Still in downward spiral! Need Help

Discussion in 'Lyme Disease Archives' started by herbqueen, Jan 2, 2010.

  1. herbqueen

    herbqueen New Member

    Hello Everyone- Need some advice. Since my first pharmecuticals (Diflucan/Flagyl treatment)

    that I started week before Thanksgiving (8 days flagyl/21 days diflucan) I've been in a

    downward spiral. Prior to that I began to have a flare up but was functional and although not

    sleeping great, was still sleeping. Since the diflucan flagyl I've been in a downward spiral and

    totally non functional/not leaving my house. I am a Type A driver person and throughout my

    FMS and probable lyme diagnosis and ups and downs kept going and was leading a mostly

    good life despite my neuro symptoms. (optic neuritis, coordination, some shakiness, twitching, brain fog_

    Now I've totally stopped sleeping (trying melatonins, was already on 5HTP, nervine herbs, over

    the counter sleep medication, and old ambien prescription and nothing seems to be helping). I

    can get a few hours of sleep on the tylenol/pm type medicines /that drug that's in it. I think

    that is the same drug as benadryl. Worse my body is jerking (head , hands, legs) and constant

    twitching all over. I also have this non functional dizzy weak feeling in my head that makes

    me feel really ill and not able to do much. Feel weak, shaky, brain fog, coordination issues, some numbness I didn't

    notice before etc. Neuro symptoms all on over drive and quite ill.

    I see my PCP who wanted to start lyme abx treatment this Thursday for 1 hour. I don' t see

    how at this point since I'm so ill I can possibly add anything into the mix. I also have an app't

    with a naturopath who supposedly has lyme herself. Prior to this/past 3 years I saw an osteopath and did zhang until nervous system explosion. Then LDN/candida diet (stabilized felt functional , brain fog improved but did not go away). Went off LDN for past year since I didn't think it was doing anything and continued some of buhners herbs past 12-18 months (cats claw, devils ,similax)

    I think the lack of sleep is making everything worse. I had an explosion of symptoms similar to

    this 2.5 years ago when I was combining zhang and buhner protocols (ramping up). It took

    me 4 months or so to recover and never got back to baseline but functional able to life life. But this time I feel a whole lot sicker and jerking /jerky

    movements, numbness etc. are a much worse and have stopped

    sleeping (last night even with ambien only got about 2 hours)-I've barely taken ambien in the

    past and so had a bottle my dr first prescribed to me 3 years ago when I had the optic

    neuritis attack/neuro symptoms took off and was having problems sleeping.

    The whole neuro degenerative illness (before I just though I had "FMS" ) is so terrifying! Not

    sure if I should try to see another neurologist. I did see an MS specialist/neuro in Boston when I had

    my first devastating explosion of symptoms on herbs 2.5 years ago and tested negative for MS

    at that time (MRI was normal/they did not do spinal tap).

    I'm so frustrated since I can't seem to do basic things the past month. I need to be here for my kids and my family. I've worked for the same company for 26 years, but not functional now and wondering if I should ask for medical leave. I'm not sure how I will function this week.

    Thanks for listening... just really scared and miserable right now and tired of fighting the battle right now. The fact that I can't sleep gives me no escapte or break from how ill I feel and I know I need good sleep to heal. Dreaming of " healer" who can just take all of this away! Saw "green mile over holidays on TV"--wish that person existed!
  2. Nanie46

    Nanie46 Moderator


    I am very sorry that you feel so awful.

    It sounds like a real herx.

    You must be killing some bugs.

    Obviously addressing the sleep issue is key.

    My LLMD tested all my hormones and started my on bioidenticals where I was lacking, which helped me alot.

    I think I would ask the Dr to concentrate on stabilizing your sleep and other symptoms for now.

    I take progesterone at night and use sublingual melatonin at bedtime. Others use a wide range of meds.

    Others may be along to suggest other things.'s medical questions board is very active, so there are alot of people there to answer if you want to post your question/problem there.

    Sorry I can't provide an easy fix for you.

    I understand what you are going through. My insomnia was like that before I started bioidenticals.

    God bless you...I'm praying that you find something to help you sleep while you get through treatment.

    Keep the's a long road, but you are not alone.
  3. herbqueen

    herbqueen New Member

    Thank you Nanie-you are a real voice of support on this message board!

    I stopped abx over a month ago so I don't know who I could still be herxing? The other thing

    that concerns me is the last time I was this was 2.5 years ago when I had a similar explosion on

    herbs. I stopped all herbs and started LDN( on advice of a dr) while I got checked out for MS

    (MRI). It took me over 4 months to get functional again and start sleeping. But functional after

    this "herx" was worse than before with new neuro issues which never went away (worse brain

    fog, slight shaking in my left hand etc.). I am very chemically sensitive and I struggle on

    whether my body has a "flare" versus a herx from the drugs and herbs?

    Also I can remember when I was in college around age 20 (I'm now 48) having some weird

    twitching in my legs that went away and some shoulder pain. I did not grow up around ticks. I

    know live in New England/Lyme endemic region (last 25 years). I still wonder about immune issues and family history (mother with fms/cfs type issues but not the neuro issues I have).

    I know no one has the answers. It's all so confusing and I don't want to create more

    damage/lasting neuro issues........ It sounds like abx is going well for you and you can tolerate

    the drugs quite well. I wish that were true for me!

    Thanks for your support!