kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 14, 2017 16:55:07 GMT
Hi, Just wondering if folks have ever experienced different types of herxes on the same treatment (ABX or herb). I'm on IM Bicillin shots. The first mega-herx I had on Bicillin, after the second shot, was neuro: tingling, vibrating, burning with anxiety. When that herx subsided, I used a half-dose of the shot and did not herx. I just resumed the full-dose, at the direction of my LLMD, and am having a strong herx, though not as severe as the first. However, this herx is nausea, fatigue, depression and headache. The depression -- and crying at the drop of a pin (I'm crying as I write this -- this is so much fun! )-- is nothing I've experienced to this degree before. I've never had herxes to the same treatment, herbal or ABX, be so different. Is this common for others? Is it indicative of anything? Also, if I didn't herx on a half-dose and am herxing on the full-dose, should I continue with the full? My LLMD said each shot (@full dose) should elicit less of a herx reaction as I go, especially as I wait for the herx symptoms to subside before the next injection. I suspect the half-dose is deemed not enough to have an impact on the Lyme. If herxes are manageable, should we try to work through them and stick with the treatment? I know some LLMDs don't want you to herx at all and others think limited herxing is okay. I've been reading so much about different approaches today, my head is spinning! I am probably asking questions with obvious answers here, but am looking for reassurance. Thanks for sharing your experiences/insights.
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Post by Little Bear (LB) on Nov 14, 2017 19:52:40 GMT
Hi, Just wondering if folks have ever experienced different types of herxes on the same treatment (ABX or herb). I'm on IM Bicillin shots. The first mega-herx I had on Bicillin, after the second shot, was neuro: tingling, vibrating, burning with anxiety. When that herx subsided, I used a half-dose of the shot and did not herx. I just resumed the full-dose, at the direction of my LLMD, and am having a strong herx, though not as severe as the first. However, this herx is nausea, fatigue, depression and headache. The depression -- and crying at the drop of a pin (I'm crying as I write this -- this is so much fun! )-- is nothing I've experienced to this degree before. I've never had herxes to the same treatment, herbal or ABX, be so different. Is this common for others? Is it indicative of anything? Also, if I didn't herx on a half-dose and am herxing on the full-dose, should I continue with the full? My LLMD said each shot (@full dose) should elicit less of a herx reaction as I go, especially as I wait for the herx symptoms to subside before the next injection. I suspect the half-dose is deemed not enough to have an impact on the Lyme. If herxes are manageable, should we try to work through them and stick with the treatment? I know some LLMDs don't want you to herx at all and others think limited herxing is okay. I've been reading so much about different approaches today, my head is spinning! I am probably asking questions with obvious answers here, but am looking for reassurance. Thanks for sharing your experiences/insights. Hi kb69!-
I am so sorry to hear about herxing symptoms. I can relate to almost all of them.
I personally have never used IM shots before, but I used oral antibiotics for over 1 year. How often do you give yourself an IM shot? Maybe if you did half dose of the Bicillin for a couple of treatments and then try full dose? In the past when I would add a new antibiotic in my treatment, I would start slowly and work my way up to full dose.
"If herxes are manageable, should we try to work through them and stick with treatment?" That is a very good question. I have also read recently that some LLMDs don't want to have their patients herx at all. I personally believe that if the herx is manageable and short lived, then a person should continue treatment. The problem happens when the herx continues or intensifies. Then we have to look into ways of getting control over this situation.
Sending you many (((HUGS!))) through this difficult time.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 14, 2017 20:26:29 GMT
Thanks so much, Little Bear. I wish there wasn't so much trial and error associated with these protocols -- ABX or herbal.
My LLMD thinks riding out a manageable herx makes sense. I typically do, too, when physical symptoms are heightened. But, when the anxiety and/or depression explodes it's really hard to work through those herxes. It's hard to even tell if it's "manageable" when it's psychological because it's so unsettling.
The problem with the Bicillin shot is that once it's injected, you can't reduce or halt the dosage. It remains in your system for an extended release at full dose for 14 days. That said, I think you're right about cutting the dose for a while. I herxed on the full dose, but when I injected just half the shot, I didn't herx at all. Maybe I should return to a 1/2 dose or even try 3/4.
LB, I hope you are continuing to make progress of your own. I appreciate your support!
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Post by Little Bear (LB) on Nov 15, 2017 1:07:34 GMT
Hi kb69!-
YES! The trial and error with this disease is horrible! I always feel like a human lab rat. It's just so hard because everyone is so different on how they handle treatment, what their dominant infection is at the time, what other co infections that person has, and so much more.
I dealt with anxiety from time to time , but for me the depression was terrible. I had weeks that it felt like I lost my sole. I was very empty inside, I wanted to cry but I couldn't. I would also have many thoughts of suicide that went through my mind all day long.
Oh, wow! the Bicillin shot lasts 14 days in your system!
Yes, Maybe try 1/2 dose then try 3/4 and work your way up to full dose? I'm sorry that I not too much help with the IM shots, since I never had any experience with them. I give you a lot of credit for giving yourself shots. I don't know if I would be able to do that.
Awe, thank you so much! I also appreciate your kindness and support!
We might all be different on what treatments we are doing, but a lot of us can relate to the ups and downs of this disease.
Best Wishes!
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Post by girlie on Nov 15, 2017 2:16:38 GMT
Hi, Just wondering if folks have ever experienced different types of herxes on the same treatment (ABX or herb). I'm on IM Bicillin shots. The first mega-herx I had on Bicillin, after the second shot, was neuro: tingling, vibrating, burning with anxiety. When that herx subsided, I used a half-dose of the shot and did not herx. I just resumed the full-dose, at the direction of my LLMD, and am having a strong herx, though not as severe as the first. However, this herx is nausea, fatigue, depression and headache. The depression -- and crying at the drop of a pin (I'm crying as I write this -- this is so much fun! )-- is nothing I've experienced to this degree before. I've never had herxes to the same treatment, herbal or ABX, be so different. Is this common for others? Is it indicative of anything? Also, if I didn't herx on a half-dose and am herxing on the full-dose, should I continue with the full? My LLMD said each shot (@full dose) should elicit less of a herx reaction as I go, especially as I wait for the herx symptoms to subside before the next injection. I suspect the half-dose is deemed not enough to have an impact on the Lyme. If herxes are manageable, should we try to work through them and stick with the treatment? I know some LLMDs don't want you to herx at all and others think limited herxing is okay. I've been reading so much about different approaches today, my head is spinning! I am probably asking questions with obvious answers here, but am looking for reassurance. Thanks for sharing your experiences/insights. I think as long as it's manageable , and the herx resolves fairly quickly - i.e. not going on for several weeks to months...then it should be fine. I don't know any LLMD's who don't want you to herx at all. I think it's expected it will happen. But, we do want to keep up the detoxing, our goal still is to minimize/eliminate the herxing as much as possible.
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 15, 2017 13:36:02 GMT
Thanks, Girlie. I recently met with a naturopath to test and build up my herbal/supplement regimen for adrenals, gut and overall immune support. She doesn't prescribe my Lyme/Co's treatment, but said that she didn't want her patients to herx due to the stress that places on the body.
Herxing seems inevitable to me, especially if you have found a treatment that has a chance of working. So, I needed a gut check here.
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Post by alyeska on Nov 16, 2017 15:42:48 GMT
Kb69, you are a rock star for giving yourself abx shots! I'm trying to work my courage up to go in and get my blood drawn again. I can't imagine giving myself shots. Another bad thing is that I keep forgetting the phlebotomist' name this week! I've known her for 4 years and see her at the md's office usually 3 times a week. How's that for brain fog? I actually had to look her up on my md's website to remember it! Lol!
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 16, 2017 21:27:40 GMT
Kb69, you are a rock star for giving yourself abx shots! I'm trying to work my courage up to go in and get my blood drawn again. I can't imagine giving myself shots. Another bad thing is that I keep forgetting the phlebotomist' name this week! I've known her for 4 years and see her at the md's office usually 3 times a week. How's that for brain fog? I actually had to look her up on my md's website to remember it! Lol! Alyeska, you give me too much credit. My husband actually injects the bicillin into my gluteus. My, we have come a long way in our marriage. Hopefully some of the joy returns soon! I wonder if listening to music or finding another distraction would be helpful for the blood draw? I had a rough one a few weeks ago when an inexperienced tech couldn't get it right (both arms were bruised the next day). It's not fun, for sure. But, stick the ear buds in next time and see if you can find your happy place for a few minutes -- maybe that will help? I never seem to have the same symptoms with each herx, even though I don't change my treatment around a lot. Each time I raise my dose of something that makes me herx, all I know is to watch for increased symptoms, whatever they may be!
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Post by Admin/ Traveler on Nov 17, 2017 21:36:53 GMT
If someone is having issues with blood draws, there are a few things you can do. First and foremost, insist on an experienced phlebotomist! My veins not only fold over on themselves, but will also roll. I quit allowing the inexperienced to poke me a long time ago. I know that they need the practice, but it doesn't have to be on me!!! I'm the one that has to go home and figure out what to do in order to get past the 'damage' that they have done!! Apply heat to the arm to have blood draw, if they have trouble finding a 'good' vein. Be very sure to be well hydrated!!! You can insist what is known as a "butterfly" needle be used: Butterfly needle being used for blood draw I allow each tech ONE try and only one try. I tell them this before they draw any blood, so that they can go get someone else that is more experienced if needed (and I always plan around it taking longer, since they may have to go find someone and wait until they can come help). I will ask for a pediatric phlebotomist if necessary as well, especially if a IV needs to be started. Maybe others also have some tips they would like to share??? I did B12 shots for a few months, so I have a 'taste' of what others go through with these injections. Not fun, that's for sure, but it can be done. At least I could use my thigh though!!! As for herxing, I'm in agreement with as long as the herxing is manageable, then continue on with getting it under control and don't allow it to progress. Herxing even on low levels can definitely mess with the body, so even if I have to stop treatment, I will to get it under control again - although I do my best to recommit myself to a level of dedication on my detoxing and adjusting dose sizes to get it back under control first.
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Post by Little Bear (LB) on Nov 17, 2017 22:06:20 GMT
Hi kb69!-
I am sorry I never answered your question.
You asked, "Just wondering if folks ever experienced different herxes on the same treatment."
Actually, I don't know if I personally can answer this question. I kept a daily journal for the last 3 years. And my symptoms are all over the place.
Hopefully someone else might be able to share if they had the same experience.
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Post by alyeska on Nov 18, 2017 3:52:55 GMT
Hi kb69!-
I am sorry I never answered your question.
You asked, "Just wondering if folks ever experienced different herxes on the same treatment."
Actually, I don't know if I personally can answer this question. I kept a daily journal for the last 3 years. And my symptoms are all over the place.
Hopefully someone else might be able to share if they had the same experience. Yes, kb69, I agree with Little Bear. My symptoms are all over the place too. This week I wasn't sure what was going on because I'm so exhausted and started having a sore throat. Well, by last night I was in the throes of a cold and fever that I just caught from the rest of my family, so now I don't even think I'm herxing at all. I think I'm just regular sick!
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Post by alyeska on Nov 18, 2017 3:56:50 GMT
If someone is having issues with blood draws, there are a few things you can do. First and foremost, insist on an experienced phlebotomist! My veins not only fold over on themselves, but will also roll. I quit allowing the inexperienced to poke me a long time ago. I know that they need the practice, but it doesn't have to be on me!!! I'm the one that has to go home and figure out what to do in order to get past the 'damage' that they have done!! Apply heat to the arm to have blood draw, if they have trouble finding a 'good' vein. Be very sure to be well hydrated!!! You can insist what is known as a "butterfly" needle be used: Butterfly needle being used for blood draw I allow each tech ONE try and only one try. I tell them this before they draw any blood, so that they can go get someone else that is more experienced if needed (and I always plan around it taking longer, since they may have to go find someone and wait until they can come help). I will ask for a pediatric phlebotomist if necessary as well, especially if a IV needs to be started. Maybe others also have some tips they would like to share??? I did B12 shots for a few months, so I have a 'taste' of what others go through with these injections. Not fun, that's for sure, but it can be done. At least I could use my thigh though!!! As for herxing, I'm in agreement with as long as the herxing is manageable, then continue on with getting it under control and don't allow it to progress. Herxing even on low levels can definitely mess with the body, so even if I have to stop treatment, I will to get it under control again - although I do my best to recommit myself to a level of dedication on my detoxing and adjusting dose sizes to get it back under control first. I have a great phlebotomist. I have her take it with a butterfly from the back off my hand because my arms don't work anymore. The only thing with the butterflies is that the tube is so tiny it sometimes gets clogged, so she moves on to the back of my other hand. It's painful, but it's better than being stuck 4 times in the arms and THEN having to move onto the hands. I always try to be well hydrated, but I've never tried heat before. Thanks for the tip!
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 20, 2017 16:43:30 GMT
I'm having trouble replying to specific quotes, I'm sorry...
Regarding "manageable herxes," I think it's easier for me to assess them when pain and fatigue are involved. The herxes I have been having on IM Bicillin shots have included horrific anxiety, and I've had to take Ativan/lorazepam on a few occasions to get through the worst of it. I've never had anxiety before, so this is without doubt the scariest Lyme symptom I've had (and there have been some beauties, as I know everyone has had).
I have a question for you regarding dosage. With oral antibiotics/herbal tinctures, we can cut the dosage or temporarily halt treatment if a major herx hits. With the IM Bicillin shots, the medication stays in your system for 14 days. So, there's no way of changing the dosage once it's injected, your just have to ride it out, and it's be a rough ride this month. I supposed to take 1 shot per week and eventually move up to 2 per week. Thus far, just doing one has been hard.
My history on this medication has been:
1st Shot -- Full Dose/Mild Herx One Week Later 2nd Shot -- Full Dose/Severe Herx (anxiety and neuro) Two Weeks Later 3rd Shot -- 1/2 Dose/No Herx One Week Later 4th Shot -- Full Dose/Severe Herx (anxiety and neuro) -- In my second week of riding this one out.
Given that, I was thinking I should go back to a 1/2 dose and try to get on a regular schedule of tolerating that much before moving to 3/4 dose and then, ultimately, to the full dose x 1 per week. My LLMD said it was okay to try the lower dose, but hasn't been definitive about exactly how to titrate back up. I know it's trial and error.
I guess I'm just looking for reassurance that this is a better approach than continuing to suffer through the full doses every two weeks. Wouldn't it be best to get my body used to the lower dose? Will that pave the way for my being able to eventually assume the full dose? And, even on the 1/2 dose, couldn't I still be killing Lyme, just at an amount my body can handle? In other words, I wouldn't be losing a tremendous amount of ground if I started lower and worked up, would I?
Thanks for considering. I'm so discouraged as I think these shots could really help, and I'm detoxing like a madwoman, but this is the hardest experience I've had with treatment in a year.
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Post by Admin/ Traveler on Nov 20, 2017 17:53:59 GMT
I'm having trouble replying to specific quotes, I'm sorry... Regarding "manageable herxes," I think it's easier for me to assess them when pain and fatigue are involved. The herxes I have been having on IM Bicillin shots have included horrific anxiety, and I've had to take Ativan/lorazepam on a few occasions to get through the worst of it. I've never had anxiety before, so this is without doubt the scariest Lyme symptom I've had (and there have been some beauties, as I know everyone has had). I have a question for you regarding dosage. With oral antibiotics/herbal tinctures, we can cut the dosage or temporarily halt treatment if a major herx hits. With the IM Bicillin shots, the medication stays in your system for 14 days. So, there's no way of changing the dosage once it's injected, your just have to ride it out, and it's be a rough ride this month. I supposed to take 1 shot per week and eventually move up to 2 per week. Thus far, just doing one has been hard. My history on this medication has been: 1st Shot -- Full Dose/Mild Herx One Week Later 2nd Shot -- Full Dose/Severe Herx (anxiety and neuro) Two Weeks Later 3rd Shot -- 1/2 Dose/No Herx One Week Later 4th Shot -- Full Dose/Severe Herx (anxiety and neuro) -- In my second week of riding this one out. Given that, I was thinking I should go back to a 1/2 dose and try to get on a regular schedule of tolerating that much before moving to 3/4 dose and then, ultimately, to the full dose x 1 per week. My LLMD said it was okay to try the lower dose, but hasn't been definitive about exactly how to titrate back up. I know it's trial and error. I guess I'm just looking for reassurance that this is a better approach than continuing to suffer through the full doses every two weeks. Wouldn't it be best to get my body used to the lower dose? Will that pave the way for my being able to eventually assume the full dose? And, even on the 1/2 dose, couldn't I still be killing Lyme, just at an amount my body can handle? In other words, I wouldn't be losing a tremendous amount of ground if I started lower and worked up, would I? Thanks for considering. I'm so discouraged as I think these shots could really help, and I'm detoxing like a madwoman, but this is the hardest experience I've had with treatment in a year. Please DO decrease or stop doses of meds when you are herxing! It will almost always shorten the herx, and ease the symptoms quicker. And although you are right about the injections and not being able to reduce the dose once it's injected - but you can take binders, as they will still work the same as with any other treatments - it will bind to whatever it comes into contact with in the blood - so if the Bicillin is still in your bloodstream, it WILL bind to it and remove it. It will take some trial and error to figure out how effective it will be at any given time, you do still have something to help some. Otherwise, yes, it's just riding it out in the herx (increase your detoxing still please!!!). As for your thinking on going back to a 1/2 dose for a while, then increasing more slowly is a very good idea - and if you can use smaller increments, I would encourage that too! The larger doses are creating too many toxins for you all at once. This tells us that although it's a strong medication for you, it's doing what it needs to be doing, so kind of sneaking up on the full dose would be helpful in lowering the severity of your herxes. You may be actually saving yourself a lot of grief and frustration by doing it this way - herxing is very hard on the body, and can make it so that the body won't be able to handle any treatments for a while until the toxin loads are lowered - not to mention there is a certain subset of Lyme patients that when they push too hard like that, they really crash hard. The damage to their systems is too much, and they can't tolerate much of anything in the way of treatments. No one knows what how this happens yet, or even why, but I've seen it and have tried to help others through times like these. It's just brutal. And, I'm so sorry about the anxiety! I had severe anxiety for a handful of months, and it was extremely hard to deal with - even though I KNEW that it wasn't "just me". Hang in there!
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kb69
Junior Member
Posts: 72
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Post by kb69 on Nov 20, 2017 18:50:11 GMT
Thanks for your note, Trav! I'm using activated charcoal, but just two capsules per day. Maybe that's not enough. I've never tried any other binders. And, I'm going to reintroduce the Bicillin much more gradually moving forward.
I'm sorry you had to deal with anxiety issues, too. It is the worst, and I, too, have to remind myself it's not me, it's this disease. I appreciate your support.
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Post by Admin/ Traveler on Nov 20, 2017 21:24:07 GMT
I've discovered that I do have some "minor" anxiety even without the help of these diseases - but the extreme anxiety is ALL about these diseases! Hang in there!!! And remember we are here for you!!
An extreme episode of anxiety was set off for me any time I went into a store - the lights, sounds and smells overwhelmed my senses, and I would have trouble finding the door to even get out. One time I was so disoriented, I was standing in front of the door (about 10 ft from it) and panicked, I stopped someone working there, and asked them where the front door was! I could usually just sit outside for a bit and then go back in and finish my shopping, but not that day. I just went home.
What I found I had to do was wear dark sunglasses, a bit floppy hat and use an MP3 player with soft music to override all the stimulation from the stores. I still stay out of laundry aisles, and never dare to walk down a perfume aisle (boy, that spelling just doesn't look right today!!). But I no longer have to go out all dressed up with my floppy hat and sun glasses now inside the stores, sporting my MP3 player! Hang in there, it should get better as you heal.
And, I would suggest that you add 2 more caps of charcoal - take one set in the am and one set in the pm, unless you deal with constipation. Then you will need to take steps to deal with the impending issues that will come, but sometimes it's still more than worth the help from the charcoal.
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