Hi!

I'm hoping someone can relate to this story and can share. Was diagnosed with chronic lyme last year. Began herbal protocal with an LLMD and working with an FMD since last July. In october we added Low Dose Naltrexone. I had three pretty decent months; better energy, stamina, almost no pain. My life started to feel as though it was getting back to the way it used to be. But something changed around mid January. Pretty big backslide. Back to the migrating pain but not as sever, also stiffness, lack of appetite, fatigue again and so napping 45 min to an hour and a half depending . .. . (hard to keep up my basic resonsibilities). I have a father who is 91 that I have to check in on, and an older brother with disabilities I have to do the same. And then there is work, my college age daughter who lives here, and dinner and the house for us. All seems so difficult now. Here are my questions. Is this a long herx reaction? I think there was a virus in the midst of this. Or is what I am doing (herbals, LDN, suppliments not working anymore, or is it the time of year (climate is NE)? I had to change my hormone patch from the combi patch to just the progesterone patch and once every three months progesterone pills - because the price ballooned up to 275$ a month. This just eats through the pocketbook and trying to do what we can. But now I am having some mild depression and wonder if I just have too much estrogen in my system now. <Sigh!>. If anyone can relate I could sure use the input - on what you have done to help, or how you moved through this. Ok - long enough post - and getting off now. Thanks for reading.

I'm so sorry to hear you're hurting again. If you're into more herbal, homeopathic, diet healing. Follow my instagram for herbs, treatments, recipes which will also soon be releasing a youtube channel.

Instagram- Atab004

Mross said...
Hi!

I'm hoping someone can relate to this story and can share. Was diagnosed with chronic lyme last year. Began herbal protocal with an LLMD and working with an FMD since last July. In october we added Low Dose Naltrexone. I had three pretty decent months; better energy, stamina, almost no pain. My life started to feel as though it was getting back to the way it used to be. But something changed around mid January. Pretty big backslide. Back to the migrating pain but not as sever, also stiffness, lack of appetite, fatigue again and so napping 45 min to an hour and a half depending . .. . (hard to keep up my basic resonsibilities). I have a father who is 91 that I have to check in on, and an older brother with disabilities I have to do the same. And then there is work, my college age daughter who lives here, and dinner and the house for us. All seems so difficult now. Here are my questions. Is this a long herx reaction? I think there was a virus in the midst of this. Or is what I am doing (herbals, LDN, suppliments not working anymore, or is it the time of year (climate is NE)? I had to change my hormone patch from the combi patch to just the progesterone patch and once every three months progesterone pills - because the price ballooned up to 275$ a month. This just eats through the pocketbook and trying to do what we can. But now I am having some mild depression and wonder if I just have too much estrogen in my system now. <Sigh!>. If anyone can relate I could sure use the input - on what you have done to help, or how you moved through this. Ok - long enough post - and getting off now. Thanks for reading.

Hi Mross,
Welcome to the community!

I​f ​you haven't ​yet​,​​​​ it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as​​ ​​it is packed ​​full of ​​important information​​, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​​ ​​​​And, here's another good place to find helpful detoxing rout​​​​​​​​​​​​​​​​​​​​​​​​​​ines​​:​​​​​​ ​​www.tiredoflyme.com/detox-methods.html​

If you could tell us what your treatment protocol(s) are like, and what you are doing for detoxing, we should be able to help you narrow down what's going on.

It could be that one of your other infections is now 'coming out' because you have one of the more major infections coming under control, could be a lack of detoxing, or if you raised your doses of something suddenly. But, we will need a bit more information before we can be of much help.
​

Mross, glad you like my signature. I got a kick out of it.

Your protocol is something I have no knowledge of, but I'm sure someone will come by with some input. I don't see anything about detoxing, though. Are you doing anything for that?

Hope you're feeling better soon!

I didn't know that's for detox. My favorite method is epsom salt baths with dry skin brushing -- makes the biggest difference for me. I try to drink lemon water and green tea and take burbur and pinella too. Here's a thread with more ideas:
/www.healingwell.com/community/default.aspx?f=30&m=3602759

Dalias: Thanks for sharing your detox routine. I jUST purchased a dry brush yesterday, and started drinking Lemon water . . . But its 'winterfied' being warmed with Lemon, vanilla stevia, and a little cinnamon. Its actually like 'winter' lemonade. I really liked it. Have begun the Epsom salts again too. I have never heard of Burbur or Pinella - thanks for the link!

Thanking people here for your help. I have some research to do, and have a basic plan. Maybe its just as important to listen to a guided meditation with a focus on the positive too. If nothing else, Lyme teaches about patience and keeping positive!

Yes yes, I know it so well. You feel well for a few days and cockily think you have outbattled it. And it really feels like its all gone and you dont have to be careful with the food. Of course, one falls into the pit again, or at least I do.

The frequent error I keep doing when the sickness is somewhat vanished is over-eating. I went from 85 kilo to 65 and I really want to look less skinny again. So I look for every opportunity to increase the dinner sizes and get them pounds back.
And the system gets plugged and horrorful times comes back again..

MooseSafari: Yes - diet is something I've been a stickler on even when feeling better. Well - until the holidays and then I decided I could have some of that dark chocolate that someone gave to me, and a little honey here and there should be fine. Did that for about three weeks. Never again!

So I think this current issue is due to several things - maybe - perhaps?

You mentioned your system gets plugged - are you referring to 'the pipes' ... constipation? I have issues with this when eating a trigger food, or if too much stress. If so - I am taking a triple magnesium that is very helpful for sleep, relaxing muscles, and relieving constipation. I also use an over the counter product called CALM which is very helpful (magnesium citrate). The CALM is somthing I found on my own a while ago and was helpful on its own, and the triple mag by (Innate) my FMD has had me on for pain. They are amazing together to help with detox in this manner. Also helped some with pain.

Traveler: Yes - I do trust the doctors I am working with. Have had great results until just recently - LLMD said, "for you, I think it will just take time". Genetics show detox is on the lower end. I just don't like that the lag-time between appointments is a good 3 months. I can contact them inbetween, but it doesn't feel efficient. Hence the reason why I have come here. I decided that the Dr's offer what has been researched or established, but here there are people that have been working with other things that are helpful and share what works.

Question - is it possible to know if a person is over or under detoxing? Seems this would dictate what to do to help. I'm sitting here looking at some Epsom salts, and alka-seltzer Gold and a lemon and just not sure if I should take the plunge or not. These were suggestion to diminish Herx.

Anyway -

What are Liver and Gall bladder flushes?

Comment on Activated Charcoal: I hear allot about this, but the LLMD I am seeing suggested to not take it as it binds to some of the herbs we are using which would defeat the purpose of taking them. Just wanted to put that out there as something to consider for others.

What are Cytokines Re-modulators? I know what cytokines are and how bad they are for us, but have never hear of re-Modulators. Very curious.

Apple cider, as well as bone broth, wine, and other such things are out for me. My genetics shows I don't detox from histamine well. Am taking a suppliment to help with this but was told to stay aware from them. It was even suggested to NOT eat left overs. Well - I had to draw the line there. I can't cook 5 hours a every day. I've been ok for the most part with left overs.

Thanks for your input, links etc. Very helpful!

Not uncommon to have set backs through the treating and healing process. It's a lot of 3 steps forward, 2 steps back. But as long as you bounce back and are taking 1 more step forward than backwards then you are moving in the right direction.

This is a huge reason why it takes people one to multiple years to really fully recover (if treating intelligently and consistently).

Set backs happen but it doesn't mean overall you are not progressing.

Mross said...
Traveler: Yes - I do trust the doctors I am working with. Have had great results until just recently - LLMD said, "for you, I think it will just take time". Genetics show detox is on the lower end. I just don't like that the lag-time between appointments is a good 3 months. I can contact them inbetween, but it doesn't feel efficient. Hence the reason why I have come here. I decided that the Dr's offer what has been researched or established, but here there are people that have been working with other things that are helpful and share what works.

Question - is it possible to know if a person is over or under detoxing? Seems this would dictate what to do to help. I'm sitting here looking at some Epsom salts, and alka-seltzer Gold and a lemon and just not sure if I should take the plunge or not. These were suggestion to diminish Herx.

Anyway -

What are Liver and Gall bladder flushes?

Comment on Activated Charcoal: I hear allot about this, but the LLMD I am seeing suggested to not take it as it binds to some of the herbs we are using which would defeat the purpose of taking them. Just wanted to put that out there as something to consider for others.

What are Cytokines Re-modulators? I know what cytokines are and how bad they are for us, but have never hear of re-Modulators. Very curious.

Apple cider, as well as bone broth, wine, and other such things are out for me. My genetics shows I don't detox from histamine well. Am taking a suppliment to help with this but was told to stay aware from them. It was even suggested to NOT eat left overs. Well - I had to draw the line there. I can't cook 5 hours a every day. I've been ok for the most part with left overs.

Thanks for your input, links etc. Very helpful!

It's really wonderful that you trust your doctors - it's immensely helpful!! LOL!

To figure out if you are under or over detoxing is a bit tricky, and will involve possibly some uncomfortable days, but it's important to figure it out (unfortunately!). To do this, I prefer to increase my detoxing first - that way I can easily lower it if I find out that I'm already trying to push my body to detox too much. The "symptoms" are essentially the same though - and increase in your symptoms or new symptoms showing up.

If you wish to lower your detoxing first, then do the same thing - watch for an increase in symptoms, and increase your detoxing if you see that happening. But, with what you have said about your detoxing abilities at this point, I would wager that you likely aren't detoxing enough, although you may need to find some more effective, targeted detoxing instead of "just more" detoxing. I like to look at each organ that helps to detox the body and make sure I'm 'hitting' all of them - skin, liver, kidneys, lymph system, intestines.

The liver/gall bladder flushes I use are all natural, and was given to me by my TCM doctor. You can find the recipe on page 2 in the bottom post in the "New to Lyme" thread - but here it is as well:

Traditional Chinese Medicine liver detox
In the morning, 1/2 hour before any food, mix:
1 cup fresh squeezed citrus juice - can be orange or grapefruit .
A couple of good squeezes of lemon or lime juice.
1 - 2 cloves of fresh squeezed garlic
1 tablespoon of olive oil.
A few drops of fresh squeezed ginger juice
Do 2 cycles of 7 - 10 days each, with a 3 day break in between the 2 cycles - OR until you see plenty of bile (dark green color) in your stools.


For some reason, doctors seem to misunderstand the timing of using binders. If they are used 2 hours away (before and after) any meds, herbs, supplements, food or anything that you want your body to absorb, then it's not only okay, but preferable to use. We can't wait until after treatments end to detox - many of us would not survive that long! Our bodies can only handle a certain level of toxins in our body before damage begins. This is what happened to me when I tried my very first treatment for these infections. I was not directed to detox, and it was not understood by the patients at that time how important it was. I ended up with seizures and bed bound for months until I could get detoxed some. It took me over 2 years to get to a point with my detoxing to be able to even leave the house on my own. So, I say, don't wait. If you need to use binders, which are incredibly helpful, then just be careful to follow the guidelines about using them.

Cytokine remodulators help the body to adjust to where it doesn't produce so many cytokines (a little basic, but I'm not sure how else to explain it? Maybe someone else will come up with a better explanation???) The herbs don't necessarily directly attack the bacteria, but help the body do a better job at healing and protecting itself from the bacteria and it's cytokines and other issues.

And I'm very glad to hear that you know you need to stay away from the histamine producers! That's pretty important!!

There is also a lot of controversy about using Stevia as a biofilm buster. It was shown that it works as one....in a test tube, not in a human body, which can be very different, especially with Lyme disease. So we still don't really know if it actually works, but some do feel a difference using Stevia, and some don't. And it's not that those that don't feel a difference with the stevia don't have biofilms - I am "full" of biofilms, if my reaction to cistus incanus tea is any indication at all - and I never once responded to stevia in any way, even though I've used it for over 20 years now. Just something to keep in mind.