yes I am here....they are in stage 2 of clinical trials at harvard deaconess in boston using sodium chloride+ infusion. My issue is balance and gait

Hello - I feel for you. I sadly left my career in January. I had not been there long enough to qualify for disability, but it was obvious I needed to take time for my health. I've had a crazy journey since 2018, but I hit the doctor jackpot in February and March. One of my many diagnoses is Small Fiber Neuropathy with TS-HDS. I hope to start a 3-day/1hr per day Cortisone IVIG in December and may pulse this on a monthly basis after, depending on my reaction. I'm allergic to seemingly everything, including botox. I have fibro pain, neuropathy, exhaustion, headaches, brain fog, and so many more issues are ongoing. I actually have repeat allergy testing tomorrow (already have Alpha Galactose (allergy to red meat) and angioedema). I am in the process of completing SS disability paperwork. I hope my collective issues will qualify. I am 53 and chose a career over children, so this is huge - I get it. Sending positive vibes your way.

Hope I can help some people out here, as the past 16 months since this ultimately landed me in the ER for a week, I have been on a results journey to say the least. VERY Long response but worth if for many.

I ended up in the ER 16 months ago because after dealing with losing feeling / tingliness of the skin, at the same time as throbbing and burning pain in the muscles and bones in my arms and legs, one Sunday to spread to the left side of my face, jaw and my neck. Passed off the previous years of these feelings as a pinched nerve or something but went into ER because thought it might be a stroke. In 2013 my pelvic Floor went out and in spasm. Said it was Prudential Nerve entrapment but really think it is more autoimmune because pelvic floor did not settle down to normal until recent. I am still taking the lowest dose Flexeril at night to calm down nerves and muscles.

After checking me thoroughly, CT-SCANS, MRIs, they discharged me from ER with inconclusive maybes of Post Virus attacking my left facial nerve, maybe Bell's Palsy, maybe shingles on the inside, maybe the early stages of delayed MS. Gave me Valtrex and Prednisone in hospital. Only the Prednisone provided some small relief. If not better, then come and see them in 4 weeks for a spinal tap.

In the meantime, a friend of a friend got me in with the top Neurologist in Colorado within days. They ran a few additional tests and determined that my Vitamin B6 was 400% high. Did additional research anywhere I could find info as they told me to remove certain B-6 rich foods from diet to correct it but those foods were not in my diet to start with. Had to be another reason.

Eventually came across a study that was tied to negative aspects of having MTHFR genes activate. Those study results focused on the issues being inability to process synthetic vitamins and minerals, inability to absorb magnesium, low testosterone, issues with sperm, DNA turning on and off, gall bladder quitting and requiring removal (in 2005). It was like: check, check, check as issues I have had all my life. I drank a small 8 oz Red Bull every morning (highest synthetic B-6 product on the FDA tested market today) for 8 years. Have grounded my teeth to nubs (signs of low magnesium), was on testosterone replacement shots for 5 years a number of years ago due to testosterone being in double digits and still was lucky to get it to 100 so in retrospect was misdiagnosed. It took my wife and I, 6.5 years to get pregnant and we needed IUI to do it AFTER I changed my diet and what I am describing below. 3 natural conception miscarriages between our two lovely kids and IUI allowed us to have the second. Thankfully our kids have been extremely healthy.

Actual medical DNA testing (NOT 23 and me stuff) showed I have both MTHFR genes activated. That explained a lot as described above.

As we did not know if this was still a virus after ER, a good friend suggested I totally change my diet to starve the virus, so no gluten, no dairy, no soy, no corn, no eggs, no lectins, no refined sugars, all organic fruits/vegetables, USDA organic meats, poultries, pork or wild caught proteins like fish, seafood, etc. Basically, an extremely clean diet. It was hard but took 8 weeks and then all mental and physical fatigue lifted. Dropped 35 lbs from 212 to 177 lbs. My body response reactions were the best they have been since I played International Competitive Hockey 27 years ago. BUT I was still in tremendous pain and not sleeping. I kept the diet and am still on it today.

After those 8 weeks on diet, we rechecked my Vitamin B6 and it was 75% mark inside of normal. Fixed that part. Since still had the neuropathy issues, they ordered a spinal tap and nerve conductivity and EMG study to confirm if this was MS or not. I passed the EMG / nerve conductivity studies with flying colors (almost back to professional athlete responses) but Spinal Tap revealed CSF ratios to serum way, way off and CSF proteins 350% high, CSF Albumin 300% high and CSF IGG levels 250% high.

Results sent me to UCHealth Anschutz Center MS and Rare Diseases hospital here in Colorado. There every test under the sun was run for blood, stools, etc., etc. They checked for MS, they checked for Lupus, GBS, CIDP, Lyme, this and that. Eshopolohy panels to Mayo. They tested everything 8 ways from Sunday as I must have given 120 vitals of blood over time. Rechecked the Spinal Tap results with a second test and it was worse than the first. Proteins were now 450% high so getting worse. However still no O-Bands counts for MS but the results showed chronic systemic inflammation in my CNS but not my blood serum. This was not MS or Lupus or anything like that. Something was causing major inflammation in my body. They determined it had to be autoimmune. Presence of Albumin, levels in my CSF, etc. in my CSF showed moderate to serious breakdown of the blood brain barrier.

During this time, I was not sleeping, total insomnia with maybe 2 hours a sleep a night. Shoulders hurt so bad I had to sleep in a chair in my daughters’ room at night as I could not lay on my sides. I was getting migraines but only the parental region of my brain and only after eating certain foods. So put me on lowest dose of Ambien and was then sleeping at least 7 hours a night. I still need it every night to sleep but still the lowest dosage. I am only on the Flexeril and Ambien for medications.

I had to exercise even just walking. I was also pushing myself to walk and lightly jog/hike as when we thought it was MS, I had to get moving to help combat it. I pushed myself to literally tears and crying while doing it because it hurt so much but I was not going to let whatever this is beat me. The first mile almost killed me as my legs and arms felt so, so heavy and disconnected from my body. I eventually worked up to 5-7 mile hikes each day behind the house. Mind you this is all happening as I started a new engineering business ramping up to 15+ employees, tons of stress along with little kids in the house with my wife. It was just stressful times.

Anyway, being autoimmune, they checked for Celiac. Blood test showed nothing, Endoscope biopsies showed nothing as I had not eaten any Gluten for 6 months. However upper intestine endoscope visuals showed all my villa were severely inflamed and basically passing undigested food through to my lower intestine. Sure, sign of Celiac. I had loose stools for years after the removal of my Gall Bladder. These were painful and sometimes had yellow foamy diarrhea. It was horrible. I had major issues after dairy as well. Migraines with soy in diet. After the change in diet, haven't had bowel issues since the diet change.

So the UC Health Anshutz MS doctors, thought maybe this was Small Fiber Polyneuropathy disease since it was not CIDP as that was ruled out even in light of the horrific spinal taps. They tested and my IGM versus TS-HDS Binding Antibodies were at 27,000. Extremely high. They did the biopsies and sent them to Corinthian Labs. My fibers were around 300% low on foot, and ankle but barely normal on hip. I was diagnosed with SPFN disease.

Problem is there is really no cure. Great positive for disease but no Bonafede treatments. Only potentials were IVIG, IV Methyl Prednisolone or Plasma-parenthesis. We tried to get IVIG but insurance shot it down so we tried IV cortico-steroids and insurance approved them.

I am very, very, very lucky in that my MS and Rare Disease doctors along with the Neuromuscular doctors along with Neurologists along with Brain and Spine docs across the country convened on a conference call together and they came up with a theory which has at least proven itself thus far. They also separately convened with some of the SFPN docs like Pasternak and others who confirmed that there were no CSF results for the people with SFPN so no direct connections.

Theory was that my Celiac was creating a situation where undigested food was pushing into the lower intestines, there it would leaky gut the synthetic Vitamins and Minerals into my blood along with the protein enzymes from the Gluten, Cows Milk and Soy which went directly to the brain. MTHFR played a major role in this aspect for the perfect storm. Here my bodies reaction was to overproduce the IGM vs TS-HDS Binding Antibodies to all of this. They then believe it bound to these harmful (to me) proteins in my blood to get across the blood brain barrier to be trapped in my CSF in my CNS. I know doctors that say this is not possible but in how I feel now, this theory has proven itself out. I had picked up the first few dominoes of this mess in no more synthetic vitamins and minerals so all raw plant based supplements and food into my body. I removed the gluten and cow's milk and soy so my GI could heal (which they said count take 2 to 3 years as bad as the physical damage was) and I was now sleeping (REM sleep to allow the body to repair itself) and getting some exercise and destressing. BUT I was still having bad neuropathy pain in arms, legs, neck and lower face at that time. It was now on both sides not just the left side.

Again the theory they came up with was if we could get the inflammation under control, maybe the body would realize it does not need to overproduce these harmful antibodies anymore in light of not having the diet I had before. So we embarked on IV Methyl Prednisolone to reduce inflammation, immune system and auto-immune response. It was a bit hard in the final cycles but it really did the trick. We did 5 cycles of 5 consecutive days of 1,000 mg of IV-Solu-Medrol. One week cycle then 2 to 3 weeks off (cold turkey no taper), then another cycle. Took 4 months but by the end, 90% of all neuropathy was removed. They retested me 1 month after the last cycle and IGM vs TS-HDS Binding Antibodies were lowered to 8,000 and in upper normal range. For the most part the neuropathy has stayed away but does flare up every now and then. It is tied to if I accidentally ingest Gluten, Dairy or Soy, or really anything I do that ads to inflammation. If I accidentally ingest , it comes on within 1/2 hr of ingestion and I lose feeling in my left foot completely and arms, legs and lower jaw do the same as before with neuropathy but not as intense. It goes away completely after a couple of days. We are going to retest Antibodies near XMAS to see if they are still low or was that retest reading just a result of the IV Steroids' slowing down the immune and auto-immune response. Either way, I am in a much, much better place now then where I was.

After neuropathy was under control, I started to feel pain in my neck and MRIs show moderate to serious stenosis in my C5/C6. I started to use a Saunders Cervical traction device I bought off of EBAY and after a few months, the pain in my neck has improved dramatically. My Pelvic floor spasms and inner bowels spasms, have subsided again 90%. I have also started a plant based USDA Organic pre-biotic and probiotic cycle, raw plant based digestive enzymes, magnesium powder at night, a few supplements to fill in gaps from my raw plant based multi-vitamin. Fish oils, etc.

While not 100%, it is the best overall I have felt in 25 years. I feel like I am healing more and more each week despite the odd flares that set me back temporarily. Now at times I get spasms in my pecs, calves, stomach which are not in the muscle, not a bone issue and not on surface. They cause lumps to appear but then after exercising go away. Almost like Fascia spasms as crazy as that sounds. Going to try some fascia release of Rolfing to see if it helps and some AIS stretching as I am sure some nerves have been shrunk while others elongated as posture, etc. was distorted over time.

In the end, I will say this, after 1 year, my blood work drastically changed. I fought aspects my whole life from the levels a year ago. High cholesterol, 250+. It has dropped to 161. Triglycerides were 311, dropped to 120, LDL, from 165 to 109, HDL unfortunately dropped from 38 to 33 (need to exercise more and lose a few more lbs) SGPT from 110 to 33, Testosterone from 110 up to 301 (highest it has ever tested at). My body is healing.

Sorry for the long write up but if this helps one person, then it is worth it. I do believe it started with the autoimmune Celiac as the main factor that put me where I was at. From there it dominoed and dominoed. I am healing now and will forever be changed. It is all about controlling and reducing inflammation now. I am even considering removing meats and pork and poultry as I just feel better eating Organic Plant based. Almost a vegan diet but I not about the cause or political stances. I just feel better eating this way.
I will let you all know how the rest of the tests go by year end. I my still have to do some more IV Methyl Prednisolone but maybe that is once a quarter now. Either way, it is working. In my case, it was everything and not just the drug itself. Goes without saying I drink a ton of water to filter all this through the system too.

Hope it helps. I am considering writing a book if it helps people. It is pretty miraculous the entire experience and feel so blessed it has appeared to come through okay on the other end of this journey.

I contacted someone about small fiber neuropathy with TS-HDS (20,000) IVIG trial in Boston, but it was first run, didnÂ’t cover the 8-9 travel visits from NC and 50% chance of placebo. I have additional idiopathic neuropathy (etc.) and autoimmune issues. Lots of pain, fatigue, numbness, ice cold knife-like pain.

Meanwhile, IÂ’d like to hear your pros & cons for the 750 mg methyl prednisone @ 1 hr X 3 Days then do this monthly if it helps. Did you have downtime? Worries about getting sick, hyper, etc. My local RA has reservations of complying with Duke neurologistÂ’s request due to adverse reactions of other patients. Thanks in advance.

I was just diagnosed with this ts-hds antibody and polyneuropathy with small fiber. I also am inpatient at Aunshutz right now. I would love to talk to you since this is such a rare thing to have. I'm still in the suffering stage, but your post gives me hope! I am new to this site and not even sure you can see this but I hope you can. Any info. would be great! Thank you

I am literally dumbfounded that you walked into the ER and they started looking for something. I have been fighting 7 years actively (begging and pleading for help). Been told I am every type of mental health patient imaginable. Been to ER 8 times just in last three years, urgent care 25 times last 3 years, I have seen like 5 neurologists, 4 rheumatologists, 4 gastro, 3 vascular docs....the list goes on. I know I had this at least ten years ago.

It has been 9 months since my diagnosis and I am still untreated. Tried steroids and azathioprine and now I am worse than before. IVIG won't go through (denied 3 times).

I am at Stanford in CA. So you would think they would have the resources and knowledge and clout to push IVIG through, but I guess not. And no one really responds to my emails. I basically don't have a neurologist and they pushed this on the rheumatologist. It is as if I am almost too common for them to care about my case.

It probably helped you tremendously to be in a less populated state and be a man. They decided I just had anxiety before they ever ran a single test and I have been pigeonholed since. Now, to be honest, I am a nervous wreck and a total hypochondriac. But that is what happens after ten years of invalidation and being told all your feelings are in your head. Totally abusive as far as I am concerned.

I, like you, have massive gut problems. I tried to change my diet multiple times but it does not seem to help. I don't eat gluten or dairy or sugar anymore (except on special occasions) and I don't really eat grains (I have gone on and off of quinoa and gluten free oats over the years without any change). I tried paleo, gaps, wahls. I tried all sorts supplements, like EVERY supplement ever! I also have yellow diarrhea since 2013 and pelvic floor issues (they blame mine on my pelvic congestion syndrome---a dilated vein).

Plus, I think I have major hormonal problems now because of insulin resistance and malabsorption issues. Which started on this horrible psych med they put me on a couple years ago.

I have major fatigue, swelling of joints, shoulder and ulnar nerve pain, blue fingernails, chest pain and trouble breathing, headaches, all sorts of gut problems (worse because of the meds), brain fog, cramping and burning in hands and feet, and shooting pains up and down my spine, plus TMJ. I have cracked 3 teeth because of the psych meds they put me on which just made be have serious reactions, some of which might not ever go away like the blue nails and breathing.

Although no one much cares to help keep treating me, the won't even consider any other cause of any of my symptoms. There was one doc that said maybe vasospasm but no one will do anything because of the neuropathy.

Except surgeons, they all want to do surgery. Like for the PCS, my median arcuate ligament, someone wants to take out my gallbladder (even though they said it is fine???)

I honestly wish I were dead just about everyday. Before this I was a really active person (competitive swimmer in college). I ran, surfed, swam, hiked and had friends. Oh, and I looked good! Now, 7 years of being really sick, I am deflated, depressed, exhausted to do even a walk around the block, totally friendless (people cannot handle chronic disease especially when there is no diagnosis), and I look a hundred years old.

I am only 39 and the best years of my life have been taken from me. We chose not to have children because of this. And I can't even get me emails answered.

Congratulations, Iglascoe! May I please ask, who is your neurologist?

I have this diagnosis as a severe case unresponsive to opioids (other than one that I cannot tolerate because it causes severe systemic edema) along with autonomic symptoms and two positive biopsies showing rapid atrophy of my IENFD in the lower dermis. Two Neuro-muscular specialists have written in my chart that I should receive IVIg, but neither is willing to write the script and deal with the scourge of our insurance system.

I have little bodily function and spend most of the day wearing a diaper, curled in a fetal position crying. I am hopeless, but I know that if I could just access treatment, I have a high chance of enough amelioration to have a meaningful quality of life and a future, a return to my career and a relationship. I am fairly young and have a college degree and have lived and worked in France and started teaching myself Italian, and now, after subacute onset at 31 and rapid decline... I am a mere shade of the man I was.

Any direction would be appreciated. Some doctor has to have compassion and look at the science and realize the risks are lower of attempting IVIg than fentanyl for decades and this condition with my autonomic system and sensory nerves. Heavy steroids could tell us something too, but that is risky business in our COVID world, and I feel IVIg would be safer despite the price’s being inflated due to greed.

Grateful for any leads! -Aaron

Hi Aaron,

So I finally started IVIG in February. It is now August and I am doing horribly. I since have gotten a diagnosis of Hashimoto's.

My nails are all white and painful, sometimes they turn blue. My feet are excruciating and I cannot lie or walk without extreme pain. I have trouble breathing all the time. After an iron infusion my nails turned turquoise. My heme is a moron and says "I don't know why" but that I should get another infusion. I won't do that. I cannot tolerate heat, cold, sun, standing, or lying down. I am just in pain all the time. And the horrible pain people at Stanford will give me Tylenol and say something like "you need to get back to your life and stop being so depressed"

I was on steroids and azathioprine in December and my Liver enzymes went up and now I have horrible abdominal pain in my RUQ and LUQ. Liver enzymes still have not normalized. I lost 20 lbs in a month. because I was so nauseated and had extreme pain. (In the fall Had a Hida Scan for my GB and after had a horrible attack and then had this dry skin for months which culminated in this crackling rash on my legs and neck this year). I had three cracked teeth and finally the fourth dentist I saw diagnosed a tooth infection in March. Then I had a liver biopsy which was mostly uninformative, some small beginnings of nothing they could define well. So I will probably have to do that again.

While not relevant to you, I had my menses for 60 days straight, and now I barely have it at all. My lymph nodes in my pelvis are swollen and I have a swollen bump on my left buttock I think from the pressure on the dilated vein in my pelvis (I have pelvic congestion syndrome and nutcracker syndrome).

My gastro is making me do the breath test AGAIN and the smart pill.

Luckily I took about 800mg of aspirin last week and quite a bit of the pain in my gut disappeared.

I have asked about all sorts of clotting disorders because of my C3 C4 and ANA, but I basically get ignored. I am being referred to a specialist for Mastocytosis, but that is unlikely. Like you, I lie around most of the day and my gut is just a mess. I used to be so active. One thing I have finally done is completely cut out any and all fat in my diet (besides all the other typical stuff) and I no longer eat protein from animals. Going vegan with zero/very low fat has helped me at least gain some weight back. But I had tried every stupid autoimmune high fat diet before and only ever got sicker.

Right now the burning in my toes and legs is horrific. I can barely walk and my skin is dry and my legs ache all the time.

Covid is the only reason I am keeping my job as I can do it from my bed, otherwise I would be applying for disability....which is really depressing because we will likely have to sell our house because it does not pay enough for us to afford to live (California is extremely expensive). I am the breadwinner in our home so it will be a massive blow.

Hi, Iglascoe!

Any updates on how you are doing, please? Are we to assume you got well and got busy being back to the business of living life? Many of us, including myself, are waiting with baited breath and are scarcely clinging on.

Thankfully,
Aaron

Dear Knotter,

Any updates, please? It is my understanding that the clinical trial is suspended indefinitely until after Covid. They notified me of the suspended status in May, and I cannot get any reply from the Harvard research team at this point for updates. We are curious to see how patients are doing who are already receiving actual immunomodulatory treatment. I have read of two case study patients with very positive results, and heard of a handful of others and read one positive and one negative report in this thread. Most, however, give no updates on the progress.

Please let us know if your daughter has improved, declined, stayed the same, only had steroids, had Rituximab, Infliximab, or another monoclonal antibody treatment, had IVIg, etc. !

Knowledge is power but compassion and dedication are the keys.

Gratefully,
Aaron