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Posted 4/19/2017 4:48 PM (GMT 0)
This is my 4th week on IV Rocephin - 2grams a day. I have also been on Doxy and Rifampin for almost two months now along with Samento and Banderol.

I am DNA Connexions positive Lyme and Bart. Only bands 41 and 58 + on Ingenix.

I started to see some of my symptoms dissipate over the past two weeks. Less tremors, brain has cleared up. Some of the nerve pain in my legs was getting better. The banding in my upper back/ shoulder region had gone away.

I decided to take on the Buhner Protocol head on with : hawthorn, hout, JK, Sida, EGCG. I also added on my own Astragalus and Andrographis. I also take lots of supplements - multi-vitamins, fish oil, magnesium, probiotics etc etc. Finally I detox with lemon water, lemon balm, turmeric. I also take LDN.

The last few days have been horrific. My shin/ calf nerve pain (small fiber neuropathy) has been roaring in the evening. My restless leg issues are back as well.

Is this a herx? Am I doing too much to quickly? I have heard the 1 month mark on IV Rocephin can be terrible. Have others experienced this and found relief by pushing through?
Posted 4/19/2017 4:52 PM (GMT 0)
oddity did you add in all those Buhner herbs at one time?

Really one herb at a time, to check for any reactions, is suggested. Also, slowly going up in the dosage is advised.
Posted 4/19/2017 5:02 PM (GMT 0)
Hey PeteZa,

Since I was finally seeing some relief after dealing with this for almost two years, I decided to go all in. It was only over the last two days that I took the full dosage of the Buhner herbs, but I did start them all at once about a week ago.

I guess I should cut back and see which one might be the culprit, if any of them are the culprit.

I'm starting to think I am past the point of no return with these nerve issues.

This disease is crazy. Some days I feel almost 100% normal, like I could go for a 10 mile jog. Then a day or two later my legs are all twitchy with weird nerve pain, etc. If I could just get one full week of no symptoms then I would feel confident of what is causing my issues.
Posted 4/19/2017 5:07 PM (GMT 0)
Oh gosh you are one lucky person to not be herxing horrifically.

No worries though.... It sounds like you didn't do too bad.

I have done some silly things with the herb protocol. But, I too, was a lucky one.

Lyme is ups and downs. Some ups and downs are on day basis and some hourly and some weeks. We are all so different.

I would have a good day and then the next day for absolutely no reason at all felt like I was dying.

Hang in there and detox and be nice to yourself. No huge advances.... it can really hurt you with an overload.
Posted 4/20/2017 2:48 PM (GMT 0)

PeteZa said...
Oh gosh you are one lucky person to not be herxing horrifically.

No worries though.... It sounds like you didn't do too bad.

I have done some silly things with the herb protocol. But, I too, was a lucky one.

Lyme is ups and downs. Some ups and downs are on day basis and some hourly and some weeks. We are all so different.

I would have a good day and then the next day for absolutely no reason at all felt like I was dying.

Hang in there and detox and be nice to yourself. No huge advances.... it can really hurt you with an overload.

PeteZA,

I cut back on the Buhner Protocol just doing few drops yesterday. Wow, what a difference. I feel much better. Maybe this is a good sign that those herbs really do stir things up with the Lyme and Bart?
Posted 4/20/2017 2:55 PM (GMT 0)
Yep! That's a good sign! I"m glad you chose to follow PeteZa's suggestions and lower your dosages.

Do be sure to titrate up slowly this time though! And, you should really consider using a few more detoxing routines daily to help your body deal with the toxins.
Posted 4/20/2017 3:02 PM (GMT 0)

Traveler said...
Yep! That's a good sign! I"m glad you chose to follow PeteZa's suggestions and lower your dosages.

Do be sure to titrate up slowly this time though! And, you should really consider using a few more detoxing routines daily to help your body deal with the toxins.

Traveler,

I will look into additional detox methods.

Thank you.
Posted 4/20/2017 4:24 PM (GMT 0)
Be sure to ask if you need help or suggestions or just have questions. Many of us here have found we respond to the different detoxing routines in different manners, so you will have a lot of differing experiences.
Posted 4/20/2017 5:11 PM (GMT 0)
Good idea oddity.

I love detoxing. I am so weird. I just found a Beet juice kombucha that I absolutely am hooked on.

It is GT's brand. It is called Heart Beet and is kind of like Gingerade with a nice dose of beets and hint of rosemary. Absolutely delicious and tangy and earthy. Did you know beets help lower your blood pressure, fight inflammation, detox and have anti-cancer properties? Hooray for beets!

Review the detox list and see if there isn't something that you can add in. www.tiredoflyme.com/detox-methods.html
Posted 4/20/2017 5:51 PM (GMT 0)
Hi oddity -

Good advice already provided - glad you pulled back on the herbal protocol. I agree that detoxing is increasingly critical the more antimicrobials you add in. You have to be able to move stuff out of your body at the same rate as you are killing it. Make sure you're covering all the typical detox areas - lymphatic, brain, gut, skin, etc…

You seem to be managing the Rocephin much better than I did - I didn't have a rough 4-wk mark, I had a very rough 4 weeks in their entirety… 6 wks, actually. Then herxing improved.

It is not surprising that your symptoms are cycling a bit - keep good notes on how you're feeling on a daily basis. As you move forward with treatment, this will be a tremendous help in trouble-shooting what works, what doesn't, and maybe you can minimize those cycles.

Are you on Ursodiol to protect the gallbladder? Required w/ Rocephin.

The other thing I wanted to suggest is that once I started Rocephin, my other TBD sx seemed to lighten up a bit—the Lyme seemed to be front-and-center. But as time passed and herxing improved, bart reared its ugly head. So this is another thing to consider as you move forward.

-p
Posted 4/20/2017 10:26 PM (GMT 0)
Yep-CRAZY disease it is!!! Just yesterday i was full of piss & vinegar(an old saying for hyperactive young ones)!!! But here it is today am SO achy that I cannot stand long enough to prepare a small meal!
Posted 4/20/2017 11:37 PM (GMT 0)

PeteZa said...
Good idea oddity.

I love detoxing. I am so weird. I just found a Beet juice kombucha that I absolutely am hooked on.

It is GT's brand. It is called Heart Beet and is kind of like Gingerade with a nice dose of beets and hint of rosemary. Absolutely delicious and tangy and earthy. Did you know beets help lower your blood pressure, fight inflammation, detox and have anti-cancer properties? Hooray for beets!

Review the detox list and see if there isn't something that you can add in. www.tiredoflyme.com/detox-methods.html

Beets are a gift from God! I need to break out my juicer again and start juicing beets. I just drink it straight. Somewhat of an acquired taste, but worth the benefits especially now with your detox recommendation.
Posted 4/20/2017 11:44 PM (GMT 0)

Pirouette said...
Hi oddity -

Good advice already provided - glad you pulled back on the herbal protocol. I agree that detoxing is increasingly critical the more antimicrobials you add in. You have to be able to move stuff out of your body at the same rate as you are killing it. Make sure you're covering all the typical detox areas - lymphatic, brain, gut, skin, etc…

You seem to be managing the Rocephin much better than I did - I didn't have a rough 4-wk mark, I had a very rough 4 weeks in their entirety… 6 wks, actually. Then herxing improved.

It is not surprising that your symptoms are cycling a bit - keep good notes on how you're feeling on a daily basis. As you move forward with treatment, this will be a tremendous help in trouble-shooting what works, what doesn't, and maybe you can minimize those cycles.

Are you on Ursodiol to protect the gallbladder? Required w/ Rocephin.

The other thing I wanted to suggest is that once I started Rocephin, my other TBD sx seemed to lighten up a bit—the Lyme seemed to be front-and-center. But as time passed and herxing improved, bart reared its ugly head. So this is another thing to consider as you move forward.

-p

I've had a few bad days on Rocephin, but it hasn't been too bad. My first week on Rifampin was pretty ugly, but now it doesn't even bother me. I'm going to ask my doctor if I can increase the rif to 900mg a day. My labs are fine so he / she will probably say ok.

Funny you ask about Ursodiol, I just picked up another script for that. My doc won't help me if I don't stay on that while on Rocephin.

Forgive my ignorance, but what is TBD?
Posted 4/20/2017 11:48 PM (GMT 0)

mcspike said...
Yep-CRAZY disease it is!!! Just yesterday i was full of piss & vinegar(an old saying for hyperactive young ones)!!! But here it is today am SO achy that I cannot stand long enough to prepare a small meal!

I agree, it's hard to wraps one head around. I mean, I've had symptoms every day for the last two years, but somedays I feel like an alien has taken over my body. It really sucks at times, well all the time!
Posted 4/20/2017 11:57 PM (GMT 0)
TBD = tick born diseases
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