kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 5, 2018 17:01:04 GMT
Hi,
How do you gauge when to add treatments to your protocol? How do you know if you can handle something new?
I've treating Lyme with Bicillin shots for the last 3 months (along with JK, other supplements and an Buhner-inspired neuro-Lyme herbal tincture of kudzu, motherwort, skullcap and unicaria rhynchophylla/chinese cat's claw). The Bicillin herxes have been really strong, but I've lowered my dose and it's more manageable now.
In the midst of this Rx, Bartonella has exploded -- I feel like I have plantar fasciitis in both feet, heel pain, neuro raging, brain burning, headaches around eyes (all Bart for me).
My LLND wanted me to add Sida Acuta and Isatis for Bart as initial herbs. But, if I am herxing on the Bicillin, should I add anything? The problem is the Bicillin herxes can last for 2 weeks, and then it's time to gear-up for another shot. I feel like I'm never in a good position to add anything new for Bart, nevermind up the drops of my Buhner-tincture.
I meet with my LLND in a couple of weeks, but was curious to know what others have done in these situations. I feel like Bart is my major infection and really needs to be addressed.
Should I just add a drop a day -- go as slow as possible -- regardless of symptoms (herx, flare, full-moon, menstrual cycle)? There just never seems to be a perfect time to add.
Thanks for your thoughts, Kelly
|
|
|
Post by Admin/ Traveler on Jan 5, 2018 17:29:56 GMT
First, KB, I"m so sorry you are in this position!! It's a s*cky one to be in!
From what I understand, you have a choice of two options: 1) treating the symptoms rather than the infection directly. Or 2) biting the bullet and see if you can start adding one drop at a time and keep the herxing down to a minimum.
But, I don't have suggestions on which to go for. That has to be up to you, as you are the one living it. If it was me, it would depend deeply on just what my symptoms were, and which ones I felt I could live with easier (boy, what a position to be in!). Most often, I try treatment first, to see if I can gain some control even if I'm not treating at full doses because by lowering the bacterial numbers, the symptoms should lower as well - but as we know, the herxing to get to that point can, at times, be not only miserable and scary, but dangerous if we aren't careful.
But, if once I start into the low dose (many times with only one or two drops of a new herb), I start to herx too much for me, I'll stop the treatments and go back to only alleviating the symptoms.
What I found that worked really well for me with the Bart foot pain was the Essential Oil (EO) called Thieves oil. In a fit of desperation, because my heel pain went to a constant feeling of a railroad spike buried 3 inches into my heel, I tried 3 drops of Thieves EO on each foot - and was very surprised that later that day, the pain actually went away!! I've tried all kinds of things previously, but this was new! About 3 days later, the railroad spike returned, so I used the Thieves EO again, and again, the pain went away for several days. I kept applying every few days - and never more than 3 drops per foot - and the pain left. It's been about 8 months since I've had that railroad spike in my heel.
As with all things, there's no way to know if the Thieves EO will help you, or anyone else, like it did me, but if you wish to give it a try, it might be helpful.
Side note: Interestingly enough, I liked how the Thieves EO worked for me, I made a tincture of Thieves and have been using it as part of my immune support/antibacterial/antiviral approach and have been doing very well since I've added it!
Okay, back to the issue at hand though! LOL! I would definitely encourage you to start with only one drop though - Sida acuta is a potent systemic antibacterial.
From what I've read though, Istatis may help clear the toxins, so it may be the one to start first.
Whatever you decide to do, please do let us know, and please let us know how you are doing!!
|
|
kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 6, 2018 1:17:32 GMT
Thanks, Trav. I think I've been "managing Bart symptoms" for too long, while solely focusing on treating Lyme since ending Babesia treatment 4 months ago. I know my LLMD wanted to see how much progress we could make with Lyme alone, but I really think I need to -- as you point out -- start low and slow and begin to address the Bart.
I started Sida Acuta today, at just a drop. All good, and am going to continue slowly increasing that for a bit before adding Isatis. I have noticed that when I herx on herbs, my body recovers more quickly than when I herx on ABX. I should pay attention to that. Honestly, my body is clearly telling me I do better with herbals. I suppose you could argue that the ABX just kills more bacteria at a faster rate, but if I can't process it well, what's the point?!
I would also like to add Lion's Mane for all of my nerve issues. But, I will wait and add that slowly after bringing in the Isatis. Did you find any value in Lion's Mane?
Thanks for talking this through with me. It's really helpful! Oh, and I'm definitely going to try the oil for my feet! I can't remember what it was like to have normal feet.
|
|
|
Post by Admin/ Traveler on Jan 6, 2018 16:45:27 GMT
Yeah, my body didn't leave any doubt about which it preferred - abx or herbals! Trying to use abx was the worst mistake I made(other than not doing enough to support myself when I was healed) during my whole time in treatments. Listening to our body will get us farther ahead, and faster. I do need to say though, that I'm not at all against abx use, it's just not what my body likes, so I stick to herbs.
"I suppose you could argue that the ABX just kills more bacteria at a faster rate, but if I can't process it well, what's the point?!" - Exactly. So, we are killing bacteria at a faster rate, but if the body can't keep up with detoxing (the most common issue), then we are either starting and stopping treatments frequently, or risking dangerous complications from overwhelming the bloodstream with toxins (cytokine storm). So, rather than anyone asking what is more effective, we need to be asking what can our bodies handle? And adjust our sights accordingly - whatever that may be.
And, I sure wouldn't be the first Lyme patient to say that my Bart symptoms ramped up during Lyme treatments, or that it wasn't until I started treating Bart and Lyme at the same time that I really started making progress. Not everyone has trouble with healing Bart like this, but plenty of us do!
*On a side note from left field, no one can say that one infection is harder to get rid of, or is worse to have -as it's different for each person. This has to do with the body terrain (what's going on inside of us) and exactly how the infections are impacting the functioning of our body.
If you have Lyme, and that infection is causing serious heart issues, then Bart may be a breeze - while other struggle with all that Bart has to offer to it's hosts. For some, it's not so much any one infection, but the combination of them holding their body as a hostage and not allowing the body to function normally.
We are all very highly unique with these infections, and I see other forums struggling with this concept - I hope you don't mind, KB, that I took the time to sort of address this here.
On to your question about Lion's mane. That's one herb that I definitely have a love/hate relationship with!! LOL!!! I do LOVE the herb for how it can help remyelinate the nerves - but in the process of healing, there are the buzzing, stinging, jittery feelings that I get again in my nerves. The herxes on Lion's mane for me, are increased Neuro issues, so take this herb slow until you find out how you respond to it. I had an "eye-opening" night the first few days I used it, as I was up from a Neuro herx!
Oh, I LOVE talking things over with others. It's really awesome to be able to just help out like this! Any time you feel I might be able to add a bit of information in to help clarify something, please do ask! I really do find this all quite fascinating, truth be told!! There are definite similarities between certain people, but the differences and the way each of us responds is very unique to our own situation.
|
|
kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 7, 2018 22:09:52 GMT
I feel like a broken record here, Trav, but thanks again SO MUCH for your response. I can't tell you how much I value the information and insight you provide. Your support is just invaluable to me. I appreciate your point about these infections being so unique to each person both in terms of how they present themselves (symptoms) and how respond to treatment (ABX vs. herbals, treating infections individually or altogether). It's so complicated, which is all the more reason we have to find our own path, and having the opportunity to bounce ideas of folks makes a huge difference in zeroing in on what that path might be. I appreciate the word of caution on Lion's Mane, too. I've heard so many positive reports about how it can help repair nerves and address neuro issues. But, the last thing I can afford right now is more neuro herxes. My neuro symptoms are the worst and my Bicillin herxes have been neuro/psych heavy. I will hold for a little while on the Lion's Mane while I get up to speed with the Sida and Isatis. Final question, for now. What's the general rule of thumb with herbals? Does it take at least 2 to 3 months to see improvement? I'm starting at such low doses, just to be safe, that I'm imagining it could be several months before I can gauge whether or not they're helping.
|
|
|
Post by Admin/ Traveler on Jan 8, 2018 17:20:18 GMT
I feel like a broken record here, Trav, but thanks again SO MUCH for your response. I can't tell you how much I value the information and insight you provide. Your support is just invaluable to me. I appreciate your point about these infections being so unique to each person both in terms of how they present themselves (symptoms) and how respond to treatment (ABX vs. herbals, treating infections individually or altogether). It's so complicated, which is all the more reason we have to find our own path, and having the opportunity to bounce ideas of folks makes a huge difference in zeroing in on what that path might be. I appreciate the word of caution on Lion's Mane, too. I've heard so many positive reports about how it can help repair nerves and address neuro issues. But, the last thing I can afford right now is more neuro herxes. My neuro symptoms are the worst and my Bicillin herxes have been neuro/psych heavy. I will hold for a little while on the Lion's Mane while I get up to speed with the Sida and Isatis. Final question, for now. What's the general rule of thumb with herbals? Does it take at least 2 to 3 months to see improvement? I'm starting at such low doses, just to be safe, that I'm imagining it could be several months before I can gauge whether or not they're helping. LOL - you're making me blush, KB!!! But, I'm so very glad I could be of help! That really is all I want to do - help people learn how to read their body so they can find their own path - whatever that might be. If I can be of help with any herbals, of course, I'm very happy to do that too! To your question - There is no general rule of thumb on how long it takes to respond to herbals! LOL! It can drive us bonkers, but it all depends on what the action of the herb(s) is, and how 'desperately' your body needs the help. For instance, with red root - it started helping me immediately. And don't forget about the herx reaction - and if that's not a response from the body!! LOL! But I think I understand what you are asking - it's about the healing aspect, but the same answer holds true - it all depends on what your body needs and how badly it needs the help. With the herbs, you don't actually go after the bacteria directly, but rather help "set up" the body to do the work. If the body is supported properly (making sure that it's not overwhelmed with toxins/getting each system functioning as best as it can), then it has all the tools needed to combat infections, even serious ones. But when it gets overwhelmed with toxins, or has too many systems compromised, then it can't function well enough to do it's "job" - which is to seek to maintain homeostasis - a perfect harmony of body functions. Some, like me, that have been infected for many, many years, may find that some of those systems are damaged, and some may be damaged beyond repair, but that doesn't mean we can't heal. The body is truly amazing - it can function even though it doesn't have every system working perfectly - and many of those systems can actually repair themselves - with a little help. And that is where the true beauty of herbs shine through (to me anyway). The herbs can help bring the body into balance, where pharma usually forces changes. Over all, I'd have to say that it usually does take - 3 months to see much in the way of positive improvements, but it depends on what part of the body it is. For example, nerves take a very long time to heal, but they do heal. Have I muddied the waters well enough yet? Or shall I keep on going? LOL!!! Sorry - there is no really simple answer, and the more I learn, the more I realize I don't know that much!!!!!
|
|
kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 8, 2018 22:19:02 GMT
Trav, I think you're extremely knowledgeable about these infections. We have all learned so much from you! But, I get what you're saying ... there are no clearcut answers. Even the likes of Horowitz isn't going to get it right every time. There's just too many factors.
My symptoms right now are all neuro -- tingling, burning, inner vibration, anxiety. I don't know how it's possible, but I've never had fatigue or joint pain. Headaches were my worst symptom until I treated Babesia. But, now with Lyme and Bartonella left (and I really think Bart is my worst infection -- I know, who the heck knows, but it just seems that way) my neuro symptoms are just out of control. I think there's a correlation between Bart making Lyme neuro worse, no?
I actually had days last summer when I felt normal. I can't believe it! Once I started treating Lyme with Bicillin this fall, my neuro symptoms went through the roof. So, either the Lyme has been re-awakened and I'm herxing (I know that) and/or the Bartonella is surging, which I think is the case, too.
I'm starting herbs for Bart. But, I wanted to ask you about improvement time b/c I'm just at my wit's end. I know that some people report, "I was on X for a month and felt better!" I'm happy for them, but that's never been my M.O. It took 2 to 3 months to see improvement from Mepron/Zith. So, I was just assuming that herbs might be a little slower acting b/c, as you've noted, they are working WITH your body vs. going after it.
I know the bottom line is patience. And, if nerves take a long time to heal, I'm guessing these symptoms may take the longest time to improve.
Finally, HOW ARE YOU DOING, by the way? You support us so much, I would love to offer my support in return. I hope you're making progress, too. I'm so amazed at the initiative and tenacity you have to design and advance your own protocols. You have really figured it out on your own in so many ways.
|
|
|
Post by Admin/ Traveler on Jan 8, 2018 22:54:07 GMT
Trav, I think you're extremely knowledgeable about these infections. We have all learned so much from you! But, I get what you're saying ... there are no clearcut answers. Even the likes of Horowitz isn't going to get it right every time. There's just too many factors. My symptoms right now are all neuro -- tingling, burning, inner vibration, anxiety. I don't know how it's possible, but I've never had fatigue or joint pain. Headaches were my worst symptom until I treated Babesia. But, now with Lyme and Bartonella left (and I really think Bart is my worst infection -- I know, who the heck knows, but it just seems that way) my neuro symptoms are just out of control. I think there's a correlation between Bart making Lyme neuro worse, no? I actually had days last summer when I felt normal. I can't believe it! Once I started treating Lyme with Bicillin this fall, my neuro symptoms went through the roof. So, either the Lyme has been re-awakened and I'm herxing (I know that) and/or the Bartonella is surging, which I think is the case, too. I'm starting herbs for Bart. But, I wanted to ask you about improvement time b/c I'm just at my wit's end. I know that some people report, "I was on X for a month and felt better!" I'm happy for them, but that's never been my M.O. It took 2 to 3 months to see improvement from Mepron/Zith. So, I was just assuming that herbs might be a little slower acting b/c, as you've noted, they are working WITH your body vs. going after it. I know the bottom line is patience. And, if nerves take a long time to heal, I'm guessing these symptoms may take the longest time to improve. Finally, HOW ARE YOU DOING, by the way? You support us so much, I would love to offer my support in return. I hope you're making progress, too. I'm so amazed at the initiative and tenacity you have to design and advance your own protocols. You have really figured it out on your own in so many ways. LOL! I'm hanging in there! But thank you so much for your very kind words. I'm humbled and blessed by them. I'm making VERY slow progress, but I'm working on healing my gut, adrenals/thyroid and supporting my immune system so it can do more of the work now. My main symptoms seem to be from things like Mycoplasma, and maybe Bart? I'm still getting those headaches and have nerve issues, so it could just be that I need to be more patient (LOL, sound familiar??) in waiting for my nerves to heal more. I would say that you may see some very small improvements in 2 months with herbs - but you do have to be paying attention to see those benefits at that point - since you are so much like me in this, this is what I've learned to expect. If, by 3 months, I haven't seen any improvements/changes in my symptoms, then I figure it's time to change something, but that goes back to evaluating your symptoms again, and seeing what you may be overlooking or may have missed altogether. Sometimes it's that I'm not supporting a body system, sometimes it's that those herbs aren't really working well for me. Again, for me, the key is to look for those very small improvements to know if I'm headed in the right direction, then I can keep my head down and do 'what I need to do'. There are many herbs (Ohhhh, so many herbs!!) that can be helpful, so it's best to do a ton of research, or find someone that has (like me or an herbalist) that you can talk things over with. I've spent years researching herbs, it's only just now that I've gotten really serious about using herbs and have gone back to school to understand them at a much deeper level. Brainstorming with someone knowledgeable about herbs though, can really help. They don't need to know all that much about these infections, if you know what you need support with, and can tell them what hasn't worked for you at this point. Yes, I'm a firm believer that Neuro Lyme and Bart are best buddies - they just LOVE being together! And that spells trouble for us, as you know - together, they can create quite the weird and crazy neuro symptoms! It may be that you had the Lyme infection under control 'enough' to allow you to not have a lot of symptoms....until you tried treating for Bart, which made his buddy, Lyme disease, mad and so he had to make himself known too! I don't know if there has ever been any scientific studies (but it's highly doubtful) on this, but I and others have experienced it enough for me to understand that it's actually quite common. For symptom relief for your neuro issues, if you just need a break to get some sleep, try taking benadryl - it's a central nervous system depressant, so it will ease those neuro symptoms a bit. What I've found most useful for my Neuro pain has been passion vine tincture, turmeric, ginger, lion's mane, B-12 and Ginkgo biloba (helps increase blood flow in the parietal–occipital areas of the brain) and is good for those that have had PET scan and know they have reduced blood flow to the brain. I had 2 areas of reduced blood flow (one was reduced by 20% and one was reduced by 40%). Each one of those things adds to an overall better functioning of my Neuro system - and of course, continuing to treat and heal my adrenals. If you want to go into details, I may be of some help, and we could do it on here, or in a message on here, or in an email. This is your choice (as always) - I'm just here to offer support when I can!
|
|
kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 10, 2018 0:42:58 GMT
Thanks, Trav. I sent you an e-mail. No rush to respond. Whenever you have a moment. Appreciate it very much! Kelly
|
|
|
Post by Admin/ Traveler on Jan 10, 2018 20:17:12 GMT
Thanks, Trav. I sent you an e-mail. No rush to respond. Whenever you have a moment. Appreciate it very much! Kelly I wanted to let you know I did get the email - and I am working on it! It always amazes me how fast days can get busy! We spent yesterday running around the area looking for a few parts that we need still in order to install a new faucet in the kitchen and preparing for a new fridge that will have ice and water (yes, I still live in the dark ages!). Boy! Working on older homes can sure be more of a challenge that I need! LOL! Anyway.... I sure appreciate your patience!!!!
|
|
|
Post by alyeska on Jan 11, 2018 1:51:49 GMT
Thanks, Trav. I sent you an e-mail. No rush to respond. Whenever you have a moment. Appreciate it very much! Kelly I wanted to let you know I did get the email - and I am working on it! It always amazes me how fast days can get busy! We spent yesterday running around the area looking for a few parts that we need still in order to install a new faucet in the kitchen and preparing for a new fridge that will have ice and water (yes, I still live in the dark ages!). Boy! Working on older homes can sure be more of a challenge that I need! LOL! Anyway.... I sure appreciate your patience!!!! I will never buy an old home again. This one is 118 years old, and I thought I’d be able to have the strength, energy, and money to fix it up 8 years ago. Oops! 🤣
|
|
|
Post by Admin/ Traveler on Jan 11, 2018 18:03:39 GMT
118 years old!! Wow!!! That used to be my dream ages ago!!! Long before I realized what kind of limitations I'd have as an adult. I wanted to get an old dairy farm!!! I used to have goats - well I used to have all kinds of critters! LOL! I raised my kids on a small farm that we created in a make-shift fashion (those limitations that I was speaking about) - but I miss my goats!!!!
Ours is just old - not wonderfully old. LOL. It's main problem is that before I got really sick, and before my hubby was disabled (talk about scary!!!), we traveled together for his work as a Master Electrician. I loved it, but just got too sick to continue, and when I got home, I was in no shape to take care of myself, much less a house. Then, about a year later, hubby 'went down' with blood clots so severe he was called the walking miracle in the hospital. Now, we are 9 years past that point and just starting to get back to a place where we are actually capable of doing things like changing faucets, and working on other things around the house. Kind of embarrassing, but it is what it is. LOL.
|
|
kb69
Junior Member
Posts: 72
|
Post by kb69 on Jan 13, 2018 17:19:43 GMT
I can relate to you both. Our house is old, too. It was built in 1850. I always say, "it has good bones," but the rest of it ... a work in progress for us. So many of the homes built in our part of MA date back to the 1600's, it's actually one of the "newer ones" on the block! I'm glad you and your husband are back at a point where you're able to finally take on house projects (as exciting as they are). That had to be a scary time, Trav.
|
|
|
Post by Admin/ Traveler on Jan 13, 2018 18:04:25 GMT
I can relate to you both. Our house is old, too. It was built in 1850. I always say, "it has good bones," but the rest of it ... a work in progress for us. So many of the homes built in our part of MA date back to the 1600's, it's actually one of the "newer ones" on the block! I'm glad you and your husband are back at a point where you're able to finally take on house projects (as exciting as they are). That had to be a scary time, Trav. Your home sound wonderful, KB!! I just love the old homes!! LOL! But I bet they do take a lot of work! Well, I think most of us have been through some pretty scary times with these infections, no matter what "level" of activity/"function-ability" we may have - or not. But, we have some of the best people around to help us get through these times - others that really understand what it's like, other patients! Besides, what other forum can you go to, besides a Lyme forum, and start out talking about adding treatments to a protocol, to talking about living in old homes!!! LOL! I love it!
|
|
|
Post by alyeska on Jan 16, 2018 18:20:39 GMT
I can relate to you both. Our house is old, too. It was built in 1850. I always say, "it has good bones," but the rest of it ... a work in progress for us. So many of the homes built in our part of MA date back to the 1600's, it's actually one of the "newer ones" on the block! I'm glad you and your husband are back at a point where you're able to finally take on house projects (as exciting as they are). That had to be a scary time, Trav. Your home sound wonderful, KB!! I just love the old homes!! LOL! But I bet they do take a lot of work! Well, I think most of us have been through some pretty scary times with these infections, no matter what "level" of activity/"function-ability" we may have - or not. But, we have some of the best people around to help us get through these times - others that really understand what it's like, other patients! Besides, what other forum can you go to, besides a Lyme forum, and start out talking about adding treatments to a protocol, to talking about living in old homes!!! LOL! I love it! I love this forum too. Thanks so much, Trav! I think it’s helped me so much. I was feeling so panicked and alone. This really is a lifeline for me.
|
|
|
Post by Admin/ Traveler on Jan 16, 2018 19:57:12 GMT
Your home sound wonderful, KB!! I just love the old homes!! LOL! But I bet they do take a lot of work! Well, I think most of us have been through some pretty scary times with these infections, no matter what "level" of activity/"function-ability" we may have - or not. But, we have some of the best people around to help us get through these times - others that really understand what it's like, other patients! Besides, what other forum can you go to, besides a Lyme forum, and start out talking about adding treatments to a protocol, to talking about living in old homes!!! LOL! I love it! I love this forum too. Thanks so much, Trav! I think it’s helped me so much. I was feeling so panicked and alone. This really is a lifeline for me. Thank you, Alyeska! I do sometimes still wonder if starting my own forum was the right thing - there's not enough 'real' news on Lyme for me to post about it daily, and I'm just not in the habit of posting all about me all the time. But, as long as we have active members, I'll be here! LOL! You know - the captain goes down WITH the ship!!! Ha ha ha!!
|
|