I need advice mycoplasm? diverticulitis, low white blood count

Discussion in 'Fibromyalgia Main Forum' started by pepper, Sep 1, 2008.

  1. pepper

    pepper New Member

    Hi everyone,

    It is so nice to be back here reading your posts and trying to get caught up with the happenings on ProHealth. I have been extremely ill and hope that some of you can give me advice before I go further into the world of specialists. I have three questions and would appreciate any advice.

    I spent a week in hospital in isolation because of severe neutropenia (no neutrophils). The hospital hemotologist is referring me to an Infectious diseases specialist because my immune system is so compromised. I am not sure what I need to know before going and I want to be well prepared.

    My naturopath and CFS doctor have suspected for years that I have a chronic stealth infection - mycoplasm most probably but perhaps Lyme or another coinfection of Lyme. I tried low dose Doxycycline but my liver enzymes went crazy so I had to stop. Then I tried Colloidal Silver and Burber and some other herbs and I developed an allergy or severe die-off and couldn't tolerate it.

    Question 1: Bottom line, I want to be treated for mycoplasm. Any advice on how to get this done? What should I ask for? I did feel GREAT while I was on the IV ABX - Flagyl, Cipro, Clavulin and Pip**** - all at once! I was okay on the oral ABX but that didn't last long.

    Question 2: The reason for my admission to hospital was diverticulitis. I was told that if it happens again, they will remove part of my bowel! I am scared to death and have been living on smooth foods ever since I got home. I was told that I had to eventually add fiber to my diet but I don't want anything to get caught in those little pouches.

    Does anyone know where I can find good diet advice for diverticulitis? My family doctor just told me to add fiber gradually as long as I stay away from nuts and seeds and berries. I used to LIVE on nuts and seeds and berries. Won't other fiber get caught in those pouches?

    Question 3: Does anyone out there have a low white blood count, such as neutropenia? Do you only eat food prepared at home that has been scrubbed with soap? Can you garden? I was told I could never garden again or risk eating in a restaurant because of the microbes.

    Thanks for any help and advice.
    Love, Pepper

  2. simonedb

    simonedb Member

    if you have any porphyria it can cause what is sometimes thought to be die off or herx but its not, i would ask them to check you for one of these before you do any more rx too so u know whatyr dealng with

    you can read about it at CPn or google
  3. SerenityPheonix

    SerenityPheonix New Member

    I can only share with you my personal experience re:diverticulitis. I don't believe mine is as serious as yours sounds,but as far as fiber and foods to avoid, we share the same list of things to avoid.

    I no longer eat nuts and seeds, which I used to love. I personally have been able to tolerate popcorn though. I don't know why. Maybe I've just been dodging the bullet so to speak. The one kind of seed that is my absolute no-no is sesame seeds, like they serve at fast food hamburger places. I am able to special order though with no problem. I just ask for two bottom buns instead. From your post it looks like eating out isnt an issue for you, as you prepare your foods at home due to your other diagnosis.

    For fiber in my diet I eat lots of vegetables like carrots, broccoli and beans(there are many kinds of these to enjoy. I avoid the vegs with seeds though. I love cucumbers but I but the English ones, I think they are english...they are the long seedless kind and taste as good as the regular ones. Lots of salad helps the fiber need too.

    Fiber is important in order that you not strain when having a bowel movent as well as to keep the diverticulii clear of obstruction.

    I don't know if any of this helps, but I do wish you the best.
  4. Mikie

    Mikie Moderator

    A gastroenterologist is a good specialist to see. When they do a colonocopy, they can clean out the diverticula where food gets trapped and causes infection. Mom had this done and it cleared hers up.

    Love, Mikie
  5. sleepyinlalaland

    sleepyinlalaland New Member

    My father recently had a first-time attack of diverticulitis, so I googled some basic information for him. All I knew previously is that one is supposed to avoid foods with very tiny seeds (strawberries, etc.)

    Well, this source said that avoiding those foods is not necessary, although it looks like SOME people DO have problems with them (above), so that's one you have to decide for yourself. Here's the very brief intro.to the food advice.

    "Avoidance of nuts, popcorn, and sunflower, pumpkin, caraway, and sesame seeds has been recommended by physicians out of fear that food particles could enter, block, or irritate the diverticula. However, no scientific data support this treatment measure. Eating a high-fiber diet is the only requirement highly emphasized across the medical literature. Eliminating specific foods is not necessary. The seeds in tomatoes, zucchini, cucumbers, strawberries, and raspberries, as well as poppy seeds, are generally considered harmless. People differ in the amounts and types of foods they can eat. Decisions about diet should be made based on what works best for each person. Keeping a food diary may help identify what foods may cause symptoms."

    Bottom line, add fiber....slowly.

    I hope someone can help you with questions #1 and #3, and sorry to hear you have been so ill. Hope things turn around for you.

  6. spacee

    spacee Member

    V. sorry to read you have been so ill. I have had CFS for 22 years. For most of the years my white count has been extremely low. I have even been studied at the National Institutes in Washington D.C. for 5 years because they though surely I would die from it and they wanted to know what infection causes it.Sigh. That was back in the early 1990's.

    I take the Immunefactor #9 that targets mycoplasms. It is pricey. It costs $150ish for 30 capsules. The good part is when you have hit your plateau (meaning that is as good as you are going to get). You can take it by pulsing it like take it every other week or every other day. I just took two weeks off and did fine. Once I took a month off and did equally fine.

    It is sold by doctor's offices and by ordering it directly from the company: Chisolm Biological Lab, 1-803-663-9618.

    Rich Carson who founded this site also takes it. (Which is why I decided to try it). It can make you feel yucky at first. So, you should take it at bedtime and you might want to open the capsule and use 1/2 per day at first. Mikie did her TF's that way at first.

    I think my white count has come with using the TF's. My doc has grown weary of testing me. He hasn't tested me for anything in at least 3 years that I haven't requested. I think my count used to 1.8 and now is closer to 3.0. Maybe a little over.

    Sure hope you feel better.

  7. pepper

    pepper New Member

    for all this information! And thanks, Rainbow, for the bump!

    I have never heard of porphyria, simonedb, but will definitely check that out.

    Thanks so much for taking the time to reply. I appreciate your advice!

    Love, Pepper
  8. Turnert

    Turnert New Member

    There is a test for mycroplasym at least they did 1 on my daughter 2 mths ago and found a non negative non positive result. Strange result there it means she has a chronic infection active but what type noone knows. We are getting her treated with Ibilex as she had an undiagonosed infected tonsil for 5 years prior to getting them out 18 mths ago so the crap from that could have affected her somehow. she is at 80% health now from 20% a few weeks ago. Now that is great though the long tem ABX is a worry.

    Just a thought if you had such an infection?