My neck hurts stiff neck vertigo brain starting to go downhill again tired hot flashes sweat easily pain pain pain! Did I say, "pain"? Oh, yea! My body is in pain.
I feel like I've taken a few few steps backward. I know alot of people have relapses but it's still super hard to take. Let's not get into how depressing and scary it is.
I haven't been to the gym in over a month. Too sick and tired. I'm giving up my job. My "easy" low paying job is too hard now.
Really truely blows.........
Ignore the flower below it's a facade.
Posted by savebabe (Member # 9847) on :
I may be joining you soon.
Relapsing babesia stinks and I don't know how to get rid of it, I have tried almost everything.
Keep us updated on your treatment. We may have another "mepron buddies" thread going on here soon. Posted by CaliforniaLyme (Member # 7136) on :
I was on Mepron for two years until my Babs was gone. My daughter was on for 9 months!!!!!! The last year of Mepron I was also on the Dr. Z formula of Artemisia and I think it made a HUGE difference- (and I don't think the brand matters, I'm sure any would have been just as good!!) But both my daughter & I needed to stay on for that long for it to go!!! She has been in full remission for 5+ years now (she is 10!) and I have been in full remission from Babs and Ehrlichiosis (HME) but not from Lyme (unless it is Bartonella which I wonder about)... but I just have a 1-3 minute left knee flare each month Premenstrually now, all other symptoms gone as long as I get good sleep- Anyway, Doc J keeps people on Mepron for long periods of time and he was the one who advised my doc to have us keep on- and he was right- eventually it was gone*)!*)!!! And has stayed gone- but it took SO LONG!!!!!!!!!!!!!!! Best wishes, Sarah
Posted by kelmo (Member # 8797) on :
Thank you for that hope. I am getting ready to order art. The mepron was giving my daughter hallucinations, so we had to stop for a couple of days. She will ramp up slowly again this week.
You might want to check for bart if you haven't been treated. Our LLMD says he is finding in the photo blood slides he does that the two almost always go together.
Kelly
Posted by cantgiveupyet (Member # 8165) on :
Awww sorry to hear this Heather. You hang in there, you have come a long way, hopefully these symptoms will be gone once you start the Mepron.
Many hugs!
Posted by WildCondor (Member # 434) on :
If you do babesia treatment again with mepron/zithromax/artemesia, maybe the doses should be higher, and you should take it for a longer period of time. Posted by Got Lyme? (Member # 11109) on :
Heather,
WOW....I read your post and thought it was about me!
I am on Mepron/Zith and have been for almost 4 months.
I thought it was working really good but in the last month I have been questioning what was happening.
Now I feel like everything is worse even when I'm not herxing.
I see my LLMD 4/5 and I don't even know how to explain to him what is happening.
It feels like everything is in my brain again. My neck is always stiff and in pain.
The frontal headache comes on everyday.
The weakness/numbness/tingling in my arms and legs is daily.
I'm getting more and more down about it.
Seems like it will never go away.
Prior to the Mepron/Zith, I was on Plaq/Biaxin for about 6 months which really helped for a while, and then I hit a plateau.
Maybe that is what has happened again with the Mepron/Zith...another plateau!
Now what can I take? My LLMD talked about putting me on something if the Mepron/Zith plateaus....I only remember that it is a shot.
Oh, Great!!
Posted by treepatrol (Member # 4117) on :
After 4 months biaxin xl and mepron I had drug induced fevers high!!ones low ones fevers stopped when I went off mepron immeadiatley next day. Something to be aware of?
[ 24. April 2007, 02:18 PM: Message edited by: treepatrol ]
Posted by CaliforniaLyme (Member # 7136) on :
With me the Babesia tx was frustrating because for no apparent reason it would seem like I was backsliding or becoming rsistant or it was not working anymore but then it would again... But ithappened a few times where all of sudden symptoms which had gone on Mepron would resurface for a couple of weeks and I would be going AGH!!!(not really out loud, but in my head, AGH!!!!!)
For my daughetr it was much more straightforward- she got well right away like the second month but kept testing positive in blood and when we took her off she would get sick again and her CD57 was highly reactive to this would go straight to 2, 4 and not kidding- once- ZERO!!!!!!!!!!!!!!! When she went off Mepron- !! Yet she seemed fine while ON Mepron- but it would correlate exactly- and she was still blood positive-!! And would become symptomatic when taken off!! FINALLY she tested blood NEGATIVE for Babs so we took her off again- and she didn't get worse and her CD57 stayed in the 80s which was the highest hers ever got!!! Anyway- then she has been fine for years now.
We had one little girl in our support group who had been on Mepron for 3 months or so- and then she went on Art for 1 month alone and it was gone immediately but she stayed on a month. I think Art is great-
For me the Art gave me horrible rage feelings which unfortunately had me yell at this cat we have who is a trial, yes, but formerly and since a *blessed* trial- but I RAGED at this poor little kitty and even SPANKED him once and I don't spank cats (or children!). He like all our cats is a rescue and very neurotic and was going through his phase of lovingly urinating on my feet (really, purring loudly and happily while doing so, it was terrible- STILL_ he didn't deserve to be yelled at or spanked, poor little mentally deranged kitty!!!)
BUT I was grateful that that had not spilled out on my kid!! But it was just the scariest most horrible rage feeling- that is the only thing I don't like about Art- I think it can be dangerous!!! And what vivid nightmares, too!!!
Still, NOW I don't have any of that stuff so I am glad I hung in there~!!
Best wishes all, Sarah
Posted by Foggy (Member # 1584) on :
Heather, sorry to hear you so Blue. What happy to your happy Raisin Bran Sunrise Avatar? Cheer up Sweetie!
Here's an interesting site. While not directly Babs related, it does discuss treatments that some LLMD's use for Babs.
Heather...I'm so sorry to hear this! Those backward slides are gruesome to endure!
Have you tried adding artemisinin to the mix?? There's always clindamycin/quinine or clindy/plaquenil to try.
Mine finally went away on art and zith after MANY, MANY rounds of clindy/Q.
HUGS and more hugs! You'll beat this too!
Posted by HEATHERKISS (Member # 6789) on :
Thanks everyone. Your all so kind and generous.
Love and healing, Heather
Posted by MariaA (Member # 9128) on :
Wow that sounds nasty.
Have you guys tried cryptolepis tincture- it's an herb that's been tested in Africa for malaria (it was mentioned in the recent link to herbal malaria treatments that was here about a week ago).
Stephen Buhner recommends cryptolepis for babesia now instead of artemisinin, due to the art side effects that Sarahs describing. Here's some more information from Buhner's advice column, which includes the two sources of cryptolepis in the US:
Hang in there. Try some of the suggestions mentioned above with your doc's ok ofcourse. It does get better.
I did mepron/zith for 6 months. I added in art the last 3 months and could only tolerate 20mgs. After stopping this combo I relapsed within days - very depressing!! I did another round for 3 months and then switched to quinine/clindy/art and have been making even more progress!
I took a 6 week abx "vacation" after a horrific herx and DID NOT relapse. I'm back on quinine/clindy and am tolerating 300mgs of art no problem. Nightsweats are gone, petechia rash is clearing up and hair isn't falling out. Oh yes, and no more bruising!
There is hope.
Posted by Talktel (Member # 7980) on :
Has anyone done mepron alone without zithromax or artmesian successfully? I've also relapsed in babs.
I can't tolerate neither zith abx or art, and after some days of being off mepron, I've restarted it again. (after having the flu also)
I'm feeling lousy now with all my symptoms, and I don't know if it's a herx after restarting mepron, or am I going downhill?
I am still on bicillin IM shots.
This is so depressing, especially when one can't even tolerate any treatment
Lymehead
Posted by sixgoofykids (Member # 11141) on :
I'm taking Biaxin instead of Zith, have you tried that, Lymehead? I also take Artemisia and a bunch of other stuff, but I know that Biaxin and Zith are the the same family.
Posted by AZURE WISH (Member # 804) on :
Heather,
I am so sorry to hear that you are feeling so bad .... again.
I am also sorry that you have to give up your job.... again.
I know both of these things can be very difficult to have to go through.
Hoping you kick babs butt quickly.
Hang in there. Posted by oxygenbabe (Member # 5831) on :
Heather what about zithromax and quinine? That was used in resistant babesia in Taiwan, I think? It's also used in malaria. It really hasn't been tried much for babesia here. Just a thought.
Posted by Robin61 (Member # 5470) on :
HEather, look up Liz 28 posts about what she did. Email her if you need to ... I am now doing her protocol and it is going very well i am seeing instant relief. After months and months of mepron and Zith and malarone and two rounds of clinda and quinine. Hope this helps. Robin in Houston
Posted by trueblue (Member # 7348) on :
Heather, I'm really sorry this truly does blow. I do feel your pain, really.
When can you re-start treatment or have you already?
Posted by breathwork (Member # 567) on :
Heather, I'm so sorry...Welcome to the club of babs relapse. What a rotten club to join!
I have babs WA1 which seems to be tougher to get rid of than the microti...that's what the doc says....I'm one of his recurrent relapsers..
We've tried Mepron and Zith, Mepron and Biaxin, Zith and Flagyl, High dose Lariam, etc....
We rotate the treatments and every time it takes a different combo to knock it out. It's as if we're in a boxing ring and each round we wear the babs down a bit until we get a knock out.
Now we have discovered that my gut doesn't process fats properly, a common issue with patients who have celiac disease as I do. So, I can't use the Mepron as it requires bonding to fats in the gut in order to be absorbed.
Frankly, I don't miss the Mepron at all....made my stomach miserable....tasted horrible to me.
So we're on the Zith and Flagyl for now. I will be adding artemisinin in a week or two after I ramp up on the Zith and Flagyl. Adding in artemisinin is what knocked it out last time.
Of course Bruhner decides to use something else after I buy his books on artemisinin! At least I'll have another option if the artemisinin and other drug combos don't go for the KO this time around.
Oh yeah, if you go the Lariam route ask the doc for a big bottle of lorazepam to take the edge off the anxiety that comes with the Lariam. When we use Lariam, I rent pleasant movies, Cary Grant, etc. No scary movies or spooky novels. I clear my decks of responsibilities and tell my family to walk on egg shells for the first week. Otherwise I might bite some one's head off.
You are not alone by any means....It's nice to not be alone, but I'm sorry that the club seems so large!
Carol Ann
Posted by breathwork (Member # 567) on :
Oops...It's Schaller's books on artemisinin that I purchased...Not Bruhners...Sorry. Lyme brain strikes again.
Carol Ann
Posted by liz28 (Member # 4946) on :
Hi, sorry to hear you are on the mepron bandwagon. It's lucky to have a drug that can get you part of the way--but I also had constant relapses, and hope you find something that works for you.
What helped me is three rounds of the standard, boring treatment for plasmodium vivax, or El Diablo Malaria. Chloroquine followed by 2-3 weeks of primaquine (which requires a G6PD deficiency test, hence the difficulty of finding it in the States), then a week of rest, then repeat.
I also took lots of Nutricology artemisinin, which temporarily suppresses the level of malaria/babesia in the bloodstream.
Just plug "plasmodium vivax" or "relapsing malaria" into Google and you'll get a year's worth of reading material. Just be careful of all these macho safari websites that suggest you take 2 primaquine pills per day instead of one pill per day. That dosage is only for burly Army guys. The rest of us would turn into the Incredible Hulk.
Posted by Ticktoxic (Member # 6876) on :
Hey Liz.
Why is it that you are the only one on this board that Chloroquine/Primaquine seems to have worked for? I have talked to numerous people that have tried it but it didn't work for them, and they took it according to the directions of 15 mg base a day for 14 days....They didn't do the 4 on 2 off that you say worked for you. I don't know where you came up with that one?
The 30 mg a day base for Prima is not just for burly army guys...The CDC has revised their info backing the 30 mg base a day for adults because of relapses with the 15 mg dose.
It's probably also an important factor that you continued to take Mepron and Art with the C/P as well.
Posted by savebabe (Member # 9847) on :
Sorry to hear about your relapse.
I also relapsed and all of my old symptoms are starting to creep back. My llmd has me on 4tsp of Mepron, clarithromycin, Septra and art. Having another relapse is so discouraging. I guess all we can do is continue to treat it and keep beating the bugs back. Posted by liz28 (Member # 4946) on :
Hi, thanks for your message. It's lucky to have found it, as I only saw it by accident.
Actually, several people have written to say it helped. Most of them aren't here anymore. Some others have a rough reaction to primaquine, which is understandable.
One of those people sent me a stash, with a note saying it had helped her. I ended up using it to get better, instead of primaquine from a more underground source.
The 30mg may be recommended on websites, but as someone who went through the herx, and have had other people write in about it, I'd be cautious. People can experience severe symptoms the first week. I found that when I still had babesia, primaquine caused paralysis, mood swings, and spiking fevers. After the babesia was gone, it had no effect.
I took three rounds of chloroquine/primaquine. The chloroquine came from a nonprofit agency with excellent sources. But chloroquine is one of the most counterfeited drugs in the world--as is artemisinin. Malaria also develops resistance to it quickly. Counterfeiting is always a consideration with malaria drugs.
I stopped mepron long before trying chloroquine/primaquine, for the simple reason that it had stopped working. There was not much left to try. Artemisinin always worked as a short-term solution, but never stopped relapses. By the time I got to this alternative remedy, I was relapsing every day and experiencing convulsions, constant fever, swollen legs from kidney damage, mood swings, and extreme poverty from being unable to work. This is classic malaria stuff.
For this reason, this remedy is offered as an alternative for people with relapsing malaria/babesia, not as a cure-all. I was disabled for six years, and, as mentioned above, was at the end of the line. I'd been on mepron for two years to no avail. For people who are facing death, homelessness, or permanent disability, it seemed better to offer a remedy that cured me (I've been symptom-free for almost one year) than to not mention it because it might not be perfect.
I got this remedy from reading literally thousands of websites on malaria, especially plasmodium vivax. The four days on, two days off dosage is a variation on the dosage given to people with G6PD deficiency.
Because primaquine is not an antibiotic, and has a cumulative effect, it can be taken in doses as small as 30mg per week for months and still cure people. A good resource is the Bill & Melinda Gates Foundation. They have been running primaquine trials in Africa.
I took two days off because I couldn't handle primaquine every day. The side effects were too strong.
There does seem to be a lot of variation between strains. And I may have had malaria, not babesia. I caught the bug in a marshy area of Long Island, New York. The area is an international tourist hub, and nothing could be easier than a local mosquito munching off a visiting foreigner.
And finally, even if this sends you through the roof, it has to be said... and I thank the Internet for providing a considerable distance from which to say this.
Not everyone has been correctly diagnosed.
There, I said it, okay?
It's not a wonderful answer, God knows. But again, let me be clear on this. My symptoms were textbook malaria. A fever that spiked on a 24-hour cycle; constant sweats and flushing; convulsions; elevated liver enzymes; swollen spleen; early kidney damage; dizziness; vertigo; an immediate temporary improvement on artemisinin and mepron (for the first two years, anyway); constant exhaustion and oversleeping; headaches.
There are many other problems that mimic some, but not all, of these symptoms. For example, longterm antibiotics can cause extreme candida overgrowth. Bartonella causes fevers and exhaustion. Lyme patients aren't terrific housekeepers, so it could be a mundane staph or strep infection, or mold.
Longterm antibiotics also leach vitamins and minerals out of the system. Lowgrade systemic inflammation causes symptoms like fever and exhaustion.
There are many, many possibilities out there. And when you are on longterm antibiotics, it becomes harder and harder to tell them all apart.
For me, the key malaria/babesia symptom was convulsions every day.
Posted by HEATHERKISS (Member # 6789) on :
I saw my LLMD yesterday.
I'm on zith, malarone, art, herbs, minerals and vitamins.
We'll see if the malorone helps.
sooooooo tired.
Going to take a nap.
HK
Posted by HEATHERKISS (Member # 6789) on :
updates?
I'm on a high dose of Malorone. Having a hard time functioning. Not working and not exercising.
My husband wants me to get a job.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by treepatrol: After 4 months biaxin xl and mepron I had drug induced fevers high!!ones low ones fevers stopped when I went off mepron immeadiatley next day. Something to be aware of?
Posted by cmichaelo (Member # 5873) on :
Hi,
Sorry to hear about your situation.
Silly question, but how do you know for sure that it is Babesia that's causing these symptoms?
Could it not be something else? Lyme or toxin build up, for example.
Did you detox and are you still detoxing and what are you doing to address this?
What diet are you on?
Sorry for all the questions. I can imagine you have answered all this stuff before. Didn't we email once btw?
Michael
Posted by TerryK (Member # 8552) on :
HeatherKiss, sorry you are having such a hard time. I'm on my first round of babs treatment, same meds as you right now so I have no helpful advice but am following the discussion with interest. Will work up to mepron when my LLMD thinks I can tolerate it. I wish you success.
quote:breathwork: Now we have discovered that my gut doesn't process fats properly, a common issue with patients who have celiac disease as I do.
Have you tried lipase to help with digestion of fats? Sounds like I should consider taking lipase with my malarone and mepron in order to get better absorption since I don't absorb fats very well either.
I wonder if fat absorption could be why some people relapse? Maybe not getting enough of the meds to do the job because they can't absorb fats and therefore can't absorb malarone or mepron? I think I'll take some lipase with my malarone and see if I notice any difference.
Terry
Posted by cactus (Member # 7347) on :
Hi Heather,
I have 3 words: Babesia Relapses Stink!
(ok, really, I have more than 3 words, but those were the most important)
Just found out last week that I'm relapsing, too. I feel horrible, yuck. You and I seem to be on similar timelines, with me a few months behind you.
Are you doing anything different in your treatment this time? Different herbs/drugs? I remember last time you were on Mepron, can't remember if you tried malarone last time around?
I did 6 months of Mepron and various macrolides, then another 6 months of Malarone & Ketek.
This time around it will be omnicef, zith, mepron, plaquenil, artemisinin, and various supplements...
So far I've only added omnicef & zith, will add mepron in a few days & everything else in the following weeks. The zith is already kicking everything up, can't wait for the Mepron.
Hope you're feeling better soon! Keep us updated, it's great to compare notes/progress.
Back on the yellow brick road, Cactus
Posted by cactus (Member # 7347) on :
Terry, I'm going to try the lipase, too - great idea! Thanks!
Posted by TerryK (Member # 8552) on :
hi there cactus!! I looked around to see if I could find any contraindications for mepron or malarone and lipase but didn't see anything. If it does enhance fat absorption and fat absorption enhances mepron absorption then maybe it will make the herx a lot worse? Please be careful.
I see my ND tomorrow and I'll ask her what she thinks and mention it to my LLMD on June 5th. I'll let you know if they have anything interesting to say about it or if I notice anything. I'll start with the digestive enzyme with malarone on Friday unless I hear or find something that says it is contraindicated. Terry
Posted by valymemom (Member # 7076) on :
My son's llmd said he could take an omega 3 fish oil capsule with the mepron to help absorption.
Posted by TerryK (Member # 8552) on :
Thanks Valeymom, Does he recommends fish oil because it is a fatty acid and fats help mepron absorption?
Terry
Posted by wchun (Member # 11957) on :
Malorone seems to be working................. w/ biaxin and art.
I'm starting to come out of my funk
Posted by wchun (Member # 11957) on :
Malorone seems to be working................. w/ biaxin and art.
I'm starting to come out of my funk
Posted by Vanilla (Member # 11155) on :
Heather sorry about your relapse and know you are not alone.
I am on half a dose of Malarone and now that I have been on it for a while it does not seem to bother me any longer - the Malarone...
I hope you feel better soon!
Posted by tabbytamer (Member # 3159) on :
Finishing around 6 months (have to check notes) of Mepron/Zith/Art.
Night sweats have returned. Headaches still every 2 weeks. Mind clearer than before starting Mepron. But not as clear as it was four months ago.
Dizziness returning. But no stiff neck for months. So don't know if returning symptoms are Babs or Lyme related.
Posted by jasonsmith (Member # 10914) on :
quote:Originally posted by wchun: Malorone seems to be working................. w/ biaxin and art.
I'm starting to come out of my funk
How long have you been on this? How much of an improvement have you noticed with fatigue?
Thanks
Posted by wchun (Member # 11957) on :
Only one month. This is a babs relapse.
Before I was on mepron for 7 months and for a while it was 3 tsp a day. VERY KILLER.
It took over 7 months for the relapse to happen.
I'm going to look into all the malaria medicines and see if my LLMD will let me do rounds of them............
Heather
Posted by cactus (Member # 7347) on :
Heather, keep us posted on how you're doing...
Weird, but seems like I'm always a couple months behind you in the babs treatment/relapse world... so hearing that you're doing better already gives me a lot of hope!
Keep feeling better and better...
Posted by wchun (Member # 11957) on :
Oh good! At least you'll be feeling better soon. Happy days.
Posted by jasonsmith (Member # 10914) on :
I'm starting Dr. Zhang's Art tonight. They are 400mg a piece. I think I'll do one twice daily.
Posted by wchun (Member # 11957) on :
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
You'll beat this too!