And Now The Defense.....

In the spirit of equality, I felt it was only fair to show both sides of this mycoplasm debate.  Last night I found the two case studies mentioned in one of the documents.  One was done by the US Army and the other by the Department of Defense.  Their findings were pretty similar.  I could only find the Army study again.  Here is the link:

http://www.ncbi.nlm.nih.gov/pubmed/11218212

Last night I was up until midnight (which is really late for me).  I got caught up in a web tornado and couldn't escape.  My husband finally made me turn off the computer.  "This stuff is gonna make you crazy"  he said.  He was right.  I also spent too much time on the computer today.  The more I clicked, the weirder it got.  There are a lot of really scary conspiracy theories out there.  Some of them have some pretty convincing data backing them up though.  I looked at message boards, US patents, blogs and research papers.  All I can say is, I think there are a lot of questions that need to be answered.....truthfully.   And if this stuff is true, we've got a much bigger problem on our hands than we ever thought we did.

I'm still waiting for my doctor to call me back.  I'm still feeling pretty lousy.  I guess she's trying to get a hold of her Rhumatologist friend.  I don't know.

Articles Comparing Gulf War Illness & Fibromyalgia, etc.

The other day my husband was searching the web for information about Gulf War Illness.  He served in Desert Storm & Desert Sheild and had some friends who were trying to find info about it.  He stumbled across some very interesting articles.  Basically, there is a group of doctors and scientists who have a very good theory about GWI, Fibromyalgia, CFS, etc.  They believe that they are actually all the same disease and may be caused by Mycoplasmal Fermentans which is a form of cellular bacteria.  I'm not a scientist so I won't go any further down that road.  Below are several articles from different sources that talk about this more intelligently.  Apparently one Microbiologist cured his daughter (a Desert Storm Vet) of GWI by administering long term Doxycycline (an anti-biotic).  One of the links has a paper written by him that was published in the International Journal of Medicine and another in the Journal of American Medicine. 

I'm always very sceptical about government conspiracy theories, but this seems very plausable.  I'm going to show the articles to my Dr. (who is very open-minded) and see what her take is.  If this is true, this is HUGE!  All the people that suffered for so long could have been healed using simple antibiotics.  Wow!

My husband is going to visit the VA hospital next week armed with the reports.  He has had mild GWI symptoms since he returned from the war, mainly fatigue and depression.  I'm sure they will deny that GWI is infectous and transmittable.  The official CDC definition of GWI is in one of the links.  Of course it doesn't mention Mycoplasmal Fermentans.

CDCs Definition of GWI  http://www.cdc.gov/nceh/veterans/default2g.htm

Article by Marjorie Tietjen "What Chronic Disease Have You Been Labeled With?" http://www.bariumblues.com/designer_diseases.htm

Gulf War Illness Research  http://www.immed.org/illness/gulfwar_illness_research.html  I suggest reading the last artical listed in the "publications" section - "Mycoplasmal Infections and Fibromyalgia/Chronic Fatigue.......".  It's an rtf.doc file.  Also, two articles above that one "Doxycyclene Treatment.....".  is good too.  There are many more.

Mycoplasmas - The missing Link in Fatiguing Illness   http://www.prohealth.com/library/print.cfm?libid=7933

Official Testimony to House of Representatives - Commitee on Government Reform  http://www.gulfwarvets.com/testimony_2.htm

Happy reading!

Pea Soup Thick Fog

I am so frustrated with never knowing where anything is or what day it is or what I'm supposed to be doing when I get somewhere.  Today I got my daughter all dressed up, I put makeup on and I dragged my husband out.  The local newspaper had called for all 2010 babies and parents to meet at a local restaurant to get our pictures taken and have a pizza lunch.  I'd entered the date and time into my Blackberry.  When we walked into the restaurant and saw that no one was there, I had a bad feeling.  I walked over to a waitress I knew and told her we were there for the newspaper picture.  "Oh, that was yesterday" she said.  I looked at my husband who was understandably annoyed.  The waitress told us to go down to the newspaper office and see if they could take the picture today.  The office was closed.  We walked home and I apologized for my screw-up.  The walk had left me physically drained and soaked with sweat.  When we got home I looked at my Blackberry and realized that I had marked tomorrow as the date for the lunch.  Not only had I shown up on the wrong day, but I hadn't even shown up on the date I had put in my calender.  I called the editor of the newspaper when we got home and left a message on his voicemail explaining the situation.  Then I broke down.

I cried hard for about a half hour.  This constant confusion was really starting to scare me.  My husband tried to console me, but I just laid on my bed and played a game on the computer.  About ten minutes later there was a knock on the door.  It was Hannah, our babysitter.  I had asked her if she could pull some weeds for me since the hotels gardens were getting so overgrown.  This only made me cry harder. 

Gardening has always been my zen time.  I love playing in the dirt and experimenting with new succulents I find in the wild.  In the past, gardening has helped get me through some tough times. A few days ago it was really warm so I decided to enjoy the weather out in the garden.  After about 10 minutes after weeding and pruning I was sweating profusely and lightheaded.  I went back inside and felt horrible for about the next hour or so.  Obviously I wasn't going to be able to take care of the grounds while I was experiencing a flare.  I wonder if  this flare will ever end?

Dire Prognosis

I've been researching the causes of Fibromyalgia.  Of course no one really knows the cause for sure, but there are many theories.  Just like the myriad symptoms, theories of it's cause are equally scattered.  I have not found anything however that questions an environmental cause.  I admittedly haven't researched this subject that well but I'll keep looking.  Environmental causes need to be explored.  Unfortunately fibro doesn't have much history since the diagnosis was only defined in the 1970's I think.  There doesn't seem to be any data as to whether instances of fibro have increased, decreased or stayed the same.  I learned that in the past, especially since most sufferers are women, Dr.s wrote the symptoms off as hypochondria or some other psychological disorder.  How horrible that must have been.

I haven't really found anything very encouraging.  The consensus for many is that you just have to modify your life.  That there are just some things you can't do anymore.  This is so depressing.  It may be true, but I'm just not ready to admit it yet.

I went to the Dr. today.  She's a GP so she doesn't know a lot about fibro.  In fact she said that she's learned everything she knows about fibro since treating me.  Since I can't afford to go to a Rheumatologist, my GP sees me, I tell her what's going on, then calls her Rheumatologist friend and he advises her on how to treat me.  She said she'd be calling me within' a week.  It's a pretty pathetic system, but it's so nice of her to make the effort for me.  She's very understanding about my financial situation (which is pretty bad).

Sleep is Key!

I had a great nights sleep last night (my daughter slept through the night).  I feel pretty good today.  Sleep is so the key to how I feel.  Trouble is, with a baby and the sleep problems that come with fibro, I don't always have control over how much sleep I get.

I was reading someone else's blog about fibromyalgia and she mentioned that there were new studies that show obesity as being a factor in controlling the disease.  She was of course furious with these "findings".  I posted a comment on her blog  conveying my anger at this idea as well.  Then I did some googling on the subject.  I don't know who paid for these "studies" but I think they got ripped-off.  Obviously obesity would be a major factor in controlling fibro.  What they didn't bother to "study" was what BMI's or weights fibro sufferers had BEFORE becoming ill.  I think in many, even maybe most, cases fibro CAUSES obesity.

My fibro really took off after I gave birth to my daughter.  I gained 50 pounds during my  pregnancy.  I wasn't able to exercise due to extreme fatigue that I now know was fibromyalgia.  I lost 25 pounds at the hospital after delivery and haven't lost another pound since (almost 1 year later). Before I got pregnant I was a very healthy weight, exercised every day and ate well.  Now I'm not really able to exercise. Any time I try to (even  low impact walking) I end up being sick for the next two days, laying on the couch and not being able to do much of anything.  It's not due to pain that I can't exercise.  Even the smallest amount of exertion and I feel like I'm going to faint.  I start sweating PROFUSELY followed by chills, I feel very short of breath, I get chest pains, my heart flutters and my muscles burn like I just ran a marathon.  I think if I did actually push myself I would pass out.  I also get a sore throat and my voice gets horse.  It's such a bizarre set of seemingly unrelated symptoms.  Sometimes I can actually understand why some people think it's all in our heads.  It just sounds crazy!

I'm so frustrated.  I don't know how I'm supposed to loose this weight when I can't exercise.  I may end up becoming one of these obese statistics too.  How depressing! 

No Bitching This Time...I Swear

I know my last post was pretty pathetic.  To be honest I felt pretty pathetic.  Still do. 

Anyway, I found out that laying in the sun is almost as therapeutic as a hot bath.  I don't have a bath tub so I've had to rely on hot showers to relieve muscle and joint pain, which really isn't the same.  Yesterday we went for a walk with our daughter in her stroller.  My husband had to pick up his paycheck and I didn't feel well enough to walk the distance.  Since it was a beautiful day I decided to sit down by the water with our daughter.  I laid down on a bench in the sun.  Almost immediately, the pain in my joints started to fade.   It had a similar effect as sitting in a hot bath. I almost fell asleep it was so calming.  I'm lucky that it's sunny most of the time here.  I think even laying on the floor or sitting in a chair at a window in direct sunlight may have a similar, if not as intense, an effect.  I just thought I'd pass that along to other Fibromyalgia sufferers out there.  I don't know about all of you but any small thing that can relieve the pain and discomfort even temporarily is a blessing.  I'll have to experiment to see if it has any lasting effects (I mean in the way of hours or even an hour).

Sick and Tired

I feel horrible today.  I almost feel as bad as I did at the start of this hellish journey.  I've been faithfully taking my meds.  I don't understand why I feel this way.  It even hurts to type.  I'm so discouraged.  We were supposed to take a walk for lunch at one of our favorite restaurants but I wasn't able to.  I felt short of breath and my legs just couldn't move very much.  I'm also having these weird heart flutters again.

Well, I guess that's enough bitching.  I went to an AA  meeting last night and it was really great!  One of my good friends who I hadn't seen in a long time was there too.  There was someone at the meeting who was celebrating 60 days of sobriety.  The topic of discussion was the second step.  I have often had a hard time with since I consider myself agnostic.  She shared her difficulty with finding or believing in a higher power, God.  I then shared the way in which I deal with the second step.  I hope she found it  helpful.

My daughter is desperately trying to grab my laptop and press all the buttons.  For some reason she has a lot of energy this evening.  I wish I had just some of that.