Randy, I am leaving for 5 wk vacation where there is no electricity and hence no computers, (except for the laundromat).
I am very busy packing as this trip is long and where we go remote so it is sort of like a wagon train thing...if you get my drift. LOL As this week approaches Sat I will be online less and less.

When I get back, I'd like that information, and by then you will be activated for sure.

I am glad it is working for you so far. That patient I helped a few years ago remains in my mind exquisitely, crying and showing me those dusky black fingers! I'll never forget it...and how she turned around so quickly.

I don't know about choline specifically for PN... but choline in general is very useful for restoring membranes of cells. It also makes up acetylcholine the neurotransmitter in the nervous system.
Some of our foods now are enriched with choline, and some children's vits now have it added (kids have neuro issues and sensory integration errors in development now suspected of being choline dependent.)

Choline certainly can't hurt if you want to try it. Some of the products have a short shelf life, so check for rancidity or odd/off taste and don't use if it is present. The granules can go bad quickly.

For nearly one year I was negative for ANA and SCL-70, even though these are two key tests for SD. And being negative for these tests is common for SD folks. Fortunately I have remained negative for SCL-70. However, I did become positive for ANA as tested in Feb 08. My titer was 1:320 and my pattern was speckled. By the way, I believe there is significant debate on the usefulness and interpretation of the pattern types, as well as the value of your titer over time....i.e., once you're antibodies have shown, your antibodies have shown, whether you are getting better or not....

Never the less, my ANA has shown a terrific decrease since being on AP. I'd put in a graph here, but I'm probably too new to be permitted, so here are the values without specifying normal range:

2/08 1:320
4/09 1:160
12/09 1:80

Also, another key SD test is RNA Polymarase III. My values for this have also decreased markedly since being on AP:

12/08 98
4/09 87
12/09 56
4/10 36

There are numerous other autoimmune values (e.g., ESR, RF Factor, C Reactive Protein, and others) that have markedly improved into normal ranges, but I won’t go into them now.

Randy

That is really an improvement!

A current biological theory exists now that points to some infectious agent as the trigger for most chronic disease.

Once in a while these articles appear in upscale magazines who monitor the sciences.

Your experiences are certainly pointing in the direction of proving that theory.!

You can still send me PMs while I am gone. But most likely links I cannot access until I return. While I have now a tiny computer access...it depends on the free wifi at the laundromat which sometimes is "down" and not reliable.

I really appreciate your coming on here at NeuroTalk and sharing your experience. I am sure others will profit from these posts too!

Thanks for the reply Mrs D

Your PMs should be active now. However it is a short time more before links become active. I really have to confess I am not sure you can put links in a PM yet. But give it a try.

Well that is interesting, since I am highly + on ANA, and nucleolar...I run 1:640 to 1280 and have many sclero like things going on. I have a 'working' diagnosis of Sjogren's, but the thought is, my issue right now is undifferentiated UCTD. My PN is autonomic and sensory but is bad enough to affect motor.

I can't take any antibiotics since my esophagus is a mess. I tried a long course of doxy and it didn't do me much good....however, I get IVIG, which is I guess, nature's antibiotic. Docs around here won't diagnose sclero without a +scl 70...if the lab is negative, they say you have something else. I keep saying I feel like I have a wet suit on that is 3 sizes too small. I have lung, GI, cardiac and apparently kidney issues....(I'm fine tho, really, I am.)

[QUOTE=cyclelops;677607]Docs around here won't diagnose sclero without a +scl 70...if the lab is negative, they say you have something else....QUOTE]

Garbage!!! Total Garbage! I do hope you do not have SD; however your symptoms are very characteristic. MANY SD folks are -'ve SCL-70, like me.

There are very few decent docs who know SD because it is so rare - that is why is take about 9-10 months to properly Dx SD. You need to think outside the box and go to where the expert(s) are. In the long run you not only save your money, you save your life.

Ref AP, most Rheumatologist have no idea how to properly administer the protocol; you need to go to one of the true AP docs in the country. Again, it;s well worth it. For example, Doxy is not the AP of choice for SD - it's minocin.

Please feel free to PM me and I can possibly help you further.

Randy

I have been at this diagnosis thing for 15 years!

I am ok with the IVIG. The doxy caused some real issues for me, including a case of mysterious oncholysis. I know some sclero folks who receive IVIG, and it is pretty cadillac treatment. I have been on long term antibiotics in the past for Lyme, which was caught in the earlier stages with an EM rash, so, I am familiar with antibiotic protocols, as well as the AP protocol, including Marshall Protocol, which I opted not to do.

For right now, I feel the IVIG is the way to go.

However, on rheumatology, I have YET to run into one in my neck of the woods who will go out on a limb and diagnose seronegative (ANA cases). The neuro says they exist, but, in gneral the thought is that to really substantiate things you need that+ANA/ENA.

At the rheum dept. where I used to go, they won't diagnose any one with a negative ENA, let alone ANA....regardless of symptoms. I am fortunate (if that is the right word) to have a +ANA with specific pattern that has held pretty much thru the years. I just stopped going, since the rheum has nothing to add and is a pain to deal with.

I, for one, know that either I have a hideous case of SjS, or it is Sclero. It would not matter, as autoimmune disease is all similar and I get very good treatment.

PN is considered fairly rare in sclero, but, I feel it is underappreciated.

When looking at the diagnosis of sclero, I don't think anything is lost on trying a course of antibiotics provided one doesn't use the ones that cause PN, however, long term, I would be careful of opportunisitc organisms and esophageal erosions. IVIG with Cellcept is the usual treatment of Sclero these days.

What is ENA?

Ooops, I'm sorry. I read the post and some one stated that you were a medical professional and I just assumed knowledge of ENA.

ANA is the basic test done to determine if you have any antinuclear antigen.

IF the ANA is positive, then they move to an ENA. Extractable Nuclear Antigen test. It is a blood test. This test looks for the most common nuclear antigens. It consists of a number of tests including the Scl 70, SSA, SSB, anti Jo, PML, Antismith, and rnps.

You must have had it done since you mentioned your Scl 70 was negative.