Thursday, January 1, 2009


I think one of the most challenging parts of this illness (and there are many) is one of maintaining hope. I don't know how to do it. Maybe I should shoot for acceptance.

If I can't have my health back then at least a sense of meaning and peace.

I don't feel as grim as I did yesterday (back in 2007). I'm grateful for that. I had a couple strange dreams. Prior to falling asleep I found myself deep in a sense of despair. I thought to myself well, if I'm not going to feel better and I'm housebound then at least I'll look into medical marijuana.

I dreamt that I was at some sort of bar like place only it wasn't a bar. The guy was talking to me about pot and showing me some new kind that was a tan color-sort of the color of Carmel. It could be stretched like taffy. Although in my dream I didn't want to start smoking pot I found myself intrigued by this new form of it. Suddenly the dream shifted and I realized that I'd bought $253 worth of pot. Only it wasn't buds or plants, it was in all these different forms, and shapes. I was really happy with my purchase and that I'd gotten a deal (no pun intended). It was almost like a rock collection(which I had as a kid, along with a coin collection, map collection, book collection, chemistry stuff, etc). The dream made me happy. I think having it had something to do with a shift in my mood.

In the other dream I realized I still had a lot of work to do (or more than I thought). I thought to myself as soon as I can get this depression to lift I'll get back to it. This could be a hopeful dream in that I still have work to do and it's not over. Because I associate depression with fatigue I think my dream might have been talking about not only the depression but also this illness.

I always feel like I'm on the edge of falling into that depressive pit. I remember talking to Dr. Kliman a couple months after I was diagnosed (he was asking about depression) that I was surprisingly not depressed. I've learned since then that depression can and does accompany this illness for a couple reasons. One is the stress on the body due to being ill for so long causes important chemicals in the brain-dopamine and serotonin mostly-to become low creating a depression induced by illness. Then there is the circumstances of being ill-the grief that accompanies it-with all the loss there is to bear.

So there is a double whammy of depression-both are very powerful. I'm sure too that the brain inflammation doesn't help. It's unfortunate that the depression experienced by people with this illness gets mistaken as being the "real" illness when in fact it's secondary. To complicate matters is that because there is an injury to the brain from whatever pathogens/toxins/bacteria are at play, it can create a sensitivity to medications making it hard to tolerate the side effects of anti depressants. People with this illness are often quite sensitive to medications.

Regardless, the other decision I made last night was that I was going to go on anti depressants. Dr. Kliman had prescribed Prozac (which just made me agitated) and then Wellbutrin (which made my anxiety high and my heart race) just for the purpose of trying to energize my body. I'm willing to try again but this time with the purpose of trying to avoid the depth of depression that I've been sinking to.

I'll call my csf doctor next week and ask him to write a prescription for something.

We'll see.


Paula said...

Please please please give Zoloft a try. I would be in a pit of despair if I didn't take it. And I hate meds and usually can't tolerate many of them - but this one for me has been a life saver. There were a couple of weeks in the beginning of side effects, but they did go away. Just stick with it!! It will be worth it. I figure, you get one life to live and we should do whatever it takes to enjoy it as much as we can - it's just like needing glasses.
Now, there could be dozens of replies to this yelling at me for suggesting a specific med as I am not your Dr., but I just wanted to mention what has worked for me. And I only need 25 mg - much less than the 50 or higher dose that is recommended.
We shouldn't have to suffer any more than we already are..

cfswarrior said...

Hi Paula-

It's good to know you've had success with Zoloft (and a small amount at that). It's helpful for me to know what medications work with people who have cfids.

I so agree with your statement that we shouldn't have to suffer anymore more than we already are.

Thank you.

Pris said...

Most of my cfids friends are on an antidepressant, some of them for sleep. I never could tolorate any of them, even at one milligram, but I'm not a good example since I have side effects to nearly every med in the book , driving doctors nuts. St Johns Wort made a big difference for me, so know there's an alternative if you simply can't handle them. And yes, everyone is different in their reactions to antidepressants. It's actually common for doctors conversant with cfids to start sometimes at five milligrams because of oversensitivity problems.

Aylwin said...

Hi CFS Warrior, I'm Aylwin, a 22 year ME survivor. I totally agree with Pris, I cannot take those drugs at all and I am very much like her with meds in general - very common in ME. And St' John's wort is a safe and effective herb for many, with less side effects. It is what is prescribed 95% of the time in Germany (where the HCsystem is quite enlightened) for depression, and the pharma ones only the 5% with very severe D. that it doesn't help. Its for mild-to-moderate depression, and if you are standing on the edge of it , it can be just the ticket, and very easy to find the right dose with a tincture. As soon as thopse Blue Meanies start to circle me, I just take it for a couple of weeks and I'm sorted. There are lots of herbs too that I can't handle, so I'm grateful for it. Never lose hope, you never know what's around the corner!You TC, Aylwin

Paula said...

I also take klonopin (and that's it besides the viral med ) and it has been a life saver as well. I think it has mood enhancers in it too, but my main issue has been anxiety first, depression 2nd. Anything and everything would set me off and I'm super sensitive to many environmental things just like Pris said. I have startle reflex to the smallest sounds.. it's so weird.

Does anyone know if St John's Wort works for anxiety as well?

Anonymous said...

you may want to try lexapro; you can take a small 10mg dose. i was on zoloft for 2 years and it stopped working. I have me/cfs for some time but was finally diagnosed last summer. am very sensitive to side effects, and can happily say i don't have them with lexapro.

i tried SAM-E but I just plateaud and ultimately did not work for my depression after a month or so. st johns wort did not work at all. we are all individuals with unique responses, and conventional medicine is just coming to realize you'll need to test out whatever you decide to take.
good luck! be well!

Renee said...

I have been reading your last few posts and as usual find them very deep and honest. I want to tell you that you have been in my thoughts with all you have been feeling, and welcome to 2009....sounds like 2008 was a good year to skip, anyway Terri! (GRIN)
I have not been able to tolerate any meds myself and anything I take as a supplement, and even my antibiotics I must start at about 1/4 the dose. St. John's Wart is a good herb for depression. I know of a few who have taken it with good results...but you must get a good steady brand ~ I believe GNC is one of the most consistent....lots of things to look at I am sure you and your doctor will come to the right choices.
Back to you last posts...may 2009 bring you an improvement in your healing journey.

Aylwin said...

Hi All and Paula, yes, St. John's Wort does have some effect on anxiety as well, and there are other herbs, like Valerian, but I cannot tolerate them! I too, like Paula, have finally discovered the Klonopin, and it has made a huge positive difference for me. It is especially helpful to control the reactions to overstimulation (like your startle reflex) that can be so overwhelming. But, as Anonymous said, it is never the same thing for everyone and what works for one does not for another. so yup, you do need to experiment, and hopefully have a doc who will support this. The other drug that has helped me so much is the Neurontin (Gabapentin), I do believe that a lot of the mental (not necessarily emotional! - I mean the confusion, overstimulation, etc.etc.) is as Cheney says, a kind of seizure-state in the brain, and the Neurontin makes my brain function as well as the disautonomia so much better. You all TC and here's to a better 2009!! Aylwin

Pris said...

First of all, check my blog at I refer to your blog in it. I export to facebook and have had a lot of positive response there. If I can figure out how to share them, I will.

Klonipin was the med that changed my life for the better. It enabled me to tolorate so much more stimulation and stopped the spasms I would get in my hands so badly at times that trying to bring a forkful of food to my mouth was almost impossible. That and other changes do speak to the anti-seizure properties of the med and its positive effects.

I'm looking into transfer factor now. My former immunologist tested me regularly and confirmed that the T cells that respond to allergies, medicines etc were in a continual over-reactive state and the T cells that work in our favor, the ones that produce the NK (Natural Killer) cells were low. A friend of mine knows Charles Lapp. His research has shown that transfer factor increased NK cells by ten fold but he didn't get reports that his patients felt better. Cheney, however, was more enthusiastic about its use in smoothing out the immune system. I'm still considering it. As time goes by, I evaluate things a lot more carefully before I try them, both because I react oddly to supplements as well as to meds, and because the money adds up.


cfswarrior said...


I may try St. John's Wort. I take 14 drops of Doxepin for sleep. It's good to know to start very low on starting medications.

cfswarrior said...

Hi Alwyn-

I like how you put it-"a 22 year survivor..." How have you managed to do it? I agree about the HC system in Germany. They are far ahead of us. It's good to know they believe in St John's Wort. How long does it take to work? That's a good name for them "the Blue Meanies." It's exactly what they are.

cfswarrior said...


I'd forgotten about Sam-e. I've heard of Lexapro. The side effects haven't been bad? Have you started or tried any sort of treatment since you've been diagnosed?

cfswarrior said...


How are you? You are in my thoughts as well. It's good to know about the GNC brand. I think I'll try to get my hands on some today if possible. It's always good to hear from you.

cfswarrior said...


I take neurontin and klonopin but only at night for sleep. Whenever I haven't filled my rx for the neurontin in time and had to go without for a day I really noticed a difference.

cfswarrior said...


I left a note on your blog. Your post moved me to tears. Thank you for "seeing" me. Those of you who have lived with this illness for awhile are my guides and mentors right now. I'm just at a loss for how to cope with this anymore.

I've heard of transfer factor. I read about it being used with some success. My cfids doctor is wanting me to take Valcyte but I'm reluctant to (although I'm getting it free with patient assistance-I have yet to take any).

Aylwin said...

Morning! How have I managed for 22 years? Hope - that's it, that's all, and that's why I won't allow those Blue Meanies to get me for long!I always and still think (if idiotically at times!)I will get improvement if not a cure, sooner or later. Occasionally I allow myself a "funk day" when I let all those monsters of fear out of the bag and let them play...then they are ready to be put away until I need to do that again! Also, I had 2 kids to bring up, so that kept me going somehow.

I also take the bulk of my Neurontin/Klonopin at bedtime, with a smaller dose in the afternoon when the symptoms amp up.
It has made a huge difference to me over all, and especially with the overstimulation aspect. Now, I can go out for a wee bit (if & when up to it!) without getting totally muddle-headed from it.

The St. John's wort works within a couple of weeks in my experience, and as with all drugs/herbs/supps, start very low and titrate up - easy to do with a tincture.

I've heard that the Valcyte can have amazing results, if it's not the easiest to tolerate - if you have diagnosed infection of HHV6 anyway!

And they are finally going to approve Ampligen, which helped so many in the early 90's and then just disappeared, who knows why.

Good to have found you! TC, Aylwin xox