Tuesday, December 23, 2008


I think there have been very few times in the course of my illness that I have experienced this level of fatigue. It's indescribable. I have been a bit frightened by it at times. Who would ever have thought that fatigue could be frightening? It's such a benign sounding word and definitely not an apt description to describe what it's like. Fatigue is also a word that gets tossed around by people who are truly tired from the consequences of living in a culture like ours but to have it included in a description of an illness such as this does a disservice to those of us who suffer from it.

Laura Hillenbrand in an interview states: "The term chronic fatigue, she says, "is a terrible understatement. Fatigue is to this illness what a match is to a nuclear bomb."

I had to go the podiatrist today for a checkup on my toes. Three weeks ago I had to have part of the toenails removed on my big toes due to ingrown toenails which caused a staph infection and abscess over the summer. I was really worried about how I was going to drive back and forth from the doctor's office which is now about 25 minutes away. Luckily Daphne had the day off so she was able to drive me.

I started myself on antibiotics last week because my right toe was looking pretty funky. It freaked me out so much I didn't say anything to Daphne nor did I show it to her because I knew she would say we needed to see the doctor. Anyway, the funky toe was looking a little better today but the podiatrist was concerned that this was how my toe looked after a week on antibiotics. He did what I was afraid he was going to do which was to press a q-tip all along the side of where the surgery was. A little fluid came out. I did the right thing by going on antibiotics last week. This is something I don't believe in doing at all. I don't believe in the use of antibiotics unless absolutely necessary. Because I was on them for 5 months and it affected my gallbladder the last thing I wanted to do was go on them again but I had a strong, strong gut feeling to just get started on them. I'm learning to listen to that feeling more and more. I think it's vital.

I've started reading a couple Jungian books. I've been wanting to read Answer to Job for a long time now so I started that last night. Unfortunately Jung is an often misunderstood figure. He is brilliant and includes philosophy, religion, alchemy, mythology, imagery, poetry, different cultures-all in an effort to understand the psyche. Although it's a struggle cognitively, especially since getting sick, reading Jung feeds my soul.

The only problem is that things don't stay in my head the way they used to. I'm hoping that will change with continued treatment and rest.

I've decided to start taking Hawthorn Extract for the chest pains I've been having. I don't have any other cardiac symptoms thankfully. I fear that the move (I lifted too many things in an attempt to be helpful) put a strain on my heart and think it's a bit more inflammed. Hawthorn berry or extract is supposed to help heart problems.

I see my new doctor on Monday. I'll ask for a referral to a cardiologist. I don't want to but I think it's important. My heart is also racing at night again so some thing's up. Most likely it's the virus/s. It did this when I first got sick. I don't feel too much anxiety about it. Many people with this illness have heart issues. In fact, Dr. Cheney believes that cfids is something the body develops as a way to prevent heart failure. I don't believe that particular theory but I do believe other stuff he says about the heart.

Some people's heart issues have cleared up with the use of antivirals. People who have heart issues from lyme find it clears up with the right antibiotic treatment.

I'm trying to gear myself up to start Valcyte. I figure I'll start the second week in January. That will give me about a month of being out of the moldy place. I need to get my body to a little bit of a stronger place before starting Valcyte. I'm too weak right now. I ordered a couple immune boosters (Proboost and ImmunoPro) to start taking.

I don't know that taking Valcyte is the right thing to do. Hopefully I'll get some sort of gut feeling about it. There's only a 50-60% chance that it will help but on the other hand there is a 50-60% chance that it will help.

I have a severe case of this illness. At times I think given how disabled I've become from this illness how can I not try it.


Paula said...

Terri -
I too, have heart symptoms - sometimes it feels like I'm being stabbed, other times it's a dull achy feeling like I pulled a muscle. Takes about 2 days to go away. I also have occasional flip flops and racing. I had a severe case of racing/pounding last Friday and I am still trying to bounce back from how draining that way. Is the theory it's the virus or could it be Lyme or both? I am not diagnosed with Lyme (according to Western Blot) but I wonder.. I have high EBV titres and my HHV6 they said wasn't high enough to warrant Valcyte - so I am on Famvir for about 2 weeks now.
Thank you for creating a community to contact someone else going through this. It is so lonely and scary sometimes. Happy Holidays to you and good health in 2009!

Renee said...

Hi Terri
I also have had that horriboe fatigue and there is no other word to describe it besides frightening. I feel like if I lay down and give in to it I will never get off the bed again....but of course it is exactly what my body wants me to do...
Listening to you gut or what your body is saying ~ I have been relying alot on that the past year an I, too, have learned it is vital to do so. I went to Tom Oates site and made a copy of his 12 steps...
So glad your toe is better...
Have a peace=filled Christmas.

cfswarrior said...


Yes-the dull achey chest pain. Sometimes it's a bit disconcerting. Lyme can affect the heart as well as EBV, HHV 6, and other viruses (Parvo Virus B19).

What were you titers to HHV 6 (if you don't mind sharing). I wonder if the severe case of racing heart you had last Friday might be related to Famvir. If so, it's a sign the Famvir might be getting at a virus.

I agree this illness is lonely and scary sometimes. I'm glad you're stopping by my blog.

I wish you peace and good health in 2009.


cfswarrior said...

Hi Renee-

I'm so sorry you're experiencing this level of fatigue too right now. It's no fun and it is frightening.

Did you start or have any change in your lyme treatment recently? I'm wondering if you're having an intense herx compounded by this weird cold weather spell that's hit the U.S.

Much peace to you tomorrow. I hope you are able to spend time with your family.


Maya Jewell said...

I have had some heart symptoms as well, though rarely. Chest pains and that weird flip flop Paula described.
This disease is truly horrifying, the more I learn, the more I believe it. I remember reading the suicide stat you mention in your profile, but I can't remember where. Do you happen to have it handy? I told a friend this, and wanted to back it up.

Paula said...

Terri and all- Merry Christmas - I am home sleeping while my husband and son are partying at his sister's house. I wanted no part of it this year - napping for hours today. They all think I am a head case..

Anyways - my HHV6 level was 1:160. I still can't believe EBV would explain all the weird neuro symptoms I have. Out of the blue I can cry for no apparent reason other than it feels like a "release" or as you have wrote a "cry of the soul". I don't know what to do to help it!!!!! I keep asking for a sign to tell me how to heal deep seated issues and it seems like "no one" is listening. I am on my own. It's a miracle we all persevere as we do...

Heart issues are very scary - That's actually one of the first symptoms I had with this 7 years ago - along with "air hunger" and anxiety attacks at night.