How I got to be 75% recovered, positive news from a long absent member

Discussion in 'Fibromyalgia Main Forum' started by frankie78, Oct 17, 2008.

  1. frankie78

    frankie78 New Member

    Hi everyone.
    I have been gone from this board for about a year, but in that time I have recovered significantly, and I wanted to share my positive news with you all! When I was at my sickest I remember that the posts where people came back with updates where always so inspiring, and I hope to contribute back in the same way now.

    I have been very sick for about 10 years. You can read a bit about me at my worst in my profile if you care to. About a year and a half ago, I was basically bed bound, my husband did everything around the house and even helped me bathe because I lacked the strength.

    I saw Dr. Enlander in NY city and he was very thorough and we tried Valcyte, but ultimately that did not work for me. The Hepapressin shots he prescribed did help with energy though.

    Last summer (a year ago +) three major things changed. And though I don't know which exactly contributed to what, I am going to list them all.

    First, I was diagnosed with severe, severe POTS. I took medication for it for a bit, though that wasn't a solution for me. What helped the most was an increased intake in salt (1 tsp. in the AM and PM) and the strongest compression stockings available. This didn't help overnight, but eventually, because of the salt and the compression stockings I was able to sit up, to go for short walks, then longer walks, to clean a bit, to make dinner, and it just got better and better. I still do these things everyday. If I am upright, I have the stockings on. They are a pain, but soooo worth it.

    I also got tested for adrenal insufficiency with Dr. Andrew Neville of the Clymer Health Institute. It is very affordable (as these things go) and you can do the testing in your town and do a consultation over the phone. You don't have to travel to him. This was a big deal, since years before I had traveled very far to see Dr. Teitelbaum and ultimately did not improve at all from him.

    Dr. Neville put me on Mil Adregen for adrenal insufficiency, and also Seriphos for help sleeping. These helped tremendously!! I had been on klonipin for years for sleep, then ambien and still could never fall asleep. I now take no sleep aids save the Seriphos, and I fall asleep very easily by 10pm and wake up at a normal hour (between 8 and 9). I know 10 or 11 hours of sleep is a lot for some people, but at my worst I was sleeping 14 hours a day and napping, so this is a great improvement.

    Lastly, and I feel this one might be a bit controversial, but I want to include it because it was part of my regimen. I bought Ashok Gupta's Amygdala Retraining Technique DVDs. I heard about from I believe Swedeboy on this site. His system is based on retraining the stress centers of the brain, and calming down the nervous system. His DVDs come with a guarantee that you will see results within 6 months. I did find this to be the case, though for me it took a bit longer, like about 9 months to see the full effects of the program.

    Besides these things I continued with my diet of low sugar, no white flour, and lots of fruits and vegetables.

    Though it was a long road, I now consider myself about 75% recovered. I can drive, do errands, clean the house, exercise (which for me is going for walks -more than this I really can't tolerate). I have gone back to work tutoring part time, and I also have opened my own store on Etsy where I sell handmade kids clothing and quilts. This has been perfect for me, for when I was still not that great I could sew for an hour and then rest for an hour. Now I sew and work on projects about 6 or 7 hours a day. I also babysit my friends children one day a week. I couldn't do this everyday, as they have much more energy than me, but One day with a day to recover is fine.

    I will not be back on here much, but I will be back in the next few days to read any responses and answer any questions you might have. Though I don't come back often, I have to say that this site gave me all the information I needed to get better. I learned about the DVDs, about the Clymer Clinic, and about POTS on this site. So thank you from the bottom of my heart to everyone on here I have chatted with over the years.

    Good luck to you all! And take care of yourselves.
    [This Message was Edited on 10/17/2008]
  2. 3gs

    3gs New Member

    hi Frankie was so glad to read your post. It nice to hear someone doing well.

    I have a few questions. What is pots? ive seen this before.

    also something curious happened to me last nite.I made split pea soup and put in to many ham hocks. Way salty!

    ate it anyway noticed last nite I slept well and feel better. i have cfs fibro myofascial pain severe ebv lyme.

    you taked about taking salt. dont know if theres anything to this but am curious.

    thanks and keep on trucking!
  3. jole

    jole Member

    So happy to hear you've found your answer! And that you've come back to post - yes, it might help someone else. The part that I found most interesting is the part about the salt...also the compression stockings. My legs are always sooo cold, and I've wondered if my circulation is bad. Perhaps the stockings would help me in more ways than one.

    Also, there is a post here on brown seaweed by slayadragon that is very interesting, which has some comments about the lack of iodine in our diets and the benefits of taking iodine. So maybe the salt fits into that category.

    At any rate, I am happy for you, and hope you continue to improve. Have a happy life! ****Jole****
  4. cordy250

    cordy250 Member

    that Frankie is referring to is Postural orthostatic tachycardia syndrome
  5. suz9601

    suz9601 Member

    Thanks frankie for coming back and giving us hope. I too have Pots and cfs among many other things. I have been hearing good things about the amygdala retraining and will try it soon. I like you have had an enourmous amt of stress in childhood and early adult life that I think set me up for this illness. I am so happy you are better. I am about to turn 31 and like you want to be well and have a baby someday and my clock is ticking like crazy. How much do you think the amygdala retraining helped you? Thanks again for taking the time to come back.
    Take care,suz
  6. bretzie

    bretzie Member

    Hi Frankie,

    I don't know if you remember me, Denise, but I am so glad to hear how well you are doing. You certainly did a lot of work and were brave to try different things. I am sure you are so so happy to be functioning and "upright" -- great that this is moving along for you and that you are also doing your own business.

    I'm still seeing Dr. Enlander, but have already emailed Dr. Neville as I'm sure I also have adrenal insufficiency. I jsut started the Hepa injections a few weeks ago - so far no improvement in diminished weakness, but it's probably too soon. I just finished a great on line course called Coping with CFS and it stresses pacing, rest and reducing stress.

    I have to thank you for coming back on and posting what has helped you so much. Too few people do that and it is so very important.

    I remember mentioning support hose to you a long time ago, but you certainly needed the whole salt/support hose treatment. I am so very glad it worked as the POTS sounded just awful. I had low blood pressure from a med years ago and was told to drink lots of water (to increase blood volume) and wear support hose -- it did help with the dizziness I had from the medication.

    One question: Do you still think you have CFS? Or do you think it was primarily adrenal issues along with POTS?

    And -- I believe I saw you a long time ago at Dr. Enlander's -- it was my first visit and I noticed a young woman who was lying on the couch and sitting on the floor. Later I wondered if that might have been you. She was tall and slim in jeans and had long dark hair.

    Take good care of yourself and keep on improving and growing your biz.


  7. Forebearance

    Forebearance Member

    Congratulations, Frankie!!!!

  8. pw7575

    pw7575 New Member

    Frankie I am so happy that you are doing better. I also really appreciate you coming back here to let us know of your progress. It really is important for us to see that people are improving. It gives us hope that we all can improve and that is SO important. I hope you continue to do well.

    3gs - I know of other people who have improved from increasing their salt intake. It can be very helpful for some of us here...especially ones with Orthostatic Intolerance. I have increased my salt a little bit but need to do more. I can feel that it helps me a bit so I plan to increase it more. BUT DO NOT use regular table salt. Use only natural salts like Celtic Sea Salt or Himalayan Salt etc. Natural salts are different from regular salt and have a different effect on the body.

    Anyhow...I hope you continue to do well Frankie. That is such great news!

    Take Care,
    Pam :)
  9. frankie78

    frankie78 New Member

    POTS is Postural Orthostatic Tachycardia Syndrome, also know as NMH, I forget what this stands for, maybe someone can chime in? It means that your autonomic nervous system isn't any good at keeping basic things in balance in your body - things like temperature, herat rate, and blood pressure can varyy widely and cause lots of problems. Salt helps to raise and stabelize blood pressure (when I'm not on salt mine is about 85/50 - keeps me super dizzy. Its impostant to know what your blood pressure is before you start salt - it has to be low for salt to help and not hurt you. I have always likes salty foods and i think this might be why. It's worth a try for you if you thnk it ight help!
  10. frankie78

    frankie78 New Member

    I will definitely read the post about he seaweed. Thanks for telling me about it. I have tested very low for iodine in the past so I wouldn't be surprised if this is related. :)
  11. frankie78

    frankie78 New Member

    I think you and I are in the same boat. My husband and I started trying to conceive about 6 months ago. No luck yet. I wonder if we're going to have a difficult time because of my adrenal insufficiency. If you have POTS are you on any treatment for it? I think that was so much of my problem.

    I think the amygdala training is really, really worth tyring, especially if like me you have had a lot of stress in your life that may have helped trigger your illness. I felt silly doing it sometimes, and I felt like it wasn't helping in the beginning, but if you decide to try it give it a good nine months, and don't listen to the patients that say they were totally cured really fast. It takes a long time, even after you start to feel better, to get your body used to doing things again. But the training helped immensely with stress issues for me. I say go for it! And good luck!
  12. frankie78

    frankie78 New Member

    Of COURSE I remember you! I have thought about you often in the past year and hoped you were doing okay.
    Definitely consult with Dr. Neville. Those supplements helped so much for me -especially with my sleep.

    I'm sure it was me you saw at Dr. Enlanders. I am tall (6 feet) and slim and I have long dark hair, and when I was so sick I couldn't sit up,so I always laid down, on the couch if possible or if not, on the floor. I got a lot of strange looks but I just couldn't sit up for that long.

    The Hepapressin really helped me, but I have to say I didn't notice a difference really until I have already started to feel better. It didn't really relieve any symptoms I had, it just kind of increased my energy level.

    As far as what me real diagnosis should be, I can't really say. I was diagnosed with CFIDS by many many doctors, but the specialist I saw that figured out I had POTS said he thought the CFS was secondary to the POTS. So I'm not sure. But I certainly had symptoms that the POTS couldn't explain - all the sleep issues, and cognitive and memory dysfunction. Those are much better now.

    I hope you are getting better too!
    All the best,
    [This Message was Edited on 10/17/2008]
  13. suz9601

    suz9601 Member

    It might take some time for all ofyour hormones to come into balance again. I know htat the adrenal problems can alter your female hormones too. Give it a little time and I;m sure you will become back in balance.

    I take a beta blocker for POTS. I had to. My bp drops and that is difficult at times but the beta blocker was necessarey because my heart rate would go up to 200 bpm when I stood up and sometimes just rolling over in bed or sitting down watching TV. My ANS is so screwed up.

    I had CFS for about 6 years before the POTS and ANS issues so I think that it is part of hte CFS for me or part of the hypothalamus malfunction or amygdala malfunction.

    Anyway, I will keep you in my thoughts and prayers for you to improve to 100% and have a beautiful baby.

    Take care,
  14. somelife

    somelife Member

    So glad to hear that there is hope for the rest of us. We just gotta keep trying.

    May your improved good health continue.

  15. bigmama2

    bigmama2 New Member

    how many mil adregens do you take? did he give you isocort too?

    [This Message was Edited on 10/17/2008]
  16. JenniferAnn539

    JenniferAnn539 New Member


    Thanks for your post and all the good information that you provided to us.

    What doctor diagnosised your POTS, and what test was done to dx it?

  17. frankie78

    frankie78 New Member

    I take 3 Mil Adregen a day, spaced out. I don't take isocort. Did Dr. Neville prescribe that for you? Does it do the same thing?
  18. frankie78

    frankie78 New Member

    My local primary care doctor diagnosed me with POTS, strangely enough. I had read about it on here, and thought, I think I have that. So I made an appt. and she actually listened to me. She referred me to a specialist in Boston, I can't rmember his name, I only saw him the once but I can look it up if you need it, and he did a tilt talble test. They said I passed out quicker than any other person they had ever tested. (At least I'm good at something, right?)
  19. redhummingbird

    redhummingbird New Member

    Thank you for coming back to post. You're right. It does help when people do this.

    I have a couple questions. You mentioned you were on Valcyte but it didn't help. Interestingly enough, I was reading a thread here about valcyte and I saw you post quite often so I wondered what the eventually outcome for you was.

    How long were you on Valcyte? Do you think it had any impact at all? It seems they are discovering that people can notice improvements up on 12 months off the drug.

    I'm trying to make a decision about whether or not to take it.

    Thanks for taking the time to check in and let us know that great improvement can happen! I wish you continued improvement to 100%.
  20. bigmama2

    bigmama2 New Member

    congrats again! i am so happy for you!

    dr neville at clymer has helped me more than any other dr i have seen- and i never even met him- did it all over the phone and testing by mail. im glad you got hooked up w him and found out about your adrenal fatigue/insufficiency. i truley think everyone w cfs or fibro should do this testing.

    dr neville had me take 1 miladregen 3 times a day. it helped. then a few months lated we added some Isocort. up to like 6 per day. that helped too. my sleep has improved due to this program. i started all this 2 years ago and it has been slow progress.i could feel it working over the months, like a cumulative improvement. took a long time,but soooo worth it.

    for me adrenal treatment has helped sooo much but it is only one piece of the puzzle. i am alot better than i was before. i was becoming semi bed ridden, and could barely take care of myself. now i am out of bed almost all day, almost everyday. can take care of myself and my home. socializing a lil more. but not able to have a ft job.

    well, i wish you continued progress!!!!!!!!!!!!

    i really should re do the adrenal saliva test now.