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Posted 11/29/2021 5:22 PM (GMT 0)
I’m on one week on, three weeks off (maintenance) but have a few (not debilitating) symptoms.

Upon waking in the morning (as soon as I wake) I get a flash of anxiety and the backs of my hands sweat (and sometimes my knees - strangely)

This morning neither happened.
Wonderful to start the day without that occurring.

It’s time to do my abx (maintenance protocol) BUT I’m thinking of postponing it. Last appt with Dr J - he said it was fine to stretch the time between treating.

On one hand I want to see if this trend continues and NOT take the abx.
On the other hand - I don’t want to relapse by not continuing to treat.

Also considering that maybe some of what I feel is partially due to the abx themselves. ie side effects.

Your thoughts? I’m thinking just go an extra week or two?
Posted 11/29/2021 5:52 PM (GMT 0)
As an outsider looking in, I have worried ever since you started maintenance and started skipping on your own. I can’t help but wonder if you had taken the maintenance doses every time until Dr J said to stop what might be different at this point.

Not trying to discourage or frighten you. It would just be heartbreaking if you lose anything you’ve gained or don’t quite get there because you quit too soon.

My vote is take the maintenance doses regardless until he says stop.

If you are wanting to skip because you are herxing as a result, that’s all the more reason to stick to it. Just my 2 cents.
Posted 11/29/2021 6:11 PM (GMT 0)
Thanks for your thoughts, WBF.

I’m not stopping - just stretching the time between treatment. I won’t be on abx forever. At some point I will be stopping abx treatment - you think it’s too soon?
Even though Dr J is on board with me stretching the time off?


I’ve been on maintenance for two years now. How long is long enough? 3 years - 4 years?
Posted 11/29/2021 6:15 PM (GMT 0)
If it were me, I'd try to slowly increase the time off the medications, so I wouldn't have to be on them forever. I'd be worried about the long-term effects of antibiotics on my system.

But, I also recognize you have to manage symptoms, so you can work, be functional, and try to have a normal life. Are you doing anything diet-/supplement-related to help offset the impact on your gut microbiome?
Posted 11/29/2021 6:18 PM (GMT 0)
Hearing about your progress over the years has been great. s WBF mentions, would not like to see that go backwards.

It seems that by now you know your body and when things are fading back a bit. Maybe play it by feelings and doctor's thoughts, but take no chance of relapse?
Posted 11/29/2021 6:19 PM (GMT 0)

The Dude Abides said...
If it were me, I'd try to slowly increase the time off the medications, so I wouldn't have to be on them forever. I'd be worried about the long-term effects of antibiotics on my system.


That’s my thoughts too.
Taking an extra week off for several months - then two extra weeks off.. etc
Posted 11/29/2021 6:22 PM (GMT 0)

The Dude Abides said...


But, I also recognize you have to manage symptoms, so you can work, be functional, and try to have a normal life. Are you doing anything diet-/supplement-related to help offset the impact on your gut microbiome?

Yes, I take probiotics. I take three different kinds and rotate them.
Posted 11/29/2021 6:27 PM (GMT 0)

running wild said...
Hearing about your progress over the years has been great. s WBF mentions, would not like to see that go backwards.

It seems that by now you know your body and when things are fading back a bit. Maybe play it by feelings and doctor's thoughts, but take no chance of relapse?

Right - very slowly increase time off.
Increase to 4 weeks off for several months… then five weeks… etc
Posted 11/29/2021 6:34 PM (GMT 0)

The Dude Abides said...
But, I also recognize you have to manage symptoms, so you can work, be functional, and try to have a normal life. Are you doing anything diet-/supplement-related to help offset the impact on your gut microbiome?

Girlie said...
Yes, I take probiotics. I take three different kinds and rotate them.

I believe Diet > Supplements, but doing something is [probably] better than doing nothing.
Posted 11/29/2021 6:38 PM (GMT 0)

The Dude Abides said...
If it were me, I'd try to slowly increase the time off the medications, so I wouldn't have to be on them forever. I'd be worried about the long-term effects of antibiotics on my system.

Girlie said...
That’s my thoughts too.
Taking an extra week off for several months - then two extra weeks off.. etc

Right. Plus, you wouldn't necessarily go in blocks of a week at a time. You could go off the antibiotics for seven days for this cycle. Then, the next time, you could be off them for eight days. Then, nine days, etc.
Posted 11/29/2021 6:50 PM (GMT 0)
WbF “ If you are wanting to skip because you are herxing as a result, that’s all the more reason to stick to it. Just my 2 cents.“

I’m wanting to stretch the time between protocols - and see how I fare. At some point I want to be off altogether
Posted 11/29/2021 6:54 PM (GMT 0)
Dude: “ I believe Diet > Supplements, but doing something is [probably] better than doing nothing.“

I take two in capsule form, plus - bio-k which are like small yogurt cups fortified with probiotics and also Kefir
Posted 11/29/2021 11:49 PM (GMT 0)

Girlie said...
Your thoughts?

I personally have mixed feelings about a maintenance protocol.
It seems to work for you, I don't doubt that, but I'm thinking about long term health consequences.

I think the goal is to suppress the bacteria enough for your immune system to take over.
So ultimately, I think that it means that either:

- There are still too many bacteria and/or biofilms constantly being produced for your immune system to take over.
- Your immune system isn't strong enough yet to take over.

So with that in mind, you can either work on strengthening your immune system.
or
Switch medication to something that will reduce the bacterial or biofilm load better.
or
Switch to herbs as long-term maintenance.

I wouldn't stay on antibiotics for too long if you're at 95% better for a while now (I think that's the number you mentioned once). That is not to say that long-term antibiotics don't work, they clearly do in your case and in many other people, I'm just saying that if you're stuck at that number for a while, and seem to keep being dependent on them, then it might be time to change something.

Another thing to consider is that the remaining 5% might be damage that should be addressed with other options. Like treatment options for better cognitive recall, I think that was still a symptom you mentioned that you had.

Take care.
Posted Yesterday 12:04 PM (GMT 0)
you have come a long way Girlie - well done and more power to you to continue onwards and upwards.

i would like to offer my thoughts on this for consideration.

logically:

Dr J wouldn't have you on a abx regimen if he didnt think there was still infection present and causing symptoms

if there is infection present and you dont want it to relapse - at least until you have signs that your immune system has it under control - you still need to treat....

so, how to know if its under control? - i guess its down to symptoms - if you still have them i am inclined to think that its due to ongoing infection rather than residual effects of a past infection.
i think any pain coming and going, other variable nerve related symptoms - like tingling, burning etc sore joints coming and going or new symptoms popping in and out - or old ones rumbling along in the background, i would tend to interpret as signs of active infection.

i would therefore go with the majority here that says - keep treating but by all means start to tweak out the duration between pulses as long as symptoms stay very low - as soon as they seem to be increasing - pulse again. no need to go in whole weeks - could be 2 - or 3 days or whatever feels right based on the above.

i think Rainy makes a very good point - with this approach you are basically trying to taper off abx while hoping the body takes over the task of keeping the organism fully suppressed.

so again logically, the other side of the strategy - separate from the abx - is what can you do to help enhance the bodies immune systems ability to deal with the pathogens and regulate itself( all chronic infections dysregulate the immune system)? in fact you could view this as the rate limiting step that determines how soon you can come off the abx.

this is where there is huge scope for many many supportive approaches.
it may include all the usual things - like diet and exercise and lifestyle - but could also include some more esoteric things that people seem to benefit from.

Of course, the thing that makes these things often less immediately appealing - is they all take more effort than simply popping a pill - and we are all somewhat conditioned to see pills as the answer.
But humans are simply not made with that as the only pathway to influence health.

we are instead complex entities inextricably linked with our environment and our evolutionary history with many, many pathway through which we interact with it - from the food we eat to the sunlight that falls on our skin - to the smells we experience and the social context within which we live, and even the story that we tell ourselves about the place we occupy within it.

therefore, perhaps one suggestion would be to do a kind of audit of the health promoting and immune regulating factors in your life - and put an action plan in place to address any areas you feel are less than ideal.
there are of course areas here that people will debate endlessly on what exactly is the ideal - especially at the detail level - but i think we all have a pretty good idea what the broad brush story is in each case.
eg with food - 99% of people will agree that processed food is not ideal and that a diet based on varied whole natural foods are more ideal.
with exercise - we can all agree that some is necessary - within the parameters of each persons individual envelope.
and so on

i would say we also know what the broad categories to be considered are
-diet - see above
-exercise / movement - do you do any planned regular exercise of any sort - if no what can you do
-sleep - do you regularly get 8hrs - if no what can you do
-stress management - do you take active measures to manage the impact stress has on your body
-identity / purpose - countless studies have show how important this is for full health
-social interaction - again social isolation or lack of social contact has serious negative impacts on all cause mortality of humans - are their opportunities to grow this positive social contact

and perhaps other specific immune balancing activities or therapies - mind body techniques, walking in nature, meditation, hyperthermia or sauna, PEMF, etc etc ( but i would say the basics above are probably more impactful overall - or rather - even a good meditation practice is unlikely to be able to offset some of the basics being far of whack)

just my thoughts - but also what has helped me considerably so far - and i say that as someone typically very hard nosed and prone to think that I just needed to take the right drugs or herbs and hit this thing hard and that would be the answer. it has taken me some time to come round to a more holistic view of the problem.
Posted Yesterday 4:04 PM (GMT 0)

Girlie said...
Thanks for your thoughts, WBF.

I’m not stopping - just stretching the time between treatment. I won’t be on abx forever. At some point I will be stopping abx treatment - you think it’s too soon?
Even though Dr J is on board with me stretching the time off?


I’ve been on maintenance for two years now. How long is long enough? 3 years - 4 years?

Gosh!! You’ve already been at the maintenance phase for 2 years? Maybe I am remembering things wrong. I thought that some time back you had not taken the maintenance treatment for many months in a row. Then you took it again and had a strong herx again. Was that not the case? I was thinking that happened some time in the last year, but I don’t remember how far back that was. I don’t know if you have taken the maintenance each month since then or how it affected you.

I have always heard you and others say treat 2-3 months past no more symptoms. I assumed that meant no symptoms on days on or off of treatment for 2-3 months.
Posted Yesterday 9:03 PM (GMT 0)

RainyCloud said...

Girlie said...
Your thoughts?

I personally have mixed feelings about a maintenance protocol.
It seems to work for you, I don't doubt that, but I'm thinking about long term health consequences.

I think the goal is to suppress the bacteria enough for your immune system to take over.
So ultimately, I think that it means that either:

- There are still too many bacteria and/or biofilms constantly being produced for your immune system to take over.
- Your immune system isn't strong enough yet to take over.

So with that in mind, you can either work on strengthening your immune system.
or
Switch medication to something that will reduce the bacterial or biofilm load better.
or
Switch to herbs as long-term maintenance.

I wouldn't stay on antibiotics for too long if you're at 95% better for a while now (I think that's the number you mentioned once). That is not to say that long-term antibiotics don't work, they clearly do in your case and in many other people, I'm just saying that if you're stuck at that number for a while, and seem to keep being dependent on them, then it might be time to change something.

Another thing to consider is that the remaining 5% might be damage that should be addressed with other options. Like treatment options for better cognitive recall, I think that was still a symptom you mentioned that you had.

Take care.

////////////////////////

It’s possible that the lasting symptoms are damage. Or just more healing is needed.

Interestingly the anxiety upon waking coupled with sweating of backs of my hands has resolved.

What’s leftover is mid back pain - not all day every day - it’s a lot better.
It’s worse after a work day (lots of lifting)
Maybe the back pain is from muscle atrophy - due to not using it/exercising it??

Sometimes I have sore feet upon waking but it goes away.

Memory is getting better!!!!!

I think that’s it for symptoms. I don’t chart them anymore -
Posted Yesterday 9:42 PM (GMT 0)

Garzie said...
you have come a long way Girlie - well done and more power to you to continue onwards and upwards.

i would like to offer my thoughts on this for consideration.

logically:

Dr J wouldn't have you on a abx regimen if he didnt think there was still infection present and causing symptoms

if there is infection present and you dont want it to relapse - at least until you have signs that your immune system has it under control - you still need to treat....

so, how to know if its under control? - i guess its down to symptoms - if you still have them i am inclined to think that its due to ongoing infection rather than residual effects of a past infection.
i think any pain coming and going, other variable nerve related symptoms - like tingling, burning etc sore joints coming and going or new symptoms popping in and out - or old ones rumbling along in the background, i would tend to interpret as signs of active infection.

i would therefore go with the majority here that says - keep treating but by all means start to tweak out the duration between pulses as long as symptoms stay very low - as soon as they seem to be increasing - pulse again. no need to go in whole weeks - could be 2 - or 3 days or whatever feels right based on the above.

i think Rainy makes a very good point - with this approach you are basically trying to taper off abx while hoping the body takes over the task of keeping the organism fully suppressed.

so again logically, the other side of the strategy - separate from the abx - is what can you do to help enhance the bodies immune systems ability to deal with the pathogens and regulate itself( all chronic infections dysregulate the immune system)? in fact you could view this as the rate limiting step that determines how soon you can come off the abx.

this is where there is huge scope for many many supportive approaches.
it may include all the usual things - like diet and exercise and lifestyle - but could also include some more esoteric things that people seem to benefit from.

Of course, the thing that makes these things often less immediately appealing - is they all take more effort than simply popping a pill - and we are all somewhat conditioned to see pills as the answer.
But humans are simply not made with that as the only pathway to influence health.

we are instead complex entities inextricably linked with our environment and our evolutionary history with many, many pathway through which we interact with it - from the food we eat to the sunlight that falls on our skin - to the smells we experience and the social context within which we live, and even the story that we tell ourselves about the place we occupy within it.

therefore, perhaps one suggestion would be to do a kind of audit of the health promoting and immune regulating factors in your life - and put an action plan in place to address any areas you feel are less than ideal.
there are of course areas here that people will debate endlessly on what exactly is the ideal - especially at the detail level - but i think we all have a pretty good idea what the broad brush story is in each case.
eg with food - 99% of people will agree that processed food is not ideal and that a diet based on varied whole natural foods are more ideal.
with exercise - we can all agree that some is necessary - within the parameters of each persons individual envelope.
and so on

i would say we also know what the broad categories to be considered are
-diet - see above
-exercise / movement - do you do any planned regular exercise of any sort - if no what can you do
-sleep - do you regularly get 8hrs - if no what can you do
-stress management - do you take active measures to manage the impact stress has on your body
-identity / purpose - countless studies have show how important this is for full health
-social interaction - again social isolation or lack of social contact has serious negative impacts on all cause mortality of humans - are their opportunities to grow this positive social contact

and perhaps other specific immune balancing activities or therapies - mind body techniques, walking in nature, meditation, hyperthermia or sauna, PEMF, etc etc ( but i would say the basics above are probably more impactful overall - or rather - even a good meditation practice is unlikely to be able to offset some of the basics being far of whack)

just my thoughts - but also what has helped me considerably so far - and i say that as someone typically very hard nosed and prone to think that I just needed to take the right drugs or herbs and hit this thing hard and that would be the answer. it has taken me some time to come round to a more holistic view of the problem.

Thanks Garzie.

I do cook 99% of our meals - we do go out for a meal now and then - like once every couple of months.

An example of dinner would be boneless/skinless chicken thighs with a large salad (lettuce, tomatoes, carrots, avocado with home made oil and vinegar dressing)
I’ve been making soup lately - veggie barley - potatoes, carrots, turnips, tomatoes, barley….

Exercise: I have an Elliptical that I use 2-3 x per week. I also go for long walks with a friend - once every week or two.
When weather gets warmer I plan to start running - which I haven’t done for over 5 years
Planning to play tennis in the spring too.

Sleep:
I get 7 1/2 to 8 1/2 hours sleep most nights. I’ve always slept well - except when Lyme symptoms started - I was waking every few hours with anxiety and sweats.

Stress management: That is one area I have had to work on - especially when I went back to work. I was being targeted by the boss. I was going to work with butterflies in my stomach.Luckily he has been promoted out of my area and the new supervisor is wonderful and has given me a lot of praise and thoughtful feedback .
Home life is good re: stress.

Social - it’s good. I have 4 good friends that I socialize with - although there were spans of time that I couldn’t due to Covid restrictions.


I don’t do sauna or PEMF - I was meditating - like three years ago - so guess I could try it again .
Posted Yesterday 10:12 PM (GMT 0)
sounds like you have put a lot of ground work in to me Girlie and are being rewarded with results
well done !
Posted 12/2/2021 3:32 AM (GMT 0)

Girlie said...

It’s possible that the lasting symptoms are damage. Or just more healing is needed.

Interestingly the anxiety upon waking coupled with sweating of backs of my hands has resolved.

What’s leftover is mid back pain - not all day every day - it’s a lot better.
It’s worse after a work day (lots of lifting)
Maybe the back pain is from muscle atrophy - due to not using it/exercising it??

Sometimes I have sore feet upon waking but it goes away.

Memory is getting better!!!!!

I think that’s it for symptoms. I don’t chart them anymore -

This is so great Girlie.
I was actually wondering about your anxiety that happens upon waking, as I came across an old thread the other day. So glad it's resolved and the others too!

Back pain is tricky to diagnose, it can be so many things. I had it when I was younger before Lyme when I was doing manual labor. At the end of the work day my back would be killing me.

Maybe orthopedic insoles would help smile
Posted 12/2/2021 9:21 AM (GMT 0)

Garzie said...
sounds like you have put a lot of ground work in to me Girlie and are being rewarded with results
well done !

Thanks Garzie.

My husband was commenting today how far I’ve come. He reminded me of the time when I was on the couch in the fetal position crying - the debilitating pain for weeks.

And if you think my memory is bad now… lol… my brain was mush for awhile.

Much improved - but still hoping for some more brain healing.
Posted 12/2/2021 9:31 AM (GMT 0)
Thanks all for your feedback - I really appreciate it.

I’m planning to do the protocol next week.
We are going to visit our son but it will be early in the week - we are going to see the Xmas lights at Buchart Gardens on Monday/Tuesday. Home Wednesday.
I don’t usually feel the effects until Friday so I should be ok
It’s been years since we’ve been to the gardens.
Posted 12/2/2021 1:30 PM (GMT 0)
New here so I dont know your whole story but...

Long story short.

I also see Dr. J. Last February I was 1 week on maybe 6 off. I have been doing the maintenance/stretchy thing for what seems like years. I tried to stretch it as far as possible but 6 off is as far as I could get without annoying everyone with my lack of brain. it is what drives me back on. I get a huge cognitive boost with my on week which declines over time. I have 2 other issues - pain and sleep. They either stay the same or are made worse with abx.

Now I am about to start a new protocol. 1 abx and 2 other antimicrobials for lack of a better word. No biofilm. No cyst, No yeast. 3 on 1 off. I am terrified. But I need to get off of abx. My body is on its last legs. While only 1 abx and 2 antimicrobials I am less then thrilled about the 3 weeks on as abx cause problems elsewhere and I only have 2 days to recover.

I think there are a lot of benefits trying to stretch it. For me it really highlighted my need for abx for my brain function. And showed I need to look for other solutions for pain and sleep. I have always recovered despite stretching it farther than I should have for cognitive relief.

Anyway. He sees and has seen so many patients. He wouldn't be on board with stretching it if he thought you would slip backwards so much that it is harmful or non-recoverable. As someone suggested above. Start with days. It is actually really interesting to see what abx fix and what they don't.
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