It feels like all the improvements I've made have vanished. I've been practically bedbound for the past week. I've had a lot of stressors the past couple weeks and still have not recovered from the intense round of antibiotics to treat the staph infection. As Murphy's law would have it the infection started to come back late last week prompting a return to the podiatrist. The podiatrist noticed the big toenail on my other foot is starting to get ingrown. Because of my history of developing staph infections quickly he said "we need to pre-empt this one" so I'll be having minor surgery to remove part of my toenails on both toes again. I'll have the surgery on November 30th almost 1 year to the day that I had the last toe surgeries. It's quite discouraging having to go through this again but I can't afford to risk yet another staph infection.
One week ago I was in bed with a mild case of vertigo. I've been having little episodes ever since. Plus at times I feel on the verge of having some sort of seizure. It's a strange feeling. I feel like if I let go I'm going to go into full on vertigo or start having seizures. Both frighten me.
I'm continuing to lose weight. Luckily I had gained a bunch of weight-probably 35 pounds. I needed to gain 20 of those pounds. I've probably lost almost 20 pounds now. I don't have much of an appetite so I'm having to force myself to eat. I feel nauseated most of the time but luckily its rather mild.
I don't know what to do. I can feel Eeyore sitting on my shoulder telling me "what's the point of pinning my tail back on for it will just fall off again." I need to speak with my ME/CFS doctor but it costs a lot of money. Until I get approved for SSDI I'm in a tight spot.
So I'm feeling fairly weepy. I don't know how people who've had this disease for a long time hang in there. I hope I can hang on. Dr. Nancy Klimas at the end of the following video that "now is the time not to give up hope":
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
For awhile I hung on to those words but with the current decline in my health I'm finding it difficult to hang on to hope. I'm frightened of what's ahead. I'm scared about possibly having a retrovirus like XMRV. Mainly I'm frightened because I'm developing new symptoms and I have no idea what to do.
I've decided to stop the LDN for now just in case that set something in motion. I doubt it but just in case. I think all the stress of late has done a number on my body. My main complaint has to do with my brain. It just doesn't feel well-almost like its swollen somehow. There's the headaches, the sound sensitivity, the smell sensitivity. I'm tired of it. I feel trapped in it.
I'm trying to find my way back to a sense of peace but need new tools. The ones I have aren't working right now. I long for a sense of community but maybe I'll never have that again.
I was doing some thinking about when I got sick. The most serious and debilitating symptoms showed up in 2007 but in 2005 I did acupuncture. The acupuncurist had me do a 24 hour saliva test for adrenal functioning and when the results came back he said to me "I'm surprised you're even functioning." My adrenals were shot in 2005 but I didn't take the test seriously. I was so engaged in writing my dissertation, working, etc...that I didn't have time to not function. It has made me wonder if I've been sick longer than 2 years. Supposedly XMRV likes cortisol so high stress causes it to replicate.
I'm getting dizzy so will have to abruptly stop here. I just wanted to give a little update. If anyone has any suggestions feel free to suggest.... : )
Oh, The Whittemore Peterson Institute has the questionnaire up on their website. Anyone in the world can take it. I would encourage everyone to fill it out as all and any information is useful. Here's the link. Scroll down near the bottom of the page and you will see it.
Sunday, November 15, 2009
Thursday, November 5, 2009
Trolls
I was forwarded this article today regarding trolls. I thought it might be helpful in case anyone else finds themselves in this situation. I found it quite helpful.
Statement from Whittemore Peterson Institute Regarding XMRV Testing
The Whittemore Peterson Institute has issued a statement regarding XMRV testing. They recommend VIP Dx Lab.
It's worth noting that all net proceeds from the test will go towards funding further research at WPI.
This was posted on The Whittemore Peterson Institutes Facebook page.
It's worth noting that all net proceeds from the test will go towards funding further research at WPI.
This was posted on The Whittemore Peterson Institutes Facebook page.
Wednesday, November 4, 2009
Updates
A number of people have sent emails asking about XMRV testing specifically regarding the study my doctor's office is doing. Since I don't have the energy to respond to emails right now I thought I would post a couple answers to questions people asked.
I did go to my doctor on Monday and got blood drawn for a study. However they are only testing patients who are already a part of their practice. I was not able to find out if there are other doctor's across the country doing similar studies.
The Whittemore Peterson Institute will be conducting a study starting in a month or two. I am fortunate to be able to participate in that. I wish I had the name of the researcher who left an anonymous comment on my blog post last week urging me to contact WPI because of my family history of cancer (my dad has a reoccurrence of prostate cancer as well as chronic lymphocytic leukemia and my mom died 44 days after being diagnosed with a very aggressive form of adenocarcinoma). Somehow I managed to find my way to Andrea Whittemore-Goad who very generously put me in touch with one of the researcher's at WPI. I was contacted by someone from WPI yesterday. I am reminded once again that the words "Thank You" are inadaquate to express the depth of gratitude I feel.
Neither study will provide any answers but I am grateful to be able to participate.
I had to stop the LDN for a few days because it was increasing my sleep disturbance and because the Keflex has been making me feel extra bad. I restarted it at a much lower dose (.5mg rather than 3mg). I'll slowly work up to 3mg).
I'll restart the Artmisinin once I recover from the Keflex. I won't be finished with Keflex until this Friday so I'll restart the Artisinin next week.
Lastly, I've been contacted by a publisher to review a book called "Unexpected Blessings" by Roxanne Black who was diagnosed with Lupus at the age of 15. It is a book of "stories of hope and healing." I received it this morning and took a very brief look at it. It looks like a wonderful book and I look forward to reading it. Once I finish it I'll devote a post to this book.
I did go to my doctor on Monday and got blood drawn for a study. However they are only testing patients who are already a part of their practice. I was not able to find out if there are other doctor's across the country doing similar studies.
The Whittemore Peterson Institute will be conducting a study starting in a month or two. I am fortunate to be able to participate in that. I wish I had the name of the researcher who left an anonymous comment on my blog post last week urging me to contact WPI because of my family history of cancer (my dad has a reoccurrence of prostate cancer as well as chronic lymphocytic leukemia and my mom died 44 days after being diagnosed with a very aggressive form of adenocarcinoma). Somehow I managed to find my way to Andrea Whittemore-Goad who very generously put me in touch with one of the researcher's at WPI. I was contacted by someone from WPI yesterday. I am reminded once again that the words "Thank You" are inadaquate to express the depth of gratitude I feel.
Neither study will provide any answers but I am grateful to be able to participate.
I had to stop the LDN for a few days because it was increasing my sleep disturbance and because the Keflex has been making me feel extra bad. I restarted it at a much lower dose (.5mg rather than 3mg). I'll slowly work up to 3mg).
I'll restart the Artmisinin once I recover from the Keflex. I won't be finished with Keflex until this Friday so I'll restart the Artisinin next week.
Lastly, I've been contacted by a publisher to review a book called "Unexpected Blessings" by Roxanne Black who was diagnosed with Lupus at the age of 15. It is a book of "stories of hope and healing." I received it this morning and took a very brief look at it. It looks like a wonderful book and I look forward to reading it. Once I finish it I'll devote a post to this book.
Crashed
I probably shouldn't be blogging today. I'm in a weird crash and feeling sad and upset by some things. This is one of those times I should just try to stay with my feelings and process them privately. I may say some things I shouldn't but at the moment I'm too tired to care. I've been taking 500mg of Keflex every six hours which means I've had to set my alarm for 4:00 a.m. so as not to miss my dose. And yes, I have needed a high dose of antibiotics to treat the staph infection that was spreading. Needless to say I haven't been getting much sleep which is probably contributing to my mood. In addition I'm getting episodes of vertigo when I spend too much time on the computer.
Obviously I've been spending much time blogging about XMRV. This seems to have upset a number of people some of whom have either left snide comments on my blog or written some less than kind emails. The most upsetting thing has been that a couple of the anonymous comments came from people I know and another from a completely unexpected source. I realize the news about xmrv is creating a lot of different emotions. I too am going through the ups and downs and crashes from all of this. But its the first time I've had reason to hope or even entertain the hope that maybe just maybe I can have more of a life than I do. I'm not able to get out much. I can't walk more than one block, I can't drive more than a couple miles. If I blog it means not sending out emails. If I send out emails I can't blog. Each decision I make about something I do involves sacrificing something else. Unfortunately it means I can be perceived as flaky by people who don't have this and then there's the silent punishment for not being able to respond in a timely manner.
I miss by blogging friends or maybe I simply misjudged. It wouldn't be the first time since I've gotten sick that I've misjudged peoples intentions. Nor is it the first time that people have disappeared. I'm used to it by now from people who aren't sick. Sadly I've come to expect it from healthy people. I just didn't expect this sort of response from my peers. I didn't expect the comments or emails(the supportive ones I love). I try not to let it but I do find them hurtful. I wasn't going to post about it but I think I'm just too raw at this point from not feeling well, the lack of sleep, etc...I can't shake the feelings. It's hard to have thick skin when I don't feel well. Plus I'm pretty sensitive to feeling on the periphery. It's an old wound.
But I refuse to put aside my enthusiasm for what is occurring at The Whittmore Peterson Institute nor will I stop blogging about it. I've read on message boards where a few people are saying that the pharmaceutical industry just wants more money and that they will capitalize on this. You know what I say to that? GREAT! Because it means there will be more research into finding medications that will help us. I'm not naive about profit motivations. I worked in San Franciso since before the AIDS epidemic. I lost many friends to that disease. Then they discovered that the retrovirus HIV. It wasn't too long after that the antiretroviral drugs came out. Now they are able to stop HIV in its tracks. People are living with HIV now rather than dying from it. People are dying from ME/CFS too.
The Whittemore Peterson Institue has been able to examine live XMRV in vitro. That means they can start testing treatmens on the live virus. Will this be an answer for everyone with ME/CFS? That remains to be seen. Am I excited to possibly have a deadly retrovirus? Absolutely not. Whether its years or sooner I am hopeful that we will get answers.
From the Reno Gazette :
Obviously I've been spending much time blogging about XMRV. This seems to have upset a number of people some of whom have either left snide comments on my blog or written some less than kind emails. The most upsetting thing has been that a couple of the anonymous comments came from people I know and another from a completely unexpected source. I realize the news about xmrv is creating a lot of different emotions. I too am going through the ups and downs and crashes from all of this. But its the first time I've had reason to hope or even entertain the hope that maybe just maybe I can have more of a life than I do. I'm not able to get out much. I can't walk more than one block, I can't drive more than a couple miles. If I blog it means not sending out emails. If I send out emails I can't blog. Each decision I make about something I do involves sacrificing something else. Unfortunately it means I can be perceived as flaky by people who don't have this and then there's the silent punishment for not being able to respond in a timely manner.
I miss by blogging friends or maybe I simply misjudged. It wouldn't be the first time since I've gotten sick that I've misjudged peoples intentions. Nor is it the first time that people have disappeared. I'm used to it by now from people who aren't sick. Sadly I've come to expect it from healthy people. I just didn't expect this sort of response from my peers. I didn't expect the comments or emails(the supportive ones I love). I try not to let it but I do find them hurtful. I wasn't going to post about it but I think I'm just too raw at this point from not feeling well, the lack of sleep, etc...I can't shake the feelings. It's hard to have thick skin when I don't feel well. Plus I'm pretty sensitive to feeling on the periphery. It's an old wound.
But I refuse to put aside my enthusiasm for what is occurring at The Whittmore Peterson Institute nor will I stop blogging about it. I've read on message boards where a few people are saying that the pharmaceutical industry just wants more money and that they will capitalize on this. You know what I say to that? GREAT! Because it means there will be more research into finding medications that will help us. I'm not naive about profit motivations. I worked in San Franciso since before the AIDS epidemic. I lost many friends to that disease. Then they discovered that the retrovirus HIV. It wasn't too long after that the antiretroviral drugs came out. Now they are able to stop HIV in its tracks. People are living with HIV now rather than dying from it. People are dying from ME/CFS too.
The Whittemore Peterson Institue has been able to examine live XMRV in vitro. That means they can start testing treatmens on the live virus. Will this be an answer for everyone with ME/CFS? That remains to be seen. Am I excited to possibly have a deadly retrovirus? Absolutely not. Whether its years or sooner I am hopeful that we will get answers.
From the Reno Gazette :
Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.
“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.
“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”
And it has.
Thursday, October 29, 2009
Annette Whittemore's CFSAC Testimony
I spent the day today hanging out on the Whittemore Peterson Institute's Facebook page while at the same time watching the testimony taking place at the CFSAC (Chronic Fatigue Syndrome Advisory Meeting) meeting in Washington, DC. It was a great place to hang out and "talk" with other ME/CFS/XAND patients who were also watching.
It was an emotional day. I'm crashed and have a splitting headache along with feeling dizzy from the high dose of Keflex I'm taking so this will be a brief post. I wanted to post the testimony of Annette Whittemore who is the President and founder of WPI. She also has an adult daughter who suffers from this disease for twenty (?) years. Her testimony followed Dr. Peterson's. I can only imagine how heartbreaking it has been for her to watch her daughter suffer from this illness since age 12. Here's her testimony. It was posted on youtube by khalyal. If it weren't for Annette Whittemore's tireless determination to get help for her daughter I don't think XMRV would have been discovered. Or at least not for a very long time the way things were going. She and everyone involved with the WPI are true heroes. I'm also trying to find videos of Dr. Mikovitz who is another heroine. All I have to say is God Bless these people. Words are inadequate to express the depth of gratitude I have for them.
It was an emotional day. I'm crashed and have a splitting headache along with feeling dizzy from the high dose of Keflex I'm taking so this will be a brief post. I wanted to post the testimony of Annette Whittemore who is the President and founder of WPI. She also has an adult daughter who suffers from this disease for twenty (?) years. Her testimony followed Dr. Peterson's. I can only imagine how heartbreaking it has been for her to watch her daughter suffer from this illness since age 12. Here's her testimony. It was posted on youtube by khalyal. If it weren't for Annette Whittemore's tireless determination to get help for her daughter I don't think XMRV would have been discovered. Or at least not for a very long time the way things were going. She and everyone involved with the WPI are true heroes. I'm also trying to find videos of Dr. Mikovitz who is another heroine. All I have to say is God Bless these people. Words are inadequate to express the depth of gratitude I have for them.
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.
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.
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