Nanie-can you comment on your decision to use abx and confidence in approa

Discussion in 'Lyme Disease Archives' started by herbqueen, Dec 10, 2009.

  1. herbqueen

    herbqueen New Member

    Hi Nanie-I'm still trying to determine my next course of action. I'm still extremely frightened of the abx route . n making your decision, did you gather good evidence that the abx does work for late state lyme? i.e seen good input on the message boards and talk to those who have recovered? Did/do youhave neuro symptoms? Did you doctor suggest IV abx? This neuro disease and the aggressive abx treatment are both terrifying to me.

    Did you have severe herxing on the abx? My recent experience with flagyl ( I could not function for about a week after I stopped it and also found it totally toxic to my system (turned my tongue white/yellow even though I was on diflucan so I don't think it was yeat)) has me wondering if I will be able to function on abx. I need to work (work from home) and be there for my family. Thank you!
  2. Nanie46

    Nanie46 Moderator

    Hi,

    It was an easy decision for me.

    I read the ILADS info, especially Dr B's guidelines...

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    and lots of other info from sites like CALDA, lyme disease association, etc.

    I just felt that it was the way to go. I spoke to the nurse at a LLMD's office and she explained the treatment in general.

    My LLMD uses only oral meds and refers patients who are severly disabled to another LLMD who uses IV meds.

    My worst symptom is pain...then fatigue and insomnia.

    The overall fibromyalgia pain has been present for 22 years. In Feb 2008 I developed severe neck/shoulder/head pain and stiffness.

    The neck/shoulder/head pain is slowly improving with antibiotics. My LLMD told me that the symptoms that appeared most recently would disappear first.

    I have/had lots of other symptoms...

    joint pain, muscle twitching, sound and light sensitivity, blurred vision, floaters, FORGETFULNESS !!, tinnitus, lightheadedness, tingling/pins and needles/stabbing feelings, hot flashes, intestinal upset, nausea, cold intolerance, itching, etc.

    When I started my first course of doxy/plaquenil/zithromax in Feb 2009 I became severely fatigued for a couple weeks....flu-like.

    Instead of going out of the house daily like I was used to, I stayed home most of that time.
    Then I was back to my usual level of fatigue.

    When I was on Mepron/zithromax I had increased joint and muscle pain.

    I did not have any scary herx symptoms. Everyone is different and at a different level of illness/disability.

    My LLMD also tests for and treats hormone imbalances, so that helped alot with sleep, hot flashes and fatigue.

    For the first 9 months I had minor improvements in pain in certain areas..like lower back was not throbbing in the morning, even though it still hurt.

    I was on different antibiotic combos over that time...going off doxy for the summer, due to the sunburn issue.

    I knew I would know for sure I was getting better when my pain was noticably improving.

    I went back on doxy/plaquenil at the end of Oct and 3 days later I woke up and noticed that the left side of my neck did not hurt as much as the right side.

    I was shocked and excited. I wondered if I would ever get rid of this pain. In the last 7 weeks, the pain has slowly and subtlely been improving. I am ecstatic. This pain was very severe.

    I think the overall body pain will take alot longer since it has been present for 22 years.

    It takes 1-3 years for most people to get better.

    My LLMD said he has never treated anyone who did not get better. That does not mean that you are cured forever. There are times when you will probably have to take meds again.

    But it's about quality of life for me. I couldn't imagine living this way forever (prior to treatment).

    If I can get to 95% even, it will be a miracle and I'll take it. If I have to take antibiotics once in awhile to stay symptom free, I'll do it.

    At first I had alot of nausea on doxy, but not on this second round. I think my gut has healed alot from all the good probiotics I take.

    I also follow a no sugar/no processed food/gluten free/soy free/dairy free diet. That in itself can reduce symptoms to some degree.

    I did read success stories on lymenet.org and heard some from my LLMD. Alot of people who have recovered do not stick around those message boards though...they have a life to live.

    Anyways, for me, I went straight for the long term combo antibiotic therapy. I wondered if I was a hopeless case, but now I am VERY HOPEFUL and excited.

    All the best to you.



  3. herbqueen

    herbqueen New Member

    Thanks for the input. I have/had alot of the same symptoms as you... but in the early stages 11 years ago it was more muscle pain stiffness, pain, neck pain, headaches, insomnia--now I don't have much pain (still some on occassion) -now it's mostly neurological for me which has been more devasting for me (optic neuritis, cognitive, muscle jerking/twitching, shakey/weak feeling,brain fog, insomnia ). It's strange that the pain has mostly gone away ( it could be the gluten free diet and supplements/herbs I've been taking the past few years.. but not sure on that).

    I meet with my PCP/GP in January to discuss abx (he uses Burrascano's approach-he will not use IV for fear of losing his license and I don't think I'm up to that anyway altough according to B's protocol you are supposed to be on IV for neuro lyme) and I also meet with a naturopath in January to figure out my next course of action.

    In the meantime I'm continuing the cat's claw and supplements and have decided to add stephania (specific to eye issue and neuro lyme) and see how that goes.

    Thanks again. You've been a great supportive resource on this message board. It's good to hear that your gut is doing well even with all those abx since that is a big worry for me given I have a mother with IBS and sister with colitis and at least that's one of the few areas where I've not an issue with!
  4. Nanie46

    Nanie46 Moderator

    Hi,

    You are welcome!

    I also had alot of brain fog. It has gotten better. I also have exercised at Curves for several years now. That has also helped.

    You are lucky if you have a GP/PCP who is lyme litrerate and follows Dr B's protocol!

    I was never fearful of treatment. I was excited to get started and move towards wellness.

    I think the best advice I can give you is to not expect too much too soon....it's a very slow process....keep the faith....and take lots of high quality refrigerated probiotics at least 2+ hrs away from any antibiotics.

    My LLMD considers fish oil to be one of the most important supps to take also...lots of it...I take 5-6 gms daily.

    If you haven't been on lymenet.org, there are alot of people on that busy board (Medical Questions, General Support, etc) to support you also.

    I wish you all the best with your appts and treatment. Let us know how it goes!