sleep disorder....

Discussion in 'Lyme Disease Archives' started by lagf, Jan 26, 2007.

  1. lagf

    lagf New Member

    Would like feedback on the level of sleep disorder that your lyme is causing,.....what helps...what does not.
    Thank you
  2. pawprints

    pawprints New Member

    I've been off the boards for awhile. I wonder how your daughter is doing? Please update me as we are doing some similar treatments.

    Lyme totally affects sleep. I still use Klonopin and an antihistimine to sleep and occassionally Lunesta or Ambien. Has she tried the Amantilla yet? I find that helps relax me but I need to do it 30 drops for the first 15 minutes and then 30 more drops the next 15 minutes.


    PS: After doing full dose Banderol I will be switching to Cumanda in 2 weeks and then rotating. I think I see some improvement but must still need alot of detoxing done.
  3. lagf

    lagf New Member

    She is doing better with rotation of meds. I do think the rife is helping...and infrared sauna. Still not doing well with sleeping. Ambian does not work...she sleep walks.

    Trazadone was working but not now. Is on Klonapin but was mixing with ambian which does not work. still do not have a good consistant situation with sleep and she does not go to sleep until five or six in the morning so her day is ruined.

    How are you doing .....we think bonderall is helpful. Seeing the doctor next week for more indepth analysis....
  4. pawprints

    pawprints New Member

    Glad to here the Rife is working. I may look into purchasing one if I continue to hear good things about it.

    As far as sleep, check out doing the Amantilla to relax her and then adding in a sleep med. How about Lunesta? Or Ambien CR? She may need a cocktail of Klonopin, Nuerontin and Doxepin. Just some thoughts.

    I like the Banderol but will be switching back to Cumanda in 2 weeks.

    I am having more back pain than normal and not sure why. I am not scheduled to see the doctor since he is out of town for me. She is seeing Dr. S who is using Dr. C's methods. Right?

    I need to get more detox done but have not pursued them.

    Warmest regards
    [This Message was Edited on 01/30/2007]
  5. lagf

    lagf New Member

    Yes...we see Dr. S and it is Dr. C. protocol.

    Because of sleep issues we also use a psychiatrist for a long time .....and she suffers from depression and body pain ....depression mostly from illness. He has started her on cytomel which is a new drug being given to fibro patients for body pain and general depression. Might me something for you to inquire about with your internist or perhaps Dr. S. He does not know that we have started on this....see him next week. I do think it is doing some good.
    keep me posted with your progress.
  6. pawprints

    pawprints New Member

    Same here with doctors. I like them both and feel comfortable with them.

    I am trying not to start any new drugs right now as I suffer severe side effects.

    I want to talk to Dr. S about the antivirals they are talking about on the CFS Message board. I know Dr. C will say that the NutriMedix products can kill off viruses better than any drug, but I am still interested.

    My case is complicated and I don't think there is one path.

    Here's to continued progress for your daughter!
  7. victoria

    victoria New Member

    My son, altho he's only 19 (now) has been using melatonin, 1 mg, for a few years now. It's the only thing that doesn't give him a hangover altho doesn't always work... his LLMD said he didn't have a problem with him taking it at that dose.

    I'd also read that often smaller doses work better than larger, like even less than 1 mg.

    I take L-tryptophan plus melatonin... also have to take an antihistamine anyway so I don't awaken with bad sinus headaches.

    Hope this helps...

  8. lagf

    lagf New Member

    Thank you victoria....her disorder is very bad and this is just not strong enough......wish it would work.
    always open to other ideas. We have done the sleep test etc. and this is going on for about ten years....much worse in the winter then summer.
  9. pawprints

    pawprints New Member

    Checking in. I had one thought for you and your daughter. It may take a combination of natural and prescription drugs to get her to sleep. Perhaps something like 5-HTP, etc. plus a strong sleep med. Have you looked into Xyrem? Perhaps Dr. S could muscle test her for several supplements and prescriptions at the same time and see if any combination works.

    Good luck.
  10. lagf

    lagf New Member

    Had not thought of muscle testing sleep meds. Good idea. will let you know.
  11. lagf

    lagf New Member

    For your info.... the doctors did not reccommend rife to me. I asked them. I really think they are hesitant to initiate the conversation. Also....I asked both and Dr. C was the one who gave me the contact person and the frequency and how to use on my daughter.
    Thought you should know this.....also...I can post my email and you can contact me not see any harm in that and I will give you the reference on rife. I am sure that if you discuss with doctors they are open to it. It is helping her.
  12. lagf

    lagf New Member

    I will call Sandy later today and give her my email. What city are you in.....
    I purchased the rife and it is helping. I would encourage you to inquire with Dr. S about it. They will not bring it up to you in an agressive manner.....but it is helping. need to be capable with the computer to use as it is connected in that area.
  13. lagf

    lagf New Member

    I left email with Sandy.....lagf
  14. pawprints

    pawprints New Member

    Thanks. Gor the info today![This Message was Edited on 02/12/2007]
  15. nyssagirl

    nyssagirl New Member

    I had sleep problems with for years, it was terrible. I tried everything. Melatonin made me sick and didn't always work. I did well on Ambien, but couldn't stay on it for a long period of time. I have been on Trazadone for a long time now and it does work for me. I take 50 mg. At first, I had to take 100 mg. Hope you have found something that works for you!
    Good Luck!!