Mayo Clinic did nothing, so I headed to a CFS specialist.

Discussion in 'Fibromyalgia Main Forum' started by Trevor1, Dec 26, 2005.

  1. Trevor1

    Trevor1 New Member

    Hello all,

    Its been a while since ive posted, my lifes been a little chaotic lately. Finished my first semester of my freshman year in college at Arizona state university. It was a very tough year with the symptoms, but I managed to get by.

    Anyway, I am coming on 7 months now with my symptoms. That started in june, and have yet to leave me alone. My main symptoms are still the fatigue, the horrible brain fog and "detatched" feeling. Some of you may have read my posts and know my story, but I had'nt been diagnosed for months, so I headed to the Mayo Clinic in hopes of finding an answer. However, my doctor their just put me on Paxil and set me on my way. Of course that did nothing for me, I took the paxil for a little over a month. And im currently slowly getting off of it.

    So me and my mom decided to give up on the Mayo Clinic, and were reffered to a CFS specialist by the name of Scott Rigden. He is located in Tempe Arizona, if anyone has been to him hes a nice, understanding doctor. My appointment with him was last week on Weds. I lugged in my novel of blood work, and sat and explained my army of symptoms to him. It was nice to have a doctor who understood the fatigue and brain fog and how overpowering they are to our bodies. I explained how bad the post-exertional malaise was and how bad my brain fog was. And he diagnosed me as having CFS. However, he noticed on my bloodwork the positive Epstein Barr and the positive Streptolysin, which is strep-throat.

    So, instead of confirming my diagnosis of CFS, he has a few more blood tests ordered. This is what he ordered:

    Re-Do of the Epstein Barr Panel.
    ANA which is to make sure I don't have an autoimmune disease.
    Streptolysin again, to make sure strep isn't still present. He also did a throat swab to see if the strep was in my throat, it wasn't.
    Free T3, to further check thyroid function.

    I am still awaiting the results of my bloodwork, I'll be seeing him again in a few weeks, so I will post results once I have them.

    So, basically we are going on a diagnosis of CFS. Ironically, it felt good to be finally diagnosed. Which im sure most of you would agree after having symptoms for so long and no name for them. Chances are my blood work will all come back negative, and ill be left with CFS.

    So he takes out a piece of paper and writes up a treatment plan. And what does the treatment plan consist of? The only treatment for CFS of course! Supplements! :) It felt good to finally get something for energy though. Also for the fog, and other symptoms. Ive only been taking the supplements since last weds, and have yet to notice any change but he said they usually take up to a month to notice a significant change. Along with the supplements, im now receiving B-12 injections, 5,000mcg's twice a week. I will also list the supplements for you guys.

    Every morning I drink a shake consisting of:

    - 2 scroops of Ultra Inflamax powder, which is a multivitamin powder which aims to help inflammed joints and muscles.

    - 1 scoop of multigenex multivitamin powder, which is basically like a daily multivitamin in powder form.

    - 1 tsp of Zinc drink, which is liquid Zinc to help my immune system and general well being.

    - 2 tsp of Flax Oil to aid in brain function.

    - 1 tsp of Ultra Potent vitamin C powder, which is roughly 4500mgs of vitamin C, to help my immune system.

    - To finish it off a few scoops of frozen blueberries which are antioxidants and also help the horrible taste.

    So that is my supplement shake every morning. Next ill lists the pills that im taking. Each of these pills I take twice a day, totalling 6 pills a day:

    - Sterol 117, aids the immune system.
    - Mitochondrial Resuscitate, helps the Mitochondria powerhose of cells to give me energy.
    - Ulta EPA / DHA, which is Fish Oil, Omega Acids. These aid in brain function, help to reduce the Fog.

    Those are the 3 pills im taking twice a day. And to finish off my supplements, I drink Ribo-Zipp once a day with lunch, which is a powder that you mix with water to help with energy, has vitamins and amino acids. Also he prescribed me 2mg Lunesta to help me get to sleep, since sleep has been impossible since my symtpoms. The Lunesta is helping me get to sleep, so I recommend it to those who haven't tried it.

    Soo this is my treatment plan for now to try and live with the CFS. Which is completely controlling my life, I am so restless and irratible, sometimes I just wanna kill people for bumping into me. I try to maintain my feelings though, its a constant challenege though. Mainly because my fog gives me the feeling of not even existing which amazes me day to day :(. I have the occasional thoughts of suicide but I know im not capable of it, and could never hurt that many people or give up so easily.

    Im going to focus on the supplements and pray that they help lift some of the symptoms power off of my shoulders. Anyway, I know its a long post just had to update you all on my current situation. If you do manage to read this far heh, I hope you all had a merry christmas and are taking care of yourselves.

    Take care,
    Trevor
  2. Trevor1

    Trevor1 New Member

    Forgot to mention im leaving to Mexico this morning actually for a family trip, noticing that its 12 am, so I won't be back for a week. I will read any comments and questions when I return and be sure to get back to you all.

    Take care,
    Trevor
  3. alaska3355

    alaska3355 New Member

    The new doc sounds promising...he wanted his own tests done and updated your results. I hope you notice improvements soon.
    Also, have a great trip and stay well in Mexico! Happy New Year!
  4. bpmwriter

    bpmwriter New Member


    the path you're on with this illness is very common among those of us who have been there. first come the strange, inexplicable symptoms that start running interference on your life. there's so many feelings and emotions associated with this stage from disbelief to fear to humiliation even since not everyone in your life believes in your illness. the first doctor visits are usually frustratingly devoid of relief and understanding. then you see a cfs specialist who is able to validate your symptoms and illness (which feels good of course), and you try a more natural approach including supplements and perhaps a change in diet. here is the thing to be careful about at this stage: sometimes those immune-boosting supplements can make you feel even more sick and lead you to believe you're getting worse. you're not! always remember that cfs and fibro are not degenerative diseases. there are bad days, yes, but there will always be good days ahead. it's never all black. try not to think in absolutes or extremes.

    supplements didn't work for me for the reasons described above. the next stage was to put my life on hold for a little while, eliminate all stress and just focus on what my body was telling me. you may need to do this at some point. it's hard to really connect with your body when you're so focused on things like school and work. can you take a semester off? i took 5 years to graduate and it wasn't the worst thing in the world :)

    at some point, i would recommend trying acupuncture. i have mostly moved on from cfs to fibromyalgia with muscle pain dominating instead of the terrible brain fog and fatigue of the past, but i am still a strong advocate for incorporating some of kind of body work that involves a laying on of the hands whether it be massage, chiropractic care or acupuncture. there are a lot of amazing healers in these fields and as you've already learned, pills are not the answer.

    you will improve, trevor, and you will be wiser in the end. more in touch with your body. more compassionate. it's a journey.

    i hope you enjoy yourself in mexico. sometimes a change in scenery can do great things for the soul.

    be well,
    eddie
  5. Jen102

    Jen102 New Member

    I hope you can find the help that you need and are cured! Question about Mayo. You said they did nothing. What did they conclude? Did they provide a diagnosis? Did they try to tell you your illness is psychological? What treatment did they offer? I personally thing Mayo stinks for these illnesses, offering little or nothing--my experience--sorry to those who have benefitted. I am curious to know if they have changed since I was involved with them. Blessings to you. Jen102
  6. Trevor1

    Trevor1 New Member

    Thanks all for your comments, especially you bpmwriter, I appreciate your info. Like you said, im considering taking a semester off school, this coming semester actually which starts in under two weeks. The problem is, I may be taken off my dads insurance if im not an active student :(, so I don't know whats going to happen with that yet. But ill let you know when I find out.

    Mexico was a good time, lots a bad days though...to tired to get out of bed most of the time but I managed. Also had a few beers one night that didn't go over to well also since they enhance the symptoms so bad. So im gonna attempt to put the ultimate ban on alcohol and sugar. Sugar is very tough tho, since suger is in everything tasty heh.

    Well, im gonna go make a supplement shake and take my pills heh, thanks for comments all. Ill get back to you once I know my blood test results.

    Take care,
    Trevor
  7. bioman85

    bioman85 New Member

    hey trev,

    i'm also a male college student who came down with CFS last year. If you ever wanna chat, let me know and we can exchange e-mails.

    good luck,
    chris
  8. Sandyz

    Sandyz New Member

    Its good to see you back. I got diagnosed 20 years at Mayo and they weren`t very good then with FM. It doesn`t sound like they`ve improved any since then. I think the best think is to go to a specilist for this like your doing. We waste so much time and money on these other doctors and they don`t help.

    I`m going to a FFC and I am much improved over how I started out. I have energy to do things again. Its feels wonderful to have even a semi-normal life.

    Good luck with everything. Keep up your treatment, it will help.
  9. Mikie

    Mikie Moderator

    I have yet to read of anyone's getting help through the Mayo Clinic.

    So far, the new FFC's seem to be helping. They are very aggressive in testing and treating our illnesses.

    Good luck with this new doc, have a great time in Mexico, and keep us updated.

    Love, Mikie
  10. zerped

    zerped New Member

    Trevor--

    Sounds like you're taking all the right steps and you're determined to "live, not merely survive." I hope you get a pleasant break in Mexico. In which part will you be? I've been to Mazatlan three times since my symptoms began, and I feel SO MUCH better there than I do here in Oregon (especially this time of year). A doctor I know (with FMS) and I have been trying to isolate and identify the factors there which cause my condition to improve so drastically. I know of one or two CFIDS people who have moved full-time to Mexico and Costa Rica and feel almost symptom-free. In Arizona you're already in a nice warm, dry climate. On any bad days you might have, remind yourself; "It could be worse. I could be in cold, rainy Oregon" (!)LOL



  11. bpmwriter

    bpmwriter New Member


    interesting that people would feel better in costa rica. it's a very temperate climate but high humidity. the best places to live are in the southwest US, yes? i hate the humidity in florida. certainly better than cold and rainy but nothing like that southern california dry heat.

    trevor, i'm glad to hear you're considering taking some time off. sorry to hear you have practical considerations like the insurance to worry about, but the stress relief is more valuable to you right now than any medication or doctor.

    eddie
  12. TwinMa

    TwinMa New Member

    Your shake sounds like it has good stuff. It is similar to Stormy's shake. Have you read past posts about her shake? Basically, you could just add an apple to your shake and it would be very similar. The apple would make it taste better, too. I've been drinking it every morning for two months and I'm feeling much better. I have FM, though, not CFS. I also have high EBV titers.

    Do you take any probiotics? They can really get your GI tract into good shape, and better GI health means better health overall. And you don't have to have a terrible GI tract to have probiotics help. It's an easy thing to add, and can be a big payoff.

    Sounds like you are on the right track! Glad you had fun in Mexico. Beers in Mexico, mmmmm!!

    Katy
  13. Mikie

    Mikie Moderator

    We are all different. I live in FL and like the humidity. If I live where it's dry, my asthma kicks up--just the opposite of some.

    So. Cal. is humid if one compares it to places like CO or AZ.

    One person's hell can be another person's paradise.

    Love, Mikie
  14. Trevor1

    Trevor1 New Member

    Hi all,

    My doctors appointment isn't until this coming tuesday but just wanted to tell you. When I called the nurse said my blood work was to "complicated" to explain over the phone haha. That didn't make me feel to great. But I guess my EBV is still out of whack and my ASO titers are up from 331 to 444 which isn't good either.

    Anyway im still taking my supplements and B12 injections. And yet still no big change in symptoms =(. Hopefully Ill start feeling there effects soon. I hope you all are healing and ill get back to you once I speak with my doctor about my complicated blood tests.

    Take care,
    Trevor
  15. 69mach1

    69mach1 New Member

    i am having a brain fog moment right now i forgot what i was going to say..oh yes, i believe you could get medi-caid throught the county you live in up til the age of 21 yeas..i looked on ;your bio and you had nothing about yourself or age....

    just food for thought///you can simply call or go down ther or look it up on the internet...

    we have medi-cal here in california same as medi-cad..

    jdoei