Friday, October 31, 2008

A Scary Halloween

There are many thoughts floating around in my head. Hopefully I'll get to all of them before they leave.

I woke up out of a bad dream. There are days like today when I wake up to this awful depression. It's like waking up to another stark day of laying around in the uncertainty of chronic illness. I just don't have the tolerance for it.

Lately I've been having this dull achey pain in my lower right side. I've had it before. I had it in the summer of 2007 when Kaiser was running all the medical tests. I've also had liver pain too but my liver values are normal. Anyway, I dreamt I went to see two doctors-both partners. I think they were women ob-gyn's. The one I saw also had CFIDS. I was glad to see she was able to return to her practice but she told me she always felt tired. She went on to tell me that I would be forever tired and that I had ovarian cancer. I woke up shortly after that in a funk. On days like these I find myself unable to find any reason to get up and start another day of taking supplements, giving myself shots only to have the same result. But I do anyway. I get up and I take everything I'm suppposed to take.

My mood didn't change. I checked my email late in the day and found that I had been nominated for the Kreativ Blogger Awared by Renee. I was moved that someone both read and got something out of reading this blog. Tomorrow when I'm less sleepy I will talk about it more. The timing of it was perfect. It got me out of my depression. But more importantly was feeling a sense of connection with someone else who suffers from this. This sense of connection is very important to me.

Tonight I went out with Daphne, Bill, Lindsey, and Ella (both of whom are adorable, wonderful kids). Upon leaving the apt I knew something was wrong. It felt like I was about to have vertigo or that things were going to start spinning but they never did. At times it felt like the ground was going to shift sideways but it never did. I decided to keep going anyway-I wanted to try to enjoy Halloween. We all walked for awhile. I was having a difficult time in this strange anticipatory mode of how I would handle it if the ground did suddenly shift or things did start spinning. It was a strange and frightening sensation. Between that and trying not to step on or be stepped on by anyone made me tell the group I needed to bail. Daphne drove. She decided to stay with Bill and the kids. Against my better judgement I turned around to head back to the car. Destination unknown. I couldn't remember where the car was. I was disoriented. I kept walking with a growing sense of unease. It was dark. There were lots of people. All I knew was to stay on San Antonio. I kept feeling a sense of relief when I would come upon a familiar looking house knowing I was on the right path but just not having a clue where the car was.

I could not find the car though and started to feel a sene of panic. I had to calm myself down because I knew I would pass out if my adrenaline started going. I was already feeling woozy. I did not have my cell phone. I ended up walking through the streets lost and in tears. Finally I found the car. I sat there for a moment shaken by the experience. It was like being in the Fun House at the fair where the rooms are all mishapen. Except it just wasn't very fun.

I got home and immediately started researching neurological diseases. This is a fairly new symptom for me. I've had dizziness. I've had short bouts with feeling like things were tipsy but not for an extended period. I assume this is part of CFIDS. Maybe it's part of how HHV6A manifests. I don't know anymore.

I want my mom.

Thursday, October 30, 2008

Annoyed Beyond Belief

The search for answers continues. So does my frustration with the medical system. My RNase L panel came back. This was supposed to be the definitive test that my doctor was going to use in determining whether or not I would start Valcyte.

There's two parts to the test. One was normal. The other was a little elevated. I have no idea what it means but it certainly doesn't show an active viral infection. It shows my immune system is dysregulated. It turns out my doctor also wanted an elastase test done too but his office screwed it up so it wasn't done.

I got results back from bloodwork ordered by my insurance doctor. Blood glucose was at 95 (99 is high). My white blood cell count continues to climb and is just below high. IgG EBV was 1600 +. Normal is less than 100. The lab ran the wrong tests so 2 important tests weren't done: HHV-6 and chlamydia pneumonia.

In the meantime I'm having pain in my liver area. It's driving me crazy.

There might be a mold problem. We found mold behind a layer of some plaster type thing that was started to peel underneath the window in the bedroom. That plus the high mold count in the petri dishes could indicate a mold problem. Given that I have the multi susceptible genotype it could mean I have mold poisoning. With this genoty pe my body doesn't recognize the presence of mold toxins so they just continue to build up in my system eventually wreaking havoc with my immunce system.

I've about had it with my CFS doctor. I'm tired of him ordering 1 or 2 tests each month. I want aggressive testing. I'm looking for another CFS doctor here in the area. Hopefully one covered by insurance. I'm less than impressed with my doctor. Or maybe he's just someone to be angry at right now.

I just can't believe with all the tests I've had that, although there are clear abnormalities, still no direction in treatment.

I sent away a sample of the mold to be analyzed by a lab. Hopefully that will come back soon.

I'm sick of doctor's, medical tests, uncertainty, and sick of this damn illness. Something is really wrong and they can't find out what it is. So I'm back to searching online myself for answers.

Or maybe I just will get a medical marijuana card and medicate myself. I've been considering it. This whole mess is just getting old. At least I could have a few good laughs.

Thursday, October 23, 2008

October 23

I think that's the date isn't it? I spent the night tossing and turning. At one point woke up sweating. I haven't had a night like this in awhile. Today I have that agitated exhaustion. My body feels like a car who's engine is revving but has no gas or battery. It's exhausting and causes my anxiety to spike.

I had to prepare for my regular doctor visit. I'll call him my insurance doctor. I like him in that he's quirky but he's very dismissive of anything outside mainstream medicine. I do think he's a good doctor for the most part. He is the one who referred me to the rheumatologist where I got the lovely diagnosis.

Though he grumbled about it he did agree to order bloodwork for HHV-6, EBV, and Chlamydia Pneumonia (cpn). When I asked for the blood test for cpn he said dismissively, "everyone tests positive for that." First of all, I don't think that's quite true. Second, an smouldering infection like this in someone who's immune system isn't functioning, isn't a good thing. But he agreed to do it and I was glad.

He also chided me for being on Cortef. He doesn't believe in adrenal insufficiency-only Addison's. And he was quite annoyed when I told him my CFS doctor's thinking that people with chronic illness often have adrenal problems. He scoffed.

He was, rightfully so, annoyed at my CFS doctor for not following up on my TSH levels and tests for liver functioning and a couple others that he grumbled about. Clearly he doesn't believe there is ANY help for people with chronic fatigue.

He also told me the reason I've gained 30 pounds. Yes-30. I've never weighed this much. Ever, ever, ever. He said I've gaine the weight from taking the Cortef. I didn't bother to try to tell him that my brain is confused and that there are toxins that my body can't get rid of so it stores it in fat. Nor did I tell him my CFS doctor's theory that my brain believes my body is in a state of emergency and is doing things to protect it from shutting down.

But he did listen to me when I told him that lately my muscles in my back, back of legs are really sore and, that I've been waking up with them feeling tight and stiff. He ordered a CPK test. When I asked what it was for-he mumbled (which he does when he doesn't want me to ask more questions) oh, just some test for muscle tissue break down. I like that he can think outside the box sometimes.

He's also testing my kidney function. He wrote a prescription for Prisolec and believes I have an ulcer. He'll also test for that.

It's so interesting to be caught in the crossfire between a good mainstream insurance doctor and a good integrative CFS doctor. Both have their strengths and weaknesses and both can be equally dismissive of certain tests. For example, my CSF doctor should be following my Thyroid function but he's not. He also dismissed my complaint of muscle pain. This is an unusual complaint for me. I don't talk about a lot of things that happen with my body. When I do, it means it hurts and it's more than an occasional thing.

I'm glad I went today. I'll get the information I need to make a decision about Valcyte. Oh, and my doctor today was quite annoyed when I mentioned my CFS doctor ran a RNase L panel to use to determine whether or not I should go on Valcyte. He actually rolled his eyes and sighed. I chuckled to myself.

He ordered a Comprehensive Metabolic Panel, CBC, test for Heli bact, HHV-6, EBV,CPK, Chlamydia Pneumonia, and TSH.

The refill of Valcyte arrived today from Roche. This time they included a list of possible side effects. It was frightening to read.

I asked my insurance doctor what he would do. His response: "If I had refractory chronic fatigue syndrome the way you do, I'd take it."

Wednesday, October 22, 2008

Interesting Research Updates on CFS/CFIDS

It seems there are some hopeful happenings in the research community with CFS. I've copied something from Dr. Teitelbaum's website. It's exciting that 30 of the top researchers/doctors are getting together every year with the twofold purpose of finding the cause and finding effective treatments for CFS.

CFS & Fibromyalgia Research Updates—the Sonoma Working Group
By: Jacob Teitlebaum, M.D.

This issue will be devoted to reviewing some of the recent new research related to CFS and fibromyalgia. In addition, I would like to report on the 2nd annual meeting of the Sonoma Working Group, which was held September 24-28, 2008 in Sonoma California. This group is composed of 30 of the world's leading CFS researchers and clinicians. Each year we are brought together to compare notes and teach each other what we've learned. We have also been offered what may be the largest CFS research grant ever given, with our instructions being to explore the causes of CFS and to determine how to treat it effectively. I am honored to be the Chairman of the Protocols Committee for this study.

With 30 very bright and very opinionated CFS researchers, the sparks were flying—and everyone learned a lot! In this article, I am happy to give an overview of some of the ideas that I found to be most interesting.

Overall, there is a growing consensus that there is an energy crisis occurring in CFS and that many of the symptoms in CFS are actually the body's way of protecting itself when it can't make the energy it needs. There is also increasing agreement on hypothalamic dysfunction (like "blowing a fuse" ) being present. Research presented focused on several key areas. These included:

1. The causes of the energy crisis. This included studies on the role of infections in causing or perpetuating CFS as well as carbon monoxide sensitivity being a cause in those with MCS (Multiple Chemical Sensitivity) combined with light, sound and taste sensitivity. The talks included:

A. A review of mycoplasma and other antibiotic sensitive infections in CFS by Dr. Garth Nicholson.

B. Dr. Liv Bode presented the research done by a pair of German scientists showing that stomach Borna virus infections are very common in CFS, and often improve with the use of an old antiviral drug called symmetrel (amantadine), which is helpful in some CFS patients.

C. Professor Kenny DeMeirleir discussed the presence of Parvo virus infections in the stomach, as well as the role of bacterial bowel infections. He found that instead of the normal E.Coli bacteria present in the gut, large levels of lactic acid producing gram positive bacteria are present.

D. Dr. Joe Burrascano, noted Lyme disease expert, discussed the role of tick borne infections and extended antibiotic use.

E. Research in patients with Multiple Chemical Sensitivity in association with light, sound and/or taste sensitivity and a specific set of facial features that may be associated with carbon monoxide poisoning (requiring specific tests and which improves after 4 months of using oxygen a few hours a day). Click here to read more on this research by Albert Donnay.

2. What is the biochemistry that causes some people to get CFS and that causes the energy crisis in response to whatever triggered the CFS? This included work on:

A. Methylation Cycle Defects—This is research presented by Dr. Neil Nathan (a superbly knowledgeable CFS specialist) showing that the theories proposed by Dr. Rich Van Konynenburg, Ph.D and Dr. Richard Deth are on the mark. Although not placebo controlled, the study suggested that a mix of nutrients supporting “Methylation” can be helpful in CFS—especially those that have failed other treatments. I will be doing an article on a simplified approach to this protocol in an upcoming newsletter. In the interim, I have given the directions on how to do this protocol to some of the physicians at the Fibromyalgia and Fatigue Centers. Feel free to ask them about it, and they can contact me for more information on implementing it, or the details if they have not yet seen it.

B. Oxidative stress—There appears to be difficulty handling energy production using oxygen. Work by Dr. Paul Cheney showed that oxygen is actually toxic in CFS, and that many of the changes in CFS are caused by the body adapting to protect itself against oxygen toxicity.

C. Nitric Oxide (NO/ONOO cycle) issues—This is the research and theories proposed by Professor Martin Pall. Most of the treatments that would help this problem are already addressed in the “SHINE Protocol” we discuss in From Fatigued to Fantastic! (FFTF).

D. Cytokine (immune chemical) abnormalities, including TGF Beta 1. This included research by Dr. Ritchie Shoemaker, who developed the neurotoxin theory of CFS discussed in FFTF. He also took on the task of keeping us all intellectually and scientifically honest during the weekend.

3. The downstream effects of the energy crisis which then directly triggers symptoms. These included:

A. Research by Paul Cheney on the marked heart function abnormalities seen in CFS. He uses very specialized echocardiography to measure this, and documented toxicity when given oxygen. He showed research suggesting that bison heart growth factors applied to the skin may be a very promising treatment in the future. The heart problems were largely reversible or inducible—usually within minutes—as various treatments were applied.

B. I discussed hypothalamic dysfunction and the associated sleep, hormonal and autonomic dysfunctions (low blood pressure, sweating, etc.) caused by this dysfunction. This then can cause the hormonal, sleep and autonomic dysfunctions seen in CFS.

As you can see, our understanding of this illness continues to grow, offering new treatment possibilities!


Also, many of the leading LLMD's are finding that chronic lyme and CFS are linked.

And then there is the news coming from the Whittemore Peterson Institute about finding a diagnostic test for CFS that will may come out in the next couple years. Apparently there is rumor they have also discovered a new virus associated with CFS.

A Stroke of Insight

I'd heard of this book over the summer but didn't want to read it. One of my fears is having a stroke. I was afraid to read it because I didn't want it to increase my anxiety. Knowing I have some sort of brain illness is bad enough. Plus I saw how my grandmother changed after her stroke as a result of being in a car accident.

I was quite surprised to turn on Oprah to find a woman talking about her experience of having a stroke. It was riveting. I tuned in just as she was talking about how much her brain needed sleep to heal itself. I was fascinated by her story. I bought her book from Amazon and am looking forward to reading it.

Things are going okay with my experiment of letting go of the pressure to find a "cure." I don't feel in such despair. When it starts to creep in I find a way to change my thinking. It's not realistic to believe I'll never feel that despair again but one thing I'm realizing is the one thing I have control of is my attitude.

I'm still struggling with lots of symptoms. I decided to make an appointment to see my regular doctor to get some bloodwork done. I want to get my titers tested for certain viruses (HHV-6, EBV, Chlamydia Pneumonia, and other things). I'm also going to get my TSH and hormones tested. Though I like my regular doctor he is consistantly late by at least an hour. It's hard to wait that long when I feel this lousy. I'll bring a book though.

I'm noticing how important it is to protect my energy. I've become very sensitized to people who are energy sucks.

The RNase L panel won't be done until next week. I'm a little relieved as this will give me time to get the results back from tomorrow's bloodwork and make an informed decision about the next course of treatment.

Monday, October 20, 2008

Lauren Hillenbrand

I've decided to request another IgeneX test for lyme from my doctor. I want to see if the lyme has reactivated or not.

I need to stop focusing on the goal of getting better. Who knows how far off in the future getting better will be. Who knows whether or not that's in the cards for me. Statistically, the odds are in my favor-that is, if I get treatment for the right pathogens.

Worst case scenario if this is it, I need to find a way to live my life in spite of being housebound. I spend so many hours of the day trying to find answers. Part of it has an obessessive quality that lately leads me to a sense of feeling overwhelmed and despairing at the lack of ways to diagnose and treat this illness.

I thought about Lauren Hillenbrand who wrote Sea Biscuit. I haven't wanted to learn much about her mainly because I'm afraid that I'll identify too much. The severity of her illness frightens me. Tonight I decided to start doing some reading about her. I think I've maxed out my coping skills over this past year. I'm into year 2 of this illness. I'm finding the second year a bit frightening without my protective layer of denial of hoping that maybe extended rest and a few supplements will get rid of this. Unfortunately, part of me still held to the belief that a cure would be simple if not a bit long. I had hoped I would be one of those people that would spontaneously recover within the first two years.

Lauren Hillenbrand has brought me some hope tonight. In an interview she states, "No matter what happens with this illness I think it is possible to carve out a dignified and productive life from it." Here's more from an interview I read:

(Interviewer): What would be your advice for people who have been diagnosed with CFS?

It's such an individual journey. But what I would say is, no matter what happens with this illness, I think it is possible to carve out a dignified and productive life. This illness takes everything away from you, and you have to find completely different ways to define what your life will mean to you. But I think it's possible to make a good life. I have been happy in the time that I've been sick. It requires a real redefinition of everything, but I think it is possible to do.

(Interviewer): You sound at peace with your situation.

I wouldn't say I'm at peace; some days I really struggle with it. I have times of despair. When my vertigo came back and I lost the ability to write, it was a very difficult thing to adjust to. But I have learned to have very low expectations. I am not somebody who thinks I am entitled to good health or to a good peaceful happy life.

We are fortunate when we have them, but when we don't have them it's not that someone's taking them away from us. It just happens. [This attitude] has made it easier for me to deal with [my illness] than someone else who thinks, "Why me?" I've never thought that. CFS is definitely a very difficult thing to deal with. I go through times of real despair, but I pull myself out of it and keep going. I have no choice.


I read somewhere that she stopped focusing her life on trying to cure herself but rather decided to live the life she had. I'm trying to find out how she is doing now in 2008 but can't find any information.

I'm still alive. Maybe I can find a way to live with this and live a rich life at that. It won't be easy.

Thank you Lauren Hillenbrand whereever you are.

And thank you to, to Renee and Sue Jackson for continuing to visit this blog. And for all others who suffer from this. Though I'm sorry that you all suffer too it's nice to know there are others who are on this journey.

Sunday, October 19, 2008

I Wish...

I'd love to be one of those people that finds nothing but positive in everything. Feeling positive feels quite elusive these days as I find myself day after day back at square one.

I read Sue Jackson's essays and blog posts (is that the right term) about despair and other emotions that come up with this illness. It was really quite good. I recommend looking up the links she provided. There is also a book-shoot-I completely forgot the name but it looks good and I plan on ordering it from amazon or better yet-maybe the library will have it.

I'm feeling quite discouraged intermingled with intense irritation/agitation that feels beyond my control. I'm questioning my doctor's decisions. I want to be tested again for lyme. I want a second opinion. More than anything I want to have a sense of control over my life. Control is really an illusion when you think about it. I certainly thought I had everything under control. I certainly didn't expect this. And I certainly didn't expect to be dealing with this for another year.

I've been doing relaxation exercises while listening to my ipod on a daily basis. Today I didn't mainly because I'm having those feelings of "what's the point."

I've been doing a lot of research hoping to find some answers. I had a dream awhile ago where there was a pill that combined an antiviral, l-theanine, and an anti bacterial. I remember being really excited about this medication because it was going to help me. When I got up the next day I looked up l-theanine-I'd never heard of it before. It turns out it's an amino acid that has calming qualities in the brain and can even help boost the T cells in the immune system. Finding an anti viral that treats both HHV 6 and EBV is going to be the tricky part (other than Valcyte).

I emailed a doctor in New York (Dr. Enlander) about a study he is doing on HHV-6 and Valcyte. I was shocked to find a reply this morning. He said that Valcyte should be initiated for HHV-6 titers of 1:640 and above. Why doesn't my doctor know this?

Wednesday, October 15, 2008

3 AM

I woke up in the middle of the night last night with a sense of despair, loneliness, and feeling disconnected. As I lay there I found myself saying the words of the Serenity Prayer. I'm scared. It seems with this illness I develop new levels of being in relationship with it, if that makes sense.

The first 6 months at least was spent in denial intermingled with the grief I felt at saying goodbye to a career I loved. One that seemed to be finally taking off.

I thought getting good rest, eating better, taking lots of supplements would fix me. It didn't so I sought out the help of a good doctor. After 6 weeks of supplements that he recommended with no improvement we decided to treat lyme. For awhile I thought lyme and babesia were primarily what I had. Certainly I would respond to antibiotics and babs treatment.

Five months later, I still have little improvement. I had some but it has been swallowed up by this latest virus.

Now I'm back to trying to understand this illness. What is it? I'm finding myself having to come to terms with the fact that this isn't going to go away. It's not going to be fixed with the "right" treatment. While I may (and hope to) get better, hopefully much better, I'll never be the same.

I remember talking to a friend shortly after my mom died. She had lost her mom around the same age as I had but it had been 10 years. She said to me she still missed her mom and while the pain never quite went away, it did become easier to bear. I was overwhelmed by her words. I thought to myself I don't want to feel this much pain over the next 10 years. Now, 13 years later, her words ring true.

I'm trying to remind myself that I won't, or hopefully, won't be at this level of illness for the rest of my life.

A couple weeks ago I was searching for stories of people who had recovered from cfids. I came across Bruce Campbell's work. He said one of the things that helped him was he let go of the word recovery. He found that when full recovery was his goal that his entire mood rested on how he was doing physically. When he let go of that goal he found he was able to rest more easily-almost like a surrender. I find that when I'm searching for the cure I feel a sense of inner pressure that drains my energy. I also find that when I'm trying to act like I feel better than I really feel-this too drains my energy.

I'm trying to find a way to accept this and rest into it.

I feel just lost though. I don't know what to do next in my treatment. Having my doctor bring up valcyte has put in a tizzy. I keep pretending I've made a decision to see how each one feels but I can't get a sense of what to do.

I bought a book by a woman who did actually recover from cfids by focusing on sleep, rest, and diet. It took her 3 years. Unfortunately, that hasn't worked for me though I can't say I've truly been resting. To me, resting implies a sense of peace also. Something I've found very elusive this past year.

In the middle of the night I found myself planning on how I think my days should be structured to include meditation/relaxation, a short walk when I can. I'm starting to read a book called Poetry as Spiritual Practice. I've only read the first few pages but I like what it has to say so far. I plan on also reading part so of another book that helps one reconnect with a core inner part of oneself. I need that right now.

I realized too last night that I'm trying to create connections with certain people where in actuality there are little. It's like trying to get blood out of a few turnips. That itself sucks up energy because I find myself feeling disappointed a lot of the time that my attempts to connect fall short. I imagine it's hard to know how to be with someone who is chronically ill.

I do hope though that this latest virus or whatever it is, eases up a little. I think the diflucan might be making me a little nauseated. Something is.

Monday, October 13, 2008

I Can't Find the Bus

The one that seems to have run over me. I'm not coming out of this downward turn like I'd hoped. Having an analytical mind is a strength except when it comes to this illness. My mind won't let me rest. I keep trying to find the reason why I'm feeling so very ill.

Is it a reactivated virus? Is it because I'm off all antibiotics? Or because I started diflucan (which I now call diFLUcan)? Am I having a candida die off? Is the lyme reactivating? Am I getting worse? Is is a herxeimer reaction? Is it from the ProBoost I started taking? Or maybe it's because the methylation supplements have kicked the methylation cycle into gear and I'm experiencing those effects.

At bottom, it's an awful feeling of helplessness and uncertainty. When it comes to illnesses like these, medicine is back in the dark ages. There is no certainty-no reliable tests. Treatments are a guessing game-an experiment. You try a treatment and wait and see. If you get worse it could either be a healing crises which would mean the treatment is on the right track or side effects or a crash.

And people wonder why I spend so much time trying to research this stuff. I just want answers. The fact is-I won't get them. At least not in the way that I want.

I'm reminded of the AIDS epidemic back in the 80's and 90's. I worked in SF back then and was involved in the community so I witnessed first hand what happened.

I had a disturbing dream last night the effects of which have been lingering all day. I'm begining to believe that bad/weird dreams might be part of this illness.

I think my brain is really tired. I'm suddenly unsure of how to spell simple words. It's a little alarming.

Thank you to those who stop by to read this blog and leave comments. It means a lot and helps reduce the feeling of isolation. I wish you all a full recovery...

Saturday, October 11, 2008

Feeling Rotten

I can't believe how rotten I feel. My muscles are aching. I have a headache, my sinuses hurt. I'm slightly nauseous and have that agitated exhaustion, the fatigue is horrible, I have shortness of breath, and have that weak feeling. I'm not on any antibiotics so its not a herxeimer reaction.

It must be the virus that has reactivated. I tried all the tricks I know to get my body going today because I wanted to be able to go to my sister and brother-in-laws birthday party.

I had this feeling that if I just pushed myself then I could will myself out of how badly I felt. I thought that maybe going for a walk would help but I barely made it partway down the block before I had to turn around and come home. That's never happened to me before.

I'm filled with dread about everything. The thought of this feeling continuing on and on is dreadful. The thought of this feeling getting worse on antivirals is just as dreadful. And then to have to be on it for six months??!!

I started diflucan to treat the candida from all the antibiotics but I waited until evening because I'll probably experience some die off symptoms from that.

I think this next stretch of treatment is going to be the toughest yet. Once I get the lab results my doctor and I will tackle the viruses. I was hoping I'd be able to avoid this part.

I hate that these headaches are back. It's a headache but worse because it feels like my brain is actually swollen. Oh, and then there's the heart palpitations that are back multiple times daily.

I think the trip to Santa Rosa wore me out plus my immune system is down from the illness itself and beiong on antibiotics for 5 months.

And then there the return of my ingrown toenail. Except its on the opposite foot as the one that had the staph infection and abscess. It's a small thing in the scheme of things but I get freaked out by it. I have to call the podiatrist on Monday. He's going to have to do that procedure to remove the toenail. I don't know how I'm going to make it without fainting given how badly I'm feeling right now. Maybe I could arrange it so I can faint and then he could do the procedure. Just get both of them over with.

Friday, October 10, 2008

Back to the Beginning

When I started this blog I was just about to start treatment with Valcyte. But a twist in the road led me to treating lyme/babesia for the past 5 months.

Now I'm back to the Valcyte question. My doctor is an integrative doctor who specializes in cfids, lyme, and other chronic illnesses. He isn't hesitant to recommend alternative treatments but also relies on western medicine.

So I took notice when he said he thinks the virus (s) have a stronghold on me. It was pretty clear that not only did he want me to start Valcyte but he wanted me to start treatment now. There was a bit more of a sense of urgency about it then before.

I've been doing a lot of research again. It's a big tough decision. It's a toxic drug. Recovery can be dramatic for some though some people have had no result and some have become worse (small minority I think). On the one hand I have nothing to lose. On the other hand if I lose what little bit of functioning I have it's everything to lose. There's also the risk of cancer with the drug yet the risk of developing cancer with these viruses and my family history is most likely equally as high.

It will be interesting to see the results of the RNase L panel. I have to say I'm pretty tired of doctor's appointments, getting blood drawn, taking medications, herxing, dealing with side effects etc... but if it will get me better....

I did a 24 Hour Urine Cortisol testing starting yesterday and finishing this morning. Weds I did bloodwork to test for ACTH levels. Both of these tests will test my adrenal functioning.

For 24 Hours I had to pee in a cup and then keep it all stored in a huge vibrant orang container marked biohazard. Today I went to the lab to drop it off. Unfortunately there wasn't a parking place in front and I ended up parking a couple blocks away. It was a bit embarrassing walking with this bright orange container. I'm sure people driving by or passing me on the street didn't know I was walking around with a gallon full of urine.

Then I walked into the usually quiet lab only to find it crowded. Almost every chair was full. I walked up to the counter with my huge container full of pee hoping the lab tech would just take it from me. Nope. I had to sign in and then sit there. Amongst all those people. With the big orange container full of fluid marked biohazard sitting on my lap. I tried not to look people but I couldn't help notice people glancing over out of the corner of my eye. I'd quickly look at the person almost daring them to ask me what it was. They'd look away just as quickly. I hadn't showered. I didn't look well. I was dressed in sweats. About 3 people entered the lab at the same time. All of them had to find a seat. There was an empty one next to me. It was almost like musical chairs. Two of the people darted to the chairs farthest away from me and one unlucky man had to sit next to me. Boy did he move quickly once another chair opened up. I'd have done the same thing. After 20 minutes I was able to turn in my urine and leave.

It was quite humbling.

I haven't been feeling well. That's an understatement. It's clear that a virus has reactivated. I have a virus lodged in my brain. It freaks me out sometimes to think about it but ironically the freaking out is partly due to the infection itself. It's almost like reliving that moment in ET over and over. The one where young Drew Barrymore screams at seeing ET. ET in turn screams at her and they end up scaring each other. It's like the infection itself creates anxiety. The anxiety creates these interesting frightening potential scenarios in my mind. I get more anxious and then I'm off and running.

Thanks goodness one of my sisters' gave me a Playstation 2 for my birthday. I have to pace myself with it. But it sure helps break the cycle I can get into during the day. It's addicting.

Tuesday, October 7, 2008

Doctor Visit

We drove up north today for an in person doctor visit as well as IV therapy. I was dreading the drive and how much it would wear me out.

My first question to my doctor was the narrative report to SSDI. He said he had to write that because that is the only language SSDI will understand. He believes I'll have a lot of improvement. Whew!

I had what's called a Myer's Cocktail. It's an intravenous vitamin mineral solution and it's awesome. The Myer's cocktail, developed by the late John Myers, MD of Baltimore, Maryland, consists of magnesium, calcium, each of the B vitamins and vitamin C. I think the IV had 10 grams of vitamin C in it. I also had a shot of glutathione which is important in immune system functioning.

Daphne said that as I was receiving the IV she could see the color in my face return and the dark circles under my eyes got better. It was expensive but worth it to feel relatively normal for a few hours.

I also had blood taken for an RNase L panel. I guess RNase L is an interferon with antiviral and apoptic activity. When high it indicates an active viral infection. This is the most reliable test availabe to determine if a virus is active. I have titers to HHV 6 and EBV that indicate reactivation but the testing isn't reliable. While the RNase L test won't point to what viruses are active it will indicate the need for antivirals. The test results will be available in about 3 weeks.

Dr. B believes that the lyme and babesia are now under control and that what remains is/are viruses. Treating viruses is difficult. The testing is unreliable and the antivirals available aren't great.

The lyme/babs were opportuntistic because my immune system is down. Part of the longer term treatment will be getting my immune system back in balance.

The subject of Valcyte came up. My doctor believes the virus has a strong hold on me. I mentioned I'd done a lot of research into Valcyte and heard a lot of horror stories. He said it's up to me. We will talk about it again once the test results are back.

The symptoms I've been having for the past 2 weeks are similar to ones I had last fall. I've had a return of neurological symptoms: brain fog, that weird anxiety, headaches, sweating, muscle aches. My doctor thinks that for whatever reason a virus has reactivated in the past 2 weeks.

It almost feels like that alligator game where an alligator head pops up. When you've bopped one alligator head another pops up. When the lyme was being treated the babesia symptoms popped up. Now that both of them have been treated the viruses have popped up.

My gallbladder is inflammed from all the antibiotics and I have candida overgrowth as well so I'll take Difulcan to treat the candida. I'll stop the Clarithromycin and Mepron which is kind of a relief.

We got petri dishes to test for mold. Because I have the multi susceptible gene if there is toxic mold that can defeat any treatment that's attempted.

I got the chance to ask my doctor two questions that have bothered me for awhile. One is that after I had surgery for the bone tumor (and then replaced with synthetic bone graft) I had my first taste of this awful anxiety. It was flat out-out of control anxiety on a daily basis with panic attacks. I'd never experienced anything like it until I started getting sick last year. I told my doctor about that experience and he said the bone graft material probably had a bug in it. Other people would have been able to clear the bug but because of my genotype my body responded differently.

The doctor also gave me a shot into the scar tissue where the surgery was. The scar is probably about 1.5-2 inches right in the distal tibia area. I happen to glance over just as the doctor was holding this big, long, fat needle up in the air. He injected the needle with some stuff into the scar tissue three times. That friggin hurt.

Until I get on an antiviral medication I'll continue to take Argentyn 23 (colloidal silver) and added Proboost: Thymic Protein A.

Updated Treatment:

Thymic Protein A
Argentyn 23 (continue)
Cell Therapy (cont)
Perque B12 (cont)
Phosphatydil Serine Complex (cont)
1/2 Intrinsi B12/Folate (cont)
1/2 Folapro (cont)
1 Neuro Health Vitamin (cont)

My brain is fried. I can't remember anything else.

Friday, October 3, 2008

A letter to SSDI from my doctor

My attorney requested a written narrative report from my doctor to support my claim for SSDI which is now in the reconsideration stage. My doctor sent me a draft of the letter but it didn't include the last paragraph which has depressed me to no end.

Here's a copy of the letter:

I have been treating ***** since April 18, 2008. She suffers from debilitating multi-system complaints that meet diagnostic criteria for Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). As you know, CFIDS is a legitimate medical condition, recognized by the CDC, that is unusual because its diagnosis does not depend upon objective laboratory or physical exam findings. The diagnosis is based entirely on subjective complaints, after excluding other recognized medical conditions. Of note, she has a medical history of hysterectomy, hay fever, and a past episode of adhesive capsulitis that she has recovered from. None of these medical conditions contribute to or cause her fatigue.

CDC Diagnostic Criteria for Chronic Faitgue and Immune Dysfunction Syndrome:

• Clinically evaluated, unexplained, persistent or relapsing fatigue new of definite onset; not relieved by rest; results in substantial loss of function of work, school, social or personal activities AND 4 of the following: (also, CBC, ESR, chemistry panel, TSH, etc must be normal)
o Self-reported impairment in short term memory or concentration
o Sore throat
o Tender cervical or axillary nodes
o Myalgia
o Multi-joint pain, no swelling or erythema
o HA of new pattern and severity
o Unrefreshing sleep
o Post-exertional malaise lasting greater than or equal to 24 h

She meets diagnostic criteria for CFIDS. The symptoms started in July 2007. She demonstrates absence of any other medical or psychological condition that could account for these symptoms (absence of hypothyroid, blood dyscrasias, normal CBC, ESR, chemistry panel, etc). She has profound disabling relapsing fatigue lasting > 6 months not relieved by rest. She has self-reported impaired memory, myalgias, headaches, unrefreshing sleep, post-exertional fatigue and malaise lasting more than 24 hours. She has intermittent sore throat, tender lymph nodes and joint pains.

Of note, she does have some positive bands on Western Blot for borrelia but does not meet case definition for Lyme. She is undergoing empiric treatment for babesia and lyme, though as stated above, lab evidence does not support this diagnosis.

She has received nutritional and graded exercise counseling and is following through on treatment recommendations, though her clinical improvement has been minimal. She also has IgG antibody positivity to HHV-6 and EBV.

She must rest or sleep 19-22 hours per day because of the profound fatigue.

Functional Capacity:
Standing: less than 15 minutes at a time, limited by faitgue
Sitting: can sit for an hour at a time, limited by fatigue
Concentration: significantly impaired to a degree that would prevent desk work
Lifting, bending, pushing, pulling: cannot do any of these activities secondary to fatigue

Her prognosis is poor. CFIDS is a devastating illness that frequently lasts 10 or more years. However, some patients do recover sooner. She will continue treatment and we will follow her progress, hoping that she may recover in the next few years.

Please let me know if I can be of further assistance.



I have an appointment with him on Tuesday. I plan on asking him if he believes my prognosis is poor or if he wrote that because it would help my case. I'm trying to console myself that he wrote it to help my case though I know in my heart he's not the type of person to exagerrate things.

My lawyer thought it was a great letter. He and I don't have the same perspective though. I can't live like this for a few more years much less 10 or more. I don't know how some people do it.

Am I destined to end up alone in Section 8 housing or worse, a nursing home? The most horrible thing about this illness is it doesn't kill you quickly. It's a slow, slow death all the while watching from the sidelines as your life disappears before you as if some magic trick. I'd like to talk with the magician and let him/her know that I'm ready for the trick to be over.