Poll for Members' With Fibro

[PlateletGal]

I was just wondering how many of you would support a "Living with FIBRO/CFS" board ?  I know there are so many similarities with our conditions and many people who have fibro often have signs of CFS and vice versa.

Please let me know what you think and if you guys would like another board, then we can notify Med Help.

[Curls]

Eliminating foods will often help but it isn't necessarily a ph balance thing.  Are there any foods you cut out all together, like dairy?  What have your major changes been?

It's great!! that this is helping you.  I'd like to understand further and my instinct is that it's a food elimination thing.  Of course, what's good about that for you, is that you might be able to eat more options and keep the same improvements.

Are you using products too as plateletgal did?

[PlateletGal]

"The pH Miracle" by Robbert O. Young and Shelly Redford Young...

Hi Sandy,

I have been there and done that one ! I purchased their Super Greens and spent over $300 on their products. They certainly helped with detoxing, but didn't solve the problem for me.

[Sandy Sue]

Eventhough I am writing this to PlateletGal....this is to everyone who has Fibro and all the "wonderful" little side effects that goes along with it. While this information isn't a question..It IS very important to all those who have to deal with this day in and day out...I am 39 yrs old and have had Fibro for as long as I can remember...At least since i was 10. I deal with the Chronic Fatigue, body aches, IBS, Diabetes, etc, etc, etc, all the "joys" of the dis-ease. Now, both of my children (age 13 and 16) are showing signs of having Fibro. When that started happening, I got really serious about finding the "why" behind all this madness! I am now very very excited about a book that I found that FINALLY...gives me answers that i never got from Dr.s before!!....Questions like....WHY do My children and I have this? (why me?)...and how do I live with it....but most importantly.. is there a way to get rid of it?.....I am happy to say that I did get answers! The answer was YES!...there is a way to help get rid of....or lessen the ravages of this dis-ease!...I have been reading the book..."The pH Miracle" by Robbert O. Young and Shelly Redford Young...What he has to say will change not only your way of life...but the way you think about certian foods. (and yes, there are some you probably wont want to change but you should lol) I have had more results with this "treatment" than ANY other...because it is all natural..it is something that everyone can do! (without high Dr. bills haha!) if nothing else..you may find the answers that I did on Why we hurt the way we do....and what can we do to help it. My energy lvls have gone up...my blood sugar lvls have become normal, and my thinking is clearer and "fibro-flares" are all but a thing of the past! Best ever though is that my children are doing better and I am seeing a major change in them =)...Please..., If you are like I was....looking but not finding any real answers...Get the book!...It can change your lives!

May God Bless you All !

"What lies before us, and what lies behind us, is nothing compaired to what lies within us!"

[PlateletGal]

"but have set up a support system and all I can do is hope for a cure!"

That's wonderful and I wish you the best with this trial. Keep us posted if you can.

[ocelopili]

Hi, I dont know where I got the C.Pnuemonia. I think if we had healthy immune systems, we would not be sick from these things.  But its like the chicken and the egg...did a broken down immune system (environmental and emotional factors) lead to all these viral infections or did a viral infection cause subsequent poor immunity which led to more viruses????...I guess it doesnt matter that much now if they found all those viruses, we have to find a way to reduce them and strengthen our immunity. I have a cough but that has not been the main focus since I have had 5 rounds of meningitis, DDD and suffer from debilitating back pain. It all seems to be part of a larger complex of a malfunctioning immune system and breakdown of functions of the body. I also have very high EBV number among other viruses that were found. I am trying out Valcyte now, I am on the second day. I feel it very burning in my body. I only have 5 months and 28 days left on this drug!! Wish you luck in finding a cure!!!!

[ItalianMama3]

I have C. Pneumonia antibodies myself and I'm not a smoker but my parents smoked around me as a child but for only a couple of years, before they caught on to the not smoking with your kids around. They both had quit by the time I was 4. Now 34 no one around me does but I did a bit of social smoking in high school. My Dr. gave me the impression that C. Pneumonia I could've gotten it from anywhere, it’s breathed in.

I cough occasionally only when I deep belly laugh and then it sound like a real nasty cough. I never had that before I got a cold about 5 years ago and so did my kids and we all were using a Nebulizer for that cough 3 of us were borderline Pneumonia. But it wasn't until Oct. 05 that I diagnosed with CFIDS and Fibro. I have a high EBV number too and wasn't sure if you have that as well. Do you feel the C. Pneumonia is from when you lived in Mexico?

I keep thinking that if we can find a link that most of us have had contact with that may be the cause of all these people like us who suffer from an illness that seems so unknown at times.  

[ocelopili]

Hi, Im back again after a little break..........
It was too painful for me to be on my computer sitting up for any length of time so I got an Air Desk and a laptop and rigged it up over my bed so I can type laying down with my elbows propped up on some pillows.  Its a little precarious but does wonders for my back pain and keeps me connected with people even though I am laying down.
FMX smoker...I quit the first time before I was sick, I was practicing yoga and meditation and smoking gave me a migraine.  Then I started again years later when I was living in Mexico for a few years and surrounded by smokers.  This time, I took wellbutrin, used the patches and listened to the tapes and was able to quit, although I was still smoking in my dreams for quite awhile afterwards. Its been 10 years and smoke free now, although I do have a chronic cough which I attibute to smoking in Mexico city with all of the pollution.  I also have c. Pneumonia antibodies...high titers..which I am sure contributes to that.
Wish I had never done it, I was surrounded by smokers as a child.  Now I am just trying to get a handle on my life again but am very sick and cant do much. I will start the Valcyte on Sunday. I am a little nervous about how it is going to affect me but have set up a support system and all I can do is hope for a cure!

[ItalianMama3]

Sorry everyone,  I repeated myself a bit in first paragraph from my last post. I didn't realize it was so close.  :)

[ItalianMama3]

Well I've had the diagnosis since 11/05 and even my dr. feels its been a lot longer in hind sight. We had just kept trying things year after year, she kept telling me your life is so busy you have a family...... It took me telling her: "I feel like I'm dying"...then she really goes to work and I find out in a week.  CFS

Managing myself: So its trial and error. But I seem to really have a hard time still judging my energy and knowing when to back off even after 2 years. I have 3 kids oldest is 12 so she is a huge help, than 8 year old and my youngest is 4. Obviously your pushing, pushing daily to meet mom demand.

What things are you all really changing to make a difference in your energy and strength?

Cause if I feel good and it's sunny out, I'm strapping the kids bikes to the rack and we head for a trail and ride a little while or go for a walk..............Then not feeling well strikes again.

I know I need to rest and to not over do so I can get better, but I also don't have the luxury of getting to push a pause button on the remote to stop time so that their lives just don't pass me by!

Anyone else have kids, what works well for you?

[PlateletGal]

My EBV titers were off the charts. I know the CDC says that if you have EBV and still have chronic fatigue (not to mention that other symptoms) for at least 6 months, then you should talk to your physician about CFIDS.

I haven't tried that SamE product yet.... I can't now because I'm on this research protocol, but after I finish the protocol, I plan on going back to my Naturopath.

[ItalianMama3]

Grailhunter : you said you tested positive for EPV and yes it its in everyone system but at high levels and if it's not going away its usually Chronic Fatigue Syndrome.

I told my dr for years how fatigued I was year after year until 11/2005 I went in and told  her I was dying. (I'm 32 (at the time) have 3 kids I've always been really active worked out, had a job)... but I feel like I'm dying. So she ran a bunch of blood work and one for Eppstein Barr and it came back high like 200, and then we re-took it in 4 weeks. Just incase it was reactivated mono. Came back 195 super high. There are only two reasons for it reactivated mono and CFIDS - I knew I had CFDS.

I immediately went to the Fibromyalgia & Fatigue Center www.fibroandfatigue.com and they did a whole work up of blood somewhere around 50 tests. Anything from EBV, lyme, candida, lupus, hormones- checking everything to make the most educated decision.

I was most impressed, and by the fourth visit most people have marked impovements. I'm a bit harder case to crack but I stayed there for about a year always getting great care. They do mostly holistic metheds for treatments and IV therapies. Heberal suppliments and use a compounding rx for others items needed. Worth looking into for one in your area since they specialize completely on these illnesses!

Everyone is different but I wanted to mention my cousin uses a product called Sami for his Fibro and changed his enviornment completely by moving and has gone totally vegan and has improved by 90% in like a 2 month period.    

[PlateletGal]

"I totally agree with your comments about something in our "today's" world that is causing this epidemic of CFS and fibromyalgia."

I agree with you guys as well. I know that physicians' are looking into global warming, vaccinations and other possible causes of immune dysfunction.

[LLWB]

I quit for 3 weeks recently to help my cervical dis fusion. Then went right back. I find it almost impossible to quit, once quit for 3 years, then went back., I know that it does increase the pain. It contracts your blood vessels, so you aren't getting oxygen to your cells. Amazing that the surgeon general advises quitting smoking, and the government subsidizes tobacco farmers. Fibro sucks.

[Julie07]

HOW DID YOU QUIT SMOKING????  

[PlateletGal]

I agree with you about the lyme testing. I did hear something interesting though last week about lyme disease. I can't remember the source, but they said that if you've have had lyme disease for a long time, then you will never test positive for lyme disease. I do know that both Fibro and CFS patients' have had bacteria detected (mycoplasma) in their tissues. That probably explains why a fibro tissue bank recently was set up in Phoenix, AZ.

[PAIN in FL]

Check aggressively into Lyme Disease with an Infectious Disease Doctor literate in Lyme Disease.  FM can be cause by Lyme or a misdiagnosis thereof.  I am currently in the process of the whole Lyme situation after having been diagnosed with FM 2+ yrs ago.  I have suffered severely for over 6 yrs and progressively have gotten REAL bad, (currently on Fentanyl patches).   I am just curious if that might point you in the right direction. Good Luck & let me know!

[Jade59]

That comment to PlateletGal re: laying down to use the computer was obviously for you.  I'll get this
right.  I am certainly completly stressed out now so I should stop and go to bed.  

[Jade59]

OK try again.  I have seen you on other sites or responding to others on this site and you seem very
knowledgable so I would love to hear from you.  This is such an AMAZING tool, I only discovered this
a few weeks ago (chat rooms and the internet period) and I am in awe at all the information at hand.
I am still trying to figure out how to post w/o it breaking up.  Your laying down to use the computer?  
I wonder how that works?

[Jade59]

Thank you for your response to my smoking post.  Your comment on needing antibiotics as a child was like a light going off.  I too needed those meds for chronic ear/kidney infections until my adnoids
were removed at age 5.  I was sexually abused by my alchoholic father and my mother took out her
rage and frustration with a belt and especially liked to slap across the face.  I have always been extra
sensitive to pain (this wasn't believed of course) which I just read today on an FM site is called "Allodynia" .  I am brand new to the internet and have only begun researching FM as well as
"Borderline Personality Disorder".  I also read today on that same site that smoking will cause more pain for a variety of reasons.  My response is slow because I didn't know how to check my e-mail and I also don't know how to post w/o it showing up the way it did the first time.  Lower case like this
maybe?  I had no idea these sort of chat rooms existed and now for the first time I don't feel like I'm
crazy.  I am on week 6 smoke free and I have to say I feel very wound up and have alot of trouble
sleeping and thinking straight and since I cannot sit still I seem to have more muscle pain than before because I am cleaning the house constantly. I need to find a doctor whose specialty is FM.  I dont know if that is a Neurologist or Rheumatologist.  
  If I am rambling please forgive-I think I also have an anxiety disorder.  I now remember why I
began smoking in the first place because I felt exactly like this as a child and young teen.  I thought if I quit smoking and eliminated the pain meds I would feel better, but I think I was wrong and didn't understand how FM worked or how permanent it is.  Oh and I also have DDD in my cervical and
thoracic as well as herniated discs.  How do you know which problem is the REAL problem?

[PlateletGal]

"I am a little nervous about the amount of illness people are experiencing on this drug and trying to set up a support system since I live alone."

Valcyte is a pretty powerful drug, but I've read that Dr. Montoya is monitoring his patients' closely. I wish you the BEST OF LUCK with this research protocoll. Please let me know the outcome !!

[ocelopili]

I smoked at age 14 until 21 and also my mother smoked when she was pregnant with me and while nursing me.  I also grew up in a very abusive situation with a rageaholic father who hit me constantly.  I was given alot of antibiotics for my chronic cough as a child (didnt anyone figure it was from second hand smoke?), and also allergy shots.
All this set me up for a disaster of an immune system.  At age 18, I had viral meningits which reoccured 4 more times over 25 years.  I also was found to have high antibody titers to HHV6,
EBV, Parvo virus and C.pneumonia.  The virus causing the meningitis was an HSV virus, a simple cold virus that, instead of a cold sore, went into the nerves of my spine and infects my brain.  Hows that for a messed up immune system.  I will be starting Valcyte under Dr. Montoya soon...but going back to the original cause, it was a disasterous childhood that never allowed my immune system and nervous system to develope in a healthy way, and yes, Im sure cigarrettes contributed to that among other things as well.  Going back farther than that...who knows why we are born into these kinds of situations and others are not?????? All I can say now is that I am dealing with all this, have left my job, I still managed to work as a teacher for many years with all of this as I am a fighter, but finally got on disability now and will devote all of my energy to getting better.  I have FM/CFS from all of this, but I am still alive so there is hope.  Heres to all the survivors out there!!!!

Platelet gal- thanks for your response.  Yes dr. Montoya will oversee the valcyte but my regular dr. will oversee the blood tests weekly and I will visit dr. montoya once a month.  I am a little nervous about the amount of illness people are experiencing on this drug and trying to set up a support system since I live alone. I have rigged up my computer over my bed and now can write laying down.
Frida Kahlo did it with painting, so I will do it with computers.  Its nice to have a connection with others going through this, even though I may not be able to get out of bed on some days. I will be checking the other sites as well.  Stay in touch!

[PlateletGal]

I don't smoke. I don't have Fibro though... I have CFS.

[Jade59]

THIS MAY SOUND SILLY, BUT DOES ANYONE SMOKE?   I JUST STOPPED SMOKING AFTER
32 YEARS AND MY PAIN LEVELS HAVE GONE DOWN BY 50%.  FM IS A VERY STRESSFUL
CONDITION AND FROM WHAT I HAVE READ, MOST CAN TRACE BACK THEIR SYMTOMS
TO CHILDHOOD DISEASE/TRAUMA.  I STARTED SMOKING AT AGE 14 AND IT IS UNBIELEABLE
HOW MUCH BETTER I FEEL AFTER 25 DAYS NICOTINE FREE.  I AM CERTAIN NICTOINE AND
ALL THE POISONS IN CIGS HAD ALOT TO DO WITH SOME OF MY PHYSICAL PROBLEMS.      
AND BY THE WAY, HOW DO YOU ALL SIT IN FRONT OF THE COMPUTER TYPING AND USING
THE MOUSE?  THIS IS SOOOO PAINFUL TO SIT HERE SO STILL.

[PlateletGal]

Hi ocelopili,

I do know about Montoya's trial and had my physician check my HHV6 titers. If the protocol I'm on now doesn't work.... I can use that drug as a back-up later on.  I know the anti-viral drug he is using is very strong and he has to closely monitor all of his patients' and check their labs weekly. Dr. Podell has some information on this on his website and Dr. Mark Shaw has information on this drug trial as well. Since we can't give links, you can find Shaw's article by googling "What Causes FMS & CFS" + "Mark Shaw" + "Part 2"  --- it is the second part of the article.