I tried going back on mepron and by week four i was so depressed i could barely function, it was my second try, i was also on zith ...and it was starting to hurt my ears.
So she took me off everything...and told me to try artemesenin, curcumin and a few others. not sure if i should get a new llmd and maybe try iv's first before we give up...or go natural like she said.
I would imagine everyone has reactions to most antibiotics, she said we are running out of options because i reacted to most. most werent what i'd consider major reactions though..and I lasted a good amount of time on most of them. I'd have my moments though where i wanted to give up but I hung in there.
im so confused what to do now, i felt like the doc was giving up on me. Im only off everything a few days and already feel old symptoms returning. I was on antibiotics for 19 months so far.
Posted by Keebler (Member # 12673) on :
- What has been your LIVER SUPPORT through all this? -
Posted by Keebler (Member # 12673) on :
- I suggest you find an ILADS-educated LL ND (naturopathic doctor) to explore various options. See the link in the set below.
If you were not instructed by your doctor to incorporate liver support, for sure, the next LL doctor you find needs to know all this, whether LLMD or LL ND.
LIVER SUPPORT LINKS & and several HERXHEIMER support links, too.
Some KIDNEY support detail, too. -
Posted by ArtistDi (Member # 2297) on :
Check your email. Sent some ideas and names.
Di
Posted by Summer3 (Member # 35286) on :
I had a similar situation happen with my LLMD once. It was Mepron that did it as well.
Is she willing to change her mind if you tell her you aren't eager to go all natural yet? Maybe with closer follow-up or detoxing protocols.
Posted by poppy (Member # 5355) on :
Well, if you kept telling her you were reacting badly to all the meds she prescribed, it sounds like she listened to you and gave the only option that was left.
If you don't want oral meds, why would you consider IV, which will give an even greater reaction?
I would be wondering at this point if you are one of those who are very sensitive to meds (there is a test for this), or if you just didn't understand that meds that kill lyme bacteria will make your symptoms worse. Seems like it would be important to know which it was, because this same thing is going to happen again if you switch docs.
Posted by Lymetoo (Member # 743) on :
I got well without mepron. I used clindamycin/quinine and when that didn't get rid of it all, I finished it off with ART and zith. You could also use Biaxin. Can you take that one??
Which meds were "OK" with your body?
BTW, poppy is right. You're going to have "reactions" to all of them. And most of it will be herxing.
Posted by Pinelady (Member # 18524) on :
I agree with Lymetoo. I would just switch meds. If you got a lot worse it is usually because you were killing bugs...
Posted by tick battler (Member # 21113) on :
We all got better on herbal protcols after antibiotics didn't work for us. Mepron would almost get rid of our babesia but never could get it all. My young children did a year of mepron/zith and still the babesia came back. We knocked it out in less than a year using herbs.
tickbattler
Posted by WPinVA (Member # 33581) on :
Reactions/herxes are one thing but it's important to note that the disabling depression that can come with Mepron is NOT a herx. It's a dangerous side effect and needs to be taken very seriously.
Jennifer70, maybe you could ask her what her plan is? It could be that her plan is to try herbs for a while to give your body some break and then try abx again?
Art is actually pretty strong. It was the first thing I took for babs and recently my doc added it back in after I had to go off of Mepron. I had the depresson as well so I totally sympathize and wonder what's ahead for me as well.
I'm on Art along with Cryptolepis for the babs (as well as a bunch of abx for the Lyme). I don't feel like Art/Crypto is going to knock out the babs but they do keep it mostly at bay for the time being.
Posted by Jennifer70 (Member # 30280) on :
Thanks everyone. I never asked her to take me off...I just told her what i was experiencing and she told me to stop. I did fine on zith up until now..ive been on it a year and a half. Lately I've been experiencing more stomach issues and heart palps/ear pain. I was on doxy for about 7 or 8 mos and did ok .
I was on mino for a long time ...my skin started getting blotchy with brown spots and my nail turned grey so she took me off that. I've done coartem twice with pretty good results. I couldnt handle rifampin that threw me over the edge. The mepron was ok until week four, and i was starting to get that over the edge feeling.
I think she felt maybe my body needed a break. I understand Im going to react to many meds with herxing, that's why im so unsure whether im doing the right thing. how do u know when to stop if your body cant handle any more. Also I thought maybe IV might be less harsh on the stomach. Babesia herxing is very very difficult for me. I dont handle it well.
Thanks for your input. It helps to know that some have done well on natural therapies...and maybe we can revisit antibiotics at some point. I remember reading in Dr. B's material that at some point we all need IV to get well. We havent discussed IV yet for me. I just want to make sure im not going to take a huge leap backwards.
Posted by Jennifer70 (Member # 30280) on :
thanks Keebler...I made an apt with Naturopath that is very familiar with lyme. for liver support i've taken milk thistle.
Posted by poppy (Member # 5355) on :
It can be very hard to figure out what is going on during treatment and what to do about it. Have to keep reassessing to see where to go next, what to try. Or whether a break is needed.
Maybe try the herbal things she suggested, then decide whether to change direction, and whether to stick with this doc or move on. Treatment sure isn't a straight line, or at least it wasn't for me. Had to stop mepron once. And I think adding artemesinin to the other babesia drugs toward the end was what finally knocked that parasite for me. Or maybe I had just taken the drugs long enough. Hard to say.
Best of luck.
Is it possible that your doc is in NY or frightened by the situation there? This would be another explanation for her behavior.
[ 08-26-2012, 10:22 AM: Message edited by: poppy ]
Posted by lpkayak (Member # 5230) on :
buhner herbs work better than abx for me
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Jennifer70: I remember reading in Dr. B's material that at some point we all need IV to get well. We havent discussed IV yet for me. I just want to make sure im not going to take a huge leap backwards.
I never took IV.
I did my last year of treatment on natural protocols (Bionic 880, detox, parasite cleanses, KPU, etc.) and got well that way.
Babesia treatment is hard for everyone. Week four is about when it gets you, so that was right on target.
Posted by Jennifer70 (Member # 30280) on :
Six do you think I should have been more adamant that i wanted to push through. I told her i would if i could back off for a few days then start again but she said no we'll just take you off.
So glad to hear nautral therapies worked for so many of you. Posted by hopeful4 (Member # 8486) on :
Have you been tested for the genetic mutations that play a role in the methylation cycle? If you have such a genetic mutation it is more difficult for your body to metabolize toxins. So milk thistle alone would not be enough. If you had a genetic mutation you would also need support for the methylation cycle, such as MTHFR supplementation. Find more info at http://mthfr.net
Detoxification can also be assisted by other means, such as Epsom salts baths, lemon water, chlorella, Burbur (by Nutramedix), far infrared sauna, etc. Perhaps you have already tried many of these.
Best wishes.
Posted by Jennifer70 (Member # 30280) on :
Thanks hopeful. I also use magnesium, alka seltzer gold, and lemon water. havent tried the sauna or other methods.
Most of my treatment I wasnt on milk thistle...i asked about adding it and they told me ok. Liver support wasnt really mentioned to me until i read about it here and asked my doctor.
Posted by Pinelady (Member # 18524) on :
Plant sourced Vitamin E and Ester C protected my liver and gallbladder no problems.
![[confused]](graemlins/confused.gif)
19 months so far.
![[Frown]](frown.gif)
Week four is about when it gets you, so that was right on target.
![[Smile]](smile.gif)