I don't recall explicitly discussing this with my LLMD, but I know I mentioned to him in my history at our first visit and again during our recent phone consult that I do work out.
I was very sedentary before last spring. By then, I was getting sick enough to become very concerned, but I was making little progress with doctors. So I did a mini-lifestyle overhaul: quit smoking, quit drinking, changed my diet a lot, and started to exercise.
I usually do aerobic exercise. Unless I am having a very bad day symptom-wise, I usually feel much better afterward.
I do have days/stretches where I can't exercise due to symptoms.
My energy level has been unpredictable, but is often poor. As I've written in other posts, I have been unable to lose more weight for the last few months, and am struggling to not regain. My TSH level has been increasing every time it is measured, but my LLMD doesn't think I should try to address that separately, yet. I'd be very concerned for myself that I'd gain a lot of weight if I stopped my workouts.
It may all depend on how sick you are, how long you've been sick, and which doctor you see. I'll be sure to directly ask about this at my next appt. in a couple of weeks!
Since they can't even come up with a good test to detect Lyme, I seriously doubt there is any proof of the Dr.'s comment. Presumably it is a comment made based on anecdotal evidence of Lyme's patients feeling worse off after exercise. However, I still haven't heard any reference to that either in Lyme. Typically, this comment is made with regards to CFS -- although I suppose they may be related. In that case, post-exertional effects evidently can be severe.
FWIW, in my case, exercise is difficult because of the associated pain/numbness that occurs while doing the exercise. But I do it anyway because I feel there are the usual benefits to exercise that need to be maintained for good health.
Fortunately there is a spinal fluid test that apparently can diagnose CFS (google Red Labs USA for more info) and there is supposed to be a blood test that can make the diagnosis.... available in another year or so.
There are so many things that lyme patients and CFS patients have in common. I'm actually on a treatment that treats lyme disease (although I have CFS). Two-thirds of CFS patients have mycoplasma (L-form) bacteria infections.
The Dr. that is treating me has actually battled Lyme himself ad wll as his daughters and his wife. So he may be basing some of it on his experience but he said it was CDC guidelines.
I found this while searching.....This is from the treatment plan by JOSEPH J. BURRASCANO JR., M.D.
President, East End Medical Associates, P.C.
East Hampton, New York
International Lyme and Associated
LYME REHAB-PHYSICAL THERAPY PRESCRIPTION
Please enroll this patient in a program of therapy to rehabilitate him/her from the effects of chronic tick-borne diseases. If necessary, begin with classic physical therapy, then progress when appropriate to a whole body conditioning program.
THERAPEUTIC GOALS (to be achieved in order as the patient's ability allows):
PHYSICAL THERAPY (if needed):
1. The role of physical therapy here is to prepare the patient for the required, preferably gym-based exercise program outlined below.
2. Relieve pain and muscle spasms utilizing multiple modalities as available and as indicated: massage, heat, ultrasound, and passive and active range of motion. DO NOT use ice or electrical stim unless specifically ordered by our office. Paraffin baths can be quite useful.
3. Increase mobility, tone and strength while protecting damaged and weakened joints, tendons, and ligaments, and teach these techniques to the patient. Use light weights/minimal resistance but a lot of repetitions in any exercises prescribed. Aerobics are not permitted. Transition the patient slowly to the gym-based program outlined below.
4. Please see the patient two days per week- but do not schedule two days in a row!
EXERCISE Begin with a private trainer for careful direction and education.
PATIENT EDUCATION AND MANAGEMENT (to be done during the initial one-on-one sessions and reinforced at all visits thereafter):
1. Instruct patients on correct exercise technique, including proper warm-up, breathing, joint protection, proper body positioning during the exercise, and how to cool-down and stretch afterwards.
2. Please work one muscle group at a time and perform extensive and extended stretching to each muscle group immediately after each one is exercised, before moving on to the next muscle group.
3. A careful interview should be performed at the start of each session to make apparent the effects, both good and bad, from the prior visit's therapy, and adjust therapy accordingly.
1. Aerobic exercises are NOT allowed, not even low impact variety, until stamina improves.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and weight lifting, using small weights and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved with exercise machines, or carefully with free weights.
3. Each session should last one hour. If the patient is unable to continue for the whole hour, then modify the program to decrease the intensity to allow him/her to do so.
4. Exercise no more often than every other day. The patient may need to start by exercising every 4th or 5th day initially, and as abilities improve, work out more often, but NEVER two days in a row. The non-exercise days should be spent resting.
5. This whole-body conditioning program is what is required to achieve wellness. Simply placing the patient on a treadmill or an exercise bike is not acceptable (except briefly, as part of a warm-up), nor is a simple walking program.
MANAGING LYME DISEASE, 15th edition, September, 2005
Good post EricaO. I do what I can as far as exercise. It hurts. The more I do the more it hurts. It's not the same as just sore muscles. It's much worse and I'm very stiff later. I still exercise 4 times a week though despite the pain. I was an avid exerciser prior to this.
I guess I am different. Except on my worst days, exercise usually makes me feel better. I know my joint issues, which are bilateral and worse upon wakening, always feel better after I workout. It is tough to get started, but I can usually tell within 10 minutes or so if I am doing well or not with it. Some days, I do opt to quit.
The rheumatologist I saw before my Lyme diagnosis could tell that my joints were swollen, and she told me it was very important given my size (I'm obese) that I continue to exercise and try to lose more weight. She also said that with inflammation, exercise should help. So between that advice, along with no directions to stop from my Lyme doc, I think I am ok.
I am going to attempt to go to the gym every other day this week and do "light" treadmill or elliptical. I am really struggling with the "no workouts" because during the treatment in July (abx doxy 100mg bid) I was working out daily. I felt great and looked great. I always thought it was odd though because after 35 mins of HARDCORE sweat your guys out elliptical I would have a numb right foot and I would feel like I was going to black out.
I obviously don't have the endurance that I did in July because I was very weak for several months but I am feeling much better and I want to build up my endurance and build my muscle back and get to toning again.
Has anyone else been told to avoid FLOUR at all costs??? I am starting to question my Drs. ability to treat me and I may be heading up North for a Dr that handles Lyme every other patient!!!!
I'm very much into nutrition and I can say from all my nutrition research, I think flour is bad. Especially white, refined flour. It's bad for the glycemic index etc....I haven't read anything good about it anywhere. I have read that whole grain is better.
While my Lyme doc did not give me as stern a warning, I've read elsewhere that Lymies should avoid flour/sugar to help prevent yeast overgrowth that can happen in the body when on antibiotics for extended periods.
I'm not even on probiotics right now, though I do plan to get some today as I start a 2nd antibiotic tonight, and have been on the 1st for about a month now.
So I'm guessing that is why your doctor warned you about flour. Perhaps he foresees the need to keep you on the antibiotics for very long and is concerned about yeast?
If you're unsure about his treatment, you should ask him to clarify. Mine allows me to exercise and eat flour, but maybe only because I'm not as sick as other patients? (While I feel pretty lousy, I know on the relative scale I am fortunate!)
If you are unhappy and able, I don't think a 2nd opinion is necessarily a bad idea, though. I went to more than one neurologist while trying to figure out what was wrong with me.
(Oh, and I do agree with patsy10 and I do avoid white flour and rice as much as possible!)
My recollection of what I've read (through the brain fog and lousy memory) is that Lyme bugs hate heat, so steambaths/saunas can be beneficial by raising the body temp and frying the little buggers. The theory behind native American sweat houses is the same.
My body temp is chronically low, which may be tied to thryoid suppression, which may in turn be tied to Lyme .... so heat would seem to be a good thing. I find a hot shower in the morning really helps esp when I'm Herxing.