Need advice, please - suffering

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by needtobreakfree, Jul 10, 2014.

  1. I need any advice I can get because I'm having a somewhat unusual situation and it's a situation none of my doctors have run in to before and so I'm having trouble finding a solution.

    I've been quite ill with HHV-6 for several months, and mostly bedridden and totally housebound. I have done about three months of Valcyte. I was making such slow progress with two pills, but I couldn't tolerate three pills, so along with my doctor, we decided that I should try to do two Valcyte pills and one other less toxic antiviral.

    Well, I had a severe reaction where I couldn't breathe and felt like my whole torso was inflammed. I was throwing up and it took several days to partially recover. Ever since then, I can't tolerate anything. I can not tolerate Valcyte at all, I can't even take an echinacea pill. Absolutely anything that kills virus makes it so I can barely breathe, and I was in the ER twice in the past week.

    I tried stopping all meds. I was quickly getting worse after just a few days. I was so ill a few months ago I was practically near death, so I am scared to get that sick again. I am still mostly immobile, but I don't feel like I'll die on most days anymore, except now when I take anything that kills virus - olive leaf, echinacea, anything at all, I feel awful. But when I take nothing, I get sicker very quickly with increased weakness, pain, all of my usual HHV-6 symptoms.

    I don't know what to do at all. I can barely breathe right now and the feeling of inflammation throughout my body is really bad. I know the people in the ER can do nothing for me, because I've already been there twice. This seems to be an unusual reaction that the doctors don't know how to deal with.

    Any advice would be much appreciated.
  2. Soul*

    Soul* Active Member

    I can't advise you in this but I just want to wish you all the strenght you need to deal with this.
    It doesn't seem like a situation you should ask online advise for. Isn't there another doctor they could refer you too?
    Maybe ask around on a forum or site for HHV-6. If you google on it it does mention some sites that may be more helpful. Hang in there, try to focus on other things the moments you can and good luck in finding a health professional who may recognize your situation!
  3. ljimbo42

    ljimbo42 Member

    Hi needtobreakfree- It sounds like your body is overwhelmed with toxins from dead micro-organisms, toxins create a lot of inflammation and can make us feel like we are dieing. Supporting your liver's ability to cleanse the toxins from your body should help.

    Maybe you could see if there is any interactions with your medications and dandelion root from your doctor. If there isn't, I would start with a low dose of 100mg every 2-3 days and slowly work up from there until you feel better.

    The advantage of using dandelion root over olive leaf, echinacea, etc. is that dandelion root is not an antiviral, so it won't kill off viruses. It's a very mild blood cleanser and will reduce the level of toxins in your blood without adding more from the viruses. All the best- Jim
    Last edited: Jul 11, 2014
  4. Thank you everyone, and Jim, this is kind of what I was thinking was the cause, but wasn't sure, so I'm glad you have a recommendation. It does seem worth a try if I start extremely slowly with it. I'll see if somebody can pick it up for me and take like a teeny tiny bit to make sure I can tolerate it and see how it goes from there. I really appreciate it!
  5. ljimbo42

    ljimbo42 Member

    needtobreakfree- Best of luck to you! Jim
  6. ljimbo42

    ljimbo42 Member

    Hi jaminhealth- Yes, milk thistle works very differently in my experience. I use to take up to 2,000 mg a day of milk thistle extract standardized to 80% silymarin and felt no relief in symptoms. I use to get flu-like flares that lasted 1-2 weeks, once or twice a month, every month.

    When I started drinking 1-2 cups of strongly brewed tea of burdock root and dandelion root, my flu-like flares stopped after 4-5 days. That was about 2 years ago and I haven't experienced those flares like that since. Dandelion root is found in many liver cleanse formula's, because it works so well with the liver to cleanse it and the blood. All the best-Jim
  7. mbofov

    mbofov Active Member

    needtobreakfree - I am so sorry you are having such a rough time. Jim could be right - your liver may be overloaded. Dandelion is very good for the liver. I also have found milk thistle to be beneficial. I did a major liver cleanse 11 years ago under the supervision of my chiropractor who does muscle testing - the major problem appeared to be chemical solvents from a job I had had when I was 19 (a long time ago). Anyways, my liver has been much better ever since and I take milk thistle (around 400 mg.) a day just as basic liver support. But back when my liver was toxic, I also drank dandelion tea and found it quite helpful too. So I think both milk thistle and dandelion are good liver support.

    I would suggest seeing a chiropractor who does muscle testing. I would have been very sick without mine. My liver was so congested and overloaded and no doctor ever mentioned it might be a problem. They just don't, unless it's starting to fail. My chiro also helped me when my adrenals were very weak, and again no doctor ever did anything for that or even knew there was a problem. So if your liver is overloaded and stressed from toxic overload, a competent chiropractor who does muscle testing should pick it up right away, and be able to help you. A good place to find one is to go to the Standard Process website (they make very good products used by chiros) and they have a search feature for practitioners who use their products. I really think I would have ended up bedbound without my chiropractor.

    One more thing - you might consider attacking the HHV6 from a different angle once your liver is sorted out, by strengthening or modulating your immune system instead of taking antivirals. A product called Moducare helped me a lot, I started getting sick a lot less after taking it and it did not cause a herxheimer reaction. It's an immune modulator, not a booster. Also make sure your vitamin D levels are good - hopefully your doctor's done that already.

    Good luck and take care -

    Mary
  8. Thank you, Mary. That's interesting, I may try the Moducare when I'm a little better again. Also, I go to an acupuncture clinic that is also a chiropractic clinic, so I can ask them about what you mentioned. I have a question for you and also Jim, since you have both tried dandelion root. Does it give you strong detox side effects? I can tell my liver is congested, because I can actually feel my liver sort of, and I'm usually not even aware of it at all. Do you think if your liver is really congested you need to start extremely slow on the dandelion root? I know I'm super sensitive to selenium. I've taken it a couple of times and had a strong detox reaction. I forgot to mention I have a really high viral load of HHV-6. I have not only high titres but a lot of detectable HHV-6 DNA in my blood, so I'm a pretty bad case.

    Thank you again,
    Lisa
  9. hangininthere

    hangininthere Active Member

    I take Charcoal capsules to detox. Instead of adding more supplements, which most I am too sensitive to and they make me sicker and more toxic.

    Charcoal sops up toxins (just like in the ER it's used for drug overdoses). It really perks me up. Fast, like right away same day.

    I take one capsule a day for a few days when sick and having malaise misery from toxin overload. It can be taken every day though.

    Patti
  10. mbofov

    mbofov Active Member

    Hi Lisa - I tolerated the dandelion tea very well - I don't remember a detox reaction from it, although it has been 11 years. But as with everything, I would go slow with it to see how you react.

    The charcoal sounds good too for mopping up toxins.

    One other thing that is very good for the liver which never caused any detox for me is lemon juice. It helps with digestion and also helps cleanse the liver - just add some to water and drink it several times a day. I buy the bottled - I know fresh is better but it's more expensive and also would have to keep going to the store to get more, and the bottled kind works. I think the dandelion tea may work along similar lines -

    I hope your acupuncture/chiropractic clinic can be of help. I've recommended muscle testing to many people. It's helped a couple of my sisters a lot. It really is amazing. I take it for granted now, but remain extremely grateful I stumbled across it 20 years ago.

    Okay - one more thing - after I did that liver cleanse 11 years ago, as well as taking milk thistle regularly, I started taking hydrochloric acid with meals, particularly heavy meals or meals with meat, cheese, eggs, other things that are hard to digest - my digestion is so much improved from back then and my liver is in good shape.

    Mary
  11. ljimbo42

    ljimbo42 Member

    Hi Lisa- Dandelion root is very gentle and dose dependent. So the more you take the stronger the detoxifying action and vise versa, the less you take the less the detoxing action. If you take about 50mg a day you shouldn't notice anything, and would be a good thing to start. : )

    You would probably need to estimate how much of a tablet or capsule is 50 mg. Selenium helps to make glutathione peroxidase in the body which is a powerful antioxidant and also detoxifies toxins in the body. That could be why you had such a strong reaction to it. Once you lower the toxic load in your body it should be easier to treat the HHV-6. All the best - Jim
  12. Awesome, thank you, Jim. I just had somebody get the Dandelion Root for me and I took just a little amount and so far so good. It's only been about an hour, but no bad effects so far.

    And thank you, Patti, I may try charcoal eventually as well. Anything to get this junk out of my system.

    And Mary, I have heard about the lemon juice, I think that's definitely worth trying as well.

    This has all been such a puzzle and a long journey. I think this detoxing thing is a good start, though, so I can start trying to get rid of the HHV6 again soon. Thank you everyone!
  13. mbofov

    mbofov Active Member

    Hi Jam - I don't know what your lab numbers mean, hopefully someone else can help.

    Your friend's protocol does sound a bit rough. I think something like that is mainly for flushing gallstones. My brother did something similar when he had gallstone problems and it helped him a lot. But if someone has large gallstones, then I don't think this is a good thing to do. the large stones can get stuck and cause serious problems.

    And I think people usually know when they have gallstone problems. They'll have pain or their digestion will be screwed up and so on.

    Liver cleanses are different. They are more focused on cleansing the liver of toxins. There's all kinds of different cleanses. The one I did some 11 years ago was specific for chemical solvents. I took products my chiro gave me by Standard Process. My liver was quite toxic at the time. I felt sick, tired, fluish, digestion was way off, had lots of symptoms.

    I think all our livers could use some cleansing from time to time just because our food and water and air have so many toxins. Milk thistle is very good. Lemon juice is good too. And you can look on-line too - Dr. Oz has a 48=hour cleanse involving certain foods etc. Dandelion's good as Jim has said, and he has good results with Burdock root.

    Hope this helps -

    Mary
  14. ljimbo42

    ljimbo42 Member

    Hi Jam- I don't know what liver labs are the most important. I think it depends on what you are looking for. AST and ALT measure the amount of on going cell death in the liver, which everybody has to some degree. Bilirubin measures the amount of dead red blood cells the liver is able to process,etc.

    I agree with Mary about the liver flush, sounds kind of brutal. I think excellent results can be had with on going gentle detoxing with some of the supps mentioned above. Why use a sledge hammer to swat a fly when you can use a fly-swatter. :) Jim
  15. Abdulrahman

    Abdulrahman Member

    Sounds like you have a strong Histamine reaction, its similar to developing a strong allergic reaction. Study your body, do you notice a strange puffiness or swelling? It looks a lot like water retention but its more dangerous.

    Anyway here is the quickest solution that solves the probelm in two days maximum:

    Purchase fresh Ginger Root about 6 pounds. Juice some ginger in a juicing machine util you get a full cup of pure juice. Strain out any solids. Drink half of this on an empty stomach. After 1 hour, drink the remaining half. Next day do the same. Be sure to drink 3 glasses of bottled water about a half hour before drinking the ginger. Also, walk in the house after taking the ginger, about 15 minutes walk. The Ginger is very hot to drink and very strong tasting but this is a tried and proven solution to a Histamine reaction. Better to take some spicy ginger juice then to have Kidney and liver damage......

    Good luck

    Abdulrahman
  16. Mikie

    Mikie Moderator

    I haven't had time to read all the responses but, please, check out the Transfer Factors sold here. AV's are not very effective against HHV-6. If you decide to try the Transfer Factors, start out slowly by opening the capsule and sprinkling a bit of the powder under your tongue. Then, work up to a full capsule.

    One can have a Herxheimer like reaction when too many viral pathogens die off and turn toxic before the body can flush them out. Drink a LOT of water when taking anything which can cause a dieoff of pathogens. Good luck.

    BTW, we have a Transfer Factor Forum here.

    Love, Mikie