quote:

Originally posted by jimb888:
As we, as a group, tend to be outdoors oriented folks, don't overlook tick borne diseases as the source of the problem. There are several versions of Lyme that have been cropping up recently, some are not ever testable. You won't be seeing a red rash or circle either. I'm talkin Texas. I'd research that, and make sure that they have tested for all of them.

I've got lifetime care from the VA if I wanted it, but I don't trust them and haven't been back after my initial stay, preferring Kaiser to fix me up when needed. It's important that you research everything you can so as to be your own advocate. Doctors can be either awesome resourses or total jackasses who will blow you off depending on the day or even the time of day.

https://bionews-tx.com/news/20...-around-study-finds/

And this one will really open your eyes: http://whale.to/m/mycoplasma5.html

Good luck!

I've been doing tons of research on my disease, and also on every medicine they prescribe. I want to know the facts and what the drugs do. I am currently taking 18 different meds daily with another 4 that are as needed.

quote:

I'm not sure what he prescribed, I can't remember what he told me, and I don't have it yet.

And who cares if it makes me dizzy or fuzzy, I'm already only about halfway coherent due to all the other meds I take. One more with those side effects can hardly make things any wors
When I go in for my next appt I will definitely seek a referral to the pain clinic

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Sounds like you are very much on top of your care. That is great. Many people do not feel fuzzy headed with neuropathy meds, I was just mentioning that side effect because it is pretty frequent. I do not think referral to the VA pain clinic is a good idea, because in your case you are already seeing the expert. VA pain clinics are often overburdened with very difficult patients who have substance abuse issues and psychiatric problems. Of course your experience may be different.

Autoimmune covers a bunch of things, but generally they don't know what causes it. One person can find a fix that will not work for the next 100 folks. Sometimes something as simple as a food allergy can cause horrendous effects for a person. In response, the Dr's trial and error medicine to see if any thing will work. So good luck with all that. I was hoping that tick borne pathogens were not overlooked as a source of your issues, cause Texas has that going on despite official denials. A & M University has a mapping project going on now.

From https://medlineplus.gov/ency/article/000816.htm "The exact cause of autoimmune disorders is unknown."

It's on the top of a list of frustrating things that suck, wish you well on your search for good health.

Yep, I have ideopathic Membranous nephropathy. They have no idea what caused it, there's no history in my family, I just got it. Approx 75% of the people with this disease it can be traced t something else, Lupus is a big one for this.

The biggest problem is getting my kidney docs to prescribe anything effective. I'm going to push hard for a referral to the pain clinic and if I can't get it, I'll just do a walkin.

Just saw my private family doctor this morning, he at least wants to help and get me through this, so he prescribed hydromorphone for the general pain and gabapentin for the nerve pain. Just took my first doses a couple hours ago, and it is already helping and he told me it'd take a few days for me to feel the full effect. It's making me more groggy and sleepy than I already was, but I don't care about that in the least. If I have to pay out of pocket to get the help I need, then I'll pay out of pocket.

When this first started I was tested for dozens of diseases and causes, everything was negative except the kidney biopsy, and from my research it's easily identified that way.

quote:

Originally posted by Kadin:
gabapentin for the nerve pain

About a year and a half ago I got slammed with Guillane Barré. Neurologist prescribed Lyrica which did not seem to do a whole lot. Primary care doc changed that to gabapentin, which seems to help a lot more, as well as being one tenth the cost.

My wife is a big believer in "natural" stuff. She read that fish oil is good for nerve health, so she wanted me to take a daily fish oil capsule. I figured that it couldn't hurt, so I've been doing that in addition to the gabapentin, and the nerve pain in my feet has gone way down. Don't know whether it has anything to do with the fish oil, but something is working.

quote:

Originally posted by ulsterman:
I thought most VA's offered transportation?

See if they have a pain management specialist or get a referral to one.

My experience with the VA has been very good. The specialist I saw was in constant contact with my primary care doc and they worked in tandem.

The experience we had at the VA for my youngest grandson has been one HUGE Mongolian Cluster Fuck.

Seems like they are using the vets as guinea pigs to try new medications. OH! That made you puke up last months lunch? So try this one instead. Oh, that one gave you complete body seizures? Try this one that is brand new. Cost for the 30 day supply was (IIRC) $80K.

We need to get rid of that mess, give every vet a "care card" good at any medical facility in the country!

quote:

Originally posted by Elk Hunter:

We need to get rid of that mess, give every vet a "care card" good at any medical facility in the country!

Absolutely. We'd get better care and not have to drive for hours to the only clinic around. I'd love to be able to go anywhere for my care. Baylor hospital is great, very close by, and they have a great nephrology team