For those of you who have had this disease for years and are suffering from some of the most severe symptoms, what kind of improvement have you made? Are our bodies simply beyond repair. I've been able to keep things from getting worse, but some of the problems with my body seem too advanced. The disease has affected virtually every inch of my body, and I'm wondering if that damage can ever be repaired.
Have any of you shown improvement in your long term problems?
Posted by LYMESCIENCE (Member # 9259) on :
Yes, and I had the worst kind, Lyme encephalamylites, though of course there are verying degrees of severity within Lyme encephamylitits. I had multiple lessions on MRI, as well as moderate-minor hypo perfusion on my PET scan.
I completely agree with your perspective. It does seem like these problems can't be overcome, especially in the moment, but they can, its just that its incredibly difficult.
Trust me, you can improve measurably, even from these kinda symptoms. I lost the sence of smell, color, severe reduction in hearing, severe reduction in taste, seizures, parkinson like tremors, severe depression, trouble swallowing(muslces wouldn't move), several cranial nerve palsies, including classical Bells, and the list goes on. They even found B.B. in a specimen from my colon in what was a colitis like formation, I can tell you it shocked the hell out of the DUCK gastroenterist when he performed the PCR on the specimen (it had not been on his list of tests to perform).
So, it takes a long damned time for this kind of severe Lyme, but yeah, you can make improvement, and possibly live a normal life, though you may occationally have some symptoms.
It seems that the only people who seem to recover 100 percent from Chronic Lyme (in its Severe variety with clear Signs as well as symptoms) are those who are younger, but even those who are not younger still seem to be able to get back to 90 percent or better if they work hard enough at this disease.
This disease takes the kind of gut renching determination that one would would expect it takes future pro athletes as they come to practice 2 hours early, and leave 2 hours late.
This is the kind of enemey that will have no mercy, so, you can never let that leave your mind, becauase the minute you start to give up fighting, it doesn't mean that Borrelia will do the same, trust me, it won't.
Posted by heiwalove (Member # 6467) on :
yes - i couldn't think at all, i was almost completely immobilized; i was so sick i was certain i would die. for how desperately ill i was, i think the speed and quality of my recovery is a bit unusual.. but maybe it will give you hope! a year and a half after being bedbound, i am in near-full remission (knock on wood) and am currently looking for fulltime work.
please don't give up - there's always hope!!!
best, heather Posted by minimonkey (Member # 8693) on :
I've gotten remarkably better in a short time, too -- I've had lyme since *at least* 1988, likely since birth. I had severe pain, lots of neuro stuff, a period of psychiatric stuff -- you name it! So, add me to the voices who know that even chronic lyme can respond to treatment. I'm being treated for babs, too, and that has really helped.
Posted by frenchie (Member # 7994) on :
It's good to hear some positive results. I'm only in my early twenties and can't imagine a life like this, so that makes me feel better. What kind of treatment have you gone through to get such amazing results. I think you could give me the best advice since you had to treat the most severe symptoms. I've been in school which makes it difficult to aggressively treat the disease but I think it's to the point where I can't do that anymore.
Congratulations to all of you on your recovery!
Posted by Catsmeow (Member # 9485) on :
Frenchie, I'm a newbie here myself and just learning but one thing everyone's been telling me over and over is GET A LLMD!
I did. I have an appointment. I'm having blood drawn to be sent to IGenex labs for further testing...
I'm told NOT to fool around with average docs who don't know Lyme...drive however long it takes but get a Lyme specialists..PERIOD.
So, I heard the wisdom spoken here and I am doing just that. Posted by TheCrimeOfLyme (Member # 4019) on :
Yes, I was severe impaired and am now driving, working and playing with my kids again. My herxes are now mild and I have 90 percent of my life back on days that lyme doesnt show off to me.
Are you seeing a LLMD?
Posted by Andie333 (Member # 7370) on :
Frenchie,
Like others, this disease affected me in a multi-systemic way. I could barely walk from the Lyme arthritis in both my right hip and my right knee. In the worst of it, my knee was swollen to the size of my thigh.
At one point, I experienced full-body paralysis, twice. I had seizire-like activity, facial paralysis, a tight-banding feeling in my legs and arms. My senses were disorted, making sounds and smells magnified a lot.
I became spatially disoriented, unable to find my way home at one point. I was stuttering and gasping for breath. So exhausted it made walking across a room a challenge.
That devestation was about 9 years after the tick bite. I've now been on abx for a year. When I started treatment, I would have said I was at about 18% of capacity; now I'm at 60 to 79%. That's not normal, but I'm so much better...so much better.
I agree with cats about getting a good LLMD; that's vital. Also, make sure they test for co-infections both via labs and clinically. To me, that was the key to better health.
Also get a lot of rest. Try and listen to your body, and if it's possible, let your body tell you what it needs.
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