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Posted 4/23/2019 11:59 PM (GMT -5)
Dr J is big on treating symptoms that could be affecting your immune system (pain, sleep, endocrine, mood etc) concurrently with treating the infections.
He feels if you’re experiencing a high level of pain it will weaken your immune system.

Pain is my worst symptom.
I was prescribed Gabapentin in 2018 by the NP and I tried it but was only willing to ramp it up so far - after about two weeks - with no results I stopped.

Then at my last appt we discussed my pain and Dr J asked if I’d be willing to try a topical pain cream -

So I had it compounded and have only tried it once. (about a week ago) A tiny amount (size of a pea) - my husband put it on the left scapular area.
I didn’t really feel anything but the next day I did not have any pain.

It may have been a coincidence tho.

I tried it again tonight and will see if it helps.

My question/concern: How much of this is being absorbed into my bloodstream?

One of the ingredients is Gabapentin - will I need to wean off this cream if I start using it daily?

The directions say to apply 3-4 x daily.

Ingredients : Amitriptyline (4%), Clonadine (0.2%), Gabapentin (6%), Ketamine (10%), bacloven (2%), Lidocaine (2%)

Excuse spelling errors - the ingredients are abbreviated on the jar - I think I got them right.

Your thoughts?
Posted 4/24/2019 12:21 AM (GMT -5)
I did some reading on the ketamine - and it looks like it isn’t absorbed into the blood stream.
Posted 4/24/2019 6:32 AM (GMT -5)
Girlie
I’ve no experience with the cream you’ve been prescribed but that is awesome that it seems to have eliminated your pain. I hope that continues for you. Nerve pain is awful. Does Dr J have thoughts on ivig for neuropathy? I know you’ve had quite a bit of nerve pain. Does he believe aggressive treatment with abx can further damage the nerves? My daughters neuropathy flares badly with herxing. Worry sometimes when too much is just creating more inflammation/damage.

Post Edited (Upatnite) : 4/24/2019 5:38:09 AM (GMT-6)

Posted 4/24/2019 10:52 AM (GMT -5)

Upatnite said...
Girlie
I’ve no experience with the cream you’ve been prescribed but that is awesome that it seems to have eliminated your pain. I hope that continues for you. Nerve pain is awful. Does Dr J have thoughts on ivig for neuropathy? I know you’ve had quite a bit of nerve pain. Does he believe aggressive treatment with abx can further damage the nerves? My daughters neuropathy flares badly with herxing. Worry sometimes when too much is just creating more inflammation/damage.

Well I don’t know if it was the cream that worked - because I would have thought it would work within an hour or two - but it was the next day that I felt better.
I’m still in bed so not sure yet if last nights application worked ...

I haven’t discussed ivig with DrJ so not sure if his thoughts. I don’t think it’s an option for me - I’m in Canada so I would need a dr here to prescribe it.... and isn’t it a lot of $$$$$$$$$$$ ?

Re - aggressive treatment further damaging nerves - I think he feels the infections untreated do more damage... we’ve not had that discussion tho.
Posted 4/24/2019 12:25 PM (GMT -5)
Ok Girlie, thanks. hope the cream gives you relief. And yes ivig is expensive if not covered by insurance. I think a few who have immune deficiency or some types of neuropathy can get it covered by insurance. I think Dr H says it might be needed for some types of autoimmune neuropathy. Getting it covered is a different story.

Post Edited (Upatnite) : 4/24/2019 11:30:36 AM (GMT-6)

Posted 4/24/2019 6:53 PM (GMT -5)
I took a pain cream, well it had an effect on pain anyway - progesterone cream. It works on GABA receptors. And I did have withdrawal from it. But my GABA receptors were messed up at the time from benzos. Gabapentin is a hard one to get off of so I would wean off it just for that reason.
Posted 4/24/2019 7:34 PM (GMT -5)
I was using progesterone cream prior to diagnosis but it didn’t touch my nerve pain.

I don’t know if I have to wean off of the Gabapentin - as it’s topical.
I did some reading last night and learned that studies on ketamine in pain cream doesn’t show up in the blood - so hoping for the same with Gabapentin.

I’ll try to find some literature on the topical Gabapentin -
Posted 4/25/2019 4:52 PM (GMT -5)
Bump
Posted 4/27/2019 11:29 AM (GMT -5)
My concerns are if the ingredients are entering my bloodstream - and if so how much? Not sure I want to use it unless it’s minimal absorption.
(The whole idea of topical was because dr j knew I wasn’t taking the oral Gabapentin and he really encourages patients to take care of issues that he believes affects the immune system)

I tried it twice several days apart - jury’s still out on effectiveness - perhaps it needs to be used regularly.

One thought I had was maybe my nerve pain (which is CNS modulated ) is just on this continuous loop even tho the threat/instigator (active infections) is now gone,... and I need to interrupt that loop - break the cycle of pain.
Posted 4/27/2019 12:00 PM (GMT -5)
I would slowly work up to the full dose then taper off if it is causing too much impairment.
Posted 4/27/2019 12:22 PM (GMT -5)

acarined said...
I would slowly work up to the full dose then taper off if it is causing too much impairment.

There isn’t really a dose - “Apply to affected areas 3-4x daily.

I just don’t want to absorb any of these meds into my system unless it’s micro amounts and won’t affect me.
Posted 4/27/2019 12:28 PM (GMT -5)

1000Daisies said...
So, Girlie, did it help?

What are your concerns about this cream?

I'm more conservative than most people on skin products - eg I use coconut oil soap, very limited OTC skin products, EOs, natural shampoos/conditioners, etc. But I take the perspective of pros vs cons... and trying the least invasive option and working my way up if it doesn't work out. In this case, I'd be more comfortable with the cream over a lot of oral products.

I hope you find something for the pain - maybe this is it! Fingers crossed!

I know that I was beyond happy when I finally found an OTC pain relief cream that resolved my persistent elbow/arm pain that I had for 1 1/2 years. Honestly, I realize it's not nearly as bad as others pain on this board, but that chronic pain did get to me dealing with it for that long.

That’s great the pain reliever worked for you.
Yes - it does get to you long term - 5 years is way too long. (For me)

I do use some more natural personal care products - deodorant, body wash, and eo’s -
(I know it sounds strange coming from someone who is on long term antibiotics : )
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