For Redsox10

Discussion in 'Fibromyalgia Main Forum' started by sarasmom, Nov 12, 2005.

  1. sarasmom

    sarasmom New Member

    Hi! I was just checking in at this site and I always type your name to see if you've posted anything lately. I saw that you hadn't been here since September, but then you had some recent posts.

    I'm sorry to hear about your son having neurolyme. Is he seeing a lyme doctor, too? I was happy to hear Liz is improving. Does she go to school fulltime now?

    How often do you change her antibiotics and how does Dr. J decide what to give her? Sara is on Zithromax and Ceftin and Diflucan and takes Tindamax instead of Flagyl the last 10 days of the month.

    She's doing pretty well, but she still gets down about not having the same energy as a normal college student. She decided not to take more than 12 hours of classes and she got a single room, so she could nap whenever she wanted.

    I thought you might appreciate a little story about Ben, since we have also talked about the similarities in our sons' illnesses. He has been off antibiotics since June and is feeling fine (no dizziness, headaches, etc.).

    However, in September I noticed him going into the bathroom alot. I came to find out that since the 4th day of school he was having diarrhea and cramps every time he ate. He didn't really tell me till it had been going on for over a week. Anyway, I tried Imodium and Lomotil and that didn't help stop it.

    I called the pediatrician and he did a stool sample test. Everything was negative and by now it had been 2 weeks. They sent us to the pediatric gastro doctor and he did a colonoscopy to rule out any physical problems. By this time it had been 18 days and of course I hit the internet!

    I read about irritable bowel and found research about using antibiotics instead of the antispasmodics MD's usually give. Ben had to drink the cleanser the night before the test and he still had diarrhea the morning of it. We were home by 11am and the doctor told me after the procedure that everything looked fine. I asked him if he ever used antibiotics because that was what I was leaning towards.

    They had taken a tissue sample and the results would be back in a few days. Well, not being a patient mother I again hit the computer to find out which antibiotics were used in the various tests. (I have enough of the darn things in the house, I just needed a name to try!!!)

    I finally found a site that mentioned Flagyl and I thought, of course, that made sense. I gave Ben 500mg with his lunch and 500mg that night. He ate supper and had no problems. The next day he went back to school and I kept him on it for a week. He had no more diarrhea and that had been the major problem because he had to leave class all the time to use the restroom.

    The funny thing is that 3 days later, the doctor's office called to say the tissue test was negative for any problem and the doctor was ordering Bentyl (antispasmodic) for him. Of course by then he was fine, thanks to the Flagyl!

    Now, if only I could make things as perfect for Sara, I'd be happy. I'll check back to see if you answer. Take care, Paula
  2. redsox10

    redsox10 New Member


    Funny I checked to see if you posted anything earlier today. Good to hear from you.

    Liz is doing better. She is out with friends right now. She could never handle full time school. She is getting better but slowly. We just saw Jones earlier this week. I just love him. Liz's PCR showed Babesia. He stopped the Minocycline for now and put Liz on Mepron. She is to remain on Ketek and Ceftin. I think the Ketek is what has really helped her. Her brain fog is improving. We go back to Jones in Feb.

    My son with the neuropsych lyme is my healthy one. Not the one I think has Lyme. Looking back he has had abdominal issues for years, headaches, severe learning disabilities. He is 25. The last year he has had musical halluciantions and never told anyone. I noticed tremors and swellimg in his fingers In July he staretd with auditory halluciantions. Never told us but was not himself. He stopped going to work and never told us. In Septemeber it all came out when he drained his savings. Dr. Jones the angel he is ordered western blot and PCR. He is postive for Lyme and Babesia. Jones started meds until we get him in to a llmd. We have an appointment with Dr. H. in Hyde Park at the end of the month. HE just had an awful chest cold and I am wondering if it could of been a HERX. He recovered quickly. This Lyme is scarey. I feel bad for him Adam is engaged and the wedding is in May. Thank goodness I knew about neuropsych lyme. I would hate to think what road we would be on.

    Poor Sara. I give her credit to be away at school. Smart choice not to push herself. Is she close to home? You asked how often Jones changes meds. He stopped the Biaxin in July and added Ketek. At the end of Aug. he added a small dose of minocycline 50mg twice a day. Now started the Mepron for the Babesia and stopped the mino but she will msot likely go on that again. Many have luck with the Ketek.

    Do you think Ben's abdominal issues could be Lyme? Abdominal issues are big with Lyme. Good thing he has you for a mom.

    My midle son does not want to be tested. He nees to in the future. He is a junior in college and he wants to get through. he is taking 15 hours. He thought about taking 18 next semester. He needs one more class to graduate on time and would like to take a summer job next summer out of town. I told him not to push it. Adam was overworked, not eating well when he got sick. I think a dormant Lyme comes out when you are not watching your health.

    Do you ever go to I am fatigued15 on the forums. If you private message me we can exchange emails.

    Thanks for checking in. I am happy to hear Ben is doing so well. Sara will recover. Jones told us from the beginning it would be slow and about 4 years. We can see the light.

    Hope to hear from you soon!!
  3. sarasmom

    sarasmom New Member

    Thank you, thank you for such a quick answer!! I do read a lot on the lymenet site and funny you should say your screen-name on there. I just read yesterday the discussion on Ketek and I saw your comment and clicked on the screen-name and saw the person was from NY. I wondered if that was you or not and here I find out it was!

    I really would like to to e-mail you and share info. You have a lot going on with all your children and you are doing a great job getting them better. I agree with you that this lyme stuff is crazy. My husband was tested for babesia at his lyme doc's and we get the results in 8 days.
    I think he has it because he has lost 30 pounds over the last 6 months and hasn't been trying to.

    I'll get in touch with you at the other site. Thanks again. Paula

  4. redsox10

    redsox10 New Member


    Looking forward to your email. Private message me on the other site and I will send you my email.

    What do you know about Mepron?


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