I'm writing for advice, stories, thoughts on how to help my girlfriend. After decades of problems, she was diagnosed with Lyme two (?) years ago and has been getting treatment.
She stopped treatment in October out of frustration and doubt and has been getting worse. I have also been diagnosed with Lyme, but have more or less recovered.
She was diagnosed with Lyme in I believe 2009, but her doctors (rheumatologists and others) dismissed it and kept her on RA drugs.
When she met me I encouraged her to see my doctors. They confirmed a clear Lyme diagnosis via blood testing. She's been doing IV and oral abx, plus some more out there things like hyperbaric O2 and ozone treatment.
She's paid a lot out of pocket and feels she hasn't gotten better, though she did say she had good days before she stopped getting IVs.
I don't want to get into all the non-Lyme psychological things that could be contributing. I know it's her choice, but she's getting worse and it's put a real strain on our relationship.
Who knows about anything in this world, but we have solid Lyme tests and she was only doing the abx for a year-plus. She's been sick for at least 20 years so my feeling is she just needs more time.
I'd appreciate any suggestions on how to encourage her to resume treatment, as well as stories of how long it's taken others to get well, or at least get the disease under control.
Suggestions on helpful doctors appreciated as well--maybe she'd feel better with a second opinion from a LLMD who won't blow her off.
To encourage others, I got sick in April 2002. I was completely debilitated and could barely work. I found a doctor to work with me and started on nothing but daily minocycline in 2003 or 4. It took several years but I started feeling something like well in 2006.
I got the Lyme diagnosis in 2009, and after abx from that I started feeling really well in summer 2011. I still have issues now and again but they're more annoying than debilitating.
Thanks in advance.
(breaking up the post for easier reading for many here)
-------------------- Lyme by Igenex 8/2009. Sx of coinfections but no positive testing. Posts: 27 | From Seattle, WA | Registered: Jan 2010
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posted
Hi - good for you for getting better! And for helping her here. If you want doctor referrals, you can make a post in Seeking a Doctor and put WA in the heading.
So what would I say? Personally, I've heard enough testimony in support groups to say keep going, that sometimes it takes awhile to turn the corner on symptoms, but when it happens, it makes it all worth it and that person has a smile on their face again!
If you say she had some good days while on IV, I'm wondering if that's where she needs to pick up again.
And be working with a doctor who can explain to her about standard time duration of treatment. Perhaps to get her to have a consultation with a doctor who does IV would be a good first step.
Also, Lyme gets treated in three areas - kill/deter the organisms, detox, and fortify the body. I think she should be working with a doctor who's comprehensive.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Books by Stephen Harrod Buhner, a LL master herbalist offer a great deal of information. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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She need to be re-evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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