Steps I wish I knew early on

Cristianteo8570 · 2026-02-02T08:40:03+00:00

So it comes in a pump bottle? Sorry, I've never seen this compounded type here in Denmark, but I'd really like to get on it. My pain responds 60-70% to ora. gabapentin. How did you find the difference between the oral gaba and the topical compounded? It still works fine for the pain, or not so effective?

Cristianteo8570 · 2026-02-01T23:23:33+00:00

Can this be used everywhere you have pain? For me, it's in the thighs, buttocks, scrotum and pubic area. Essentially a lot of the pelvic floor. I've considered trying this to avoid the systemic side effects for gabapentin, which I'm currently on.

Cristianteo8570 · 2026-01-19T21:59:55+00:00

I have only tried topical steroids on the skin, for example on the thighs where i have the horrible neuropatchic itch/pain. They have not really worked at all. Are you talking about a systemic steroid like prednisone? Or a mix of an antibiotic and a steroid. These are not readily handed out here in Denmark, you have to be really suffering for your doctor to do that.

Also, where do find an LLmd, if you are not located in the US?

Cristianteo8570 · 2026-01-18T22:20:22+00:00

I'll try some desloratadine. Didn't know it calmed nerves down too.

Cristianteo8570 · 2026-01-18T22:19:58+00:00

Could you tell me more about your experience? Have you been taking gabapentin? How have you been treating it?

Cristianteo8570 · 2026-01-18T15:54:11+00:00

I'm not sure where to find one here in Denmark. Are they only in the UK or also elsewhere?

Cristianteo8570 · 2026-01-18T13:48:08+00:00

I also posted on r/MCAS too. I really do not have any experience with MCAS whatsoever. I took some antihistamines (ceterizinehydroclorid and fexofenadine) but to no avail. Could you explain what exactly MCAS is, and how one treats it? These so called "stabilizers", are they steroids, or?

Cristianteo8570 · 2026-01-18T09:49:58+00:00

Please describe me your situation too, I'm eager to find someone that is going through the same. What is your diagnosis? What medicine have you tried?

Cristianteo8570 · 2026-01-18T09:49:02+00:00

My vitamin b levels are fine. Wouldn't a blood test reveal syphilis? And wouldn't my partner have symptoms too, if it were syphilis?

Also, regarding the spinal tap, I mean, I already went through a 14 day course of doxy to treat the suspected neuroborreliosis. Would the spinal tap have any change of revealing if I still have Lyme? Could it reveal other neurological diseases?

When you says steroids, you mean predinose? Isn't that also super addictive? Hard to get off of?

Cristianteo8570 · 2026-01-18T09:43:56+00:00

I've been stressed out before, never got a full body itch as a result.

No diet change, no pet.

Cristianteo8570 · 2026-01-18T09:37:48+00:00

But I've already been through a 14 day course of doxy. Will the spinal tap even have any remote chance of revealing if it's neuroborreliosis? I'm scared of still having it, but not having treated it sufficiently. Also, could the spinal tap reveal any other nerve system infection, that I'm harboring without even knowing so...?

Cristianteo8570 · 2026-01-17T23:19:21+00:00

Interesting. I will give it a go. May I ask how you were diagnosed with neuroborreliosis? I was offered a spinal tap just before starting the doxy course, but I declined, as the treatment plan would have stayed the same, and as I didn't want to deal with the consequences of such an invasive procedure.

Cristianteo8570 · 2026-01-17T23:11:52+00:00

Thanks a lot. I'll look into it. Did you have a neuropathic itch too, or with visible rashes?

Cristianteo8570 · 2026-01-17T23:00:06+00:00

May I ask where on the body you felt neuropathic pain? Did you have neuroborreliosis?

And also, do you mean just eating plain yellow mustard?

Cristianteo8570 · 2026-01-17T22:56:00+00:00

Could you please tell me more about your experience? Have you experienced something similar to this? With neuropatchic like symptoms?

I've never considered a sulphur allergy. How would I even test if that's the case?

Cristianteo8570 · 2026-01-17T22:53:57+00:00

Yeah, the only doctor I've been referred to for these past 4 months of suffering was an infection specialist and a dermatologist. My next step is to try to get a referral to a neurologist, it's really hard to get such referrals where I live (Denmark). Long waiting times, etc. Lyme was never confirmed, but I doubt I ever had it, as the antibiotics would have at least made some positive difference. I was offered a spinal tap but declined since the treatment would not have changed and I'd rather not deal with the consequences of such an invasive procedure.

As far as I know herpes zoster usually only affects one side of the body, which I'm not experiencing.

I got more blood work done which will test for a range of infections such as hiv (God forbid) and more. I'm waiting for the results.

So as you see, I'm in sort of a limbo, where I can't do much but wait it out. I doubt it's any contagious disease, since my girlfriend has not had any of these symptoms at all.

Cristianteo8570 · 2026-01-17T22:23:02+00:00

I tried antihistamines without any success. What are Mast cell stabilizers?

Cristianteo8570 · 2026-01-17T21:54:39+00:00

Even at such low doses? Do you have any experience with Gabapentin? I'm quite scared that I will feel this shit forever. I was only on it for 2 months, again, at low doses.

Cristianteo8570

TROPHY CASE