Hi. I am a 51 yr. old female with a non-length dependent sfn. The burning and pain started almost a year and a half ago down the back of one thigh and continued to spread to almost everywhere. It started after a tick bite and a 24 hr. gastrointestinal episode. I have three neg. lyme tests, including spinal tap - went on 2 months oral and 2 weeks iv. antibiotics. I have had numerous tests, all neg., first skin biopsy showed axonal swelling and branching with normal density, but a recent biopsy shows reduced density at ankle, normal at thigh. i have seen 5 neuros, last one at hopkins who suspects a sensory ganglionopathy. I have a high pain threshold, but this is very challenging! I am on gabapentin. I have just started numerous supplements under the guidance of a nutritionist who works with a neuro.
Just here for support and ideas. Thanks!

That sounds like a huge challenge.

Can you tell us what supplements they suggested?

Welcome to the forum.

Welcome and happy searching. I am a new member as well. Besides B12, which I assume was suggested, what other supplements do you take and in what amounts?

They are a lot. The recommendation was to do i.v. and i.m. injections of supplements, but this was too costly for me, so I opted for oral:
sublingual methylcobalmin (b12) -1,000mcg, nano cell liquid CoQ10 - 160mg, E-complex -1200mg, CLA - 2,000mg, vit D3- 5,000iu, N-Acetyl-L-Cysteine- 2,000mg, fish oil (omega 3's-5,600mg), alpha-lipoic acid-600mg, inositol-4g, p-5-p (B6)-100mg, folate (L-5-methyl tetrahydrofolate)-3200mcg, acetyl-L-carnitine, multi vit and minerals.

If you contact LizaJane, she'll tell you that Lyme is known
to not test positive, in many instances.
Also, it 'hides' and is dormant until something triggers it into activity.
The triggers are not fully understood and it can be dormant for years, not months, tending to be not treatable until it flares.
See her posts and PM her.

Nice list. I don't see anything weird or unnecessary.
The CLA is a stretch, but it is not "harmful".
Watch that inositol, over time it made me anxious and same with my son. I got edgy on 2 grams. I can see it is costing you too!

Welcome jahk! I also have SFN (though mine is idiopathic for now) and am on Neurontin and Methadone. The pain is horrific but I'm learning to live with my condition and my family's help and understanding are key.

Hang in there my best wishes for you and your family.

Jay

Thanks, mrsD. The inositol seems high to me, also. I e-mailed my nutritionist about it and also asked about the CLA. What is your nutritional backround? What do you think about doing iv. and im. nutrition?

to the forum!

Your story sounds similar to mine in a lot of ways except that my lyme tests came back positive.

Please make sure that you are using a reliable lab for lyme testing and that you are dealing with a doctor who is familar with lyme. Spinal taps are notorious for false negatives and labs like quest just aren't the labs to use.

My gut tells me that if this started with a tick bite that there is a good chance you contracted lyme and the fact that you took some antibiotics means someone actually thought you did also.

And by the way, a negative lyme test does not mean you don't have lyme...it could mean you are not producing lyme antibodies, etc and also lyme is a clinical diagnosis in some cases.

-David