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 Posted 6/6/2012 12:30:41 PM
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Hi all, 

Late 20s F here. Was bitten by tick on camping trip (first and last) abt 7-8 years of age. Test positive for Lyme antibodies, but not all Western Blot markers (or, not enough of them to be dx'd by conventional md's). I have heard many people say I need a Lyme Literate Dr, but I am poor, and not even all that keen on conventional western medicine, so I'm wondering what I can do to manage this myself (because at the end of the day, we're all responsible for our own health anyway). 

I have a lot of health issues that have been ongoing: Elevated CRP (for almost the last year or so), Knee/Hip/Back problems (degenerative disc disease), and, perhaps most devastating on a day-to-day basis trapped as a non-driver in a Major Metropolitan City: hyperacusis/ sound sensitivity and tinnitus (which are really, really troublesome in terms of finding a place to live...and I think I might make a thread about them all by themselves, but if anyone wants to address them)...and I have always had hyperacusis and I have read that Lyme might cause that, and I would really like to take care of the Lyme if only to combat the hyperacusis!

...and finally got confirmation of my sleep apnea (which has been bothering me for years)--though I doubt I'll be able to adhere to wearing the mask at night as my back (see above) makes me toss and turn constantly. I keep low-carb most of the time, but I'm no athlete (though do get activity daily), and so my weight has fluctuated over the last several years. 

Obviously from all these issues I also battle insomnia/ poor quality sleep, anxiety, and depression. Also, generally, I have a lot of family/money/lack-of-job stress in my life (which, unfortunately, ain't gonna change any time soon). 

For sleep I've tried about a million and one things without success (from hops, to melatonin, to passionflower, to 5-htp, to GABA, to valerian [which keeps me awake], to prescription sleep aids [which doctors are always reluctant to provide and which don't work consistently]), so I have near-constant fatigue; "fibromyalgia" has been thrown at me, and lately I've been having weakness in the hands that's been labelled as carpel tunnel. My sleep hygiene is pretty okay; I don't need a primer on that. I do have trouble "shutting my mind off" in bed, though, even if I've exercised earlier in the day & feel physically tired. Even if I journal, call a friend, etc., still have issues "turning my mind off." 

The pain in my hip/pelvis usually alternates from day to day, and the fact that my pain jumps around has led to years of diagnostic wishy-washyness, but it isn't psychosomatic. My right side is weaker than my left, so it seems, but I'm right-handed, so the weakness in hands/ holding writing utensils/ typing has been really depressing. 

Anyone who has any links, resources, insights, experiences would be much appreciated. I am definitely open & willing to experiment with supplements over time as much as my humble bank account allows...

Thanks all,
Kat
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 Posted 6/6/2012 12:48:45 PM
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Welcome to the Forums, Kat.

Have you looked at the information at http://www.lef.org/protocols/lifestyle_longevity/insomnia_01.htm
http://www.lef.org/protocols/immune_connective_joint/fibromyalgia_01.htm
http://www.lef.org/protocols/neurological/carpal_tunnel_syndrome_01.htm and
http://www.lef.org/protocols/health_concerns/chronic_pain_01.htm ?

For sleep apnea, some people who don't like CPAP can be helped with a dental appliance that helps keep the airway open.  Sleeping on one's side is also important. 

What area do you live in?


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 Posted 6/8/2012 8:25:28 AM
Spectator

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Hi--can't believe I got a reply, thank you. I will follow-up on the links--I have a lot of fatigue...as I said, I'd love to self-treat the Lyme, if only to treat the noise sensitivity, let alone get rid of the Lyme. 

I'm having trouble finding good info on what untreated/ poorly managed Lyme could lead to down the line. I am kind of worried as (as I said) I had the tick bite in youth but was not treated promptly at all...yet still have high CRP and still test positive for Lyme antibodies (meaning I definitely have been exposed). Can anyone provide good info on long-term effects of untreated (or poorly treated) Lyme?


I'm in new york city, but have "managed" medicaid and so am limited in that regard. Very little big-picture, holistic thinking. No access to alternative practitioners (that I know of).

I don't just sleep on my side...because of my degenerative disc disease, I'm changing positions all night, hardly sleeping, and I don't know what kind of mask could accommodate this. Any advice on that would help, and if I should re-post this concern elsewhere, please let me know and I will. I am having a sleep study with the CPAP mask next week. 

As regards to the dental appliance, I already wear a mouth guard for bruxism at night. And I had braces for 6 years to correct an overbite that I still (very slightly) have...would these appliances worsen my overbite? Do they protect against the teeth-grinding? 

Thanks all--I really appreciate it.

Kat
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 Posted 6/10/2012 10:55:01 AM
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Had heard that Majid Ali, MD was knowledgeable concerning Lyme disease.  Dr Ali practices at:

140 West End Avenue
Suite 1H
New York, NY 100023
212-873-2444


The dental appliance helps keep the jaw from sliding backward to block the airway.  It is not the same as a nightguard.

For degenerative disc disease, glucosamine and/or chiropractic may help.

 


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 Posted 8/9/2012 3:38:49 PM
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The best site for lyme info is lymenet.org.  Go to Flash Discussion then Medical Questions or Seeking a doctor.
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