Has the Whittemore Peterson Institute found the answers to Fibromyalgia and/or Chronic Fatigue Syndrome? Well in a small study they say that they found a retrovirus in most people with Chronic Fatigue Syndrome, Fibromyalgia, and Multiple Sclerosis.

We have detected the retroviral infection XMRV is greater than 95% of the more than 200 ME/CFS, Fibromylagia, Atypical MS patients tested. The current working hypothesis is that XMRV infection of B, T, NK and other cells of the innate immune response causes the chronic inflammation and immune deficiency resulting in an inability to mount an effective immune response to opportunistic infections. (See XMRV paper in Science.)

This discovery opens an entire new avenue of Neuro-Immune Disease related research and our discovery has brought to this field world-renown immunologists and retrovirologists building our team of collaborators to translate our discoveries into new treatments as soon as possible.

I hope, as I know we all do, that they might be able to finally find some of the answers that we are all looking for.

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The time that I have been back from my treatment in the US, has been long and hard time. My lower back has been giving me a hard time, and it wasn’t until the last week or so that it has been better. I even went to the ER because I could not take the pain any longer. My lower back has always been painful, but this time it was different, my legs didn’t really want to work either. I also had a really hard time with the new med they gave me Sevella. This is a new drug that was approve in March for Fibro, and the pain that comes along with Fibro. It was hard for me to connect words together to make sentences, and I could not really think strait. After about three weeks, I stopped taking the Sevella, and I improved a lot in a short time.

I do believe that taking the thyroid med is helping a lot, and I went almost two weeks, with out the real (not able to get out of bed) pain. It has been a really long time, since I have felt this well. Though last Thursday, I had my first really bad day (I should have listen to my body and went home), I am still not ready to complain.

Last Thursday I also had my first follow-up appointment over the phone since leaving Atlanta, and it was nice to find out that I have some more problems, that we need to look at. Most of things the doctor told me over the phone was not a surprise, and he had even told me, that he expected that I had these issues. I should receive his new orders soon, and I can update you on what else I am having to do.

I have been reading a book recommend by the center on yeast, The Yeast Connection Handbook, by William G. Crook. So I am learning all the issues with yeast and the overgrowth, and what that can do to your body. The hardest part is learning to leave out the yeast, sugar, other items that can feed the yeast, more on that later.

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The treatment in the US was long but short, on the first day, they took what seemed to be all my blood in my body, but that wasn’t too bad. I then saw the doctor, and he explained what they think was going on, what they would find from the test. After about an hour, I was sent to a room for some IV treatments. I had no problem with the IVs and even thought it seemed like forever for them to finished, I was on my way back to the hotel by 3pm. The worst part of the first day was that I had surgery on my mouth, before leaving Dubai, and I developed something called dry clot. It was pass painful, and thank goodness the center found me a very nice dentist.

On day two it was more of the same with IV treatments and me learning how to give myself a shot (which I totally hate). I was so tried that I sleep for most of the day, that was after Magnus found me earplugs and one of the nurses gave me an eye mask.

The third day in Atlanta was a free day, so we tried to catch up on some shopping and I really over did it. Magnus, could even tell that I over did it, big time, but the time was short. It rained almost everyday we were there, and most people would have been upset about that, but for us, it was really nice to see and feel the rain.

We returned on the fourth day to get my results and to get more IVs. The results told us a lot of things. I have an over growth of yeast (that isn’t something that I am proud of) I have a big problem with my iron levels, and thyroid levels are also low. It seems that my adrenal glands are not working as they should. The doctor believes that this may come down to me having the Epstein Barr Virus about 10 years ago. So, if you add all of this to my level Vit D3 levels, you can probably understand why body is hurting like it is.

One of the hardest things, was trying to get all of my meds and supplements together, to come back. We were in Atlanta for seven days, and it was a busy seven days. I wish I had more time, and also took it a bit easier, while I was there, I believe that would have made things a lot easier.

I cannot tell if all this money and treatment will all work, but it was nice to be in a place, where they did seem to have some kind of idea of what is going on with me and my Fibro.

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Last night on twitter @nursebc1974 posted a line about Fibro, “No winning with fibro.. just adapting.” LOL I think that is so true, because just when we think we have something figured out, something new comes up. you can follow me on twitter @cnystedt.

I would one day like to figure out how to get off all of the meds and not be in so much pain. This is why next month I am going to the US to get help. I am not sure where this journey will lead me, but I hope for the best and wish for much improvement. The place that I am going is Fibromyalgia & Fatigue Center, and they have some interesting theories on how or why we have Fibro. I had to fill out this 37 pages survey on my problems and they will take a lot of blood samples while I am there. In many ways I wish that I was leaving tomorrow for the treatment, but in other ways I am afraid, what if they can not help me? Then what will I do then??? I do have a lot of hope that they can help me, and I promise to pass along any information that I receive there, that may help you as well.

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Okay time for another update of how things are going. After what seems to be about 20 pints of blood we have found that my Vit D levels are way too low, that I might have celiac disease, my calcium levels are low (no surprise as my Vit D levels are low), and then after a few more tests they found out that my PTH is high and my Free Calcium level is High. So what does all this mean, well I am guessing a couple of different things.

First I have cut out all wheat from my diet, and that has been interesting, more about that later. I am making an appointment with a gastroenterologist about my celiac disease and an endocrinologist about maybe having Parathyroid Disease. That doesn’t help my low D levels, but I am guessing that we will get to that, at some points. Oh my test from the OB/GYN came back all okay, so that is one less thing to worry about.

So, how do I feel about all this, I am not sure. It is nice to try to figure out what is going on, but then sometimes it just means more doctors. I am about tired of the doctors, but I know that they are the only way we will ever figure out what is going on.

My doctor says that studies are showing that people with Fibro have low D levels and are having problems with gluten, and that seems to be the case with me. Let’s see what the other doctors have to say, before we know anything really. Will keep you update.

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Okay I went to see my not so favorite type of Dr., the GYNO, or better known in my house as the Woman Doctor. LOL But I really liked this doctor. I have been to so many of them, that it is just hard to go to them every year, or more. I had my PAP AND GENITAL SWAB, and this is always the worst. For me it is so painful, and I just want it over. I know most women hate this part as well, but the pain just seems to get worst, each year.

Okay back to way I am writing this post, the idea is that she is going to try to see if there are any hormone problems, that can be making my Fibro worst. We had a long talk and she is going to do a battery of test all during my next cycle to make sure everything is in check. So, all in all it was a good visit, and hopefully she can help me with some answers. Oh and my PAP and Genital Swab all came back okay, so that is one less than to worry about.

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Well today I started a new chapter of my Fibro way of life. Today I met Dominique from the Osteopathic Health Center here in Dubai. He is going to help me deal with the Fibromyalgia, with therapy. First he has given me some exercise to do while I work, in hopes that it will loosen up my neck and back muscles. Then he signed me up for pool exercise class. This is the first time that I have tried this, and I am looking forward to it. He told me it was up to me to let them know when I could not do something, because it was too painful. I think it is easy to forget sometimes that we can not just go all out for something, even though you want to. I learned that the hard way this week.

Sunday, I really started to hurt right after lunch time. It was like my body was in one big knot and someone was pulling it as hard as they could. Well normally I would just take some meds and go to bed, until the worst was over. No, I didn’t do that this time, I had a doctor’s appointment and I felt like I had to go. So, I got myself up and went. I made it there, but I was about to pass out when I arrived. So, I had to call someone to pick me up, because I could not drive. That is a lesson to me (how about try to remember that, for the next time! LOL to listen to my body, and everything will be much better.

Okay back to why I wanted to make this post. Dominique, was really nice and he took good care to not make Fibro worst. He knew I was in pain, and that we have to take things slowly. It is so nice to find someone that seems to understand your pain, and that you do have pain. He did not judge me, and you could tell he was there to help me. So, we will see how things go, but things are looking up. ( I just hope they stay that way

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This past week, I took a big step in my journey with Fibromyalgia. I went to a new doctor, and asked for help. ☺ My new doctor is Dr. Humeira Badsha, at Dubai Bone and Joint Center. She agreed with my doctor in Abu Dhabi that I do have Fibromyalgia, and that I need treatment. She wanted some test first and then some physiotherapy. Also she changed my medicine to the Fibromyalgia drug Lyrica. She also wanted me to see a specialist for my endometrios. So I will see Dr. Janeta with Infinity Clinic, next week. This is a new road for me, and I do feel good about it. My doctor in Abu Dhabi, Dr. Pierre Sejourne, died (my he rest in peace) and forced me to make a change. He helped me the most he could, and he also listened to me, that is more than anyone had done before. So I am on a new journey, and where this road takes me, I have no clue. I will try to write more, about this new journey, in hopes that it can help some one else.

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The most important thing we can give to these patients is understanding and support. Suffering from a chronic disease is hard enough without struggling with misconceptions and misunderstanding as well.

LD News

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I am sorry that I have not written in a while, and I hope to do better in telling my tale with Fibro. The last few months have been exciting, nerve racking, painful, tiring, and fun. I have started a new job that I really like, and I am doing new and exciting things. This job is keeping me busy and taking my mind off of the Fibro, to a point. I am having more pain with the Fibro, now that I am working a lot, and moving a lot. But in a weird way, it is making me feel more alive. I am working for CENTIMETERCUBE as their Marketing Coordinator. Most of what I am doing is a bit of uncharted waters for me, but that is the part of the fun.
So, how do I mange the Fibro now that I am working a lot, the stress of working, the pain of Fibro, and the other things that come with Fibro? Well I just take one day at a time, and hope that tomorrow will not be worst than today. I am trying to eat better, sleep, and take all my meds. But yesterday, I found out that my doctor died the day before, and now I have to find a new doctor. The problem, here is that many doctors do not believe in Fibro, and they think the person is just sick in the head. It even took a lot to get my records from the hospital where I have been seeing my doctor for a year and a half. He did not keep good records because, his other doctors in his group, would not have agreed to he way of dealing with Fibro. While I understand that, it just makes it harder for me, and I have to just start over. But maybe this is a good thing, and I will find a better way of managing my Fibro. So, here is to new beginnings.

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