Do you have lyme? How ill are you? How effective has treatmtent been?
Yes it will make it worse. Do you get more fatigued and do not recover well? I had terrible face and neck pain; activity increased it. All my symptoms that kicked in at different stages were worse with exercise and general activity. One lyme dr. said do not have these patients do aerobic exercise as they are literally starved for oxygen. I believe it.
You have to learn how to pace and limit activity, which is very hard because how you feel changes from day to day.
Best things for me for the face pain was effective antibiotic treatment and getting lymphatic drainage massage in my neck, face for over a year, through physical therapy.
I asked about the Lyme facial pain. I do have Lyme and my main symptom is headache/facial pain. Exercise does make it worse, so I don't. Is there anything that helped your face pain? Mine gets so terrible at times! I am on treatment, antibiotics, antifungals, and supplements like probiotics. Any advice would be much appreciated. Please and thank you.
My husband and daughter both battle lyme. For years, when hubby exercises or does rigorous activity (because he overdoes it when he has a "good day"), he ends up the next day with diarrhea and horrible neck, jaw, shoulder pain.
The explanation from our LLMD is that the increased oxygen and blood flow is actually killing off borrelllia (lyme) bacteria. The resulting die-off causes toxins to build in the tissues and in his case the GI tract. The muscles ache with toxin, and the GI uses the diarrhea to expel the toxins.
Steady, low impact exercise is essential. Cardio is great, in small doses. Borrellia hates oxygen and heat. Exercise creates increase in body temp and oxygen.
SUGGESTION: HOT baths daily...as hot as you can stand....with 2-3 cups of epsom salts and a quart or two of hydrogen peroxide. THEORY: Hydrogen peroxide adds an extra oxygen molecule to the water, and bonus...has an antiseptic effect on the skin..the organ that must "throw off" the toxins. The heat and epsom salts open the pores, increasing the effectiveness of the peroxide...and bonus...eases the muscle aches!
It is a low cost treatment that really works.
Our best wishes for your trek to recovery!
Forgot to mention...the hubby actually uses a snorkel in the tub! His thinking is that he is treating his full body if he submerses himself. We have checked his temp...and we try to get his temp to 101 for 5 minutes at least a couple times a week.
Of course, you would not want to keep your brain in very hot water for long, but in the shower/bath heat, he has found it effective.
He used to have a constant patch of itchy dry red skin over his nose and eyes....he no longer has that if he continues this therapy on a regular basis.
His theory is also that (no this may just be fanciful thinking) but in the wild, foxes and dogs will hold a stick in their mouths when they have fleas, wade into the water, until the water goes over their heads, chasing the fleas onto the stick...which they let go to float away.
Now you probably think I am a crazy person! haahahhaaaa...
But sometimes we need to visualize treatments working...positive thinking and attitude are paramount....so he imagines the bacteria have nowhere to go when he is submerged, so they die.
I hope you dont think I am psycho!. :o)
But drastic times call for drastic measures, right?
I have neuropathatic pain and I find that exercise may exacerbate pain, but usually afterwards I feel better, which I suppose maybe due to endorphins helping. At some point afterwards my regular symptoms return. I think exercise is net beneficial, but definitely frustrating that it is tougher to do when it hurts.
If you have peripheral neuropathy symptoms as I do, then I find that heating is worse for skin pain. I guess each person has their own experience, cold showers are better for me.
my dr was so happy that we had a hot tub. she said to try to use it every other day and stay in about 15-30 minutes. Personally i like it between 99-101. said I would be very tired afterwards but that it will help to increase die off. Well what a great excuse to have to relax!!! I am taking full advantage when I can... as a side note..we are all a bit "crazy" at times, once i get comfortable I always think "okay you cites, time to die" it brings me a little triumph while I am in there.. we all need that mental boost even if it is a little off the wall at times.. lol
I was first diagnosed with Fibro and told that exercise would eventually make it better but to start very slow and work my way into it.
I worked out for a long time, and ate a very strict diet. Mostly vegtables, and fruit. It did help some but never really made it go away. I did find I would have times of feeling better. But I was always sore and worse 4-6 hours after exercise.
Since starting the ABX, I had quit working out, because of the nausea, until the last few days, when I have notice much improvement overall. I was a little sore, but nothing like I used to be, and I am starting slow. AGAIN! Try water arobics, as the water supports your weight and makes for easier movements, also, try something you really like but slow it down, and see how it goes.
One more thing, and this one is a little strange. Just add weight to your regular movements is helpful as well. My son has trouble with his feet and legs. So, for him walking and running are terribly painful. So, to add resistance for him and to help build up some muscle, we got him Steel Toed shoes. The shoes weigh about 1 1/2 lbs each.
so they make him work harder just to walk around. After a while you don't even notice the extra weight, but when you don't wear them for a several days and you put them back on, you do
Far infrared sanua is a good thing to check out for detoxing and heating up the body. A lot of scientific evidence on far infrared saunas helping out many conditions. I would recommend High Tech Health as a infrared sauna brand since they use non-toxic wood. Unfortunately, some sauna makers use questionable wood.
I used one for two weeks, 1/2 hour a day. Loved it and I'm pretty sure it helped. I used it at an out-of-state facility but did find a place locally that has one. They charge $35 for a session.
Here's some far infrared sauna info:
I finally found a place that has an infrared sauna. It's a couple hundred miles away and in a small resort town. I'm sure there are places in my city that have one... so I'm still checking. If not, I'll take a spa vacation ! ; ^ )
Yes, the weakness will go away with treatment. Don't give up.
To everyone: Because Lyme also afflicts the heart, please check with your Lyme dr about your exercise regimen to be sure you are not overdoing it. I personally walk, and that's about it, along with hot showers.
I haven't been diagnosed with lyme but get terrible head aches and neck pain, EPSOM SALTS in a hot bath [about a teacup full] really helps me - it's cheap too!! It is basically magnesium. I only walk for excersise, anything else is too painful - afterwards . For some reason I remember my grandma always going-on about how good Epsom salts are. I can't remember why she used it though!!!
Here is a really really good site to help anyone who's searching for some answers with getting moving who has Lyme. It's a really slow slow process and everyone is different but the idea is to continue surging forward even when you dont want to...
I find a 30 to 60 min. walk good at keeping my muscles/tendons from hurting - I do a 2.5 hour walk once a week - it works for me!
When I say walk I don't mean a trudgre around the block - I try to get out into the clean/fresh air - away from traffic fumes - I do up and down hill walking - sometimes when I start out I feel I am in too much pain to get far but once I 'get going' the pain eases and often has completely gone by the time I am on my way home.
I think walking is a good place to start for folks who are feeling well enough to start excersise - I find aerobic type excersise can make my neck/shoulders/head more painful.
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!!
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!
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?
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.
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!
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.
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.
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.
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...
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."
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?
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.
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.
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.
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.
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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