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My chronic lyme disease story

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Posted 12/12/2015 2:05 AM (GMT 0)
Healingwell has helped me so much since the beginning, I wanted to share and say thank you to everyone on this site who has helped me along the way :)

After 2 1/2 years of battling lyme disease I have decided to share my story. This is the first of many chapters. Feel free to share, as my goal is to reach as many people as possible. My story needs to be told...it is not only my story but the story of so many of us out there-suffering every day...

Click the link below :)


/joeyphoenixblog.wordpress.com/2015/12/11/my-lyme-disease-story/
Posted 12/12/2015 2:22 AM (GMT 0)
Joey-Thanks for sharing your story.
I dealt with spinal issues before getting Lyme. My physical therapist told me in school they were taught that nerve damage feels like our blood is acid. I think that's a very apt description.
If your nerve damage is permanent has anyone ever mentioned nerve blocks to you? If a nerve block works they can then do a Radiofrequency Ablation which lasts much longer. This blocks the nerve from sending pain messages. It could give you some much needed relief.

Janet
Posted 12/12/2015 2:59 AM (GMT 0)
Hi Janet,

Thanks for reading!

Unfortunately, those types of procedures are not for small fiber neuropathy, they are for larger nerves.

Thank you so much for the support though :)
Posted 12/12/2015 1:52 PM (GMT 0)
Thanks for sharing your story. You're a great writer! I am sorry you are in such pain and hope you find something that works soon. I have a feeling you will.
Posted 12/12/2015 2:08 PM (GMT 0)
Know the radioactive feeling...
And I compassionately realize this is a nightmare journey for you--But what makes you think that the body cannot regenerate & heal this? Have you tried LDN or considered acupuncture?
Posted 12/12/2015 6:26 PM (GMT 0)
Joey - I am so sorry you are suffering from the horrific nerve pain.

I have a few questions: i may have missed it in your writing - but have you finished treatment?...or are you still treating.

How do you know that the nerve pain is permanent?
At what point in your illness/treatment did you get that?


Also (sorry for all the questions) - Does your LLMD think it's permanent?

I have nerve pain, but I am hoping it will resolve with further treatment...
Posted 12/12/2015 6:28 PM (GMT 0)
Have you thought of trying the LDI treatment?
Posted 12/13/2015 3:02 AM (GMT 0)
Thanks KYo07 for the support!! I am looking into a few treatments; ketamine and lidocaine infusions. I have a good feeling about this :)
Posted 12/13/2015 3:12 AM (GMT 0)
Thanks Happyjo, well I don't have any legitimate proof that my neuropathy is permanent but it has been severe for two years now despite 8 months of IVIG. I am looking into seeing a doctor to try LDN soon!

Girlie, thanks so much for the support! What is LDI treatment?

My neuropathy started from lyme but got so much worse from Flagyl, which is known to cause a permanent neuropathy. So, it's a combo of lyme and a toxic drug reaction (rare side effect though).

My llmd has never seen such a severe neuropathy and after two years of treating lyme and co aggressively, it has not gotten better. We are in agreement that it is not a symptom from an active infection.

I am still treating, combo of oral antibiotics. I had been in remission but recently had a relapse. We are going to start IV ceftriaxone for an extended period to see if we can achieve a full lasting remission.

I have known people to heal from strictly lyme neuropathy. And, if treatment doesn't help, IVIG has healed many with lyme neuropathy.

My case is just very rare and severe. Your neuropathy can most certainly get better with treatment!!
Posted 12/13/2015 4:10 AM (GMT 0)
LDI = Low Dose Immunotherapy - it's quite new here in US and Canada as a treatment for Lyme..but may have been around for years in Europe.

I am in contact with someone who is getting treatments from a ND. She has treated Lyme and co's for a few years and has one symptom left - she gets red patches on her upper legs when she goes off her medication (I think it's also painful). She was told it was perhaps an auto immune reaction.

I think there are a few forum members trying it.

I googled it - here's the link to some information:

www.wellsphere.com/lyme-disease-article/ldi-immunotherapy-for-lyme/2151631
Posted 12/13/2015 4:17 AM (GMT 0)
Here's another link to LDI information:

/www.specialtynaturalmedicine.com/lyme-disease-ldi/ldi-for-lyme-faq/
Posted 12/13/2015 4:29 AM (GMT 0)
Awesome, thanks!!
Posted 12/13/2015 4:32 AM (GMT 0)
I will most likely try it if I don't get better after I've treated long enough.

In a few months I will hopefully hear if it's helping the lady I am in contact with.
Posted 12/13/2015 4:38 AM (GMT 0)
The name of the symptom the lady I know using LDI is Erythema Nodosum
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