Hey everyone. I apologize in advance if this is a long post.
I have been treating Babesia now for 4 months. I had terrible experiences with Zith that landed me in the ER twice each time I tried taking it. My tachycardia would increase and I would get horrible pains around my heart, pain in my left armpit, down my left arm, etc. I would panic and think heart attack. Nothing was ever found at the ER when they checked my cardiac enzymes etc and I have also had 2 full cardiac workups. My cardiologist said my heart is healthy. He gave me a beta-blocker that I take now when things get bad with my heart.
So because I have such issues with Zith, my LLMD has had me pulsing Mepron only for 3 weeks on and one week off. I am now just finishing month 4 of Mepron and I do not see much improvement in my Babesia symptoms. The night sweats do stop when I take my week off now and my Babs rash on my upper arms is almost gone. That is the only improvement I have seen. When I am on the Mepron, the night sweats are horrible.
I asked my LLMD for Bactrim DS at my last appointment because I wanted to be on something in addition to the Mepron to hit the Babs and also to possibly hit Lyme or possible Bart.
I finally got brave the other day and tried the Bactrim DS. I cannot tolerate starting out on large doses so I have to take baby doses every other day and build up. I took 1/4 of a Bactrim DS and felt fine that day. The day after I had horrible depression. I took another Bactrim last night and today I have pain around my heart again that sometimes goes up to my left shoulder. It almost feels like a sore muscle or something. I have not noticed an increase in my tachycardia, just these stupid and strange chest pains around my heart. My muscles in general feel more achy and sore. Also, I feel a lot of nerve-type pains zipping through my head that I felt at the onset of my illness. I am sort of headachy as well.
I recently started getting joint pain too which I have never had. For about the past 3 weeks now, when I lean my head back, I can feel pain going down my spine. The muscle around my neck and shoulders feel stiff and sore.
My Bart tests have been negative but I know that does not mean a thing. No rashes other than my Babs rash on my upper arms since the onset of my illness. My main symptoms are fatigue, tachycardia, palpitations, tingling in my face, constant low grade fevers, night sweats, chills, skin feels hot to the touch all the time, occasional blurry vision, anxiety, muscle twitching, and CNS symptoms such as a sun burn feeling on my arms, etc. I am also still dealing with a ton of yeast.
I am not sure if I do have Bart and the Bactrim could he hitting that as well or what is going on. The pains around my heart right now are not near as bad as when I was on Zith but they are a concern.
Could the Bactrim be causing the pains around my heart, etc? I really want to be able to tolerate this drug. Also, does any of this sounds like Bart?
Thank you!
Posted by dguy (Member # 8979) on :
I get chest pains too, but when taking clindy rather than bactrim. IMO it reflects cardiac involvement in our illness. My cardiac workup was fine too, but that's not surprising since such workups typically do not include checking for infection.
For me stressful situations bring on the cardiac pain and palpitations. As might be expected, the heart is busy dealing with the treatment, then adding stress becomes too much. It's certainly of significant concern since anything involving the heart has the potential to be life threatening.
IMO the bottom line is to reduce things like stress, or if that's not possible, scale back treatment. I've been forced to reduce abx dose, and that has reduced the chest pain, though it slows treatment progress. I imagine it goes without saying to be very careful with your heart.
Posted by Hoosiers51 (Member # 15759) on :
Hmmm...I can't really comment one way or the other on the heart symptoms because I have never had too many issues with that, despite having bart, babs, and lyme.
I did herx really strongly recently from Bactrim DS. I believe my herx was either due to Bart or Lyme, or both. That is what yours makes me think of too....sort of a grab bag, where it could be either one or both. The joint pain to me screams Lyme...but who knows.
Do you have psych symptoms at all? Because you didn't mention any psych symptoms flaring from using Bactrim. I don't want to look too much into that, but in a weird way, that tells me it could even be Lyme flaring, since I would expect a Bart herx to involve psych stuff. (of course, I'm sure sometimes it doesn't....)
Lyme is said to love the heart muscle too. So who knows, maybe what you are experiencing is Lyme. But don't rule out Bart either.
Hope that helped some....those are my (slightly disorganized) thoughts. I guess just go slowly with it and do what you think is safe.
I will tell you that my herx symptoms on Bactrim have gotten dramatically better in the second week, so it hopefully won't last forever. Be careful and slow with it though. Good luck! Posted by CD57 (Member # 11749) on :
You asked if any of your symptoms sounded like bart. To me, the anxiety, twitching, and the CNS symptoms sound like it.
Posted by 2roads (Member # 4409) on :
What does a babesia rash look like, and where is it commonly found?
Thanks,
2roads
Posted by BlueCheetah (Member # 18626) on :
2roads,
My Babs rash, and many other people I know, have a rash on their upper arms that sometimes goes up over your shoulders and on to the top of your back and neck area.
My rash looks like red pimples varying in sizes. Some are small and some are larger. Some of the larger ones get white heads on them almost like a pimple. Mine is almost completely gone now. I know other people get it on their chest, etc.
You may want to ask Groovy. He knows a lot about Babs rashes.
Posted by 2roads (Member # 4409) on :
Cheetah,
That is very interesting.
My son has on and off what sounds like that. It is a rash that is on his upper arms, crossing over his back and sometime chest.
When he had that really bad cough 1.5 years ago, it was really pronounced. It comes and goes in varying redness.
They look like little pink, slightly raised dots, some are less raised like blemishes. Is this what you have???
Thanks Much,
2roads
Posted by BlueCheetah (Member # 18626) on :
2roads,
Yep, that is exactly what I have. I have never had it on my chest. It has always been on my upper arms and sometimes on my upper back. Many people have described the exact same thing to me.
My LLMD was clueless and told me to go to a dermatologist. After reading here and talking to others with Babs, I learned that I did in fact have a Babs rash. I have had it since the onset of my illness in 2008.
It does come and go. Some will go away and others pop up.
A Babs rash can be itchy or it can be painful.
I have tons of coughing too, especially when I am herxing on the Mepron.
Your son's rash really does sound like a Babs rash to me.
Please feel free to ask me any questions!
Posted by scared08 (Member # 14695) on :
BlueCheetah,
I'm no expert on what sx is Bart., Babs., or Lyme, but I can tell you that Bartim kicks my tail!!!!!!! I am pulsing it right now and I can't imangine being on it daily.
The only thing that I wanted to add is regarding you thachycardia and chest pain. Have they ever COMPLETELY checked your hormones??? As in Adrenals, Pitutary, etc...???
I have HPA Axis failure, POTS, and Adrenal and Pitutary issues assided from the axis. Since I have started meds. for it, I don't have as much chest pain, tachy, or such a low B/P. Just a thought.
Just a side note-----any time you are having chest pain a long with L shoulder, arm, neck pain (actually it could be either side or both), any jaw pain, upper back pain YOU should pay attention to it! Especially if it's accompanied with nausea, sweating, dizzy, etc.....
Not to allarm you, it's just that we all hvae these sypmtoms here and there----but---I would really hate to see anyone assume it's my lyme, and it be something that needs medical attention right away. OK
Take Care
Posted by 2roads (Member # 4409) on :
Thanks Cheetah!!!
That is very helpful.
I do want to ask if you have sweats at night. He used to, but does not anymore. He's actually quite cool to the touch.
He had a positive antibody for Babs at around two, but was never treated.
He is taking Bactrim single strength twice a day with Zith. He does not seem to have the problems you mention. He's tolerating it well, except the coughing is much worse and the phlem too.
Thanks, and sorry for being so self-absorbed with my son....it's driving me
2roads
Posted by BlueCheetah (Member # 18626) on :
scared08,
Bactrim just may kick my tail too! I was not able to tolerate Zith at all, even in small doses so I am going slow on the Bactrim. I have only been taking 1/4 of one every other day. I know it can hit many things so I do not want to get very sick again and have another episode like I did with Zith.
I have never had my hormones, adrenals, etc. checked. My LLMD...well let's just say it not the best. I did have my TSH, Free T3, and Free T4 checked but that was it. I think she should have done the reverse T3 and T4. I have been wanting all of these tests done and I think I am going to demand that they be done at my next appointment. I also want my vitamin D and B-12 checked. That has yet to be done.
I do have POTS. When I stand my BP drops and my heart rate increases. I am on Toprol XL for this. It does help somewhat.
Thank you so much for mentioning all of this. I think I do need to be tested for these things. I would love for these heart symptoms to go away!
I have had tachycardia on and off since the onset of my illness. Then when I started Babs treatment, it got worse. The Zith really put it on me. I thought I was having a heart attack many times and went to the ER. I think I have been to the ER over my heart 10 times in the last year. They always do an EKG, etc and nothing is found.
I have also had 2 full cardiac workups with 2 halter monitors, 2 echoes, and a stress test on the treadmill WHILE I was very symptomatic and tachycardic. They did not find a thing. Just sinus tachycardia.
I will make sure I get these tests done you mentioned and see if anything is found. Are all these tests blood work?
Thanks so much!
Posted by BlueCheetah (Member # 18626) on :
2roads,
You are very welcome!
Yes, I have horrid night sweats to the point of soaking the sheets every night. I never had them before starting Mepron. My skin is always warm to the touch and I always run a low grade fever.
I am glad your son is tolerating the meds well. Children seem to get over this and handle the medications much better than us adults. My coughing has increased as well as the phlegm. It is horrible sometimes but I think that is a good sign that the meds are working.
Hang in there, he will get better!
Posted by adamm (Member # 11910) on :
I got joint pain on Bactrim as well. Stopped when I went off of it (and back on the Ceftin), though.
Posted by 2roads (Member # 4409) on :
I just reread your message....my lyme brain.
It sounds like you get sweats when using mepron, but not regularly anymore?
I am chasing my sons diagnosis as are you....you're just coming from the opposite direction. He was pcr pos for Lyme and Bart at age2.
The tests aren't good, so not much help if your negative.
I would say you have lyme and Bart.
My sons regiment was given by Doc J for Bart. If you are responding with such sensitivity, I would say you likely have Bart too. What about a course of Levaquin???
I know you'll have to watch the heart symptom, but maybe you need that kind of help now rather then later.
There's single strength Bactrim you can take if you get tired of pill chopping.
Zith works on lyme too, but I think Bactrim is a better blood- brain barrier crosser.
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