I am in alot of pain right now. Have'nt felt this for a very long time. Since before I was diagonosd. I went for a 5 mile bike ride yesterday. I went very slow compared to what I'm use to. Last year I could do 40 miles with no problem. I felt fine after the ride and for most of today. Then, this evening everything started hurting. Every joing is in pain. I have two ice packs on each ankle and need two more for my wrists and for my elbows. I can't sit still because the pain is so bad. I started amoxicilion a week ago yesterday (friday). I would think I would have herxed by now if I was going to. My question is could this be a herx or is it from the bike ride? I hope not from the ride because I do a week long ride every summer. It's the one thing I look forward too every year. Funny thing is my symptoms first showed up on the ride last year. Every have the worsed shaking chills of your life in a tent? Not fun. I really want to go again this year but if a 5 mile ride does this to me I'm no huge trouble. I just took more of my pain meds even though I just took some a couple hours ago. I guess It's going to be another long night. I was wondering what you all though about this, is it herxing or from the bike ride. Please help. This pain is awfule.
Posted by Keebler (Member # 12673) on :
- Q: " . . . could this be a herx or is it from the bike ride?"
Both. Lyme is very complex. Lyme's toxins are some of the most toxic known to man. Stress on the body makes that worse.
Exercise details and support links in this first post; Herx links in the next one, at a different thread.
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle, page 37.)
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. [what CFS is called in the UK.] . . . .
. . . In 1988, Reyes and his colleagues exercised mice suffering from Coxsackie B3 myocarditis -- inflammation of the heart muscle caused by the virus.
They showed that the effect of exercise on the production of the neurohormones which regulate immune response and inflammation led to an increase in susceptibility to Coxsackie virus infections -- the host response was altered in favor of the virus. . . . .
. . . Cont'd at link above.
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As well, the adrenal dysfunction that often plagues lyme patients must be considered on an individual case. If a patient has severe adrenal exhaustion, aerobics can be damaging from that perspective:
See page 4 where Dr. Burrascano describes a bit about the considerations of the dysfunction with the HYPOTHALAMIC-PITUITARY AXIS
There are other authors of adrenal dysfunction books that go into greater explanation of the extreme care required as someone with adrenal damage undertakes exercise and conditioning program. -
Rehabilitation is outlined on P. 30 - 31
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Mitochondrial dysfunction can be a huge factor in lyme. Lyme damages mitochondra. So, as the mitochondria are the tiny energy centers of our cells, this presents a huge factor for energy output.
There are some things to help the mitochondria. Magnesium in one of those. D-Ribose is another. Hawthorn, too, as it helps the heart.
This thread also has some great information about what might be happening to the heart function of some patients who struggle with fatigue (and what can help).
There is a 3 hour video - you can watch free on your computer and many articles at this thread:
Topic: Started Doxy about a week and a half ago...side effects? -
Posted by sparkle7 (Member # 10397) on :
You have to be careful with exercise & Lyme.
There may be a number of reasons why you are in pain. One may be that the cells in your body are not functioning properly. I think it has to do with ATP but I'm not a doctor or scientist. Could be inflammation...?
I'm sorry - alot of people go through things that ruin their enjoyment of life with this illness. You may just have to scale back & take it easy. I know it's a big drag!
Herxing can go on for a long time, as well as, treatment. Try to hang in there. Many of us take pain meds when necessary. Sometimes you have to just to function.
Hope you start to feel back to normal soon.
Posted by cjbrklich (Member # 24607) on :
I have to train for a week long bike ride I do every year. I asked my LLMD if I could still do it and he said it would be good for me. Maybe he was just thinking about the exersising part? If I feel like this every time I ride I wont be able to do my ride in July. I have to do the ride. It's the only thing I have to look forward to. There has to be a way I can make it work. But this pain is awful. I guess I will have to learn to deal with it and live with it and just ignore it so I can do my ride. Is it even possible to do a week long bike ride with lyme? Am I just fooling myself to think I can do it?
Posted by Keebler (Member # 12673) on :
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Page 32:
1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered.
. . .
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 nonexercise days should be spent resting.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . . To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
. . . .
- Full article at link above.
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Not only when to suspect lyme - but how this toxic spirochetal infection (once in the nervous system, in the brain, the heart, the liver, etc.) affects every system, every organ - and what that means for a person with lyme:
When to Suspect Lyme - by John D. Bleiweiss, M.D. -
[ 04-25-2010, 03:24 AM: Message edited by: Keebler ]
Posted by cjbrklich (Member # 24607) on :
Thank you for all the info. I'm very sad that this may cause me not to be able to do my bike ride. It's the only thing I have to look forward to. I've done it the past three years. This is the first time lyme has actually affected my life is such a big way. I've learned to live with it, the pain. But this is rediculous. Ouie!!!!
Posted by Keebler (Member # 12673) on :
- Find another joy this year. Take care of yourself and you'll have a chance at life. Not all lyme patients do. I'm not trying to scare you but this is a life-threatening infection and treatment is very complex and does not always work. You'll need every advantage on your side.
Looking back over your post history, I see this has been going on for a while and you initially only got 3 weeks' treatment. I hope this time, everything works out for you.
And, while no treatment path is a walk in the park, I do hope you can find some new joys - every day.
Take care. -
Posted by sparkle7 (Member # 10397) on :
If you are in serious pain - you have to listen to your body. The type of pain we have is not the same as "no pain, no gain". That does not apply to us.
If you take care of yourself & are able to spend some time to get well - hopefully, you will be able to do the bike ride again in the future.
Sometimes - you have to wait it out so you can get better. Maybe you can try some other type of recreation? Sometimes we have to adapt. You never know what new thing you will discover that you may really enjoy due to this "setback"...