Stepping over from the CFS/FM board

Discussion in 'Lyme Disease Archives' started by Daisys, Sep 18, 2007.

  1. Daisys

    Daisys Member

    It's been 6 months now that my LLMD has been information gathering, and today finally he's satisfied that I have Lyme disease. (There's been a couple of botched tests that held things up, very frustrating to wait this long!)

    I have been on 200mg of doxycycline twice a day, and starting today, I'll be taking 500mg of ceftin twice a day.

    My story: In 1978, I came down with a terrible flu. It took years to gradually get better.

    I was in (almost total) remission for a few years, and then got very sick. I had a serious enteroviral infection. I have never been well since then. From then on, I had insomnia, and was later diagnosed FM by tender points.

    A year and a half ago, I finally found a good doctor who treated me with the Teitelbaum protocol, and brought me close to remission. Then I got hit with something--I'd call it relapse, but it seems like a different illness. There was terrible pain.

    Just at that time, my doctor moved to a teaching position in another state, and his partner agreed to take me on as a patient. He's a LLMD, and the first appt. told me I probably have lyme disease, just from looking at my record.

    So, the jury's out, but I either got CFS, then FM, and then lyme--or I got lyme, and it's been progressing.
  2. victoria

    victoria New Member

    No surprise overall; I think there is a huge overlap between CFS and lyme... it can wax/wane as to its symptoms too. As you probably know, it hits you wherever you're genetically susceptible.

    Are you herxing? If not, the particular abx is not working...

    You might want to ask your doctor about using Flagyl also, as it's known to attack the 'cyst' form of Lyme. My son's LLMD has had him use this routinely every month.

    The other thing that I think has really helped my son deal with herxes is that the meds are given in 'pulses' - weekends off, and meds are only taken 2-4 weeks/month. If he's reached a point where he's herxing really badly, he may go off all meds as long as 3-4 weeks.

    Those breaks really help the body to detox and settle down; his doc says there's no problem since Lyme is such a slow-reproducer.

    Also, you might want to ask about IV glutathione - done every 4-5 weeks, it really helps the body to detox from the endotoxins. Hyperbaric oxygen can also be of help.

    Don't mean to overwhelm you with info... just meant to welcome you LOL... some good sites besides here to read good info is ilads.org, they also have a lot of good links to other org sites for Lyme.

    All the best,
    Victoria



  3. Daisys

    Daisys Member

    Thank you for the welcome.

    I'm just beginning to seriously look into treatment options, so I'm already overwhelmed. Of course, right now I'm following doctor's orders, but he's open to my questions. I'm sure I'll have a lot of them at my next appt--2 months away.

    I have a feeling of waiting for the second shoe to drop. I don't suppose I can go thru this without any unpleasant detox/herx experience.

    When I was on doxy alone, I felt the same as off it, except the doctor pinpointed some changes (less pain for one), so the detox symptoms may have been the same as my usual low energy/brainfog condition. Hopefully, that will be my herx, I can deal with that.
  4. victoria

    victoria New Member

    from everything I've read & others' experiences + my own...it seems it is not really a herx unless it is a worsening of symptoms. That just seems to be the 'hallmark' of a herx reaction unfortunately.

    So your doctor may want to try you on a different abx at the next app't altho perhaps adding the ceftin will make the difference.

    Yep, it kinda does feel like the other shoe dropped... didn't know I could feel worse! until I herxed. It's hard to keep in mind it's good thing....

    all the best,
    Victoria

  5. cherylsue

    cherylsue Member

    In the past I refused any supplement that made me herx. I had to buckle down and accept herxing now that I'm on the cumanda/burbur nutraceuticals. There were times I just cried. I spoke with my naturopath and she told me to back down for a few days and try again, much like Victoria mentioned with the ABX.

    My symptoms just increased, although I hear you can get new ones.

    Anyway, today I increased my Cumanda drops by 1, to 12 drops per dose. I'm having a bad day.

    Hopefully, this is all worth it.

    Keeping my fingers crossed.

    CherylSue
  6. Daisys

    Daisys Member

    Comments from both of you have made me thoughtful. It's so hard to figure out if I'm having my usual symptoms, or if it's a mild herx. And I wonder if the same holds true as with AVs--some react right away, and others later on.

    I'll be going back over my journal to look for clues. I wish I had been keeping up with personal record logs. I have energy, activity, and symptom logs that are hard to remember to fill out, but would now be valuable if I'd only done it all along.

    One thing that does figure into this herx puzzle is the fact that I have aggressively been working on my health. I use supplements for energy and general health, the methylation cycle protocol, traditional chinese medicine, acupuncture, and a comprehensive program for digestive, gut health, and detox issues. I've been getting good sleep, hormonal support, and have been using oil of oregano, olive leaf extract, and coconut oil for quite awhile. Maybe the bugs are all in cyst form waiting for a better time.

    Thank you both for posting. I will have questions for my doctor next visit.