New to AP–any advice for severe back and neurological symptoms?

[Nonnie]

So, I posted my journey a few months ago, but I was tentatively diagnosed with Crest after showing the pos. blood work, esophageal problems and lots of autoimmune symtoms. 

A little after that (April) I found out I have 4 herniated discs and a syrinx on my spinal cord. 

I am seeing Dr. F in Scottsdale, AZ and the blood work he did shows I have an infectious disease (not sure which yet)…I am planning on doing Igenix testing. 

Right now I am on Mino 50mg. 3 x's a wk and working my way up to 7 times a week.  I am in PT for my back but my back seems to be getting worse–could this be herxing?  I am most concerned about the syrinx on my spinal cord.  I have no definitive diagnosis yet, so dr.s seem to shrug off when I tell them I have an infectious disease.  I am convinced it's all related somehow. 

The good news is I am not showing any symptoms of CREST right now. 

My questions:  does anyone else have severe back problems as a result of lyme or similar illness–any advice?  I've only been on AP for about 6 wks now.  My back seems to be getting worse each day.

Should I be trying to move quickly to up my dose of Mino or trust the Dr. to steer me in the right direction?

[Maz]

[user=2229]Nonnie[/user] wrote:

My questions:  does anyone else have severe back problems as a result of lyme or similar illness–any advice?  I've only been on AP for about 6 wks now.  My back seems to be getting worse each day.

Should I be trying to move quickly to up my dose of Mino or trust the Dr. to steer me in the right direction?

Hi Nonnie,

Wonderful news that your crest symptoms have regressed! 😀

I think you might find this past discussion thread to be of some interest. Ruth was doing a lot of research for a friend who had a tick bite on his back that evolved into a benign spinal tumor, called an “astrocytoma.” I was quite interested in this, as I also have a friend with a daughter-in-law who was suffering similarly and her spinal tumor was causing MS-like symptoms and leg paralysis. She was told it was inoperable and degenerative by some top neurologists who didn't give her long to live. Not listening the halls of academia, my friend took her DIL to see one of the top LLMDs in NY and, on antibiotic therapy for Lyme and coinfections, she is now heading towards remission of all her MS symptoms.

http://rbfbb.org/view_topic.php?id=2680&forum_id=1&highlight=ruth+lyme+tumor+friend

Dr. F. is a pretty reputable Lyme doctor and is doing much research into stealth-like, pleomorphic organisms, so you should be okay in his hands. It can take time to figure out which offenders are in the Lyme mix and which antibiotic protocols a patient will respond to, but hopefully it won't be long until you're well on your way with appropriate treatments.

Peace, Maz

[Nonnie]

Thank you, Maz.  Yes, it is wonderful that I am not feeling the autoimmune illness right now.  I pray that it stays away for me and for everyone here. 

It is such a confusing journey to have all these things happening in my body at once–I have been trying to stay on top of sorting through everything from dr. to dr., but most of them are so flippant–it makes it very difficult. 

Many of these drs seem to think all these things are coincidence–that there is no one cause and I just happen to have all these simultaneous diseases–that's why I want to find out exactly what infectious disease this is. 

I have faith that we will all get better…:)

[eann]

Hi Nonnie,

I have RA/Lyme and am being followed for MS lesions also. My worst pain is in my spine. The spinal pain is what led me to the LLMD, because it doesn't fit with RA. Mainstream doctors don't seem to connect the dots with all the different symptoms. My Igenex was positive.

I'm glad you are going to get the Igenex testing. I hope you get some answers and some pain relief soon.

Sincerely, Ann

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