SD-induced Neuropathy

[stevewrightfilmmusic]

Hi all,

Posting on behalf of my mother in law, Systemic Sclerosis sufferer. Whilst all of our efforts seem to be helping her to an extent with her SD-related symptoms (still with the prednisone but we’re working on that!!), her absolute main complaint is the peripheral neuropathy she experiences… before in one foot, now in both. It stops her being able to walk, rest, sleep, it’s really the worst symptom of all.

We’ve tried all sorts to solve it – lyrica helped 0 with pain but made her feel otherwise terrible! Gabapentin helped a bit, but made her feel drunk and dizzy, and slowed her digestion right down to the point that she went to the bathroom ONCE in 3 weeks!! She has since stopped, still experiencing withdrawals from it, but thankfully digestion is beginning to improve.

She started LDN almost 3 weeks ago, so we’re keeping fingers crossed that it will improve the pain. She has tried acupuncture with little success, but considering trying again soon. Capsaicin cream onky caused her dxtreme discomfort which didnt leave for a few weeks. Soaking her feet in cold water for 15 mind or so gives her temporary relief, but cold feet aren’t ideal with SD!

So, we’re desperately trying to find things to help. I did a search on the forum and found some very interesting nuggets of info, relating to the whole lemon and olive oil drink. We’re going to start that TODAY! Along with the lecithin (not always easy to find some supplements here in Ecuador, but fingers crossed).

I’ve also read the link between celiac disease and neuropathy, and obviously there are strong links between celiac and SD/AI conditions in general, which obviously brings in to question gluten in the diet (she likes her bread that’s for sure). I’ve also been told that a ketogenic diet can help protect/aid in the repair of nerves..

I was hoping that others may be able to comment on their experience with neuropathy, and what they have done to help the symptoms, in whatever sense that might be. I forgot to mention that we’re soon heading to the States to Dr B in North Carolina, for AP, and whatever other suggestions he will undoubtedly help her overall health.

Thank you everyone!!

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Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Lynne G.SD]

Hi Steve;
I was in that situation years ago and the only thing that helped was ALA(alpha lipoic acid)it took a while to kick in but did work for me.Many South American countries now have legal cannabis but not sure about Ecuador.If you can get some medical oil that has mostly CBD and a little THC that should really help.I grow and make my own oil that works wonders for the boys up the road who work in a lumber yard and have repeatative injuries.Straight CBD does not nearly work as well as an oil that has both.

[Luck20]

The pain I had when my hands and forearms started to harden could be described as neuropathy. Is that the stage shes in? It was horrible.

I would wake many times during the night and run my hands and arms under hot or cold water depending on what was working for me. Ibuprofane couldn’t even touch the pain and muscle relaxers were useless. Finally a dr gave me rx for Trazadone. 50mg, taken before bed. It’s an antidepressant but it let me finally get some decent sleep. It helped with pain and made me sleep better. I went almost 5 months with minimal sleep as the disease progressed rapidly. I was grateful to get it but it was a shame I had to suffer so long to get help!

I’ve had luck with Olive Leaf extract too. My pain is much less and somedays only stiffness.

The good news is as treatment progresses and the skin loosens, the pain should decline. Hopefully this is just the stage shes in and as the disease regresses, she’ll feel better.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[stevewrightfilmmusic]

Thanks for your replies both…

Lynne, we can get hold of therapeutic CBD oil over here, it’s gaining more and more publicity and traction over here, even this week there have been multiple news segments on the TV about it. However as always in this country, you can never be sure 100% what you’re getting, when things aren’t coming from an authorised provider – LDN doesn’t even exist in this country! We had to get a Skype consult with a US doctor, for a friend to then bring it over in suitcase. Not sure what we will do when this supply runs out… so we have been looking in to the CBD, but still not really that possible. We’re hopeful the LDN will help with many things, including the pain, but it’s the neuropathic pain which is causing mosT nuisance for her right now.

Luck20 – it doesn’t appear to be ‘hardening’ of the skin. Very specifically, the pain started down the outside edge of her left foot, sometimes to the little toe. This often also goes round the outer ball of the ankle, and up the outer side of her calf (ie the path of the sural nerve). But the pain almost always concentrated on the outer edge of foot. The skin in this area of the foot (and top of foot) is very tight, hard to pinch, but wouldn’t describe it as thick/hard. If anything it seems very thin and frail.

Interestingly, her big toe on this foot is arched right back on itself, we wonder whether this extremely awkward position is putting strain on the nerves somehow (despite the pain not being concentrated here). Similarly hoping the AP may help reverse the distorted tie a little and relieve some pressure.. time will tell!

She had EMG on both legs which came back positive for neuropathy. Since quitting the Gabapentin, the other foot is starting to have similar symptoms to the other. The side effects are just too much for her, despite the agony. She also takes amitryptiline at night for sleep/pain. Is trazadone an alternative to amitryptiline?

Just gave her her first whole lemon drink, little concerned as she suffers from GERD. However we’ve also been told/read that GERD can actually be a lack of acid in stomach, causing sphincter to open and up comes acid, so hoping this won’t aggravate those symptoms.

This disease is like playing buckaroo – everything is so in the balance, we’re afraid to try one thing and upset something else! But she is really struggling so we just have to keep trying what everyone kindly suggests and hope her body responds to something!

Thanks as always for your time and advice. What incredible places these forums are.

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Pinkmoth]

hi Steve,
very sorry to hear of your mother’s suffering.
hopefully, and I think very likely, the LDn/AP combo will kick in and lease the pain. I haven’t read accounts that show that LDN helps people with SD with much BESIDES pain reduction. and AP should help start to resolve the whole underlying situation.

GERD; I actually agree that it’s low stomach acid production that is the problem. i know that for me, I don’t produce almost any stomach acid. it is a major problem for my digestion. I actually take hydrochloric acid capsules with my food. this really helps my digestion and reduces food reactivity.

your mom would probably benefit from trying an elimination diet. at minimum cutting bread for a few days and seeing if there’s a difference in symptoms. my symptoms are always aggravated by different foods and different foods do different things…tomatoes make my “burning skin” neuropathy increase while corn makes my palms tighten. I think it’s all due to a highly permeable gut that comes with this disease..

so some attention to diet may give your mom some control over symptoms while you wait for LDN/AP to get going.

best of luck

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[stevewrightfilmmusic]

Hi Pinkmoth,

Thanks for your reply – to be honest, the only reason we initially pursued LDN was for the pain relief, but we’re hoping it may help with her hypothyroidism, and enable her to quit the prednisone too…

Second full day of lemon juice olive oil drink, perhaps a coincidence but she’s had two great days! The pain unfortunately comes with vengeance in the night, which is the worst, and I gathere very common too.

Elimination diet!! We have been telling her for months that she should try quitting her biggest love, bread, just for a week, to see if she feels better. But she literally does not believe that bread (or any food) could be causing this kind of pain. Her doctors are hopeless with regards to anything outside of prescribing her a pill and sending her on her way, and unless she hears it from their mouths, she doesn’t believe. We continue to try and convince her!

thanks again for your support everyone

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Linda L]

A very interesting thing about LDN is that it helps with allergies and we all are allergic to something, even if we don’t know about it. It would be good if she starts observing after what food her foot is more stiff or sore. Also I am quite sure that she should limit sugar and sweets to minimum. What time does she take LDN and what time she goes to sleep?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[stevewrightfilmmusic]

hi Linda,

Thanks for replying. One thing we have managed to encourage her to stop is all sugars. The only sugar intake she has is from fresh fruit. nothing is added sugars. We have noticed that when she does ‘cheat’, she flares up with inflammation.

She takes LDN at 9Pm, and turning off TV to sleep at roughly 11/11.30. problem is for the last week or so, she is still awake at 3 am… not because of insomnia, she feels exhausted and does drift in and out, but the pain us what keeps her from sleeping/properly resting.

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

[Linda L]

I would suggest she takes LDN earlier and with food about 6-7 pm. I always wake up at night for about an hour and then sleep again. One doctor who claims he has treated his son of RA told me to take it at 6 pm How much does she take? Detox and probiotics are extremely important for her because she takes medications = chemical toxins. Now when her neuropathy is bad massages to her feet will help her to walk.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[stevewrightfilmmusic]

Interesting – her LDN Doctor (‘LDN direct’ based in the States, Dr. Z) said to take it an hour before bed time, roughly. Why did this other doctor suggest earlier?

She is only in her third week so it’s still early days. We’ve been working up from 1.5mg, now she is at 3mg. We’re hanging around at this dose for a few weeks to see what happens, wary of rushing the increase of dosage and missing her optimal dose.

Completely agree with you regarding the toxins. We’re convinced she has leaky gut, which has led to a number of problems and continues the problems. Ive seen That many of you have discussed Candida/yeast problems, relating to leaky gut, also the Lyme connection and possible celiac involvement too (she doesn’t have the symptoms of celiac, but perhaps gluten sensitivity?) she has never been tested for any of the above, but hoping that Dr B in North Carolina will run these kinds of tests before beginning the AP when were able to travel to see him.

However her biggest problem is her stubbornness! We really want her to try eliminating various foods one at a time to see how it helps, but she still refuses. I keep reading how leaky gut causes toxins to get in, causing inflammation. Similarly that gluten sensitivity means eating bread = inflammation. I’ve also read that having celiac disease can actually encourage neuropathy! AND! A study demonstrating a relationship between hyperthyroidism and neuropathy… https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5414436/
Funnily enough, her Hypothyroidism and osteoarthritis began roughly a year and a half after starting prednisone, and neuropathy a further year later.. I’ve read connections between all of this too.

ANYWAY don’t mean to go off topic! Pain particularly bad right now (11.30pm) – wife and I have been alternating massaging her feet legs and bum for the past few hours. Helps a bit but unfortunately we aren’t machines and can’t keep going all night 🙁

Thank you again, we keep going!

---

Here for my Mother In Law.

Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.

Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.

Current Supps:
Vitamin B-complex, C, D, E. Potassium Glucona

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