Getting worse fast (ME/CFS)

Discussion in 'Fibromyalgia Main Forum' started by Andrew111, Sep 22, 2008.

  1. Andrew111

    Andrew111 Member

    I have ME/CFS since 2005. I had to quit work in 2006. In February 2008 I was diagnosed with prostate cancer. It is low grade and can be watched awhile. Then in April of 2008 I was diagnosed with oral cancer. It is aggressive and I had to get right into treatment. The chemo and radiation were rough, but I started to come back.

    But a month ago I started to get weaker. I have been weaker ever day since. I got so weak I could not take care of myself. I had to hire a caregiver, but I can't afford this for more than a month or two.

    I don't know what is going to happen. I live in Los Angeles and made an appointment with Dr. Joseph Sciabbarrasi MD. He is a holistic doctor who has experience with ME/CFS and cancer. The caretaker is driving me there tomorrow.

    I am trying to keep a positive attitude, but it is not easy. At this rate of decline I fear that in a few weeks I won't be able to get out of bed.

    Anyway, I can't say for sure this is my ME/CFS acting up. Maybe it is something else. I'm running a temp that runs from 99.2 to 99.7. Plus very bad night sweats. But the regular docs find nothing in their tests.

    Don't know what else to say.
  2. spacee

    spacee Member

    I am so very sorry to hear about what you are going through. I am so hoping that the new doc can help.

    Too me...and I am not a medical professional, it sounds like something is out of whack with your immune system. Dr. Paul Cheney has been very interested in how the immune system is suppose to shift back and forth from TH1 to TH2.

    I don' recall which controls which but one fights viruses, bacteria and cancer. Other infections too...fungus.

    Night sweats could be Hogkins Disease (lymphatic form of cancer) but it could be part of the CFS too.

    I will be praying for you and that Dr. S. has wisdom in how to treat you. And that you will improve.

  3. Rafiki

    Rafiki New Member

    Man, you are having a really rough time. I guess I don't have to tell you that, do I.

    Your docs may not know how debilitating an infection is if you have ME. There are some beasties, like mycoplasma genitalium, which most people host without problems but we struggle with. You might ask to be tested for it. There might be other bacteria which are not easy to find but which might be causing you problems.

    I think it would be worthwhile to ask your oncologist if there is any reason that you should not be treated with antibiotics. Your treatment may have weakened your immune system allowing the ME to get a bit of a toehold again.

    Please let us know how you go if you're up to it.

    Sending you mega good vibes,
  4. mbofov

    mbofov Active Member

    You are having a rough time - I'm so sorry. But I'm glad to hear you're going to be seeing a holistic doctor.

    I have CFIDS, my immune system doesn't work right, and when I get sick, I get night sweats - I don't run fevers. When I get better, the night sweats stop.

    So Rafiki may be right - you may be fighting an infection which is wiping you out. It's definitely worth investigating and hopefully your new doctor will look further than the other ones.

    Take care and let us know how you do --

  5. baanders

    baanders New Member

    Blessings to you. Have you looked into the worship board for prayer?

    Don't be afraid. There is a procedure called an intrathecal pain pump. Please look on medicine for more info.

  6. kellyann

    kellyann New Member

    I am very sorry to hear you are feel so bad. I think you need to go see a cancer specialist, not a holistic doctor.
    All a holistic doctor will do is put you on supplements that will cost you a ton of money. It has been my experience that they will not even give you pain medications. Maybe some are different, I don't know.

    Is there any way you can make an appointment to see a cancer specialist? What does your regular MD say about your rapidly worsening condition?

    Andrew I will pray for you sweetheart, I hope you feel better real soon!

    Remember: Jesus loves you!

    Your Friend,
  7. wendysj

    wendysj New Member

    Hi Andrew!

    I just posted to someone else asking about night sweats. I had night sweats and fever for about a year or year and a half. I also had swollen glands and low grade fever during that time. They removed two lymph nodes to check for cancer but there was none. They said it was probably just the CFS. It got better over time. It still happens but not nearly as much.

    I'm sorry you have to deal with so much at once. I've had several surgeries these past three years for different issues other than the CFS/FM. It is hard to keep your spirits up. The only way I could do it was taking it one hour at a time on bad days and then one day at a time on not-so-bad days.

    Good luck.
  8. tansy

    tansy New Member

    Hi andrew

    I am sorry to read you have been through all this recently. Patient with FM often report feeling bad from the chemo but their FM symptoms become less severe, their FM Sx return a while later.

    Patients with ME and CFS occassionally report the same but many feel worse during chemo. A lab in London has found free DNA in ME/CFS patients; the only other patient group who have these results are cancer patients on chemo. So I am not surprised you have taken a downturn.

    My son's stepmother had radiotherapy and chemo and one of the after effects was problems with her thyroid hormones. She was living in Japan at the time and had excellent aftercare including what is often considered to be naturopathic and alternative Tx.

    Pam_d has been through chemo (and a bone marrow transplant recently). I cannot remember everything she did post chemo but I do know she took probiotics.

    The night sweats are a well documented Sx in ME; I had many of these during the early years of my illness but now they only tend to occur during major flare ups/relapses.

    A holistic doctor (MD) with expperience in treating both ME/CFS and cancer sounds a good idea to me; he hopefully has a good understanding of the physiological impact of both ME/CFS and chemo/radiotherapy.

    Good luck. I sincerely hope this downward trend is halted and can be turned around soon.

    tc, Tansy
  9. Bambi

    Bambi New Member

    you are having such a terrible time.I tend to agree that your first step should be to go see your Oncologist if you haven't already. I have next to nothing for Holistic doctors, but it seems to help some..and that is always what counts. I don't believe any of us should knock what others have to do that works for them. I personally am trying to find a Chinese doctor that uses their centuries old methods. It's hard to find, but I've heard if they are authentic and good, they can get excellent results with a lot of things. Good luck and try to keep your spirits up! Sincerely, Bambi
  10. babyk902

    babyk902 New Member

    so sorry to hear that you're feeling so bad! it's definitely been a long and frustrating journey for every single one of us although we all deal with different symptoms. i think going to a holistic doctor that esp is familiar with cfs is definitely the way to go. I've been going to a kinesiologist (holistic doctor as well) who specializes in cfs and he is the ONLY doctor that has somewhat given me my life back, and i hope he can do the same for you.

    he made me realize that it is SO important to be cautious of what you are eating, drinking, and taking in on a regular basis, such as lotions, fragrances, anything with chemicals etc, bc most of us with cfs can't handle these toxins which cause our health to spiral down even worse. typically cancer is caused by toxins, and your body made be having a hard time dealing with all of the toxins in your body. i'm not sure what your diet is like but i feel so much better when i'm eating better food, i try to eat alot of veggies and protein rather than carbs and sugar. this will help protect your immune system anyway.

    please keep us updated on how you're feeling, feel better!!
  11. Catseye

    Catseye Member

    Hi andrew,

    I would check into gut dysbiosis and the resulting digestive problems. That would explain your decline. It's treatable with diet and supplements if you have the right expert.

    I did a test that showed what was happening and what to do about it, you can see what I did at my thread:

    "toxic guts, toxic body, why do a comprehensive stool analysis"

    When the gut flora is out of balance, it affects digestion which can cause multiples nutritional deficiencies and a malfunctioning liver. It's fixable, but it's a pain to change your diet. Maybe your holistic doc can order and interpret it and make the proper recommendations. If he's really good with cfs, he should be familiar with this test and what to do.

    good luck

  12. sascha

    sascha Member

    so sorry- see what holistic doctor has to say. you need to regain strength. maybe doctor can prescribe diet and supplements to get you back on track.

    i'm going the route of having complete digestive analysis done- the stool, urine, saliva, blood tests- based on belief that 70% of our immune system resides in the gut. (i didn't make that up; but on reading about it, i agree that this is the case)

    i have been through anti-viral course of treatment for cfids (tested very high for certain viruses), and am still on them. virus counts have come way down, and i'm feeling better in many ways. still awfully weak and wasted, though. so i'm going for this next step of getting healing diet and supplements prescribed for me based on my testing results.

    if you're interested in exploring this route (read barrowinnovations posts on this web site- she's gotten fantastic help following this route), you can get information online at

    best of luck to you- i hope you find answers and help SOON. Sascha
  13. Andrew111

    Andrew111 Member

    Hi everyone. Thanks for your replies. I wish I had good news, but I'm still going down hill. And now I'm wondering if it would be better to just stay home and rest, instead of wearing myself out going to doctors. Not sure.

    Also, some people here suggested that I see an oncologist. I have an oncologist and following his advice. But I wanted to add a holistic doctor too.
  14. stschn

    stschn New Member

    Please go the rest and meditation route and shop pushing yourself. It is the hardest thing for any of us to do but the pay off is the best for us. Please know that my heart goes out to you and that the people here know at least in part how hard this must be. None of us should have to deal with this DD to say nothing about a another one on top of it all.
  15. Rafiki

    Rafiki New Member

    My comment re oncologist was clearing with her/him any treatment for your CFS such as antibiotics. I know that I can't handle bacteria the way healthy people can.

    Mycoplasma genitalium, for instance, is ubiquitous and it doesn't bother most people but someone with ME/CFS who had also undergone chemo could really struggle with this, or other, bugs.

    A phone call to your oncologist re the possibility of a "stealth infection" might be a good idea.

    I really hope you begin to feel better soon.

  16. Andrew111

    Andrew111 Member

    Since I last posted I developed a sore throat, plus swollen glands in the neck. The sore throat is not like a CFS sore throat. It feels like I caught a bug.

    The oncologist gave me antibiotics for the sore throat. Dr. S doesn't know yet, but I will tell him the next time I see him. He has me intravenous vitamin C and some supplements. The primary supplements are K Pax immune support and d-ribose (for muscles).

    So far I'm just getting worse. But I guess I need to give it more time. I hope this doesn't happen to any of you. It is very scary. Right now I'd love to have my very limited functioning of 2007 back.
  17. meowee

    meowee New Member

    I am so sorry to hear of all your problems. As if CFIDS and FM are not enough, you have more things to worry about. I want you to know I send you all my love and prayers for a quick recovery. We all care about you, my friend.
    God BLess
  18. Andrew111

    Andrew111 Member


    I wanted to get back to let all you people know that my downward decline stopped. Then I got a little better, than a little worse, then better, etc. Overall I'm at a much worse level than a year ago. But at least I'm not just going down hill. And, I feel some hope now.

    The decline stopped during a 10 day period when I was on amoxicillin. Improving my sleep also helped. My sleep improved after I blocked out the windows with foil and started taking time release melatonin before bed.

    Thanks to all of you for your posts.
  19. ladybugmandy

    ladybugmandy Member

    hi andrew. so glad to hear that you have found some relief, albeit a little.

    may i ask..did you get sick after a flu-like illness? have you ever tried antivirals?

  20. Andrew111

    Andrew111 Member

    When I first came down with CFS I could only keep focused for very short periods of time. I felt like having the flu, except much worse. When I tried to walk I felt like I might pass out or fall over. My legs felt heavy and a little odd. Over the next few days I noticed intermittent sore throat, ear aches, and sinus pressure.

    As for anti-virals, I had intravenous vitamin C. This was 20 times over several weeks. I have not tried any of the other anti-virals.

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