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» LymeNet Flash » Questions and Discussion » General Support » Babesia Buddies (Page 2)

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Author Topic: Babesia Buddies
Bugg
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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!
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lymie_in_md
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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

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AZURE WISH
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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.

--------------------
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Monica922
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Hi
My recovery seems to be going at a snails pace if that helps [Smile] 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 [Smile] 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

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wiserforit
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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


[Frown]

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AZURE WISH
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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! [Eek!]

wiserforit - [group hug] 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.

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Monica922
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Yes I am stuck everyday and I hate it [Smile] 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.

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Munch
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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?

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Amanda
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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

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joysie
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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?

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Monica922
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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.

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Bugg
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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....

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Amanda
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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

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Amanda
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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

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joysie
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Thanks Amanda , I always like to hear from others. As much as I trust my LLMD it still helps. [Smile]
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Geneal
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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. [shake]

Maybe they should wait for me to start the mepron. [Eek!]

Hugs,

Geneal

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merrygirl
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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

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Monica922
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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 [Smile]

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.

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Geneal
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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. [shake]

Now......I am trying to mentally prepare for the nasty mouth taste

That will be waking me up in the middle of the night. [Eek!]

Melissa.....glad to see a diagnosis and the company. [Smile]

Hugs,

Geneal

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Draba
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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.

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Amanda
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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

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Monica922
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Yes mepron is a crazy drug [Smile] I am taking it with peanut butter now.
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CD57
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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!

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Draba
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Mepron with peanut butter?????? [Eek!] He he he he he. That sounds awful. I'll have to try it if I go back on mepron. [Big Grin]

--------------------
Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy.

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Monica922
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It is awful Draba [Smile]
I am off for an ultrasound....think positive.

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merrygirl
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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. [puke] I have a spoonful of peanut butter before and ater I take it.

How is everyone doing?

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Monica922
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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

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merrygirl
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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. [Eek!]


Melissa

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Monica922
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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?

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merrygirl
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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

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Monica922
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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 [Smile]

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merrygirl
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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 [bow] 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.
[sleepy]

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wiserforit
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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.

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Monica922
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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!

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Monica922
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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!
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AZURE WISH
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monica - sorry you had to stop the rocephin. [Frown]
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)?

--------------------
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merrygirl
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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!!!
[woohoo]
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

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Monica922
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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.

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Monica922
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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.

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BJK
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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-

http://www.drugdigest.org/DD/DVH/Uses/0,3915,5010%7CMalarone,00.html

You just type in the drug name on the left.

Note- this isnt a Lyme focused site so Its just about the med, It may help you understand whats the med and whats the herx or infection.

I've found it useful, particularly with the side affects lists and drug interactions( I take so many).

When I see a drug interation that applies to me I call my pharmasist (not my doc) to ask what the specific reaction may be.

I recently started trying to create a table to help me and others in sorting out the symptoms. This isnt diagnostic and is a "work in progress"

I added it to my website links and continue to update it as I learn more.

http://www.geocities.com/whiteakita22/symtomstable

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 [Smile] , as my babs reatment progresses i'll be checking back from time to time.

BJK

--------------------
BJK

Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally

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merrygirl
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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

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Monica922
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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

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Geneal
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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. [Smile]

Hugs,

Geneal

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Monica922
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Hi Geneal
Yes when I first went on mepron I had dreams that would make Steven King cry [Smile] 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.

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Geneal
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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

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Health
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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

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Monica922
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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?

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Geneal
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My Rx for mepron is 4-6 months.

Hope that gets it this time.

Hugs,

Geneal

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Geneal
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Anybody else in the middle of a babesia herx?

Day 31 and I feel like I did before I was diagnosed! [shake]

Body shakes, headache, fever, increased air hunger, brain fog.....

Yikes!!!!

They say that misery loves company.....any takers?

Hugs,

Geneal

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merrygirl
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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

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Monica922
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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?

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Geneal
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Monica,

What meds are you on?

I get jaw pain with babesia.

Felt worse today....Terrible brain fog, difficulty speaking,

Rib pain, swollen lymph glands under arms.....breasts hurt, joint pain. [Eek!]

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. [Frown]

Most days I handle it well....today just isn't one of them.

Hugs,

Geneal

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Monica922
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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.

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Geneal
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Up for us miserable mepron takers. [Big Grin]

Hugs,

Geneal

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wiserforit
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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

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Monica922
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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!

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Geneal
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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. [shake]

Hugs,

Geneal

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Monica922
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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

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CamB
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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.

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Geneal
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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

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Monica922
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I even used the crappy Quest Lab and came positive every time. Babs is hard to get rid of!
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herbalfrog
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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

--------------------
Else

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Monica922
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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

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BJK
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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 [Smile]

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

--------------------
BJK

Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally

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Clarissa
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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

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Clarissa

Because I knew you:
I have been changed for good.

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Monica922
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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.

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Clarissa
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That's what I thought!

Thanks for the information, Monica.

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Clarissa

Because I knew you:
I have been changed for good.

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creativeguy
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[ 24. July 2008, 02:02 PM: Message edited by: creativeguy ]

--------------------
"Soylent Green is lymies!!"
- New IDSA Sci-Fi Film

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trish4
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Hey everyone [Wink] Well it looks like Ill be joining the Babesia club. Just got my positive today. [woohoo] 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 [Eek!]
No night sweats though even though I would have much muuuchh rather had that symptom than the breathing ones lol

Will keep everyone updated.

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Monica922
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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 [Smile] It also gave me horrific nightmares at first. It will stop so do not worry if you get them.
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Geneal
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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. [shake]

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

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Monica922
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It should not come back that fast? I have recently had some air hunger issues myself. Does anything else cause air hunger?
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tic chick
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Member # 9156

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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? [confused]
Tic

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Adversity is the diamond dust heaven polishes it's jewels with. Robert Leighton

Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time all faiths welcome!

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Dawn in VA
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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.

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(The ole disclaimer: I'm not a doctor.)

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trish4
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Member # 14156

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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 ]

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