Your thoughts - opinions please!

As most of you know I have been going to the J clinic for a year and a half now.
I was put on a maintenance protocol a few months ago.
I wasn’t symptom free at the time - and I still am not.

I don’t know how I should be feeling - on days on and days off.
I take abx for 4 days each cycle (a cycle being 4 weeks long.

A few months ago I felt optimistic - would have several good days on weeks 3 and 4.

But this past week I have not felt very good at all.

I’ve been off the abx for over a week now.
A week ago Friday I herxed with a fever, rapid heart rate, body pain.
Fever lasted until late Saturday and it took me all week to recover - not one good day.
Today my husband coaxed me into going for a swim at our lake. I decided to go even tho I was not in a good mood and my back pain was bad, along with head pressure

We went into the cold lake twice to swim and I felt quite good. The pain in my back subsided and lasted the rest of the day and evening.

It hasn’t come back yet - I feel good.

So what the heck is going on?
I can understand the cold water temporarily relieving the pain - but 8 hours later and I still feel good.

This is obviously inflammation - but why is the inflammation from the abx lasting over a week?
And why wouid the cold water take care of it completely?

Maybe it’s just a coincidence???

What do you think is going on?

I think huge part of treating this disease is the infection of course, but there's times where you may have to use supplements to fight the autoimmunity/inflammation to help restore the balance in your body. Even take a break from antibiotics, even if it's a maintenance protocol, as antibiotics can do damage to mitochondria, liver, kidneys, also possibly your thyroid. A good 1 month break or 2 month break may be worth it, maybe even longer. Or rather just go on herbs instead of antibiotics, because they're just easier on your body and a lot less side effects. And then when you feel a lot better, then try hitting the chronic infection gain with antibiotics. It's hard for me to remember if you've taken a break off antibiotics lately?

Even at 8 years of treating this disease, I go out for a run on the sidewalk and I still deal with swelling in the spine and brain. Sucks...

I feel that our bodies aren't just trying to fight the chronic infection off, but dealing with this onslaught of inflammation and swelling, it can last for years... For me CBD oil was a god send, I know you said it didn't work much for you, but you maybe want to try a different brand again with a different formula, I know some CBD oils even have turmeric in them. I know some swear by turmeric/curcumin and fish oil.

Sometimes it's just a waiting game Girlie, allowing your body to repair itself while at the same time fighting off the persister cells, biofilms, and coinfections with time.

So you've been in treatment about 5 years now... Seems like a very long time I know, but there's many who have been treating for 10 years, 15 years, etc... I hate to bring this up, but I think you have to get your mind on accepting dealing with this disease longterm, while still keeping a positive mindset of one day at a time.

Just grateful to hear you got out swimming in the lake Girlie, my suspicion is that could of brought down the swelling, as well as soaking up vitamin d from the sun and breathing in fresh oxygen. While I think lyme patients curing themselves with something like the Wim Hof method is a long stretch, without a doubt there may be something to the cold water therapy for inflammation, autoimmunity, and even the infection itself.
https://www.youtube.com/watch?v=cgxjb46mbmo

Post Edited (Charlie55) : 7/29/2019 3:13:13 AM (GMT-6)

Girlie,

I don’t know what this means, but I would discuss it with Dr. J. as soon as you can. If you’re herxing with fevers on maintenance, maybe you were not ready to go on maintenance. Or it could mean something else. Surely Dr. J. would know what to make of this.

That's interesting! I started doing cold water therapy a while back. Seems to help nervous system, inflammation, stress, maybe affects immune system positively. May be something to try out consistently to gauge if it can help your symptoms.

Charlie55 said...
I think huge part of treating this disease is the infection of course, but there's times where you may have to use supplements to fight the autoimmunity/inflammation to help restore the balance in your body. Even take a break from antibiotics, even if it's a maintenance protocol, as antibiotics can do damage to mitochondria, liver, kidneys, also possibly your thyroid. A good 1 month break or 2 month break may be worth it, maybe even longer. Or rather just go on herbs instead of antibiotics, because they're just easier on your body and a lot less side effects. And then when you feel a lot better, then try hitting the chronic infection gain with antibiotics. It's hard for me to remember if you've taken a break off antibiotics lately?

I take 3 weeks off each month - only taking abx for 4 days per month....have been doing that for several months now.

potsnpans said...
Win Hof talks about cold water affecting the immune system. I know you've said your WBC is lower while on abx. Could it be that your immune system was handling things pretty well until the 4 days of abx, abx threw things out of wack, cold water helped restore balance?

Edit: I guess that's mostly self-evident. Bigger question (the everlasting question) is whether inflammation is still from pathogens or disordered immune system...

I'm not sure. my WBC goes down to mid to high 3's. (4 being the lowest end of range)

I've been doing these protocols for several months now....so not sure why this pattern now.

sandyfeet said...
Mixed feelings on the fact that you’re herxing - does this mean that the longer spacing between doses allows some lyme to come out of hiding now? I’m thinking about what Burrascano said in an interview shared here a few months ago (history of lyme) how he switched to pulsing abx when symptoms returned. It doesn’t really sound like you’re done (but possibly that some spacing of doses is good?)

I also wonder what else Dr. J uses to help the body recover in the last stages. Being Buhner-minded I think it’s important to look at some herbs to reduce inflammation / cytokines. And maybe nerve repair and something like cats claw to boost immunity as your body takes over where the antibiotics leave off.

I agree with others that cold is really beneficial! I’m trying to make cold (and alternating showers) a habit. I do find it helps.

I’m thinking a lot about what it means to move from active treatment to maintenance - what therapies to switch to. There’s not a lot of talk around that. DNRS definitely sounds beneficial. It doesn’t sound like you’re there yet, neither am I, but I’m also starting to wonder at what point we decide it’s in check and we’re focused on keeping it there. I’m also wondering if it’s a mental switch that we need to make as we approach that point. I’m starting to believe it’s not a cut and dry switch but a ramping up of one mindset of health and maintenance at we work on that last x percent. I’m probably just rambling.

Just to be clear - prior to this maintenance protocol of abx 4 days a month, I was on the persisters protocol - which is still only 8 days per month of abx.

I have thought about the DNRS many many times...wondering if I need to flip a switch in my brain...from being sick to being well... IDK

No, you're not rambling.....I call it 'brainstorming". lol.

sebreg said...
That's interesting! I started doing cold water therapy a while back. Seems to help nervous system, inflammation, stress, maybe affects immune system positively. May be something to try out consistently to gauge if it can help your symptoms.

I'm waiting for my husband to get back from his bike ride and we plan to go to the lake.

I'm still feeling pretty good this morning....so go figure.

RainyCloud said...
When you go in cold water your body releases endorphins. You should read up on the benefits of endorphins. It makes sense what's happening.

The thing is - going to the lake isn't anything new. I've been treating for several years now...and we always go to the lake in the summer...and Ive not had this drastic change before....

maybe now it's more of inflammation - perhaps leftover from treatment?
And previously - it was more active infection symptoms?