Wednesday 27 June 2018

Kelli Schrag, USA. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease.

Kelli Schrag, USA.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
Kelli Schrag, USA

Name:           Kelli Renee’ Schrag   

Location:       Amarillo, Texas, USA  


Limited (CREST) Scleroderma

Secondary Raynaud’s Phenomenon

Peripheral Arterial Occlusive Disease  

Triple X Syndrome (47, XXX Chromosomes)     

Year of diagnosis:    October 2012, May 2014   

Age of diagnosis:     32 years old, 34 years old     

Where/who diagnosed you?  

Scleroderma, Secondary Raynaud’s Phenomenon - Dr. Mortansen, Rheumatologist at Via Christi Clinic in Wichita, KS in 2012.  

Limited Scleroderma - Dr. Ashima Makol, Rheumatologist at Mayo Clinic in Rochester, MN in 2014.  

Peripheral Arterial Occlusive Disease - Dr. Robert McBane, Vascular Doctor at Mayo Clinic in Rochester, MN in 2014.  

Triple X Syndrome: 47, XXX Chromosomes - Dr. Charles Coddington III, Endocronologist at Mayo Clinic in Rochester, MN in 2014.   

What were your presenting symptoms?   

When I was a child I had broken arms and in my 20’s I had issues with my bones fracturing in my feet, rolling of my ankles when walking, and the ball of my foot hurting when I walked. 

In 2004, had bone loss in my lower mandible due to an aneurismal bone cyst.  

I remember during college breaks from 1999-2004 in the winter, I worked in maintenance and my hands would turn purple and often go numb.

No one ever seemed too concerned about it, but my hands would take a long time to warm back up.  

I continued working outside after college until 2010, when I chose to stay at home with my two children.

I remember when working in the flowerbeds and pulling weeds, my hands would get stiff and I had some indentations in one of my fingers from writing.   

After giving birth to my son in 2008, I had a pinched sciatica nerve and I began having issues with Carpal Tunnel.

In the winter of 2011, my hands started turning white with no reason or temperature change.   

In 2012, after running in a 5K race, my sciatica nerve was pinched again. My fingers continued to turn red, white, and blue into the summer months, where they also started going numb.

My hands started to swell and were mottled, with red and yellow, and red surrounding my cuticles. I had 4 miscarriages from 2007-2012 with 2 healthy pregnancies during that time.     

How long did it take for you to be diagnosed after first symptoms?  

2 months and 1 ½ years for being diagnosed.   

I never realized what was causing all of my symptoms listed above but, after staying home and not working, I was seeing Dr. Derin Dopps, my Chiropractor in Wichita, KS in August 2012 and after having 2 miscarriages in a row and my fingers turning red, white, and blue in the middle of the summer, he recommended that I go to a Rheumatologist, as he thought I had Raynaud’s Phenomenon.   

I scheduled an appointment with my Primary Care Physician, Dr. Ronald Stevens at Via Christi Clinic in Newton, KS as I had to have a referral to see Dr. Mortansen, Rheumatologist at Via Christi Clinic in Wichita, KS.  

I had to wait 2 months after this appointment, to get into see Dr. Mortansen. He took 22 vials of blood for lab work and x-rays of my chest, hands, and feet and the lab work was sent to Mayo Clinic in Rochester, MN.   

It took 2 weeks to get my results back from Dr. Mortansen and the lab results showed Scleroderma and Secondary Raynaud’s Phenomenon.

His office sent me a pamphlet of information on Scleroderma and in the pamphlet it had recommendations to have an Echocardiogram done annually.   

There was no follow up. I was just told to watch for symptoms, but I wasn’t sure as to what symptoms I should be looking for, as it was all a shock to me with no added information. 

I was left with nothing, which resulted in my checking the internet for answers which is where I found that most people don’t live past 40 years old when they have Scleroderma.  

I had lost hope and became very stressed with no information given to me following the diagnosis.

The Digital Tip Ulcers with basal line haemorrhages on my cuticles and fingernails started in January 2013, shortly after being diagnosed.  

I began seeing Dr. Brett Nedich, a new Primary Care Physician and Dr. Mortansen for these ulcers. The ulcers took 6 months to heal and 3 months later I had another one.

Dr. Mortansen recommended that I not eat cold foods, such as ice cream in fear it would cause Esophageal issues in time, and to wear warm gloves to keep my hands warm to help prevent the ulcers.
Thanks to Kelli for sharing her digital ulcer images
After having several digital tip ulcers for the following year and a half, I began to get hopeless and depressed. 

The pain from the ulcers was excruciating and I wanted to just quit living. I reached out to my family, friends, and most of all God and I began seeing things in a new light and seeking out other doctors with a holistic approach, using food as medicine.  

In 2014, I began seeing a Nutritionist and in May of 2014, I went to see Dr. Jeffrey Davis at Prairie Health & Wellness in Wichita, KS as he was a holistic medicine doctor and he referred me to Mayo Clinic in Rochester, MN.    

At Mayo Clinic, I saw a Rheumatologist, Dr. Ashima Makol and she did several blood tests including an ANA Centromere Test and she diagnosed me with Limited (CREST) Scleroderma.   

I also saw Dr. Robert McBane, a Vascular Doctor at Mayo Clinic who did a Vascular Study and diagnosed me with Peripheral Arterial Occlusive Disease, and Dr. Charles Coddington, an Endocrinologist, at Mayo Clinic who did Genetic Testing on me and diagnosed me with Triple X Syndrome (47, XXX Syndrome), which may have been the cause of the 4 miscarriages.     

2017 Reality:   

I currently have no digital tip ulcers, only scarring on 3 of my fingers from old ulcers. I am taking 4.5 mg LDN (Low Dose Naltrexone), but my doctor would like to see how I do off of the medicine since I’ve been on it for 15 months now. 

I started the LDN in February 2016 gradually to help with my symptoms as I had heard that it had been beneficial to others with autoimmune diseases. It has helped tremendously!   

Once I started taking the LDN, I began to notice I could do a lot more with my hands! My hands had caused me to not be able to function or work very well and with the LDN I was able to actually use my hands, do office work, close my fist, type, write, meal prep, cook volunteer, hold a book without my hands falling asleep, and lots more!   

For the past 2 months, I’ve used an Infrared Sauna daily for 30-45 minutes to help my body to detoxify and to heal. I had a spot on one finger that I was concerned about developing into an ulcer, but it is completely gone after the use of the Infrared Sauna!   

My hands tend to swell and are always mottled with red and yellowing in color and my fingers are red around my fingertips and cuticle area. I tend to get Raynaud’s attacks when it is cold, they are in pain, and in stressful situations.   

I am currently doing an Elimination Diet to rid my body of added toxins, as I have become very sensitive to many different foods that I eat and ingredients that touch my skin.

I am allergic to Wheat, Gluten, Dairy, Chicken, Onions, Candida, Eggs, Corn, Tomato, and many other things. Histamine foods cause a lot of bloating and inflammation within my digestive tract.

I get constipated and have haemorrhoids when certain foods are eaten. It is hard to stick with a diet when I never know what may cause an issue with my body.   

I drink Zeal by Zurvita as a supplement to help provide my body the antioxidants and nutrients it needs and Vegan Shakeology by Beachbody to provide my body with a protein and additional antioxidants and nutrients that my body is unable to get from having so many allergy sensitivities.   

I take 2 Tbsp of BRAGGS Apple Cider Vinegar, 4 oz water, ½ squeezed lemon juice, and 1 Tbsp Honey 2-3 times a day to help my digestive issues.   

I take a Probiotic with 100 billion Live Cultures and 16 strains of bacteria, 3g of Krill Oil to get my Omega 3’s to help with joint pain, Vitamin E to help get healthy fats in my body, DHist to help with allergies, 120 mg Gingko biloba to help with the Raynaud’s Phenomenon, 250 mg Strontium citrate to help with bone health due to significant bone loss in my lower mandible due to being allergic to the metal oral implants I had placed in my mouth in 2006, 1000mcg Vegan Vitamin K2 to help with bone health, and 150 IU Vitamin E Oil as an antioxidant.   

My mouth used to be very dry and now it is moist after having the metal in my mouth removed from the oral implants, screw, and crowns.   

I use Peroxyl and Himalaya Herbal Toothpaste for my oral care.   

I have had the following annual tests done, since being diagnosed in 2012:

Pulmonary Function Tests to check my lungs,

Echocardiograms to check for blockages in my heart,

and Chest X-rays to check for blockages.

All tests have been normal with a small blockage in my chest.  

I had oral surgery in March 2017 to remove my oral implants, a partial screw that had broke when the oral surgeon was trying to remove it in June 2016, and crowns of 5 teeth in my lower mandible that were placed in 2006, due to a metal allergy to Titanium dioxide, Titanium sulfate, and Vanadium that I was tested for in November and December of 2016 with Neuroscience Pharmasan Labs MELISA Metal Allergy Blood Tests by my Primary Care Physician, Dr. Eric Ehle.  

My hair has been falling out a lot which may be due to detoxification of the oral surgery and the metals, but I’m not sure.   

I have varicose veins on my right leg and ankle that can become painful and swollen at times when I walk and sit for long periods of time.   

I have red dots on my face and along my cuticles on my fingernails, which could be Telangiectasia.   

I have low back pain, shoulder, and neck pain a lot, which I see my Dr. Eric Ehle for and he does chiropractic work on me and acupuncture.   

I have Raynaud’s Phenomenon and wear mittens almost all year round, but I’ve noticed I haven’t had to wear them as much since I had the metal removed from my mouth. 

I have vertical ridges and very small moons on my fingernails. My house is kept at 75 degrees, if it is below 73 degrees inside or outside, I get too cold and have to dress like it is freezing outside.   

I am currently seeing Dr. Ehle as my Primary Care Physician and his Nutritionist in his office, to help me figure out what foods would help me to absorb more nutrients and which ones to get rid of to heal my gut.   

I no longer take the Tracleer as it was recommended by my Primary Care Physician to remove it before my oral surgery. I noticed no difference in removing the Tracleer and my current condition remained well.  

I have since had the Paraguard Copper IUD removed that I had placed for taking the Tracleer medication to prevent pregnancy and birth defects and I no longer have to have monthly liver function tests or pregnancy tests.

After stopping the Tracleer, I did not have my menstrual cycle for 51 days, and I had done a pregnancy test 1 month following stopping the medication, and the test was negative, so my body may have just been adjusting to the medication not being taken.  

I still am very careful with what I put on my body as I develop hives easily, if I have an allergy to certain ingredients, especially alcohol, latex, grape seed oil, and rosemary extract. I have more energy than before and am able to exercise more.  

My face structure has changed, since having the oral surgery, in a good way, as my jaw line looks straight and not slanted.   

I am able to continue volunteering at the school my kids attend and the church we attend.

I have had several doctors and specialists since 2012 and have become my own advocate in trying to find the best person to care for me. I have currently found that with my current primary care physician, Dr. Eric Ehle, Well Life Family Medicine in Amarillo, TX, and by the grace of God to get me through this fight!  

In June 2015, I started a Facebook Page with Nicola Whitehill as an Admin, and my blog  to help keep others informed about my health, and to help them, to also use food as medicine, and to help them to continue fighting and being their own advocates in this fight for a cure for Scleroderma!   

I would like to incorporate juicing and bone broth into my diet to help heal my gut! And I am excited to see what my body does as I continue to heal after the oral surgery I had in March of 2017.

I haven’t been able to work since 2013, when I got the digital tip ulcers, but I would like to look into it.   

I would not have been able to type this or write with my hands between 2013 and 2016, due to the digital tip ulcers I was getting. Here is what happened during that time:  


In 2013, when the digital tip ulcers started, I began seeing Dr. Brett Nedich as my primary care physician and he had no clue what to do about the digital tip ulcers and found pictures on the internet to show me what they could be.  

He referred me to a vascular doctor to have an Echocardiogram done and after the test came back normal, he had me have a Transesophageal Echocardiogram (TEE) Test done to check my heart for blockages.

There were no signs of a blockage to cause the digital tip ulcers.  

My rheumatologist, Dr. Mortansen recommended that I use Nitrobid for my hands to improve circulation and to take Slo-Niacin to help me to stay warm with the side effects of hot flushes, they were not very pleasant.

I stopped the Slo-Niacin, but continued to use the Nitrobid.  

My rheumatologist also had me take 80 mg aspirin and Amlodipine daily. I continued to get ulcers that lasted 6 months and would return on another finger 3 months after that and I had to stop my small home business selling Premier Designs Jewelry as I was homebound due to the weather and the pain in my hands.   

I wanted more answers about why my body was continually getting the digital tip ulcers. After being severely depressed and stressed and almost committing suicide, I found support from my husband, family, friends and especially God.

I realized this fight was more than I could handle and I needed to put my complete faith, trust, and hope in God to get me through it. After I made that decision, I began seeing things in a whole new light!   

In 2014, I began seeing a Nutritionist, Dr. Patrick Garrett in Newton, KS. He helped me understand why my body may be doing some of the things it was and we found more sensitivities that my body had towards food and things I applied to my skin.   

In March 2014, I had a Comprehensive Food Panel done, called an IgG ELISA blood test to check what foods caused the highest amount of inflammation in my body. I was using MediHoney on the digital tip ulcer as it was recommended to use Manuka Honey as a healthy alternative to healing wounds.   

I also stopped seeing my primary care physician and I began seeing a Holistic Medicine Doctor, Dr. Jeffrey Davis at Prairie Health & Wellness in Wichita, KS, and he became my Primary Care Physician.  

He referred me to Mayo Clinic to get further diagnosed. Dr. Robert McBane, is my Vascular Doctor at Mayo Clinic and after doing a vascular study, they diagnosed me with Peripheral Occlusive Arterial Disease of the Upper Extremities due to a blockage in my right pointer finger where my fingertip was permanently purple from the lack of blood flow.  

Dr. McBane took a conservative approach to start with by prescribing an Intermittent Arterial Compression Pump to help pump oxygen into my arms and provides blood flow to help my hands to heal from the digital tip ulcers.

I was to wear the cuffs and run the pump for 8 hours/day when I had the ulcers and 4 hours/day for 3-6 months without the ulcers.  

Dr. Ashima Makol, Rheumatologist at Mayo Clinic, had me switch to taking Nifedipine instead of Amlodipine, as it wasn’t working. Dr. McBane also recommended that I use Iodosorb for the digital tip ulcer to debride the wounds.

Iodosorb was $60 a tube and insurance would not pay for it, so I never used it during the time I had this digital tip ulcer. 

While I was at Mayo Clinic, I saw an Endocrinologist to do genetic testing to see why I’ve had so many miscarriages, 4 total and why I’ve had 2 healthy pregnancies during that time.

It was found that I have Triple X Syndrome (47 chromosomes, XXX Syndrome), which could be the cause of the miscarriages.  

After leaving Mayo Clinic and continuing the usage of the Intermittent Arterial Compression Pump, the digital tip ulcer began healing.

I continued the pump after the healing of the digital tip ulcer as recommended. I had trouble with insurance covering the Intermittent Arterial Compression Pump as it was seen as experimental.  

The stress of that, and all that was going on, created another digital tip ulcer and it was recommended that I see Dr. Shirley Wang, a Rheumatologist in Wichita, KS.

She recommended that I take Plaquenil, but I did not take the medicine as my primary care physician didn’t recommend it as it was just covering up the symptom of inflammation and there were ways to address that besides using a medicine as a band aid for the symptom. 

I had allergy testing done by Dr. Jeffrey Davis to determine what foods I needed to stay away from as well.  

Dr. Shirley Wang recommended that I take Sildenafil (aka Viagra), which I did take, but I didn’t notice a difference.  

I began seeing a hand doctor as well in Wichita, KS and it was recommended that I not go outside if the temperature was below 40 degrees and to keep my body covered as I could risk losing my fingers or toes from gangrene.  

I had not had any issues with digital ulcers on my toes, but I’ve had issues with cold feet and mottled yellow and red colors on the bottoms of my feet. I researched the medicine Tracleer, also known as Bosentan, and found that it could be taken to prevent digital tip ulcers.

After lots of paperwork and having an IUD placed as a requirement for taking the medicine, Dr. Shirley Wang prescribed the medicine to me.  

In January 2015, I had severe pain in my Left ring finger and both hands turned grey and white in color and I went to the Emergency Room where they gave me Morphine for the pain which didn’t even touch it with the first dose and had to give a second dose to take the pain away.  

Dr. Shirley Wang, my Rheumatologist, sent me in for a bone scan where it was determined that I had Osteomyelitis, a bone infection, in my finger.

They put me on 6 weeks of IV antibiotics that I gave myself at home through a PICC Line that they put in my upper Right arm. I went in weekly to have it checked and to have the bandage changed.

Then I continued with 3 weeks of oral antibiotics. I was also seeing a wound care doctor, Dr. John McEachern in Newton, KS. They used a pain medicine that they rubbed on my finger that caused a Raynaud’s attack.  

They also gave me bandages to use to change daily, called Medipore Tape and Mepilex Bandages to help with the healing of the digital tip ulcer. 

After seeing the wound care doctor, it was too painful for me to allow them to touch my finger and care for me, so I began my own wound care at home and I bought Iodosorb, Mepilex Bandages, and Medipore Tape from the website for a fraction of the cost.  

During this time the digital tip ulcer on my finger began to heal, although it has left a scar and all my good and bad bacteria was gone. So I had to rebuild my immune system from all the antibiotics.  

In June 2015, I started the Facebook page Healing Loving Scleroderma with Real Food with Nicola Whitehill as my Admin to keep others informed about my health, inform others about Scleroderma and using Food as Medicine, and helping others to continue fighting and being their own advocates in this fight to find a cure for Scleroderma.  

During this time, I began Juicing following a 28 day plan by Jason Vale and I continued it for 2 more weeks after the 28 days was complete. I felt my best during this time, with occasional Raynaud’s symptoms.

The inflammation decreased significantly and the joint pain was gone! I felt amazing and my skin looked great! I was able to exercise and lose weight! I went to Mayo Clinic for a follow up and the doctor’s told me to keep doing what I was doing with the juicing.  

I had a spectra cell test done to see what nutrients I needed and the results showed that I wasn’t absorbing the nutrients from all the juice I was taking in, from the fruits and vegetables. My Primary Care Physician, Dr. Jeffrey Davis recommended several supplements and that I incorporate more fibre and lean meats in my diet.  

I continued to juice, but eventually stopped as it was hard to keep up with the supplementation and the juicing with 2 children and a family as we were preparing to move to Amarillo, TX for a new job for my husband as we were looking for a place that was warmer than only 3 months out of the year.  

In October of 2015, my family moved to Amarillo, TX and I had developed a digital tip ulcer when my husband moved here in September 2015. I had trouble getting into see a Rheumatologist and get established with a new doctor, which was an awful experience as no one could see me very soon being a transfer and no one in Kansas knew any doctors that specialized in Scleroderma care.  

Not having a doctor resulted in me using the bandages, Iodosorb, and Manuka Honey to do my own wound care at home. I am thankful that changing my bandage and dressing on my digital tip ulcer twice daily was very beneficial and it healed in 7months. 

It was hard to get a doctor, let alone one, to prescribe the Tracleer medicine, as it wasn’t a medicine the Rheumatologists here were familiar with. I was able to continue the Tracleer as it was prescribed from my Rheumatologist in Wichita, KS and covered under Pathways Insurance. 

After several months I was able to get into see a Rheumatologist, Dr. Christopher Wright. He prescribed Sildenafil (aka Viagra) to help with the Raynaud’s in March of 2016 and he referred me to Dr. Bruce Baker, a Pulmonologist at the Diagnostic Clinic in Amarillo, TX to have a Pulmonary Function Test done and to Dr. Daniel Beggs, a GI Doctor at the Diagnostic Clinic.  

Dr. Beggs said they could do tests on my GI Tract and could prescribe antibiotics. I told him I would like to wait as I didn’t want a band aid to manage a symptom. Dr. Baker did the tests and was willing to prescribe the Tracleer for the digital tip ulcers as Tracleer is normally used for Pulmonary Hypertension.

I had been taking the Tracleer as a way to prevent the digital tip ulcers. I continued having liver function tests and pregnancy tests done monthly as Tracleer could cause liver failure and severe birth defects. My liver function stayed normal during this time and I did not become pregnant.   

In February 2016, I began taking LDN, Low Dose Naltrexone prescribed by my primary care doctor in Wichita, KS. I began looking for a holistic medical doctor that would see me as it wasn’t convenient having a doctor 6 ½ hours away.

I began seeing Dr. Eric Ehle at Well Life Family Medicine in April of 2016. It has been a relief as I have found someone that wants to help my body as a whole and not just putting a band aid on the symptom and taking medicine all my life.  

After seeing a new dentist in Amarillo, TX, I was referred to Dr. Aaron Adkins, D.D.S. in June 2017, who did a deep cleaning on my lower mandible teeth as I was having severe swelling of my gums and recession of my gums around several of my teeth and a cold sensation when it was windy outside.

During this cleaning, they surgically removed a part of a metal screw that broke in my lower mandible during surgery that was placed in 2004 from a bone graft that I had done. The bone graft was put in after I had an aneurismal bone cyst removed that caused significant bone loss and the teeth to be decayed inside. After the cleaning and the removal of part of the screw, the swelling returned.   

In August, I stopped taking the Sildenafil as it wasn’t helping prevent the Raynaud’s attacks and we began trying Acupuncture on my hands and body to help relieve the symptoms of the Raynaud’s that I was having. 

In September, I had a bad fall and bruised my tailbone. The joint pain continued and it was harder to get out of bed. My pelvis had to be readjusted with several adjustments by Dr. Eric Ehle and acupuncture was done to help with the healing.   

In November and December 2016, I had MELISA Metal Allergy Testing done with blood tests to see if I was allergic to the metal in my oral implants as the swelling around my gums continued. The MELISA Metal Allergy Tests showed that I was allergic to Titanium dioxide, Titanium sulfate, and Vanadium all of which were in the makeup of my oral implants and crowns.   

My primary care physician, Dr. Eric Ehle and dentist, Dr. Jack Fong, Amarillo, TX were concerned with my immune system with me having surgery, since my husband and I, decided that I should have the metal removed from my mouth. It was recommended that I have IV Therapies done 5 times with added supplementation before and after surgery to help my body to heal after surgery.   

The IV’s were hard to place for the nurses as it took 2-3 sticks before they could hit the vein due to my Raynaud’s attacks during this process, the pain, and my veins rolling on them. They used a small needle as my skin in this area is tight. Once the IV was placed, I warmed my body with a warm electric blanket and mittens. 

Once I was done with the IV supplementation, my body was warm and I was tired for about 2 days after the IV Therapy.  

After that, my body had adjusted to the nutrients it was given. I also increased my supplementation of added nutrients and continued taking Vegan Shakeology to get the added antioxidants, nutrients, and protein in my diet to prepare my body for surgery.  

In February 2017, my immune system was not functioning correctly and my primary care physician, Dr. Eric Ehle did a N.A.E.T. Treatment with Laser Acupuncture and Auricular Acupuncture to try to desensitize my body from the different allergies and allergies to the metals. This procedure began to make me drained and very fatigued.   

He recommended that I have a GI Stool test done as I was having GI issues in February 2017, to check for parasites, pathogens, bacterial flora, and fungi/yeasts.

The results showed that I had a Bacterial Pathogen called Salmonella, high amounts of normal bacterial flora, called Enterococcus spp. and Escherichia spp., 2 parasites called Dientamoeba fragilis and Endolimax nana, and 2 types of fungi/yeasts called Candida spp. and Geotrichum spp. The doctor recommended that I take Tanelbit and Phytostan to get rid of the Candida as that was the main concern at the time.   

In March 2017, Dr. Bryan Bailey, D.D.S. an Oral Surgeon in Amarillo, TX removed my 4 oral implants, the rest of the screw that was left in my mouth in June 2016, and the crowns that covered 5 of my front lower teeth. The metals in my mouth had corroded and were described as if I had a car battery in my mouth with the electrical currents and saliva.  

I had significant bone loss in my lower mandible once again. My dentist constructed a temporary partial plate made out of nylon and plastic to see if I noticed a difference after the metal was all removed.  

I used a homeopathic protocol before and after surgery to help with pain and used TRF 350 and Strontium to supplement my body. My body has healed very well and I have continued supplementation to help build my immune system back up. I also had a very dry mouth before this surgery and now I don’t have a dry mouth.   

As of right now, I feel as though I am on the right track to healing and I would like to see more research being done to use Food as Medicine and more knowledge from doctor’s as to how to work with those of us that have Scleroderma to increase our quality of life without giving us another medicine to put a band aid on the symptom. Help us as patients learn to manage the symptoms in ways that are beneficial to our bodies as a whole!   

My 3 biggest current challenges due to my diagnosis?  

Gastrointestinal problems causing a compromised immune system due to leaky gut and figuring out what is best to rebuild my immune system to heal and staying away from foods that cause allergies  

Raynaud’s Phenomenon with red, white, and blue fingers with cold, pain, and stress along with swelling in my fingers and hands causing my hands to be tight and mottled in color with dry cracked cuticles and red dots along my cuticle lines   

Bone loss due to dental problems

What are your 3 top tips for living with your diagnosis? 

Research your diagnosis and how to manage your symptoms holistically.

Be your own advocate and keep searching for the best way to care for yourself. 

Live simply by learning to say no to stressful situations and pray and trust that God will heal you.  

Manage your symptoms consistently and follow-up with annual tests and your doctor to get the best care.   

What are you 3 wishes for the future?  

Doctors, Specialists, & Dentists that know how to care for their patients by looking at the patient as ‘a whole’, and seeking out the root cause and finding ways to care for them, instead of just giving medicine to put a band aid on the symptom to avoid car-ing for the individual patient.   

There would be a cure using food as medicine and a known cause of why the dis-ease affects those with the disease.   

Health Insurance would cover what is needed to benefit those of us dealing with the disease as that causes unneeded stress and makes symptoms worse. 
June 2017.  

2018 UPDATE:

My primary care physician, Dr. Eric Ehle has recommended my next step is to detox my body and to remove the rest of the mercury amalgams and replace them with composite resin that is compatible to my body.

I’m currently in the process of looking for a dentist that I trust to give me the best care to remove my mercury amalgams in 3 phases as I'm so sensitive to metals and several other things.

I have to allow my body 21 days or more, in between each phase to reset itself, and prepare for the next phase.

In addition to waiting to find a new dentist, my periplex partial plate broke that replaced my oral implants I had removed due to my metal allergy in 2016. It has now, been repaired.

I also have been in for a follow up with my vein doctor and he found some perforated veins in my ankle that have caused swelling.

I will be having a vein ablation done on those veins in July. While I wait, I wear Copperfit Compression Socks at bedtime to help with the swelling.

I went to get my eyes checked and as a symptom of Scleroderma I have dry eyes, I now am using Retaine Dry Eye Drops twice a day to help my eyes have moisture.

I take 97.5 mg of Nature Throid Thyroid medicine to help with my hypothyroidism (underactive thyroid).

I am taking supplements that include:

Vitamin D3 50,000IU once a week, Probiotics 100 Billion Strains 1- twice a day, Sago-Palm (Vitamin C) 500 mg 1-twice a day, D-Hist (for allergies) 2-twice a day, Magnesium Complex 1-once a day, Vitamin E 400IU 1-twice a day, Lugol's Iodine 2 drops once a day, Thorne Mediclear SGS Protein (detoxing) 2 scoops- twice a day.

I am exercising to help my joints and build muscle.

For the detoxing, I have been drinking Thorne Mediclear SGS and I've noticed a difference! My inflammation has decreased and I am eating better and not craving foods!

I'm excited because I have finally found a protein powder that I can actually drink without the food sensitivities!

It has been a journey to know what is best for my body, but I know it best!

My diet consists mostly of vegetables, greens, fruits, berries, grains, nuts, seeds, and some meats.

I have food allergies to corn, chicken, strawberries, cinnamon, and rye.

My allergies have changed over the years and I have become more tolerant of foods I once was allergic to.

I’m allergic to several medications since several of them have ingredients which are derived from corn.

I am also allergic to lavender essential oil, grapeseed extract, titanium dioxide which is also in several medications, food, lotions.

I have to be extremely careful what I put in and on my body.

I utilize the one benefit Scleroderma gives me which is a nice tan in the summer months. I use All Good Sunscreen to protect my skin.

Sometimes, I feel like it is an obsession to know all that my body can and cannot handle, but I have to take care of my body the best I can!

Of course, I fall off the wagon and get off track once in a while, but the important thing is that, I get back up and keep fighting!

As always, it's best to check with your doctor before starting something and being your own advocate by knowing what your body can and cannot have!

I have a sore on my right pinky finger that throbs with pain and is extremely painful when it hits things. 

I use manuka honey or Medihoney and a latex free bandaid, although I don’t keep it covered all the time.

I had a month of not taking Low Dose Naltrexone (LDN), but I have started taking it again as it helps with getting rid of ulcers, and I’ve had this sore for a month now from a sliver.  

I will start with 1/2 a tablet per day as a loading dose for a few weeks before moving up to 4.5 mg / day.

I use a paraffin bath to help get heat to my extremities which helps in the healing process.

I use Arnica montana for pain medicine.


I have not participated in a Clinical Research Trial.

I would only consider doing one if it was using food as medicine to heal my body and through a holistic approach.


I enjoy spending time with my family.

I have just been to Florida with my Mom and sisters.

Facebook Page ‘Healing Loving Scleroderma with Real Food’, Click here.    

Huge thanks go to Kelli for sharing her scleroderma reality and experience in such detail, for Scleroderma Awareness Month.

Kelli has shown huge tenacity with ensuring she has the best medical team around her, as well as, thanks go to Kelli for all that she does for sharing her experience, to help other patients, throughout the year. 

I had the honour of being a member of the medical team who devised the NHS Guidelines for Digital Ulcer Management in Scleroderma, published 2015. Click here 

To read my articles: 
Current Unmet Clinical Needs 2018, Click here 
CALCINOSIS, Click here  
RAYNAUD'S, Click here 

Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here   
Global Patient Profiles Campaign Index, Click here  

Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here   
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
2017 Global Patient Profiles Campaign Introduction, Click here 
'Being your own awareness advocate', Click here
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
2016 Campaign Video, Click here  
March 2018 Autoimmune Disease Awareness Month, Click here  
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 

Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

To read my articles:
Importance of an early diagnosis, Click here      
Taking Part in Clinical Research Trials, Click here     

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here    

Expert Specialist Centres, Click here      
My Skin is Cured from Scleroderma, Click here   
UK Guidelines for Managing and Treating Scleroderma, Click here        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, Click here     

Raynaud's, Click here   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, Sept 2017
I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman. 
I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004. 
1st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis. 
I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
Living the dream, scleroderma style.  
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London.  

100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.

Last Update: June 2018

No comments:

Post a Comment