Neuropathy and Vascular Problems – Something That May Help

[Randy]

Hi Everyone,

I don’t know how common Peripheral Neuropathy (PN) is as a complication to SD, however, I do know that there are a number of us SD folks that now have PN. It would be nice to better understand why my SD has caused my PN (by the way, I am not diabetic, which is one of the main causes of PN), but that is not the point of this post.

Besides Lyrica and Neurantin that can help with the symptoms, in my case, I have been finding that vasodilators (e.g. sildenafil and tadalafil) do help, and most recently I have found that CoQ10 (100 mg twice daily) has been very helpful. No, my PN has not gone away, but there is definite improvement directly correlated to these meds. I have also noticed my fingernails are beginning to look more normal and my cuticles are returning to normal health.

Without addressing Raynauds and fingertip ulcers, which is one of the reasons (along with PAH) for talking the vasodilators in the first place, a correlation begins to appear between SD vascular problems and PN. But the good news is that in my case and in the linked John Hopkins study below (provided by the Neuropathy Association), it does appear that damaged nerves can be allowed to heal with improved blood vessels and improved circulation. This helps me understand why I am noticing easing of my PN symptoms with vasodilator and CoQ10 use.

http://gazette.jhu.edu/2011/07/05/to-fix-diabetic-nerve-damage-treat-vessels-and-support-cells/

I hope this helps anyone out there who suffers with PN.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[torontogirl]

Thank you for this post, Randy! I also have peripheral neuropathy and scleroderma. My neuropathic symptoms started up at EXACTLY the same time as my Raynaud’s and GERD. I also started to get migraines at the same time. The neuropathic symptoms were tingling, burning, and other strange sensation in various parts of my body, and I also developed autonomic neuropathy which gave me episodes where I could not regulate my temperature or blood pressure (scary!) Despite the fact that it all started at the same time, my neurologist (who I saw initially because it seemed that my mystery illness was related to the nervous system) thought that the Raynaud’s and GERD were irrelevant. He did run lots of blood work though and a positive ANA and positive Rheumatoid Factor test sent me to a rheumatologist. He was very interested in the GERD and Raynaud’s and ANA and RF, but thought that the neuropathy was unrelated. He kept saying that it didn’t fit the picture of a connective tissue disease. (I have talked to several other people who have pretty serious PN along with scleroderma whose rheumatologists also say is unrelated.)

The really interesting thing was that once I started taking medication for my Raynaud’s, the neuropathy disappeared! It is not 100% gone, but I now only rarely get a bit of a tingling in a small area. All fall and winter last year I was getting widespread tingling and burning on and off all day long. The autonomic neuropathy is also gone, which is amazing because that was very difficult to live with. I take Amlodipine for Raynaud’s. The combination of that medication and the warmer weather has made a huge difference to both my Raynaud’s and PN. I mentioned this coincidence to my rheumatologist only to be told that my PN had spontaneously improved. Obviously I don’t believe that. It’s nice to hear others who have a similar experience.

I’ve also been told that Alpha Lipoic Acid can be very beneficial in treating PN.

[Randy]

@torontogirl wrote:

I’ve also been told that Alpha Lipoic Acid can be very beneficial in treating PN.

I gave Alph Lipoic Acid a very good try, byt it had no effect except giving me a very acidy stomach! I had very early on been on 25 mg nifedipine, another calcium channel blocker like Amlodipine, but I felt it made my legs retain water.

I’m delighted that your PN is well under control.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Maz]

@Randy wrote:

I don’t know how common Peripheral Neuropathy (PN) is as a complication to SD, however, I do know that there are a number of us SD folks that now have PN. It would be nice to better understand why my SD has caused my PN (by the way, I am not diabetic, which is one of the main causes of PN), but that is not the point of this post.

Without addressing Raynauds and fingertip ulcers, which is one of the reasons (along with PAH) for talking the vasodilators in the first place, a correlation begins to appear between SD vascular problems and PN. But the good news is that in my case and in the linked John Hopkins study below (provided by the Neuropathy Association), it does appear that damaged nerves can be allowed to heal with improved blood vessels and improved circulation. This helps me understand why I am noticing easing of my PN symptoms with vasodilator and CoQ10 use.

Hi Randy,

I’ve been doing some research lately on Glutathione, the body’s master detoxifier and fell upon a YouTube of a woman who suffered from idiopathic neuropathy. She had been receiving IV glutathione pushes and her neuropathy had completely disappeared. Since reading your post, I have also discovered that patients with neuro diseases, like Parkinson’s and Alzheimer’s have had tremendous success with IV glutathione. My understanding is that oxidative stress (from inflammation or caused through environmental and pathogen toxins) in the body is thought to be a prime cause of neuropathy. Course, the mechanism in SD may well be very different, as you describe above.

However, I just thought it worth mentioning this treatment to you for your possible interest and further research. I’d been contemplating trying IV glutathione for a while and it was only when I had to switch docs that the new doc offered this treatment as an adjunctive, so thought I’d give it a go. It was really unbelievable – the effects. I thought I’d been doing so incredibly well, anyway, but after this shot, I realized I had settled for a new “normal!” The day after the IV glutathione push, I felt absolutely “normal” – and, 30 years old again! Literally, I felt like I dropped twenty years overnight. I cleaned the pool, cleaned the house ready for painters, packed my bags for a weekend trip up to Canada and then drove my hubby and I 2/3rds of the way up to Toronto (7 hours driving and hubby did final 2 or 3 hours). I could not believe the energy I had and it was so enlightening to actually experience what I could be again if I placed more focus and attention on detoxification to reduce the oxidative stress that the past 4 or 5 years had placed on my body.

If I find any better links, I’ll post them here, but this is a start:

http://www.glutathionediseasecure.com/neuropathy-pain-treatment.html

“Alternative Pain Management

The bottom line, boosting glutathione can have a beneficial effect on pain management and secondarily improve overall health. This and other treatments mentioned here may provide an alternative neuropathy pain treatment that will eliminate the deleterious effects of traditional medication.”

http://www.ncbi.nlm.nih.gov/pubmed/17176168

Peripheral neuropathy: pathogenic mechanisms and alternative therapies.

http://edrv.endojournals.org/content/25/4/612.full

Alpha Lipoic Acid works as an anti-oxidant, as well, so this probably explains why it also works so well in this way.

Very interestingly, NAC or N-acetylcysteine, is a precursor to glutatione, manufactured in the liver. Many with lung fibrosis use NAC to reverse lung fibrosis (which can occur with many rheumatic diseases, including SD). So I find it fascinating that the very same master detoxifying agent is also having efficacy in helping to reverse neuropathy! Btw, for those with lung fibrosis, glutathione can also be taken in an inhaled, nebulizer form. It’s also used in a skin patch and suppository form.

http://www.youtube.com/watch?v=FZSa_q6rpBw

My doc charged $50 for an IV glutathione push, which only takes a few mins, slowly injected. The nurse did my blood draw and the doc used the same line to do the glutathione push.

Here is a YouTube of Dr. Mark Hyman speaking about the benefits of Glutathione:

http://www.youtube.com/watch?v=Eh2PYQBICWs&feature=related

Of course, not saying everyone should rush and do this – just offering my experience and some info for possible interest and further research. 😉

[torontogirl]

Well, that is extremely interesting. I have been taking NAC on the advice of a naturopath for several months. The hope was that increasing the amount of glutathione my body was making would protect my lungs from oxidative stress and therefore fibrosis. I did research before taking it and discovered that some other SD patients with lung fibrosis were prescribed NAC by their pulmonologists. I don’t have any lung damage at this point and will do whatever I can to avoid it. My naturopath also suggested nebulized glutathione, but I haven’t decided on that yet. I wasn’t aware of the injected version.

I started taking NAC back in April or May just after starting Amlodipine, so now I’m not sure what to attribute my improvements to! Maybe a combination of things…

[mlouise]

I have been reading about NAC and hearing about it here on the roadback several times in the last few months. I do not take it, but I do have lung damage from fibrosis and most times am very short of breath, especiallly while talking. Are there any gut issues that I should know about before I take it? I finally have my stomach and intestines under control with minimal acid reflux. Louise

[Maz]

@mlouise wrote:

Are there any gut issues that I should know about before I take it? I finally have my stomach and intestines under control with minimal acid reflux.

Hi Louise,

It’s always a good idea to check with one’s doc prior to starting any new supplement to check for drug-interactions and side-effects that might worsen existing health issues. There is quite a bit of info on the web about side-effects of NAC and it’s worth checking around to get informed prior to consulting one’s doc so pertinent (to one’s own health) questions can be asked. 😉

Can only share that my personal experience has been good and that I took a slow approach to beginning NAC, as I had read that it could induce herxing. My father’s pulmonologist had nothing to offer him for his pulmonary fibrosis (50% lung capacity), but when my Dad asked about NAC, he kind of whispered in a conspiratorial voice, “Yes, you could try that,” which was strange. Strange, because NAC is not really a big secret and is commonly used for cystic fibrosis patients.

The following website promotes glutathione as a “cure,” which always gives rise for wonder, but there are some interesting points about interactions and side-effects that can be researched further if anything is a concern:

http://www.glutathionediseasecure.com/acetylcysteine-side-effects.html

[torontogirl]

@mlouise wrote:

I have been reading about NAC and hearing about it here on the roadback several times in the last few months. I do not take it, but I do have lung damage from fibrosis and most times am very short of breath, especiallly while talking. Are there any gut issues that I should know about before I take it? I finally have my stomach and intestines under control with minimal acid reflux. Louise

Louise, I also have GERD and have not found that NAC impacted it in any way. I don’t believe it affects the stomach or digestion, though you should of course ask your doctor (preferably the one who you see about your lung issues whether that’s a pulmonologist or scleroderma specialist) and read through the list of potential side effects before starting. My naturopath recommended it and I asked another forum of people with scleroderma about their experiences with it. I was surprised to hear that many of the people with significant lung fibrosis had been prescribed NAC by their pulmonologists. It can be given by IV as well. I take capsules which can be purchased at health food stores. I take 500 mg twice a day. Good luck!

[KathyF]

My husband takes Neurantin for his neuropathy. It has helped him quite a bit but he still suffers some pain. He also started taking CoQ10 recently and has noted some improvements. He doesn’t take a vasodilator though. I’ll have to send him a link to this post and have him talk with his doctor.

[Krys]

Hi,
Prior to AP, Gingko Biloba was definitely helpful with my neuropathy. It was still present in the morning, sometimes throughout the day (there was a definite connection to the mistakes in the diet for me) but whenever I ran out of Gingko, it stayed all day long. Since AP (Oct. 2010), I added (still taking Gingko) ALA, NAC, CoQ10 (3xd) and my neuropathy greatly improved, but was still slightly there and continued staying slightly there. My LLMD was worried about prolonged lack of progress (I did ran out of Gingko in May and never restarted it) and advised me to take ALA 3xd. My neuropathy completely resolved!!! I did take glutathione push 8 times (Rocephin + Gluthatione IVs) at the very same time I upped my ALA, so I can’t say definitely it was just ALA that did the work. But I am happy to say: there is no numbness since that time, no numbness in fingertips, feet, face, none at all!!! The very slight ringing in my ears that kept persisting, is also gone.
Warm wishes, Krys

[Randy]

@Krys wrote:

I did take glutathione push 8 times (Rocephin + Gluthatione IVs) at the very same time I upped my ALA, so I can’t say definitely it was just ALA that did the work. But I am happy to say: there is no numbness since that time, no numbness in fingertips, feet, face, none at all!!! The very slight ringing in my ears that kept persisting, is also gone.
Warm wishes, Krys

Congrats on your PN going away. That is awsome!

ALA did nothing for me except cause my stomach to feel very acidy; and I did give it a real go. So, maybe the glutathione pushes did the trick!

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[lynnie_sydney]

Randy, all
My AP doc recommends taking Activated B6 which has a variety of functions, including potentiating magnesium absorption and fighting biofilms. Deficiencies in B6 show up in a variety of ways – one of which is peripheral neuropathy. See Wikepedia info on B6 deficiencies:
http://en.wikipedia.org/wiki/Vitamin_B6
Also this site (below) explains benefits of taking Activated B6 and how best to take it (e.g. with other B’s)
http://www.nutritional-supplements-health-guide.com/vitamin-b6-benefits.html
Might be worth trying for peripheral neuropathy. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[mlouise]

Kyrs,
did your LLMD order the IVs? I got the NAC today and am going to start taking it. I have great difficulties with Raynaud’s and numbness in fingers, whole hands, toes, even my nose and the skin at the back of my head are involved at times. Right now in August we are in a heat wave here in PA so it is not so bad, but within a month I will be under attack again. Thanks for the help and advice I am going to try the NAC for now and add others as I go. I am particularly interested in the IVs since my stomach and acid reflux is a serious problem as well. Louise

[Maz]

@Randy wrote:

@Krys wrote:

So, maybe the glutathione pushes did the trick!

Hi Randy and MLouise,

I came across Dr.P’s YouTube before/after of a Parkinson’s patient who has just had an IV glutathione push:

http://www.youtube.com/watch?v=uQRCpdcGwIU

I was really stunned by this remarkable result – not touted as a “cure,” but temporarily palliative and immune supportive (in terms of helping body clear toxins).

There is also a product derived from undernatured bovine whey protein, called Immunocal, that I’m researching right now for my Dad, which is an oral glutathione supp that comes in sachets:

http://www.youtube.com/watch?v=EdnaBL5bSmU&playnext=1&list=PL35340EBA2A681B5A

A Friend has often shared here about toxicity and pain syndromes a lot in the past and it makes very good sense that chronically ill people have difficulties eliminating toxic wastes from their body. These become what have been dubbed “neuro-toxins.” Assisting the body to eliminate neuro-toxins helps to relieve this burden on the body.

The second link above is clearly a series of ads, pushing Immunocal, but it is a product made from undenatured bovine whey protein. On Drugs.com it says the only contraindications are dairy allergy/intolerance and anyone on a protein-restricted diet. Also, there is a warning about anyone undergoing immune-suppressive therapy:

http://www.drugs.com/drp/immunocal-powder-sachets.html

“Immunocal is a bovine whey protein isolate specially prepared so as to provide a rich source of bioavailable cysteine.”

[Krys]

@mlouise wrote:

Kyrs,
did your LLMD order the IVs? ….I am particularly interested in the IVs since my stomach and acid reflux is a serious problem as well. Louise

Hi Louise,
I asked my LLMD for IVs as I wanted to speed things up a bit (my progress slowed down for many months due to Candida) and he agreed and chose Rocephin. Anticipating detox problems I asked if I could have it combined with glutathione. It worked wonders. After the first one I had a minor herx for just 3 days and felt just fabulous. A week later I had 7 more and felt all recovered (well, almost: still exhausted, still big food intolerances) for next 10 days. And then either herx due to Rocephin started or cyst busters that I started taking again broke the spell of enchantment… But for me the main IV ingredient was Rocephin, glutathione was added to help with my impaired detoxification pathways. So as I credit the final disappearance of neuropathy to probably both glutathione and increasing ALA to 3xday, my crashing down is most probably due to reaction to Rocephin and possibly cyst busting. I wish there was a way to keep those cysts so locked up they would never interfere with anything, never “wake up”, never need to be busted. I never did well on busting….Each time I do it, I feel horrible.
Sorry for introducing venting to this wonderful thread!
@lynnie_sydney wrote:

My AP doc recommends taking Activated B6 which has a variety of functions, including potentiating magnesium absorption and fighting biofilms. Deficiencies in B6 show up in a variety of ways – one of which is peripheral neuropathy.

Lynnie, I’ve never heard of activated B6! But it sounds fascinating! I know that vit.B injections (all vit. Bs combined) were excellent for neuropathy and a great vitality booster among other things. Unfortunately they are not accessible in this form in US. And for me the tablets and liquid just do not do the trick. But if the activated form works, well, then there is a great solution available to us!!! Yeepee!!! Thanks!

Maz, you may be right that it was glutathione that did the work. I’ll never know for sure so I credit both that and increased ALA. I’ll soon watch the video: sounds great. I was disappointed, though, that it was not my Dr. P.! I thought I would get a real double treat from this video!!! (Imagine a laughing smiley now: roll-laugh-roll-laugh).
Warm wishes, Krys

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