Friday, May 29, 2009

More Next Steps

My brain fog is back bigger and better than ever! The one positive thing I can say about the brain fog is my delight in finding things I forgot I had. I've made quite a few discoveries these past few days.

I spoke with my cfs doctor yesterday. Luckily it was right after I received an email with the announcement by Dr. Meirleir that he had discovered the cause of cfs so I had a chance to run it by my doctor. He was skeptical but asked me to send him the link. My doctor's office is in regular communication with Dr. Cheney and other top cfs docs. They hosted the Sonoma Working Group which consisted of all the top cfs docs around the world (as well as LLMD's) to put their heads together to try and figure this stuff out. I'm reserving judgement about the announcement until I have more information.

I'm to continue Valcyte for six more weeks. But if my mood worsens to stop it. We are going to try Lamictal to address the depression. Lamictal is an anticonvulsant that has been found to be effective against atypical depression as well as treatment resistant depression. It may also have minor impact on HHV 6.

Once Valcyte is done I'll start treatment for parasites. I've had intermittant upper right quadrant pain since my illness began.

There is an immune modulator coming out in the next couple months (no-its not Ampligen) that my doctor wants to try on me to see if we can ramp down the overactive immune system.

I also got a referral to a cardiologist for a tilt table test to be evaluated for POTS (postural orthostatic tachycardia syndrom). Link to POTS place here: Sue Jackson had mentioned this might be a possibility with me so I brought it up with my doctor and he agress. It's a bit strange to see a cardiologist for POTS because its actually a neurological condition but affects the heart.

The antibiotics, Mepron, and Valcyte have been rough on my body and it will be good to have these treatments behind me. I think I'm going to be focusing on alternative treatments next.

I have run across an interesting phenomenon in the cfs world. This world is centered around contact via the internet so maybe that accounts for some of this.

Chronic Fatigue sufferers often talk about judgements and criticisms from doctor's and friends or family members who don't believe them etc. I've encountered doctor's who don't believe in this illness as well as insensitive comments from a few people I know. But I have to say the most destructive criticisms and judgments have been from fellow cfs sufferers.

I've seen people on various message boards jumped on for exploring lyme or seeing alternative practioners or seeing western medical doctors. Everyone has their opinion. We criticize people who are healty for doing the very thing that we do to each other. Which is to criticize the way others are dealing with their illness. I think feedback is important and I don't shy away from that but I do take issue with harsh judgements and criticisms.

I have been criticized for exploring various treatments to improve my quality of life and I'm tired of it. I am on Valcyte because every doctor I have seen has recommended it based on test results. I have high titers to EBV and HHV 6-both are very destructive viruses. I have been seen by a rheumatologist, an immunologist, a doctor who specializes in treating this illness. All of whom looked at my symptoms and my test results and came up with the same conclusion-I have active HHV 6 and EBV. These viruses cause cancer, multiple sclerosis, viral myocarditis, and many other things. So I'm taking Valcyte to deal with the viruses. Do I like being on Valcyte? Absolutely not! Do I think its going to work? Who knows?

But you know what? As bad as the depression has been, at least in the back of my mind taking Valcyte has given me six months of hope. Sometimes it has been that tiny ray of hope that the Valcyte might help that has kept me alive. If that's the most I get from taking Valcyte for six months so be it. At least I'm alive. There are probably a couple people that are grateful for that.

So please, if a treatment that someone is pursuing is giving them a sense of hope, let it be. It might be the only thing keeping them going.


Renee said...

I found your post very empowering and also humbling. I know i asked you why you were still on Val. and though I did not tell you you should not take it, I wondered why you were when it was causing you so much depression...I am sorry if I added to the load you are carrying. You are right, we need to be supportive and not think we have the answers for others. Which in turn has given me insight into the fact that I did not list on my treatment plan that I use EFT to help me with the emotional end of my illnesses because I did not what to be criticized for doing a NEW AGE type treatment...even though it helps me!
I plan on being more sensitive to what I say to others AND less concerned about wha others think of my treatment plans also.
Your strength is coming out strong in this go girl~! And thank you for your honesty here.
I appreciate it very much.

cfswarrior said...

Hi Renee-

Oh no-I actually experienced your question coming from a good place. It made me think and really revisit why I was still in Valcyte in spite of the depression and side effects. It was a very valid and good question and I felt like it came from a thoughtful caring place. I like getting questions like that.

Thanks for your honesty about EFT. My sister has a friend who has found it very helpful.

Thanks for your support also. It really means a lot.


Renee said...

I am glad you found the question beneficial. And you are right, I have been concerned by all that you have gone through in the past couple months.
You remain in my thoughts and prayers.

Jozephine said...

I had a rant the other day about aggressive drugs and flaky therapies which I subsequently deleted. On reading it back it occurred to me that I was hardly in a position to judge, and it did come across as judgemental. I hope it wasn't me, and if it was, I apologise.

Anonymous said...

I thought this was an honest and heartfelt post. I think you are very courageous in trying out the medications and very generous for sharing your experience so that other sufferers can gain insight into what therapies there are. I'm a CFS sufferer with much of the same symptoms (similar severity) and emotional experiences (struggling with similar feelings of loss) of going through this illness as you, but I'm located in Japan and the approach to treatment here is basically take vitamins, tricyclic antidepressants, sleep medication and otherwise do nothing and wait. They don't offer Valcyte, or Amantadine, or Ampligen, or other antivirals here for treatment, and I've kind of been waiting on the sidelines to see if it would be worth going to the States for pharmacological interventions. In the absence of such choices in the meantime, I've tried a few alternative healing modalities. I've tried Chinese herbal medicine, which I can't tell whether it is helping or not (it is not hurting) - I'm willing to give this some time. I bought the Gupta AR DVD set and haven't found that it works for my fatigue, my main symptom, though it's helped to quell negative feelings surrounding being ill. I haven't applied myself 100% for six months, though, so I'll be interested in hearing your experience. So I'm basically stuck with pacing and antidepressants, and a year into this illness I can't say that I've improved. It's hard not to crave and seek a medical cure of some sort, even if it only offers marginal improvement in function. Here's to keeping hope alive. Thanks again for writing your blog. I'm sure there are a lot of people who follow it and are similarly grateful.

Pris said...

One of the reasons I left a cFIDS board I joined for a year in 2000 was the overwhelming negativity of so many of the members...this won't work, why are you doing that, nothing will work, or on the other side, why aren't you trying this..don't you WANT to get better? On and on. Who needs that? I hang only online now with people who don't criticize , who look for alternatives and who are supportive.

One suggestion would be is to ask people not to email you about treatment criticisms at all. I hope you're not answering such email or defending what you do. It's YOUR body.

One of my CFIDS friends has POTS, too, btw , and having that diagnosis has helped doctors treat her more effectively so it's worth covering the bases.

My good cfids doc closed his practice and I miss that wellspring of on the spot knowledge.

Don't let the naysayers get you down.

At Home on the Rock... said...

Hi Terri

I am most thankful for people such as yourself, who even though are sick themselves, take the time and energy to write about their experiences....what is working or has worked and what is not.

I have learned so much more through the reading of blogs than what any Dr. has told me. Even the one who finally dx me, gave me a prescription for some sort of low dose anti depressant and sent me on my way. No other info...nothing. The meds helped a bit with the pain...but that was it. (I have since stopped taking them and moved on to other things)

I have made progress (still a long way to go though) through reading and trying what others have tried. Sometimes I know something is not for me as I don't have *that* symptom....but then that's one thing I can cross off my list and move on to the next.

Or...sometimes I'll read an article about something that claims to do wonders and then I'll come across a blogger who has actually tried that. I can then discuss it with them for further insight, again deciding if it may work for me and my symptoms.

I too wish people would learn to be supportive and not so negative. Surely they would know not everything works for every person and just because they had success (or no success) with it, doesn't mean it will be the same for everyone.

I had not heard of this med you are currently taking (not even sure if it is available here in Canada or not) but am interested in hearing your experiences with it.

Please keep on sharing your experiences with us. It helps so much and I so appreciate all of your help!

Linda (in Canada)

Sue Jackson said...

Hear, Hear! Thanks for speaking out on a sensitive issue, Terri.

I hope I haven't been critical or judgmental myself (if I have, I apologize!) because this drives me crazy, too. I know I also warned you about the side effects of Valcyte because I wanted you to be aware of the downside, but I tried it, too!

The bottom line is that NO ONE knows how to treat or cure CFS effectively. There is no treatment that has been shown to work for many people. I try hard to keep an open mind, even though my tendency is to want scientific data behind any claims, because none of us have the answers, do we? If we did, we wouldn't still be sick.

I was glad to hear you're looking into OI/POTS/NMH. For most people with CFS, it's a huge contributor to our disability. It's treating an effect, not the root cause, but treating it can help a lot. Let us know how that goes. Just a warning that the tilt table test can cause a pretty severe crash, since it's designed to bring on OI symptoms, so be prepared for that.

It's great that you have some knowledgeable doctors to talk to about CFS. I had the same reaction to the news form Belgium (was it Belgium?) last week - cautious optimism - I;m also curious to see what our experts in the US think.

Let us know how the tilt table goes.

Oh, and can you tell me the name of the new immune modulator coming on the market? I've been looking for one for years and couldn't find a doctor willing to prescribe Immunovir (which has been approved and used in Europe and Canada for decades but not in the US). Thanks -


Shelli said...

Really, can any of us cast stones at those who grasp at straws hoping to get better? If someone gave us rat pee and told us it would cure CFS, wouldn't we try it? How many snake oil cures have we all tried thinking this might be the miracle to make this STOP? I think you owe it to yourself and those who love you to try anything that may help you get better. I think your course of treatment is up to you and your doctor. I appreciate that you are willing to share your attempts with the rest of us, because we are waiting and watching and if this works ... well, could it also work for me?

cfswarrior said...

Thanks everyone for your comments and support. Just to clarify my post wasn't directed to anything anyone posted here at all. In fact I find your comments quite helpful, timely, supportive, and mostly just exactly what I need to hear.

Sue-I'll let you know the name of the immune modulator next time I talk with my doctor. The only thing I know is its a nasal spray that has the initials VIP and is due out in the next couple months.

Sue Jackson said...

Hey, Terri -

I saw a new research study published today and thought of you. It basically shows that taking large amounts of probiotics can help ease emotional symptoms, like depression and anxiety, in people with CFS. of course, probiotics have many other uses in CFS, too, but this is something new.

Here's the link (if it doesn't work or it isn't fully printed, just e-mail me)...