First, I would like to thank all of you on this forum for helping me diagnose my LD, since I was getting nowhere with the doctors I was seeing. Anyway, here is my question...
My LLMD called me 2 days ago to let me know that I tested positive for babesia. He tested me for all the co-infections 2 months ago through LabCorp, and everything came back negative, so he retested me, sent my blood elsewhere and, voila!, I have Babs.
I have no idea when I was infected in the first place. For the past year or so I have been having issues with shortness of breath, panic attacks, aching hips, and a stiff neck. Back in May I started to feel like I had the flu, along with an excruciating headache, nausea, joint pain, muscle pain, eye floaters, palpitations, fever, etc., etc.
My symptoms continued to worsen until I finally had to stop working and have been mostly bedridden since July.
I went to 8 different doctors who diagnosed me with everything BUT Lyme, until I requested to have a Lyme titer run upon the advice of one of my RN friends.
I have since had a positive ELISA and positive Western Blot, and, after some searching, found myself a wonderful LLMD, who began treating me the end of August.
He tried oral doxy which, unfortunately, made me vomit everytime I took it. We next tried oral amoxy, which I kept down but made me more nauseous than I already was.
I had a groshong put in in September, and I have been on IV Doxy (since I am allergic to Rocephin) and IV MGSO4 up until last week. (Along with other meds and supplements)
I herxed horribly every single day of the IV Doxy. Since he had me take a 5 day break from it, I feel....GOOD! I'm still a little short of breath, a little achy, and tired, but most of my debilatating symptoms are gone.
I really thought I had this awful thing licked!
And now I am starting on Mepron and Zithromax tomorrow for Babs, and I am scared to death of the herxes! Will taking Mepron and Zith increase the shortness of breath I already have?
I felt like I was suffocating when I was on IV Doxy, and I am sitting here sobbing at the thought of going through it all over again.
For those of you that have had babesia, what should I expect in the way of a herx?
I am so scared to start taking more meds.
Could someone please give me a heads up on what to expect?
Thanks!!!! Stefanie
Posted by EWT1638 (Member # 11315) on :
Hello, I took Mepron and zith. Only had occassional herx. But I lost too much weight. He took me off zith, and substituted Biaxin. No problems from meds, just herxing. Oh yeah, severe constipation!
"Results my vary" Posted by Michelle M (Member # 7200) on :
Hi Stef. Welcome! I'm so glad you've been diagnosed correctly. Had to laugh at the 'everything but lyme' diagnoses. Hah! We've all been THERE!!
Now, about the babesia treatment.
AACK. That's all there is to it. 'Taint gonna be any fun.
Some people seem to treat it without much to-do.
Key word there is "some."
But not "most."
"Most" people find it right "herx-some."
Rhymes with "irksome."
My first week, I was like, "Heck, this ain't too bad."
My second week, my head hurt so badly, I fully expected to just drop dead of a stroke as I paced back and forth moaning, no pain med touching it.
(The addition of Artemisinin assisted in producing these symptoms; it adds oomph to the treatment and is usually recommended to accompany Mepron and Zith.)
If you type "Mepron Buddies" into the search box, you will find long threads of lament.
I hope that is not the case for you. In any event, it is another hurdle to be gotten over. You WILL get over it, and will find a new level of wellness that you forgot you ever had!!! Once you're infected for a while, you can actually forget how good it felt to be normal. Don't despair, you'll get there again.
Keep us posted and hang on.
Michelle
Posted by LocalMan (Member # 11648) on :
I'm on zithro, mepron, and plaquenil for nuero lyme/babs, just finishing 2nd week of all 3, 4th week of zithro and mepron.
Probably not a good time to ask (me) about herxes...I feel like something horrible is trying to leave my body...which I sure as hell hope it is.
LM PS > stock up on peanut butter...or whatever else is high fat.
[ 16. October 2007, 04:11 PM: Message edited by: LocalMan ]
Posted by kelmo (Member # 8797) on :
My daughter had severe depression on mepron and had to stop.
You have to remember to eat a fat with it.
I think it did help with the shortness of breath, though. She hasn't had that complaint for a long time.
Kelly
Posted by groovy2 (Member # 6304) on :
Hi Stefanie
I have taken both Mepron and Zith -- they made me herx but not too bad --
Make sure to take the mepron with Greasy food it is Important - make it work better --Jay--
Posted by sixgoofykids (Member # 11141) on :
I took Mepron/Biaxin for 8 months. You might want to add Artemisia after your on the meds for a month or so. My LLMD has found that Art/Mepron work better together than either one alone.
I was treating Lyme at the same time as babs, so I don't know what was what as far as the herxing. I did get terrible night sweats, air hunger and heart palps with the babs herxes.
For the air hunger, focus on breathing OUT rather than IN, it helps some. Also, after you breath out all the air, wait a few seconds before breathing in again. You are not really not getting enough air, it only feels that way. I would hyperventilate it would get so bad. Eventually I learned the tricks I just gave you and it prevented me from having to breath into a paper bag.
After 8 months of treatment, I'm on one Malarone per day plus Art to be sure we got it all. I have no more babs symptoms, except right now I'm thinking I'm short of breath just thinking about babs. LOL
Posted by Tracy9 (Member # 7521) on :
I've been on Mepron and Zith for about 2 months now. I haven't had any major problems. I had maybe a 3-4 day herx in the second week, but it wasnt' painful; I just slept all the time. I've been okay since. I was expecting the worse and was pleasantly surprised to be wrong so far.
I have night sweats every night. I wake up with my pjs all wet, plus the sheet and pillowcase. I dont' wake up sweaty, just wet. It's kind of gross.
I think I am starting to feel a little better from the treatment. I've had some good days. I hope it continues to get better.
I dont' know how long people take this combo; anyone????
Posted by Foggy (Member # 1584) on :
Do not despair, you never know, some of us have made lots of progress on that combo.
It got me out of bed after months and gave me energy and helped w/some stubborn symptoms. Good luck & hang in there. Do a search here, lots of info on the subject.
Posted by echostef (Member # 12867) on :
Thanks everyone!
You all are so helpful. I am so glad I found this forum. There's nothing like being able to talk to someone who knows exactly what you're going through.
God bless y'all, Stef
P.S. why the fatty foods? Does it help with nausea? I took my first dose of the nasty tasting, radioactive waste-dump looking yellow sludge this morning and I am sooo sick to my stomach....
Posted by tdtid (Member # 10276) on :
Stef,
Sadly, none of us can tell you how you will react. I know that everytime I have started a new med, I do a search on it to hear what I could expect.
Some will leave you feeling pretty darn scared. I know I was....but the strange thing about it, is that when we are actually going through it, we do seem to be able to cope enough to come back and talk about it.
This is an amazing support group and it has been invaluable to have others knowing EXACTLY what I had been feeling or going through, since they have been there and many still are.
For me...knowing the worst case scenario of what some have gone through with the meds, have always left me saying..."whew...although it wasn't fun, atleast I didn't have such n such happen".
Try to keep your focus on the fact that each herx is getting you closer to getting better. I know that without this group, I wouldn't have been able to get that mind set and It's been extremely valuable.
Good luck and keep us posted on how you are doing with your yellow paint. I'm still on the zith and mepron and over the months, you do tend to get use to the taste. It's never great, but you do tolerate it more.
The fatty foods going with it are to help the mepron penetrate your body better. As far as the nausea...I found that I was living on ginger tea. Everyone has their various tricks to combat these things but GINGER TEA!!!!! Really helped me a lot.
Good luck!
Cathy
Posted by gambler (Member # 8441) on :
The first three days of mepron my breathing improved, than it got way worse. But my head hurt so much for 6 weeks I didn't think I could take another day of it. As my head pressure improved so did my life.
Good Luck,
Gambler
Posted by EWT1638 (Member # 11315) on :
Almond Butter (not peanuts which contain molds), probiotics like Theralac, 1000 mg Vit C, are all good things while you are dealing with this.
Posted by mtnwoman (Member # 8385) on :
Mepron was no problem for me.
But azithromyxin (zithromax)-- yuck. It's a rough ride for me -- just feel toxic.
I prefer Ketek over zith -- much smoother and I usu actually feel better on it. Beware of it's liver and other issues tho.
Also, I felt that I really "burned" my brain on too much Artemisinin, between 300 to 400 twice a day. Hope your LLMD gives you a lower dose.
![[confused]](graemlins/confused.gif)
![[bonk]](graemlins/bonk.gif)
![[Cool]](cool.gif)