I was on oral abx for a few months last year and was in great shape (remission).
stopped abx too early and relapsed last Oct. and went back to oral abx and then switched to IV abx (rocephin + zithromax, and some levaquin in between).
stayed on IV for 3 months and continued to get worse. so stopped IV abx and tried oral Mepron + zithromax, GI got out of whack! Changed to oral setpra + zithromax + pluse flagyl for about a month, and then stopped all abx due to yeast and GI symptoms.
Now I look at my rash photos and think of my main symptoms, bartonella is the biggest culprit right now: scratch rashes (disappear in 2~3 days) and atypical rashes (some have stayed for about 8 months), low grade fever, night sweats, bad sleep, slow brain (I used to be sharp)...
My body needs a break from all the drugs which helped at first but stopped working.
I restarted going back to gym this Monday. Did 60min walk (2+ miles/hour) on treadmill the first day, felt OK the next morning; and then did 60min workout (treadmill + elliptical+ bycycle) Tuesday, and felt OK too today.
I'm watching how my body reacts. But if I can workout (even slowly) 1hour a day, how sick can I be?
Yes, I'm mainly bothered by the fact that I can't think clearly and feel fully intelligent.
Not sure what my point is here, maybe some positive thought for today?
Right now I'm using rife machine for lyme and yeast, and waiting for Dr. Zhang's HH capisule for bartonella. Will continue with excercise, some supplements, and some herbs, and flagyl now and then (flagyl had no impact on me, though).
How I wish our immue system can beat bartonella!!
Posted by lymebytes (Member # 11830) on :
I heard of a study (I cannot find - and wish I had saved) that someone with Lyme did not take abx and only exercised regularly and got well.
Lyme cannot live with heat or oxygen..that simple and both are produced by excercise.
Burrascano said without an excercise program we will NOT get well...that clear, that simple.
I absolutely believe exercising at your comfortable level (my LLMD says to be shaky after a workout is ok, but not shaky and sick feeling, then you have gone too far) you can get well and stay well.
I know 2 other examples - one girl a runner ran everyday during LD treatment and was "cured" in 8 months.
Another girl, 5 years at the gym kept her healthy as soon as she stopped, she relapsed she said.
Yes, exercise is more important that antibiotics (again according to Burrascano).
At the risk of sounding redundant in my quotes, Burrascano also said, "That before we were aware of co-infections we treated and treated LD and people got well" the assumption once the spirochete load was reduced the immune system DID in fact take care of and rid the body of co-infections.
My LLMD agrees totally.
My son has had Lyme - he is very religious about excercise and eating right, never missing a day. He is gaining ground and beating this in leaps and bounds. He will be well without a doubt.
Take care and great you are feeling better!
Posted by justag (Member # 11145) on :
lymebytes, you made my day. thx!!!
ok, I won't visit lymenet today
Posted by gemofnj (Member # 15551) on :
I can't agree more.
I force myself to walk/jog if possible even though it really hurts.
I thought it was my imagination but the next day I actually feel much better! It's great therapy!
Thumbs up to Dr. B. He is the God of Lyme!
Posted by lymeinhell (Member # 4622) on :
The fuzzy brain could be just yeast.
Have you tried Diflucan or Nystatin? Especially since you mention the gi issues..
Posted by Peacesoul (Member # 13709) on :
I got sick 14 yrs ago. I had no clue why I was sick, I was told I had CFS, Lupus etc.
I felt I just needed to change my diet and exercise. I was overweight and lazy I changed my entire diet and worked out with heavy weights 6 days a week for the first two years. Within the first 4 months of working out, I got well and not to mention, buff. I had a few bad days a month, but I was still able to function.
Now it's 9 yrs later and I worked out until last Nov when I started lyme treatment (I was dx with lyme last Aug). On treatment, I was useless. I could barely go out and get food. I had to stop work for a while and maybe got to the gym 3 times in 3 months.
Now I'm back on pulsing some cipro and again feel like cr*p. but I did manage to work out last night for an hour.
I TRULY TRULY believe exercise is a key to getting well. It made me close to 90%`better in my past and as soon as I slowed down and stopped, I got worse.
Now I don't know if bacteria can be killed with exercise alone, but it does add to boosting the immune system. I also think exercise changes the horribly negative attitude of ill people which also helps with healing. All the amazing brain chemicals that are released when exercising can't even compare to the horrible anti anxiety and AD drugs drugs were are often taking.
There is no doubt exercise needs to be part of this illness as much as abx and a clean diet.
Posted by Marz (Member # 3446) on :
I remember reading somewhere that if a person felt better after aerobic exercise it was because the oxygen was killing the bacteria (borellia).
This was supposed to be as opposed to feeling worse after exercise in which case (and I'm not sure I'm remembering this right) it was more likely there was a co-existing infection that was non-bacterial like EBV.
At the beginning, exercise was great for me, now it sets me back.
Anyone else hear this?
Posted by lou4656 (Member # 10300) on :
Justag -- There is a thread in General Support . . . Hikers/Walkers/Movers. It is for anyone who wants to incorporate exercise in their lyme treatment.
We encourage and support each other regarding exercise. Some of us are barely moving and others are walking miles every day. I have also recently added strength training, which I believe is making me stronger.
You are welcome to join us . . . and anyone else, for that matter, that would like encouragement with their exercise goals.
Posted by justag (Member # 11145) on :
thank you all for replies.
I felt lazy today, but still did 60min walking on treadmill (2~3 miles/hour).
Four days of 1hour workout in a roll, not too bad
Exercise definitely helps my mood!
Posted by Keebler (Member # 12673) on :
It's so good to hear you are ready to feel the wind on your face again, so to speak.
Exercise can be great - however, in some cases, say, if someone has a virus (or other active infection), hard exercise can damage the heart and even be fatal.
It's best not to avoid movement, either as there are wonderful benefits to it. However, if one feels fluish - don't push. Listen to what your body needs.
Graded exercise and rest days in between can be very helpful, too.
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. 
(See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle - excerpt: ``when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts.
We all know that to play squash with the flu can lead to heart attacks. Much the same danger can be courted by undertaking hard exercise with M.E. (CFS).''
- full article at link.
And, there are some patients with exercise intolerance due to many complicating issues. For anyone with such and feeling bad about that, there are some things that can help - with safety being the first key. Much is being learned about ATP and cardiac matters. This article explains a lot for those dealing with this:
ILADS - DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES
JOSEPH J. BURRASCANO JR., M.D. - Fourteenth Edition - November, 2002
. . . Do not try any aerobics until your Lyme is no longer active, and your physician okays it.
. . . Exercise no more than every other day.
. . . A surprising thing happened which none of us expected-when Lyme patients went further with their rehab, to include a whole-body conditioning program, the lyme seemed to go away!
(note: the whole body conditioning program is not the same as aerobic exercise.)
EXERCISE AS A FORM OF THERAPY FOR LYME DISEASE
I encourage all Lyme patients to go through a formal rehabilitation program.
Generally, this involves progressing from simple physical therapy modalities, then to stetching and mobility training, and finally to formal strengthening exercices supervised either by the physical therapist, or by a qualified, credentialed exercise coach.
A surprising thing happened which none of us expected-when Lyme patients went further with their rehab, to include a whole-body conditioning program, the lyme seemed to go away!
I have seen this occur repeatedly, including in some patients who did not even go on antiobiotics!
Although the scientific basis for this is not known, there are several reasonable theories. It is known that the Lyme spirochete,Borrelia burgdorferi, will die if exposed to all but the tiniest oxygen concentrations.
If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive.
Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination, that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective.
In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function in the immune system, an obvious potential benefit in an illness like Lyme that is known to weaken immune resonses.
As you progress through rehab, you must make it your goal to participate in a one hour aggressive exercise class every other day(at least three times per week).
BUT- you must be patient! It takes at least six weeks of regular physical therapy to be able to join a light conditioning and stretching program, and six more weeks are usually needed before heavier exercises can begin.
Finally, only after several weeks of this level of physical training will you be able to say that you have made a major dent in your illness. Please note that the program consists of condititioning and strengthening, and not aerobics.
Because high body temperatures may play a role in this phenomenon, I advise against using swimming as the choosen exercise.
A few final few words of caution: do not jump into an aggressive program until you are ready for it and your physical therapist agrees. Do not try any aerobics until you are ready for it and your physical therapist agrees.
Do not try any aerobics until your Lyme is no longer active, and your physician okays it.
You may need a cardiac stress test first to ensure safety. And finally, please join a program run by a trained professional with proper credentials.
Best wishes working out your Lyme!
Physical therapy (if needed):
1. Relieve pain and muscle spasms utilizing multiple modalities as available and as indicated: massage, heat, ultrasound,TENS, "micro amp", etc
2. Increase mobility while protecting damaged and weakened joints, tendons, and ligaments, to increase range of motion and relieve stiffness.
3. The role of physical therapy is to prepare for the required, preferably gymbased, exercise program outlined below.
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 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 onto the next muscle group.
3. A careful interview should be performed at the start of each session to make apparent 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 your stamina improves.
2. Conditioning: Follow a "Body Sculpting" program-This consists of light calisthenics and weight lifting, using very low resistance(small weights) and many repetitions., and must involve the whole-body. This can be accomplished in exercise classes, 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 than every other day. You may need to start by exercise every 4th or 5th day initially, and as your abilities improve, work out more often, but NEVER two days in a row. The days you do not exercise should be spent resting.
5. This whole-body program is required to achieve wellness.
Simply placing the patient on a treadmill or an exercise bike is not acceptable (except briefly as a warm-up), nor is a simple walking program.
exercises definitely help my mood, so I'll keep doing it (key: slow, but 60min at least, and sweat). I don't have much joint involvement, but the main symptoms are focused on my brain (foggy and constantly feel like needles are trying to burst out of my scalp).
when drugs don't seem to help, the only thing I can control is my immune system buildup.