Relapse? Immune system kicking on? Barb Peck?

[Guest guest]

I should clarify that, while I feel weak & tired today, I don't feel

the knee pain or the electrical & other feelings of nerve pain that I

felt yesterday. Of course, things seem to change hourly.

That's part of the reason I wonder if this is my body adjusting to the

absence of abx or my immune system turning on.

Barb Peck, when you finshed each antibiotc, did you feel symptom-free,

so then you gave your body a break from abx until symptoms returned?

Or, did you take the abx break despite feeling some symptoms?

I resisted the temptation last night to take an oral abx when the nerve

pain & head pressure were coming on strong, & I think I'm glad I did

because those don't feel as bad today, though they're still " below the

surface " . (But I did take oregano oil & a garlic supplement.)

thak you!! tempe

[Guest guest]

http://www.alsa.org/research/article.cfm?

id=569 & CFID=1112215 & CFTOKEN=51749176

It seems to me the beta lactams may downregulate glutamate.

Upregulate it when you remove them, and you may get some unpleasant

symptoms. HOWEVER, the question is, is active infection still causing

this upregulation, which rocephin suppressed while suppressing the

infection? Or is it possible that rocephin and other abx killed off

the infection, but also downregulated glutamate so that your body got

dependent on it, and now withdrawing it you are in a sense having the

equivalent of a steroid rebound?

You might try some valium type drugs PLUS magnesium IM and IV and see

if they help--both will tune down the upregulated glutamate IF that's

the case.

I tend to suspect continuing infection of some kind but that's not

very encouraging to say .

> I should clarify that, while I feel weak & tired today, I don't

feel

> the knee pain or the electrical & other feelings of nerve pain that

I

> felt yesterday. Of course, things seem to change hourly.

>

> That's part of the reason I wonder if this is my body adjusting to

the

> absence of abx or my immune system turning on.

>

> Barb Peck, when you finshed each antibiotc, did you feel symptom-

free,

> so then you gave your body a break from abx until symptoms

returned?

> Or, did you take the abx break despite feeling some symptoms?

>

> I resisted the temptation last night to take an oral abx when the

nerve

> pain & head pressure were coming on strong, & I think I'm glad I

did

> because those don't feel as bad today, though they're still " below

the

> surface " . (But I did take oregano oil & a garlic supplement.)

>

> thak you!! tempe

[Guest guest]

" jill1313 " wrote:

It seems to me the beta lactams may downregulate glutamate.

Upregulate it when you remove them, and you may get some unpleasant

symptoms. HOWEVER, the question is, is active infection still causing

this upregulation, which rocephin suppressed while suppressing the

infection? Or is it possible that rocephin and other abx killed off

the infection, but also downregulated glutamate so that your body got

dependent on it, and now withdrawing it you are in a sense having the

equivalent of a steroid rebound?

>

> You might try some valium type drugs PLUS magnesium IM and IV and

see if they help--both will tune down the upregulated glutamate IF

that's the case.

> I tend to suspect continuing infection of some kind but that's not

very encouraging to say .

Jill & Jim,

Well, the parasthesias (burning nerve pain) came back pretty much all

over my body yesterday & today.

I implemented your suggestion yesterday -- I took a benzo &

magnesium. I had those to take during the rocephin due to Tom

Grier's suggestion to keep the brain swelling down & they helped

then. Yesterday, the nerve pain was still strong right through

them. I'll keep trying for the next few days.

I tend to agree with you, though, rocephin may be no longer down-

regulating glutamate, but when you look to the root cause of why

inflammatory cytokines are present and up-regulating glutamate, an

infection would seem to be the culprit.

Thank you again for your support! Tempe

[Guest guest]

I'm out of town right now - just checking my email-

but will answer:

I - like every one else, intitially (the first 6 months to a year

on abx) seemed to relapse a few days after stopping abx - I couldn't

understand this phenomonen.. Lyme- being a slow replicator should

not be able to miltiple that fast to produce symptoms in just a few

days , or even a week off abx..

So I tried weaning off abx (sometimes would take a week to wean

off) - and that seemed to avert this relapse thing.. so I started

wondering if the body compensated shome how to being on high dose

abx and maybe the symptoms after quitting cold turkey were somehow

connected to abx- whithdrawal - in my case the abx I was using also

had known anti-inflammatory mechanism besides being antibacterial..

so I thought that may have had something to do with it. (anything

taking over 18 days seemed to have this relapse effect after

stopping))

So the answer is yes- I did experience a worsening after I would

quit cold turkey, so I stopped quitting cold turkey.

If I was on a combo (or 3) I would wean off one at a time. I

pulsed my antibiotics- so I had lots of opportunities to try

starting and stopping.

Remember- I used Ibuprofen as an anti inflammatory - and when I

would stop abx I found sometimes I had to increase the ibuprofen (or

wobenzymN) - but I was just as panicked as I think everyone is when

symptoms come back when the stop abx.. it's amazing how dependant

you get on them and how fast ;-)... I used to get scared to go off-

but my fear of collateral damage to my body was stronger than that

fear - so I fiddled with ways to come off them. It was a constant

juggling act and very hard to decide what to do, and when to do it.

Barb

> I should clarify that, while I feel weak & tired today, I don't

feel

> the knee pain or the electrical & other feelings of nerve pain

that I

> felt yesterday. Of course, things seem to change hourly.

>

> That's part of the reason I wonder if this is my body adjusting to

the

> absence of abx or my immune system turning on.

>

> Barb Peck, when you finshed each antibiotc, did you feel symptom-

free,

> so then you gave your body a break from abx until symptoms

returned?

> Or, did you take the abx break despite feeling some symptoms?

>

> I resisted the temptation last night to take an oral abx when the

nerve

> pain & head pressure were coming on strong, & I think I'm glad I

did

> because those don't feel as bad today, though they're still " below

the

> surface " . (But I did take oregano oil & a garlic supplement.)

>

> thak you!! tempe

[Guest guest]

Barb,

It was kind of you to take the time to reply when you were out of

town. Thank you.

I agree with you. I've also thought that the pattern was too much

the same after going off each antibiotic to be the bacteria

replicating. And patients are advised to taper off every other drug

that goes into the brain and changes its chemistry, so it seems

logical that we'd have to do the same with abx that we choose

specifically for their capacity to get into the brain.

Also, my experience in the early 1990s with taking abx only during a

relapse or flare and getting the disease into remission for 9 years

tells me that pulsing can work.

I had intended to taper down with my last week of rocephin, but when

I had to go off abruptly because of gallstones, I switched from 2g

rocephin to 1g ceftin. Then I tapered from 500 mg ceftin to 125 mg

over the next 4 days, then stopped.

I guess what didn't work this time was that I switched abruptly from

rocephin to ceftin, and tried to do the tapering down with ceftin???

Today is 2 weeks since stopping the rocephin & beginning the tapering

down with ceftin. Any memory about how long it would take to get

over the " withdrawal " pains when you did quit w/o tapering

sufficiently?

Thank you again. Tempe

-----------------------

I - like every one else, intitially (the first 6 months to a year

> on abx) seemed to relapse a few days after stopping abx - I

couldn't

> understand this phenomonen.. Lyme- being a slow replicator should

> not be able to miltiple that fast to produce symptoms in just a few

> days , or even a week off abx..

>

> So I tried weaning off abx (sometimes would take a week to wean

> off) - and that seemed to avert this relapse thing.. so I started

> wondering if the body compensated shome how to being on high dose

> abx and maybe the symptoms after quitting cold turkey were somehow

> connected to abx- whithdrawal - in my case the abx I was using also

> had known anti-inflammatory mechanism besides being antibacterial..

> so I thought that may have had something to do with it. (anything

> taking over 18 days seemed to have this relapse effect after

> stopping))

>

> So the answer is yes- I did experience a worsening after I would

> quit cold turkey, so I stopped quitting cold turkey.

> If I was on a combo (or 3) I would wean off one at a time. I

> pulsed my antibiotics- so I had lots of opportunities to try

> starting and stopping.

>

> Remember- I used Ibuprofen as an anti inflammatory - and when I

> would stop abx I found sometimes I had to increase the ibuprofen

(or

> wobenzymN) - but I was just as panicked as I think everyone is when

> symptoms come back when the stop abx.. it's amazing how dependant

> you get on them and how fast ;-)... I used to get scared to go off-

> but my fear of collateral damage to my body was stronger than that

> fear - so I fiddled with ways to come off them. It was a constant

> juggling act and very hard to decide what to do, and when to do

it.