Topic: What maintenance protocols have helped you the most? What kept you in remission?
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I'm wondering, for those of you that have reached the dream of remission, what has kept you well?
What advice did your doctor give you once symptom free?
Do you have a protocol that you are following post abx therapy?
Thanks a bunch!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got rid of lyme, babs, and bart over 7 years ago now. My doctor didn't give me any advice when we ended my therapy.
I think the key is ending therapy when you really ARE well. My doc made me stay on meds for 5 months past my symptom-free point. DON'T ever end therapy in winter. It can lead to relapse. My doc made me take meds until spring arrived.
I also believe that the key to not relapsing is doing the Burrascano required exercise program. I believe this because it is what Burrascano believes and positively states and it was a requirement of my lyme doctor because he also believes it.
My doc told me that I would NEVER get rid of this disease unless I did the weight lifting. The other lyme docs that I recommend (they all follow Burrascano) ALL tell their patients the same.
I did one hour of weight lifting every other day--this is the required Burrascano exercise program. This boosts your immune system. That is the key to not relapsing.
"LYME DISEASE REHABILITATION Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission." (page 31)
Read beyond this paragraph in the Guidelines and see the rationale for why this works.
I don't follow any protocol since stopping therapy. But, I don't smoke and I rarely have any alcohol. These 2 things help to maintain the immune system.
About 2 years after my lyme treatment ended, I had 2 steroid injections in my spine. Still, the lyme did not recur. I also was under extreme stress for at least 2 years and still did not relapse.
About 3 years ago, I got bitten again and got the bulls eye rash. I got to my lyme doc within a week of the bite. He put me on meds for lyme, babs, and bart (2 antibiotics total) and I had a mild herx on day 2. I never got any other symptoms, so I was finished after 30 days. No recurrence of my lyme disease.
About 2 years ago, after taking a nasal steroid spray daily for 3 months, I began catching every illness that came along. This went on for at least 3 months, so I figured the steroids had weakened my immune system. To boost my immune system, I went back to doing the 1 hour of weight lifting twice per week. This worked immediately and the continual sicknesses stopped.
So, I have proved to myself twice that the weight lifting program is the best way to keep your immune system strong and avoid any relapses or other illnesses.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You had steroid injections in your spine and no issues? Wow! It is something I have been contemplating, but thought it was a bad idea. My SI joints are constantly inflamed.
Posts: 1750 | From United States | Registered: Dec 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had steroid injections in my spine 2 YEARS AFTER I got rid of lyme disease.
I did not use ANY steroids while I still had lyme.
Please, don't even consider it while you are still treating these diseases unless it is life-threatening. Otherwise, you will likely regret it for the rest of your life.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
While you were being treated for lyme did you have issues with your spine? If so did the treatments seem to help at all?
Posts: 1750 | From United States | Registered: Dec 2011
| IP: Logged |
nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
is Cortef Ok to take?? while treating lyme?/ Pharmacy said is steroid....Dr, S book has a low does for adrenals....but still..The shots had/have made my life H____
and I don't need any opps maybe we shouldn't have..
Thought about asking
Natural...doesn't seem to be kicking in...Six said fatigue was the last to go for her....
I have a long way to go yet..but trying..
Posts: 2563 | From Denver,CO | Registered: Aug 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I didn't have back problems when I had lyme.
My back problems occurred 2 years after I finished lyme treatment. I herniated a disc, had a bulging disc and found out I had degenerative disc disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for that advice TF. I am not weight lifting but I do exercise. The last time I tried to commit myself to a membership in a gym was when I was bitten. I went twice and paid for a year. I had to quit everything I love doing. Maybe now I could try it again.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
TF, what kind of weight lifting did you do? Did you use free weights or bench presses?
I have 5 and 10 lb dumb bells. Would that work. Do you need to do more than just upper body?
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From page 32:
"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/or resistance training, using light resistance and many repetitions."
Above this, it says to exercise each muscle group.
So, Burrascano says that it must be a whole-body exercise program. It has to be upper and lower body.
So, you are going to have to do some leg lifts or other exercises (calesthenics) that exercise the legs.
We had a basic weight bench. I could do bench presses on it (guided by the machine, not a free weight) and also leg lifts. I also did crunches. Then, we rigged up a pulley so that I could do other arm exercises with it. I also used some light free weights to do various arm exercises. I also did back and leg exercises such as leaning my back slightly against a door and bending the knees to a 90 degree angle and holding that position for so many seconds. This is a back and leg exercise that I had gotten from a doctor.
So, that covered chest, arms, abs, legs, and back.
At a gym, you just use a number of machines so that you cover all the muscle groups.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I also do nothing to stay well.
Because my family has always been into fitness and eating well, I do work out and eat right. I like pilates, which is moderate strength training and some work on flexibility. It is by design a whole body workout that uses all muscle groups in each session.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I have been in "remission' for 6 months. My dr. told me : 1. do not get another tick bite! 2. get plenty of restorative sleep 3. eat healthy 4. hydrate
I have been trying to exercise with weights,pilates, etc. but find it extremely frustrating as I got so out of shape in the 5 years of Lyme and Co. My weight is ok but I am so out of shape! I have been having back aches and have no core muscles!
I guess I will keep on working at it. Anyone have any suggestions? laurie
Posts: 256 | From long island, new york | Registered: Feb 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you like pilates, maybe get a few private sessions. I much prefer to teach private sessions because I can tailor the workout to the individual needs.
At least a "duet" where there are only two clients. Group pilates is generally done at the intermediate level, so is too difficult for someone who is a beginner, and too easy for someone who is advanced. Pilates should get the core stronger and help the back pain.
If you prefer weight training, maybe get a few personal training sessions.
Good instructors in either discipline are trained to work with special cases. Unfortunately, there are a lot of bad instructors out there, too, so be sure you check into how much training they've had. To give you an example, my training was 600 hours.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic