I don't remember getting cramps like that from Mepron .... call the doc's office and report the symptom.
You might also ask if you can or should take magnesium supplements, if a deficiency is the issue -- Lyme bacteria use up magnesium, and cramping can result. If the doc doesn't say 'no, don't take it', then try some -- I (even now) take a variety that has three forms of magnesium in it and it works very well -- I have read that any variety ending in "-ate" is most absorable; mine has magnesium citrate, orotate and aspartate in it, but everyone's system reacts differently.
I was on Mepron for babesiosis and didn't have any problems, but again everyone is different, which is why keeping the doc in the loop is important.
I'm new here. I've had Lyme disease for over 18yrs. Around 1994, I was diagnosed with EBV, but had tested for positive for everything, including Parvo and Mono. Like most people, I was told to avoid stress and sent on my way. In 2001, I ended up with a ton of bulls eye rashes all over and was put on Doxy for 1 month. The past 2-3yrs, I've gotten progressively worse and am now seeing a LD specialist since Aug, 12. Compared to last summer, I feel so much better, but still have a long way to go.
Meds I'm on now:
all twice a day on Mon, Wed, Friday
Thursday and friday, I add Flaygll
I'm curious if anyone has had reactions to Mepron. I'm also getting toe cramps and I'm taking Magnesium twice a day (in addition to tons of other suppliments) My tongue and throat and tongue go numb for hours after I take it, my lower back hurts, but the worst is this shortness of breath I'm having if I do anything more than walk across the room. Thought it was my lack of exercise, but was off the meds for a week and didn't these issues. Just started back on Monday and the symptoms are back. I'm not 100% sure if it's the Mepron, but after reading this post, I'm beginning to wonder.Just wondering if anyone else has had similar issues with Mepron or any of the other meds I listed.
That's quite a list of meds you are on all at once. Wouldn't surprise me if you are having side effects and/or die off (as the dying bacteria collapse, they release irritating chemicals).
It's good you're seeing a Lyme specialist, but there is no one single way to treat, and what works for one person may not for another ... you may be sensitive to some of it, or to the conglomeration of all of them at once.
What does the doc say? If you're not due for an appointment in a few days, I'd call the office and report your symptoms jic.
As I think back to taking Mepron---I didn't have a drastic reaction to it. I remember 'drastic' reactions or herxes so .........
Flagyl was the absolute worst drug for me. I Just read a few days ago about a well known Lyme activist and her experience with tinidazole (supposedly a substitute for Flagyl) and it sent her to the hospital!)
A potpourri of drugs is often prescribed by some otherwise good llmds. (My bias showing there, sorry). That just adds to the interaction soup, I think. But if you're feeling better----??
Another personal bias of mine----- about your shortness of breath (SOB) Have you been investigated for pulmonary embolisms? I blamed my SOB on Babs and it was PE instead, which darned near killed me.
Thanks for the welcome Jackie and Cave. :D Funny how people react to different meds. IMHO, Flagyll was one of the best meds I've taken. I've heard you either love it or hate it.
I've called and emailed the clinic, but they can take up to 24hrs to respond, so no word yet. Don't know if I've been checked for PE (need to find out) I've had 2 x-rays within the last 4 months, EKG, and a slew of labwork. My BUN test was elevated this week, but not out of range.
As far as the amount of meds goes, I've been rotated on so many meds since August. Always 4 different kinds, every other day, and Flagyll on Thurs and Friday. Two week rounds with one week off. O how much I look forward to that one week off! lol Worst herx was on I.V Rocephin. Sent me to the E.R. Months of that, twice a day with no break, but felt incredible towards the end. Felt great for almost 3 weeks, then slowly started feeling bad again. So more testing, and found out I'm also pos with 4 co-infections, so we're killing (knock on wood) each one, one at a time. I'm one of the lucky few as far as insurance goes. So far, they haven't denied any claim yet. My LD doctor is known for being super aggressive. Honestly, if I had to trade 10-20 yrs of my life for this treatment, I'd do it in a heartbeat........IMHO, just not enough to be alive. At least not for me.
Thanks for answering so quickly,
About the PE------ I'm not meaning to suggest that you have DVTs (deep vein thromboses which are often the precursors of PEs) but if you do decide to look into the chance----- a D-dimer is the blood test to determine if (maybe) you have DVTs. The legs or upper extremities are the most common places for them ----- but not the only place to find them.
An ultrasound can be done to look for them (usually only often only after a D-dimer blood test shows the possibility (or swelling or other symptoms) and they can almost always locate them, if there. Depends on the tech.
If a person is on birth control pills or post-menopause estrogen replacement the risk is there for getting DVTs. It's complicated and if a person wants to know more I can give some urls. :)
After you've been sick for a while (over 20 years) believe it or not, I want to herx because then I know I am having a die off and something is working. I know I will feel like crap for a few days but then the activated charcoal helps me a lot. I follow Shallers suggestion of taking 6 at once.
You're right. On the one hand I'm glad when I get a herx. Instead of feeling sorry for myself, I've developed a mantra, "Die bugs, Die!!!" lol Sounds stupid, but for some strange reason, it does help. You have 2 yrs over me being ill. I don't think I could take going 20yrs. No way! This new doctor was my last resort.
The symptoms from this round of abx is a bit different. I don't feel sick per se, With the exception of lower back pain, I only feel bad when I'm active......... just never thought of it as a herx.
Dr. called back. Stated all my symptoms. Her response? "Is it unbearable?" I said no, just worried I was having a reaction to the medication. In a nutshell, it seems my symptoms are not rare. She said to keep going unless it becomes unbearable. Something seems to be leaching minerals causing my foot cramps. I have liquid minerals in the fridge which I took today, and the cramping stopped within minutes. The back pain? Who knows? I'm doing more physically than I have in years, but that's not saying much. Only have one more week of this, then it's on to Bartonella regime. This is the one I think I'm going to really benefit from the most.
I need to research activated charcoal. Forgive my ignorance, but I assumed charcoal would absorb the meds along with other things. Where I got that from, I dunno.lol Although I've been sick for so long, it's only since August that I was diagnosed. I'm so far behind you guys in research and experience with this thing. Thanks for the tip. I'll check it out.
I know I'm a little late to the conversation, but I thought I'd add that I have had chronic shortness of breath, thanks to Babesia, for well over 2 years. I didn't get my Babs diagnosis until early last November. (I had taken anti-Babs herbals nearly a year before with no effect. That, along with 3 negative tests led us to put a possible Babs diagnosis on the back burner.)
Every single medication and herbal for Babesia I've taken since then triggers worsened shortness of breath or air hunger. I've learned to ease into everything as sometimes starting with a full dose triggers scary gasping and difficulty getting enough oxygen. I've found my Babesia herxes to be worse than my Lyme herxes.
If you feel you just can't get enough oxygen and breathing requires full concentration, don't hesitate to go to the ER to get some oxygen.
Thanks for your response. I really think the Mepron caused the shortness of breath. There is nothing scarier than the feeling of not getting enough air. I'm off of it this week and have had no shortness of breath. I'm so sorry to hear you've been suffering with this symptom for 2 yrs. I don't think I can take it. The anxiety it causes when going through something like that........... my pulse goes to over 125.......... just scary. I'm trying to convince my doctor to treat the Bartonella now instead of the Babesia, then go back to it later. lol I don't think she's gonna go for it but thought it couldn't hurt to ask.
That's a very good question. I've never had asthma so I don't know if it's similar or not. My chest doesn't get tight but it is hard to breathe and my pulse goes way up. I'll give the clinic a call and see what they say and let you guys know. Thanks for the suggestion. :D
I just looked up inhalers online, and some of them are STEROID based (thus not good in a Lyme infection, suppresses the immune system), while others are bronchodilators, but I couldn't tell from the page I was reading what they are made of. fyi!!
I encourage you to go through with the Babesia treatment now. I didn't start mine until 11 months into my Lyme treatment, and I think the reason my Lyme recovery went slower than I expected is because of the untreated Babesia. I think I would have felt better faster if we'd tackled the Babesia up front.
The Mepron itself doesn't cause the shortness of breath. The Babesia does. Killing Babesia seems to make it worse for a while and it happens for me whether I take Malarone (which has Mepron in it), Alinia, or an herbal. (How many infections are there that actually get worse when you treat them??)
I have yet to find a good medical explanation for exactly how the Babesia causes shortness of breath. One theory is that the Babesia infected red blood cells clog up the tiny capillaries in the lungs. Killing Babesia can damage or destroy the red blood cell which can intensify the symptoms. Lose too many red blood cells and you get anemic, which can be serious. (Blood tests are good to check for this.) I wonder if it also clogs up tiny blood vessels in the brain. That might also explain the headaches and brain fog so common with Babesia.
Magnesium has a signficant benefit for me when my chest tightens up. That's your body's response to not getting enough oxygen. The magnesium helps relax the tight muscles and eases breathing. I have found that when my breathing is uncomfortable, leaning back in a recliner or lying on my back makes it noticeably easier. Getting stressed or having conversations during that time makes me worse. I used to take Magnesium with each dose of my anti-Babesials meds. Now I just take Magnesium in the morning and mid-afternoon and that seems sufficient. I feel my chest tighten up in the afternoon if I forget to take it. It needs to be a good one (Mg Malate, Orotate, or Citrate), not the cheap stuff from big box stores.
I was originally put on an inhaler when my shortness of breath started. My doc thought it was allergies. She gave me the one without steroids. It helped a litte, but I had to use it often. It helped less and less over about 4 months to the point I got really breathy and was gasping. That's when my doc said she thought it was asthma and gave me a shot of prednisone and some powerful anti-asthma meds. A few days later I ended up in the ER with even more difficulty breathing. They gave me more prednisone, but didn't give me any oxygen because my oxygenation was always high 90's. I wish I'd had the oxygen. I bet I would have felt better. I really went down hill after that.
I went off to a pulmonologist who switched me to an inhaler with steroids. It definitely helped me breath better. It dilates the breathing tubes making it easier to take in more air. I used them the maximum # of times a day for a month or so until my pulmonary function tests showed I didn't have asthma. The inhaler only made my breathing easier for a couple hours, so I knew it wasn't the answer. (I didn't know about Lyme yet.)
I do not know if the steroids from the inhalers stayed in my lungs or got into my blood stream and circulated. The steroids do raise the heart rate. They're supposed to reduce inflammation in the lungs, easing breathing, but I don't know if they can suppress the immune system overall. If someone has actual asthma and needs them to breath, that's obviously important in spite of Lyme and/or Babesia.
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