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Posts (39)

Mon, May 27 11:48am · Botox for Migranes in Chronic Pain

HI,
I had severe crippling cluster migraines for almost 7 years. The traditional Dr's tried out every new anti-seizure and migraine drug that came out. The last thing in their bag was the Botox. 25 shots in the head later and it did not help at all. they said when a new drug came out they would let me know.

I finally was referred by a friend to a local Naturopath. He worked thru diet and nutrition. In 6 weeks they were down to 1/2 and in 6 months they were totally gone. I've only had a couple in the last 10 years.

Everyone's issue and body are different. And at the time, insurance would not cover it, but it was worth every penny to be cured.

We called him the Voo Doo Dr. (He thought it was funny) because he used the a method called Applied Kinesiology (muscle testing).

Many people (esp traditional Dr's and me at first) said it was/is quackery – I completely disagree now.
Traditional western medicine ran about $200,000 worth of testing and drugs on me and came up with nothing.

He "cured" me in 6 months.
Our bodies are incredible and able to repair themselves IF we have not already become toxic in areas due to our western lives.
He actually said – my goal is to get your body back to a baseline where your own immune system can heal your body.

I was at the point where I would try ANYTHING, so what did I have to lose – my migraines I guess.

Carl

Mon, May 20 11:26am · CBD oil for pain in Chronic Pain

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

Mon, May 20 11:23am · 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.

Mon, May 20 8:51am · 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