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Post by Kelly (KB69) on Oct 24, 2017 22:03:19 GMT
Hi Trav,
I hope you and your husband are doing well. I wanted to ask you about your experience transitioning from ABX to herbs.
I treated Babesia, Bartonella and Lyme for the last year with oral antibiotics. I successfully (fingers crossed) healed the Babesia. No symptoms for many months after many months of Mepron and Zith. But, I have yet to really address Lyme/Bartonella as I think Babesia was getting in the way of any effective targeting of those two infections.
My LLMD just switched me to IM Bicillin shots because I was no longer able to tolerate the oral antibiotics due to severe stomach upset. I have had 2 shots at 1.2 billion units. The first shot stirred up my neuro symptoms. In retrospect, I see that it was a herx, and it lasted a long time, and I likely should have paused before the second shot. But, I didn't. The last shot was one week ago, and I have been herxing constantly since that injection. It just won't end.
The problem with Bicillin is that once it is injected, you can't stop it or decrease the dosage. It's in there. So, now I'm trying to ride out the worst neuro herx I've ever had -- tingling, burning, surging anxiety, inner vibration. I just can't do it anymore. I can't herx like this anymore.
I know you had difficulty tolerating ABX and switched to herbs. Was it this kind of experience that moved you in that direction? I only have a single, heterogenous MTHFR mutation, and my LLMD said it wasn't serious. I've just started addressing adrenal dysfunction with DHEA and gut health with different antibiotics, but is there anything else that would be standing in my way of detoxing? I just can't stop herxing on ABX despite all the detoxing I do (and learned from so many of your posts).
I think it's time to switch entirely to herbals. But, do you think I will just end up herxing forever on those, too?
Would love your thoughts. Thanks so much, Kelly
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Post by Randy on Oct 26, 2017 5:47:52 GMT
Im using herbs and Im treating bart and myco and I am having a super hard time with herxing. However I have seen many folks switch to herbs and do well. But they can be strong, as I am learning.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Oct 26, 2017 12:10:36 GMT
Thanks, Randy. I'm sorry that you're having a tough time with herxing, too.
I'm beginning to wonder if this is less of a question of how I treat (ABX vs. herbs) and more of a question of how my body processes die-off? Or, in the end, is herxing just inevitable?
The neuro herxes I have been having are so bewildering, lots of anxiety, tingling and vibrating, and I feel like I'm losing my mind. I just don't know how long I can continue to go through this.
I do a lot to detox (thanks to many tips from Traveler and others). And, I have been tested for the MTHFR mutation, which I only have a mild, heterozygous version of. I just started treating with 5 mg of DHEA to address adrenal dysfunction. Maybe there's nothing more that can be done.
I wonder, with herbs, if the ability to better fine-tune dosage is helpful in mitigating herxes? What are you using for Bart? I started to add Sida to my Bicillin shots, but halted at 5 drops x 2 per day due to the herx, which could have been both due to Bicillin and Sida. Maybe that's why this one is so bad and long-lasting.
Hope you're beginning to feel better.
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Post by Admin/ Traveler on Oct 26, 2017 12:21:41 GMT
Hi Kelly! Welcome to our little community! I'm so very sorry that I wasn't around sooner, and that you are having such a very hard time!! The weather changes are driving my activities right now with the garden and other things that must be done before it gets really cold! And, a special thanks to Randy for stepping in and answering this post as well!!!
Yes, it was an experience like you are going through, although I had a full 12 months of herxing that continued to get worse to the point of having seizures and late stage dementia symptoms. Once I started learning what was going on during herxing, I couldn't imagine how my body could heal at all with that going on.
I would suggest you work with binders a lot right now. They are the quickest way to stop the reactions/herxing. I have a special love for activated charcoal, because it's what worked best for me, but there are some other good binders out there that others have found quite effective for them as well. The binders will bind to the abx that's in your blood still.
I would encourage you to do as much other detoxing as you can as well - that way you are working on not only stopping the reaction by reducing the abx in your blood, but reducing the cytokines and such that are driving the herxing in that way. Make detoxing your 'job' right now and be diligent at your 'job' until this slows down significantly.
As Randy pointed out, herbals can be very potent as well, but the most awesome part of herbals is that we have complete control - and it's not at all like getting an abx injection because we are in control of the doses. Still, I would very much suggest that you always start off on very low doses with the herbs, and build up slowly with each individual herb to find your tolerance level.
For example, I made a '4 thieves' tincture and started taking it. The 'normal' dose is 1 teaspoon, and yet when I started out on 5 drops, even though I'm still detoxing away, it kicked my rear around the block a couple of times!!!ACK! So, after day two (when I realized things were only getting worse), I lowered my dose to 4 drops for one day (didn't reduce the herxing enough), then lowered it to 3 drops to get the herxing to slow down to a more tolerable level by day two on that dose. I stayed at 3 drops for 5 days, the herxing slowed and then stopped. I'm now on a whole 4 drops in the morning still, but I've been able to add in 1 drop in the evenings as well now.
Do be sure to continue to do all you can to help your body get out of this herx from both angles to stop the herxing as soon as possible, and let us know how you are doing, please! I hope this is helpful!
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Post by Admin/ Traveler on Oct 26, 2017 12:26:20 GMT
Thanks, Randy. I'm sorry that you're having a tough time with herxing, too. I'm beginning to wonder if this is less of a question of how I treat (ABX vs. herbs) and more of a question of how my body processes die-off? Or, in the end, is herxing just inevitable? The neuro herxes I have been having are so bewildering, lots of anxiety, tingling and vibrating, and I feel like I'm losing my mind. I just don't know how long I can continue to go through this. I do a lot to detox (thanks to many tips from Traveler and others). And, I have been tested for the MTHFR mutation, which I only have a mild, heterozygous version of. I just started treating with 5 mg of DHEA to address adrenal dysfunction. Maybe there's nothing more that can be done. I wonder, with herbs, if the ability to better fine-tune dosage is helpful in mitigating herxes? What are you using for Bart? I started to add Sida to my Bicillin shots, but halted at 5 drops x 2 per day due to the herx, which could have been both due to Bicillin and Sida. Maybe that's why this one is so bad and long-lasting. Hope you're beginning to feel better. Do you know if you need the methyl B-12 and methylfolate as well with your specific gene mutations? I know that changing over to those versions have helped my body detox much easier. You can use Benadryl to help ease the neuro symptoms sometimes, as it suppresses the CNS, which in turn will ease the neuro symptoms. And yes, I feel that being able to fine tune the doses to our specific needs helps tremendously to not only avoid the serious, long lasting herxes, but to keep us more functional as well.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Oct 26, 2017 12:58:35 GMT
Thanks Trav.
I have only have one heterozygous (C6656C) mutation. My LLMD said it was not necessary to treat it. But, from what I have read on other forums, there seems be different approaches to this. Maybe I should revisit this?
I have activated charcoal and have taken it twice since the herx began one week ago. Is it okay to take it once per day until the herx subsides?
This herx is going on its second week. It's so discouraging. I know you know how this feels, when it lasts this long, you start wondering, "is this going to be my life?"
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Post by Admin/ Traveler on Oct 26, 2017 17:31:03 GMT
Yep, those thoughts can be brutal to deal with too! I'm so very sorry that you are going through this.
I would suggest using the activated charcoal up to 3 times a day, depending on if you already deal with a lot of constipation or not. If not, then I would encourage you to see how you do on 2 or 3 caps 2 or 3 times a day until you get some relief (always watching for constipation though!), then lower your dose slightly when you see some of this letting up for you. If you reduce your dose too soon, you can always add another one in later, or be sure to take the larger dose the next time.
Again, please do watch for issues with constipation. This is the worst part of using binders, but if constipation sets in, those toxins will be reabsorbed back into the blood stream, just so we can go through removing said toxins yet again. Having dealt with major constipation issues myself, I wonder sometimes just how many times I have 'recycled' toxins through my body!!! Not a pleasant thought!! LOL!
I actually cannot find a single thing on the C6656C mutation - do you have any links to articles on this specific mutation? I wouldn't know what to suggest at this point for dealing with this - if it's even necessary>
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Post by Randy on Oct 26, 2017 18:59:52 GMT
Im hetro also but on 2...1 of each A1289 & C677t. But I cant do Methyl. Im looking at Adenocobalamyn instead. But that cr*p is pricey lol And I absolutely hate pills. So im searching for sublingual.
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Post by Admin/ Traveler on Oct 26, 2017 21:25:48 GMT
Im hetro also but on 2...1 of each A1289 & C677t. But I cant do Methyl. Im looking at Adenocobalamyn instead. But that cr*p is pricey lol And I absolutely hate pills. So im searching for sublingual. Randy, have you looked into what's available on Amazon? It would at least give you an idea of who is making some of it.
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Post by Randy on Oct 28, 2017 17:30:45 GMT
Yeah Ive looked. It just a matter of deciding which one to try. I tried methyl shots and at just 7mg it made me feel like total poo plus I hate needles and will not stab myself. So im gunna look at sublingual Adeno.
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Post by Admin/ Traveler on Oct 28, 2017 20:11:05 GMT
Best of luck! I did the shots for a few months - it's definitely no fun! Do be sure to get one that is 'stabilized' as I read that that form doesn't last long.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Oct 31, 2017 19:05:20 GMT
Randy, did your LLMD say it was necessary to treat the C677T mutation, or do you need to look at treating because you have two heterozygous mutations? I am told the C677t alone is not a serious inhibitor of detoxing.
Trav, I'm almost 2 weeks out from my last Bicillin shot and still herxing. The drug facts for IM Bicillin state that "blood levels are maintained at .03 to .05 for 14 days following injection AND blood levels of .003 may still be detectable 4 weeks later." Do you think that explains why this herx is so intense and long lasting? I know you've herxed for months on end. Have you had experiences when you continue to herx for many days even after you've stopped treatment?
I'm at the point now where I'm assuming I'm still herxing, but wondering if this is just my new awful. Tell me this gets better ... someday?
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Post by Randy on Nov 2, 2017 20:53:44 GMT
I dont have a doc who treats near me that I can afford or who I believe will do an individualized treatment plan so Im self treating with herbs. Im not sure on the impact of only have 1 copy of each mutations effect on detoxing.
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Post by alyeska on Nov 3, 2017 4:02:36 GMT
Randy, did your LLMD say it was necessary to treat the C677T mutation, or do you need to look at treating because you have two heterozygous mutations? I am told the C677t alone is not a serious inhibitor of detoxing. Trav, I'm almost 2 weeks out from my last Bicillin shot and still herxing. The drug facts for IM Bicillin state that "blood levels are maintained at .03 to .05 for 14 days following injection AND blood levels of .003 may still be detectable 4 weeks later." Do you think that explains why this herx is so intense and long lasting? I know you've herxed for months on end. Have you had experiences when you continue to herx for many days even after you've stopped treatment? I'm at the point now where I'm assuming I'm still herxing, but wondering if this is just my new awful. Tell me this gets better ... someday? Kb69, I'm feeling the same way you are. Is this just my new awful? I'm going to a good doctor (I think...after reading all of this stuff about how much all of you know and how much I don't, I'm starting to wonder,) and I'm losing ground quickly. My doc told me that I shouldn't do abx because is would only be a short term fix, but I had to get to the Netherlands to see a loved one of mine who is elderly and starting to suffer from dementia and heart disease for a last visit in case something happens. I begged him to let me go on abx and promised him I'd also do ozone therapy. So, for the last year I've been doing shocks with various abx and just went off them a couple of months ago because of candida and gut problems. Right now I'm on 6 drops of samento and hoping to add more herbs because I seriously can't live this way. Then everyone says no stress, and I'm sitting here thinking, in whose world is there no stress? I have three teenagers, one who is a recovering drug addict at 17 and just moved home in August after his third rehab program, and two are just learning to drive. I'm too ill to cook or clean, so my house is trashed. Yesterday my husband came home and told me that he's being "re-allocated." We are still paying for our son's many rehabs. What the heck will we do if he loses his job? Maybe the stress is making things go downhill more quickly. Dang, I just want to feel NORMAL once in awhile. I mean, people who have a drug addict for a son probably never feel normal, but I mean health-wise. I just want to wake up for even one day a week and be able to get something done. I've having a particularly rough week physically, and I'm just not sure what's going on. At this rate, I feel like I'll be dead by Christmas. Thank you for letting me vent. This is really the first place I feel like I can really do that.
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Post by Admin/ Traveler on Nov 3, 2017 20:55:30 GMT
Well, I was stuck feeling horrid due to treatments that should have been making me feel better, so I first switched what I was using and that was very helpful. That was when I first started treatments and went from abx to herbs - herbs just work better for my body. Then, after I was reinfected/relapsed (actually believe it was a combination), I restarted treatments thinking it was going to be a long haul just because now I was dealing with low thyroid as well as critically low adrenal functions. So, I stuck it out and stayed in treatments, but things weren't really getting any better. I had thought I was going to just restart the first set of herbs that worked for me (Chronic tonic and others), but the more I thought about it and the more I learned with my herbal schooling, I suddenly decided that I needed to stop trying to treat the infections themselves and switch over to supporting my body instead - support detoxing, basic functions and immune support. What has been happening lately has been nothing short of surprising! I made a 4 thieves tincture (herbs used lavender, rosemary, sage, thyme, peppermint, garlic and black pepper), medicinal mushrooms (I don't have any mold issues) and herbs and supplements that support as well. I've been going like a madman (comparatively!! LOL!), being out from the house 3 or 4 days of every week. As long as I can be home to rest and not have a million things to do, I can recover and keep going like that - and have for the past 4 weeks now! This may not be the approach that everyone needs to take - that's not at all what I'm saying - remember, I've not only been infected for 46 going on 47 years, but I've been in treatment for much of the last 7 years (ick). There comes a point in time where we may need to release the idea of healing and work on supporting our body. I may go back into treatments again at some point. My main point is that although we may have to shift our focus, yes, things can get better!!!! For those that are just starting treatments, I would not encourage you to switch over to support only, but do be sure that supporting the body and immune system is part of the treatments. If you are struggling, break it all down. Are you able to effectively detox the different organs? Or do you show symptoms/signs that your liver (or whatever) is struggling? If so, start trying different detoxing methods for whatever is lacking. I like to use herbs that have more than one action. Take turmeric for example - anti-inflammatory and a good one, but it also regenerates not only the liver, but brain cells!! Ginger is good for nausea, but it also helps lower inflammation also (so less pain), as well as helping to heal ulcers and nerve damage! keep searching treatments. There are a lot of good protocols out there with different things - from BVT (bee venom therapy - for those NOT allergic to bee stings!), to Rife, herbs, pharmaceuticals and more. If your doc doesn't seem to be helping much, and you can afford to get to one that is close enough, get another opinion! A new set of eyes on the 'problem' has helped a lot of people in a lot of different situations! And just refuse to give up. Hang in there and keep searching for things that will make life a bit easier. The last one is the most important to me on most days - keep your friends close!!! I would have never made it this far without the help of others.
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Post by alyeska on Nov 3, 2017 21:18:09 GMT
Just found out today that the chronic tonic is probably out due to my ammonia levels. Can't do Cowden either. Had to stop abx. So many dang allergies to many of the herbs that seem to work.
Trav, I want to know how you kept your positive attitude all of that time!
Kb69, I sure hope you find some answers. I'm ready to shoot myself with this herx.
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Post by Admin/ Traveler on Nov 3, 2017 22:02:25 GMT
Well, we can have high ammonia levels due to not being able to detox well. So, with good detoxing, that shouldn't pose an issue - and any treatments can add to ammonia levels: Ammonia: A Lyme disease toxin For about 5 years, my ammonia levels were so high that I kept smelling cat urine (or so I thought) all over our house! My poor cat got blamed for peeing in the house, even though it was me! I could smell it daily, and it even caused my nausea to get worse. My positive attitude? LOL! Well, I have my days, but I allow myself to have those bad attitude days - but only one at a time. We all get discouraged, and these infections give us a lot to get discouraged about! But, with the help of some good friends that you can be completely open and honest with, some good venting, and to refuse to allow these infections win, we can make it. The toughest part is not getting so discouraged that we quit. I nearly did twice now - but these infections have taken enough from me, and they don't get to take any more. I've simply made up my mind. I'll 'work' withing the confines of being chronically ill though. Hang in there, vent away and keep trying. There simply HAS to be something out there that can help each of us - but bugger of it is, it will likely be something different for each of us.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 14, 2017 16:05:32 GMT
Alyeska, I hope you're feeling better. My herx resolved. I did 1/2 a bicillin injection without consequence. Then, a week later, did a full bicillin injection and am herxing again. This herx is different -- headache, depression and fatigue. Hard to believe we can have different types of herxes to the same medications. Then again, I suppose there is nothing unbelievable about these infections.
Trav, you always put a positive face forward for all of us. Your persistence as a problem solver keeps us all going, too!
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Post by Admin/ Traveler on Nov 17, 2017 20:44:37 GMT
Alyeska, I hope you're feeling better. My herx resolved. I did 1/2 a bicillin injection without consequence. Then, a week later, did a full bicillin injection and am herxing again. This herx is different -- headache, depression and fatigue. Hard to believe we can have different types of herxes to the same medications. Then again, I suppose there is nothing unbelievable about these infections. Trav, you always put a positive face forward for all of us. Your persistence as a problem solver keeps us all going, too! Well, thank you for your kind words, KB! I have to do those things for my own survival, so now it is just a part of me. Yes, herxing can certainly change, even if we are using the same medicine/herb each time! I do hope you get the herxing under control quickly - even at low levels, herxing is no fun!
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