Discussion in 'Lyme Disease Archives' started by herbqueen, Apr 6, 2010.

  1. herbqueen

    herbqueen New Member

    I can't reply on my original post.

    Glad you are continuing to improve-

    I don't remember MAPS-what are her symptoms-

    I'm so scared right now given how far down I have come and sleep which was almost non existent had gotten worse in last 2 weeks-numbness spreading. I need to sleep again to turn this around. I can't imagine doing any treatment w/o sleep.

    How can I have SO many symptoms/gotten so much iller than November.

    Trying to put my trust in God and doctors to overcome my fear-but it's not working.

    I remember reading a post on what you used for sleep-/can you share that again. Melatonin brand etc. Melatonin prior to this crash worked for me-now nothing/even sleep meds are working. Maybe I need to try a different brand of melatonin. I sometimes wonder if my health issues have to do with the fact I've never been a deep/good sleeper my whole life.
  2. Nanie46

    Nanie46 Moderator


    maps's symptoms (and I'm sure I don't remember all of them) were extreme fatigue, chills, sweats, cognitive problems, numbness and tingling, and many others. You can do a search by user name....she had to get a new user name once, so some of her posts are under "maps" and some under "maps1", I think.

    For sleep I use several things....I started bioidentical hormones last year which helped....progesterone at night, estrogen and testosterone applied to skin in a.m., DHEA in a.m. (most of us have high cortisol levels at night instead of a.m and DHEA is to increase it in the a.m.)

    I use some supplements:

    I use sublingual melatonin 15mg (high dose, many people use much smaller doses) at bedtime. I buy 5 mg sublingual tabs, Source Naturals brand from the Vitamin Shoppe.

    They also sell sublingual tabs that are less than 5 mg. Oral melatonin does nothing for me.

    I take other supps that can help with sleep but I cannot say if they have helped with it or not.....




    My LLMD says that even the alpha lipoic acid and acetyl l-carnitine can help.

    Can you get to a LLMD and try IV Rocephin?

    My memory isn't very good, so without your history in front of me, I can't remember it.

    I am sorry that you are feeling so much more ill than you were in November.

    What can I do to help you?
  3. herbqueen

    herbqueen New Member

    Thank you Nanie-

    I wish I wasn't so sick and so darn sensitive. I'm still so terrified of abx since I've gotten so sick 2 years ago on herbs and now just a few weeks of drugs for a fungal treatment I wanted to try (first pharmecuticals I've taken in over 12 years flagyl 1 week, diflucan 3). Those drugs pushed my weakend state off a cliff and I through in a few herbs at the end which contributed. It pushed me into literally neuro hell -I'm 100X worse than where I was in November- with MS symptoms plus a whole lot more/in agony. Similar situation 2years ago on herbs- but his is so much worse since I as sicker to begin with. I'm so afraid that if I take more drugs I won't be able to walk,lift my head etc and will make me so much worse since I'm so sick now/not sleeping. Having a hard time getting over the fear factor-- and where this illness is headed. I know I have chemical sensitives and my liver does not detox well according to genova lab testing.

    A friend connected me with a naturopath. I wasn't going to call her since I've done so much with naturopaths and herbs and right now my body can't tolerate anything but decided to call her anyway-- after hearing my case and how sensitive/sick I am-she suggested homeopathy and one of the top homeopaths in the country/one of her mentors who specializes in MS/neuro disease. I have a phone consult with him today.

    I don 't know if I believe homeopathy can reverse/stop the progression of this illness. I wish I could go back 4 years and try abx when the optic neuritis first hit and my illness shifte from fibro to neuro-I was so much stronger than and was jut beginning to get the neuro symptoms-but can't go back. I realize the longer I wait the hard to treat-but right now I'm so sick I can't imagine being sicker since I won't be able to function at all. Right now can't do mch of anything- even taking a shower is a challenge etc. And my sleep cycle has always been delicate- so I don 'tknow how I can possibly heal if I can't sleep on treatment.

    I feel like treatment has progressed my illness-first with herbs and now with just a few drugs. At the sametime in November I new I was sliding and needed to something. I had an app't with my gp/llmd for january for abx/lyme consultation (he is a knew llmd now)- but the fungal treatment pushed me off a cliff. When my GP/llmd saw how sick /neuro I was he said I had to go to the experience guys like raxlen or horowitz-- I have an app't with dr. h on the 5th.

    I am so much sicker than the folks I see on lymenet. I wish I could talk to more neuro folks who recovered-i'm having hard time finding them.

    Not sure you can do anything- just need prayers for healing and guidance. I don 'tknow what to do. I'd like to try the homeopathy -and wish I'd found this source 2 years ago- I know it that doesn'twork the illness will continue to go deeper.

    Thank you for listening-

  4. Nanie46

    Nanie46 Moderator

    I am so sorry that you are so sick.

    I wish I had the answers for you.

    I sure hope Dr H can help you. Don't lose hope. There have been many very sick lyme patients who got LLMD is one of them.

    Praying for you!!!