Me and my 8 year old son were bit in April and I was diagnosed in June. He was just diagnosed last week. I've been on antibiodics since June and some symptoms are getting better. However I still have the joint aches, muscle pain and stiff neck.
We see a LLMD in August. The ID doc said he has no idea when symptoms go away. That we'll always test positive on a WB for the rest of our lives.
This is so depressing. My anxiety is driving me crazy and creating its own unbearable symptoms. Reading the blogs and posts makes me feel hopeless.
I'm grateful that I caught it early I just don't feel that it will ever go away. Will we be sick forever?
Posts: 9 | From Pittsburgh PA | Registered: Jun 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Kell, I believe like Byron the cure is out there. There isn't a member on this board who isn't turning over every rock to find it, and guess what, some have.
I believe we are the answer to the cure as a lyme community, we need to educate ourselves and our practioners. On this board right now there is great synergy to finding that answer. We are looking at ABX, new ones are being created specifically for lyme. There are the alternatives, herbal, diet, light, sound, homeopathics, and protocols combining them. I believe these will be packaged to make us all well. And I don't believe it is all that far from our reach.
So when you see a rock in the road it won't push itself. I push it because I know with persistence and perseverence it will move.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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posted
Their is no true cure if you have babisia. Just like Malaria. I also heard from a back door sourse of a great LD stating their is no cure for late Lyme D.
Posts: 2 | From PA & FL | Registered: Jan 2011
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quote:Originally posted by phyl6648: [QB] Most doctors say early stages yes, late stages NO and this came from a doc in DC..There is management and treatment for late stages but no cure.
Mine was VERY late stage.
Being a defeatist about it won't help anyone get well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Camp Other
Unregistered
posted
Lymetoo,
How long did you have Lyme before you got treatment, and how did you figure out what was wrong?
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I am also well. I had Lyme since the early 70's and "managed" it with diet, exercise, supplements, herbs, etc. I didn't know what I was fighting but knew it was something. Most of the supps are on Dr. B's recommended list and I had figured out that they worked without ever having seen that list.
Then I got bitten again. Three years later, was mostly housebound. I had babesia and bartonella with the Lyme. Also parasites.
I got better. I have been well since Aug. 2009. It's not easy, but it can be done.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Kell, August is a long way away for an LLMD appointment. There are a couple quality LLMD's in our area and am sure you can get in sooner with one of them.
Oh, go Steelers!
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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posted
I was diagnosed with Late Stage Lyme Disease of the Central Nervous System in 2002. I spent 3 years on various Antibiotic cocktails with no improvement and was told by my LLMD Neurologist that there was no cure for me. I went off Antibiotics for 4 years.....Then I went back on them for 1 year hanging on to hope that my doctor was wrong and I could be cured. I realized,after wasting thousands of dollars chasing the dream, that what my LLMD Neurologist told me years before was true.....there is no cure for me....just giving you the honest truth for my situation.....
Posts: 59 | From NH, USA | Registered: Oct 2004
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Have you also tested/treated co-infections? Have you done IV?
I am really depressed now.......
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Camp Other
Unregistered
posted
sixgoofykids,
Each successive bite does seem to make matters worse. I'm sorry you were mostly housebound, but I'm glad to hear you have been doing well for a year and a half - could use more success stories like yours.
Robert,
There's been a lot of speculation as to whether a Lyme infection is permanent or not. I don't know whether Lyme is a permanent problem or not - I think that it can be, but it doesn't have to cause problems. Not everyone gets shingles, and if it is permanent, maybe we'll find a way for it not to damage our bodies over time.
As it stands, I've found people online who I've conversed with who claim to be symptom-free for a few years up through at least a decade so far. They got their lives back, so I have to believe it's at least possible to get well enough to resume the life one had before Lyme and coinfections.
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'Sure hope that I can become a part of that symptom-free group one day soon!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Thanks for a positive post, Camp. That's the way I think about it, too. To me it's not too important to be pathogen free - who is? I just want things under control so I can go on with my life. I do believe that is possible.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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