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exercise make it worse?

I do cardio everyday for 30 minutes. My face and head hurt so much worse both immediately and hours after I exercise. Does exercise make lyme symptoms worse?
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Avatar universal
Welcome to MedHelp Lyme -- I think you are asking all the right questions and putting the puzzle pieces together well.  Here is some more data for you:

There is a significant split in the medical community about how to diagnose and treat Lyme disease.  The less advanced (but deeply rooted) view of most infectious disease MDs is that a few weeks of antibiotics (usually only doxycycline) is enough to kill the Lyme bacteria and you are good to go:  any remaining symptoms are said to be simply your immune system continuing to (over)react to a now-eradicated infection.

There are at least three problems with that approach:

  --  biofilms:  these are slimy cyst-like shields the Lyme bacteria create to hide in in your body, so that your immune system can't easily locate the bacteria to kill them.  Doxycycline cannot penetrate the cysts, so the bacteria are not wiped out and continue to party on.  Other meds need to be added as 'cyst busters' (Flagyl/metronidazole is what I took, but each Lyme doc has a preference depending on various factors).

  --  co-infections:  about half the time, Lyme bacteria are accompanied by other bacterial infections which need separate testing and often different meds from Lyme.  Some of these co-infections are bartonella, babesiosis ehrlichiosis, and a few others.  It takes a well-trained Lyme specialist to know from the subtle symptoms what possible co-infections to test for.

  --   slow reproductive cycle:  Lyme bacteria, on top of hiding from the human immune system in biofilms, have an unusually slow reproductive cycle for a bacterium.  It is when the bacterial cell wall is disrupted upon splitting one bacterium into two that the antibiotics can do the most efficient killing, but the ten days or two weeks of antibiotics usually given for earaches etc. don't usually cut it with Lyme, because the bacteria reproduce so slowly.  Antibiotic treatment is usually months, not a few weeks, and depending on which co-infections you have, different meds may be used in sequence, not all at once.

To compound that problem, the standard tests for Lyme disease (called Western blot and ELISA) are structured to look for the *antibodies* against Lyme that your immune system makes to try to kill the infection, but Lyme bacteria have the ability to *suppress* your immune system and cause there to be insufficient antibodies made to fight against the bacteria.

There are other antibiotics that penetrate the biofilms, allowing your immune system to find and kill the bacteria, and a Lyme specialist knows what order of battle to engage in with the various bacteria, and also what meds are needed for which infections.  One size does not fit all.

All of the symptoms you mention above I have had or have read or heard from others -- the trick is finding an MD who understands Lyme.  Lyme will not go away by itself.  

The doc who told you that you are just stressed would appear not to understand Lyme at all.  The brain fog you get is not uncommon -- some have it worse than others, and in some it comes and goes.  There is a documentary you might want to watch called 'Under Our Skin', which I think is available online.  It identifies the confusion in the medical community about Lyme and its co-infections, and gives a frame of reference for the kinds of off-the-wall doc comments you have been getting.  

'Lyme' was identified only a few decades ago, and it has spread like wildfire across the US and elsewhere in recent years.  The MDs who did the initial research on Lyme are senior docs now, but they still hold pride of place and cling to their earliest impressions of Lyme as being rare, hard to get, and easy to cure with a couple weeks of doxy.  The Infectious Disease Society of America (IDSA), a voluntary group for docs who work in the infectious disease field, clings tightly to the 'rare, hard to get, easy to cure' mantra, and the US govt Centers for Disease Control (CDC) are good buddies with the IDSA.  Same-o, same-o.  

What to do?  Get complete copies of all your test results to date -- by law, I think the doc's office is required to give them to you on request -- and be sure to specify ALL test results.  Staff hate to stand at the copy machine and too often skip over stuff they think is unimportant, but that's not for them to decide -- so specify that you want all test results and notes and so on -- whatever they have.  When I get the fish eye from someone like that, I just smile and offer to pay for the copies -- but by law I think they *have* to give you the test results for free:  you or your insurance company already paid for them.

To find a new doc who understands Lyme the ILADS way, you can search online for 'Lyme disease' and 'LLMD' and perhaps your state or cities nearby.  LLMD is patient slang for 'Lyme-literate medical doctor', but is not a degree or title -- just a way for us all to identify a doc who really is up to date.  Virginia definitely has ticks, and therefore Lyme.  I just search online for                virginia lyme disease specialist               and got lots of hits.  

ILADS also has a referral function on its website, but sometimes local patient groups are the most tuned in.  Check them both, or ask a friend to help if you're not feeling up to it.  (I remember brain fog!  It goes away with treatment.)

Your description of your history and symptoms (and encounters with the docs) are very familiar to many of us -- no two Lyme patients are the same (due partly to varying co-infections and our own immune systems), but you'll start to see many others in your situation or similar.

Let us know how we can help -- and by the way, I was treated with antibiotics for Lyme and a co-infection similar to malaria (babesiosis) for close to a year, and I am still now healthy some ~7 years later.  I wish the same result for you!
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Avatar universal
Hello,

I was wondering if anyone, that's been treated for Lyme, experiences heavy limbs hours after working out or any neurological symptoms. Almost 3 years ago I was diagnosed with lyme (after 6 months of strange symptoms). I was treated with antibiotics for a month, things got a lot worse in the beginning and then I started seeing an improvement. I started working out a few months after treatment and gradually increased my workload to get close to where I was pre-lyme.

Fast forward to now and I'm still not where I was before the lyme, but I'm a lot better. I notice my body takes forever to recover, I still experience the muscle pains in my legs even on light days and how lethargic I feel isn't the same as it was when I was diagnosed, but it's still there. And these weren't things that went on pre-lyme. Whenever I decide to up my workout and exert a little more energy, I'll start to experience neurological symptoms. Like I'm out of it or something. I usually wake up in the middle of the night with heavy limbs and sometimes that "brain fog" comes back or I'm unsure about what's reality and what isn't. I do notice that it's usually on upper body days. Does anyone else have this problem? I'm seeing a new doc now and he says it's not the lyme, it's stress. I'm not stressed and these are things that didn't start until I had lyme. They went away for a bit, but are back. I know I'm all over the place, but hopefully this is a decent description.
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1 Comments
I have not been diagnosed with lyme but this post exercise symptoms are almost identical to what I experience. My doc says anxiety but I  do not feel that this is anxiety. It is a very specific physical response to any strenuous exercise where I over exert myself. The effects of it are felt for sometimes two days after : /
798555 tn?1292787551
Great lost post on lyme slow exercise muscle recovery/aches/pain. Slowed muscle recovery was (is) my worst symptom. It gets better some weeks, now off ABX (break) the aches are increasing again. I felt the best ever in April.

In the 90's I was a pro endurance athlete for two years and this lack of muscle recovery drove me nuts. It took until 2013 to find it was lyme from I'm guessing way back 30 yrs ago.
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2109342 tn?1380908975
Sorry to hear about your breathing difficulty. My breathing isn't as bad as yours....but was that bad, a few months ago. Must be something we can do to improve our breathing.

As for the muscles, I know exactly how you feel Ricobord. I had a rough time, for a long time. Still can't do a lot of lifting, tugging & pulling. Legs are good now, but still need to favor my arms & shoulders. Vacuuming is difficult for me, too.

Let's hope it won't take long before we get our muscles are toned again.
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Avatar universal
I have breathing problems, too.  I haven't been able to exercise as I've improved because I get short of breath quickly and can't take full breaths consistently. I just try to move around more, such as walking and housework.  (Of course I am so thrilled that I can do more housework.).

I think I have very little muscle tone left after so much inactivity. I am wondering how long it will take to build it back up again.
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2109342 tn?1380908975
Thanks, Jackie....and all, who have posted here.  

Even though I'm feeling so much better, these past few months, I'm having breathing problems when walking on anything but smooth surfaces....grass, stairways, etc. I can now walk long distances without pain or limping. Thought it best to start exercising to build up my chest muscles, a little. Forgot that Lyme "afflicts the heart", as you mentioned above. Will be cautious with any exercise I decide to do....and won't be aerobic, for sure.

I'm not having much pain, these days, but know my limits. Weights would only start the pain (in shoulders & arms) again. Just need an exercise to help me breathe better, when walking on grass or going up stairs. I will do the stretching....no problem with that one. Not being an "exercise type" person, wondering if anyone can give me at least one more?

Thanks in advance
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Avatar universal
Hmmm makes sense to me...maybe I'll just stick to weights from now on.
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Avatar universal
PS that quote is taken from a chapter by Steven Harris, contained in Connie Strasheim's book 'Insights into Lyme Disease Treatment'.  
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Avatar universal
Steven Harris, one of the well-known and respected LLMDs, has this to say on exercise (copied from http://www.lymebook.com/steven-harris):

"I think that Dr. Burrascano’s approach to exercise is right on. He advocates weight training with lightweights, as well as stretching-type exercises, but cautions against doing too much aerobic exercise. I agree that people with Lyme need to stretch and do gentle exercises, and that too much aerobic exercise, too fast, will deplete the adrenal glands, decrease T-cells, and open up the blood-brain barrier so that more Borrelia can get into the brain. Anaerobic-type exercises are more important, especially when people are just starting on a new treatment protocol."
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Avatar universal
Yeah. I was in pretty good shape to start with before Lyme blindsided me. I feel you, most days I feel much more like laying around in bed than exercising. Gotta try to lead as "normal" a life as possible though. Baby steps...
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Avatar universal
Wow.  You can do 15 mile rides? That is terrific!  I look forward to being well enough to ride a mile. :)
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Avatar universal
The same thing happens to me!
It doesnt happen every time I do cardio...but maybe half of the time. My cardio sessions are usually 15 mile rides. Im a personal trainer+lucky to be able to exercise as strenuously as I do feeling as sick as I do a lot of the time...but if I dont exercise I feel wayyyy worse.
So yeah, it feels like your heart is racing/pounding and kind of keeps on for a while even after you stop the activity. It freaked me out, so I went to a cardiologist where he ran a battery of tests:everything came back better than normal. I think its just a kind of herx from bacterial dieoff because of the extra heat and oxygen in your system. It gets better...Im on month 5 of treatment(2 oral abx 2x daily+bicillin shots 3x per week) and the episodes are less and less common.
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Avatar universal
everyone has good comments.
i can't exercise yet. just some housework and the errands cause me pain and fatigue. then the next day i am really tired and get the pain.

i have had 5 tests all neg. but symptoms like everyone here.

I must get more heat and oxygen..i had a med change for another disease so perhaps the old ones were making me have these symptoms. idk over a year now.
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Avatar universal
i hope you have a good recovery!
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Avatar universal
Hi there - London calling.

I have just finished my first round of antibotics - I had to self diagnose after a tick bit in france this summer and then my doc agreed. You wouldve thought the ruddy great big red bullseye rash might have been a pointer but no. Luckily there is the great goddess google so i was able to go back in and demand the tests and the meds. He agreed! Sheesh. Hopefully I have caught it early enough that I can squash it and not get to the point of such horrific delbilitation that you are all in. My heart goes out to you.

I started exercising last week after the meds and immediately got sick again. So it is interesting to read what you have written. I left if for a bit and then started to go slow at the end of last week I am doing light barefoot running on grass in the park and low impact power plates. Power plates is great cause you dont actually have to move much and you still get a work out.

Will take on board what you are all saying about the heat and the slow repro cycle. I went back for more antibiotics but my doc didnt seem to think they were needed unless my joints were swelling up. I told him to do some more reading.

Lets see! Its clearly all about taking control of your own life and health, something I believe in strongly anyway.

All very bests

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1763947 tn?1334055319
Ditto Rico and Jackie,
I am in too much pain to do anything but walk in my pool. My LLMD thinks pool walking is the best for those like me still in bad pain
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Avatar universal
I brought this on myself... Sometimes I get so frustrated with being sick it clouds my judgement.  I've been working out pretty regularly for the last month, 30 minutes of weights one day, some walking/jogging on another.  I started sprinting which was really fun!  A couple weeks ago I got up to 5.5 miles for a run.  Boy was my ankle sore after.

It got crazy hot here last week like upper 90s, so I took some GNC Hot Rox and did sprint intervals on the same 5.5 mile route.  Thinking about the oxygen and the heat for the borelia.  I may have totally overdone it.  Really paying for it now.  Foolish, I know, but I just want to get better and get back to my life.
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Avatar universal
Well said, Rico.  Ditto what you said!  Start slow, build up.
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1 Comments
And well said Jackie and Rico. Like you Rico, my muscles are just like Jelly/jello
Avatar universal
I think running a mile with Lyme sounds amazing!  It is only in the last month that I can walk 300 feet without pain.  My doc insists on exercise, even if it's just moving around or stretching. He does not recommend exercise to the point of pain or exhaustion.

Because it takes us a long time to recover from exertion, I believe we each need to find our own balance of activity such that we don't overdo it, but still get enough exercise to keep us going. I doubt anybody else can tell you how much that is, but you might consider stopping short of headaches and dizzyness.  

Because I have moved so little for months, I realize I have no muscle tone left. I have a lot of rebuilding to do.  I used to complete a difficult 60 min yoga class before I got too sick to go.  I shudder to think how pathetic I will be when I go back.  I think I will have to find a beginner 30 min class!
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Avatar universal
Hi gang. New here. I've been batling Lyme for over 6 years now. I've been an avid runner since I was 15 (now I'm 43). I have had the usual fatigue and aches with exercise, but have always managed to keep my routine. I HAVE to run! :)

However, just 2 months ago I began feeling EXTREMELY light headed after a mile. Always after 1 mile. I feel as though I will pass out. And often my heart rate gets too high. And sometimes when I stop I feel anxious or like my heart isn't slwoing down.

I've been checked by a very good cardio doc and he says i have the heart of a 15 yr old!! - After doing the "stress test". But yet I ca't run a mile.

I also get bad heachaches during running. Like a tight band across my head.

My Lyme doc, doesn' have any answers for me.

Any of you have anything similar?
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1 Comments
Yes.... these are the symptoms I used to experience but they got worse and worse until I couldn't even do a half a mile. The headaches became unbearable and I got so dizzy with heart palpitations. Are you on treatment?
Avatar universal
Welcome --

I don't recall Oliviamarie posting here for quite a while, but perhaps she checks in without posting and will see your message.

I like the sound of your internist -- at least he/she is considering Lyme!  (Gotta love the contortions docs go through to avoid considering Lyme -- but gotta say, atypical trigeminal neuralgia is a new euphemism for it in my book.)

Has your internist tested you for other infections often (maybe half the time) carried by the same tick that brought you Lyme?  The tests are different, the symptoms and effects are different, and treatment is different from Lyme.  

That may be why you are not seeing a response to abx, and also, Lyme needs longer treatment that 'regular' infections because the Lyme bacteria have a very slow reproductive cycle, and its while reproducing [cell walls splitting, I think]  that bacteria are most susceptible to antibiotics.  This is true also of leprosy (Hansen's disease) and tuberculosis (TB), but lots of nonLyme docs don't know this, it seems.

Has your friendly doc mentioned either of these aspects?

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Avatar universal
I know your post has been up for some time.  Did you ever get better?  I really hope so.  I have been diagnosed with an atypical trigeminal neuralgia, though my internist has insisted that it is Lyme Disease.  I have had several rounds of antibiotics -- not much improvement.  Very curious to hear your story.  Thanks!
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Avatar universal
Hi everybody....I too have lyme disease. I've had it since July 2009.

I am a powerlifter and pro strongman competitor....believe me when I tell you how much lyme hates oxygen and the heat. I battled (still do) herx symptoms after every training session. Even today, I got ataxia, stabbing head pain, and anxiety/panic. It's ******....but that means WE ARE WINNING!!

Jeff
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Avatar universal
I think that I have Lyme, still diagnosing, and exercise (hard with high heartbeat ~170) plus steam room everday reduce my symptoms for a few hours.
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