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Overwhelmed

Blog entry posted by dixielab, Jan 6, 2011.

Our son is 25. He has been complaining of many of the CFS symptoms since 2007. He was able to graduate from college in 2008. But his symptoms rapidly worsened and he was forced to come back home to live. We have been to many doctors in town as well as flying to drs. far from home. No one has said he has CFS but based on what we've read about it, we are slowly beginning to accept that that's what he has. It's very difficult for me (his mom) to watch him go through this. Sometimes I feel most anxious about his future. Several medicines have been suggested and I am wondering what our next step should be...
  1. dixielab
    Thank you for all the comments. It's easy to feel alone in dealing with this illness. We live in northern Louisiana so we could easily get to Dr. Sharp in Texas. We will definitely look into that.
    Thanks again, Dixielab
  2. Julia Rachel
    I am so sorry for your sons condition and for your heartache. A mothers love surely plays an enormous role in going to any lengths to get their child treated. My son and I both have this disease. We went to over 99+ doctors in order to get diagnosed and treated and traveled thousands of miles. I advocate a bit of a different methodology than mentioned by folks that wrote before me. I think Time, energy, money and stress can be preserved IF you have a lomg term MD who knows you and is willing to help you by running the appropriate CFS/ME/CFIDS laboratory tests. If you have access to such a compassionate MD and he agrees to run the bloodwork,then you can get treated by an infectious disease doctor who is familiar with treating AIDS and Human T-Cell Lymphoma cases as he/she will understand antiviral and eventually anti-retroviral therapy. Testing is your #1 step. Deciding your medications for treatment is your #2 step. Then when more concrete centers get up and running near you, you can switch over. I've listed all of the tests for CFIDS, Test codes, Laboratory information (Quest and Focus only) and insurance codes for billing at VLG on VALCYTE BLOG in casen you wish to check this out and go this direction. Best wishes, Julia Rachel
  3. Victoria
    Apart from the excellent advice given by others on finding a knowledgable, experienced, educated, caring & compassionate doctor, I would be reading & researching as much as possible to try & understand this disease. Even anecdotal stories are helpful.

    Informed is forearmed.

    Each person is unique in their type & degree of symptoms & the sooner you (as a loving & caring Mom) get some sort of understanding of the complexity of this disease, the better you will be able to support your son.

    And Tania's advice on selecting just one treatment, drug or supplement at a time is excellent. It's hard to work out what's having a positive effect if you're taking a cocktail of drugs or supplements.
  4. Kelvin Lord
    I really feel your pain and pathos here, dixielab...the vicarious ache of seeing a loved one like your son suffer might be harder than having the disease in some cases. For that reason, I will spare my usual padding and cut right to the chase and give you my opinion.

    I agree with MedFeb's suggestion with regard to seeking a qualified physician. Too many of us wasted away our youth with year after year of half-baked, or half-informed doctors, resulting not only in wasted time but more serious damage to our systems. When I finally got to Dr. Lapp it not only was a breath of fresh air to hear diagnosis and treatment recommendations that were well-researched and based on 20 years of experience, it also was clear to me that he actually cared. This would be true of Dr. Peterson in Reno, Bateman in Utah, and Klimas in Florida as well. Additionally, I would recommend that you not pussyfoot around with passive approaches. This is an insidious disease that attacks and affects almost all major areas of the body without mercy, so vitamins and happy thoughts just don't cut it. I eventually chose the Ampligen route and was fortunate to be able to get it, and it's worked for me. I know others who are on multiple antibiotic cocktails, and Vistide I.V. My point is simply this...look what lengths the Whittemore's have gone to in an attempt to get their daughter well, and then apply that matrix to your approach. I wish I had seen Dr. Lapp a lot sooner. If it means you fly to Charlotte or Reno every month...do it! Your son's future is too precious to NOT have the best Doctors treating him. May God guide and bless you in this decision.
    "The first wealth is health." Ralph Waldo Emerson
  5. taniaaust1
    I forgot to add... I personally suggest you dont try "several" medicines at once, but rather trial one thing at a time or otherwise it can be hard to know what is doing what and he may end up getting reactions but not know which from or end up on meds which arent doing a thing for him. (that is unless of cause if they are meds which are meant to be taken and work together).
  6. taniaaust1
    hi there :)

    I really feel for your son. I was about 26 yrs myself when I got CFS/ME.

    I agree with what the others here have said, make sure that whatever recommendations are made for your son, are made by CFS/ME experts. Ive known too many to be harmed via poor advice. What is good for one, also may not be good for another so care always needs to be taken.

    You can also learn a lot and gain a lot of ideas to help your son by reading the posts of others who have the same kind of CFS as your son and learning about the things which have possibly helped them. Its all trial and error in this illness, so go into any experimental treatments knowing that so your hopes wont be shattered when something dont help and keep an open mind.

    Just dont give up, if something dont work, there is always something else which can be tried... even if improvement is only 5% with trialing something, each improvement if it happens is a step in the right direction. (the biggest thing is finding good doctors and ones willing to support). Aim for improvements rather then cures!
  7. medfeb
    Dixielab

    I am sorry to hear about your son. My son is 23 and had a sudden onset of CFS in 2010. He went to a number of doctors in connecticut, New York and Washington but just got bounced around, run through endless tests, and given bad recommendations ('go get a gym membership and start exercising").

    From that experience, I would definitely agree with the recommendations here to go to a CFS qualified doctor. My son finally went to Dr Lapp in North Carolina and finally felt like he was with a doc who understands the disease, knows how to assess it and is able to recommend a plan for him (in his case, part supplements, part heart rate monitor to guide exercise, etc). He is just getting going with it so its a little too early to say how it will work out but the positive mental impact on him was significant.

    I feel the same as you - heartsick and anxious about my son's future, unsure of what to do to help him. What's really helped me and also help him was to start to educate myself on the disease, the treatment approaches and the state of research being done today. Sounds like you have been doing that also. Phoenix Rising has been great for that. I've also found this Canadian site very useful - http://www.mefmaction.net/Home/tabid/36/Default.aspx - especially under the physician's section which includes the Canadian Concensus document

    My thoughts are with you.
  8. floydguy
    My biggest suggestion is to see an expert such as Dr. Klimas in Miami or some of the other doctors already mentioned. The average and even above average doctor or medical facility do not deal very well with CFS and related problems. Klimas and others will run the necessary tests to determine if CFS is the problem. You will also get most tests at once rather than getting them piecemeal over many years. Best of luck to you and your son.
  9. 3CFIDS@ourhouse
    Dixielab, I'm sorry to hear of your son's illness. It is so hard to see our children suffer. Watching my daughter, now almost 20, deal with chronic illness has been harder than having CFS myself. I understand your fears for the future and the urgency in getting the best care now. As the others mentioned, it would help to know where you are so recommendations could be made. I have no experience with Dr. Sharp in Texas, but I understand his wife and child have CFS and he is compassionate and knowledgeable. Just having your support and advocacy for him must mean so much to your son. Please keep everyone posted and don't hesitate to ask questions here.
  10. 3CFIDS@ourhouse
    Dixielab, I'm sorry to hear of your son's illness. It is so hard to see our children suffer. Watching my daughter, now almost 20, deal with chronic illness has been harder than having CFS myself. I understand your fears for the future and the urgency in getting the best care now. As the others mentioned, it would help to know where you are so recommendations could be made. I have no experience with Dr. Sharp in Texas, but I understand his wife and child have CFS and he is compassionate and knowledgeable. Just having your support and advocacy for him must mean so much to your son. Please keep everyone posted and don't hesitate to ask questions here.