Tuesday, October 27, 2009

XMRV Study Starting

NOTE: PLEASE DO NOT REPOST WITHOUT PERMISSION

I don't mind the info being reposted on blogs. Everyone has been wonderful about asking and I feel like we all help each other out with things but please ask if you are wanting to post on a message board.

I received a phone call from my doctor's office today. They are starting a study to see what XMRV is doing in the body. It will begin next week so I'll be going up on Monday to get my blood drawn.

I've been worried about how I was going to get the money together to get tested. Now I don't have to worry because they are going to send the blood to WPI (or VIP dx labs which uses the same technology that WPI did in the original study). I will get tested for both active and latent XMRV and it will not cost me a thing! As I mentioned in a previous post both tests cost $650. The study will also involve filling out a questionnaire. It will take a couple months before the results are in but that's fine with me.

Apparently Dr. Mikovitz is very interested in the population that is served by my doctor's office. I'm feeling very grateful for my doctor and even more grateful for Dr. Mikovitz and even more grateful for Andrea Whittemore Goad and her family. If it weren't for them we would still be in the dark ages when it comes to this disease.

Changing subjects: I won't be continuing the Cipro. I took my third pill this morning and had terrible dizziness along with terrible anxiety and a few heart palpitations which doesn't help the anxiety any. I've been feeling horrible all day and just counting down the hours until this stuff leaves my system. I called my podiatrist who changed the prescription to Keflex. I hope the only reaction I have to Keflex is my toe getting better. It has already improved in that I'm having very little pain.

On a completely unrelated note I wanted to share a couple things that fellow ME/CFS'rs have created. One is a website designed by Toni . I always look up blogs that people who comment. I clicked on Toni's name, then clicked on her website fully expecting a blog. What I found instead was beautiful. There is what looks like a painting on the first page. It is stunning. I thought to myself "Wow! Where did she get that painting? I want one!" She painted it! If you want a treat I recommend visiting her website and reading everything on their. There are jewels everywhere. I found it quite moving.

Then there is Pris Campbell's book Sea Trails which can be found at this website It is a story of a life changing journey she took via a 22 foot boat down the east coast. See Pris's blog Song's To A Midnight Sky to read more and to read her moving poems (she is also an accomplished poet). I read a couple excerpts from her book and was so thrilled I purchased a copy for myself and a couple for gifts.

These are just two people who I find inspirational. They also give me hope because both are about as ill as I am and they both created beautiful things. I think I might start mentioning other people's creative blogs here as well.

There is so much pain and suffering in our ME/CFS community but also so much beauty, compassion, wisdom, and kindness.

Monday, October 26, 2009

First Three Days on Low Dose Naltrexone (LDN)

The liquid version of LDN arrived on Friday. Eager to start I took a full 3 ml (which equals 3 mg) at about 9:30 Friday night. That was a mistake because I was up the entire night finally falling into a fitful sleep at about 6:30 Saturday morning for 2.5 hours. I started doing some research although it was hard to take in with after a week of poor sleep followed by a night of no sleep.

Here's what happened though. I was starting in on a big crash again on Friday feeling very "viral" (beyond exhausted, chills, sweating, etc). Saturday even though I didn't sleep there was no trace of the symptoms I felt the previous day. I also felt a shift in my mood. I felt like I had a bit of energy too in spite of the poor sleep. And it seemed like it helped my cognitive functioning a bit.

I decided to take 3 mg again on Saturday but this time I took it at 3 pm. I had difficulty sleeping Saturday but for a different reason. Saturday night I woke up with a lot of pain around an ingrown toenail. I was bummed because I knew it was infected. The previous 5-6 months I've had a very low grade infection and only in a small spot. It would go away once I soaked in it epsom salts a couple times per day.

But just like what occurred when I started the simplified methylation protocol it seems the LDN might have shifted my immune system which brought the smouldering infection to a full blown one which is a good thing in terms of maybe my body will finally get rid of it now. By Sunday my toe was an angry red and swollen along the side of the nail. It was also very painful. Sunday night the entire toe was red which raised my anxiety level.

Today I was able to get in to see the podiatrist thank goodness. This morning the toe had some pus and blood. The podiatrist couldn't even touch one part of the toe because it was too painful so he shot me up with a local anesthetic and trimmed aboutu 50% of the toenail away. I happened to glance at my toe and was surprised at the amount of blood there was. Not the best moment to have glanced at it but I didn't faint. He put me on Cipro which I'm not a fan of because it can cause permanent tendon damage. I'm also a little worried about my gallbladder. Going through lyme treatments last year caused my gallbladder to become inflamed. It hasn't been the same since so I'm hoping it will survive a couple weeks on Cipro.

Getting back to LDN-I took 2.5mg yesterday afternoon and slept a tiny bit better last night but was awakened early this morning with bad anxiety and a wired feeling. Clearly starting out at a dose of 3mg is too much for me. I think for anyone who is sensitive to medications its best to start at a low dose and work up to it. So far, I've not had huge sensitivity issues with meds so I was surprised.

Today I'll take 1.5 mg and see how that goes tonight.

What I've been reading about LDN has been encouraging. Based on my response so far I think this is going to bring me more improvements so I'm feeling encouraged.

I don't know if this is related but I noticed yesterday that I have swollen and painful lymph nodes right near my armpit. I'm a little concerned about this because its a new thing and I've lost about 15 pounds in the past 7 weeks. I'm struggling with my appetite again and I don't like it so I'm trying to eat small meals throughout the day.

I haven't really noticed anything from the Artemisinin. I'm now on a 7 day break from it. It's kind of funny to me that I'm back on lyme treatments (Cipro is used to treat Bartonella and Artemisinin for Babesia) but I'm not treating lyme or its co-infections. It will be interesting to see what happens while on these two lyme treatments that aren't for lyme.

Friday, October 23, 2009

So Close Yet So Far

There's lots to catch up on. I feel the usual slight frustration knowing that my cognitive faculties aren't all there. When I was in school or writing my dissertation I'd get a great feeling when I felt like I expressed exactly what I wanted to say. The word finding problems as well as problems with short term memory make it more difficult to write. Writing also makes me more self-conscious of my cognitive difficulties. There are many, many people with ME/CFS who have written books, articles, poetry, music, etc..Not to mention Laura Hillenbrand who wrote Sea Bisquit (and has another book she is finishing!) while ill. When I read others' blogs etc...I feel hopeful that I might experience a return of some cognitive functioning. I already have. But I want more.

I'm a little burned out about some things. One of them is ME/CFS message boards. A little while ago I put up a post on my blog regarding testing. I got the information from someone who somehow manages to find out these things and had permission to repost. I thought it would be helpful for people who wanted to get tested. I was surprised when I found my post quoted word for word on a message board. Then I saw it on more message boards and then Prohealth had something on their website and mentioned this blog. That's what got me upset. Prohealth did not contact me asking ofr permission to repost. I was a bit surprised that they would copy someone's blog and not ask for permsission to repost. Then the piece that Prohealth did got reposted on various lists which greatly increased traffic to my blog. I should be happy about it but instead I feel intimidated, a bit embarrassed and caught unawares. I feel like I do when I dart outside in my pj's to get the paper thinking and hoping no one would see me but just as I'm outside my door a large busload of people drive by and there I am-outside in my pj's. And it's 3:00 in the afternoon.

So I stopped posting about anything personal because I felt like people don't want to hear about the emotional aspect of living with this horrid disease but would rather hear about the latest updates on XMRV. I had to remind myself why I started this blog in the first place.

I started this blog about six months after I was diagnosed in order to talk about what is was like to have this, to track my progress, symptoms, and responses to various treatments. If I had to tell someone what this blog was about I would say its about the emotional aspects of adjusting to living with a devastating and crippling chronic illness that took my ability to live my life (the way I want to) away. It took away my hopes, my dreams, and my beloved career. This blog is a place for me to express what it's like to live like this.

I feel like I had reached a place of peaceful acceptance right around my birthday. I'd fallen into sort of a rhythm again. It was nice not to be so consumed by grief, shock, and despair. I was feeling good about the improvements gained from various treatments.

Then the news about XMRV came out and I was swept away. I crashed and burned from all the reading, research, phone calls, etc.. that I did. About a week after the announcement I found myself feeling strangely agitated and angry but couldn't figure out why. I knew I was crashing and last week had a low grade fever off and on but that didn't explain the agitation/anger. I finally realized that I was having an intense experience of "we are so close but so far."

I do feel that this is a big player in our disease, probably the driver but that doesn't mean I'm going to get well now. The news opens doors, ones that desperately need to be opened. That so close but so far feeling has reawakened the grief in me and a deep longing to return to my career. I cried for a long time last night about it.

I started Artemisinin on Tuesday. My ME/CFS doctor said it had antiviral properties but I'm having a hard time finding anything about it having antiviral properties on the internet. It's helpful for malaria, babesia, and parasites but viruses??? I am concerned about liver toxicity as it can cause hepatitis.

Tonight I'll start Low Dose Naltrexone. Hopefully that will help. I have no idea what to expect from it but I'm encouraged by what I've been reading.

Today I've been feeling very much like I'm in a bad viral flare again with chills, etc...

My SSDI attorney heard about XMRV and wants me to get tested for it. I heard from the Court in early September. They wanted additonal records to see if they could make a determination without me having to go to Court. This is routine. My attorney said I'll have to go to court because there isn't enough evidence for them to make a ruling on the record. Unfortunately, everything is delayed because my ME/CFS doctor is too busy to fill out the SSDI forms (its been one month now). My attorney is frustrated at the lack of response and has sent two requests to no avail. I told my attorney about my second doctor dying. He was in a pretty bad mood the day I spoke with him. He said "you had ANOTHER doctor die?" in a tone that was somewhat blaming.

My car isn't working-the battery keeps dying. I just find that so symbolic. I've been having problems with the car battery dying ever since I got ill. What's a real drag about not having a car is I can't go to any doctor's appts right now nor can I follow through on the sleep study a doctor ordered etc...I'm feeling even more housebound and isolated as a result. Not that I can drive far but I can only walk a block so driving is kind of critical. Taking the bus isn't an option until the orthostatic intolerance has eased up a bit more. I might need to increase my Pindolol because I'm getting heart palps again.

My dad has a reoccurrence of prostate cancer and chronic lymphocytic leukemia. I told him about XMRV. He was going to bring the information to his oncologist. Luckily he is responding to treatments. Given my family history I would be very surprised if I don't end up being positive for XMRV. And that isn't good news.

I

Thursday, October 15, 2009

Update-XMRV Testing

I just spoke with VIP Labs again due to some conflicting information I've been getting.

They are now saying that they are about 30-45 days away from releasing the test because they need to get the test licensed and determine quality control and validation (that the test actually tests for what it says it tests for).

I'm not sure why I and others who contacted them were originally told the test was available now but I think its a good thing that they are being cautious and making sure its a valid and reliable test.

Wednesday, October 14, 2009

Strange Times

I'm in another very broken sleep cycle and feel fried from it. It makes me a little nervous when this occurs because it usually means a crash is in the works. Add the broken sleep with increased tinnutis, severe muscle pain, and a new symptom-muscle spasms-and you have the makings of some fun days. The fatigue from not sleeping well makes the cognitive issues worse so I hope that I remember to say all that I'm wanting to in this blog post.

I think I've mentioned before that my primary care physician was also an HIV/AIDS specialist. I say "was" because I found out Monday that he died last week from a pulmonary embolism. I had printed out the article about XMRV and went to his office on Monday to talk to him about it knowing that he would help me sort it all out. I had also hoped that he would have some ideas about treatments.

It's very unnerving because Dr. Scott is the second primary care doctor that I've had die in less than a year. My previous primary care doctor died the Tuesday before Thanksgiving last year after trying unsuccessfully to get out of a trapped eelevator. He fell to his death.

Dr. Scott told me the first time I saw him that he thought I had either a slow virus or a retrovirus. I wanted to show him the article and tell him that he was right. He was very involved in the HIV/AIDS fight and went to Africa on a monthly basis to provide treatment to AIDS patients there. While I didn't have the close relationship with Dr. Scott that I had with Dr. Kliman it is upsetting nevertheless.

I spoke with my ME/CFS doctor this week about XMRV. He is cautiously optimistic. They are in contact with WPI as well as other ME/CFS doctors throughout the country trying to figure this stuff out. They will be one of the doctor's offices who will be providing unofficial experimental treatments for XMRV so they are putting systems in place to accomodate everything coming their way.
It's worth noting that the AIDS epidemic occurred for some time before the HIV virus responsible for AIDS was discovered. Getting a diagnosis of HIV used to mean a death sentence but now with the medications they can render the virus virtually undetectable. Even though the retro virus is still there it is stopped in its tracks with the anti retroviral medications. This is why I'm hopeful.

Heres an interesting article about the discovery of the HIV virus. Apparently, one researcher thought it was HTLV which is the same retrovirus that DeFreitas found in 1991 in relation to ME/CFS.

The problem with these medications are the cost and side effects. The medications have to be taken daily and you can't miss a dose (even though people do). It's no walk in the park. You know what though-I don't care. I'll be a guinea pig. I told my doctor to put my name on the list for treatment. I want my life back. If I can't have it all back I'd settle for 50%.

I've come a long way since starting treatments for this but I was so far down in terms of functioning that I have a long way to go. One year ago I was basically bedbound with the few exceptions of being able to get out for a very, very short time a couple times per month. Now I can sit up for much longer periods of time, I can get out of the house a couple times per week and my bad days are nowhere near as bad as they used to be.

I know and have known many people with HIV. I lost many friends to the AIDS epidemic. I've seen the antiretroviral meds give people back their lives. Once living with a death sentence some people have had to adjust to living life with the promise of a future.

There is another treatment that is showing promise for ME/CFS patients. I think its pretty well known in the ME community that there is a correlation between ME/CFS and the lymphomas. There is a paper that was published that talks about a three patients who had both ME/CFS and non-Hodgkins Lymphoma. While undergoing treatment with Rituxan they had significant improvement in their ME/CFS symptoms! The only problem is the improvement is temporary. Once they relapsed again they were again administered Rituxan and had the same result. I'm wondering if this is the medication the WPI referred to when they mentioned that a medication cocktail might include anti-inflammatory medications, anti retroviral meds, and cancer meds. Heres the link to the article: BMC Neurology 2009, 9:28 doi:10.1186/1471-2377-9-28

As far as my own treatment goes I will be starting Arteminisin and Low Dose Naltrexone. The Arteminisin I'll take for 7 days then go off it for 7 days. Apparently with Arteminisin the body stops processing it after 7 days so you have to stop in order to trick the body into processing it again. We talked about other antivirals but decided on this because it has such a broad application. For those who don't know Arteminisin is used to treat malaria, parasites, and viruses.

I asked my doctor about my low blood sugar readings. While on Valcyte my blood glucose was on the higher side but off Valcyte it is consistantly low. He said that its likely that my cortisol levels are too low even after 18 months of Cortef. So I'll be doubling my dose of Cortef but still within the therapeutic range.

Dr. Cheney and Dr. Bell have both stated that they believe XMRV is likely a causitive factor in ME/CFS. In fact, Dr. Bell has called XMRV "the puppet master."

There's lots of interesting things in the works so lots of reasons for hope. I don't mean hope for a cure but hope for real treatment.

Tuesday, October 6, 2009

Birthdays

Today is my birthday or the tail end of it. It's been a good one. Sometimes I use certain dates to mark growth or, now that I'm ill with this, periods of recovery. Two years ago I hadn't been diagnosed and I was so frightened because I knew something was terribly wrong. We spent that weekend up at my dad's. I could not stay awake. I remember standing out on their deck which had been warmed by the sun and saying I have to take a nap right now so I laid down on the deck and fell sound asleep.

Last year I was too ill to do anything outside the apartment. The past two years have been filled with confusion, despair, grief, shock, fear, and denial.

I feel like I have survived and am surviving a huge trauma. I might be severely ill with this but I am surviving and I'm rebuilding my life. I have met some incredibly kind people and I treasure my fellow blogging buddies. I really don't know how I would have survived without all of your collective wisdom, suggestions, and guidance. For that I am deeply grateful.

I'd like to spend this next year practicing gratitude, forgiveness, continuing to work on my spirituality, and letting myself off the hook for getting ill.

Today I was able to go out and do some things, a marked improvement from last year.

Thursday, October 1, 2009

It's Been Awhile...

It's been at least two weeks since I last posted. I wish it was because I was really busy because of huge leaps in improvements. Sadly, Tiger Lily, our 11 year old kitty died two weeks ago. She had an aggressive form of cancer (I think I blogged about it when she was diagnosed three months ago). Since she died I haven't had the heart to post or write or do much of anything. She had such a presence. Now what is present is the absence of her. I've been so sad about losing her and more than a bit tired of grief in all its forms.

Luckily we still have our two other kitties who are 14 and 16. The sixteen year old has chronic renal failure that was diagnosed three years ago with a prognosis of less than one year at the time so she is a miracle kitty.

I'd had a virus that lasted about a month. That left right before Tiger Lily died then I crashed again and am trying to recover again from that.

I'm trying to figure out the next step in treatment. I stopped Valcyte on September 7th because of my liver enzymes. Luckily they have returned to normal. I'm having some funny bloodcounts. My hemoglobin is borderline high as is some other red blood cell test. I have no idea why. Also, my blood sugar levels are swinging going from 110 one week to 56 the next. I find this puzzling. I've read that low cortisol can affect glucose levels. I have increased my hydrocortisone by 2.5mg to help the hypoglycemia.

I tried going back to my acupuncturist but was reminded of the reason why I left him in the first place. He's just not that good. When I first saw him in 2005 I would say he was excellent but he seems to have burned out or something.

I have no idea what sort of practitioner to see next. I feel a bit stuck. Right now my treatment consists of continuing with the simplified methylation protocol, nebulizing glutathione, bufferred Vitamin C, Magnesium Malate and...that's it. Oh, and Amantadine which I'm finding somewhat helpful. I was on Valcyte for 7 1/2 months. It did improve my baseline functioning by about 10%. Not a lot but I'm extremely grateful for any improvements. I haven't had my antibody titers retested which is frustrating to me. I'd like to see what my HHV-6 and EBV levels are right now.

I started Prometrium 4 weeks ago. Shortly after starting that the terrible sweating stopped. Now I get light sweats. I think it's helping my sleep.

I've been able to get out a bit here and there which I always enjoy. My youngest sister came over with her golden retriever on Saturday. I really enjoyed visiting with them both. Her dog could easily be a therapy dog.

I've started reading Anne Rice's book about her return to spirituality. So far so good. I like reading about different perspectives on various spiritual disciplines. I don't believe there is one "right" religion or spiritual discipline but I'm trying to find a place that feels like it fits for me.

I'm behind in emails and other things but I'm not judging myself for it which is a nice change.

So that's my update. Now I'm going to catch up on blogs...