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Posts (38)

21 minutes ago · CBD oil for pain in Chronic Pain

Thanks Colleen,
I did not realize that either. Good to know.
Carl

23 minutes ago · Undiagnosed Autoimmune?? in Autoimmune Diseases

Thanks John, it does not work for me either.
If anyone wants to get there just type in ilads.org into your browser it should pop right up.

2 hours ago · Undiagnosed Autoimmune?? in Autoimmune Diseases

Amberlynne5,

Your symptoms and lack of diagnosis sound very similar to mine.
Sundance references a lab to send your blood to for Lyme testing. It is Igenex in Palo Alto, Ca.

https://igenex.com/

Any licensed Dr. can send your sample in for testing if they r willing. And like most things Lyme related it was not covered by insurance.
I had my Dr. send my blood sample in (very specific instructions -on their website) and came back positive.
I have been retested due to my doubts (most all my Dr.s poo-poo’d it) and I was positive again.

I’ve run the Dr. and specialist circuit several times w no results. Until I found an LLD (Lyme literate Dr.)
Go here to find some suggestions.

https://www.ilads.org/

Due to the stigma of treating “chronic” Lyme there are not a lot of drs who treat it and so it may take 1-6 months to actually get in to see one.

I would be glad to let you know more of my journey if you would like, but either way, get in touch w a local Lyme support group and they can give you advice on Dr.s and diagnosis.

God Bless and hope you find answers or at least a direction.
Carl

Mon, Mar 25 3:17pm · Pain stimulator in Chronic Pain

Hi,
Yes, I have a regular Stimulator (5 years ago) and a DRG (Dorsal Root Ganglion) Stimulator (3 years ago) .
I know many people that say that they get life changing results with the stimulators.
Unfortunately I was not one of them.

My trials were amazing, but when the leads healed into place they did not provide much help for me.

I just had a Medtronic Pain pump put in ~2 weeks ago and it is working very well so far (they are still titrating up the dosage).

2 pieces of advice.
1) Find out ALL your possible alternatives so you can make an informed decision (many Dr.s only work with one brand and so do not offer the others as options).
2) Be sure you get all the background on the Dr. putting it in as they may not actually be the best. (my first Stim unit was revised 3 times. then I moved to another state and I found out there was a way that they could have placed it correctly but since it takes 45 more min on the table they did not, so they did it again)

When I was advised to do the Stim units that is all I was told there were – and I may still have tried them.
However, since over the years the only med that helped was dilaudid, it would have been nice to know that there was an alternative out there that could be as or more effective.

Again, this is my story. Lots of others out there.

I am not trying to discourage you, but for the stim units it really depends on what position the leads finally heal into place and your personal nerve quirks.

I wish you the best.
Carl

Sat, Mar 23 2:16pm · Does anyone know or have a INTRATHECAL PAIN PUMP? in Chronic Pain

The patient ambassador I talked to has had a Medtronic Pump for about 25 years and still loved it.

Sat, Mar 23 2:13pm · Does anyone know or have a INTRATHECAL PAIN PUMP? in Chronic Pain

I had one implanted about 2 weeks ago.
For reference I also have 2 Stim units implanted (6 surgeries – due to doctor issues and one due to mechanical failure).

This surgery was outpatient and was the least painful recovery than any of the other ones.

In 2 weeks I already love the unit. They titrate up slowly but it has already given me more stable relfief than the pills, stimulators, or medical cannabis ever did. Plus I don’t have to carry pills around or worry if I forgot them at home.

I’d be glad to talk more if you want. I’ve been fighting chronic pain (as a result of Lyme disease) for more than 10 years now. Tried many different things.

So far this is the best hands down.
Carl

Dec 31, 2018 · Lyme disease and neuropathy in Neuropathy

@tdemaria,
I have Lyme disease and bilateral peripheral neuropathy.
Can you tell me what test you had to test for neuropathy?
I too had a negative test result from my initial test for Lyme.
Then I went to a Lyme Literate Doctor who initially diagnosed me with Lyme based on my symptoms. Then confirmed that diagnosis by sending my blood off to one of two testing companies that are not supported by the CDC and so were at liberty to show all the test results (I sent it to Igenex in Palo Alto, California). Mine came back with several positive markers of Lyme.

I had it restested a few years later and again showed several positive markers for Lyme.

I do not know for sure that my neuropathy was caused by the Lyme, it had started many year before, but based on symptoms I likely contracted Lyme when I was in my early teens.

I would suggest asking your PC Physician if he would send your blood out to Igenex and have it tested properly. Igenex has all the info on how to do it on their website.

I wish you the best of luck.
Carl

Dec 25, 2018 · instep cramps ruining sleep in Sleep Health

jimk849,
I have sporadically gotten extreme cramps in my feet, ankles, calves, and lower thighs that would continue to hurt on thru the day. They had gotten worse in the last 6 months. (I've had total knee replacements on both knees about 1 year ago too and worried about getting them during recovery – but like you I was spared that during my recovery).
I've tried the banana thing, stopped caffeine for a year at a time, increased my fluid intake, tried various methods of stretching, etc. but never found any relief.

About 6 weeks ago they got worse – every night and in a different place each time, but they would recur after getting back to sleep and even when I tried to get out of bed.
I found that after the first episode at night I got some relief by sleeping with a hot water bag on it, but it worked inconsistently.
As someone above mentioned I finally picked up a potassium supplement and have not had ANY more since I started taking them daily.

If I missed you saying you have tried that already I apologize and pray that you can find some relief.
I will pray for you as I know how having them compounded my own already untreatable lack of sleep.

Carl