Who has showed inprovements this year 2008???

Discussion in 'Fibromyalgia Main Forum' started by morningsonshine, Nov 30, 2008.

  1. morningsonshine

    morningsonshine New Member

    Just wondering, as we come to the close of this year. Who has showed inprovements in there battle with these chronic illnesses. And why do you think you've had improvements.

    What ever name you would apply to it; CS/ME/FM, i've started out more in the CS but seem to have swung into the FM with lots of increased muscle pain and tenderness.

    My CS symptoms have improved some, i have been more active this fall than i've been for a long time. But have been down since the cold weather started.

    I started the Methylation, but couldn't stay on it, I've cut gluten out of my diet, and that really helped my stomach, and anxiety attacks. Not gone but much less, and less severe.

    I'm still taking the sublingual B, and the vitamin suggested for the methylation.
    I've added rice protein to my diet for more protein.

    I think from 1-10 my improvement has gone from about a 2 or 3 to a 3 and 4 at times.

    I'll take any improvement i can get, but still frusterated.

    Would like add more things, but i'm very slow at change, and struggle with motivation, sleep, sleep, sleep when i can.

    [This Message was Edited on 12/01/2008]
  2. cordy250

    cordy250 Member

    I actually think I feel much better than last year. Although I have not accomplished any relief in pain levels, to me the fatigue was much more damaging. As a result, I don't actually "feel" much better, but when I look at my activity levels and what I have been able to accomplish as far as physical tasks in comparison to last year, I am way ahead.

    Last year I just wasn't able to get anything more done than I absolutely had to. This year I have been plugging away all summer and I have a lot to show for it.

    I noticed this improvement shortly after I started using FRS Healthy Energy products and it has stayed with me. I think I have been using them for about 8 months and I continue to be able to get out and do things in spite of continuing pain problems and an acute rotator cuff situation which is severely limiting the use of my right arm.

    There is hope. It may not be a feel good all over remedy, but even subtle changes can make a huge difference in the quality of life.
  3. ladybugmandy

    ladybugmandy Member


    i could barely get out of bed last year, could often not remember what year it was, and was thinking of ending it. this year, i have been seeing dr. lerner and am about 20-30% better on antivirals.

  4. TigerLilea

    TigerLilea Active Member

    I have been doing Dr. Martin Pall's protocol this year, and so far, I have not shown any improvement. Each year I seem to be more exhausted than the previous year. I am now coming up to 18 years since I first came down with CFS.

    In January 2009 I am going to start the Sarah Myhill protocol. I'm determined, one way or the other, that I am going to get better, even if it is only 25%. That would be a huge improvement over getting worse each year.

  5. Larac.

    Larac. New Member

    I am able to get out of bed, not always sleeping and seeming like I am in outer space---I have found 3 meds that work for me--

    I am always looking for ways to improve with my condition--I do alot of research--

    I read the FDA is working on 20 new drugs for fibo patients that can be out by end of 2008..

    I keep my self edited on fibro and mange to keep myself going...

    I used to take all kinds of pain meds--I told dr no more--they do not work

    I started writing a book about living life with fibro-and the different hurdles I have overcome..

  6. stschn

    stschn New Member

    I have been working with Dr. Montoya since July 2007 I did the 6 months on Valcyte and am currently on 1500 valtrex. I am very pleased with the fact that I have gotten cognitive improvment. I'm sleeping most nights without any thing other than isocones which are acupressure points that work on the H7 pressure point (yes it was a big surprise to me too). I am out of bed most days some still being better than others in fact I only remember 5 or 6 days bedridden in the last 6 months or so. I know that some of that improvement has come because I am finally takeing better care of myself and every time I've relasped it is because I've over done. I still hate a messy house but I live with it. I don't try to cook I order from Schwan and just reheat what they deliver to my home. I have a powerchair,a wheelchair, a stairchair, and a shower chair (and a credit care debt as a result) but my heartrate monitor shows that I am not over working my body. All I need now is for it to set off an alarm saying slow down dummy when I do!
  7. Heyygirl

    Heyygirl New Member

    Seeing Dr. Holtorf for about a year and a half. Some things we have tried help, some haven't but overall MUCH more active and capable of functioning. The last few years, all I could do was go to work (I am a 2nd grade teacher) and go home to bed. Nothing more. Now I am able to do things after work about every other day and the fatigue "crashes" are gone. When I get a "cold" which is most of the fall, I can function through it rather than having it put me to bed. I would have to say that while I get "tired" the "fatigue" which is an ENTIRELY different thing, is really about gone. I still pick up everything that the kids bring, but am not ready to retire every time I do.


    Let me also say that the bloodwork shows I am still fighting something...C4a and C3a levels are high, all the virus panels show activity, but the lumbrokinase for the coagulation defect created a HUGE Herx effect last summer and things began to get better slowly a few weeks after that was over.

    I have no thyroid, adrenals are shot total hysterectomy due to fibroids...endometriosis found everywhere...cataracts at age 35.... yada yada yada. The newest attempt is a product under his name called Virunex which is herbal based and the lymph nodes in my neck are not swollen for the first time in many months. Coincidence? Dont know. Also he took me off the Armour thyroid since the Reverse T3 levels were so high and we are still titrating that dosage.

    I am not sure I totally appreciate the order of the protocol he uses, as the coag defect probably resulted in a needless expenditure of money on meds that were not penetrating the capillary walls. But, over time I am very happy with results. Time will tell. Oh, and I still deal with brainfog.

    [This Message was Edited on 12/17/2008]
    [This Message was Edited on 12/17/2008]
    [This Message was Edited on 12/18/2008]
  8. ladybugmandy

    ladybugmandy Member

    lol i am always blown away by your intelligence. i could never keep track of all that stuff!!!!

    glad you are doing better:)

  9. dragon06

    dragon06 New Member

    Since I have been diagnosed with new chronic illnesses this year, Intersistial Cystitis, Vulvodynia, Vaginismus and Damaged Pelvic Floor Muscles, on top of my FM, CFS, GERD, IBS, Hypertension then I would have to say that no I do not feel that I have improved any. My FM and CFS are being mostly controlled with my current treatment, meaning they have not gotten worse but have stayed the same as they were at the beginning of the year, but I am definitely not better.
  10. morningsonshine

    morningsonshine New Member

    I thought this thread got buried awhile ago, glad to see it back up!!

    I really enjoy reading about what others are doing and any small improvements, I think it's good to focus on the positive sometimes.

    And sometimes our improvements are so slow we don't see it until we reflect back. So thanks for sharing, thought it would be a good way to end this year, and think of the new one.

    Hopefully it will be encouraging to us all.

    Thanks for sharing!!

  11. Forebearance

    Forebearance Member

    Hi morningsunshine and all!

    I have had improvements in 2008.

    I think it was because of three things. First the enzyme pills Candidase and Virastop. They are just good general background maintenance things for me.

    Then the simplified methylation protocol supplements I've been taking. They have helped me get off of some hormone supplements and sleep better and start to get thinner.

    Then the extreme mold avoidance I tried this year. I moved and started over with all new stuff. I don't feel like I'm half-dead any more. I have more energy.

    But I'm still in the process of detoxing all the neurotoxins in me, so I still feel really tired. But it's like a regular tired, not the paralyzing fatigue of CFS. I have been taking cholestyramine and soluble fiber to remove the poison.

    I keep getting gradually better, so I have hope for 2009. I may have some significant improvements in the future. And I keep getting better at doing the mold avoidance stuff. It's a strange lifestyle, but hey, I really want to get well.

  12. Cinderbug

    Cinderbug New Member

    I am amazed at how much better I have felt the past 3 months since using C-pap at night and Provigil in the a.m.

    I'd say I have gone from 10% for 3 years to maybe 40 or 50 %. Huge difference and I hope it continues.

  13. Sheila1366

    Sheila1366 New Member

    I have been in the worst pain this year. I was able to drag myself into a gym though. Pain was so bad at first I almost quit. But now a month and a half into exercising I am able to get out of a chair without as much pain. I don't walk slumped over and my ankles aren't killing me as bad. Overall I am better, not a 100% but better.
  14. 28years

    28years New Member

    I’ve had definite improvement in 2008.

    Some quick background. I’ve had severe, progressive CFIDS for 28 years. I’ve been virtually housebound for many years and spent much of the day in bed. I am a 2 on Dr. Lerner’s energy scale. I saw Dr. Lerner and he gave me a protocol for my local doctor to follow. I started with 1 gram of Valtrex four times a day at the beginning of August. I’m still at that dose. I’ve had the following improvements.

    – I can feel my legs for the first time in a year and a half,
    – I can think more clearly, and I don’t get confused anymore,
    – according to my brother, my diction has improved,
    – according to a number of my relatives, I appear more animated,
    – just in the last few weeks my walking has begun to improve, but still not great, but it’s defiantly better –I used to use my scooter inside all the time, now I frequently find that it seems like too much of a pain in the neck to use a scooter, and that it’s actually easier to walk (e.g. from the couch to the kitchen)

    I recently went to a Christmas party with my family, many of whom haven’t seen me in months or a full year. Everyone remarked about how much improvement they had seen in me.

    Also my local doctor had been extremely skeptical about following Dr. Lerner’s protocol. Then she saw me about three months after I started the treatment and she noticed a definite improvement in me. She noticed specifically that I got less fatigued during our appointment and that my thinking was clearer. She now considers Dr. Lerner ‘The Expert’ and doesn’t want to deviate from his protocol at all. Which I think is good.

    Despite the fact that I’ve had all this improvement, I’m still housebound, I still spend most of my day in bed and I still consider myself a 2 on Dr. Lerner’s energy scale. But I’m only four months into the treatment and I am ecstatic that I’m getting any improvement at all.
  15. kjfms

    kjfms Member

    I have been doing pretty well. I am back to work full time and loving it!!

    I still have my bad days -- probably always will...

    I still have a lot of pain but I am managing to push [gently] through it and continue my work day -- most of the time...LOL

    I am basically on the move all day but I do not have to be in one place the entire day and I do believe this is one of the key elements in my improvement.

    Some days are really bad -- like today -- the weather and a stressful day!!

    Hot soaks in the bathtub, a lot of stretching and prescription pain medication combined are of great help me... for the most part.

    I do not know if I am stubborn or just plain stupid but whatever it is it seems to be working for me. I have found that when I am not working and staying busy I am a mess physically and mentally...but I am happy and that is the most important thing.

    I still have problems (as do we all) with sleep issues and there are days when I am just going on auto-pilot...

    I apologize for rambling but I have been on here for a while.

    Best of luck to everyone here and enjoy the holidays,

    Karen :)
    [This Message was Edited on 12/24/2008]
  16. PVLady

    PVLady New Member

    I had huge improvements this year and looking back it is hard not to be angry with a doctor I had for many years. My fibro and CFS are a separate issue but for several years (over 5) I suffered with undiagnosed gallstones. When you already have fibro, anything additional just puts you down. I believe my fibro and CFS related to a very high level of Epstein Virus - mine is over 8,000 with a norm of below 100 on the lab slip.

    For the final three years before I received the gallstone diagnosis I was in the ER twice a month with severe nausea, etc. For the last year I could not eat and was in bed and lost over 50 lbs. It is not like I was not asking for help, he was just not giving any. I did try to go to other doctors but no one thought to do a simple ultrasound that would have diagnosed the problem.

    Also during that time I had to keep running my business, thank goodness I had a person working for me that literally carried the ball. I still had to take a business trip every 6 months and that was very difficult, to say the least.

    Finally in late 2006 this doctor went on vacation and the doctor who filled in caught the problem. I had surgery in Nov 2006 but I had been so sick for so long, it took a year to really feel better. After surgery I was alot better right away but not even close to how much better I am now.

    So now that I am soooo much better, I look back and just wish someone would have helped me sooner. I know there are others here who also have problems and doctors are not really helping.

    I want everyone here to know that the symptoms of gallstones are not always like the textbook, in fact my surgeon said is is very common for doctors to miss the diagnosis. The problem is, in addition to ruining your life, they can kill you.

    If they start moving, you are in trouble. If you discover them you can have laparoscopic surgery which is easier. If it becomes a emergency, they have to do major surgery and there is a risk of damage to the common bile duct. If that happens you are very sick for the rest of your life, in addition, you liver can wind us failing.

    If anyone here has symptoms of gastric reflux, aching in right upper back area, around shoulder blade, nausea off an on, poor appetite and getting full quick, you might have gallstones.

    It is so easy to have a ultrasound. By the way, after surgery I did not have any bad side effects after the gallbladder was gone. I had laparoscopic surgery and they say you can go home the same day but I was so sick by the time I had surgery, I stayed in the hospital 3 days.

    I still have sleep problems but thank goodness not the terrible pain I once had.

  17. laura3510

    laura3510 New Member


    My name is Laura and I started my path on fixing my health problems with Holtorf. The only think I ended up continuing with them was the thyroid. But recently I add some viral panels to my blood test and showed positive for EBV and DMV. Doc suggested I go on Immunostim, Virenex and transfactor.

    Can you tell me what type of results you have been having?

    Would appreciate any help

  18. laura3510

    laura3510 New Member

    what do you think helped?