posted
Hi, I spoke with Dr. P and Dr. M, both saying to be that it is not true that every LD patient cannot excercise aerobically. So, each person should research this with their LD MD.
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi,
I agree it's individual. If I recall from the Dr. B. guidelines, it did not advise aerobic exercise until stamina improved. But fatigue/stamina is not an issue for every Lyme patient.
For me, my exercise ability varies greatly depending upon pain levels and medication side effects, so my ability to exercise is really unpredictable.
One thing I learned when I had chronic fatigue syndrome many years ago, you have to really assess your body's ability to exercise on any given day and change accordingly, otherwise it can lead to a big-time relapse.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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LostCityAgent
Unregistered
posted
Hi, Well see my situation is confusing. I had been walking a mile to 6 miles daily. Went to jogging and did this before bed. One morning, out of no where I woke up numb from the waist down. This went on for a month, then it went away. Naturally then this had come I stopped working out. After it went I started running even harder and faster. Within 2 days of that I not only had the same symptom come back but it was worse. I had slight gait, weakness, felt like a tank climbing the stairs, and a loose goose going down them. If I tried to run my legs were like psychotic chop sticks. I HAVE NEVER BEEN THE SAME ! The numbness finally went, and over a few months so did the other symptoms (but I have never again been 100%). So naturally, I am terrified of working out. But, I have a severe weight problem. I am scared. This all happened last Winter (2005) when I was 26. After that Spring when the severe symptoms were gone during that summer I met knew symptoms. But not following like a traditional MS sequence, more like waxing and waning. I find them also to mostly be postural and aggravated. So, I met a new friend called Lhermitte's sign (which is atypical), hand numbness, internal vibration, buzzing patches, twitches/fasiculations, worse spams (but have had them since age 10), et al. The most annoying being parethesias of the hands.
Dx in the spring was Acute Transverse Myelitis but later on found no TM in the spine. Feb 2006, brain MRI shows multiple lesions in both cerebral hemispheres and in the corpus callosum. And yes, they are periventricular. So they are Lesions suspicious for MS. But the report said that we needed clinical correlation because LD could cause the same findings.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
John,
I know what you mean when you say you don't feel your age. I was 29 when I was diagnosed, and I definitely didn't feel that young. But after a couple years of treatment, I feel younger than 31. My yoga teacher just commented how well I did in class tonight. So treatment can help.
I think Babesia might make aerobic exericise harder. Before I treated babesia, I would get vertigo and ligtheaded with aerobic exercise. I never went to back to straight cardio, but I can do much more intense yoga now.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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LostCityAgent
Unregistered
posted
Hi, Well as far as I know I have LD. Not CDC LD, but Igenex LD. 1 or 2 bands. I know nothing of babesia. I am fat and that is not helping. It is so sad. I am trying hard. But you see, I have the MS version of all this. If I went to a neurologist he would diagnose MS hands down. Brain lesions and spine lesions. So, this is so difficult. I just find it hard, you know?
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again, John,
I totally relate. You and I have many of the same symptoms. My LD is very much like MS - that's what the original suspected diagnosis was. But I do remember getting a bite and a rash - just didn't realize it was a tick and a weird Lyme rash at the time, but that was how I was able to put the pieces of the puzzle together and finally get diagnosed.
I'm older than you, but I became horribly ill from chronic fatigue syndrome when I was 30 and had it for years. Many people think CFS is really Lyme, and who knows, maybe I had Lyme then and was rebitten, but I think the CFS was due to an environmental exposure.
But exercise always made me relapse. Of course, on the days I would feel a little better, I would try to make up for lost time and go back to the gym and workout, then would have a two-week relapse. And I used to have terrible lighteheadness, etc. which made it hard to exercise.
Now as a Lyme patient, it is all the pain and some weird stuff (like you say, internal vibrations) that make it hard to do more than just a slow, short walk each day.
By the way, are your symptoms fairly symmetrical or more one-sided? It sounds like yours are just about everywhere. Mine are almost completely symmetrical which made my LLMD wonder if it was really Lyme at first. A lot of Lyme patients are one-sided. But of course, we each have our own unique set of symptoms.
I have no words of wisdom except to say that thank goodness we know that we are not alone in what we are going through. At least the Internet can help us connect.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
John,
Excuse me. I have to ROFL.
As in "roll on floor laughing."
I am unable to read the term " legs like psychotic chopsticks" without laughing.
OK... I'm OK now.
Now. What does this mean, you "know nothing of babesia?" Huh? Have you done co-infection testing?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
Unregistered
posted
I TOO AM LAUGHING, OUT LOUD AND NO ONE IS HOME!
Thanks Michelle for pointing that out. I am serious laughing that I have tears. Wow!
Anyway. Know nothing of Babs. Not been tested for it, I do not think.
Uhm, yeah most of my symptoms are symet but not all.
My reading suggested that MS people are more likely to have lateral (one sided) symptoms as opposed to Lymies?
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hey John,
I did not mean to worry you about the one-sided versus symmetrical symptoms. I am almost completely symmetrical and I definitely have Lyme and coinfections.
Another way to look at the MS versus Lyme confusion is to see whether you either improve or herx on antibiotics. If so, it's bacterial.
The fact that I started improving so quickly on my first antibiotic was very confirming according to my LLMD that it's Lyme. Plus I had the positive tests and all the clinical symptoms.
But again, I think my LLMD tends to see more one-sided than symmetrical patients, but with me, he said it never fails to amaze him how differently this disease manifests in each person.
By the way, in terms of exercise, I'm thinking about getting an exercise videotape that is for people who need to exercise while sitting down in a chair. I have a catalog called Collage Videos. I've ordered exercise videos from them before. They also have a website. They even have special videos for people with MS and other illnesses.
Money is tight right now so I'm holding off, but if I get one of these videos and it is something I can do when I'm unable to walk much, I'll let you know.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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LostCityAgent
Unregistered
posted
Hey, I feel to be improving. But, no true herxes I can recognize.
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A couple things. Exercise initially lowers the immune system. Once the body adapts, it boosts the immune system. That's a reason it can be very hard to start.
The other is that I know somebody who has created a new form of exercise for people in pain and with other limitations. It is based on his work with Feldenkrais.
The exercise is called FlexAware. I'm not sure if he has made any videos or trained people outside of the DC area, but here is his website: http://www.outgrowingpain.com/
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I started exercising in mid February. As often as I can, I walk up to 4 miles a day. I usually manage to do it 3-5 days per week. I was convinced this would help force the Lyme out of my body...well, my body looks a bit better but it definitely has not helped with the Lyme. I don't think it has hurt either, and I am hoping that all around I am healthier. I just wished I could force it out by forcing myself to work out!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Lost, I was like you. I used to run 6-8 miles a week then suddenly the more I tried to do, the weaker I got to the point that my entire body woke up numb one morning, and I couldn't move.
After that I was so weak that I couldn't even go downstairs to get the mail, and the slightest amount of exertion made me fall asleep for a couple of hours.
That was last August. I've been on double abx since then, with slow progress. When I first felt well enough to go to the gym, I could only go for about 10-15 minutes at the slowest rate the elliptical machine would go without shutting down. And afterwards, I was wiped out for close to a week before I could do any kind of exercise again.
Gradually the length of time I'd be wiped out got shorter and shorter. At the beginning of May, I had an abx change and my progress speeded up some.
Now I'm up to an hour on the elliptical machine. My speed ranges from 3-5 mph, but mostly 3-4 mph, and I'm at level 2 of intensity. I think I can do this 2-3 times a week, so I've really improved a lot, and I'm thrilled as you can imagine. I'm now hoping to get to the point where I can start losing some weight.
My message is that although it takes time, you cna get there. I may not have been ill as long as you were initially, so maybe I'm getting well sooner, I don't really know. I didn't have brain or spinal cord lesions, although I did start getting MS like symptoms, plus numb hands (still get this once in a while), twitching, tremors, jerking, stabbing pains, etc.
Now, I agree w/Aniek. At least that's how I feel...that initially, exercise made me feel worse. Now I've reached the point where exercise is making me feel better.
I remember telling my LLNP that I couldn't believe Dr. B's guidelines that recommended exercising one hour ever other day (or something like that). At that time I could barely walk 1/4 mile at a very slow pace. I'm so grateful to be where I now am. And I hope all of you will get there too.
I'm still not completely well, but I'm a lot more optimistic about the future than I used to be.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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