posted
This probably would have been better suited for the "success stories" page, but I didn't think anyone would see it.
Things have changed A LOT in LD treatment over the last 4 or 5 years, so, this might now be a more regular treatment regimen, but for those of you that can't seem to get through that one roadblock, or you hit a plateau....I figured I'd give you a brief on what helped me. My story in short:
Dr. J. believes I was born with LD, but got reinfected with about 5 other infections at age 6. By age 14, my mom was pulling her hair out trying to keep me alive, and every specific specialist was working on every specific area...neurologists for seizures and migraines, cardiologists for congestive heart failure, orthopedists, pulmonologists, you get the idea.
We were really darn lucky to find out that what I had was LD+coinfections...when I was 14. I have been on nasty combinations of IV's & oral abx, antivirals, and pain medicine since then. That was the hardest thing to go through...I threw up for several months on IV Clinda....my hair was falling out from all the chemicals.
After two years I seemed to start making some evident progress (we knew right away that the abx were changing things...but...it took a lot longer for the changes to be good ones).
Another year later I hit a plateau...Burrascano's guidelines suggested PT so we found a therapist willing to follow the guidelines and go very very slow with me. After 6 months of PT I started rock climbing... I was 17 now, and I joined a youth rock climbing team where I could get instruction and stuff. It was amazing. After beginning to climb, my pain and symptoms really started getting better.
A couple months into climbing, my insurance company cut me off. My parents sold everything to keep me on IV's, but I couldn't watch them do that, so I opted to quit treatment. I spent 4 months untreated before I realized how quickly I was relapsing. Two months later I agreed to start the therapy again. I never got back to that pain-free energetic point that I was at....but after another 6 years of IV combos and treatment, I am finally mostly well. Dr. J said I might have recovered fully if I hadn't had that relapse, if I had stayed on treatment. But it gave my family some time to focus on them and not just medical madness. I would do it the same way again.
so, I wanted to suggest for anyone interested, if you're able ...you might try PT. Some doctors suggested I cut out wheat/corn/dairy from my diet too, but I lost weight way too easy...and rice products are so high in carbs I couldn't do that on that much abx. I did focus on eating as healthy and natural as possible, and even more on EATING. If nothing sounds good but mcdonalds or fried chicken---eat it. Your body is going through so much and it can't heal without calories for energy.
Anways, good luck with everything! Everyone here is in my prayers
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Glad you are doing well now, after that horrific story.
Thanks for sharing it.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Congrats on your amazing recovery. How inspiring. One doesn't hear things like this here much.
On another note, I can't even imagine the total cost of IV treatment for 6+ years. That scares me so I'll forget about it. There's no price on health for sure, but that must've been one hefty tag. it's nice to hear a happy ending for once when someone takes it all the way. It's so sad all the way means broke forever and $500k+ in debt probably if insurance doesn't cover. It seems like Lyme patients never can have their cake and eat it too.
If you remember your insurer, let me know. I need to sign up there. Were you CDC positive? I imagine so with those serious symptoms.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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And here I was thinking it was some fancy-schamncy crazy medical term. Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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bettyg
Unregistered
posted
lishka, thank you for posting your very touching story how your folks gave up everything to treat your lyme and many co-infections!
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One doesn't hear things like this here much. ![[Frown]](frown.gif)
There's no price on health for sure, but that must've been one hefty tag. it's nice to hear a happy ending for once when someone takes it all the way. It's so sad all the way means broke forever and $500k+ in debt probably if insurance doesn't cover. It seems like Lyme patients never can have their cake and eat it too. ![[bonk]](graemlins/bonk.gif)
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