New to Board...seeking help for cfs

Discussion in 'General Health & Wellness' started by natyrone, Apr 2, 2003.

  1. natyrone

    natyrone New Member

    I'm new to the message board, so I'll quickly describe myself. I'm a 22 year old male in Indiana, currently trying to get through college. However, I have CFS, so as you can imagine, it's been extremely difficult. I've had CFS for over 10 years, and it has gotten progressively worse since its onset, until it reached a plateau the last 2 years.

    I'm basically asking for any information that you think would help me to get better. I have done a lot of research and have already been trying many things (increased salt, decreased caffeine and sugar, etc.). As many of you already know, those can only take a person so far.

    My condition has been causing me major problems in every aspect of my life lately, so I have decided to take the next school year off in search of help. However, to date, I have been unable to find any CFS specialists in Indiana, or even surrounding states. As it stands right now, I will most likely visit Dr. Lapp in North Carolina. I'm excited to see what he can do for my health.

    So, before turning this post into a novel, I will end it leaving you with 2 questions that I am seeking answers for:

    1) Do you know of any CFS doctors in Indiana that you know to be good and trustworthy?

    2) From everything I've read (including posts on the message board) Dr. Lapp appears to be an excellent doctor. I guess I am just wanting to get more reassurance before I invest that kind of time, money, and energy. So, do you think he is worth going to? Also, any tips on if the tilt test and bike test are both necessary, and any questions I should ask him??

    Any help would be greatly appreciated. If nothing else, if you've read this far, thanks for taking the time to read my post.

  2. polarbear53

    polarbear53 New Member

    I don't know anything about Indiana drs. but I do have something that helps me. I have a severe case of CFIDS since 1986 at age 36. I am 53 now and a grandmother of one. My last of three children is a freshman in college this year. I don't know how she does it and she is well. It is amazing you have gotten through the years you have in college so far. I worry about you stopping before you are done. I was thinking maybe adjustments with less classes. My daughter takes about 4 a semester as she does work/study too. Pacing your classes and a compatible roommate if in dorm. Rest is best. Stopping for a year might be the end of college and I wonder if it would be that helpful anyway. Depends on how much worse you are?? you are the judge there. Anyway, sorry if too personal there. But the product I have gotten alot of help from is called Immunocal (from Canada). It is costly at about $125. for a month supply. Recommended by Dr. Paul Chenney CFS doctor. It helps the cells and I do not get sick all the time with flu etc. Huge help with muscle and lymph pain. I can not take meds for pain so this is a big help to me. It does not give me energy or help the fatigue much on me but others report better results with that. I am a severe case. I do function better though. I don't work though. Maybe the best book I have on CFS is Dr. David Bells book The Doctor's Guide to Chronic Fatigue Syndrome (Understanding, treating and living with CFIDS)1995 copyright endorsed by CFIDS assoc. of america. Still great information and more then most drs. know about all this. If you want more info on Immunocal contact me via e-mail at Don't feel bad if you decide not to stay in college right now if that is what you need to do. But think long and hard about how hard it would be to stop now and start again later. Less classes might be better and other life adjustments maybe. Hope you find a doctor who will listen. I am still searching myself.
    I notice last night that they have a doctor list on this message board site. Maybe check that out??? Oh, maybe a less toxic envionment (like changing dorms or living home) if that is a factor. Get someone to pump you gas for you once in a while to avoid that. Fill it up then. Lots of things can help if you trouble shoot some. The book should help if you don't have it already.
  3. polarbear53

    polarbear53 New Member

    I don't want others to think I sell Immuocal. I do not. I only buy it for me. Not interested in selling it. Just letting you know what helps me mostly. bye again.
  4. danigirlie

    danigirlie New Member

    I read your posting and the others and there are MDs listed on this site, but if all hope is lost and you are willing to travel to NC, I might want to also recommend my MD who is a specialist in RI: Dr. Wendy Clough. she is great (albeit busy) and top in her field. I know that she attends several conferences and is always up on the newest developments with CFS. I have not seen her in a couple of months, because I have felt better, but if you can get in to see her, i highly reccomend it.
  5. natyrone

    natyrone New Member

    Thank you...I have actually already made an appt. with Dr. Lapp and will be seeing him in a couple weeks. If for some reason he can't help me, I'll definitely keep your doctor's name in mind. You said she helped you and that you're doing better...if you don't mind I was wondering what treatments have helped you. Thanks again.

  6. dolfin513

    dolfin513 New Member

    It has been my expereicne with CFIDS, that there was little Western Medicine could do to help except to treat symptoms which could cause other problems. The type of things that worked for me was a change in diet- which helped the digestive problems, yoga and energy work- which helped the energy issues, rest- which helped the brain fog and exhaustion. It was important to be aware of my body and check in with it. Monitoring my energy level before it was too late has been critical. I was diagnosed in 1997 and have had my ups and downs but remianed employed full time through-out the illness. Body work from different disicplines have also been helpful, some not so- it varies from person to person. I have found several things helpful depending on symptoms. I take NADH (5 mg) once a day in the AM, use monolaurin (anti- viral) when I am relapsing, currently, my adrenalins are blown out- so I am taking Drenamin 3 times a day with a B12 shot monthly. I think a nutrionalist was extremely helpful and have done a detox around food, limited my chemical exposure and stay away from toxic people. I see a chriopratcor that specializes in Kinesology (muscle testing) and that supports my immune system. I considered seeing that Dr in North Carolina, early on, but the trip (the exhaustion factor), money and testing just did not resonate with how I decided to treat this illness. I feel that was a good decision for me. The diet change was critical to my wellness. The less chemcials in my body the better my body feels and the stronger it seems to get. This is my personal expereince and does not reflect other peoeples expereince. How you decide to use your energy and money is soley up to you and I wish you the best with that.