posted
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
Posts: 422 | From CT | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
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
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
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.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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.)
Posts: 54 | From Virginia | Registered: Jan 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
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!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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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.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
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!
Posts: 422 | From CT | Registered: Oct 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Malarone has Mepron in it ....
Mepron is giving to people allergic to sulfa drugs .... that is what came up with a quick Google search.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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!
Posts: 422 | From CT | Registered: Oct 2007
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posted
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! Posts: 54 | From Virginia | Registered: Jan 2008
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posted
Thanks, how is your stomach doing on the quinine? Thanks for the support. I took an ativan, waiting for it to kick in Posts: 422 | From CT | Registered: Oct 2007
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posted
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?
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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...
Posts: 422 | From CT | Registered: Oct 2007
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posted
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! Posts: 54 | From Virginia | Registered: Jan 2008
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posted
Yeah the tooth thing is like a constant dull throbbing in my gum area next and it centers around 4 teeth...I know nuts.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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!)
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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... Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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...
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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?
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
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!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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.
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
Posts: 1 | From US | Registered: Jan 2008
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posted
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
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
Thanks to both of you. It is so important for us to know there are people that have gotten better!
Posts: 422 | From CT | Registered: Oct 2007
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posted
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?
Posts: 422 | From CT | Registered: Oct 2007
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posted
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! Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
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!
Posts: 54 | From Virginia | Registered: Jan 2008
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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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
Curious, what is the normal herx length for this wonderful drug? WOW this is NOT fun.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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!
Posts: 422 | From CT | Registered: Oct 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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?
Posts: 422 | From CT | Registered: Oct 2007
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posted
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
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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...
Posts: 183 | From Texas | Registered: Nov 2007
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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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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