HealingWell
Search Close Search
☰

Another question for people who have seen Dr J

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
1 2 3 4 5
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/30/2018 3:55 PM (GMT -5)
Im exactly like you and i really respect this attitude. If I'm in pain, i want to feel the pain. If I'm depressed, i want to feel the depression. Otherwise how else will you know if something is/isn't working, if you blunt the symptoms? I told Dr J's clinic the same thing with psych med.s, as awful as my symptoms are i want to feel them, otherwise I'll never know if something is working. Then you get into the spiral of taking one med for a particular symptom but needing another med to cover up a side effect of that one, etc... I worry it's a rabbit hole as it seems you do, too.

Im also supposed to be taking gabapentin but haven't started it yet. Do you think you'll take it?
Posted 11/30/2018 4:12 PM (GMT -5)
Aerose - you said:
"Im exactly like you and i really respect this attitude. If I'm in pain, i want to feel the pain. If I'm depressed, i want to feel the depression. Otherwise how else will you know if something is/isn't working, if you blunt the symptoms? I told Dr J's clinic the same thing with psych med.s, as awful as my symptoms are i want to feel them, otherwise I'll never know if something is working. Then you get into the spiral of taking one med for a particular symptom but needing another med to cover up a side effect of that one, etc... I worry it's a rabbit hole as it seems you do, too. "

Im also supposed to be taking gabapentin but haven't started it yet. Do you think you'll take it?"

The pain is affecting your immune system and healing...that's why Dr. J wants his patients to take care of:
pain, sleep, mood, ...etc.

You will know if it's working because the pain meds don't usually take it all away...just dampen it...and then there's the inter-dose times where you do feel it creeping back in.

I get it...I don't want to be on them either....not because I want to feel the pain...but because I read about the side effects...etc. I'm already dealing with side effects of the abx...and I don't want to add more risks of side effects if I don't have to.
So, yah...I do get it... but I wanted to fill you in on why Dr. J thinks it's important for healing.
Posted 11/30/2018 5:54 PM (GMT -5)

Girlie said...
Aerose - you said:
"Im exactly like you and i really respect this attitude. If I'm in pain, i want to feel the pain. If I'm depressed, i want to feel the depression. Otherwise how else will you know if something is/isn't working, if you blunt the symptoms? I told Dr J's clinic the same thing with psych med.s, as awful as my symptoms are i want to feel them, otherwise I'll never know if something is working. Then you get into the spiral of taking one med for a particular symptom but needing another med to cover up a side effect of that one, etc... I worry it's a rabbit hole as it seems you do, too.

Im also supposed to be taking gabapentin but haven't started it yet. Do you think you'll take it?"

The pain is affecting your immune system and healing...that's why Dr. J wants his patients to take care of:
pain, sleep, mood, ...etc.

You will know if it's working because the pain meds don't usually take it all away...just dampen it...and then there's the inter-dose times where you do feel it creeping back in.

I get it...I don't want to be on them either....not because I want to feel the pain...but because I read about the side effects...etc. I'm already dealing with side effects of the abx...and I don't want to add more risks of side effects if I don't have to.
So, yah...I do get it... but I wanted to fill you in on why Dr. J thinks it's important for healing.

I understand the process and theory behind it. With crazy psych symptoms though it's so hard to designate what is what much of the time and if something blunts you out further it often makes you forget or not realize you're glossing over other stuff. What i notice with myself is that the more spaced out i am, the less i realize im spaced out. There's always that fear of a medication adding to that. So, i understand where Kentucky is coming from. I also understand Dr J's avenue and i feel we all know what makes us the most stable and strongest. For example mine is environemnt. No medication can replicate what low altitude, low humidity, clean air and morning sunlight can do to stabilize my health. We're all individual, though.
Posted 11/30/2018 11:48 PM (GMT -5)
I know for me my depersonalization is probably my worst symptom. its freaky as heck and its eased up so much. im also afraid if I take something like that and it were to make me more anxious then my depersonalization will creep back in. terrified of it actually.
Posted 11/30/2018 11:50 PM (GMT -5)

Aerose91 said...
Im exactly like you and i really respect this attitude. If I'm in pain, i want to feel the pain. If I'm depressed, i want to feel the depression. Otherwise how else will you know if something is/isn't working, if you blunt the symptoms? I told Dr J's clinic the same thing with psych med.s, as awful as my symptoms are i want to feel them, otherwise I'll never know if something is working. Then you get into the spiral of taking one med for a particular symptom but needing another med to cover up a side effect of that one, etc... I worry it's a rabbit hole as it seems you do, too.

Im also supposed to be taking gabapentin but haven't started it yet. Do you think you'll take it?

I think I am going to give it a try. if youd like we can start on the same day LOL.. we can either feel better or trip out together.. LMK your contact info. we can link up and take some neurotin together............................that sounds bad
Posted 12/1/2018 2:40 AM (GMT -5)
LOL KentuckyOConnor!!!

if you do try it, let me know how it goes.


I didn't find it helped my nerve pain...I started very low dose...and slowly increased...over several weeks...
Posted 12/1/2018 8:43 AM (GMT -5)
Kentucky- depersonalization/derealization are also my worst symptoms by far. We sound somewhat similar. You said yours has gotten better though, what has helped? Ive been severely dissociated for 6.5 years
Posted 12/1/2018 9:18 AM (GMT -5)

Aerose91 said...
Kentucky- depersonalization/derealization are also my worst symptoms by far. We sound somewhat similar. You said yours has gotten better though, what has helped? Ive been severely dissociated for 6.5 years



I’ve been on the doxy for about 6 weeks, I still have it but it isn’t so bad it smothers me... I literally just woke up and it got better lol and it hasn’t been as bad since then. Idk what helped it. I’ve also been on Wellbutrin for about 4 months... who knows... I just know I thank god every day that it’s eased up. I used to have a group chat with some guys I met in a POTS group on FB from Las Vegas, Mississippi and Florida who had it to. We used to say we were space monkeys. Mine gets worse the more tired I am. But I have a nice sweet spot about 2 hours after I roll out of bed that it’s pretty minimal.. we do sound a lot alike. Maybe the same tic bit us! Lol
Posted 12/1/2018 9:47 AM (GMT -5)

Girlie said...
LOL KentuckyOConnor!!!

if you do try it, let me know how it goes.


I didn't find it helped my nerve pain...I started very low dose...and slowly increased...over several weeks...


LOL I’ll let you know! Or rose, if I die.... I have bad medication anxiety. I’ll probably post 10 new threads on here once I take my first dose. I’ll just be sitting here with my blood pressure cuff attached to my arm holding my hydroxyzine in the other.
Posted 12/1/2018 5:14 PM (GMT -5)

KentuckyOConnor said...
I have bad medication anxiety. I’ll probably post 10 new threads on here once I take my first dose. I’ll just be sitting here with my blood pressure cuff attached to my arm holding my hydroxyzine in the other.

Lol. I'm the same way. I try to distract myself now, or I can't tell if it's a reaction or anxiety.
Posted 12/2/2018 4:34 AM (GMT -5)
Yeah.. it’s not any fun. I had a deep tissue massage today and honestly I feel pretty good. I was worried I’d feel bad after it
Posted 12/2/2018 8:15 AM (GMT -5)

KentuckyOConnor said...
Yeah.. it’s not any fun. I had a deep tissue massage today and honestly I feel pretty good. I was worried I’d feel bad after it

Probably moved some toxins around
Posted 12/2/2018 9:24 AM (GMT -5)
Sorry for my late reply.

I take Gabapentin and Trileptal under Dr. J's guidance. Let me tell you without these two meds my nerve issues would be unbearable and I'd probably of put a bullet in my head. It doesn't eliminate the symptoms but it does a good job dampening them.

I know these meds are used as street drugs but they've had no effects on me in that way they just provide more gaba to calm down my neurotransmitters.

Dr. J says everyone that has Lyme has some type of nerve issues hence why it seems everyone he sees needs some nerve type med.

Regarding my wife she treated Babesia for over a year and it was necessary to really beat it down. Once she treated the babesia the bartonella really came out.
Posted 12/2/2018 9:38 AM (GMT -5)
Rikky, does the gabapentin do anything for psych issues? Im kind of wondering why they gave it to me because basically my entire disease is psych issues, i have next to no nerve pain or issues
Posted 12/2/2018 2:32 PM (GMT -5)
Aerose - I've read it can be used off-label for anxiety. But, i'm not sure it would be the best medication for that.


I would discuss this with your NP at the next appt...and make sure she is clear that you don't have pain as a symptom....
In fact, you could make a phone call and discuss. Leave a message on the Nurse triage line...that you're enquiring about the Gabapentin prescription. They likely won't get back to you until tomorrow.

It is possible that it can be used to calm down the nervous system in general...and maybe that is important? ie as Rikky stated about all lyme patients having some nerve issues.
✚ New Topic ✚ Reply
12345