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Posted 9/16/2015 12:42 PM (GMT 0)
Since my LLMD has basically cut me loose (I guess he "fired me" as a patient) on Monday via a faxed reply to my note sent to him last Friday... I am pretty lost trying to figure out where to go from here.

Still in shock, I guess, reading that he called his attempt to treat me "futile". I'm sick at heart-- was being treated by this guy since Jan, travelling to the US to do so-- stopped abx on his advice July 1, stopped Plaquenil Aug 13 on my own as I was just getting worse and worse with no respite and wondering if Plaquenil could be the cause of the neuromuscular weakness which has increased so much. (There is evidence in the literature that this COULD be the cause of my worsened symptoms. it has a LONG half life and takes AGES to clear even HALF the plasma concentration.)

The LLMD disagreed that it could be causing my worsening- despite the timeline of worsening since I started it!-- But, yet, he said it was right to d/c the Plaquenil--- ugh--- in the same FAX where he cut me loose. I know I was thinking for myself re: the plaquenil and having d/c'd it Aug 13th-- and I suspect he didn't like it-- very old school. But, let's face it-- I am an RN and USED to thinking for myself!

Now I am in the midst of trying to figure this all out. Very overwhelmed, TBH,..

As Girlie has said, I need to choose an herbal protocol and go with it, and that I will find support here (you guys are great) but it is just mind-boggling. I'm not sure if anyone else even saw the post. It was under my post about the Plaquenil... I had posted an update since things had kind of "blown up."

I have found the Cowden Protocol that is avail for purchase. Is there somewhere I can find the same sort of thing for Buhner and David Jernigan's protocols?

We're paying everything out of pocket like so many are, I am on disability for "MS", we have 3 kids at home (have 4) and a child with special needs. Husband is uber-supportive- member of the Air Force (RCAF). Obviously, we're not financially "rich", LOL. We're trying to be responsible about costs, but I can see how this darned disease just breaks every financial point known to man/woman. Geez. And I have literally hundreds of $ worth of antibiotics in the cupboard, sitting unused and unusable right now. Grrr...

Any advice re: best herbal approach/protocol to use? Main issues for me are problems with ambulation, leg strength, foot drop, good leg getting weaker by the wk... and worsening spasms in legs. (Indoors have to use walker and can barely get around). We have a borrowed wheelchair which we use for outdoor trips. walking is just too hard.

I am detoxing like mad, footbaths, dry brushing, (can't get in/out of tub safely, or I'd do the baths), lemon water- LOTS... using Neuro Antitox basic (no changes noted, and I am an observer by profession) and Burbur and Pinella by Nutramedix. No changes with that either, been using those since mid/late August.
Obviously NOT taking any MS meds.

I am just not sure what the best things to do are. I realize now I should have perhaps ordered the CNS/ PNS formulas of the Antitox, but heck, I am unsure of that, too. :(

Help please? I am feeling overwhelmed, and if you know me you know that is NOT my style. Thanks... ~ A
Posted 9/16/2015 12:50 PM (GMT 0)
Sorry about the problems, really. Though, sadly, I'm afraid I have next to no input, regarding most of your issues. I don't know. Sorry to get your hopes up by responding. Just wanted to try and show a little love.

Though, one thing I can say -> the best protocol to use would be, when it comes to aspects other than cost or accessibility (Buhner's likely takes the cake in those departments, if you order the herbs in bulk and either make capsules/tea yourself), whichever protocol works best for ya! The other two are probably about the same in price.

I wish I had a clear cut answer, but, as I'm sure you know, a lot of this stuff is just about testing the waters.

Again, apologies. Hope you can figure something out. Stick with it.
Posted 9/16/2015 1:01 PM (GMT 0)

Antonio192X said...
Sorry about the problems, really. Though, sadly, I'm afraid I have next to no input, regarding most of your issues. I don't know. Sorry to get your hopes up by responding. Just wanted to try and show a little love.

Though, one thing I can say -> the best protocol to use would be, when it comes to aspects other than cost or accessibility (Buhner's likely takes the cake in those departments, if you order the herbs in bulk and either make capsules/tea yourself), whichever protocol works best for ya! The other two are probably about the same in price.

I wish I had a clear cut answer, but, as I'm sure you know, a lot of this stuff is just about testing the waters.

Again, apologies. Hope you can figure something out. Stick with it.

I really appreciate that Antonio. :) Thanks. :)
Posted 9/16/2015 1:19 PM (GMT 0)
Nutramedix offers financial assistance to one patient per practitioner for I think 6 months' worth of the full Cowden protocol.

I'm not sure if the assistance is for US residents only but, you could surely email Nutramedix for details and I hope your LLMD would at least support you with that.

Their email address for this is at the bottom of the following link:

www.nutramedix.com/downloads/flyers/NM%20HIGH%20RES%20AD%20revised%2011.5x20.pdf

Best of luck to you moving forward!!!
Posted 9/16/2015 1:58 PM (GMT 0)

cd3764 said...
Nutramedix offers financial assistance to one patient per practitioner for I think 6 months' worth of the full Cowden protocol.

I'm not sure if the assistance is for US residents only but, you could surely email Nutramedix for details and I hope your LLMD would at least support you with that.

Their email address for this is at the bottom of the following link:

www.nutramedix.com/downloads/flyers/NM%20HIGH%20RES%20AD%20revised%2011.5x20.pdf


Best of luck to you moving forward!!!

Thanks Cd... I appreciate that. :)

The LLMD pretty much (literally) said "Best of luck" and cut his ties as far as I can see/read in that FAX. I feel that he wouldn't support me in this.

I feel we can make this work- just talked to Pete and he says we're spending more than what Cowden costs/ month just in supplements in an average store trip to replenish SOME of them every couple of weeks... so I think we could make it work. He was trying to help me make sense of it. (He is a great partner.)

I really didn't mean we were in any more huge financial need than the next person/patient but I HATE that I am using up so many of our family's resources: in time, energy and financial realms. ACK! it's frustrating isn't it?

When we talked we figured that since Jan we have spent over 5000.00 in just TWO trips to the US (horrible CNDN/US exchange right now)- we flew one and drove one trip-- and for all the antibiotics I needed (most of which are unused) . A pretty darned pricey effort to receive treatment which I have been told by LLMD was "futile." OHMY...
Thanks for the suggestion though-- you are always a help. I appreciate it. :)
Posted 9/16/2015 2:23 PM (GMT 0)
There have been quite a few discussions recently about the different protocols available as well as their pros and cons.
In my opinion the Buhner gives you more for less cost than the Cowden. The 3 items in the core protocol can be attained for a reasonable amount of money and within a few days you could probably learn alot about it's potential. I used Herbal Essence the last time and purchased the 3 tinctures. Cat's Claw, Japanese Knotwood, Eleuthero.
With joint issues the Teasel is often suggested as well.

The magnesium malate, serrapeptase are supplements recommended by Cowden that can be bought locally. And, amongst other things GSE and saccharomyces boulardi may be worth investigating especially if Candida is a possibility.

Post Edited (B777) : 9/16/2015 8:30:04 AM (GMT-6)

Posted 9/16/2015 4:43 PM (GMT 0)
CD posted a pretty good breakdown in this thread on the costs of Cowden and Buhner:
www.healingwell.com/community/default.aspx?f=30&m=3496508&g=3497404#m3497404

And I know that when I got reinfected last summer (2014), I spent about $280 for an approx. 8 month treatment of Lyme only with the Chronic Tonic - just to give you a comparison - and please remember, these are all in US dollar amounts.

Cowden kind of is 'all inclusive' but I've not heard from a lot of people that have had good success with it for much more than Lyme (sorry anyone that's using this protocol, just being honest with what I've read/seen) and Buhner's breaks it down to treating each infection with a core protocol and you add in other herbs to help deal with specific severe symptoms.

Maybe it would be best for you to see how hard it would be to get each of the protocols and what they require for you to get them to you before you make your decision on which one to start?
Posted 9/16/2015 9:14 PM (GMT 0)
Hi Alimom,

I am so sorry to hear that you are going through this tough time and I can only pray and hope that things get better for you. Us Canadians are really in a tough spot with the lack of resources in certain provinces.

My LLND said Cowden is long term and very regimented protocol. I'm not sure how busy your daily life is with the kids but keep this in mind. I will side with others and suggest Buhner as a good start. Gives you more flexibility and is less of a financial strain too.

Wishing you the best of luck with whatever you choose.
Posted 9/16/2015 9:30 PM (GMT 0)
I am also a huge fan of Buhner's protocol. It seems much more comprehensive to me, like he is covering all the bases when it comes to treating these infections. I also like how he doesn't personally profit from his own protocols. With Cowden, I know they're making a huge profit on their protocol and that really bothers me. The individual tincture bottles cost about $30 USD, which is absolutely crazy for 1 fluid ounce of liquid.

I am healing very quickly on Buhner's protocol alone after treating with abx for 2 years and getting nowhere. It really works.
Posted 9/16/2015 10:35 PM (GMT 0)
That's great news DazedPete1 - I hope it proves to be the protocol that heals you!!
Posted 9/17/2015 12:11 AM (GMT 0)
With an MS diagnosis, I would also consider implementing Terry Wahl's diet protocol:

https://www.facebook.com/Dr.Terry.Wahls

The children will be healthier for it as well.
Posted 9/17/2015 1:25 AM (GMT 0)

rowingmom said...
With an MS diagnosis, I would also consider implementing Terry Wahl's diet protocol:

https://www.facebook.com/Dr.Terry.Wahls

The children will be healthier for it as well.

Already done x several months. Thx
Posted 9/17/2015 2:09 AM (GMT 0)
I am currently trying something called the Vital Plan, Restore Program for lyme. The supplements that are purchased through this program are very similar to the ones I was trying a few years ago when working with a naturopath. However, instead of having 40 bottles of different herbal supplements on my kitchen countertop, I now have four bottles, each containing the specific amounts of each specific herb. Which, when you have memory issues, makes dosing a whole heck of a lot easier.

The herbs included are from the Buhner protocol, combined with a few other things that this particular doctor (Rawls) found to work for his lyme disease.

Note: I have no financial interest in this website or this product. Just throwing it out there as something for you to take into consideration and decide if it might be a good fit for you.

https://vitalplan.com/shop/restore-program
Posted 9/17/2015 11:37 AM (GMT 0)

B777 said...
There have been quite a few discussions recently about the different protocols available as well as their pros and cons.
In my opinion the Buhner gives you more for less cost than the Cowden. The 3 items in the core protocol can be attained for a reasonable amount of money and within a few days you could probably learn alot about it's potential. I used Herbal Essence the last time and purchased the 3 tinctures. Cat's Claw, Japanese Knotwood, Eleuthero.
With joint issues the Teasel is often suggested as well.

The magnesium malate, serrapeptase are supplements recommended by Cowden that can be bought locally. And, amongst other things GSE and saccharomyces boulardi may be worth investigating especially if Candida is a possibility.

Thanks for weighing in, B777. I'm going to review Buhner's protocol since reading everything folks have said. Also-- am already taking s boulardii. I have the Natural foods store here order it in for me. It is excellent. Thx for mentioning it.
Posted 9/17/2015 11:44 AM (GMT 0)

Traveler said...
CD posted a pretty good breakdown in this thread on the costs of Cowden and Buhner:
www.healingwell.com/community/default.aspx?f=30&m=3496508&g=3497404#m3497404

And I know that when I got reinfected last summer (2014), I spent about $280 for an approx. 8 month treatment of Lyme only with the Chronic Tonic - just to give you a comparison - and please remember, these are all in US dollar amounts.

Cowden kind of is 'all inclusive' but I've not heard from a lot of people that have had good success with it for much more than Lyme (sorry anyone that's using this protocol, just being honest with what I've read/seen) and Buhner's breaks it down to treating each infection with a core protocol and you add in other herbs to help deal with specific severe symptoms.

Maybe it would be best for you to see how hard it would be to get each of the protocols and what they require for you to get them to you before you make your decision on which one to start?


Thx for the link, Trav. I agree- CD did give great info there. Thx CD
I didn't realize Cowden didn't address co infections per se. I apparently (via clinical dx) have bartonella based on my severe physical neuro symptoms related to my weakness and mobility effects. . (Have no brain fog or fatigue issues). Buhner is going to get a thorough read-thru and I will put thought into all this some more today.
Posted 9/17/2015 12:32 PM (GMT 0)

sknight said...
I am currently trying something called the Vital Plan, Restore Program for lyme. The supplements that are purchased through this program are very similar to the ones I was trying a few years ago when working with a naturopath. However, instead of having 40 bottles of different herbal supplements on my kitchen countertop, I now have four bottles, each containing the specific amounts of each specific herb. Which, when you have memory issues, makes dosing a whole heck of a lot easier.

The herbs included are from the Buhner protocol, combined with a few other things that this particular doctor (Rawls) found to work for his lyme disease.

Note: I have no financial interest in this website or this product. Just throwing it out there as something for you to take into consideration and decide if it might be a good fit for you.

https://vitalplan.com/shop/restore-program


TY so much for weighing in-- will have a peek at this too. Appreciate your help. Everyone here is wonderful about sharing info and experiences.
Posted 9/17/2015 12:37 PM (GMT 0)

DazedPete1 said...
I am also a huge fan of Buhner's protocol. It seems much more comprehensive to me, like he is covering all the bases when it comes to treating these infections. I also like how he doesn't personally profit from his own protocols. With Cowden, I know they're making a huge profit on their protocol and that really bothers me. The individual tincture bottles cost about $30 USD, which is absolutely crazy for 1 fluid ounce of liquid.

I am healing very quickly on Buhner's protocol alone after treating with abx for 2 years and getting nowhere. It really works.

This gives me more hope, DazedPete1. So glad you're doing better. I am going to really consider this protocol today- I may have more questions for you all, though! LOL I am full of questions!
Yes, I agree, the prices for Cowden's protocol are very high, esp with exchange (I'm Cndn) and the darned shipping we all have to pay! LOL. I am trying not to look at the cost so much-- but it's hard not to, isn't it?
Posted 9/17/2015 12:50 PM (GMT 0)

sunfun123 said...
Hi Alimom,

I am so sorry to hear that you are going through this tough time and I can only pray and hope that things get better for you. Us Canadians are really in a tough spot with the lack of resources in certain provinces.

My LLND said Cowden is long term and very regimented protocol. I'm not sure how busy your daily life is with the kids but keep this in mind. I will side with others and suggest Buhner as a good start. Gives you more flexibility and is less of a financial strain too.

Wishing you the best of luck with whatever you choose.

Thanks so much sunfun123... I appreciate the good thoughts. Yes, it's really tough here. I'm in Nova Scotia, BTW. Nice to meet another Cndn here too!vI see there are a few of us! :)

Based on what ppl are saying, I am definitely going to check into Buhner. It says there is a 2 week delay in shipping the orders after one places the order.. I wonder what the reason is? I am sure there is a good one, though.

Thanks again...
Posted 9/17/2015 2:50 PM (GMT 0)
One point of discussion about the Buhner core protocol....The dosages that he suggests ( for the tinctures ) can be as high as 3 teaspoons a day for Cat's Claw and Japanese Knotwood.
That would require about 16 fluid ounces per month of each.
The largest bottles I have seen are 4oz. and cost between $35-$45 .... Each

Which puts the cost of these 2 items over $300 a month...!!

I tried calculating the cost of the Green Dragon pills and didn't see a savings there either......so, maybe the Buhner protocol isn't quite the bargain that it appears to be.

Maybe someone who has practiced the Buhner can shed light on the most cost effective way to purchase.

Post Edited (B777) : 9/18/2015 6:09:45 AM (GMT-6)

Posted 9/17/2015 3:00 PM (GMT 0)

B777 said...
One point of discussion about the Buhner core protocol....The dosages that he suggests ( for the tinctures ) can be as high as 3 teaspoons a day for Cat's Claw and Japanese Knotwood.
That would require about 16 fluid ounces per month of each.
The largest bottles I have seen are 4oz. and cost between $35-$45 .... Each

Which puts the cost of these 2 items over $300 a month...!!

I tried calculating the cost of the Green Dragon pills and didn't see a savings there either......so, maybe the Buhner protocol isn't quite the bargain that it appears be.


Super helpful info-- Thanks for this. Really helps me/reminds me to read extra carefully.
Posted 9/17/2015 5:36 PM (GMT 0)
Cost has always been a factor for me throughout the course of my treatment, so I was determined to find the cheapest way possible to maintain the Buhner protocol. What I do is buy powdered herbs in bulk from mountain rose herbs. I then just spoon some of the powder into a shot glass and wash it down with water quickly. Not very pleasant to taste but it is effective and the cheapest way that I've found.

As for the cryptolepis, sida acuta, and houttuynia tinctures, I make my own using the recipes in buhner's books. He gives you the recipes for each and it is actually quite easy. I was nervous that my version wouldn't be as effective as the tinctures that I purchased from woodland essence, but I've found my tinctures to be just as effective if not moreso. I have large mason jars filled with these tinctures and I look at them and realize that just in one of those 24 oz jars, I have saved hundreds of dollars.

I agree that if you go about purchasing tincture bottles from woodland essence for $40 per, the Buhner protocol isn't as cheap as it may seem. But if you take my route, and money is indeed an issue, there is no better way to heal from these infections than to buy your herbs in bulk and make your own tinctures.
Posted 9/17/2015 7:17 PM (GMT 0)

DazedPete1 said...
Cost has always been a factor for me throughout the course of my treatment, so I was determined to find the cheapest way possible to maintain the Buhner protocol. What I do is buy powdered herbs in bulk from mountain rose herbs. I then just spoon some of the powder into a shot glass and wash it down with water quickly. Not very pleasant to taste but it is effective and the cheapest way that I've found.

As for the cryptolepis, sida acuta, and houttuynia tinctures, I make my own using the recipes in buhner's books. He gives you the recipes for each and it is actually quite easy. I was nervous that my version wouldn't be as effective as the tinctures that I purchased from woodland essence, but I've found my tinctures to be just as effective if not moreso. I have large mason jars filled with these tinctures and I look at them and realize that just in one of those 24 oz jars, I have saved hundreds of dollars.

I agree that if you go about purchasing tincture bottles from woodland essence for $40 per, the Buhner protocol isn't as cheap as it may seem. But if you take my route, and money is indeed an issue, there is no better way to heal from these infections than to buy your herbs in bulk and make your own tinctures.

Thanks for weighing in-- All of this helps me. Truly appreciated. ~ A
Posted 9/17/2015 7:29 PM (GMT 0)

Alimom4 said...

DazedPete1 said...
Cost has always been a factor for me throughout the course of my treatment, so I was determined to find the cheapest way possible to maintain the Buhner protocol. What I do is buy powdered herbs in bulk from mountain rose herbs. I then just spoon some of the powder into a shot glass and wash it down with water quickly. Not very pleasant to taste but it is effective and the cheapest way that I've found.

As for the cryptolepis, sida acuta, and houttuynia tinctures, I make my own using the recipes in buhner's books. He gives you the recipes for each and it is actually quite easy. I was nervous that my version wouldn't be as effective as the tinctures that I purchased from woodland essence, but I've found my tinctures to be just as effective if not moreso. I have large mason jars filled with these tinctures and I look at them and realize that just in one of those 24 oz jars, I have saved hundreds of dollars.

I agree that if you go about purchasing tincture bottles from woodland essence for $40 per, the Buhner protocol isn't as cheap as it may seem. But if you take my route, and money is indeed an issue, there is no better way to heal from these infections than to buy your herbs in bulk and make your own tinctures.

Thanks for weighing in-- All of this helps me. Truly appreciated. ~ A

Oh this will really help me too. thanks ~~ Annette
Posted 9/17/2015 7:56 PM (GMT 0)
Thank you DazedPete1.....!!

I am very interested in learning more.....

In fact it would be worthy of it's own thread to help many others as well.
I have to admit swallowing the tinctures is not the most pleasant experience especially with all the alcohol involved. I would be curious to see how the powder tastes.

Where do you attain the raw ingredients for the homemade tinctures. Do you cook it on the stove ? I used to brew my own beer... It can't be any more hassle than that... !
Posted 9/17/2015 8:13 PM (GMT 0)
I actually got the idea from another member here, but I don't remember who it was. Buhner explains it all really well in his books about how to do it. No cooking involved, just mix ingredients and wait 6 weeks.

I use grain alcohol from the liquor store. It needs to be grain alcohol because it has a high alcohol content (95%) so that you can water it down to the percentage the recipe calls for. All of the tinctures I make are 60% alcohol, so it is about a 1:2 water to grain alcohol ratio. I order my herbs from monteagleherbs.com. This is the only place I have been able to find bulk cryptolepis root.

I take a 24 oz mason jar and follow buhner's directions on the recipe. I let the tincture sit for 6 weeks, shaking it up every day. When the 6 weeks are up, I strain the mixture through a cheesecloth to remove the plant material and am left with the tincture itself. It has easily cut the cost of purchasing tinctures by about 90%. Now that I realize how cheap it is to make these myself, it makes me kind of upset that these companies charge this much for their tinctures. It also makes me wish I had done it sooner because I ordered those little tincture bottles for about 6 months before I realized how easy it was to make them myself.

There are also other websites that explain tincture making better than I can, just google it.
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