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Time to do the protocol again…

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Posted 8/20/2022 4:18 PM (GMT 0)
Have you and Dr J talked about the continued herxes on the maintenance? Do you suspect it’s the Lyme or Bartonella? Somehow I think Bartonella is harder to get rid of, especially if you may have had it since childhood.
Posted 8/20/2022 9:01 PM (GMT 0)

Girlie said...

Never really figured out - I’m thinking it’s a bart skin thing -
But not sure.

I would suspect bart. I noticed that when I started hitting lyme hard, bartonella would come out. Maybe it hides in the biofilm along with borrelia?
Posted 8/21/2022 1:37 AM (GMT 0)

WalkingbyFaith said...
Have you and Dr J talked about the continued herxes on the maintenance? Do you suspect it’s the Lyme or Bartonella? Somehow I think Bartonella is harder to get rid of, especially if you may have had it since childhood.

I haven’t spoke to Dr J lately.
I am way overdue for an in-person visit and I don’t really want to go there.

The maintenance protocol started as 1 week on and 3 weeks off.
After at least a year of that we had a discussion to wean off the meds slowly.
So I have been increasing the weeks off.
This last one was 7 weeks off.

So next round I’m thinking I will do 6 off and see how I feel.
Posted 8/21/2022 10:21 PM (GMT 0)
Feeling much better today so far
Still have burning back pain and pressure in my head.
Temperature is good.
Was able to eat something today - nausea has subsided.
Posted 8/22/2022 3:47 AM (GMT 0)
Hang in there Girlie....

Reducing the OFF weeks sounds like a good plan. I struggled with my pulse wean down schedule a few years back and could only get to 4 weeks OFF.

Usually, Bart will flare back mush sooner than Lyme, which has a longer reproductive cycle. But who knows for sure.

Never give up...

Post Edited (tickbite666) : 8/21/2022 9:25:41 PM (GMT-7)

Posted 8/22/2022 5:32 PM (GMT 0)

tickbite666 said...
Hang in there Girlie....

Reducing the OFF weeks sounds like a good plan. I struggled with my pulse wean down schedule a few years back and could only get to 4 weeks OFF.

Usually, Bart will flare back mush sooner than Lyme, which has a longer reproductive cycle. But who knows for sure.

Never give up...

Thanks Tickbite

Yah, I guess I’ll shorten the time off - I’m just getting impatient to be done with it all.
Posted 8/22/2022 10:21 PM (GMT 0)
Are you continuing to improve after the herxes? Or do you feel like your backsliding? What percent would you give yourself now?
Posted 8/22/2022 11:08 PM (GMT 0)

bro123 said...
Are you continuing to improve after the herxes? Or do you feel like your backsliding? What percent would you give yourself now?

I’m not backsliding. But I still have the two pesky symptoms - short term memory and some upper back pain.

Today my back pain is much better - almost to pre herx pain.
And head is almost clear.

Going to the lake for a swim - I always feel better after that.

Maybe I will post a photo of our lake where we swim.
Posted 8/23/2022 2:38 AM (GMT 0)
Do you take anything for the short term memory issue Girlie?

I remember a couple years ago you mentioned you were looking into nootropics, did you ever do that? Some of them might help!
Posted 8/23/2022 3:18 AM (GMT 0)
Girlie,

Brain fog and short term memory were some of my last sx to improve. But in my past few relapses it was neuro and shin bone pain, and fatigue that flared.
Posted 8/23/2022 5:41 AM (GMT 0)

RainyCloud said...
Do you take anything for the short term memory issue Girlie?

I remember a couple years ago you mentioned you were looking into nootropics, did you ever do that? Some of them might help!

Early on I tried ginkgo biloba but it did nothing.

More recently I was taking taurine… don’t know if it helped - I prob should have stuck with it longer.

Yes - the nootropics - I’m trying to think of it was a prescription/Pharma or a supplement.
I will ask my husband - if he recalls the name of it.
I think Dr J recommended it.
Posted 8/23/2022 5:50 AM (GMT 0)
Was it the P.E.A ?

I have an almost full bottle of it.
I’m going to start taking it along with taurine and magnesium threonate.

I’ve been very slack with my supplements
Posted 8/24/2022 1:01 PM (GMT 0)
there are a few natural ones that can be worth a try

lions main mushroom gets a lot of press from herbalists - including Buhner - stimulates neuron growth and brain plasticity ( translates into the ability of the brain to adapt to and to learn new things )
Posted 8/24/2022 5:15 PM (GMT 0)
I used to think taking abx was a no-brainer. If they don't kill the Lyme, they'd help hold it at bay so it doesnt spread to other priviledged sites. I was on them off and on for 15 or so years.

I still am, but only when I'm really worried it may be spreading. The reasons is they elicit terrible symptoms and I don't think it is herxing. It's like the worst of my neuro symptoms - headache and balance and cognitive collapse.

Good luck to you Girlie.

Post Edited (duncan) : 8/24/2022 10:41:40 AM (GMT-7)

Posted 8/25/2022 3:09 AM (GMT 0)

Girlie said...
Was it the P.E.A ?

I have an almost full bottle of it.
I’m going to start taking it along with taurine and magnesium threonate.

I’ve been very slack with my supplements

Hi Girlie, P.E.A. (Phenylethylamine) is a trace amino acid. It has several effects on the brain, the one you might be most interested in is the increased concentration and working memory benefits.

The half-life is very short though, like most people notice it starts to wear off after 30 minutes to an hour. So depending on what you use it for that could be good or bad. You can dose it 3 times a day for this reason (500 mg x 3). It also helps with mood and other things.
Posted 8/25/2022 3:30 AM (GMT 0)
My husband said the same thing about PEA - wearing off quickly.

I might give it a try
Posted 8/27/2022 5:37 AM (GMT 0)
Girlie when you say short term memory issues, does that also include lack of focus? Or is it more trouble recalling things? If it's also focus you might want to look into Huperzine A. It needs to be cycled though / no more than 3 x 200 mcg per week (with each dose taken on different days). I use it myself, it's helpful.
Posted 8/27/2022 8:47 AM (GMT 0)

RainyCloud said...
Girlie when you say short term memory issues, does that also include lack of focus? Or is it more trouble recalling things? If it's also focus you might want to look into Huperzine A. It needs to be cycled though / no more than 3 x 200 mcg per week (with each dose taken on different days). I use it myself, it's helpful.

Just short term memory. Not lack of focus.
When I wake up every morning - I try to remember what I have planned for the day. Then I come downstairs and look at the note I wrote the day before… sometimes i remember it all… other times not.
Today when I came downstairs , my husband said I left the cat food on the counter (should have put it in the fridge) after I fed Dusty.
Would that happen now and then to people with good memory? I don’t know. Maybe?


It is better than it was though.
But the protocol doesn’t help at all.
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