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Ivermectin
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Lyme Disease
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IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/18/2015 5:03 PM (GMT 0)
I'm supposed to start this today. Anyone have any words of advice or is it a pretty benign thing?
Pirouette
Veteran Member
Joined : Mar 2014
Posts : 6235
Posted 7/18/2015 5:09 PM (GMT 0)
My advice is you wait until you have been on the Rocephin for a little while longer and are past the peak of the herxing. Your MD is bombarding your poor little body w/ too much, IMO. Let it get accustomed to the abx for at least a couple wks and then add new things one at a time. Otherwise, it's also too difficult to know what reactions mean.
p
IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/18/2015 5:24 PM (GMT 0)
Hm. Didn't think of it like that. So ivermectin can cause hexring too? I figured at worst it would just give me diarrhea since it's for parasites. Which I already have lol.
I've only been on rocephin for 2 weeks. I hear the herxing from it really starts to get crazy at 4 weeks. If I feel this bad already I'm really going to be in for it. Crap.
Pirouette
Veteran Member
Joined : Mar 2014
Posts : 6235
Posted 7/18/2015 5:34 PM (GMT 0)
Parasite die off can be INTENSE. Plus, you've got to get rid of the debris after killing it… And it's all going on in your challenged GI.
Well, my herxing got better at 4 wks. I still have cognitive problems but the extreme psycho-neuro mess did lighten up by the 4th week, which was good because I was going off the deep end and fast.
-p
summer16
Veteran Member
Joined : Jul 2012
Posts : 1417
Posted 7/18/2015 5:44 PM (GMT 0)
Is there a test to see if you have parasites? Is ivermectin the only anti-parasitic one can take?
Patty
IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/18/2015 5:45 PM (GMT 0)
I feel really lucky that my experience has been mostly physical so far. I'm not counting on it staying that way. I've struggled with some really intense psychological stuff, so I definitely feel for you P. Funny how it varies so vastly for all of us. Keeps us on our toes.
Hm. My doctors thoughts were treating for parasites would hopefully fix some of my gut stuff. If my issues are from parasites then wouldn't it be a good thing to just get it over with and move on?? I did a stool test and it only showed candida. He said it didn't matter because that test doesn't always catch it. I did a spit test too.
Pirouette
Veteran Member
Joined : Mar 2014
Posts : 6235
Posted 7/18/2015 7:35 PM (GMT 0)
I totally agree that parasites are affecting your gut health, you just need to take your tx one step at a time. Trust me, I have had to start over because I didn't do it and things get overcomplicated in a heartbeat. Yes, it would have been better to eliminate parasites first, but you started the abx and that's fine. Just give yourself maybe another several days and then do the parasite cleanse.
Regarding yeast/fungal overgrowth--spit tests are bogus, from my research and the stool testing could miss a lot. But I do value the Doctor's Data tests because it indicates which natural or Rx antifungals react to which y/f it finds. But y/f lives throughout your body and may not be detectible and you could have strains the tests don't look for (typical!) The best way to know if you have y/f overgrowth is through sx (clinically) and how you react to antifungals.
-p
IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/18/2015 7:37 PM (GMT 0)
My whole treatment plan besides the rocephin is all for gut health. My doc really wants my gut to be in a better place before doing much else. He's frustrated that nothing is working is why he decided parasite treatment would be worth a try.
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/18/2015 7:40 PM (GMT 0)
I had a monster monster monster herx on ivermectin. I'm still on it and I still react to it but I finally turned the corner on the monster herxes about
a month and a half ago.
Everyone is different, and has different pathogen make up. For me, it hit my thing to the core. I would start slow and careful just to be safe.
Good luck! keep us posted on how it goes.
@summer16 There are a bunch of other anti-parasitics, like albendazole (which I'm on), but also things like alinia. I think Bryan Rosner has a solid chapter in his book about
anti-parasitics and lyme, I think it can be found online. Ivermectin seems to have a nice side effect profile and seems relatively safe given its possible effectiveness. Parasite tests are iffy and are notorious for missing a lot of stuff.
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/18/2015 7:42 PM (GMT 0)
here we go: http://lymebook.com/ivermectin-albendazole-diethylcarbamazine-alinia-mimosa-pudica
Btw IHL, I think exploring the parasite angle is smart and ivermectin is a great drug to use for this.
Traveler
Elite Member
Joined : May 2007
Posts : 36573
Posted 7/18/2015 7:58 PM (GMT 0)
And I would agree with P on this too - your body is too fragile to take much without pushing it to or over the edge again - and you need to avoid that. The Rocephin hit you pretty hard - at least find the dose that you tolerate of that for a couple of weeks before trying to do more in your treatments.
I've heard (well, read - LOL!) a LOT of people say that they wish they had slowed down their treatments. It's very frustrating for it to move so slowly, but if we don't, we simply overload the body and it can only take so much. So take it all super slow.
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/18/2015 8:08 PM (GMT 0)
Traveler, I can't tell you how much it helps to have that reiterated, the importance of going slow, especially if a med is already hitting you hard. Sometimes you need to ease up or take a break.
I tend to be a full on kind of person, hi ho let's nail this sucker and be done! I'm so freakin sick of this thing! but nope, it is a marathon and speed and overambition can really put you in a bad spot. And it is very very important to remember treating these things is a marathon and finding the right pacing for one's own body, but it is very hard for ME to remember that!!
Pirouette
Veteran Member
Joined : Mar 2014
Posts : 6235
Posted 7/18/2015 8:13 PM (GMT 0)
"My whole treatment plan besides the rocephin is all for gut health. My doc really wants my gut to be in a better place before doing much else. He's frustrated that nothing is working is why he decided parasite treatment would be worth a try."
I am really liking your MD!! I treated viral loads, fungal loads and rebuilt my gut for a few months before I took anything to treat lyme & co… 70% of your immune system IS your gut, so unless it's healthy and receptive and functioning, all our expensive treatment that is so hard on us is all for nothing.
I don't know if he's tested for specific parasites but if the Ivermectin doesn't do it, there are several really good parasite cleanses that have several different herbs that really knocked me into next week… but very effective. Amazon.com has quite a few.
-p
IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/18/2015 8:36 PM (GMT 0)
I'm totally skipping the parasite business for now. I'm so glad I posted. I'm too sick to think super clearly and that's usually when I get into trouble. I just look at my treatment plan paper and do what I'm supposed to for that day and then wonder why the heck I feel so bad. I LOVE the forum for this very reason.
I'm liking my doctor more and more. He way underestimated my level of suffering when I first started seeing him. I'm sure he's used of all his patients saying that they feel like they are dying because let's face it- it really does feel like that. So I think he had a hard time filtering what was really a big issue and what wasn't to give me proper care. When someone has 60 symptoms it can get confusing.
He is a naturopath so he can appreciate the whole body perspective that most MDs don't really get. First thing he said when he saw me was "oh crap, you're really really skinny. We have to deal with your gut issues before we can continue". The point of the abx right now is to feel better from them, not to herx. I'm backing way down. I felt better up until... yesterday and the night before.
Anyway. His hope is that I can get a picc placement covered for nutritional therapy. It's obvious that I'm losing weight and my blood work shows nutrient deficiency getting worse and worse. My records show I've tried every single nausea med known to man and I'm still losing weight anyway. So I'm hoping I can get that covered and it's none of their business if I put rocephin through it too.
I'll figure out what my body needs. I'm in no rush at all. Rushing makes everything worse. I've had enough setbacks so far. I've learned my lesson time and time again. I'm catching on that my body has a delayed reaction at a rate of about
3 or 4 days. With my mast cell stuff and all that I have to be careful even starting new supplements.
So. I've just got to suffer through this herx and hope it doesn't last past tuesday. I have to get my new hep lock placed and it's my next rocephin day. In the meantime I'll be detoxing like a MTHFR! hahaha any opportunity for a pun. By the way I finally found the right kind of b vitamins and folate for my MTHFR. I think that's really helped me detox too.
BrokenAldo
New Member
Joined : Jun 2015
Posts : 11
Posted 7/19/2015 12:20 AM (GMT 0)
Credit to LottaAnsy76 for posting this link back in 2012
Pretty informative site,and still works...I've been thinking about
trying it,too.
lymetherollercoaster.blogspot.com/2011/04/lyme-disease-getting-better-with.html
teragram
Veteran Member
Joined : May 2013
Posts : 4039
Posted 7/19/2015 3:17 AM (GMT 0)
I am SO glad I read this, bc I think I have parasites, but have been reluctant to start "dewormer" (sorry, they use Ivermectin for dogs too, LOL), because of the potential herx.
I think I'm having some success with activated charcoal.
You might try that too IHL.
Margaret
daddylonglegs
Regular Member
Joined : Jun 2015
Posts : 117
Posted 7/19/2015 3:26 AM (GMT 0)
I've read where people have been on ivermectin for 20+ years... its a very safe drug from what i have gathered... Ivermectin was found in a soil sample in Japan many decades ago... insane to think what other life saving drugs are just waiting to be found in the soil. I've been tempted to try it and see what happens (people use it for Babesia with some good results...it can be pulsed).
SLML
Regular Member
Joined : Jul 2012
Posts : 296
Posted 7/19/2015 3:26 AM (GMT 0)
Curious IHL & others who have a prescript
ion to Ivermectin - how many days in a row does your doctor have you taking it?
IHL
Veteran Member
Joined : Aug 2014
Posts : 2167
Posted 7/19/2015 3:35 AM (GMT 0)
Mine says 3 days a week.
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/19/2015 3:44 AM (GMT 0)
2 days. I won't bring up dosage as I need to check the forum rules but not sure we are allowed to specify.
Daddylonglegs, love that you bring up that story, ivermectin is a fascinating drug with a fascinating holy crap we got so randomly lucky and hit the jackpot origin story. And exactly, what are all those possible drugs waiting to be discovered from nature?!
SLML
Regular Member
Joined : Jul 2012
Posts : 296
Posted 7/19/2015 6:12 AM (GMT 0)
Thanks guys!
daddylonglegs
Regular Member
Joined : Jun 2015
Posts : 117
Posted 7/19/2015 6:07 PM (GMT 0)
sebreg-
Just start eating soil like me ;) Sooner or later you'll be cured (or not). The cost to bring a new drug to the market is so much more expensive then it once was that I doubt there is much push to dig up soil samples all over the globe and look for new drugs...
Seems like its usually 2mg/6mg/12mg...
summer16
Veteran Member
Joined : Jul 2012
Posts : 1417
Posted 7/20/2015 2:56 PM (GMT 0)
Thanks sebreg and all.
Patty
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/20/2015 4:05 PM (GMT 0)
Absolutely Patty! really happy to share, ivermectin has been great for me and brought me to a new level, it really killed me with herxing for a long time. But I'm finally at a point now where I don't herx on this med anymore, and think I've reached a point of diminishing returns. I'd like to stay on it for a while longer but this llnd I just started seeing is having me expand my protocol so the timing is perfect for me, I'm finally ready to keep moving forward. I could not have added anything to my protocol before due to the severe herxes I was dealing with from ivermectin.
Klinghardt does massive doses of ivermectin, something in the ballpark of 48mg daily for two weeks? yikes! I could never have handled that. I was initially dosing once a week and that was crushing, I would herx all week from that one dose! but it really ended up working out for me in the end, and I now dose twice a week. My doc seems to say it has a long half life so you don't need to dose every day. My doc is also pretty conservative when it comes to dosing, other docs are more aggressive but not in the ballpark of Klinghardt, he is on the other end of the spectrum but his high dosing is for a short period.
Daddylonglegs, isn't that tragic? it's just so hard to fund these ventures, and everything seems to be done synthetically from scratch in the lab nowadays. Synthetic chemistry is a huge part of medicine and has a huge role and great benefits, but we need to explore and investigate all logical avenues. To me, ivermectin is a great example of the importance of thoroughly investigating nature and its complex chemical compounds and using those complex compounds as jumping off points for possible therapies. Evolution has allowed for the creation of fascinating amazing complex compounds that could never be dreamed of or created in the lab. But if you figure out what these nature compounds are and then manipulate them in the laboratory you can end up with some possibly great new therapies.
This is some neat info here, just found the article, haven't read it all but very interesting:
http://courses.umass.edu/mic590s/2009/Reading/Omura2004.pdf
Dancingbear*
Veteran Member
Joined : Oct 2014
Posts : 556
Posted 7/20/2015 8:09 PM (GMT 0)
IHL, how are you doing today?
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