seekhelp
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Member # 15067
posted
I tried riding a stationary bike at the lowest setting for TWO MINUTES only. I can barely walk. My legs locked up and I'm exhausted. I mean could this be ANYTHING but Babesia honestly? Am i wasting my time not hitting Babs first and hard?
My symptoms as I've said many, many times just don't line up with so many on here. My exercise intolerance seems to be horrid at any level. Something just isn't right. I'm wondering if hypercoagulation may be the issue. I'll find out very, very soon. My test results will be back this week hopefully.
It's so demoralizing to be useless and not be able to do a tidbit of physical exertion. Sweating is just a dream. I used to love exercise so this just puts me in the dumps so bad.
I always ask myself same ole' crap...is is Lyme, Babesia, thyroid, testosterone, adrenals, hypercoagulation, depression (docs think so except LLMD)? How does anyone ever know? I'm tired of this!!!!!!!!!!!!!
Every doc swears over and over and over again, it's not cardiac-related. My cardiologist laughs at me and says I just need to lose some weight. I just keep thinking to myself there is something these non-LLMD idiots must be missing and it's going to kill me. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I could not do any cardio when I was feeling bad. I could lift weights and not get that response, and I lifted weights throughout treatment, even when hubby had to come home and drag me out of bed to go to the gym .... but cardio was only okay when I was feeling better.
It's hard to tell what is the root cause of exercise intolerance. It's all just a puzzle.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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btmb03
Unregistered
posted
Seekhelp - I empathize and sympathize with you. However if you are on doxy (are you?) then I did find I was horribly fatigued on it.
Could that be making you worse in general?
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seekhelp
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Member # 15067
posted
I can't lift weights anymore either. Complete lock-up of muscles. They kill me. I used to bench press 300+ lbs. I basically can't do a lick of exercise w/o paying very dearly for it. It's scaring me.
Yes, I am on Doxy BMBT03. It's been 9 days and real hard so far. I'm not sure at this point if this drug is doing anything good. It's brought back a lot of horrible issues for me.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
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posted
Could be babesia (or babesia-like) AND hypercoagulation, because the two are said to be linked. I would treat them both.
Have you tried artemisinin? If you are taking Zithromax, Biaxin, or any of the tetracyclines, that MIGHT be enough with the artemisinin, theoretically, to at least suppress or put a dent in the babesia or babsLO for now.
Then address the hypercoagulation with high doses of Wobenzym on any empty stomach, if you can't get your hands on heparin. Heparin should probably be handled by a doc who knows what he/she is doing.
PS--didn't you see Dr. C? Did he not put you on babs meds?
PPS--i might be having what you describe seek. And guess when I get it? When I take artemisinin...so I think it's a babs herx.
Basically, when I walk, my ankle muscles and sometimes my quadriceps and calves also, lock up and feel really stiff.
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I did see Dr. C in MO. No, I've never tried Artemisinin in any significant doses. I took low-dose Malarone for a while, but it didn't do much. Looking back, maybe it did a bit as I feel worse now than when I was on it. Nothing I've taken can I say wow this really made a huge change.
Dr. C I believe has a very routine treatment protocol probably used universally for all patients. it's m guess. He treats Babs with 10-day cycles of Clindamycin/Quinine for 2 perids. Unfortunately, this is scheduled for month #3. He wants Doxy and Flagyl taken first.
I'm deathly afraid of Flagyl, but I did take 750 mg of this drug via IV in Feb-07 at a hospital and lived. However, I may not have had Lyme then. I'm not sure how long I've had it. At best, since Aug-07. At worst, I'd say since Dec-96!
Dr. C gave me the impression most anti-coagulation drugs are useless next to heparin. I'll wait to see my results before I assume that's my issue. I wouldn't be a bit surprised though.
I have some Tricycline left from AllergyResearchGroup. It's an anti-parasitic herbal remedy with Art in it. 120 mg for 2 capsules. Maybe I'll pop a few. I just feel stupid popping all the meds/supplements like candy and not even knowing what the issue is. It's scary. Also, I'm not on Zithromax/Biaxin so wouldn't the Babs become resistant to Art? My LLMD never mentioned Art at all. I wonder if he believes in it?
My fear is if something goes wrong on all the Abx, hormones, supplements, etc. that my local hospital will send me to the looney bin since all test results are normal. It's humiliating to explain. If it helps, I'm forever grateful. It's just so hard to be looked at like such a freak by 99.99% of docs.
All I know is something is way wrong. I see 400 lb+ people on the Biggest Loser reality show exercising. C'mon! I can't even do 2 minutes? The docs think I'm lazy and depressed. That's not it.
Hoosier51, I have the EXACT same symptoms as you when walking to the tee. You're describing it perfectly. The same muscles.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I share this exercise intolerance. It started slowly -- first it was only necessary to lower the duration and intensity of gym workouts, but eventually, over a period of many years, it got worse and worse. Now I cannot even stand for more than a few minutes, my leg muscles lock up. They are very tight and so weak and fill with H2O. Like you I was very strong. I used to do full squats with hundreds of pounds -- now I can't even bend down without terrible repercussions. I wish I had some answers for you as to what trx or bug, but I have no idea which bug is causing this, or if it is a combo of bugs, and obviously don't have the trx answer or I wouldn't be in this shape. All I can say is that I'm here too, and it sucks completely. I hope you find the answers.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I have went through an extremely extensive neuromuscular work-up, including a deep muscle biopsy so I know that's not the issue. All was normal.
I progressed similar to you nomoremuscles. At first I had to back off. Now a combination of de-conditioning and disease really has done me in. I hear so many say 'sweat the toxins out.' If they want to pick me up off the floor. lol.
I think it has to be something attacking RBCs and O2 deprivation. All docs think I'm crazy now and will never get it, but I am so curious how an exercise stress test with gas measuring (O2, CO2, etc.) would be now in my state.
Docs say I'm healthy as a horse. Is it mind over matter? Really makes you wonder. Regardless, I'm very sorry you're in this boat too. If we didn't love exercise beforehand, this may be more tolerable. it's ironic it hits the people who enjoy it, huh?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am in the same boat. Someone here mentioned that their LLMD said to get a re-bounder(mini trampoline) and just barely bounce on it. Said it was good for detox and I figured it would get my heart rate up slightly and I could build up my endurance.
Well I went out and got one and bounced on it for literally 30 seconds, feet not even leaving the surface; and my muscles felt like they would collapse. I got off and felt as though my legs would buckle under.
I also use to be active. I played golf every weekend and walked a lot and basically stayed in pretty good shape. So believe me I can relate to this.
I did treat for Babesia, also with low dose Malarone. That is actually when I made the most progress so far in my treatment. Since then I have been at a plateau. My LLMD seems to think all the symptoms I have now are neurological which points to Lyme.
I think all we can do is let our LLMD take the lead and use their expertise to treat us. In time we will be able to do more; but as my LLD says, even when we are well, it will take our bodies another year to recover.
It's like being in a body cast for a very long time. The broken bones heal, but it takes a long time to get your stength back.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Lymeorsomething
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Member # 16359
posted
Seek, I can tell you that I've supplemented all manner of hormones and they only have slight effect on my overall condition. All bets are off with lyme and/or co's.
Low testosterone generally does not cause "profound" symptoms.
I regularly exercised before lyme so I think that's the only reason I can tolerate it to some degree now. I do weights mostly but also some running.
Even consider simple walking. It's better than nothing.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hang in there. The Flagyl may actually make a big difference. In my opinion it works at least a little on babesia. Hubby only took 1/4 pill for a couple of weeks -- but just that little bit made his headaches and eye pain go away. And then the quinine and clindamycin protocol worked wonders. But in my opinion you need to do that for a minimum of 4 months.
The first time hubby did the quinine and clindamycin protocol he did really well for the first couple of months. Started walking and doing pushups again. Hadn't exercised for a year or two at that point. Unfortunately he started losing ground after the first 2 months.
Then we tried to move on to bartonella treatment with rifampin and things went more downhill. Over the next few years hubby repeated the quinine/clindamycin protocol 2 more times I think. It was a little less effective each time I think.
We didn't realize for a long time that his seizure-like episodes are most likely from babesia or the new protozoa found by the F lab. LLMD's kept saying his spells could be from either Lyme or bart or babs but couldn't be more specific.
If I was in your shoes I would stick to your doc's protocol for at least 6 months. If you aren't seeing improvement or are still confused as to which infections you have then I would retest with either F lab or Clongen lab based on remaining symptoms and treatment response.
If you are herxing from the Doxy then wait a while before adding in artemesinin or anything else. It should be fine to combine the art with the quinine/clindamycin.
Keep a notebook and make notes when you change meds or supplements. Once a week or so list and rate your 5 or 10 worst symptoms on a scale of 1 - 5 or 1 - 10. It will help you stay focused. Some symptoms may improve and others may show up.
It is really better not to force the exercise at this point in my opinion. Hubby initially lost 30 pounds. Took a couple of years to gain that back. Then he gained an extra 25 pounds and was overweight. Lost that plus another 5 pounds when he resumed exercise. Then last year lost 35 pounds again -- has only managed to gain 20 pounds back.
Exercise tolerance definitely seems to come and go for hubby. And it does seem to be somewhat tied in to babs treatment although not totally.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Bea, my very positive response to Clindamycin makes me think I'm fighting Babesia. I'm just concerned this 10-day two cycle program my LLMD has won't kick it. I'll be interested to see if I have the same positive response this time around as when my ID doc Rxed it last time. I believe Dr. C's Clindamycin dose is low compared to what I took (900 mg daily). Others here are saying 1,500 mg daily!
Lymeorsomething, I can't walk a 1/8 block w/o winding and my legs locking. I tried. I'll do the best I can I guess.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I know that almost everyone says to exercise, but, though this is pure speculation, I believe that by continuing to train in my early Lyme years I made myself worse. I think I created a perfect storm by lowering immunity and driving the bugs, some bugs or other, deep into the muscle tissue, and this is what made me weaker over time. Every patient is different, and I don't see too many who have this level of exercise intolerance. Therefore, if someone is suggesting exercise, however well intentioned, it may be the absolute wrong thing to do. Just because it worked for them, does not it will for everyone. Believe me I've tried the mind over matter stuff many times when I was still functional, pushing myself to do tiny amounts of exercise thinking I would progress, but each time I ended up a bit deeper in the hole.
Just as an example: At this time, I cannot even GENTLY flex one of my triceps for a split second without paying a huge price for many days. Every neuro syx will kick up, along with crushing fatigue and fog, and my GI tract, already a mess, will freeze up completely for days and days.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
Sorry about your extreme exercise intolerance. That has been one of my big problems as well. My decline from a fit and fast runner to not being to able stand for more than a few minutes or walk more than 1/10 of a mile, was fast and hard in May/June 2007. I've been sick about 2 years, in treatment about 5 months, and am just now starting to walk a little and do some light weight bearing exercise. It doesn't make me feel good, but I don't have the prolonged recovery, pain, cramping and fatigue I got before treatment. I'm not sure what med, in particular has helped with the symptom, but something's working, slowly but surely.
Re: the Artemisinin discussion, I take 600 mg 2x/day MWF and am able to tolerate that dose okay, so my LLMD is upping that to 800 mg 2x/d MWF tomorrow. I am NOT a big person.
Re; Clindamycin - I infuse 900 mg 2x/day
-------------------- 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
For me Babesia means fewer red blood cells as well as less hemoglobin and less hematocrit. I can tell before the blood is drawn because I am slower and slower on the bike while at the same level of exertion. After 3 months on Mepron I felt close to normal on the bike, and the labs looked good. Then Mepron was dropped, and so did the performance and the RBC. So back on the Mepron...
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My Babesia, IF I have it, means no alterationa to my CBC diff or any blodo test. The only thing that's elevated at tims is the CO2 number and my WBC Eos count. That's why I tirelessly wonder if Babesis is really an issue.
Well, one other issue too. I apparently have too much hemoglobin in my PLASMA. I am told my RBS are breaking down and releasing Hg in the plasma portion of my blood.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
quote:Originally posted by seekhelp: [QB] I tried riding a stationary bike at the lowest setting for TWO MINUTES only. I can barely walk. My legs locked up and I'm exhausted. I mean could this be ANYTHING but Babesia honestly? Am i wasting my time not hitting Babs first and hard?
My symptoms as I've said many, many times just don't line up with so many on here. My exercise intolerance seems to be horrid at any level. Something just isn't right. I'm wondering if hypercoagulation may be the issue. I'll find out very, very soon. My test results will be back this week hopefully.
It's so demoralizing to be useless and not be able to do a tidbit of physical exertion. Sweating is just a dream. I used to love exercise so this just puts me in the dumps so bad.
I always ask myself same ole' crap...is is Lyme, Babesia, thyroid, testosterone, adrenals, hypercoagulation, depression (docs think so except LLMD)? How does anyone ever know? I'm tired of this!!!!!!!!!!!!!
Every doc swears over and over and over again, it's not cardiac-related. My cardiologist laughs at me and says I just need to lose some weight. I just keep thinking to myself there is something these non-LLMD idiots must be missing and it's going to kill me. [QB]
Seekhelp, thats how I feel, I used to love to work out!
Now Im in pain afterwards and the next day!
What BS
Posts: 2905 | From New England | Registered: Sep 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Seek, I don't know if this will help you or not, but it sure helped me and may be worth trying.
I take one teaspoon of creatine powder in about 4 oz. water a couple of hours before exercising.
This took me from doubling over in pain after only 8 bicep curls with a 4 lb. weight, which I could not increase after over ten years of trying, to being able to easily do 60 curls, after only one week on the creatine.
The creatine also stopped the horrible lactic acid cramping pain after exercise.
I agree about not overdoing aerobics. I was dx'd with fibro for a long time, and I really pushed the aerobics as I was told to do. I believe that is why I have 3 leaking heart valves and 2 conduction disorders now.
klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I experience low endurance too. Muscles ache like I've just run a marathon when instead all I've done is walked 100 feet. Over the past year I've slowly built that up, and can do about a mile every so often. Before even trying longer walks, I spent a few months just doing stretching and Tai Chi.
My guess is it's insufficient oxygen getting to the cells.
Posts: 727 | From USA | Registered: Mar 2006
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