Hi I was given a good idea from another member...to start a thread for those of us treating Babesia. I start Mepron tomorrow..woohoo!
I did take Mepron and zith 250 last July for one week...LOL...and you wonder why I have it back now...unreal ignorance. Anyway, would anyone like to join me here. We can post support ideas and information about herxing. I could use all the help I can get. I am scared about burning worse but I need to get better. I will be on zith 250, mepron paks twice a day, and my lovely daily IV Rocephin I need some herx buddies..LOL.
Luv Monica
Posted by tdtid (Member # 10276) on :
Hi Monica,
Wish I didn't have to say I was in this same boat but I too am taking mepron. I'm not on your IV, but I'm doing Mepron, Zith 500 and Doxy 400 and Diflucan at this time. Just barely started the Diflucan but he felt that after over a year of antibiotics, it was time to clean some stuff up.
I have been on the Mepron since May and I just saw my LLMD this last week and thought I was going to be done, but he's keeping on for atleast another month...so onward I go.
Not overly fun drug, BUT it is potent and works well for reversing some symptoms, so good luck to you.
Cathy
Posted by lymednva (Member # 9098) on :
I'm on Mepron, clarithromycin, artemisinin, doxy, and Plaquenil at the moment. I've been on the Mepron for 5 months now. While I am seeing improvement I am still having symptoms of Babs.
Posted by Monica922 (Member # 13496) on :
Hi Cathy How are you feeling now? I hope you are doing much better.
Posted by Monica922 (Member # 13496) on :
Hi Lymednva I am glad you are seeing some improvement. This co-infection looks like a monster to get rid of when it gets hold. The blood tests also seem just as cruddy for detecting it as Lyme.
Posted by CatCCC (Member # 14262) on :
Oh I am glad to see this, I have a question or two... I'm a Babs Buddy, or a "suspect" anyway.
Has anyone had a rash on the palms of their hands and soles of their feet while they were taking Mepron? I was taking it with IV Zith, but had to stop because I couldn't keep anything down on it (not to scare you, Monica!) I wondered if it was a Babs herx of some kind.
I start quinine in about an hour... anyone want to tell me just how horrible it's going to be? (I read that 76% of people have major side effects... eek.)
Posted by sixgoofykids (Member # 11141) on :
I was on Mepron for 9 months along with Biaxin, Plaquenil, and Artemisia (plus other med for Lyme). My LLMD has seen greater improvement if you add Artemisia than with either Malarone/Mepron or Artemisia alone.
Now I am on 1 Malarone per day, Artemisia, Plaquenil, and Lariam (once every five days). I was having few babesia symptoms, but the Lariam would cause me to have air hunger on the day I took it.
Recently the air hunger has finally stopped. I also have not had night sweats at all in about two months .... except when I recently had a cold.
I have been treating babs for almost a year ... and like I said, I have few, if any, babs symptoms now. In the beginning, the herxes were tough.
Now it's the bart herxes getting me!
Posted by Munch (Member # 11323) on :
Hello Babs-Buds!
I'm so tired of being an unwilling host. It's time to evict these uninvited house guests.
I'm allergic to sulfa so Mepron is out. I'm on Malarone + Zithromax. I did one 30 day cycle and of course the symptoms came back. Just started a 90 day cycle a week ago.
During my first 10 day cycle of Clindy + Quinine I got a rash on the palms of my hands and tops of my feet only. They were little blisters filled with liquid. It wasn't eczema. They were no where else so my LLMD thought it was a herx.
Does anyone struggle with their hormones? I am having a horrid time getting my levels up into normal ranges. My blood levels are low, saliva and urine are high.
You name the hormone and I'm on it (HGH, estrogen and testosterone pellets, DHEA, melatonin, compounded hydrocortisone, progesterone, and compounded T3.
My LLMD thinks the hormone resistance is due to Babs. Is this something that goes away with Babs treatment?
I'm also on the core Buhner protocol. I've got some Red Root tincture on order but can't find Boneset tea. Does anyone know where to buy?
I respond strongly to Artemisinin. Has anyone tried that? I'm on heparin now so am holding off on ordering another bottle as I've heard Art can be a blood thinner.
Posted by Monica922 (Member # 13496) on :
Thanks, I still cannot figure out what symptoms are from what? Lyme, babs, ? I have intense burning everywhere, jaw pain, eyes blurry, numbness around body, intense feelings of cold, and almost constant tooth pain now. The intense night sweats have stopped but I still get hot at night sometimes. My weight also seems to have stabilized but I cannot gain any weight back. I also get weird blotchy patches when I take a bath or shower? I am starting to think I am just a mutant..LOL. Oh, the daily IV pricks in my arm also make me look like a drug addict....very attractive. I am not sure what Mepron will target..but I hope it helps get rid of some of these!
Posted by Monica922 (Member # 13496) on :
Hi Munch I have to take synthroid because I also have hypothyroidism/hashimotos...but I had it since I was 17. I am 40 now. I think my levels went wako before the treatment but okay so far. I did not think Mepron was a sulpha drug? They gave it to me again and I am allergic to sulpha drugs...scary..LOL.
Posted by sixgoofykids (Member # 11141) on :
Malarone has Mepron in it ....
Mepron is giving to people allergic to sulfa drugs .... that is what came up with a quick Google search.
Posted by elle (Member # 7721) on :
I took mepron for several months and I have an extreme sulfa/sulfite/sulfate allergy. Mepron was fine.
My doc gave me an iron supplement and I had an allergic reaction. Posted by Monica922 (Member # 13496) on :
Thanks I have severe sulfa reactions also. I start the Mepron today..woohoo! Gosh I hope I am not a herxing nightmare! Off to my IV..yuk.
Posted by Monica922 (Member # 13496) on :
Wow..now I know what you mean by bad herxes. Please remind me that I am not going to die..wow. I will be on lots of ativan this week. How long will this last? I must have babesia really bad!
Posted by CatCCC (Member # 14262) on :
I'll leave it to someone who has more experience treating Babs than I do to answer your questions, since I am only on my second month, but it sounded like you needed a little support right away, so...
You're not going to die- but you are going to kill that Babesia!
Hang in there! I had a rough time with my first dose of quinine last night, but I know I'm in good company- thanks for starting this thread, Monica! Posted by Monica922 (Member # 13496) on :
Thanks, how is your stomach doing on the quinine? Thanks for the support. I took an ativan, waiting for it to kick in Posted by CatCCC (Member # 14262) on :
So far so good for my stomach, thanks for asking! Hope it's not TMI, but I throw up all day every few days anyway, so I probably won't notice too much unless it REALLY upsets my stomach!
I did immediately have weird symptoms though (fastest I've ever had side effects!)- my face got red and hot, I got a headache and vertigo, insomnia, and all of a sudden the design in the floor tiles started moving! Bizarre!
Hope that Ativan kicks in for you soon! I took a Xanax last night, but I think still objects being in motion might call for a Klonopin this time...
Keep me posted on how you're doing when you're up to it! What herx symptoms are you having?
Posted by Monica922 (Member # 13496) on :
Yeah me too with the immediate hot face, burning ears...and more burning in my back and legs. I really think I need to go out for the FLAME Guy on the Fantasic Four...LOL. But I also have a headache, muscle twitching (that I have not had in a long time), same tooth pain, and the vertigo crud...my other favorite. I may end with a Klonopin also...
Posted by CatCCC (Member # 14262) on :
OOH I had muscle twitches on Mepron, too! They were worst in my sleep, my boyfriend (who takes care of me) thought I was having seizures! I haven't had that yet with the quinine, but since I've only had one dose I figure the "best" is yet to come, haha.
Curious about your tooth pain- I have two teeth in my lower jaw that are VERY sensitive- is your tooth pain similar?
I put my head in the freezer to cool off my face. Kinda gross but it felt NICE! Posted by Monica922 (Member # 13496) on :
Yeah the tooth thing is like a constant dull throbbing in my gum area next and it centers around 4 teeth...I know nuts.
Posted by CatCCC (Member # 14262) on :
How strange! I hope you get some relief soon!
I still don't really understand which symptoms I had that made my doctor switch from Lyme treatment to Babesia treatment, actually.
I'm sure it's already available on the Medical board somewhere but I'm starting to feel sick to my stomach and I don't think I have the energy to investigate it...
Sigh, maybe I AM going to be throwing up noticeably more on the quinine! (Sorry, gosh, I've only been posting here for two days and I'm probably already grossing people out!)
Posted by Monica922 (Member # 13496) on :
I do not think many people know what causes what...different for everyone. I wish someone would tell us that answer Hang in there. We will help eachother get through this crud. Have you lost a great deal of weight....I sure did. I look like a skinny, swollen eyed nightmare..LOL.
Posted by CatCCC (Member # 14262) on :
LOL that's pretty much exactly how I would describe my appearance! Just add old lady nightgowns to the visual image, any other clothes hurt too much, haha!
Yes, I lost a *little* weight... 35 lbs, haha. I was only 130 to begin with, and I'm 5'5. Between being completely emaciated and having eyes that are always dilated (and my Dracula-esque pallor- family has started calling me "Vlad"), I look like I'm a heroin addict. It's cute, LOL.
What other symptoms do you have? I'm not excluding anyone from my interest, for the record-- Monica and I just both seem to be using the same means of distraction at the moment!
PS: And I'm glad we're both using the same means of distraction, Monica, because I am... Posted by Monica922 (Member # 13496) on :
Funny, since I have to get the IV everyday....literally stuck fresh everyday, I really look like a heroin addict. I also lost 20 pounds and was not big to start with. I am 5'6''. My worst symptom is the burning I get all over...all over..insanity.
My sed rate is still 36...way too high. So I still look red from the inflamation. The other symptoms are fatigue, muscle pain, occassional joint pain but this is not bad compared to the rest. I have it in my neck and face, jaw and teeth. I have bad Neuro crud. The IV has helped but it is going SLOW. The blurry vision and vertigo feelings also make me nuts. I used to have really bad heart palps and tremors but they are not bad anymore....same with headaches....not like 7 weeks ago.
It is interesting that the air hunger has come back with the mepron...hopefully only for a short time. I am also having majr cold/hot stuff going on. I do wonder how long you herx off this before it stabilizes. Mepron must be a strong drug. My kids say I am eating paint medicine.
Posted by CatCCC (Member # 14262) on :
You have to get a new IV every day? Not fun! Neither is the paint medicine, and that's exactly the same thing I thought about it-- don't get it on anything because it's as hard to get off as paint, too.
Glad to hear you're seeing some improvement... my heart got better after my first month of treatment for Babesia, I had palps also prior to that.
All of a sudden I'm in a fog and I can't remember how I was going to finish this post...
Posted by Munch (Member # 11323) on :
Sorry, didn't mean to confuse anyone. I just assumed the reason why I didn't get Mepron from my LLMD was because of sulfa.
I'm allergic to corn and yellow dye. Sacchrine can also contain corn. Most meds are a problem for me due to the dyes. Most of the time I wash off the coating or swap out capsules for dye free ones.
Is Mepron better than Malarone? Is Zithromax necessary with either one?
Posted by sixgoofykids (Member # 11141) on :
My LLMD told me that Mepron was stronger than Malarone. He switched me to Malarone later when many of my symptoms had subsided.
Mepron doesn't have yellow dye, it's just naturally pretty! It does have saccharine.
Either Zith or Biaxin is required with Mepron to prevent resistance.
It's not uncommon for air hunger to get worse when starting babs treatment. Mine was almost gone, but when I started Lariam, would flare up on days I took it. I think it's finally gone (the air hunger).
I've finally gotten so I don't look so gaunt .... I've put on 5 pounds, which is all I needed, and I think two of those have gone to my face, LOL. Humaworm helped with that .... I had a tapeworm! I'm now gaining weight and eating less!
Posted by AZURE WISH (Member # 804) on :
I am 5'5 and 105 lbs..
I started taking protien supplement and trying to eat more protien than I was before....
it seems to be holding my weight finally. so at least I stopped loosing.
Babs has been worse than lyme for me in terms of herxes and whatnot.
I think having had it untreated so long has made it more difficult to get rid of.
Posted by There*Is*Hope (Member # 14294) on :
Hi all the Babs Buds,
I had lyme, bart, and babs. Now I am (maybe) down to lyme. The maybe part is that I might not have ANY of the three. Hurrah.
I read some of your stories, not all. So many! However I do remember all of the symptoms you list plus not being able to take a deep breath for months without bone-shattering coughs. And yes, I had those 104 daily temps for a long time too.
My treatment for babs included zith and mepron while still on IV rocephin. Also took flagyl in there. So many for such a long time, don't remember exactly what went with which. However,YOU DEFINITELY GET BETTER.
I got bit the week of 9/11, ironically enough. Still under treatment. However, I am currently going to graduate school in a really rigorous program. I just finished the first semester with straight A's. HA. And yes, I had the blown up inflamed brain that so many of us have.
The reason I tell this is because we all need these stories when we're in the dregs that disease and treatment create in our bodies. I remember just hanging in and hanging on for what seemed to be forever.
In regards to babs, the treatments didn't work initially. I started doing a daily meditation in which I sat and pictured each system in my body, starting with the marrow on my bones, the muscles, the nerves, the blood highways, the organs, the skin even, and imagining each cleansed, then each healthy. (This was after I'd been on mepron, etc. for months and still had babs.)Two months after starting the daily meditation, I no longer tested positive for babs and haven't since. This example exemplifies how powerful each of us are in regards to our own healing odessy.
To me, this crazy journey has been and continues to be an amazing opportunity to truly discover what each of us is capable of. I am in awe of not only the resiliancy, but the grace I have been fortunate to witness in each person I've met dealing with tick-borne illnesses.
So kudos to each of you. Also, hang in there. Oh, I did some yoga each day too, which really helped. Often it consisted of lying on the floor and doing simple stretches while noticing breath (the dvd's from Gaiam were good for me since I'd never done yoga until I got sick). Incredibly helpful. Also helps with detoxing all the goo out of the body.
I haven't posted in such a long time, that I had to re-register, but had to respond to this. I remember how great it was to go into the doctor's office and see those getting better and hearing those stories, especially when it was so difficult to get through each moment that slipped into a minute, hour, day.
Hope this helps then.
Tracey
Posted by HaplyCarlessdave (Member # 413) on :
Here's GSK's info on 'malarone' and 'mepron': (they appear to make both). Warning- these file are pretty "thick" reading for evcen an ex-lymie, much less a current lymie!
Yes, the dose you get of atovaquone in a typical dose of 'malarone' is less than the dose of atovaquone you get in a typical dose of 'mepron'. But 'malarone also has proguinil hydrochloride. In the time I could take looking quickly through these, I couldn't find an exact amount of the dosage of atovaquone in a typical dose of "malarone", but I think I recall (though that doesn't necessarily mean it's odds-on!)it was 250mg, compared with 750mg in a typical dose of 'mepron'. But again, atovaquone isn't all "malarone' has in it.
But please do be aware of the effectiveness of artimisinin! Certain uh, entities, of course do not want this widely known- artimisinin is at least an ORDER OF MAGNITUDE less expensive than atovaquone in any form!
note--I took both artimisinin and 'malarone'. I started artimisinin a month before 'malarone' and it was already clear that it was helping me immensely before I took a single dose of atovaquone! I took two rounds of this combi, and after that, it was time for tinidazole (and clarithromycin, and some other things) for a couple months, and from then on, I've been just about abx-free with no hint of relapse as yet (going on at least 4 years) DaveS
Posted by Monica922 (Member # 13496) on :
Thanks to both of you. It is so important for us to know there are people that have gotten better!
Posted by Monica922 (Member # 13496) on :
I have a stupid question...Dr. C asked me today if I was having an allergic reaction to Mepron because my face was burning. How on earth would I know? I really am asking this honestly....is there some way I would know the difference between a reaction and a herx?
Posted by CatCCC (Member # 14262) on :
Tracey, thanks for writing your story-- I was supposed to be starting my PhD this fall and instead I can't even focus long enough to follow a DB thread-- it's so reassuring to know that my brain will return to normal (relatively speaking!)
Monica, don't you hate it when doctors do that? I can't swear to you that you're not having an allergic reaction, and if you have other symptoms of one you should definitely hit the ER, but I am having facial flushing on quinine that I don't think is an allergy, and I had rashes, fevers, and all kinds of weird symptoms when I was on Mepron... I just stuck it out until the end of the month and then switched treatments.
When in doubt, be safe, but I am going to wait and see what happens with my flushing. Also, if you have a home-health nurse who sees other Babs/Lyme patients (mine does), you can ask his or her opinion. Might not help, but it put my mind at ease last month!
Hang in there! Posted by Monica922 (Member # 13496) on :
Yeah no doubt. I took another ativan I have the same crazy symptoms I had before but my face is definitely flushed more...more lovely ear burning..etc etc. We need to find out where Dave purchased the artemisia...and how much he took. I was crying a bit more today but I am okay right now.
Posted by wiserforit (Member # 9732) on :
Just discovered you guys!
I've been easing into Babs treatment. Started on one pediatric pill every other day. Went up to one pill every day with 250 Zith every third day. All this with high dose Amox (about 5600 mg. daily).
After about four weeks of the every day Malarone and the every three days Zith, I'm suddenly freezing every night, depressed, spacey and forgetful, indecisive and really, really sleepy. Top it off with weight gain and racoon eye circles.
Oh, and then there is the bizarre, disturbing dreams that happen during too much sleep. Also anxiety. Also gassy feelings.
So lovely.
At this rate, I just don't know how I'll ever get up to an adult dosage! I also notice that Bart symptoms are rearing their ugly heads.
Vats a girl to do?
Best to you all,
wiserforit
Posted by Monica922 (Member # 13496) on :
Welcome wiserforit. What do you mean by Bart symptoms...what are those? Thanks
Posted by CatCCC (Member # 14262) on :
Umm... has anyone else had hallucinations with quinine?
Apparently I almost got taken to the ER last night because I thought the closet doors were in motion and the floor tiles were waving... I was also throwing up. I feel fine (relatively speaking) this morning, but I just wonder if this is normal?
I hope everyone is doing well!
Posted by wiserforit (Member # 9732) on :
Hi --Thanks for the welcome!
I have "crunchy tendons" on the tops of my feet, sore soles, and sore shins -- particularly in the early a.m. and the late p.m. I've been told that those symptoms can signify Bartonella. I tested IND for Bart, but we're assuming I have it along with the Babs.
I also get really paranoid thoughts and worries during neuro herxes, when I know I'm not thinking right. Haven't hallucinated (hope I don't), but I get mentally blotto and suddenly/intensely blue-feeling.
This is not a fun roller-coaster, but we're riding the heck out of it, eh?
Best,
wiserforit
Posted by Monica922 (Member # 13496) on :
I get those those same symptoms...I tested negative for Bart?
Posted by Monica922 (Member # 13496) on :
Curious, what is the normal herx length for this wonderful drug? WOW this is NOT fun.
Posted by Monica922 (Member # 13496) on :
Are we having fun yet...my headaches started back..my other presonal favorite.
Posted by wiserforit (Member # 9732) on :
Hey there --
Don't know if there is such thing as a "herx length" since it's so different with everyone.
I feel like since doubling my Malarone and adding Zith that I'm living one big herx. Fatigue, depression, headache, confusion and spaciness....
We know that something is stirring, eh?
Best wishes to you,
wiserforit
Posted by Monica922 (Member # 13496) on :
Yeah I am in herx wonderland. I started with weird muscle type pain today. It feel almost like a ran 3 miles yesterday...weird because I dis not have it before. The burning is mostly in my head (ears) and back right now. The muscle pain in the top part of my legs. I know..I am a mutant!
Posted by Monica922 (Member # 13496) on :
OKay well I freaked out last night crying. These are pretty severe herx reactions. Has anyone had this to Mepron? Th new muscle type pain is a nice addition in my legs..NOT.
Posted by CatCCC (Member # 14262) on :
Monica, was the crying for no apparent reason, or because of the pain? I had both on Mepron, I was completely miserable, I couldn't take it.
Please be careful. If you start having consistent feelings of hopelessness, stop the Mepron.
I tried to stick with it and the emotional trauma nearly killed me (literally). I'm having other issues on quinine (aggression and irritability, plus hallucinations), but it's more tolerable than the Mepron emotionally and physically. My pain level is much lower.
Babs Buddies, I think Monica needs a hug...
Hang in there, and talk to your LLMD if things get too bad. There ARE alternatives to Mepron and all kinds of things you can take with it that might give you a little relief.
Cat
Posted by Monica922 (Member # 13496) on :
Thanks Cat. Yes the pain kicked off the crying but I could not stop...cried more this morning. I took some ativan and stopped finally. It just gets overwhelming. What do you do to help the symptoms?
Posted by CatCCC (Member # 14262) on :
I have a pain management specialist. She's a duck, but so far she has been willing to help. I take 30mg Avinza (long-acting morphine) in the AM, and 15mg Morphine Sulfate (short-acting) in the evening.
I am very resistant to pain meds (meaning they don't work well for me), but the heavy duty narcotics do take the edge off enough so I am not curled up in a ball sobbing quite so often.
I also have Xanax and Klonopin on hand for if I can't calm down once I start. For whatever reason, when I get upset, I get the idea that nothing will calm me down, so I have advised my boyfriend, who takes care of me, just to stick one down my throat if I can't stop crying.
If you have someone at home who can do that for you, I find it lessens the duration of episodes by putting the burden of deciding to take something on someone who is not having an emotional crisis.
If you are not on narcotic pain meds because you worry they'll make you too high to function, don't worry about that. They work like Ativan-- if you need them they will help, without making you high, and a good pain specialist will start you out on small doses to find a good balance for you.
Also, I am not big on supplements, but I do take Magnesium when I get muscle pain. It won't do much on its own for serious pain, but I do notice a difference in cramping when I take it.
Finally, a heating pad sometimes soothes my aches a tiny bit. It's not going to stop a bad herx, but if you do everything I suggested, the extra little bit might help.
Hope that helps, you're doing the right thing by asking for help here-- and if you have kids, a significant other, or even a dog at home, I am a firm believer in hug therapy. When things are really bad, I make sure I get lots of hugs... won't help the pain, but it will help with handling it.
If nothing works, don't hesitate to call your doctor-- it is their job to help.
Feel better and let me know if you have other questions or need anything!
Cat
Posted by dbourne (Member # 13833) on :
Hi Everyone, I am looking for a great group of support so I may jump in with you if you don't mind. I have been on Malarone for almost one month as well as 3 grams of amoxill. I was bit almost three years ago when I was 8 months pregnant and staying with family right outside of Lyme, CT. My doct. in Oklahoma told me Lyme was extremely easy to kill and not to worry about a lengthy treatment through pregnancy or any risk while breast feeding. I know "NOW" that is not the case, found an LLMD in DFW and am on the road to recovery. You should see me though. I am the spaciest, most forgetful Kindergarten teacher. My 22 kiddo's have gotten used to find the teachers keys, books, etc... Right now we are in the process of finding our 2 1/2 year old a LLMD and getting IgeneX testing for her. This is going to be such a long journey...
Posted by Monica922 (Member # 13496) on :
First thanks Cat.
Welcome to our new buddy, oh my goodness a Kindergarten teacher and a 2 year old. That alone would knock most people on their butts I am a professor and it is also tough on me. I am glad you are finding and LLMD for your child also. My 8 year old also tested positive for Lyme last month.
I have never been on Malarone but I will tell you the Mepron is knocking me for a loop. I cried all night from mental wakoness and just plain pain. It must be killing something though. I live in CT so I was bit here also. This is a really great support group of people. It has helped me more than I can say.
Posted by Monica922 (Member # 13496) on :
Hey Babs buddies. I am hanging in...how about you? My sed rate went down to 15..woohoo! But my rbc and hematocrit were low...probably borderline anemic..oh well. It will be 8 weeks on the IV Rocephin this Sunday. unreal.
Posted by wiserforit (Member # 9732) on :
Hi Monica,
8 weeks on Rocephin, wow! Congrats! The anemia part isn't so great, but then again this is a strange balancing act.
I'm having a rough ride right now. Had 2 days of flat-on-your-back dizziness after four days of dark depression, now I'm merely anxious and physically wobbly. Must be the incremental increase of meds, because I haven't felt this way for over a year.
After years of Lyme you'd think you'd get used to the rough patches after some better days, but I'm always surprised by them! It's sort of weird to swing from being social and involved to self-isolating during the herx times. Makes me crazier
And so it goes... hope everyone is improving and having lots of non-herx times,
wiserforit
Posted by Monica922 (Member # 13496) on :
Hi Wiserforit I am watching the snow forecast for CT. I have become the weather goddess now that I have to travel for the IV everyday. I always worry the snow will be too bad to get there Posted by wiserforit (Member # 9732) on :
Got your snow shovel handy?
Hi Monica!
What town do you drive to for your IV? How far is it from where you live?
I used to drive a mere 23 miles for my IV; I lucked out because I had IV from April thru July -- no snow!
My kids are praying for a snow day. They believe that if they wear their PJs backwards, freeze a spoon and put it under their pillows, and flush three icecubes down the toilet -- voila -- a snow day! It worked last time...
I'll be thinking salted and sanded road thoughts for you!
best,
wiserforit
Posted by dbourne (Member # 13833) on :
Good luck on your snow day. As a teacher I lead the class in snow day chants and celebrate them like a 5 year old would! Unfortunately, down here in Texas we don't get many snow days. Although if the weather report even looks like a possibility of snow flurries the school district goes on high alert. People stock up on food like crazy all for our tiny 1/2 inch of snow.
How long were any of you on oral med's before you went to an IV. I am in stage 3 Lyme and my doctor still has me on orals. He said as long as the Amoxil and Malarone were helping then their was no reason to start an IV. Also, how expensive is an IV? He stated the possible expense as a reason to avoid it for as long as possible. Right now the Amoxil is extremely cheep while the Malarone is more expensive.
Posted by Monica922 (Member # 13496) on :
Hi I was on orals for a short time in July. Then by the time they diagnosed me with Lyme...I was really bad and went right to the IV in November. We really did not have that much snow. I worried all night that I would not be able to get to the IV..which is about 40 minutes away. and the snow was fine (3 inches maybe).
Posted by CatCCC (Member # 14262) on :
Hey Babs buddies, I posted this in Medical Qs... but if anyone here can help I would appreciate it. My Mepron herx was quicker than this, but not nearly so painful... I don't know what to do, the pain has taken the fight out of me. Please help if you can, I'm so desperate.
"I hope this doesn't come off like I'm complaining, but I am feeling 100% worse all of a sudden, and I am scared I might have the flu. I have done a bunch of searches for Babs threads and they did help but I guess I'm looking for more personal support.
My old LLMD dumped me last month, and I don't see my new one until Friday. I know we're not doctors giving medical advice here, but some anecdotal expertise would REALLY help me out.
I am clinically dx with Babesia. I was initially on 500mg IV Zith q24, with 1 tsp. Mepron 2x/day. I couldn't tolerate Mepron (constant vomiting), so I switched to 900mg IV Clindamycin q12 /with quinine 1x/day this month.
Yesterday my temperature started climbing. My normal body temp is low, around 97.3, and it hit 99.7 degrees last night. I was in so much pain that I was crying, despite taking extra Morphine. It hurt for anything to touch me, even my pajamas.
This morning, things have not improved. I feel incredibly... for lack of a better word... sick. What I want to know is, does this sound like a normal Babs herx, or do I need to start popping Tamiflu (my immune system isn't so great so I have a "just in case" Rx).
Mepron made me very sick very quickly, but it was more vomiting than this fever/pain combo. It just hurts so, so much, I am trying to work through the pain but even with the Morphine I am beside myself. I have been in pain for so long, I'm just so tired of hurting.
Is there anything I should/should not do for this? My dad is not willing to pay for herbs or supplements, so I am looking for some temporary home remedies, I guess.
Thanks for taking the time to read this and respond; it took all the strength I had to write it.
Cat
PS: I can't tell if this made sense or not. I'm sorry, I'm having trouble thinking clearly through the pain. My whole story is posted in General Support under "New to LymeNet, 20 yr. Lymie" if you want more info. I just can't type more here right now."
Posted by Monica922 (Member # 13496) on :
Welcome JB What did they put you on? Please tell us your story. Thanks
Posted by Monica922 (Member # 13496) on :
Hi Cat How are you doing today, any better?
Posted by CatCCC (Member # 14262) on :
Hi Monica (and buddies),
Unfortunately, I seem to have gotten worse overnight. I am still in enough pain that I can't think straight, my fever is up to 101.5 and is steady there, and I'm really out of it.
Also coughing/chest pain and gigantic lymph nodes.
My nurse did labs today, and she'll call me tomorrow to give me my blood counts. I also see Dr. L in Armonk, NY on Friday afternoon.
I hope he can make it better. Until then, anyone who is having serious pain and difficulty might want to check out the thread "Babesia Buddies and former victims... please help!" for LOTS of great tips on herbs, supplements, meds, and home remedies for Babs herxing.
I really appreciate you asking about me. Are you hanging in there??
Posted by knshore (Member # 13451) on :
I want to join! I am about to start Mepron (assuming we can get the stupid, and I mean STUPID insurance company to get the co-pay lower than $594 for 21 days of it!)
Well, my story...I am 17 and was bit 10 years ago at sleep away camp (sigh...I hated that place anyway! ) I had a bull's eye rash but we didn't know what it was, so even though I got the "flu" a couple days later we didn't think they had anything to do with one another.
I ended up getting my period for 90 days and needless to say I got severely anemic. Well, after trying every iron supplement, my PCP told me I needed IV iron because I wasn't absorbing anything. Then, we thought I had Celiac disease, but we still don't know.
Then I was hospitalized in June last year because I had a disc bulge that left me bed ridden, six days later and 2 cortisone epidurals later I was on my way to a summer full of PT!
LONG story short, I ended up at an LLMD about a month ago. I tested positive for babs and Igenex negative for Lyme, except the two bands which are only positive because of Lyme were positive. I have been on Zith since then and like I said, I am about to start Mepron.
We are hoping that babs is the cause of my anemia, because after not having had a period in 6 months, I still got severely anemic again (so low, my hematologist said he has NEVER seen #'s so LOW in his career! )
My question to all of you is, I read somewhere that Mepron can CAUSE anemia! Ahh! My hematologist would FLIP if he found out! Does anyone know if there is any truth to that?
Looking forward to having babs herx buddies! Posted by Monica922 (Member # 13496) on :
Hi Cat I seem to have also hit a wall in the last three days...burning, headache, and lovely crying. I will have to check out that thread you posted.
Hi Knshore...welcome. I was also anemic before I started the therapy..and run the line again for anemia now. I do not think mepron causes anemia but they babs sure can.
Gosh I am so sick of this...so sick of this!
Posted by dbourne (Member # 13833) on :
Hi friends. I hope everyone had a great day, I know I am looking forward to this weekend and the idea of maybe taking a nap at some point. Please know that I have been thinking about all of you and the pain that some of you are in. Try to stay strong and positive, pain is such a terrible thing.
I have always heard the a Herx means that you are really attacking the disease at it's core and that although painful a Herx is a rather good thing...
Has anyone also heard this bit of information? I am a little concerned because I have never experienced a Herx. The medicine just seems to make be better and give me a false sense of security. Before we know it the disease is back and stronger then ever. Should I be concerned? My LLMD told me that the reason we haven't killed the disease is that I wasn't treated strong enough and for long enough. Any thoughts. I am on 3 grams of amoxill and malarone.
Thanks for being here for me, we made an LLMD appointment for my 2 year old with Dr. C. She will be visiting him on March 11.
Posted by AZURE WISH (Member # 804) on :
dbourne- if you are getting better from treatment that is good!! some people are lucky and don't herx they just get better. Posted by Monica922 (Member # 13496) on :
Hi JB Yes the mepron is very expensive. Here in CT they charged over a thousand for one month supply. I agree with you about the abx, I also intend to tough it out until I am better. Trust me before the LLMD, I thought I was going to die anyway.
I have now been on the IV for almost 9 weeks...whew! This is my second week of mepron. The first week was much worse. I just hope it gets better and better. I am really sick of being dependent upon other people to help me do simple things. They have been wonderful but I want my life back.
I let the woman go that was helping me get the kids on the bus. It was costing me a ton of money. The kids hated having her here and it was making me feel even worse. I intend to crawl to the bus stop if necessary Posted by Ann Theisman (Member # 14427) on :
Hello fellow babes!! I'm new here. I have babes and bart and Lyme. They are treating babes and bart first. I'm on mepron,zith 250mg,cipro 1,000mg,hepron shots 2x daily, b-12 shot 3xweek, arteminsin and other supplements. I never know what does what to me. It's very interesting reading what you have to say.I have a lot of ear ringing which has not been mentioned. Weird dreams! Some nights it's so hard for me to fall asleep I just give up. I would love to have conversation with you. Anny out
Posted by Monica922 (Member # 13496) on :
Hi Anny I have to take ambien or I cannot fall asleep even though I am exhausted at night. I also have really weird dreams...vivid...at least three times a week. Some are just down right scary. I had the supersonic hearing and ear pain for months before I was diagnosed. Now my ears just burn inside? They have stopped burning all day and now it comes and goes. You are on a ton of stuff so it should kill all the BAD bugs. Monica
Posted by wiserforit (Member # 9732) on :
hi everybody,
I was gone for a few days, but I'm back. Had to go to my mom in Florida; she has Alzheimer's and broke her hip. I stopped taking the zithromax so that I could fly there and be helpful to her.
Now I'm back and need to start up again...
I wish you all godspeed on this rambly old path.
Catccc, we have the same LLMD!
Best to all,
wiserforit
Posted by Monica922 (Member # 13496) on :
Welcome back. I hope everything is okay. I have been trying to clean my house today...what a mess. It is not so easy to clean when the neuropathy and blurry vision kicks in. Last week I had really bad headaches so I am glad today that I have not had a beauty headache...I cannot function at all with them.
I posted a question in the other section but I was wondering if any of you had a high sed rate. Mine was off the charts 9 weeks ago..87. Now it is 22. Thanks
Posted by CatCCC (Member # 14262) on :
Hey everyone, I disappeared too, because my "low" fever of 101.5 turned into a fever of 104.0! We tried everything we could to get it down, but in the end, I decided I had to stop taking the quinine.
Did anyone else run such a high fever for days on end with burning pain in every joint? I was too sick to even get on and ask! (And don't get me started on what I was hallucinating by the time my fever hit 104...)
I am still in extreme pain all over, but at least the fever has dropped back a bit. Since Clindamycin is a perfectly good medication for treating Lyme, I am staying on it until I see the new LLMD in NY next week-- I had to cancel last week due to my fever.
Anyway, I'm off the Babs part of treatment until further notice-- that was either the herx from H-E- double hockey sticks, or I had some kind of allergy to quinine.
wiserfort, I am looking forward to meeting your doctor-- I hear he is the Cat's Meow! I'm sorry to hear about your mother's hip/condition; my grandmother had Alzheimer's, and I took care of her when she had a broken wrist once... I am willing to bet you need a good long nap before you start back on the Zith!
I'll keep checking in... hang in there, everyone! Posted by Monica922 (Member # 13496) on :
Hi Cat Quinine is some nasty med. I am glad you stopped taking it. You will have to let us know what Dr. L puts you on next week. Feel better.
Posted by Lymester (Member # 5848) on :
for all of you
Lisa
Posted by CatCCC (Member # 14262) on :
Thanks, Monica (and for the hug, Lisa!)-- I really don't understand why my LLMD put me on quinine and then didn't even call to check on me, let alone tell me how dangerous it was! Thank goodness for my fellow Lymies or I'd be in the hospital right now!
I hope you're feeling a little better... I saw that you attempted to clean... I'm sort of a neat freak myself and no one else can do it to my satisfaction, so I can sympathize-- it is awful to try and do it with this disease, but I feel even worse if I don't, personally...
Just make sure you don't put anything in a "safe place" if you have a headache. I put my Xanax in a "safe place" two months ago when I had a migraine and found it in the pocket of an old mink stole last weekend. File that one under "Lyme Moments!"
I'll be sure to let you know what Dr. L does... let's hope it's something that works, I don't want to have any more fevers that prompt my mother to come and stay with me for five days. Posted by Monica922 (Member # 13496) on :
How is everyone doing? I had some stomach issues so they put me on some kind of acid pill..protonix? Anyone heard of that one?
Posted by CherylSue (Member # 13077) on :
I think I may be a babs buddy. Seven and a half years ago I came down with the flu from hell. 103 fevers for 10 days, drenching sweats, fried brain, terrible weakness/exhaustion...etc. I was in the hospital and released with a "postviral syndrome." It took me a year to recover to 95 % and for the next 3 years led a normal life. I relapsed again with a high fever, recovered in a year, and had 11 mos. of funtioning 90% when I relapsed again. I've been in a relapse for 18 months. Does this sound like Babs?
In October I was diagnosed with borreliosis from the Igenex western blot and went to see Dr. C in MO. He put me on amoxicillin to start, herxed like crazy, and pulsed this abx for 2 months.
In December Dr. C put me on doxycycline. I felt better in a couple weeks with energy (10%) and with a cleared brain. However, after 6 weeks, I've plateaued and seem to be sliding backwards. Fatigue, occasional burning skin, disruptive sleep, and flulike malaise still plague me. Does this sound like babs? Sometimes I get mild sweats at night.
Dr. C suggested I try 1/4 tablet of azithromycin and work up. (I herx on zith, too.) Can zith work on babs alone, or do I really need mepron? Dr. C did mention in my office visit that mepron was overrated. He uses clinimycin and quinine, but after reading the above, I don't think I want to go that route.
Thanks for you input. I suspect I have mild clinical babesia that keeps the lyme active. I don't have joint pain, air hunger, cough, or chest compression. Just a lot of fatigue and malaise.
CherylSue
Posted by CaliforniaLyme (Member # 7136) on :
Hi you guys- just wanted to share my experience and also give a heads up about G6PD deficiency.
I was treated for 2 years for Babs with Mepron & zithromax, the last year with Artemisia as well. I haven't had Babs symptoms since then, which is nice. So it can take a long time!! But it is worth it!!!
G6PD Deficiency ***************** If you are NOT allergic to sulfa drugs you don't have this. This is the most common human enzyme deficiency and if you are lacking it, certain drugs can trigger hemolytic anemia or other symptoms compatible with it.
Because Babesiosis can cause hemolytic anemia, active G6PD deficiency can be confused with and diagnosed as seronegative Babesiosis.
In some people, even aspirin can trigger symptoms! There is undoubtedly some CFS which is actually triggered G6PD.
This is a silent condition wihch is triggered by things, certain drugs, certain foods, and it is also triggered by ILLNESS!! So just getting LYME could bring it out fulminantly.
So if you are allergic to sulfa drugs or have reactions to fava beans, get tested. It's a simple blood test.
The G6PD deficiency is higher in certain populations because (they believe) it developed in relation to malaria exposure geographically.
So if you are African in heritage, 12% have this, but have a milder form.
If Arabic, Mediterranean, Greek, Asian, South Asian, Jewish, 5% or so have it and have a more severe form in general.
Northern Europeans have it less percentagewise but it is not unknown- there is an Irish variation, a German variation... ANYWAY, anyone can have it, although it is MOSTLY MEN and more in those genetic backgrounds. If you are a woman with this you will have been more likely to have a history of miscarriages and pre-eclampsia.
If you have this and treat with anti-malarials like quinine, you can trigger hemolytic anemia, which would to someone who had Babs or who thought they did, look like a bad Herx but could be lethal. So that's why I am giving a heads up.
Doc James Sch has it in his book on Babs and there is info about it all over the internet if you are interested in learning more.
EXAMPLE: ILLNESS can trigger G6PD deficiency as well as drugs, so let's say Alessandra X gets Lyme. if she is G6PD deficient, she will manifest with dark urine fatigue anemia and would very likely be diagnosed Babesiosis!! BUT if she is G6PD deficient, when the Doc treats her, she may have a severe reaction, even hemolytic anemia!!!
SO... off my soapbox, just thought I should post it here- Take care folks, Best wishes, Sarah
Posted by Bugg (Member # 8095) on :
I, too, am taking babs meds (mepron, zith, and art) What do you guys do to relieve the tightness in your muscles, especially in your legs and back? To me, it feels like I have loads of lactic acid built up all over my body. Everything just pops and cracks and feels so tight. Any suggestions for relief? Thanks!
Posted by lymie_in_md (Member # 14197) on :
Hi Bugg,
The following is a link to a product which helped me for tight muscles in my legs, both calfs and thighs. It is a product recommended by my doctors office, its called nutracid, it reduces not lactic acid but uric acid. For some reason this has a dramatic affect on muscle stiffness. I take 2 pills two times a day. Let me know what you think.
Posted by AZURE WISH (Member # 804) on :
For anyone else, does the babs seem to be getting better sooo much slower than even the lyme when treated seperate?
A snail or senior citizen turlte would be many miles ahead my progress it seems. Oh well, hopefully i can feel like the living again someday...
Bugg- I use moist heat heating pads *the kind you put in the microwave but not he ones with hard stuff like rice in it, for muscle and joint pain.
Posted by Monica922 (Member # 13496) on :
Hi My recovery seems to be going at a snails pace if that helps I am getting better but it is SLOW! and very frustrating after being so sick and misdiagnosed up until 12 weeks ago. The babs symptoms and lyme are both less intense most of the time now but they are still there.
My ears are still burning inside, teeth pain, leg and arm nerve pain...and random burning. The pain is much less that 12 weeks ago but again it is going slow. I have been on IV for almost 11 weeks....long time to be stuck every single day. The nightmares continue but I do not have to take ambien to get to sleep anymore...now I can make Stephen King cry with my dreams.
I even started to drive around the neighborhood because I cannot stand being in this house anymore My eyes still get blurry so I am scared to go far.
Again it is getting better...but really slow. I did end up with a yeast infection yesterday..so now I am on Diflucan. I have to really watch what I am eating.
Monica
Posted by wiserforit (Member # 9732) on :
Had about three weeks of okay energy, but felt a growing depressing mind fuzz gradually setting in. Physically I was improving, but mentally I was sliding.
Now, I'm dizzy and totally unable to think straight between depression and confusion. I just increased my Amoxicillan by 1/2 a pill, but the brain fog came on before that. Dizziness brings on nausea and the need to lie down in a quiet room.
All I am taking is Malarone 62.5 mg once daily plus the Amox (875 mg. x 7). At LLMDs suggestion I put the Zithromax on the back burner.
I feel so discouraged right now! I don't think I am treating the Babs hard enough, but my LLMD and I both agree that I can't push harder without shorting out.
Thought I was improving steadily, so this feels like a setback.
Feels like when my arthritic symptoms are worst, my mind is clear; and when my mind symptoms are worst, my body has improved. Wish it would even out!
Sorry for the gripe. I'm feeling down and blue.
Wah,
wiserforit
Posted by AZURE WISH (Member # 804) on :
johnnyb - bactrim is a sulfa abx.
monica - They put a new iv in u everyday? if so you r much braver than me. Any time I need an iv it usually takes an average of three sticks (usually more than one person trying..people seem to give up pretty easy on finding a vein on me) I can't imagine one everyday!
wiserforit - sorry you are feeling so crummy. I seem to have two sets of rotating symptom clusters when one group is less severe the other is worse and vice versa. I was kinda wondering if one set is babs herx one set is lyme herx and itsmaking me very herxy alot of the time.
Posted by Monica922 (Member # 13496) on :
Yes I am stuck everyday and I hate it Today it took 4 sticks to get my vein and I started crying like a baby. It is a great deal on me to get there (40 minutes away) and have this done everyday. Draining and depressing. I also had a setback yesterday. I went food shopping for the first time since July. Then my nerve pain came back in full swing all night and I could not sleep. I hope I can sleep tonight. All I did was walk around the supermarket. I hate LYME.
Posted by Munch (Member # 11323) on :
Having this crud is worse than falling down a rabbit hole and finding yourself in an alternative universe. Why do I always have way more questions than answers?
I'm on 4 Malarone + 2 Zith per day with 2 Rifampin. This is all very frustrating because treating one infection ONLY makes the other one flare.
If I run my meds through a drug checker some of these meds lower the effectiveness of the other meds especially Rifampin - Diflucan - Malarone. Crikey!
I herxed bad around day 22 of the first 30 day cycle. Symptoms of air hunger, deep chest pain from trying to catch a breath, night sweats etc) came back after 2 weeks off the meds. Not as severe as it was before. Just very subtle sx.
I still have an enlarged spleen and some sort of liver cyst. (** sigh **)
Now I'm on a day 42 of 120 day cycle with another huge herx but this time around day 39.
Whatever I'm doing is working as I feel the inflammation and racing thoughts are leaving my brain. I find that I'm able to sleep without Ambien CR since the 2001 EM rash.
How do you know when you've finally gotten rid of Babs?
I'm 3.5 months into my 9 months of heparin. Next up after heparin will be more Rifampin, more Doxy and some Levaquin. Does this sound OK for Bart?
Is there a connection between Babs and/or Bart and multiple hormone deficiencies?
Does dumping the Babs (or Bart) cause hormones to return? I have yet to experience the flow of hormones return that David Berg (Hemex) mentions in a few articles.
Has anyone successfully treated this crud and been able to get off any hormones?
Or shall I thank Mr or Ms Tick for enrolling me into the lifetime plan of hypothyroidism and hypo-entire-HPA axis?
Posted by Amanda (Member # 14107) on :
Hey Cherylsue,
boy does you story sound familiar. About three years ago I ended up in the hospital for 4 days with a fever of 104 degrees, sweating like crazy, freezing cold, and it felt like someone was beating up on my kidneys from the inside, vomiting.
The hospital doctor told me I had "gastroenteritis". Took me several weeks to get well. Then for a year, I was completely healthy (I ran a half marathon and hiked up to the top of a volcano in Hawaii).
I could never figure out why I was better for a year....
On Mepron/zith/artemesia now. Some nights I wake up sweating, some nights I wake up SO HOT but not sweating. Mepron can cause nightmares or "intense" dreaming.
Neck is so stiff and painful it feels like my head might just snap off. Can't sit for more than 5 minutes because it hurts (but walking or lying down makes it feel better). But at least I don't have 10 day long horrible migrane headaches and non stop nausea.
I'm so glad that Babesia buddies is here! Its very helpful to read everyone elses responses.
BTW, if you have to buy Mepron out of pocket because crappy insurance won't pay, try going to rxpop.com. Type in Mepron, they give you a list of pharmacies, several from Canada (its absolutely legal, and Canada has better drug import rules than we do). You can get a months supply for 800, instead of 1100 (at Costco!)
Amanda
Posted by joysie (Member # 11063) on :
OK Babesia folks-I am currently on Bactrim and Zith. My LLMD feels this is an ideal combination for a "mild" babesia as well as Bartonella. I really like him, trust him, he's pretty well regarded.
But I never read about anyone but his patients on this combo for babs.I do need to add I was treated by an ID practise with a month of mepron/zith last year, had 5 months of doxy (yet another Dr.) before I got in to see him and have treated bart since then. He did feel that I had a mild case (babs) and that the loooong course of doxy was a good containment measure.
But anyway, anyone else out there on this protocol?
Posted by Monica922 (Member # 13496) on :
Hi Joysie I am not sure there is any real protocol after everything I have learned. If it is working for you and you are functioning...go for it. I am on IV Rocephin for the Lyme and Mepron/zith for the babs.
Posted by Bugg (Member # 8095) on :
Info on babs which might help some: I have recently ceased my babs meds (zithromaz, Mepron, and art). I felt like hell almost the entire time on the meds...(Although, the severity of the herxes did start to dissipate towards the end.) Anyway, I have been feeling like hell off the babs meds..increased fatigue especially, feeling like I've been run over by a truck. I've been quite concerned so I spoke with my LLMD, Dr. Mo, in Manhattan. He said that Mepron has a long elimination period (3 weeks) so many babs patients who've taken the combo I did have a hard time coming off the meds...I also recently read an excerpt by a physician on the WA Lyme Disease Support Group site that says that his patients have the most difficult time coming off Flagyl and also Mepron/Zith. He said with either of those drug regimens the herxes can be severe and it can take a month for patients to clear the toxins from their systems. Anyway, I've got to try to cleanse some of this crud from my system. Then, I'll see if I need more babs treatment or what wonderful other form of torture lies awaiting me...
Hope this gives someone some comfort who has a hard time coming off the babs meds....
Posted by Amanda (Member # 14107) on :
Josie,
I have heard that Bactrim is a good drug for treating Lyme, taken along with the Zith. Bactrim is also good for Lyme.
I have heard numerous stories of people who said that their Bartonella became much more aggressive with Mepron.
So your LLMD might be one of those that has seen this, and that might be why she/he hasn't suggested the Mepron.
Posted by Amanda (Member # 14107) on :
Joysie,
whoops! Meant to say that Bactrim is good for Babesia as well as Lyme
Posted by joysie (Member # 11063) on :
Thanks Amanda , I always like to hear from others. As much as I trust my LLMD it still helps. Posted by Geneal (Member # 10375) on :
I can see I am in very good company.
Just returned from LLMD today.
It's back......babesia that is.
This will be (I hope) my third and last go around for this.
I've done malarone twice at four times a day, but both for only 3 months.
My LLMD now says a minimum of four months (I knew that) and
Is going to Rx. mepron and biaxin this go around as I can't take zith anymore.
So......off to get the Rx filled to start tomorrow.
Besides the Yucky taste, can anyone attest if mepron packs a bigger punch
Than malarone? I am to do 4-6 months of this regimen.
At least I am off of doxy again. Which in our 80 degree sunshine heat
Yesterday, despite sunscreen of spf 50, gave me a "Rosy glow".
Good news is everyone says that my color has improved. I must be feeling better.
Maybe they should wait for me to start the mepron.
Hugs,
Geneal
Posted by merrygirl (Member # 12041) on :
I am joining your club! I finally got my clinical diagosis of babesia!
I start Mepron/Zith in about 2 weeks. My new llmd said I would likely herx 3 weeks in. Is that accurate?
Any advice?
Thanks Melissa
Posted by Monica922 (Member # 13496) on :
Oh Good Melissa...you will feel better soon. I herxed right away when i took Mepron...not three weeks later. I stopped the really bad herxs about two weeks into the meds.
Geneal..I have only taken zith and mepron for babs. This is my second month on the lovely stuff
I will tell you both that I think it gives you bad nightmares and night sweats. I also think it does something to the acid in your stomach. I had to get put on protonix two weeks after I started it.
That said I am feeling a little better on it now.
Posted by Geneal (Member # 10375) on :
Good news is that mepron is a cheaper co-pay than malarone was.
Bad news is that it wasn't ready today.
I started the biaxin. Within two hours of taking it,
I had tingling in my fingertips and stabbing pains in both shoulder blades.
Strange to get a herx so quick and so soon after doxy.
Now......I am trying to mentally prepare for the nasty mouth taste
That will be waking me up in the middle of the night.
Melissa.....glad to see a diagnosis and the company.
Hugs,
Geneal
Posted by Draba (Member # 14589) on :
Ha!!! hello to my fellow Babesia Buddies!!!! I'm currently treating Bartonella (!!!!) but I took Mepron for a while. It was not a pleasant experience.....
Posted by Amanda (Member # 14107) on :
FYI - There are certain drugs that significantly lower the concentration of Mepron in your system. And I have seen several people state they take these drug combos.
They are Rifampin, and possibly Refibutin (related to Rifampin). IT clearly states that information on the drug manufacturers pamphlet. Go to Rxlist.com , type in mepron, and then look under "drug interactions".
Also, FYI, doxycyline is also capable of reducing blood plasma concentrations of Mepron by 50%
Posted by Monica922 (Member # 13496) on :
Yes mepron is a crazy drug I am taking it with peanut butter now.
Posted by CD57 (Member # 11749) on :
Hi people, Do any of you take sleep meds while on babesia treatment? Do you find them necessary?
My LLMD thinks I have babesia but I won't be starting treatment for awhile yet. I am collecting information.
Thanks!
Posted by Draba (Member # 14589) on :
Mepron with peanut butter?????? He he he he he. That sounds awful. I'll have to try it if I go back on mepron. Posted by Monica922 (Member # 13496) on :
It is awful Draba I am off for an ultrasound....think positive.
Posted by merrygirl (Member # 12041) on :
Well I am on day 3 of Mepron Zith. Waiting for my herx lol... Nothing happening yet, although I have a headache.
Mepron tastes so terrible. I have a spoonful of peanut butter before and ater I take it.
How is everyone doing?
Posted by Monica922 (Member # 13496) on :
Hi Yes mepron tastes nasty but I can tolerate it fine. I was diagnosed with gall stones yesterday after a bad attack. They think it is from the rocephin. I may have to get it taken out if my liver enzymes do not improve. I do not want to stop the rocephin...honestly I am very torn on what to do now. Keep your fingers crossed that I do not have another attack. Monica
Posted by merrygirl (Member # 12041) on :
Hi Monica! I am hoping that it all works out for you!!
Can you all tell me when your Mepron zith herx started?
I am anxious about it. My llmd said 3 weeks and a few people told me day 3-5 or so.
I test neg for babs so I am hoping to herx like hell.
Melissa
Posted by Monica922 (Member # 13496) on :
Hi Melissa For me it was more like day 3-5 and it lasted for two weeks. Hope this helps. I have decided to try to eat low fat and see if I can keep the gall bladder for another few weeks. If I make it to the end of march it will be about 4.5 months on IV. What do you think?
Posted by merrygirl (Member # 12041) on :
Monica, I just feel blah. Kinda blue, pretty tired that is it.
I still cant believe they are poking you everyday. I hope you get to keep your GB. I think it is worth a try.
We should chat again sometime. I lost your number I think...I will pm it to you, feel free to call!
Melissa
Posted by Monica922 (Member # 13496) on :
Hi It was great to speak with you. I am going to try and eat low fat as much as I can to keep the gall bladder as long as I can. It just adds another element of stress to my life Posted by merrygirl (Member # 12041) on :
hey Monica! Hope today is better and they got your vein on the first poke!! I had Aquatherapy bright and early this am. Then the PT told me I could use the Hot tub! OOOOOOOOOOOOhhhh baby Just what I needed. I could have slept in there. That PT lady is my new best friend.
I did get hallucinations and sweats last night so maybe the mepron is working. I am just so tired I could sleep for weeks.
How is everyone else doing?
Melissa. Posted by wiserforit (Member # 9732) on :
hi guys!
haven't been here for awhile. Family got the dreaded flu/virus with high fever and hacking cough that lasts and lasts. Kids are getting better; husband got hit the worst; I just cough and cough but I think the AMOX is helping to keep other stuff at bay.
Monica, I will do the naked gallbladder dance at midnight for you. It's springtime warm, so I don't think I'll suffer! Gosh, what a pain in the patooty! I hope you can get past the GB pain with diet!
I have a friend who stopped the IV and went on orals after her GB was removed. I think she eventually healed and was later reinfected and went back on the IV Rocephin.
Thinking good thoughts to send your way with prayers for better-ness,
wiserforit
P.S. have had strange but welcome bout of good energy and productivity. I know I have to increase my meds, so this may be short-lived. For now, it's good.
Posted by Monica922 (Member # 13496) on :
Thanks Wiserforit I am trying my best with this low fat diet. I am one skinny chick..LOL. He wants me to stay on the IV through March if I can do it. Then switch to orals. The whole thing scares the Heck out of me. I just want to be a good Mom to my kids and I feel so horribly guilty for being sick! It really stinks!
Posted by Monica922 (Member # 13496) on :
Could not do it...too much pain! I am on orals now. Ceftin 500 2 times, zith 250 1 time, and mepron 2 times. Pray I do not relapse!
Posted by AZURE WISH (Member # 804) on :
monica - sorry you had to stop the rocephin. Glad you still have meds. I dont know how on earth you did iv as long as you did being stuck every day.
Don't forget that change of abx could produce a herx. If you do herx I hope it is an "easy" one.
I know being so sick can cause alot of guilt but try to let go of that as much as humanly possible. I know that this is much easier said than done... but I also know that stress and "weighted" emotions like guilt really make it much harder for me to heal.
Merrygirl - do you think aquatherapy helps with symptoms? (primarily pain/fatigue)?
Posted by merrygirl (Member # 12041) on :
I have only had 3 therapy sessions, and I am pretty tired when they are done. My elbows hurt tonight.being in the water is just nice. the water is nice and warm. The I get to go in the hot tub!!! I will keep you posted.
Monica I am glad you dont have to get poked everyday now. That was mean.
I think I am starting to herx from the Mepron zith.
Melissa
Posted by Monica922 (Member # 13496) on :
Hi Everyone How are you? I hav ebeen on the orals for three days now. I think ceftin is making me tired? Anyway I feel about the same. I wish the neuropathy would go away.
Posted by Monica922 (Member # 13496) on :
Hi Well I had what I think was a herx reaction to the ceftin..cried for two days. I stopped crying but the neuropathy still really hurts. When the heck is this going to go away? HORRIBLE nerve pain. Does anyone notice a reaction to lighting? I sometimes feel dizzy when I am in store...which is not often.
Posted by BJK (Member # 13251) on :
Hi All,
After 10 months treating for Lyme with (just to name the abx tx):
500mg biaxin twice daily, 500mg Ceftin twice daily, Then added 200mg Plaquenil twice daily 4 months ago as a cyst buster
Now LLMD and LD specialist suspecting co-infection...they think babs mainly due to sweats, but I found out bart can do this also...Im starting more meds, one at a time ramping up slow.
100mg Malarone (ramping up to 250) Later will change one abx to Zith
So far after starting the malerone I developed a "new" headache that comes and goes and tooth pain, that has now stopped. No herx...yet
I've been researching the co-infections, there are so many similar symptoms between Lyme and co's.
Many have asked- how can we know whats what?
Heres a link I use (as well as calling my pharmacy) to know the medications common side affects- minor and serious-
The numbers in the table indicate how many infections have that symptom.
I have 5 common co-infections on the table.
Heres how I use it- i print it.
Then I look at each symptom and if I have one, such as shortness of breath, I circle it under each infection it is listed under.
When Im all done I look at all the ones circled and what they could be for infections.
When I looked at mine, yes i could have Babs, but I had many more symptoms common to bart...so i could have bart or both.
If anyone looks at this table, and knows beyond a shadow of doubt what your infected with, I welcome symptoms feedback that may be missing on my table....just send me a PM. I greatly appreciate it!
Thanks for starting this thread , as my babs reatment progresses i'll be checking back from time to time.
BJK
Posted by merrygirl (Member # 12041) on :
Hi all.
Same old crap here. How is everyone? I have no idea if I am herxing or not, which I think that if I was I would know..
I think today is about 18 days on Mepron/ Zith
LLMd said herx would come around 3 weeks
Monica that weird dizzy thing happens to me all the time. I went to walmart to get just a few things and I was feeling "good". I kid you not it was about 4 minutes and I was delirious. I might as well have been in Iraq, because I had no idea what was going on. I felt like I just might die.
But here I am...
Weird
Melissa
Posted by Monica922 (Member # 13496) on :
Hi I saw the LLMD today. The neuropathy is a little worse but he said that is not uncommon when you switch from the IV to orals. If it continues I would have to take out my gallbladder and go back on the IV..lets hope not! I was given Lyrica today. I think some of you are also on Lyrica....is this a good drug? Anything new I need to worry about? Thanks
Posted by Geneal (Member # 10375) on :
Quick question.
Finished my first 3 weeks of mepron/biaxin yesterday.
Today only biaxin. Yeah!!!!
Except that I already have stabbing pains in my neck and it is crunchy and stiff.
This went away around day 5 of mepron.
Babesia????!!!!
I am not sure if it is the mepron, but I've had some pretty weird and scary
Dreams lately. My energy level was coming up....today going down again.
What do you guys think?
Thanks for any thoughts on the subject.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
Hi Geneal Yes when I first went on mepron I had dreams that would make Steven King cry I definitely think it was the mepron. They do eventually stop though. Are you off it now? It is hard for me to tell the difference between teh Lyme and babs. The only real babs thing I can link to is heart palps..everythng else could be anything.
Posted by Geneal (Member # 10375) on :
Thanks Monica for the info.
I am on my week off this week.
I tell you this air hunger is about to do me in.
That and my heart racing, the fatigue, and my neck hurting again.
I have dealt with air hunger more on than off for over 18 months.
I just hope this go around (first time with mepron was on malarone twice before)
Will do the trick. It scares me sometimes.
Sometimes I wonder if I will ever breathe well again.
I do great with breathing at night laying down though.
Hugs,
Geneal
Posted by Health (Member # 6034) on :
Hi everyone,
I tested positive for Babesia Duncani, and was positive for Babesia on the FISH test from IGENEX as well, am only on Azithromycin now, but will be going on the Mepron soon.
Have had babesia for about 15 years untreated, and did treat it with Clindamycin and Quinine 2 years ago, did this combo for about 3 months,
then stopped it, then did it again, months later, Maybe I would be ok to go on it again, but the new LLMD wants me on Mepron instead,
still testing positive for Babesia, so will see what happens with Mepron and Azithromycin.
I read all I can, have been treating Lyme and these infections for about 5 years, off and on antibiotics, I research info, even if I see a LLMD.
I recently came across this on the Internet----- Dr B says NO Doxycycline while on Mepron. I then went on to be told that this is because Doxycycline reduces Mepron by about 40%.
This is HUGE, why are some of you on Mepron and Doxycycline? I also was told that the Cyline antibiotics may do this as well, the tetra and the Minocycline, but I am going to call the Mepron company tomm and see what they say.
Mepron is So expensive, and if you are on Doxy and it is reducing Mepron,
Oh no! who wants this.
I am to do more research and will bring this up with the new LLMD.
Very concerned about you all on Doxy and Mepron,
Trish
Posted by Monica922 (Member # 13496) on :
Hi Trish Most of us are not on doxy. Many are on eithe ceftin and zith like me or biaxin. I hope the mepron helps you. How long are we supposed to stay on the mepron?
Posted by Geneal (Member # 10375) on :
My Rx for mepron is 4-6 months.
Hope that gets it this time.
Hugs,
Geneal
Posted by Geneal (Member # 10375) on :
Anybody else in the middle of a babesia herx?
Day 31 and I feel like I did before I was diagnosed!
Body shakes, headache, fever, increased air hunger, brain fog.....
Yikes!!!!
They say that misery loves company.....any takers?
Hugs,
Geneal
Posted by merrygirl (Member # 12041) on :
Today is the 3 week mark for me.I think My spleen hurts. Pretty depressed and tired.
My llmd said around the 3rd week I should have a bad herx. So anytime now?
I read it taked 3 weeks for the mepro to reach a good level....
We will see
good luck friends Melissa
Posted by Monica922 (Member # 13496) on :
Hi Everyone I have no idea what has made me cry for the last week and increase my ear/jaw pain again. I am not sure if it is teh ceftin or the abx are not working? How the heck do we tell?
Posted by Geneal (Member # 10375) on :
Rib pain, swollen lymph glands under arms.....breasts hurt, joint pain.
Maybe I am in the middle of my monthly herx with Lyme as well.
Oh....new thing. I've had these vibration things like a cell phone
Set on vibrator in my pocket. It went away on doxy.
Came back two days ago in my left elbow.
What is that????!!!!!
I haven't felt this bad in a long, long time.
I was going to apply for a part-time job in Speech Therapy in our local
School system for this fall.....but with the way I can't speak right now...
I am afraid to commit....or even do an interview.
Most days I handle it well....today just isn't one of them.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
Hi Geneal I hope you can try for that job. I am on 500 mg ceftin twice a day, 250 zithonce a day, and mepron twice a day. I was previously on the IV Rocephin for 13 weeks...but it started to kill my gall bladder. I hope this is a good regimen of drugs. I need to get my life back...this has been absolutely NUTS.
Posted by Geneal (Member # 10375) on :
Up for us miserable mepron takers.
Hugs,
Geneal
Posted by wiserforit (Member # 9732) on :
Hi you guys!
Just seems like it's been a long time, so I'm checking in to say hi.
So, do you guys have body temperature regulation problems? I'm cold/hot/cold/hot and get the chills/shakes the day before my monthly.
Was doing well for about 5 weeks and just got slammed with complete exhaustion, chills/sweats, headache and jaw/face pain stuff. Came on so sudden I almost thought it was a flu or sinus infection or something. Antihistamines make me more exhausted and don't touch the face issue....
I'm afraid the Babs is toying sadistically with me and it's time to ramp up again.
You guys are brave Mepron Warriors and I am the Malarone Meek Geek. Keep hanging in there and beating the darn critters. JUST HATE THOSE THINGS!
Best,
wiserforit
Posted by Monica922 (Member # 13496) on :
Hi Wiserforit Yes my night sweats and chills come back in waves...along with my lovely jaw/ear pain. I am getting really depressed. I am now on Pencillin VK also which is killing my stomach and making me cry all day. This is horrible!
Posted by Geneal (Member # 10375) on :
Dear Wiseforit,
I did malarone (4 x a day) for 3 months twice prior to mepron.
You are not a weak one for that.
I herxed so bad on malarone....Yikes.
My LLMD rarely uses mepron....only for resistant cases such as mine.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
Do you all have ear pain/jaw assoicated with babs? By the way did you fill out my abx symptoms survey in the main medical questions section..it is on top. Thanks
Posted by CamB (Member # 14999) on :
my mother's ONLY symptom seems to be a severe rocking vertigo. she's had it for years and it's gotten worse and i am beginning to suspect she has babesia. (she tested and treated lyme previously. her lyme symptoms seem to have quieted down considerably)
we just found out she has anemia as well, tho she has some bone fractures from a recent fall so the doc thinks her iron is depleted due to this... i suspect otherwise
MY QUESTION IS: what can i tell the very nice duck doctor to test mom for? looks like there are different strains of babesia. i want to make sure we are looking at all the correct babs tests. mother lives in virginia but we are currently in atlanta at a physical rehab center.
Posted by Geneal (Member # 10375) on :
A lot of members here are now using the Fry labs for co-infection testing.
Igenex also tests for babesia.
That being said, my Fish via Igenex was negative, but I
Definitely have babesia.
Your Mom needs to see a LLMD who can make a clinical diagnosis of babesia,
Based on symptoms and the right blood work if needed.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
I even used the crappy Quest Lab and came positive every time. Babs is hard to get rid of!
Posted by herbalfrog (Member # 12711) on :
Hi all, Was reading your posts and your comments about the side effects/allergies you have to certain drugs. Have any of you seen an allergist to test for the medication prior to being prescribed the darned drug? Being allergic to just about any med, my doctor put me on vicadin IV for 3 months, Tindamax, Zithro and Lariam plus Glutathione Cream. I have had Lyme's and Babs for ten years and this is the best I have felt. I was tested at Bowen Research Institute where they test with fluorescopy. I hear very few talking about diet, but a low carb diet below 30 carbs, improves my overall condition greatly. I like some feedback on this from you. Keep the faith-It's a long road, but life can be beautiful! Else
Posted by Monica922 (Member # 13496) on :
Thanks Else I am trying to modify my diet also and see if it has an impact. I will be placed on new meds on Monday and I have no idea what they will be? I cannot tolerate the Penicillin VK. I love to hear the positive through you...thanks! Monica
Posted by BJK (Member # 13251) on :
I've been on Malerone for about 5 weeks now.
My stabbing bone pains seem to have stopped for the most part.
I no longer have wierd sticky night sweats that seem to focus around my neck...yuck...dont miss that one!
My energy level has improved and I get much less "backlash" after doing something active
My muscle twitching has reduced, but is still there, even though still on klonopin.
My mind has cleared more each week and I can read and write better as well. I still have slow processing and some glitches where momments in time fall into one of the holes in my brain
So, even though most tests showed negative, with the exception of one showing traces of babs DNA, it would definitely appear I have babs, as the malerone is working.
In a very stange and ironic sense.....Yeah! One more thing is finally being treated.
There is a particular "set" of symptoms that still trouble me, in that they are not improving with the others.
My vice-like headache, loud ringing ears, and sound sensitivity remains unchanged.
The symptoms always increase or decrease together, as though they are all being caused by the same thing. Ive had them for almost 4 years now, since I first became unknowingly ill with Lyme.
Klonopin helps the headache to a degree but this drug looses its effectiveness over time.
I also showed traces of Ehrlichia (spelling?) but I was under the impression Lyme meds took care of this one????
So, Im wondering if anyone has thoughts on the remaining, unimproved "set" of symptoms?
Is it too soon to tell?
Anyone have this set of symptoms caused by something else then treated and healed?
Thanks
BJK
Posted by Clarissa (Member # 4715) on :
Please help, Babesia friends! Only 6 weeks of treatment??
Has anyone ever heard of Babesia being treated for such a short period of time?
Treatment: Zith 250 mg 2X a day 1 tsp Mepron 2X a day 1 artemisae 2X a day
My Mother was pulled off her Babesia treatment after only 6 weeks (to treat Bart with JUST Cumanda (?) and she most likely is a chronic case.
Cut to 2 weeks later and her symptoms are:
pain in rib cage/spleen area excessive exhastion brain fog numbness in right lower leg dragging herself around the house
I think she's relapsing and that six weeks was NOT enough!
Please help as I think she needs to get back on treatment!
Thanks so very much,
-------------------- Clarissa
Life's a Journey not a Destination
Posted by Monica922 (Member # 13496) on :
Hi Clarissa Most people are treated for at least 4 months. I think babs is a very hard one to get rid of once it takes hold of you.
Posted by Clarissa (Member # 4715) on :
That's what I thought!
Thanks for the information, Monica.
Posted by creativeguy (Member # 15046) on :
[ 24. July 2008, 02:02 PM: Message edited by: creativeguy ]
Posted by trish4 (Member # 14156) on :
Hey everyone Well it looks like Ill be joining the Babesia club. Just got my positive today. NOT ! lol Will be starting Mepron tomorrow. I've read everyones posts on this board and think it is a great thread since there are quite a few of us battling this co-infection. Ive 20 pounds since being bit and have also had the horrible horrible air hunger. The air hunger has subsided since starting tx for lyme, but Im sure the Mepron herx will bring it back No night sweats though even though I would have much muuuchh rather had that symptom than the breathing ones lol
Will keep everyone updated.
Posted by Monica922 (Member # 13496) on :
Welcome Trish and creativeguy. Note CG your may get more anxious and depressed for the first couple of weeks on Mepron. I am only on 250 zith and twice a day mepron and it really made me anxious and depressed...still does It also gave me horrific nightmares at first. It will stop so do not worry if you get them.
Posted by Geneal (Member # 10375) on :
I had occasional night sweats prior to mepron/biaxin.
I had drenching night sweats for every night for the first 5 weeks of treatment.
Yuck. I don't think I've done so much washing of sheets in my life.
I am on my second break from mepron (the 3 weeks on with 1 week off),
And am feeling like my head is in a vise..balance issues, air hunger, etc.
Is this a herx or symptoms returning while off of mepron?
Just curious if anyone has any insight.
Hugs,
Geneal
Posted by Monica922 (Member # 13496) on :
It should not come back that fast? I have recently had some air hunger issues myself. Does anything else cause air hunger?
Posted by tic chick (Member # 9156) on :
Geneal,
I too have balance issues and am in-between LLMDs right now so I am taking an ABX break. Is the balance issue a definate sx of Babesia, Lyme, or a combination?
I am considering putting myself on mepron, as I have some leftover from last year. I also have Biaxin to take with it.
I see new LLMD 4/23. What does everyone think? Tic
Posted by Dawn in VA (Member # 9693) on :
Hey guys, what do you think causes the air hunger lots of us get? Does babs get in the lungs particularly deep or something?
I didn't have any air hunger until my 4th month of the mepron combo. Did not have it before treatment either. Wierd.
I didn't know I had babs for a long time. My first LLMD didn't test me for it b/c I didn't have bad night sweats. But the second one did, and it came positive via Quest. I just had a titer check after 5 months of mepron/zith, and the titer still came back above normal. Blech.
Posted by trish4 (Member # 14156) on :
I would like to know your guys opinions as to whether or not babs really ever does get cured (put fully into remission). Does the treatment really take over 2 years?
Is 2 teaspons twice a day enough? Or should I ask my Dr. to put me on 2 teaspons 3 times a day. I want to be as aggressive as possible. Has anyone ever taken that dose?
Also why do I see so many posts of mepron having such a horrible taste. It doesnt taste that bad to me? It looks strange (yellow paint lol) but the taste doesnt seem to bother me.
[ 03. April 2008, 04:25 AM: Message edited by: trish4 ]
Posted by Geneal (Member # 10375) on :
I (believe) with mepron that anything more than 750mg twice a day,
Is actually wasted. My neighbor, a RN, said your body couldn't absorb more.
So basically more would be a waste.
I am pretty sure my balance issues are babesia.
It could be that I am hitting a babesia/Lyme herx that just so happens to coincide
With my 3 weeks on and one week off of mepron.
My energy levels which were good last week....are gone.
My POTs also seems to increase the week off of mepron.
I am going to make a phone consult appt. with my LLMD for next week.
I am glad that I waited for at least two cycles of mepron and documented symptoms
So that I can discuss this with my LLMD.
Never thought I'd say it, but yeah!!! Back on mepron tomorrow.
Hugs,
Geneal
Posted by trish4 (Member # 14156) on :
Thanks Geneal, yeah I did some more research myself (my computer is my lifesaver right now, as all this medicine Im on has basically confined me to my bed so all I do is research stuff all day lol), and 2 tsps twice a day is the max amount to take.
It is my 4th day on Mepron, and I did develop the air hunger feeling, which Ive not had in quite awhile, so I guess its hitting something. However, no night sweats. I have only had 3 days of mild night sweats about a year after being bitten. I thought the mepron might bring out the night sweats but it hasnt.
Also Im gonna do a 1-2 day break from abx to confirm that it IS the medicine making me so ill and not my own body. Do you guys think this is a really bad idea? I know its not the best thing to do, but could it really be that bad in my treatment process.
Posted by Clarissa (Member # 4715) on :
Question for Babesia patients:
Hi Friends,
I just recently saw a well-respected ILADS LLMD who actually was very agressive with my Lyme 6-years ago and it was a successful treatment;IVRocephin for 8 mos and orals for a year.
I've been treated for Bart for the last 5 months and, miraculously, I've been told by TWO LLMD's that, based on my 2nd Fry lab being cleared and lack of clinical symptoms that I can stop the Bart treatment.
They both feel it's "in remission" or "killed", whatever the correct verbiage is for these ambiguous TBD's.
Here's the quandary:
My Igenex Babesia FISH test came back as a very low positive for Babesia Duncani. My LLMD is referring to it as "being exposed" and because I have no Babs-specific symptoms, he thinks we should hold off on treating it after I've had such toxicity from the: Rifampin/Zithro/Cholestyramine combo for 5 mos for Bart.
I do not have any typical Babesia symptoms: lethargy, malaise, joint/foot pain, headaches, insomnia or nightsweats.
I'm normally a very pro-active, "face-the-music" kind of person so I'm feeling conflicted. I know if I insist on treating the Babs, he would give me the rx's.
My current plan is to wait a month or so, do some major cleansing/detoxing, probiotics, get back into exercising, build up the immune system and then make the decision to treat or not to treat.
I'd appreciate any thoughts/opinions and please do not be afraid to be honest. I respect your experiences and opinions.
Gratefully as always!!
Posted by Clarissa (Member # 4715) on :
Up. Hoping for some experienced Babs patients input on my post above.
(Trish: Thanks for your input in medical section)
Gratefully,
Posted by Geneal (Member # 10375) on :
I think taking a month off isn't a bad idea.
Maybe try the babs meds and see if you herx?
I would rather treat and be sure than miss something that would really hold me back.
Even despite the fact I am really, really tired of taking all of my meds.
Just my humble opinion of course.
Hugs,
Geneal
Posted by Clarissa (Member # 4715) on :
Thanks, Geneal. It is kind of like being stuck between a rock and a hard place.
I think it's "mandatory" that I give my body a rest after the agressive Bart treatment, anyway, so a month to 6 weeks will be a good amount of time to do some cleaning up candida-wise and biotoxin-wise (and, of course, I have that wretched biotoxin gene so bring on the cholestyramine!)
Then, yes, it might be a good idea to try out meds specific for Babs and see what happens.
I'll cross that bridge by late May. I'm definitely not one of those kind of people who can "picture" something festering in my body like a ticking time bomb.
I'm more like the kind of person who'd become psychosomatic knowing it was in there!
Gratefully,
Posted by Monica922 (Member # 13496) on :
Well after four months of babs treatemnet the LLMD pulled me off and I am now treating Bart. I hope it does not come back Posted by lymewreck36 (Member # 4395) on :
I've been treated for Babs for 5 years now, and have never gone into remission. I have seen 5 different llmd in my travels and tried every combo there is.
I recently was given the book on babesia and have been reading it.
I will post what I have learned and how it pertains to my experience with babs when I finish the book. It is amazing what I have learned.
Babs is hell. If you have a slightly positive test but are not symptomatic, don't sit around and wait for symptoms.
Treat it!
I haven't read the massive posts in this thread yet. I'm dying to get to it, but the ones I have read, I have a response for. There is so much to say. Where to begin.
Take care all of you and I'm sorry you are in this boat as well.
Mary
Posted by CD57 (Member # 11749) on :
Bumping this up! Any new babesia buddies?
Posted by lymeladyinNY (Member # 10235) on :
Yes, I'm a babs buddy. I've been a babs buddy for a long time but didn't know it!
I am herxing a lot with a protocol that I've designed for myself based on the Babesia book. My LLMD knows what I'm doing and is providing the mepron/zithromax.
I've discovered with these die-off reactions that many of the symptoms I attributed to Lyme were actually babesiosis.
I was treated for babs in 2004 for 4 months and thought I was rid of it. Then this past summer I kept falling down suddenly. My legs were getting weaker and I kept spacing out, too.
I am taking artemesinin 400 mg daily and plan to keep ramping it up each time I plateau. I've already plateaued at 300 mg.
I've had terrible leg/foot pain, chest pain, headache, and weakness since I started artemesinin with the mepron/zith. I am forging ahead despite my discomfort because I'd like to be at a much better place by summer.
I'm responsible for the care of my two younger sons when they get out of school and I don't want to feel horrible and be bedridden during summer vacation.
Best wishes to everyone on their freedom-from-babesia journey!
- Lymelady
Posted by CD57 (Member # 11749) on :
Lymelady, I'm now officially a buddy too....I started a few days ago with a tincture called ABAB and will likely add Mepron and co very soon. How's it going?
Posted by lymeladyinNY (Member # 10235) on :
CD, I am so, so sick today that I've decided to back off of the artemesinin. In fact, I feel so bad that at one point I considered going to the hospital. Then I remembered that they'd do nothing for me, so why bother?
I feel so ill that I wonder if I'm dying. Well, like so many of us on this board, that's how I'm feeling. I'm very tired now. I feel depressed.
Bye for now.
Posted by kmj (Member # 18400) on :
Can I join you? I am on day 9 of azithromycin and mepron - tested +Ve for Babs, Last night, I got a fever from nowhere of 102. It crept up as high as 104 last night but is now starting to come down. I don't know if I am herxing or if I have flu. I have muscle pain and twitching, stiinging sensation on my skin, very red face, fever, chills - but I also have terrible sinus pain, headache and congestion. So I am wondering if this is herx or if I have just gotten a flu/cold virus. I also read that herx with babs starts in 3rd wk so wouldnt this be way too early for a herx reaction? Posted in the support section and got a pm suggesting I contact my llmd. What do you guys think. Am I hoping for too much that this is herx. Do I just have flu?
Posted by CD57 (Member # 11749) on :
The more the merrier! Yay! Sounds like it could be a herx....I know a lot of people say they herxed 3-4 days in and then again around day 10, and then 3 weeks in....so youre right on schedule!
As for me....I had a crying meltdown in Target, it was purely chemical, SO bizarre, then I was fine! I didn't know twitching was part of babesia. I have that too!
Posted by Deep in 'tis pear (Member # 10427) on :
Agree with you trish4. Mepron is actually sort of interesting tasting... Plus, who cares about the taste, if it is going to cure you.
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insurance company to get the co-pay lower than $594 for 21 days of it!) ![[lol]](graemlins/lol.gif)
) I had a bull's eye rash but we didn't know what it was, so even though I got the "flu" a couple days later we didn't think they had anything to do with one another. ![[shake]](graemlins/shake.gif)
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I stopped taking the zithromax so that I could fly there and be helpful to her.![[Wink]](wink.gif)
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Just what I needed. I could have slept in there. That PT lady is my new best friend.![[sleepy]](graemlins/sleepy.gif)
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