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» LymeNet Flash » Questions and Discussion » Medical Questions » babesia patients please respond

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Author Topic: babesia patients please respond
trailsgrl
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Hi,

Most of you know my story, but in an effort to elicit as much relevant info as I can about what I am experiencing, I am trying to reach babesia patients who are being treated with Mepron/Zith.

I have been off those meds for 9 days and still experiencing MAJOR dizziness that increases during the day. Also experienced are low grade fevers, upper right quad pain, and allover headache. I used to have sweats and chills. Not any more.

I did not have the symptoms before starting my mepron/zith.

Anyone else experience this with these particular drugs/infection?

When I say extreme dizziness, I am saying I can not keep my eyes on the page, I have to walk aided, no driving, etc.

Did you stop treatment and if so, what happened? Did you continue to have the dizziness? Did you ever get better?

Desperate for answers,
Trails


Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Nal
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First off, did you get ahold of Dr M finally? Secondly, it really, really sounds like you are still herxing to me. differen't meds affect everyone differently. Im having MAJOR herx symptoms with the diflucan and flagyl. I don't take these everyday (only a couple times a week) and yet I can herx for days!!

I was on Mepron with Zithro. I was only on it for a couple weeks and didn't notice any difference. I switched to levaquin and OMG-I thought I was going to die!!! Talk about a herx!!! Dr B actually wants to put me back on it but at a much lower dose.

Ive been told that you can experience symptoms during a herx that you may not normally have. Man, you really need to talk to Dr M. Please let me know if I can help at all!!! Dr M is a good guy but both he and Dr B treat aggressively. I finally had to let Dr B know that I couldn't take that much aggression and he has finally backed way down!!!!! He's awesome. Always anwers my questions and always emails me back. I have his cell number for emergencies-what dr gives out their cell number??

Seriously, talk to Dr M-MAKE HIM TALK TO YOU!!!!! All my best.

Nancy
ps. I don't think Anne is the greatest at relaying messages either. She's not always the best at returning calls so not sure how long she will last. After all, these dr's are only getting the messages she gives to them.


Posts: 1594 | From Colorado | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
trailsgrl
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Thanks nal, I am gonna emial you privately. Yes, I got Dr M but he was really not helpful.

Anyone else with these symptoms and these meds?



Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Laurie
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I don't know about the upper right quad pain, but could you possibly have a middle ear infection? Headache, fever...'tis the season for allergies and for our ears, noses & throats to go crazy on us. Do you have any Antivert? It's an Rx but I think it's pretty benign as a med. I take it when I get bout of dizziness...not sure if mine is from some Lyme stuff, or from fluid in the ears that builds up from time to time.
(PS What is OMG?)

Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
HEATHERKISS
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Oh my God
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
surg
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I just had all these reactions last week on mepron and zith and they went away this week. I think it was a herx. A herx from what I don't know though, babesia or lyme? It was really bad last week; dizzyness, fatigue, anxiety, weak, shaking, fevers, confusion, memory loss, out of my mind confusion for one day. Now this week I feel better than I have in 3 years. Crazy disease!
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
trailsgrl
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Surg! how did you manage through it?

Did you call your LLMD? Did they have good advice?

Did you stay on the meds?

As I said...been OFF them for 9 days now.
Still herxing or dying or freaking or whatever.
Let me know.
Looking forward to the days you are having!
Trails


Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
surg
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I managed through it mentally because I have a really good online support group. I would not survive without them. I stopped the meds for half a day and then went back on them 2/3 strength. Now I am back to full dose.

I didn't call my LLMD cause I know what he would say. Don't stop.

That bad night I did think I was dying. I had a panic attack for 9 hours straight. But its either that or be sick the rest of my life so I tough it out. I really do believe I will be well one day.


Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
pattiecake
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My dauhter has been on that combo for a week and has had vertigo, neck pain, back pain, constant 99.5ish temp and all over feeling terrible. She cannot go to school.
sounds like the same response,
patticake

Posts: 687 | From PA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
TheCrimeOfLyme
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I did Mepron ( full dose) for two weeks and that was it.

I thought i was going to die.

If I closed my eyes, I darn near passed out. But I had vertigo constantly on it anyways. I cried, I was majorly confused- I was just not well.

I had to drop down to 1/2 a tsp a day for two months. I never COULD build back up on that stuff- way too much for me.

And i was MEAN on it. Very very mean.

The vertigo lasted for over a month for me AFTER I stopped it completely.

I'll never touch it again.


Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
shazdancer
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Hi trailsgrl,

I took Mepron/Zith for 6 weeks. I am off it now for almost 4 weeks. I am getting better each day, with the biggest change in my energy level, which has improved enormously. I have pushed myself a lot this past month, and I never would have made it if I had still been on the meds (big herx on week 4), or before I took them.

I got woozy on the meds (though not as badly as you have), but it is going away, and I am taking acidophilus to help re-balance my good bacteria levels, because I feel worse when I each yeasts or sugars.

I have been told to give it a full 6 weeks to see exactly how much ground is gained, but if I were you, and my symptoms were as bad or worse than before or during the meds, I would be calling my doctor.

Take care,
Shaz


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beachcomber
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Mepron/Zithromax veteran here.

I experienced severe dizzyness, vertigo, chills, fever and rapid weight loss. My BP would drop so low that I would black out. Usually happened in the grocery store, where I would manage to clear a shelf on my way down. I also could not drive at all.

My MD put me on Mepron and I started to feel better in 4 days. The following week I started to feel ill again. By week 3 or 4 I was in herx hell. This lasted for a couple of months at least. By month 4 I was starting feel like a human being again. I started driving and was able to work and even exercise.

I stayed on Mepron, with off and on courses of Zith, for 13 months. It made all the difference in the world for me. I have been off both since mid-April and still holding pretty steady.

I would go on Mepron again if I had to. I am so hopeful and pretty confident that I won't have to because I stuck it out. I never took more than a a day or two break from the Mepron, only from Zith due to gastro issues.

If you can hang in there, it will get better. The herx was amazing! but, the benefits outweigh the worst of it, at least for me.

Hope this helps.

Bc


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sapphire
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be sure whil4e on mepron that you are doing liver support at the same time such as milk thistle or other liver cleansing herbs
because mepron is a drug that can affect the liver

drink plenty of water and other fluids( at least 3 quarts or liters) every day , it helps to wash the toxins out of the body and maybe will help some of the herx symptoms


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Bill ATL
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I am on Zith and Mino....and because of my vibrations in my face and arm, was prescribed Mepron and was told to add to the current Zith/Mino combo.

I, like TheCrimeofLyme above, noticed bad emotional changes. Crying, becoming mean, which REALLY shocked me. I stopped it immediately once I read a post that noted a similar response from someone. I haven't had those emotional episodes since.

Not sure whether I'll re-start or not. Maybe by itself(?)


Posts: 80 | From ATLantic Seaboard | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
trailsgrl
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So much to respond to! What are you guys, like NIGHT TIME fairies that swoop in and answer my questions and make me feel better!? Love you all for that so much thanks!

Bill- NOOOOOO! Do not take Mepron by itself. It has been proven in the medical articles to cause resistant strains of babs. I will find those articles for you if you need them. They are not quacky research but MAINSTREAM medical trials.

Surg- I need to get into that supprt group. wanna tell me about them?

Pattiecake- I am so sad to hear when moms and kids are suffering. Maybe your daughter will feel better soon as some of these guys have?

Crime-I think I may be like you and NOT be able to tolerate it. I have been mean too. Even on this board, I have been cranky. Sorry everyone, it's the meds!

Shaz- that was ME! 4 weeks exactly! I guess this means I have a big load of babs and/or lyme in there! Very helpful to hear that you are stopped meds for now too!

BC-I can NOT NOT NOT believe you stayed on this stuff for a freakin year and more! You are a STRONG woman or man! You deserve a nuclear yellow gold medal!

sapphire- My liver was totally toxed out. It was actually HURTING! I have yet to hear of liver PAIN from anyone else, but that is what I have. We thought it was some sludge in the gallbladder but now I am off the meds and detoxing, the liver pain is 80% better. That doesnt usually happen with gallbladder problems. ALso my blood work showed elevated LFT's but not really obstruction, which can actually be seen by blood work. amazing.
Question for you: should you detox liver WHILE taking massive meds....isnt that too much for it? confused about that one.

I will give update as to how I am doing later today....I think I am getting better, but I can't tell till after 11am!
Trails


Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
trailsgrl
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I am getting better! I can NOT NOT NOT believe it, can you???? It is the most amazing feeling! It is difficult to discribe. Like I am coming out the other side of the scariest horror ride.

I did not have any fevers today. I had ONLY minor dizziness, which before would have been major. I did not fall down or feel my throat closing. I did not sweat like a pig. Do they sweat anyway? I am MUCH clearer in my head and have TONS of energy. I'd say the upper right quad pain is 90% better!

This means my liver was definitely over worked. That was showing in bloodwork too.

But I still do not know if this was a herx or a slow toxic build up in the liver. There is no way to know this for sure, I understand that.

So, no mepron/zith since LAST monday....that makes it...11 days if you count today.

11 days off meds and only felt better today, for those of you still waiting to feel better!

I don't know if I will go back on meds yet. Have a phone consult in about 2 weeks with my new LLMD in california. Hope he can help figure out the next step!

Keep posting though, I would like to know more about your experiences and I think it helps others to see if we experienced some of the same herx symptoms on these particular meds.

Thanks for helping me thru this horror ride, so nice to be on the other side!
Trails


Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Lymied
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Hi Trails - Glad to see you are coming out of the Mepron induced hell you were enduring...I only took one bottle over a months time...it was my first month of treatment for lyme, babs, and ehrlichia...so of course targeting the babs first...

I had moments where my vision would completely blur and I would almost do a face plant...very scary...but it improved and so far I think the babs is gone...many say you need to be treated for months...I guess I have lucked out so far and have not had to retreat yet...


Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
trailsgrl
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Yeah, One bottle in one month was me too.

SURG! I just made the connection and now I know that I am moving over to YOUR LLMD that you said would probably not let you stop babs treatment due to severe herx!

CRUD. I want a good doc, but I dont wanna hurt myself trying to get well. I dont know how to deal with this. It is really upsetting!

Surg, can we e-mail you?
Trails
ps keep up the responses to my little poll if you can, I am still interested in who has these symptoms.


Posts: 196 | From Mesilla, NM USA | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
   

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