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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
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 Posts: 422 | From CT | Registered: Oct 2007
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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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
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.
Posts: 183 | From Texas | Registered: Nov 2007
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posted
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).
Posts: 422 | From CT | Registered: Oct 2007
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posted
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."
Posts: 54 | From Virginia | Registered: Jan 2008
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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??
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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! Posts: 215 | From Student | Registered: Oct 2007
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posted
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!
Posts: 422 | From CT | Registered: Oct 2007
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posted
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.
Posts: 183 | From Texas | Registered: Nov 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
dbourne- if you are getting better from treatment that is good!! some people are lucky and don't herx they just get better.
posted
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 Posts: 422 | From CT | Registered: Oct 2007
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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
Posts: 2 | From Olathe, Kansas | Registered: Jan 2008
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posted
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
Posts: 422 | From CT | Registered: Oct 2007
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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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
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
Posts: 422 | From CT | Registered: Oct 2007
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posted
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! Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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. Posts: 54 | From Virginia | Registered: Jan 2008
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posted
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?
Posts: 422 | From CT | Registered: Oct 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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
Posts: 1954 | From Illinois | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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!
Posts: 1155 | From Southeast | Registered: Oct 2005
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
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.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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
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
Posts: 422 | From CT | Registered: Oct 2007
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posted
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
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
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
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.
Posts: 422 | From CT | Registered: Oct 2007
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posted
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?
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
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
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
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?
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
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....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
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.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Joysie,
whoops! Meant to say that Bactrim is good for Babesia as well as Lyme
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Thanks Amanda , I always like to hear from others. As much as I trust my LLMD it still helps. Posts: 520 | From Maryland | Registered: Jan 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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
Posts: 3905 | From USA | Registered: May 2007
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posted
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.
Posts: 422 | From CT | Registered: Oct 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
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.....
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
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%
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Mepron with peanut butter?????? He he he he he. That sounds awful. I'll have to try it if I go back on mepron.
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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