompic state)... this went on for a few days and then I did some research and discovered that montoya had disqualified ALL patients in his program with established mental illness!!!! nobody, including my fancy doc, knew this and if they did, they didn't tell me...I almost sued my doc as well as my shrink after this but in the end, decided it would only make me sicker and I would probably lose besides...so long story short, if you are depressed, you will probably notice it will worsen as you continue...I don't recommend you continue with this symptom as it is worsening, if I read you right...it may manifest as other problems as time goes by because valcyte definitely messes with the brain! if you do enough research, you will find this documented and if I remember right, the man you mention who stopped blogging had several mental symptoms forcing his hand as well as not getting better from his CFS.

on the other hand, I am glad to read about this program by gupta and I look forward to your experiences and impressions of it before I invest in another perhaps wild goose chase trying to "get over" this damned illness...I am in a flare right now so am not in a good mood about it all but do feel some hope knowing there are some who are continuing to think out of the box and , of course, it would be in the UK or europe....forget the US, we are in the grip of the bigdrugcompany syndrome and that about seals the deal for anything NEW and IMPROVED!

anyway, blessings to you as you continue onward with this...I know how it is, hear you behind your words and also hear, with a bit of hope, there is more....keep on blogging so we can all learn from each other.

Jozephine said...

I laughed out loud at the Eeyore comment. My daughter and I have a code for when either one of us is suffering from the "black meanies" (I call them) - we quote Marvin the Paranoid Android. "Life, don't talk to me about life."

When I commented on your deleted post I think I made an analogy between cancer sufferers going through chemotherapy and CFS sufferers taking drugs like Valcyte. We are so ill we will try anything. But who really benefits? Usually it's the drug companies.

Amygdala Retraining sounds a bit like Mickel therapy, Lightning therapy, Reverse therapy etc. Lots of folks swear by these new therapies and I don't want to detract from anybody's good experience. However, I would say that they sound really plausible and you have to hand over a load of wonga. Some people are making good business out of CFS, and that really pisses me off.

Yeesh, I could have written a whole post by now.

Have a better day :-)

Pris said...

I've seen the best feedback for help using pacing than any approach in a long time. I'm glad you posted. I have a rebound of a bug I caught so I'm going to 'pace' myself, tell you I'm pulling for you and go lie down.


cfswarrior said...

Hi Linda-

Thanks for the info about Montoya screening people out who had mental illness including depression. This is such important information!

I agree about learning from one another. I think we patients have more knowledge about what is going on than the docs treating us!

I tried finding that blog again but it looks like it was taken down. I remember the man writing that Valcyte killed his spirit.

Bigdrugcompany syndrome is a great phrase! I saw a doctor once who was late because he was meeting with a drug rep. His office was filled with "freebies" from the drug companies. I never returned as it was clear who he was allied with.

Its always good to hear your input.

I hope your flare passes quickly.


cfswarrior said...

Hi Jo-

I'm glad you enjoyed the Eeyore comment. I've not heard of Marvin the Paranoid Android! Great quote! I'll have to look him up for future reference....

I don't know much at all about Reverse Therapy or Mickel Therapy etc...On Ashok Gupta's website he says that his program is not these things. I'll keep you posted (no pun intended).

Feel free to post here anytime! :)


cfswarrior said...

Hi Pris-

I was checking your blog and started to get worried so I'm glad to hear from you.

Thanks for your support. It means a lot.

I hope the bug passes really quickly.


mojojojo said...
This comment has been removed by the author.
cfswarrior said...

Hi Joey-

I sent you an email. I look forward to hearing your thoughts.


Sue Jackson said...

Terri -

I'm sorry to hear you're still struggling so much with depression - I also believe that at least part of it is the result of CFS and/or the treatment.

I'm as guilty as anyone of looking to pharmacological solutions. My logical, analytical side (which is dominant!) tells me that this is a physical illness that should have a physical cure. But, of course, we're not there yet, are we?

I have gotten some improvement from a combination of anti-virals (Valtrex and Famvir) plus low-dose naltrexone - they improved my functioning by about 10% which translated to a pretty good improvement in quality of life.

I'm very curious to see how the amygdala thing goes - please keep us up to date. I get so frustrated that the main approach to treating CFS is pacing - it seems to me to be a message of we can't fix the illness, so you have to change your life to accommodate it. I know that's not all there is to it - it's just my scientific side again, wanting a scientific answer.

I wish you strength in dealing with this depression. Don't ever be afraid to write for fear of sounding self-pitying - everyone in the CFS blog community understands - we've all been there ourselves!


cfswarrior said...

Hi Sue-

Thank you so much for your response. Its hard not to judge myself when in the midst of depression.

I do believe that antivirals and pharmacological interventions have an important place in treating cfs.

I wish there were more information about the different subsets. It seems like we have to figure out which subset we are in and then try treatments that address that.

I would take 10% improvement in functioning anytime.