Exercise intolerance

Anyone else notice exercise intolerance? Is this specific to Lyme or is there a specific coinfection which can cause this? I would assume babesia but I’ve never had a night sweat

This is probably the first symptom i ever had. I grew up playing in the woods in CT, and I was a pretty solid soccer player, but I still remember when I turned 14 something happened that year and I could no longer run. I was just gassed like 5 minutes into a game. This has since plagued me the rest of my life. I’m now 37 (started getting other Lyme symptoms at 31) and I look like
I’m in great shape, 6 pack and fit, yet no matter how much I exercise my endurance never improves. A friend of mine ran the NYC marathon having barely trained and I was floored, because there is no amount of training I could do that would allow me to run even 5 miles. I’m done after a mile.

One other symptom I have is my calves burn after 2-3 minutes of running. Anyone else have either of these symptoms?

Post Edited (dcd2103) : 12/15/2019 9:21:00 PM (GMT-7)

Does it improve as the other symptoms improve? If i were to get my Lyme into remission would this improve?

The pain, head ache, rapid heart beat, brain fog/confusion, and shortness of breath all come on for me with exercise. I've been dealing with it for about four years. Did over one year of high dose antibiotics at a highly respected Lyme doc in the SF Bay area. Didn't help, just had horrible herxs, worse symptoms on the drugs.

I gave up on treatment, and have serious doubts about the ongoing active infection (Chronic Lyme) theory.

At this point I am leaning toward CFS, or Post Lyme
( same thing really) , being the cause of my symptoms rather than active infection. So I am done with antibiotics, and focusing on overall health and passage of time to get better.
Unfortunately all these conditions are not well understood, and we have to make our decision based on theory alone.

Post Edited (Lostcoast) : 12/14/2019 7:02:53 PM (GMT-7)

Yea I’m over the active infection thing too. Mine is def autoimmune at this point, just trying to figure out how to heal my gut and repair my immune system and hoping everything improves with it

And it did go away with successful treatment for me obviously. Intersting you mention pelvic/hip issues LostCoast. I was just talking about that same thing with Astro in the "Victory" thread.

Only you know your fitness baseline, and if its way off then that could be a problem especially coupled with those other symptoms you just mentioned.

Exercise itself is very curative so when you are unable to do it its a frustrating catch 22 for lymies.

I remember going to an ID doc and while he woudnt write a script for ABX he did simply recommend "targeted excercise" Joseph Burroscano says a a weight lifting regimen is essential to beating Lyme. So maybe theres something to that.

With me, proper treatment led to a return in my desire to go the gym, so i wasnt going to the gym struggling trying to get well by working out, i got well and then my natural desire to work out came back again if that makes sense.

dcd2103 said...
Anyone else notice exercise intolerance? Is this specific to Lyme or is there a specific coinfection which can cause this? I would assume babesia but I’ve never had a night sweat

Sounds like you're still iffy on the whole autoimmune thing and still wondering if babesia or some other coinfection may be playing a role. That's good and it's still good you think autoimmune plays a role. You can still treat with supplements like Turmeric and CBD oil if you want to target autoimmunity while using antibiotics.

I personally think, until you try a persister cell drug like dapsone or even disulfiram, it's going to be hard to know if you have a lingering coinfection. I know Coartem and Daraprim are very strong antiparasitic drugs as well against Babesia and they don't have as severe side effects as the quinines which can damage the brain stem.

Have you done any of the more sensitive labs out there like Igenex or Fry Labs? I know they're costly, but it's a start.

Well if you're having exercise intolerance, you do realize that both babesia and bartonella infect your red blood cells?

For the last 4 years of the 8 years of dealing with chronic lyme, I'd say I was pumping iron no problem, still getting a pump in my muscles, living pretty heavy weight.

It wasn't until my Bartonella came out of dormancy after I put babesia in remission or knocked it back, that I finally lost that pump. I would lift weights, I wouldn't get a pump at all and I noticed lifting weights also caused my bartonella to flare.

Well after treating bartonella for the last 4 months, I'm starting to gain my pump back in my muscles when I lift weights as my bartonella neuro symptoms also decrease.

dcd2103... Bottom line, I think you're probably still suffering from the 3 B's just like a lot of chronic lyme patients and due to not treating them aggressively or with some of the persister cell drugs, you've really never got past that plateua or hump, and that's probably why you're not experiencing the deep severe herxes. I mean maybe you do have a permanent autoimmune condition, but I wouldn't give up so easy. As a drug like disulfiram can target both, a persistent infection while addressing the autoimmunity. Maybe that's why Dapsone works for some autoimmune patients, because I've heard Dr. H also say that drug is easy on the microbiome as well. I'm not positive, but what I am hearing are some patients reaching remission with drugs like dapsone, disulfiram, pyrazinamide when no other drugs worked...

dcd2103 said...


I’m in great shape, 6 pack and fit, yet no matter how much I exercise my endurance never improves. A friend of mine ran the NYC marathon having barely trained and I was floored, because there is no amount of training I could do that would allow me to run even 5 miles. I’m done after a mile.

I think that's great you got athleticism going for you, Dr. B specifically states chance of remission is slim unless lyme patients work out.

said...
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary,” states Lyme specialist Dr. Joseph Burrascano, Jr. “It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.”

Anyways, it's up to you which route you want to take, I suspect you wouldn't be on this forum if you didn't want some help, rather than just making this thread and throwing your weight around, claming "proof chronic lyme is just autoimmune..." It's ok, I think that thread is going to breed some really good discussion, it already has!
https://www.healingwell.com/community/default.aspx?f=30&m=4170949

Drugs like disulfiram, dapsone, and pyrazinamide weren't around when I contracted lyme 10 years ago, I'd say make use of these drugs, at least try one and see where you stand... Sh!t we didn't even know much about biofilms and persister cells back then, not even stevia or xylito, how these fake sugars work on biofilms...

I would first personally would try dapsone and whole leaf stevia extract, then see how you respond...

dcd2103 said...


One other symptom I have is my calves burn after 2-3 minutes of running. Anyone else have either of these symptoms?

On the other hand, that specific doesn't sound like babesia but bartonella. Have any twitching in your calves as well? Also sometimes jolts or electrical shocks in your heals or feet? Bartonella can also cause that, along with sore feet/heels.

Neuropathy is common with Bart...

Post Edited (Charlie55) : 12/15/2019 12:43:27 AM (GMT-7)

35 here. Was a personal trainer when I got sick and had just made the first cut to be on Ninja Warrior. To say I was active is an understatement. I got hit with exercise intolerance so bad if I walked up a flight of stairs I would have weeks of seizures, psychosis, confusion and months of increased derealization. Some of these have never recovered from 5 years ago.

Anyway. As I read over the years I figured it must be babesia, I also had a positive blood stain for it.
Years or treating bartonella and babesia never helped at all.
What I've come to conclude is that it's likely a combination of oxidative stress causing mitochondrial inhibition and mast cell activation. My guess is the increased oxidation makes the mitochondrial issues worse.
What helps the most for me so far is keeping my histamine intake low and taking copious amounts of antioxidants. Namely camu camu powder (vitamin c), quercetin and ALA. Also glutathione IV's help.
At the end of the day I believe my issues are solely autoimmune now and I killed off any latent infections years ago. I don't know the correlation between AI and oxidative stress but I know it's there. Fix those and I believe the source will be reversed, until then high dose antioxidants and a low histamine diet keep me stable

Kind of interesting, Dr. P just had a presentation that micafungin(another antifungal like Diflucan) may work on Bartonella, kind of near the end, I guess John Hopkins is currently testing this drug against bartonella.

https://www.facebook.com/lymebook/videos/806945233086958/

Walking, thats very interesting. That all sounds exactly like me, to a T, spot on. This has been one of the great frustrations of my life, because I've always been very into sports.

Where did you grow up? Are you sure it's lyme that's your problem? Ever test positive? Were you bitten as a child? Reason I ask is because this story sounds exactly like mine, and I've wondered this for a while, is lyme the cause of this awful symptom, and did I actually have Lyme in my early teens and just didnt know it, or is it some other issue? I always come back to Lyme, and the fact that I probably had it then but didnt get sick until my 30s when my immune system gave way. I may never know for certain, but if someone else w/ the same exact story can trace theirs unequivocally back to lyme, that would give me a little more certainty.

dcd,

I grew up in the coastal south - far from Lyme endemic areas. I never had a known tick bite or bullseye rash. My Labcorp WB was positive on band 41. Igenex was positive 41 and indeterminate 39 (borrelia specific). DNA Connexions positive for borrelia and ehrlichia. In Buhner’s book, he noted that Georgia is the epicenter for ehrlichia.

The fact that I also tested DNA positive for ehrlichia and have dozens of symptoms, both neurological and musculoskeletal, that correlate to all 3 b’s, makes me feel confident I have Lyme. However, as far as symptoms, I relate mostly to bartonella and somewhat to babesia.

Like you, I will never know for certain if I was born with any of the infections or if I contracted them all at one unknown time or if I contracted them independently or if there may be other issues at play.

My life altering symptoms started suddenly at age 39, but I had other issues before then. I have learned a lot by reading others’ posts, especially those who know precisely when they were infected and describe their body function before and after the bite and after recovery. It’s quite phenomenal how I can relate to so many symptoms. I don’t think I have ever known what it feels like to have a truly normal body. Maybe someday. There’s always hope.

The same thing has crossed my mind - when did I actually get Lyme or whatever it may be. In my case, i do believe Lyme started it all because, looking back, I noticed my right rib cage area "sinking in" a little. It wasn't to the point anyone else would notice, but I did and just thought I had a rib pushing out more.

The loss of body fat has been really bad as it has taken place throughout my body. That is why I believe it is Lyme with B. afzelli. When I had it under control for about 18 months, all the body fat loss stopped. As I've mentioned before, all doctors will ask if "Have you had an HIV test?" My answer is not up to "Yes, 6. It's Lyme." That started at one, then another doctor did a second, third, etc...

I do get lightheaded when I push exercising much more than walking faster for 15 minutes, doing about 125-150 pushups, 4 sets of curls and light shoulder work. But there is no fat around the muscle.

Now, it is even more confusing as I know there is an autoimmune component to it, along with the high EBV results with IgM and IgG. If I push myself too much, the afternoon fever ends up an all day, most of night one.

One more note: Like WBF, I now realize I had immune system issues, even when I was competing nationally in the sub-masters 800 and 1500. Looking at old journals, I see I would always end up sick if I really pushed a 10 miler. Every time.

So, the question about having it for entire life is a good one. And like WBF, I grew up in Georgia and my first 5 years were in Charleston, SC. Not exactly Lyme covered back then. We didn't even have mosquitoes in this part of Georgia when we first moved here.

@charlie55

I took bartonella herbs and antibiotics for almost 3 years with no benefit. Coincidentally, bartonella is the only infection I've tested positive for. I did 1.5 years on Buhner's protocol and had some intense die off but it never lead to any improvement. I then saw Dr M in Bethesda (the world renouned bartonella specialist) and treated for a year with clarithromycin and rifampin/rifabutin. No improvement. He did, however, bring up mast cell activation which i believe is a much larger part of my problem. That and autoimmunity. After almost 5 years of treating infections now there's no way they are still the forefront of my problems. Even 500mg of disulfiram does nothing