Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Does anyone experience this?
I have to be very careful not to over-exert myself, or the next day or more, I have terrible symptoms.
What happens is I have a good day when I feel almost normal. I desire to have the experience of a normal day, because I haven't had one in so long.
I end up exerting myself more than I should, and the next day or several days I hit bottom, as a result.
Not only am I then totally exhausted, but I am in a terrible, terrible state of mind. So incredibly depressed and very, very easily irritated.
It is as if the Lyme (and who knows what else) zaps all the energy from the mitochondria in my cells and also zaps the seratonin in my brain leaving me acting like I am Bi-polar.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Absolutely. Some of the mood hit comes from the neuro and adrenal hit. I am well aware.
It makes perfect sense, really. I think we underestimate the neurological impact on, well, our NERVE fibers & actions.
The mood hit can be helped with adrenal support, magnesium & fish oil.
Not so much that this may be about cardiac function (it can be, though) . . . but cardiac support method here - along with the adrenal and mitochondria support may be of help.
posted
I used to get the same...big time. Profound fatigue from a small bit of exertion and it could take me days to recover.
Not so much anymore unless I am taking a med break or starting up again.
All you can do is keep killing. Don't stop eating your antibiotics and it'll get better and better.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks for your encouragement.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
This is a well timed post for me today. I have been struggling with this for a long time. I am off work except for an hour or so a day for the month while I try to deal with this relapse
Today I cancelled everything and decided to try to work out. I took a bath with epsom salt after and rested. About 3 hours later I started with the stiff neck and headache that always comes with exercise intolerance. It gets worse from there.
I was able to talk to my physical therapist about this so that helped a bit. Am waiting to see what happens from here on out I guess tomorrow will tell me a lot. And yes yes yes. If I feel good and "overdo" it. Wich isn't really doing much except taking care of my kids I pay for days I think the recoup time is starting to be fewer days since being back on abx but I would like it to be nothing
I feel for you!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Killing the bugs is only one aspect of this issue, albeit a big one!
Most doctors under-estimate the effects of the adrenal glands on mood, blood sugar, and energy levels.
I agree mitochondria support is important, but so is adrenal support, blood sugar management (no sugar, eat fiber and protein with every meal, eat a protein-containing snack every 2 hours between meals while awake), preventing dehydration, and adequate rest.
Just my $.02...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks everyone.
I have had hypoglycemia since the 1970's, so eating protein every two hours is something I have been doing for years and supporting my adrenal gland, although I could probably do more in that area.
What amazes me is the strong mood change that accompanies the post-exertion fatigue. I mean it is extreme. So this stuff must be in my brain and whatever the exertion does to my body, it effects my brain, too.
Anyway, thanks for the encouragement to keep on keeping on.
And Keebler thanks for the links.
Posts: 1358 | From Midwest | Registered: Apr 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Keebler,
one of your links describes severe hypoperfusion of the brain 24 hours after physical exertion.
Maybe that explains what happens to me psychologically. Not enough bloodflow through the brain. Also, my eyes will look glazed over. Maybe the exertion also cause increased inflammation in the brain.
Those are great articles.
I guess coQ10, L-Carnitine, D-Ribose and magnesium would help. But, I took Co-Q10 and L-Carnitine in the past and they didn't prevent Post-Exertional problems. But maybe I didn't take enough of them, or maybe I needed the other supplements along with them..
posted
Live in NYC, so I walked about a mile today for the first time in months. I feel horrid now. I have the worst headache I've had in a very long time, and I burst out in tears about an hour after I got home. I guess I underestimated what it would to do me. Upsetting Posts: 94 | From Tennessee/NY | Registered: Feb 2012
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posted
Rivendell, I'm in the same boat, exactly. There is a very definite line for me, and if I cross it, the post exertional exacerbation of symptoms gets me every time, without exception. Besides the extra pain and fatigue that feels as though I've been drugged, I also feel the decreased bloodflow to my brain and heart. I can't think, speaking is difficult, and my respiration and heartbeat are very, very, slow. I've had a thorough cardiac workup and everything checks out. This and heat/sun intolerance (an inability of my body to cool itself) are the most prominent of my remaining symptoms and no treatment had been effective at getting rid of either.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
Rivendell, I'm in the same boat, exactly. There is a very definite line for me, and if I cross it, the post exertional exacerbation of symptoms gets me every time, without exception. Besides the extra pain and fatigue that feels as though I've been drugged, I also feel the decreased bloodflow to my brain and heart. I can't think, speaking is difficult, and my respiration and heartbeat are very, very, slow. I've had a thorough cardiac workup and everything checks out. This and heat/sun intolerance (an inability of my body to cool itself) are the most prominent of my remaining symptoms and no treatment had been effective at getting rid of either.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
Rivendell, I'm in the same boat, exactly. There is a very definite line for me, and if I cross it, the post exertional exacerbation of symptoms gets me every time, without exception. Besides the extra pain and fatigue that feels as though I've been drugged, I also feel the decreased bloodflow to my brain and heart. I can't think, speaking is difficult, and my respiration and heartbeat are very, very, slow. I've had a thorough cardiac workup and everything checks out. This and heat/sun intolerance (an inability of my body to cool itself) are the most prominent of my remaining symptoms and no treatment had been effective at getting rid of either.
-------------------- IV graduate. As of 1/10, oral Omnicef, Minocyline, Mycobutin, Levaquin, and Flagyl. Lyrica and a bunch of supplements. Posts: 123 | From Atlanta | Registered: Mar 2009
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posted
How long does this last for everyone? Tried to walk a mile the other day. Within 3 hours I started with that stiff neck and headache. Next day overwhelming fatigue bad headaches stiff neck. It has been 5 days. Usually I recover somewhat in 3-4 days.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
using any oxygen concentrator, 4-5 L/pm before & after exercise helps me a lot !!!!!!!!
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Wish I had some wisdom to add to this thread. Instead, I'm just here to raise my hand and say, yes, it happens to me too!
Posts: 274 | From United States | Registered: Feb 2012
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Wow!, I'm sorry to hear that so many are suffering like me, but also glad that you understand and that I am not alone.
Apparently, there are no easy answers. The links that Keebler provided are very helpful.
I haven't heard of an oxygen concentrator, but will look it up on the internet. But, it makes sense.
posted
I get this as well. Does anyone have any idea what pathogen causes this?
Has anyone ever gotten over this symptom?
I have a really good LLMD but I get blank stares each time I bring this up.
Posts: 74 | From NEPA | Registered: Mar 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
This has definitely happened to me. My eyes also get that sunken in and glazed over look when I am feeling this way. I over-did a few days ago this week (just a little bit more than I would normally do). You'd think I worked out for the whole day the way I have felt the next 2 days.
My mood is not as affected, since taking lithium orotate with my MD's endorsement. It is supposed to be "neuro-protective" and I really believe it is. Before taking the lithium orotate, I would have crying jags and mood swings following the exhaustion as well as the physical discomfort. Fortunately, it is just the physical stuff bothering me now.
Posts: 2386 | From New England | Registered: Aug 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I will definitely have to try the lithium orotate, since it has helped you with the mood swings after exertion. That is good to know.
Posts: 1358 | From Midwest | Registered: Apr 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am taking 5 mg 3 x day with my meals. I started at 5 mg once a day and then after discussing with my MD, increased to 3 x. There are absolutely nothing but good effects from this. No side effects at all. I hope it helps.
Posts: 2386 | From New England | Registered: Aug 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks for the dosage advice.
Posts: 1358 | From Midwest | Registered: Apr 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
It is always a good idea to discuss with your LLMD. Good luck to you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I experience this as well, but not every time I exercise. It happened yesterday when I went to the gym to do weights. I have been pretty much up to my pre-Lyme weight regimen but every now and then it's like.....it's not going to happen today.
Yesterday I started feeling progressively like my body was not going to support my workout. Difficult to explain....my muscles were fine but I had no support from anywhere else. I have felt like a bucket of yuck since.
I feel like my sternal area has developed inflammation. For some reason I want to think think this is cardiac but am not so sure. When I came home from the gym yesterday after cutting the weights short, my temperature plummented and I did have one bout of diarrhea which is unusual for me. Part of me wonders if this has something to do with my either my sodium level or perhaps hormones, ie, cortisol, or any other adrenal hormone.
GARUNNER, I feel your pain. It sounds like we experience similar symptoms. And being an avid runner and athlete before this Lyme DX, it is difficult to keep myself from not doing something. I definitely don't push myself, but what is easy to do on one day, may put me over the edge on another day. I don't get it.
Posts: 478 | From Third Coast | Registered: Feb 2011
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Koo, you explain it well. This disease is such a mystery and so unpredictable. I am still trying to do my exercise routine in the morning, but on some days, everything is more of a struggle. Even climbing the stairs.
When you mentioned that your sternal area feels inflamed, that is exactly what I have been feeling lately. I don't know if that is what they refer to as air hunger, but it feels as though something isn't right in my lungs and ability to take in enough air or oxygen.
I am sometimes afraid it is cardiac too. It seems to have worsened since I started rifampin and doxy. But when I read some of these blogs, I feel so fortunate that I can do everything I do.
I may be starting IV ABX in a few weeks. I know I will need to adjust my exercise and activities. Worried about pushing myself too hard or not enough... It will be so nice to not be sick anymore. Trying not to give up on hoping.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
This is a new thing for me, exercising had always made me feel better.
I have relapsed something, I was getting ready to go off abx after 1 1/2 years of treatment. I went on a trip while my house was getting remediated of mold and started relapsing.
I was going away for 14 days so I thought I should bring abx with me just in case. I had just finished four months of Malarone and did a round of Coartem and was only on Ceftin.
It started with pain, in the knee then the hip, stiff neck. Then came the brain fog. I started back on Azithromycin and Plaquenil. Started herxing on day 3. I herxed for 5 days.
Came home, went to my LLMD he added Mino. The herxing was so bad that I had to stop the Plaquenil. He wants me to add Rifampin, he thinks it's Bart. I can't start the Rifampin yet until I can deal with adding the Plaquenil back.
The days that I exercise are my worst days. I thought I was almost done with this nightmare.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Rc1. I am sorry. I feel the same way. I was always an athlete and run bike do weights. For the past 3 to 4 years this has been one of the most frustrating things. Exercise was always my outlet for frustration anger illness and it always made me feel better. Now it makes me feel awful right when I am super angry confused and frustrated.
The other irony is that I can physically do it (like I could go for a 3 mile run with no problem) but i onlyI know I have overdone it 3 hours after completing a workout. I have no clue while I am working out. My body can handle nothing right now over a short walk.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Yes, me too. I really hate the Jekyll and Hyde personality. Sometimes the infrared sauna can do this to me as well. And strong acupuncture treatments. For some reason though last summer I was able to do hour long road bike rides and felt great. I was taking colostrum then and I'm not now so maybe that had something to do with it. I was also making a tea with Nettle, Licorice, Fenugreek, and I was juicing a lot with things like basil, celery, lemon, lime, sorrel, cucumber. Maybe all of that really helped clear my system.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
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posted
You are certainly not alone in this. I also get the dreaded post exertional malaise. I don't get the mood swings like you do but I definitely feel awful if I overdo things. That has been one of my biggest problems/symptoms.
I wish I knew how to fix this!!
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks everyone.
I guess you have to treat the infection and address the immune system imbalance, and treat every bodily system that is affected.
Herbs and natural healing, plus antibiotics.
Posts: 1358 | From Midwest | Registered: Apr 2009
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