Cynthia M Chase

Dear Ms. Chase,

I don’t understand what you mean by “aerobics” and “aerobic exercise”. Aren’t most simple exercises (walking, biking, jogging) aerobic? I know there are “aerobics” classes like Jazzercise but even these you can do at your own pace. You say to “work up to a strenous program of non-aerobic conditioning”. Short of wind-sprints and weight-lifting, can you offer some suggestions on how to achieve this?

Hello Eliza,

You ask a very important question. How can it be recommended that unless you exercise you cannot become well and at that same time you should not exercise vigorously in an aerobic fashion? Here is the key: most chronic Lyme patients are “deconditioned.” Gradual exercise will not exhaust and deplete you of what little energy you have; you need to slowly build strength and stamina. Dr. Burrascano indicates there is evidence that regular exercise promotes T-cell function (positive). However, aerobic exercise depresses t-cell functioning for 12 to 24+ hours (negative – temporarily), then rebounds. When you are very ill you need to slow it down and build up to a level that your body can manage.

Physical therapy/rehabilitation is urged for those who have become weak, have lost muscle strength and greatly reduced stamina. A whole-body exercise is what is needed so that all muscle groups organs and systems are strengthened. Just a treadmill, exercise bike or walking program is not enough in the long run. All body systems need attention. An example of whole-body exercise may be light calisthenics and weight lifting using small weights with many repetitions. A class such as “stretch and tone”, “body sculpture” and Yoga (my contribution) can be of vital help to the overall energizing and strengthening of the body. Dr. Burascanno recommends that each session should not last more than one hour, and be done no more than every other day in the rehab phase. Rest is as important as movement: there needs to be a balance between activity and regeneration.

However, my final recommendation is that you listen to your own body. Modulate the above recommendations according to your body’s ever-changing demands. Good luck. Cynthia

If someone has been bed bound for 10 years still undiagnosed wth lyme disease how damaging would entering a rehab proramme be.
My daughter has been in a neuro rehab for six month with no progress at all but there has been several areas of change for the worse.
She has physio every day, sometimes hydro, sometimes tilt/turn table or sitting on a plinth with 2 people supporting her. However this causes little pin prick blood vessels to burst in her feet and ankles. She has bilateral foot drop which is severe, they have been making her wear dorsiwedges daily 1-2 hours (this is all she can stand for the pain) and now her feet are in a worse position than ever, dropped and turned in and toes curled over. They want to permanently splint the feet now and I am fearful of what damage can be done if they do not address the lyme disease and continue to push this exercise programme.
They say after 10 years it will not be active, but she has had blood tests come back positive for mycoplasma and bartonella but a low titre which they say means nothing to worry about.
Any advice would be greatly appreciated.
Best wishes
Anne-Marie

Oh Anne-Marie, what a tragedy! Your daughter is so sick and for such a long time. You must understand that I am not a medical Doctor or naturopath, but I would be glad to reflect some ideas and thoughts that you might find helpful based on my experience and study. If your daughter has mycoplasma and bartonella as well as a positive titre why isn’t she being treated for these diseases? My understanding is that without treatment of the underlying cause rehabilitation efforts will not be fully successful. As the diseases progress there is a possibility of organic changes that may be irreversible so treatment is critical. You must see the movie “Under our Skin” (go to underourskin.com). The movie is playing nationwide and you will be able to order a DVD in September. You will see in the film a young woman who was devastated by the disease(s) and was able to recover in large part after antibiotic treatment. Hopefully with aggressive and appropriate treatment your daughter will recover. Please read the various summaries that I have posted on my website for additional information and guidelines, and you may also contact me at my e-mail address for direct communication. Good luck! Cynthia

Cynthia,
Thanks for reply! She is not getting treatment because we belong to the NHS UK and they do not believe Lyme Disease exists long term. The rehab unit firmly believe that no matter what they can rehabilitate her if they keep pushing the boundaries – I however feel like I am watching a train crash in slow motion!
Thanks for website have already watched it along with many others wish our doctors would watch it too!
Thank you
Anne-Marie

Anne-Marie, My heart goes out to you because I know how difficult it can be to be the only positive force in your daughter’s life, knowing that the answers haven’t been found despite what the “professionals” have told you. You are the most important person in your daughter’s life and you can’t give up.

While reading what you have been through, the word “mycoplasma” jumped out at me. This little bugger can really muddy the waters. I know you say your daughter has been tested, but this can be a tricky thing in itself. I have included a few websites below that will tell you more about mycoplasma in general (including the proper testing for various types), and more importantly labortatories (one in the UK too!) that will properly test for mycoplasma and lyme. You also mention hydrotherapy for your daughter. What is involved with this? Sitting in warm water or actively swimming? Swimming is a wonderful weapon against lyme disease. These bugs do not like heat which is why warm showers can bring about some temporary relief. Swimming (gently or vigorously) also allows the body to regain lost strength in a safe and gradual manner. It is never too late to start fighting these bugs! The best defense is a healthy body. Most people jump to antibiotics as the first line of defense. While this is not necessarily a bad thing, efforts to improve health and immune systems can be much more effective. My family and I started with the antibiotics, but really didn’t see the level of improvement that we did when we started to focus on diet (fresh foods) and supplements.

Don’t give up Anne-Marie. I can tell you from personal experience that perseverance is key in your daughter’s health. It took years to get this sick and it may take as long to get better. Nothing feels so good as those small steps forward in your child’s health.

The site below has a long article–read to bottom:

http://www.prohealth.com/library/showarticle.cfm?id=3066&t=CFIDS_FM

Site below has reccommended labs. In the US I reccommend Igenex. Any questions, don’t hesitate to call them. They are some of the nicest people I have talked to. UK lab toward bottom.

http://www.thepowerhour.com/news/mycoplasma_testing.htm

Kelly, thank you for those comforting words. You sometimes feel like perhaps they are right and I’m the mad one here. I wish I could get rid of the overwhelming feeling of dread that is sitting right in the pit of my stomach,
Her hydro consists of about 45 mins in the water, mostly passive exercise but with some assistance if she can manage it.
My biggest worry is that before she went to rehab, she was on a good balanced diet and other than probiotics, was on no medication at all.
Now NHS food is limited and boring and not nutritionally good, I leave her fresh fruit and juice but am not allowed to leave food I have prepared because of hygiene standards and re-heating.
She now takes 2 or 3 different painkillers at regular daily intervals along with sleeping pill at night, bowel medication to counteract the pain killers, I think this is crazy and just sticking a plaster on each new symptom as it comes along.
I hope and pray that eventually this will all pan out for the better but she is 23 and so they discuss decisions with her only and her predicament is do I believe you 2 parents that are not medically trained or the 20 medically trained people who say don’t listen to your parents, they are distracting from the task ahead, you must trust us we know what we are doing!
Best wishes
Anne-Marie

Hi Cynthia,

I read “Lyme Disease Rehabilitation – Last installment” and wanted to thank you for writing this out so well. There isn’t enough information out there to help people understand what to do after treatment or even for those of us who used to be athletes who were thrown off of our own courses due to this disease.

Personally, its the most difficult thing for me to get myself moving again and prior to my illness I was a triathlete. The healing has been slower then the decent into sickness was and at times… it’s hard to remain positive.

It helps me dramatically to read about exercise and how much it really can help me. It gives me that boost that I need to keep pushing forward.

Thank you

Hello, I am thrilled that you found the information helpful and that it is promoting you to exercise again. Oxygenation is important, and fighting through the fatigue (at the same time listening to the body about pace) is critical to avoid muscle weakness and degeneration. Endorphins do course through the brain following vigorous movement which fight against depression and helplessness as well. This is really a war, and we are fighting for our lives. Good luck and keep me posted! Cynthia

I have been reading your articles at work. I probably should be working but I appreciate your articles too much lol! Thanks very much.

You know, I’ve REALLY found your post really rather interesting. I can’t wait to read your next one, this has really struck a cord with me.

Hi Cynthia,

I’ve recently been diagnosed with Lyme disease. It is uncertain at this point whether it is new, or whether I’ve had it for close to 10 years, as I had no rash or fever recently. I’m going through the process of finding an LLMD (which is difficult as most don’t accept insurance, and I can’t afford it out of pocket). I’ve read the information on the Turn the Corner Foundation website, and done a ton of reading online. I am still confused over the exercise thing. I am not a weightlifting or gym girl by any means. And I have a knee injury plus joint swelling and pain from the Lyme, so any impact is not possible with me. However, I found that I can use the Cybex Arc-trainer (thanks to my PT) which has no impact on joints, but allows you to do full body strengthening as well as cardio exercise with some weight bearing. Is this okay while being treated with Lyme? It gets my heart rate up, but it uses total body muscle combinations. It’s the only thing, realistically I can do. Being that I recently spent the mnoey to buy it (before I knew I had Lyme), I can’t afford yoga or joining a gym, etc….. I feel like I desperately need to exercise, but I don’t want to hinder my progress either. Any help you can offer would be appreciated.

Hi Rosanna,

It looks like you are doing just the right thing. You are achieving aerobic exercise without damaging your joints. You are aerating you lungs and bringing in more oxygen (which the spirochetes hate), raising levels of serotonin in your brain to combat depression and building muscle which will give you increased stamina. Good for you. Just listen to your body and increase your protocol as you feel manageable. Keep me posted! Cynthia

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