HealingWell
Search Close Search
☰

Looking like PROGRESS

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/4/2018 5:21 PM (GMT 0)
I’m feeling a little more confident lately about getting to remission.

Since end of feb I’ve been doing Dr J protocols.

A quick summary of symptoms - prior to seeing J and now:

Head pressure: a lot better lately (except when I’m on week one - persister meds plus following week)

Brain - memory/cognitive - improved some - not completely tho.

Shivers - much improved. Not waking up to them in the mornings even tho it’s fall and weather has gotten cooler.

Morning foot pain is barely there some mornings and non existent other days.

The left side of neck pain that was daily every evening several months ago has only occurred ONCE in the past several weeks.


The main troubling symptom is the nerve pain - left shoulder blade , arm and hand.
It’s still with me.

Time will tell
Posted 11/4/2018 5:24 PM (GMT 0)
The low level anxiety I get on waking every morning (in bed) has been non existent a few mornings. And barely sweating...
Posted 11/4/2018 5:38 PM (GMT 0)
Does he have a certain protocol for all or is it custom per individual? Herbs/ Rx? Both?

Ever looked into nerve glides?

Its specific nerve stretches. For shoulder/upper body you need a 8x6ft floor space. Prob on you tube.
Posted 11/4/2018 5:51 PM (GMT 0)

astroman said...
Does he have a certain protocol for all or is it custom per individual? Herbs/ Rx? Both?

Ever looked into nerve glides?

Its specific nerve stretches. For shoulder/upper body you need a 8x6ft floor space. Prob on you tube.

He has a 'core' protocol - but is somewhat tailored to the individual.

Core protocol meaning - he will stabilize first...then do a Babesia (and lyme) focussed treatment, and go on from there.
The protocols do change - I think it depends on what he suspects...(or knows) what confections the patient has.

Each in-person appt. he does a physical exam...which is something my LLND never did...only on my initial consult.

Yah, when my nerves were at their worse I did do some nerve glides... now there's no difference when I do them...
The exercises I do now followed up with an epsom salt bath work quite well (usually)
The warm-up on the Elliptical helps with getting the blood flowing...and then I do exercises - combination of my own (ie strength training with weights) and what the physio gave me. (ie therabands and other 'stuff' )
Posted 11/4/2018 5:59 PM (GMT 0)
Wanted to add why I changed to Dr. J.

I had plateaued with my LLND. He treated me for lyme and bart for 2 1/2 years...and nothing had changed for many months - maybe a year.
He pretty much ignored Babesia. other than Artemisinin and a tincture from Beyond Balance that was it.

So I self-treated Babesia for several months (8 ??) ...and then a couple months later I made the decision to go to Dr. J.
Posted 11/4/2018 6:14 PM (GMT 0)
Great news!
Posted 11/4/2018 6:14 PM (GMT 0)
I am so happy to hear, Girlie! Yeah!!!!!
Posted 11/4/2018 6:20 PM (GMT 0)

astroman said...
Does he have a certain protocol for all or is it custom per individual? Herbs/ Rx? Both?

Ever looked into nerve glides?

Its specific nerve stretches. For shoulder/upper body you need a 8x6ft floor space. Prob on you tube.

Re: herbs - dr J does prescribe some non Pharma treatments but the focus is Pharma.

His biofilm busters are (lacto and xylitol) , and I’ve also been prescribed Cryptolepis and Artemisinin in the past.

Also detoxing and body support he recommends both Pharma and non Pharma
Posted 11/4/2018 6:22 PM (GMT 0)

k07 said...
Great news!

Thanks !

I have renewed optimism - I needed THIS to happen.
Posted 11/4/2018 6:24 PM (GMT 0)

PeppermintTea said...
I am so happy to hear, Girlie! Yeah!!!!!

How are you doing?

I hope you are progressing in the right direction.
Posted 11/4/2018 7:34 PM (GMT 0)
Awww thats great to read Girlie!! Really happy for you and so reassurisng for others on this site smile how much does dr j charge? ( are we allowed to say on here?)
Posted 11/4/2018 8:35 PM (GMT 0)
I just got back online to the forum recently. Reading through old posts, I think we are at the same spot in protocol, Girlie. You are flying through!

I have hit a bit of a wall. I think because of yeast and now dental issues that were just uncovered. But we are all making headway. My DH is leading the pack; he also was the least affected going in.

So happy for you Keep up the great work!

Peppermint
Posted 11/4/2018 9:29 PM (GMT 0)

Szabo246 said...
Awww thats great to read Girlie!! Really happy for you and so reassurisng for others on this site smile how much does dr j charge? ( are we allowed to say on here?)

I won't post the $$ amount...but he is no more than what I've heard other LLMD's charge.

The good news is after a few months, the appt.s are 3-4 months apart...instead of every month or two.
So you could save $$ that way.

And, for those of us who are far away...he does phone appts. I travelled twice this year...(Feb and August) and my next in-person appt. will be March or April 2019.

You can email me for the $$
Posted 11/4/2018 9:32 PM (GMT 0)

PeppermintTea said...
I just got back online to the forum recently. Reading through old posts, I think we are at the same spot in protocol, Girlie. You are flying through!

I have hit a bit of a wall. I think because of yeast and now dental issues that were just uncovered. But we are all making headway. My DH is leading the pack; he also was the least affected going in.

So happy for you Keep up the great work!

Peppermint

PPT - you're doing the Dapsone/Daraprim protocol?

If that's the case....I can see why you hit a wall. I've had some tough days/weeks on it...almost went to the ER one night.

I am finally feeling better...after being on the persister protocol since August. I think it really got in deep to my brain...and caused some awful die-off. My head was actually sore to touch in a few places....after Round 2.
Round 3 wasn't as bad...but still it my head pretty hard. - I went to 3 days dosing on Round 3 as the 5 days in a row was too much.
Posted 11/4/2018 11:09 PM (GMT 0)
Girlie have you tried Capscaicin for nerve pain? It's been helping me out. It's a topical painkiller derived from Chili peppers, you can pick up a .1% solution at any pharmacy for like $10. You've gotta use it for a week or two before it really starts to kick in but it caused a noticeable decrease in my nerve pain. Symptom control isn't as good as a cure, but hey if it works it works.

If you decide to give it a shot (which I recommend because unlike most other painkillers Capscaicin isn't bad for you with long term use) start with a VERY small amount in a small area. Like, pinhead small. If you put too much on it'll burn really, really badly. Your skin will get desensitized to it after a week or so, but it'll cause some irritation at first. It's totally worth a shot though.

Capscaisin works by desensitizing your pain receptors directly. People have mixed success with it but it's made a difference for me.
Posted 11/4/2018 11:34 PM (GMT 0)
Yup - I tried the capsaicin before I was diagnosed - it didn’t help unfortunately.
My dr gave me some free samples
Posted 11/4/2018 11:43 PM (GMT 0)
How long did you try it for? It didn’t start helping me until after a few weeks of use.
Posted 11/4/2018 11:43 PM (GMT 0)
Girlie, this is great news! So glad to hear it.
Posted 11/4/2018 11:46 PM (GMT 0)

Girlie said...

k07 said...
Great news!

Thanks !

I have renewed optimism - I needed THIS to happen.

You’ve renewed my optimism too!
Posted 11/4/2018 11:53 PM (GMT 0)
Girlie,

Glad to hear that!!! Hope things keep moving forward for you.
Posted 11/5/2018 12:44 AM (GMT 0)

Noah2112 said...
How long did you try it for? It didn’t start helping me until after a few weeks of use.

about a week, maybe two.

I'm wondering if it's because my nerve pain is likely CNS driven,,,rather than PNS?

I also tried a topical cream that was made at the compounding pharmacy...can't remember what was in it...maybe ketamine, and also an antidepressant (that works off-label as a pain med)
Posted 11/5/2018 12:47 AM (GMT 0)

WalkingbyFaith said...
Girlie,

Glad to hear that!!! Hope things keep moving forward for you.

Thanks, WbF. I hope they do, too. Actually how I've been the past few days...feels pretty darn good....moments when I'm forgetting I'm even plagued with this no-good, nasty, vile, parasite.
Posted 11/5/2018 3:10 AM (GMT 0)
Very good to hear Girlie! I hope the progress continues.
Posted 11/5/2018 4:06 AM (GMT 0)

Girlie said...

astroman said...
Does he have a certain protocol for all or is it custom per individual? Herbs/ Rx? Both?

Ever looked into nerve glides?

Its specific nerve stretches. For shoulder/upper body you need a 8x6ft floor space. Prob on you tube.

Re: herbs - dr J does prescribe some non Pharma treatments but the focus is Pharma.

His biofilm busters are (lacto and xylitol) , and I’ve also been prescribed Cryptolepis and Artemisinin in the past.

Also detoxing and body support he recommends both Pharma and non Pharma

Lacto by Enzymedica and xylitol, the artificial sweetener? Interesting, I dont remember seeing those here for biofilms. I wonder if he ever uses D-limonene for detox (liver mostly).
Posted 11/5/2018 7:26 AM (GMT 0)

astroman said...

Girlie said...

astroman said...
Does he have a certain protocol for all or is it custom per individual? Herbs/ Rx? Both?

Ever looked into nerve glides?

Its specific nerve stretches. For shoulder/upper body you need a 8x6ft floor space. Prob on you tube.

Re: herbs - dr J does prescribe some non Pharma treatments but the focus is Pharma.

His biofilm busters are (lacto and xylitol) , and I’ve also been prescribed Cryptolepis and Artemisinin in the past.

Also detoxing and body support he recommends both Pharma and non Pharma

Lacto by Enzymedica and xylitol, the artificial sweetener? Interesting, I dont remember seeing those here for biofilms. I wonder if he ever uses D-limonene for detox (liver mostly).

My lactoferrin is Jarrow brand. And, yes xylitol the sweetener. Yup, they've been mentioned here - anyone going to Dr. J. is on them.
I don't think he suggests D-Limonene for detox. Not that I've seen/heard.
✚ New Topic ✚ Reply
12