NEED Help with Dr's and Virus and Cancer possibilities

Discussion in 'Fibromyalgia Main Forum' started by MKate, Mar 24, 2007.

  1. MKate

    MKate New Member

    Hi all - -

    I've been reading all the bulletins - especially interested in these super doctors some have who are so helpful and willing to test, and try AV's etc.

    I'm losing the battle. Losing time, and don't have the energy to research and educate doctors all at the same time that I'm trying to switch health insurance (before the records show my CFS)!.......

    1) Where do I get the ImmunoScience Test panel? If I have an address, perhaps I can bring that in to my new doctor.

    2) Where do I get the RNaseL test? Same -- bring address to my doctor

    3) I may have breast cancer. How do I effectively fight CFS and Cancer at the same time? I don't think that my body will handle chemo or radiation - I need to be rid of the viruses and support the body to rid the cells of all kinds of toxins (from virus and from regular sluggishness of the lymph nodes, etc)

    Please help! I'm drowning. Single, trying to "work" but that's nearly non-existant...within a week If I have cancer, I need to request full disability from my company and get help with the Cancer (they'll beleive that) --- then tell my new doc about virus tests (let him figure out the CFS).....otherwise I'll never get the new insurance.

    Yikes -- this is so tiring. I'm thinking that I don't have the time, money, strength to fight this.

    Help with Cancer/CFS questions and places where I can get the tests. Doctors here are not exposed to all of the latest. I don't even know If my requests will be recieved positively, but I'm hoping so. I chose this new physician because I "heard" he does acknowledge CFS. I don't know how up to date or progressive he is though.

    Mkate
  2. pam_d

    pam_d New Member

    I'm so sorry you're going through all of this at once! I know the devastation of a cancer diagnosis, but don't automatically assume that you won't be able to handle treatment. Sometimes it is amazing how strong we really are when we need to be!

    I was able to get through all of my cancer treatment easier than I thought I would. I had been doing pretty well in the last few years (having FM) but fully expected a major flare to occur when I underwent cancer treatment. Didn't happen. Also, as an FM patient, I had always had strong negative reactions or unsettling side effects to many drugs, so I was always hesitant to try anything new.

    During my months of chemotherapy, I also had to take a whole host of some of the strongest drugs there are, including antibiotics, steroids, anti-nausea meds, PLUS some of the strongest chemo there is. Didn't have the option to say, gee what if I don't like the side effects?? But I'm happy to report, I had amazingly few side effects from these powerful drugs, which was a new experience for me.

    I'm also pleased to report that next week, I'll be one full year in remission from Acute Myloid Leukemia. And doing well FM-wise, too. As I said, sometimes we have strength and stamina we don't think is there until we really need it.

    I know you feel overwhelmed right now (believe me I know about the $$ issues as well; I was out of work for months and hospitalized for much of my tx, paying health premiums out-of-pocket), but we'll all be here for you and praying and pulling for you!! Try to stay positive, go into "Fightin' mode" and kick cancer's butt---if you do have it!!

    (((Supportive Hugs)))
    Pam


    [This Message was Edited on 03/24/2007]
  3. mixed blessing, first off, I'm hoping to god you do not have cancer, in the first place...

    BUT, should you turn out to have it, 1 I hope it is very early stage, and not such aggressive treatment, 2, I wanted to point out, that, chemo, as crazy as it sounds, IS used, to treat progressive MS, not a first choice, by any means, and does cause problems, for some....for others, their overall health improves some- the idea behind it being, that the chemo stops the brain/body from attacking itself...I never have fully understood, how suppressing* an already compromised immune system works, except that, like MS, some of our illnesses, (if not all) causes our bodies to attack good, healthy tissues/organs..

    So, here's hoping you do not even have b. cancer, but, if u do, may it be early, & mild...and should you need chemo/radiation, hopefully your body could actually STOP attacking itself for a bit, and HELP you, rather than already pound a worn out body/immune/adrenal system..

    Some here have said they felt better on steroids...not me, i was on them pretty regularly at 12 day tapers, high dose oral, as well as a 30 day stent (LAST ONE!), and a few 6 day in the beginning... I was LUCKY, if I got 1-2 functional days on them, sometimes* earlier on, I got more energy days, but, it never failed at about the halfway mark, somewhere between days 5-7 out of 12, I already would start to crash, and I hurt like only steroids can make your bones, glands, skin, muscles hurt...the skin/muscles burned...glands swelled quite a bit (sore throat all the way up into my ears, in the past several yrs, now I get this issue quite frequently..)

    Just wishing you the very best, best luck, outcome, doctors, etc...and wanted to give you a different view, possibly* on treatment. Some can do chemo & no radiation...I think that may be the diff between MS treatment, & some cancer patients..and maybe why they don't react as badly, I don't know..like every single thing in life, every* body reacts differently, same dose, type, etc of med, sometimes.

    I don't know, I'm sorry, I'm rambling..

    Just wishing you better days, with clearer outlooks/outcomes.

    With love, & prayers,

    Laura
  4. Pianowoman

    Pianowoman New Member

    Hi, I just wanted to send some good thoughts to you. You have a lot on your plate right now. Perhaps taking one day at a time is best for now. If you do have cancer, deal with that first; if not,(and we all hope not!), then start taking more action on the CFS front.

    For both illnesses, you need to eat well and try to improve your immune system. One thing I remember my CFS Doctor saying is that her patients who have needed chemo have done better if they get IV Glutathione.

    Good luck and keep us posted.

    Kathy
  5. MKate

    MKate New Member

    Hi Pam_d, Kelly C, Laura, and Pianowoman --

    thank you all for your kind words. It helps soooo much! I appreciate the address for the Immunosciences, and the suggestion for Glutathione with Chemo....and it does help to know that some people do ok with Radiation even when immunosuppressed!

    Questions: I am so frustrated because unfortunately I'm doing ALL I know to do for CFS -- without the support of any physician (that's a story in and of itself)

    Feel like my body is betraying me. I'm now upping my Vit C to 25-30,000 mg /day (something I read today) and increasing my Echinacia.

    1) I need to find Virustop. Where do I find it?

    2) How do you get Glutathione Intraveneously?

    3) CFS management:
    I take over $250/month of vitamins,
    I juice,
    I am cleansing my body of toxins, and
    I had amalgums removed.
    I rest alot -- no social life.
    I get regular massages for lymph movement,
    use CHI machine to increase oxygen to cells,etc.

    Additionally, I just started taking the Heart Failure Vitamins 4 weeks ago - felt great for 3 weeks, then began to crash. Did they kick in the cells to grow cancer cells lurking? (Methionine, L Carnitine, more CoQ10, and D-Ribose)... scary -- cause I don't know.

    I really don't know more I can do for the CFS without a good physician to help with intravenous C and other immune supports!

    What more can I do on my own?
    What more can medical do for me?

    3) If I don't get diagnosed with Cancer soon, then I'll have no insurance and cannot pay for the treatments anyway.....so -- I need to get diagnosed, but not before my new insurance kicks in....If I wait another 7 days will that be bad?

    I feel helpless, no diagnostics to really help - and I need to bridge the gap of getting the physician to recognize my high white blood cell count is something -- without telling him 15 years of "suspected" CFS -- cause then my insurance won't pay anything.

    I have no income right now. Self-employed -- completing shut down my sales to research and recoup the last 3-5 months.....I don't have much energy left like I used to.

    I can't seem to muster strength and my body is not getting better.It's fighting viruses and I'm too tired. I could usually rally before. ...HOW can this happen to us?

    I think having no advocate and no physician to work with these 15 years has really taken its toll. I'm not young anymore, either, and afraid of the antiviral stuff some of you all are doing. - even if my new physician would do it ----which I'm not sure he and she know about.

    I've been living in secrecy -- and tired of hiding.
    Mkate (Melissa)
  6. deliarose

    deliarose New Member

    Sorry to hear of your situation. Hoping you don't get a cancer diagnosis.

    You asked about glutathione IVs. Well, some alternative docs offer them.

    I found one by calling the Wellness pharmacy in Birmingham, AL, and asking for a list of docs who used their products.

    Wellness sells glutathione in all shapes and forms. Many docs get their supplies there.

    I'm going to throw one more thing out there..maybe it's just something to think about now since you have so much on yr plate.

    But you might want to check out the threads about methylation and glutathione. If you're interested in improving yr immune system the natural way.. this might be one way to go.

    Sending u good thoughts.
    Delia

    Good luck
    Delia
  7. deliarose

    deliarose New Member

    I see you were a pretty serious athlete when you got sick.

    You may be aware of this.. but athletes sometimes have low glutathione because they exercise so much, and you need glutathione to suppress viruses...

    for what it's worth....
  8. MKate

    MKate New Member

    Thank you both for the additional info. I'll check into it!

    Much lov e-

    MKate
  9. Forebearance

    Forebearance Member

    Hi, Mkate,

    My heart goes out to you!

    You can get Virastop from the website of the company who makes it, I think. Or from online supplement places. I got mine at Whole Foods and a local health food store. The company who makes it is called Enzymedica.

    I have a gut feeling that Virastop may be helpful for cancer. It's just a feeling. I can't remember if I read that somewhere.

    I read a really helpful book called "What Your Doctor May Not Tell You About Breast Cancer' by John R. Lee, MD. He talks about using natural progesterone to treat breast cancer. That may be something that would help with your CFS anyway.

    Love,
    Forebearance
  10. MKate

    MKate New Member

    HI Everyone -

    thank you sooo much for the help with viral meds and emotional support. The second mamogram came back ok -- but I have sure learned alot about CFS and viral and cancer.

    So this has been a great head's up. I know I need to be even more diligent to strengthen my immune system.

    I'll look for the virastop and am starting to take NT Factor next week. (just getting over cold and allergies to the spring dust clouds)....

    Love you all - thank you.

    MKate
  11. pam_d

    pam_d New Member

    Glad to hear your mammogram came out okay! You must be very relieved. I'm always glad to hear good news like this!

    Hugs,
    Pam