posted
It has been a while since I posted here. I will say that I got great support from you all and good suggestions on doctors and what to look for. Lucky for me, being in a heavy Lyme county, there are multiple LL docs to go to and have a been able to find a good one. It is a breath of fresh air dealing with such a caring doc.
My question is that I have been working this for 6 months now and have made great gains from where I was, which was stuck on the couch, aches, headaches, not working... to being able to work, think, and survive intense business trips. I was impacted by lyme unchecked for at least 6mo prior to starting treatments.
I use to be an avid cyclist that rode 20-50 miles at a whack, ran some, and did other active life things. However, now, I really just do not have that kind of ability. I soo miss riding, weekends are more like recovery from work, and many activities are just avoided.
Most of what is reported or posted is the probably the more fringe (I hope) cases of not returning to the old normal, if even seemingly to get to 60-70% of normal.
While I am tracking well from treatments, I really am probably 40% stamina. My question is there really any hope to getting to pre-lyme energy and capabilities? Even 90% would be a good target.
Your experiences? B
Posts: 31 | From VA | Registered: Jan 2016
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I am in the same boat as you are - I used to run half-marathons and so want to go back to running and working out hard
when I try 2-3 miles, my hip joints hurt for days - not muscles - very sad
I don't know if and when I will have this thing in full remission and what that will look like
I still have dreams for my life that involve strenuous activity - which I love
I can imagine, that once I get over the infections (mine are still active and by the way I have gone 14 years undiagnosed and untreated)
my body will need to be rebuilt - like Gelatin, silicone, minerals, glucosamine sulfate for cartilage rebuilding - adrenal recovery - gut recovery - immune recovery, etc etc etc
then, maybe, start to build slowly - like TF said with workouts with weights - working yourself up to 1 hour (TF says do it with therapy or you will not get well - Dr. B's idea) with heavier and heavier weights
then maybe aerobics again?
I have this firm believe that the body can do anything given a chance - meaning given the opportunity to heal and build strength (in any area) slowly
what can you do today? right?
build from there
I am 20 years older now then before Lyme and it is probably not reasonable for me to expect the same level as I had 20 years ago from my body - but who knows?
maybe eating better and being more aware actually will make me more fit than ever
I hear from people who are in complete remission that they can still feel dampened if they overdo it and the immune system slips
so maybe one needs to work up very slowly to stamina and strength and not jump around like before Lyme and in younger days?
sorry about the rambling - I am thinking about this, too
hope some remission heroes can answer for us
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 632 | From USA | Registered: Jun 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You weren't sick with lyme for very long, so IF you get rid of lyme and all coinfections, you should have the same life you had before lyme disease.
I had lyme undiagnosed for at least 10 years before I was finally tested and diagnosed. Still, I got my life back and my brain back the same as before I got lyme.
But, for that to happen, you have to do everything Burrascano says to do. That means you have to do the one continuous hour of weightlifting every other day--a full body workout each time. That is how I overcame the extreme muscle weakness that lyme gave me. And, I got back all of my endurance. When I stopped all meds over 10 years ago, I never relapsed. I am still cured and symptom-free.
Those who don't do this required weightlifting are not strengthening their immune system. So, according to Burrascano, they often relapse when treatment ends. And, eventually, they have to retreat.
I hope you read carefully what Burrascano says about this and follow his requirements. At my first appointment with the lyme doc who cured me, he told me straight out that I would NEVER get well if I didn't do the weightlifting.
And, I could not stand for more than a minute (leg muscles too weak), hold the phone to my head for more than 30 seconds (arm muscles too weak), or hold my mouth open to have my teeth cleaned (jaw muscles too weak).
That is how weak all my muscles were from lyme. My muscles were attacked neurologically by the disease. I dreaded having to rise up from a chair or step up a curb. It took all the energy I had.
As I worked up to the one continuous hour, it was amazing to me that my stamina was improving. It was truly unbelievable.
Burrascano is more than just antibiotics. Do all the 4 prongs of his protocol and get your life back: antibiotics, supplements, diet, and weightlifting
And, once you recover, come back on LymeNet and tell everybody how you did it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I'm just starting out my journey and struggling to even take the antibiotics.
I'm learning and starting to figure out what I need.
I've read Dr. B's protocol and I think it is a good plan. I just need to get started. Thank you for the needed hope today.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I am with harmony ,i feel like so much damage has been done ...it hurts to live and walk much less be active ..a year ago i was a human
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
TF, so how did you start out lifting weights if you were so weak? Lift a tin can?
1 minute once a day and build up or did you do 1 minute several times a day on the 'exercise' day?
Did the weight lifting totally wipe you out for the rest of the day at first? How long till you could tell it was making a difference?
I'm trying to figure out how to get my hubby started with weight lifting, without overdoing it. He says he thinks he ought to do some kind of exercise but it seems he needs a whole day or more, to recover and can't get his work done.
Posts: 2618 | From USA | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I did the weightlifting in the evening after dinner. I did one session every other day. The goal was to do a 1-hour session. Do not try to do more than one session per day. You are not to try to do numerous short sessions. YOu are to try to do a continuous hour of weightlifting once every other day.
First, I lifted just an empty bar on a weight bench. So, that was my first bench press. Then, I lay there panting for a number of minutes. Then, I did one crunch while laying on the weight bench. A few more minutes of panting.
My first attempt was a few seconds of weightlifting and a lot of resting in between. I had my husband there for moral support.
I did this in our basement. My legs shook just trying to go down the flight of steps.
My husband rigged up a pulley so I could do various arm exercises. I also did back exercises by standing against a wall and bending my knees, then holding that position.
I had hand weights also.
Every other day I did what I could. It took a long time to work up to a full body routine. I remember we had a clock there so I could see how much time had elapsed. After a few months, I was up to 30 minutes of weightlifting. It was a major victory for me.
Adding weight to the bench press bar, to the leg lift bar, etc. were more victories. My guess is it was about 3 months before I could do a full hour routine.
I did a few bench presses, then the crunches, then the arm pulley, then hand weights, then the back exercises, then leg lifts. Then, start over again.
Eventually I noticed that I had gotten arm muscles. I couldn't believe what I was able to do. After so many years of having extreme muscle weakness, it was like a miracle.
I would be tired and just go to bed within 1 hour of my weightlifting routine.
Burrascano says that at first you may need 4-5 days to recover. However many days you need, that is how many you take. Then, you try again.
I didn't have a problem recovering. My problem was just attempting to lift anything at all. I cried while I was doing all of this because it felt like I had been told to climb Mt. Everest. It seemed impossible. I couldn't believe that I would ever be able to do this. But, I was determined to keep trying since I was told it was the ONLY way I would ever recover from this horrendous disease.
This brought me out of so much. But, I had to keep trying every other day.
If you don't have the extreme weakness I had, then do what Burrascano says--do numerous repetitions of very light weights so that you are able to do a 1 hour routine. So, do 2 minutes of bench presses, 2 of crunches, 2 of arm weights, 2 of back exercises, 2 of leg lifts or leg presses, 2 more of a different arm exercise, etc. Once you have designed your full body workout, you do each muscle group as long as you can and then move on to the next group.
When I was fully recovered, I did arms for 15 minutes, then legs/back for 15, then a different arm machine for 15 and a different leg/buttock machine for the last 15. I did this at a gym using a total of 4 machines. I also did a few crunches.
By doing it at the end of the day, you are free to crash for the night. Study what Burrascano says. The one continuous hour is important. I couldn't do that for a very long time.
Some selected quotes:
For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts.
Have the patient complete a gentle hour of prescribed exercise, then go home, have a hot bath or shower, than try to take a nap. Initially, patients will need this sleep, but as they recover, the exercise will energize them and then a nap will no longer be needed.
Use minimal resistance but a lot of repetitions in any exercises prescribed. At the start of the exercise program, especially if the patient is weak, avoid free weights, bands and large exercise balls, and favor machines (especially hydraulics) that can guide limbs through a prescribed arc; free weights, etc. can risk hyperextension and uncontrolled movements that may cause or add to injuries. Transition the patient slowly to the gym-based program outlined below.
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.
a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions. This can be accomplished in exercise classes called "stretch and tone", or "body sculpture", or can be achieved in the gym with exercise machines or carefully with free weights (see cautions above).
3. Each session should last one hour. A gentle hour is preferable to a strenuous half-hour. If the patient is unable to continue for the whole hour, then decrease the intensity to allow him/her to do so.
(from pages 31-32)
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-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 632 | From USA | Registered: Jun 2011
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posted
That is helpful! Thank you TF. I tried doing some exercises yesterday and it really did feel like I was being told to climb mt. everest.
I use to go to the gym every morning and do crazy workouts... I shouldn't compare myself to my old self I guess.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I would say that you are now on your way!
Let us know when you climb the lyme disease Mt. Everest. I am sure you can do it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I just started working out one month ago and at the advice of a friend have only been doing body weight exercises - just moving my arms and legs with intention, trying to isolate specific muscle groups.
I am now able to do 3 sets of at least 15 reps for each major muscle group, so I am "graduating" to resistance bands and weights!
I agree I think the muscles are weak from neuro problems - but what has surprised me is that the strength is coming back much more quickly than I would have thought - I'm definitely not even half way back to where I was, but even in 1 month of T/Th 1 hour workouts (mostly resting, at first, now mobile for the whole hour), my balance has come back very well!
Some strength has also returned, and I can see muscle definition in my arms (when I squint) that I haven't seen for at least three years.
Of course, I still have that totally unbalanced *feeling* - bumping into walls and such, especially when I get out of bed, but when I *try* to balance, I can now do so without falling over.
Anyway, I wish you luck HW88. It really has made me feel so much better about my treatment and prognosis, such as it is, overall.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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