Discussion in 'Fibromyalgia Main Forum' started by futurehope, Apr 4, 2006.

  1. futurehope

    futurehope New Member

    Hi Stormyskye, I hope that you are doing well.

    You are so knowledgable!!

    I have a some questions for you.

    I am a person that is somewhat different from the majority of people on this board.

    I get high WBC's sometimes, once in the 19,000's. Since October I have been chilled, had strep, the crud, have had chills and weakness.

    And of course, I do have CFS, have had it since 2002.


    I just found out that I have Chronic EBV thru an Infectious Disease Specialist that took bloodwork to test it. This scares me, as I have already had cancer once. I know I have already had it once back in the middle 1990's when it was initially activated.

    My questions are:

    1. Will the probiotics help me get rid of the Chronic
    EBV, meaning will it put it in the latent/silent mode.

    2. Will the probiotics help build up my immune system
    since I have had so many bacterial infections?

    3. Is is safe to safe to switch to a different probiotic
    once every two months or should I switch off more

    4. Take it on an empty stomach or with food and water?

    5. Take it in the AM or PM?

    6. Can I take them with other meds?

    7. Should I take them forever?

    8. Will the herx be bad?

    9. Are they OK to take during a surgical procedure?

    I got my Docs approval to take them, but of course, he acted like they would not help me.

    The infectious disease specialist told me that there was nothing that could be done for EBV and left me hanging.

    One more thing Stormyskye.

    I often google things to see what will boost my immune system.

    Then I go out and purchase these supplements. I post on this board and then some people will write back and say "Oh no don't take that".

    For instance, I purchased a supplement, posted and someone wrote me and said "don't take that" our immune systems are already in overdrive that that will only make it worse and over-stimulate.

    I am so at a loss that I have not taken one thing that I have purchased and I have about 6 different things here at home.

    I am very frustrated. I want things to help, not hurt me.

    I am sorry this post is so long Stormyskye.

    I know that your opinion is of value to everyone here, this is the reason I wrote to you.

    Love and prayers,
    [This Message was Edited on 04/04/2006]
  2. futurehope

    futurehope New Member

    First of all, I want to thank you for the advice you have given me! It means a lot. More than you know!

    I just wanted to say to you that there are tons of people here that value your opinions as they should, you are doing so well!!! And for the ones that do not, who cares, you don't even know them personally, so it should not bother you!!

    Those are my beliefs.

    I also feel the way you do, I want to be here for my daughter as she grows up, she is 14, and I need to be here for her. Also, I am not an old bird yet, so I am not ready to go.

    I read Wildwoodlane post. She sounds alot like me. She must be having some of the same problems. I have saved that post and marked it important!! I am going to print it out and keep it!!

    One other thing I wanted to mention to you about myself. I am EXTREMELY SKINNY and am trying to gain weight 5' 3 1/2" lbs and only weigh 86 lbs. All my bones stick out.

    I am trying to gain weight for my health as I know this is not good for my body to be so thin.


    I now understand the true importance of probiotics!

    That is the first I will mention to you that I have purchased. They are the Jarro-Dophilus EPS. I will start taking them tomorrow!

    Magnesium and Milk Thistle - I learned that I cannot take these because they will interfere with my Klonapin (benzo) as I have severe Panic Disorder.

    Is there anything else out there to use for liver support besides Milk Thistle???

    Ester C - That one you already know about.

    Glucosamine Chondroitin plus MSM

    Ultra B Complex Vitamins

    Odorless Garlic Pills - I did not realize until after I bought these, they are 1250 mg. Way too high of a dose.

    That is what I have.

    Is there anything you can add that will target the EBV specifically and all of my bacterial infections?

    You name them and how often I should use and I will go out and purchase. I want to be well again!!!

    I have been on 5-6 rounds of Antibiotics since Oct. 2005.
    Even been seeing a Oncologist, so I am under SEVERE stress to top it off.

    Oh, and I will be sure to eat some raw veggies every day, I like raw carrots, califlower, radishes and lettuce. Hope those will help!!

    Thank you very much Stormyskye, you are the best!!

    Love and prayers,

    [This Message was Edited on 04/04/2006]
  3. futurehope

    futurehope New Member

    I did not mean to worry you about the cancer. I have been seeing on Oncologist because of my high WBC's. My regular Doc. sent me to him.

    I have had a Bone Marrow Biopsy and and Pet Scan. The bone marrow biopsy was good, so no leukemia. The Pet Scan was also pretty good, but had some weak light ups which showed infection/inflammation around the mouth, neck area. It was not black, so it is not cancer either. But the Docs need to find out what is causing this because it could lead to bad things. The condition is called lymphadenitis and there is also tissue inflammation around the area.

    Oncologist kinda left me in the dark about it all until I started reading up on the condition and got scared. He gave me a 2 week supply of clindmycian and said to see him in three months for another WBC count. That will be in May!!

    Therefore, that is why I am so stressed out.


    Do you still advise your protocol listed above? Did you go a little agressive because you thought I had cancer. I think that cancer has been pretty much ruled out. But I still have to see him again to check for the high WBC's.

    Is there anything that will help the liver besides Milk Thistle?

    The Pau D'arco sure sounds like an all around good thing to take. If so, can I find it online? Or the drugstore? Also, do I used it everyday and never quit, or do I give myself a break from it once in a while so my body does not become immune to it?

    Will the Pau D'arco target by EBV and bacterial infections?

    I'll take your 15 pounds. Wish you could give it to me!! I believe the reason that I am so thin is because of stress and medication. Effexor to be exact. I went off of this drug for 5 months last summer and gained 8 pounds while off of it. I ended up having to go back on it because my panic go worse again, once again got real thin.

    I do drink whole milk!! I do not like avocado though. I am so picky, sorry. I don't like dried fruit or fruit at all. OK, I admit, I can stand an apple, but that is it. I do like Grape and Apple Juice though, would they work too? This is partially why I bought the Vitamin C Supplement. I also drink Boost Plus twice a day to try and help with weight gain.

    Do you advise backing off and starting slowly since you know I don't have cancer. Gosh, I am so sorry about that.

    I will hang onto the milk thistle and mag. I am hoping someday that this panic will go away. Life would be so much better.

    You asked which meds is take now.
    I take Klonapin, Effexor and an Asthma (steroid) Inhaler in the evening (1 puff), I have asthma. That is it. Except Advil.

    I will check out the juicers real soon. I am glad you mentioned heavy on the carrots, it is my favorite raw veggie.

    Sorry to be such a pain the ____.

    Thanks Stormyskye,


    [This Message was Edited on 04/04/2006]
  4. futurehope

    futurehope New Member

    I read both of those posts and found alot of information. Thanks for bumping them for me.

    I have to say that I was very moved by the "C" post. Your story was very sad and I am so glad that you are better. I will not say anything more, those days are gone!!!

    Just want to run a few more things by you.

    You did not mention the probiotic in your last post, but I am assuming that you still want me to use this, is this right?

    Since I have it right here in my home I will start with that now. Does this sound OK?
    In the meantime, I will order the Pau D'arco online because I have never seen it around here. Small towns, ugh!!!
    I will immediately work on saving $$ for a juicer and start using it as soon as I can.
    I will drink lots of water.
    OK, I will try blueberries again. It has been a long time since I have tried them, maybe my tastebuds have changed. If I do not like, I will pinch my nose, so I can't taste!!
    Will those raw veggies still work for me too, since I love them so much!!!!
    Can I still take my Vitamin C? If so, is AM OK, it will not interfere with anything, will it?

    A few questions

    1. I know that you are supposed to alternate the Pau D'arco with something else every few months. What would be the best things for me to alternate with?

    2. What is a green food supplement?? (Sorry for being so stupid). And where would I find it? Is this something I would take everyday or alternate also every few months also?

    3. Do you want me to take the Garlic with the Pau D'arco or alternate them every few months? Little confused there.

    4. You say you do not want me to herx. Is this because of my weight problem??

    No, I don't like fruit, strange, I know. I love vegetables though.
    On the other hand, my daughter loves fruit and hates vegetables!!

    I pray someday I can get off of my medication for my panic, and hope all of this helps!!

    I am glad that I am not a pain for you. It is like other people said in the two posts that I have just read. We are all so glad that you have stuck around to help others!!

    I have plenty of empty journals here at home. I will be sure to keep it up everyday. That is a great idea!!

    HUGS to you Stormyskye for taking the time to see me thru today!!!!

    Love and prayers,
    [This Message was Edited on 04/04/2006]
  5. futurehope

    futurehope New Member

    I just wanted to say "THANK YOU" for your help today!

    I finally understand it all. You gave me a great protocol and I appreciate it.

    Keep on taking care of yourself Stormyskye!!

    Love and prayers,

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