Waging War on My PN
 

Hi Everyone,

I'm new here, but not new to PN. My PN started around Feb '08 and it is attributed to Diffuse Scleroderma (SD) (a pretty nasty autoimmune) that I have had since May '07. The small nerve PN was dx'd by a Mayo Scottsdale Neurologist after EMG's and skin biopsies, etc.

I have very successfully used Lyrica which made all the difference in the world when my PN was at its worst, and as I battled my SD using an antibiotic protocol (AP). Fortunately the AP has worked terrifically and my SD is almost in remission. My PN has improved quite a bit also, but it is not gone. I weaned off Lyrica around Jan '10 and started using the ReBuilder device. I wasn't sure it was doing too much in the long run, though when used it did help sooth my burning feet (for a while). Recently I lost the ReBuilder during some travel and I have been off it for 3 wks. Now I believe my PN is worse again or at least a lot more noticable, and I have restarted taking Lyrica 100 mg at bedtime and mid-day in order to be more functional and get a better night sleep and not be so fatigued during the day. I am trying (so far unsucessfully) to get another replacement ReBuilder cheaply.

I used to look over the Peripheral Neuropathy Assn Board, but it has always seemed to be unutilized. So, it is fantastic to finally find a decent PN site and BB to help me wage war on my PN. I look forward to getting great advice and encouragment as I win this war.

Randy

Very interesting... glad you are improving. Scleroderma is quite a battle in itself!

May I ask what antibiotic? A few years ago I gave a talk to our State's local SD group, and no antibiotics were being discussed then. Is this new?

Many of them were suffering from low B12 due to aggressive use of proton pump inhibitors for GERD, which seems pretty common in SD patients.

Also magnesium is very useful for them. One gal had black hands from severe Raynaud's and had tried all the drugs available to possibly increase her circulation. I had her on Magnesium and Vit E and she thus avoided the amputation, which was held over her head! Because of my working with her, I ended up speaking to the whole group.

So I am very curious about the antibiotic.

mrsD,
I am just curious... are you a doctor?
Please don't take that as a critical question, but just a curious one--I am just wondering. You seem to know so much about a number of different medical conditions. Have you had formal training of some sort? If not, how have you learned so much of this? Just researching in your free time?

[QUOTE=Sarah Mae;676276]mrsD,
I am just curious... are you a doctor?
Please don't take that as a critical question, but just a curious one

*** If you click on her profile, she identifies as a member of the "community help team" or something like that (which means she serves in a moderator capacity -- a designation available only from the owners of this BB). It also identifies her as a retired "medical professional".

*** I don't think she would want to specifically identify as a doctor, even if she was, because she is retired. As a licensed professional myself, I rarely share the exact nature of my license because despite any and all disclaimers I provide, someone unknown to me may "rely" on something I may have posted with unhappy results. They "lawyer up" and suddenly I'm involved in something I didn't intend to be involved with.

*** Just because her experience makes her fluent in medical terms and procedures doesn't necessarily give her any special powers in MY case...

*** There are also a lot of others here who have a lot of knowledge that they share. Over time (especially if their issues are similar to mine), you can find all sorts of helpful folks.

*** Of course, MrsD may respond to your inquiry as she wishes -- but I would understand if she declined to be more specific. OTOH, she may respond differently if you asked her a question in a private email not likely to be left hanging in the ether to be picked up months later and misunderstood.

*** Welcome to the board.


Cowboy


PS: I am finding some probable relief from Lyrica -- but I am currently trying a run with 600 mg a day. Fearful for the future of my teeth, but.......?

I have learned alot about PN because I started having IT when I was 30.... I am now over 60! I live with chronic pain daily, and so far I have avoided RX medications for my pain, except for a little tramadol on very bad days. I get by with Aleve and Tylenol. I use topical products often, with quite a bit of success.

And my training, yes, enables me to find the best articles, the most useful studies and interpret them. I have extensive experience with supplements, less so with herbs.

I am also a creative person and also an artist, and these traits give me the incentive to think "outside the box".

I have been on the net helping people for a decade now. I will always give links to what I find useful, so you can learn and pass the information on to your doctor (many of whom, need it) or other people you may know. Many of my links are medical sites in fact!
( as an aside... yesterday I was relaxing in front of TV and there was a rerun of House going... House had his apprentice scrolling thru PubMed...a very familiar place to me--There was a screen shot even! I just wish doctors took advantage of that site more for THEIR patients, so I wouldn't have to
do it here instead).

I search the net almost every day. There is much to learn, if you know where to look and trust.

Hi MrsD,

Thanks for the reply. Ref SD, my AP protocol is 100mg minocin twice daily and 1200mg clinamycin IV's for 5 days every month. I see one of the 3 expert AP docs in the Country with lots of experience curing folks with autoimmunes. The concept of low dose antibiotics has been around since the late 70's, but this is not an established American College of Rheumatology protocol. Therefore, numerous folks do terribly on the existing harsh drug protocols, and in the case of SD, many die. On the other hand, the prognosis is very good for those that start AP early before permanent damage occurs. I am a good example of this, as well as many others on AP.

Ref Raynauds, 95% of all SD folks have Raynauds, and so do I. AP does not seem to do away with the Raynauds, but it is typically fairly manageable. Many male and female SD folks take Viagra (also marketed as Ravatio) for their Raynauds. It is interesting that I have noticed that my PN is improved after taking 50mg Viagra twice daily (as Rx'd for me for PN and Raynauds and to keep PAH at bay). Obviously my SD effects the blood flow to my nerves. I haven't followed through with this Rx very well because the drug may also cause my legs to retain fluid (I'm still experimenting a bit).

Ref GERD, you are right that many SD folks suffer in the GI area as well, to include GERD and esophagus issues. And yes, many take PPIs like you mentioned. I have been on PPI's also, but primarily as a counter for NSAID use because of a preexisting OA hip problem. I do supplement with B-12 and a lot more, and fortunately my B-12 levels are fine.

I am not here to advertise AP, I am simply answering your questions. I am here to get help and encouragement for my PN. However, for more information on AP, you can take a look at the Road Back Foundation site **
From a distance all this medical stuff can be pretty interesting. However, as anyone reading this knows, we would all rather have good health than know a lot about our medical problems.

P.S. "No one should profit from someone else’s illness"

Randy

Wow.. I'm impressed. I wish I could do that. I am currently taking Tylenol with codeine #4 for pain and it barely helps for pain... I wouldn't get any relief from regular tylenol. Tramadol used to help me (for my back), but when I took it after surgery, it gave me migraines, so my doctor took me off of it. He said that until my body stops losing weight rapidly, he is going to keep me on a narcotic because the non-narcotics were giving me such horrible migraines (it wasn't just tramadol--there were two or three others as well). I tried topical products as well, but they irritated me so much that I couldn't use them--I have extremely sensitive skin. I can't wait until my pain eases up and I can go off of these strong pain medications. :)

To Randy... Thanks for that info. I've seen many rheumatology patients with various inflammatory problems use minocycline.
This drug has anti-inflammatory effects besides its antibiotic actions. Even in low dose, it can help periodontal disease and inflammation, at 35mg twice a day.

But I find the clindiamycin interesting. Good thing you are doing it IV, because it can really tear up the bowels.

You might respond the magnesium + Vit E... this is easy to do and not expensive. Magnesium opens the small blood vessels, and improves circulation.
Also here is some information about drug induced nutrient depletions with your drugs:

Minocycline (and all the tetracycline family) over long treatment times affects these nutrients:
depletes:
magnesium
Vits B1, B2, B3, B6, and B12
Vit K
Calcium
Iron
Inositol
Biotin
and the lactobacillus that live in the bowel

Clindamycin is only listed as affecting the beneficial bacteria in the bowel.

Here is a website with more examples of drug induced nutrient interactions. It is taken from the reference I use as well.
http://www.chiro.org/nutrition/ABSTR...orticosteroids

Many doctors do not follow the research done on these drugs after they have been on the market for a while. So the text is very useful, and I use it to help here for patients on long term therapies that may be causing side effects.
The reference is out of print, now, but there are other books, like The Side Effects Bible, which is written by Dr. Vagnini in more laymen friendly terms.
excerpt here:
http://www.enotalone.com/article/4624.html

You mentioned scleroderma. Can you share your ANA, pattern, and ENA? Has AP changed any of this?

[QUOTE=mrsD;676491]To Randy... Thanks for that info. I've seen many rheumatology patients with various inflammatory problems use minocycline.
This drug has anti-inflammatory effects besides its antibiotic actions. ..........

But I find the clindiamycin interesting. Good thing you are doing it IV, because it can really tear up the bowels.

You might respond the magnesium + Vit E... this is easy to do and not expensive. Magnesium opens the small blood vessels, and improves circulation.

Also here is some information about drug induced nutrient depletions with your drugs:

Minocycline (and all the tetracycline family) over long treatment times affects these nutrients:
depletes:
magnesium
Vits B1, B2, B3, B6, and B12
Vit K
Calcium
Iron
Inositol
Biotin
and the lactobacillus that live in the bowel

---QUOTE]

MrsD,

Thanks for the terrific information and links. I will check out the links.

Since I have not posted enough here, I can not provide links back, but if you email me or send me a personal message through the board, I'll give you the link that provides the medical details about how the AP protocol works and keeps the micoplasma infection bugs at bay, etc..

I do take vit E and vit E with Silenium along with many other sups. I look forward to providing you more details.

Ref Magnesium, you are right about Minocin's effect on Magnesium, I have been taking up to 1000mg Magnesium Citrate and 1200mg Calcium recently. The magnesium stopped the calf cramps I would experience during the Clindy IV's.

Ref AP and it's effect on the bowels, I take tons of probiotics; but you're right, Yeast infections can result if one does not counter properly with the probiotics.

I look forward to investigating Vit K and the others. I take 1 MegaFoods B Complex twice daily currently. I used to take a lot of Vit B1, B6, and B5 seperately. I take 1 sublingual Methyl B-12 (1000McG) daily.

Question: What about Lecithin? Does it help PN? According to a book which was referred to me (and I have not read it), The Immune Restoration Handbook by Konlee and LeBea, the lemon/olive drink (this is pretty well known to AP folks) with Lecithin granules is supposed to rapidly heal neuropathy.

Randy

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.

No, I am not a medical professional; that post was referring to someone else.

Ooops again, so sorry.