Sunday, December 2, 2018

Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis? (Part 3 - Test Results)


Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis?

PART 3: My Test Results



Overview of my Results

This blog is an overview of my results from the 23andMe Genetic Variant Nutritional Assessment ran and translated to me by ScoliSMART doctor - Dr. Mark Morningstar.  Before I get started here is a quick recap.


 A Quick Recap
I recently watched a video from Dr. Mark Morningstar who explained how there are underlying factors that cause scoliosis to happen, and that scoliosis treatment is about more than just treating the curve.  According to Dr. Morningstar there are gene variations involved with idiopathic scoliosis; specific genes that something can be done about from a functional medicine/therapy perspective.  


I ordered the 23andMe test kit to go through the process of finding out what my genetic information will tell me about my scoliosis.  Once I received my results from 23andMe - I emailed the raw data file to Dr. Mark Morningstar who has 28 genetic variants he looks at directly involved with scoliosis development.  He runs the raw data through his own software program to create a report (about 40 pages long) that measures these genetic variants.  The higher the number of these genetic variants a patient has- the more likely they are to have a progressive form of scoliosis.  I had a phone review with him recently to go over my report.  Here are some things I learned.



Results Overview:

The report itself is based on the DNA that I inherited from my parents.  It’s to help learn what my body may be lacking in the ‘production of antioxidants and other nutrients and molecules needed for health.”  The test says, “Working with a qualified health practitioner, trained in genetic nutrition, allows me a unique ability to customize a nutritional program based upon these individualized results.”

First, I learned that out of the 28 genetic variants Dr. Morningstar looks at for scoliosis – I had 10 of them.  If someone has 7 or more of the variants I’m told they have a 75% chance of developing scoliosis.  We already know I have scoliosis, but for those younger patients taking the test who haven’t developed scoliosis yet – that’s great info to have, in my opinion. 6 of my variants are digestive, and 4 are methylation.  I’ll cover some of my variants below.

NOTE:  METHYLATION is what makes everything work!  According to the report, “The methylation process is a critical one in the body. Methylation turns genes on and off and regulates just about every body function including the rebuilding and repairing of the body. Therefore, it is crucial that you methylate properly.

To methylate properly, we need something called SAMe. The body has a complex mechanism to make it. When SAMe performs its appropriate task, it turns into homocysteine, a substance that needs to be recycled back into SAMe and turned into the master antioxidant, glutathione.

Folate, methyl B12, choline, and the proper function of many enzymes are needed for this process to work properly.” 

The test lists the enzymes and possible variants that can make this process work less optimally. When there are deficiencies, supplementation may be helpful.

Continuing with the overview of my results:

So the purpose of this test is to help identify areas where my DNA may not be working at 100% efficiency, so that changes can be made through supplementation, lifestyle, and diet to provide support and improve my overall health. 

In relation to scoliosis, (from my understanding of the info presented to me) if the genetic variants are left unaddressed it could lead to curve worsening over time.

In Regards to "Digestive", I learned that for the gene MCM6 - both of my parents gave me a less than optimal gene copy to make the enzyme. 

According to the test, “Lactose is a sugar found in milk and dairy products. The MCM6 gene influences the LCT gene which is the gene that provides instructions for making an enzyme called lactase. Lactase breaks down lactose found in milk and dairy products into smaller sugars called glucose and galactose for absorption. The body then absorbs these simpler sugars into the bloodstream. Lactose intolerance in adulthood is caused by gradually decreasing activity of the LCT gene after infancy.

**So, I should probably stay away from dairy.  I have confirmed that both of my parents have an issue with digesting dairy.

Next, from both parents I have variants in the gene that causes the potential for peanut sensitivity.  According to the test, “Studies have shown that peanut allergies are one of the most common food allergies.”

**Probably a good idea for me to stay away from peanuts.

Next, from both of my parents I have variants in the FUT2 enzyme. 

Info in the test in regards to this, “Your intestinal tract contains a vast microbial ecosystem with beneficial bacteria that contribute to immune health, good digestion, neurotransmitter production, generation of important nutrients such as vitamin B12, among other things. Maintaining a healthy intestinal flora is essential for overall body health. This bacterial community depends on prebiotics as a food source to maintain good health and proper balance of the gut flora population. The FUT2 gene is responsible for making these prebiotics.

Variants in the FUT2 enzyme may create a potential for disruptions in the composition of the intestinal flora. The use of antibiotics can be particularly stressful to the gut health of someone with this variant. There is potential for a variety of adverse effects if the intestinal flora becomes disturbed or imbalanced.  Your health care practitioner may want to monitor gut health with this variant, and recommend appropriate support such as supplementation with prebiotics and/or probiotics.”




Some other variants I had were:

ACAT: “Takes both fats and proteins, and turns them into a molecule which is the first step of energy production inside the cell. From a nutritional standpoint, ACAT genetic variants may be the most significant. When the ACAT gene is not doing its job, there may be fatigue from not enough energy production, and inflammation in the body from fats being oxidized.”

**I was told it would be a good idea for me to eat good fats throughout the day instead of all at once.

SOD: “The SOD enzyme makes the very powerful antioxidant superoxide dismutase (SOD). SOD neutralizes the free radical superoxide. Variants on this gene may increase the amount of superoxide radicals, and subsequently may also increase the formation of the nasty oxidative agent, peroxynitrite, another free radical.”

PON1 – “Pesticide use has been increasing over the years, and has become quite controversial.  Our body needs the ability to detox from them and the PON1 (Paraoxonase) gene, along with Glutathione, plays an important role in helping the body clear them.

PON1 (Paraoxonase) plays a large role in removing pesticides. It is also involved with supporting HDL function, crucial for healthy circulation.

The most important gene so far is the first one listed, the PON1 Q192R, however, the rest may play an important role as well.

If you have variants in PON1 Q192R, talk to your health care professional about how a custom designed supplement may support the function of PON1. You may want to eat organic foods as much as possible, and limit exposure to strong chemicals.”

** Was told it would be best to eat produce which has not been sprayed.

Had some variants in MTHFR.

Learned I’m susceptible to being insufficient in B12.  “B12 plays many roles in the body, such as energy creation and iron absorption. Variants in the GIF enzyme may reduce the body's ability to absorb B12, and the TCN1 and TCN2 may impact the transportation of B12. FUT2 variants, as they impact digestion, may impact B12 assimilation.”
“The more variants in this section, the potential higher the need for B12.If there a lot of variants, your health care professional may want to do more testing for B12 status.”




MAOA: “The MAO gene supports the breaking down of Serotonin, Dopamine, and Norepinephrine.  If Serotonin is low, this may be helpful. Under some conditions high Serotonin may create stress.”

COMT:  “The COMT enzyme breaks down dopamine. Variants in this enzyme actually preserve dopamine, increasing its bioavailability. But if dopamine is already too high, it may cause agitation, or difficulty thinking clearly. COMT also plays a role in breaking down some hormones.”

Lastly, BH4“BH4 or tetrahydrobiopterin is a very important molecule. It is needed to make Serotonin, Dopamine, (both for mood), Melatonin (for sleep) and Nitric Oxide for circulation, After BH4 make the neurotransmitters Serotonin and Dopamine, it converts into BH2, then needs to be turned back into BH4. The DHFR and QDPR enzymes are needed for this conversion, while SAMe, NADH and folinic acid are co-factors.  Variants that lower SAMe and the MTHFR A1298C variants may lower what the body needs to make BH4, while variants in DHFR and QDPR may lower the conversion of BH2 to BH4.”



                                           Recommendations

So, at the end of the day what were the recommendations made to help me?
*Avoid dairy, peanuts
*Eat good fats throughout the day instead of all at once
*Eat produce that hasn’t been sprayed with chemicals
*Take B12 supplement
*Take ScoliZyme Supplement
*Take MTHFR Support Supplement



Here’s the info about ScoliZyme as listed on the website:  https://www.scolismartlabs.com/genetics/scolizyme.html/



Acid-Resistant, Vegan-Suitable, Digestive Enzymes
ScoliZyme is a cost-effective, non-prescription, broad-spectrum, digestive enzyme formula suitable for vegans and designed to support the digestion of fat, protein, carbohydrate, fiber, and lactose. This comprehensive formula contains lipase, proteases, alpha-galactosidase, hemicellulase, papain, lactase, and other key digestive enzymes. ScoliZyme works in a wide pH range—unlike porcine pancreatin, which works in a narrow pH range.
DIRECTIONS: Take one to two capsules daily, or use as directed by your healthcare practitioner. If necessary, capsules may be opened and contents sprinkled over food. Consult your healthcare practitioner prior to use. Individuals taking medication should discuss potential interactions with their healthcare practitioner. Do not use if tamper seal is damaged.

STORAGE: Keep tightly closed in a cool, dry place out of reach of children.

DOES NOT CONTAIN: Wheat, gluten, yeast, soy, animal or dairy products, fish, shellfish, peanuts, tree nuts, egg, ingredients derived from genetically modified organisms (GMOs), artificial colors, or artificial sweeteners. Maltodextrin (derived from corn) is used to standardize enzyme activity.


Here’s the info about MTHFR Support as listed on the website:  https://www.scolismartlabs.com/genetics/mthfr-support/



Published research indicates that the MTHFR enzyme pathway may be genetically altered in the majority of patients with idiopathic scoliosis. This formula helps to support this enzyme pathway in those patients who test positive for the MTHFR variant.



My Thoughts

I feel like the information I got from the testing was beneficial and interesting.  It's really great to have specific information that I can use to decide the best plan for me in regards to diet and supplementation.  The digestive information made perfect sense to me.  I began having digestive issues about 6-7 years ago.  I have since worked with a naturopathic doctor to help me change my diet and add supplements to improve my health and get back to feeling good again.  I do plan to follow the recommendations provided and observe any changes I experience.  




To learn about other testing and supplements available through ScoliSMART you can check out ScoliSMART Labs




ABOUT THIS BLOG & OTHER LINKS

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:

To learn about my scoliosis charity:

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com


About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!

Saturday, October 6, 2018

Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis? (Part 2)


Scoliosis & Genetics: Can 23andMe TESTING Provide Info About Scoliosis?


PART 2

Below you'll find Step by Step instructions on what I had to do to submit my Raw Data File to Dr. Morningstar once receiving my results from 23andMe.  Once going through these steps Dr. Morningstar's office calls to schedule a time to go over the report.  I'm told the call is about 1 hour - mine was scheduled in November.

A Quick Recap

I recently watched a video from Dr. Mark Morningstar who explained how there are underlying factors that cause scoliosis to happen, and that scoliosis treatment is about more than just treating the curve.  According to Dr. Morningstar there are gene variations involved with idiopathic scoliosis; specific genes that something can be done about from a functional medicine/therapy perspective.  

I recently ordered the 23andMe test kit to go through the process of finding out what my genetic information will tell me about my scoliosis.  I have recently received my results from 23andMe, and emailed the raw data file to Dr. Mark Morningstar who has about 28 genetic variants he will look at directly involved with scoliosis development.  He runs the raw data through his own software program to create a report (about 40 pages long) that will measure these genetic variants.  The higher the number of these genetic variants a patient has- the more likely they are to have a progressive form of scoliosis.  I've scheduled a phone review to go over my report with him which will take place in November.

23andMe has 2 testing options - one is $99, and the other $199.  You get the raw DNA data file no matter which test you buy, so you can get the cheaper one for this purpose.  They sometimes have discounts.  I was able to purchase my kit on sale for $69.99.  Then it's $99 for Dr. Mark Morningstar to generate his report and go over it with you.  SPECIAL NOTE: However, Dr. Morningstar recently announced that he would generate the report and do the phone review for a $50 donation to Ireland's Dream.  To take advantage of this opportunity one must email drmorningstar@scolismart.com and ask for him to email an invoice to you to make the contribution.  

In Part 1 of my blog I recorded the process from start to finish of me taking the 23andMe test, and highlighted some of their terms to see what's involved.


 PART 2

Here's the Step by Step instructions to submit my Raw Data File to Dr. Morningstar once receiving my results from 23andMe.  After going through these steps Dr. Morningstar's office called me to schedule a time to go over my report.  I'm told the call is about 1 hour - mine is scheduled in November.  

Step 1:  It took 40 days after mailing my kit to receive my results from 23andMe.  Once my results were ready I received an email.  I clicked on "View My Results," then it prompted me to sign into my 23andMe account.  





Step 2: Once signed in:
I clicked on the "Search" button - it's to the right of "Buy Kits".  



Step 3:  In the "Search" box I typed - "Raw Data" (as shown below), and clicked on "Download Your Raw Data".  





Step 4:  I then read the following information, scrolled to the bottom, and clicked "Submit Request".  





Step 5:  This note is then populated on the screen.  


Step 6:  Once my Raw Data File was ready (only took a matter of minutes), I received an email notification.  There was a link to click which took me to another screen to download my raw data.




Step 7:  Then I clicked on "Download Raw Data" and saved it.  As stated below, once you've downloaded your raw data, you are responsible for it's storage and security.  


Step 8:  Now I needed to get my Raw Data to Dr. Morningstar.  I emailed Dr. Morningstar (drmorningstar@scolismart.com) my Raw Data file. I included my phone number in the email. He in turn sent me an email asking me to login and sign a consent form giving the software permission to run my data file.  I also received a second email with a pin to use to register and use the Client Portal. This must be completed on a desk top computer as the site is not designed for mobile devices.


Step 9:  Once I logged into the Client Portal I Signed/Accepted the Consent Form, and logged out.




Step 10:  After Step 9 was completed I waited to be contacted by Dr. Morningstar's office to schedule my phone review of the report.  I received a call 2 days later to schedule it.  The soonest appointment was in November.

I hope this helps!  Can't wait to learn my results!


To learn about other testing and supplements available through ScoliSMART you can check out ScoliSMART Labs





ABOUT THIS BLOG & OTHER LINKS

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:

To learn about my scoliosis charity:

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com


About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!



Saturday, September 15, 2018

Perseverance Pays Off - A Look Into My Scoliosis Treatment Journey


Picture toward beginning of Treatment



Perseverance Pays Off - A Look Into My Scoliosis Treatment Journey

I was in a very gloomy place before my scoliosis treatment.  I dealt with pain, postural deformity, fear, and extreme insecurity.  My ortho doctor had told me that it was best for me to just live with my condition, and didn't offer any available treatment options.  I feared for my future, and how scoliosis would affect me as I aged.  I was extremely insecure, so wore baggie clothes to hide it and never told people that I had scoliosis!

After an emotional breakdown following a clothing shopping trip I did an online search for treatment and found ScoliosisKC, Dr. Nick Weddle (a CLEAR scoliosis doctor).  I began treatment at age 38 years old.  I proceeded with treatment with great ambition and dedication.  This was my option, my chance for change.  I knew if I did nothing I would continue to be miserable with my condition, but by fighting I had HOPE for change!  So I was "All In" to do whatever I needed to do - I'd had enough of Scoliosis controlling my life!  It was time for change!

The treatment program I did was 18 visits (3 times a week) as I was local --- there are options to do a treatment program for 1-2 weeks for those out of town.  My treatment visits were about 2 hours.  It consisted of an adjustment, vibration therapy, and exercises to correct curvature and retrain neurological control of the spine.  In addition to the in-office treatment, I did home therapies/exercises (an hour before work, and an hour after work).  After my 18 visits I chose to continue to go to the office once a week for a treatment and do my home therapy exercises. Here are a few pictures from my treatment.






Within 6 weeks of treatment the pain I was experiencing was gone.  I saw changes in my posture through treatment, but it didn't happen overnight.  There were times I had to push myself to keep going as results were not immediate.  I had days that I felt like giving up, and wondering if all of the work I was putting in was going to pay off, but I was determined!  One thing I knew for sure is if I didn't try I would have no chance to change anything -- this kept me going!  Success is reliant on the first step - if we never take it failure in inevitable.  So I pressed on, and I'm so happy I did!  If I would have given up I never would have achieved the results I did - that kind of scares me to think about! 

Here's a picture comparison 6 months into treatment, and then 1 year into treatment!

Left Pic:  6 months into treatment, Right Pic: 1 year into treatment



I continued doing the full routine of my home exercises and therapies for 2 1/2 years which again was for 2 hours a day - 1 hour in the morning and 1 hour in the evening.  I was determined to get the best possible results!!  At this point I was very happy with the results I achieved, but was interested to know the likelihood of any further correction - I was on a mission!  

Auto Response Training is one of the main components of my treatment.  The development of this exercise/therapy was led by former CLEAR doctor, now ScoliSMART doctor Brian Dovorany, so obviously I desired his thoughts on my case, and Set-up.  I visited his office in Wisconsin for a mini boot camp, and assessment.  









Dr. Dovorany was a wealth of information, and went over my case with me in detail.  He thought I still had the ability to achieve a little more correction. 

I was still super motivated to fight, but I was ready to lesson the amount of time I was doing my daily exercises.  Based on his recommendations I began doing my Auto Response Training (pictured above) twice a day for 20 minutes, of course I try to do it longer.  So now I do 40-60 minutes of exercise a day, in addition to doing treatment once a week with Dr. Nick Weddle.  Also, about 2 years after my treatment began the Scoliosis Activity Suit became a stand alone treatment for adults, so I added it to my treatment fight.



So I now focus on achieving what correction I still can, and halting future progression which is so important to me!  Before I started treatment my curve progressed 8.5 degrees in a 5 year period, which averages out to 1.7 degrees per year.  If my curve continued to progress at that same rate without treatment my curve would now be 49.3 degrees!  My curve is currently 35.8 degrees down from 42.5 degrees.  So, not only have I been able to halt progression, but also gained some correction. 

So through my treatment I've been able to eliminate my pain, improve my postural deformity, gain confidence, stop fearing for my future, and effectively fight future progression.  I will not stop fighting!  

Here's a picture of me yesterday in a swimsuit!  I would NEVER have worn a swimsuit in public before treatment, but yesterday I did with confidence!  I'm thankful everyday for how my life has changed.  It took hard work and commitment to achieve what I did - the road wasn't easy, but it was worth it all!



Perseverance paid off for me!  It changed my life, and how I live each day!  




About this Blog, and my other links:

Subscribing to this blog from your phone:  Click on "View web version" at the bottom of the blog and submit your email address at the top of the screen.

Sharing my journey at:

To learn about my scoliosis charity:

Also, I have a YouTube channel and blog called:
ScoliTalk which is interviews with scoliosis patients and doctors.  www.ScoliTalk.com


About Marce Kuhns:
I was diagnosed with scoliosis at 12 years old.  I tried wearing a hard plastic brace, but stopped due to the pain. I had no other treatment options other than to "watch and wait" to see what happened.  By my early twenties I was experiencing pain and had developed a noticeable postural deformity.  I was very self conscience, and did everything possible to hide my condition - never talking about it!  I visited several doctors throughout the years and was told it was best to just live with it.  This made me feel helpless and fearful for my future.  26 years after my diagnosis I found a rehab based treatment for scoliosis that changed my life!  It eliminated my pain, improved my postural deformity, reduced my curvature by 15 percent, gave me confidence, and eliminated my fear.  To make a statement that I would "Hide No More," I had my back painted and photographed.  This was a huge step for me! 

I began sharing my journey on facebook to spread hope and awareness The Crooked Life.  My pain became my passion! So much so that I left my job of 15 years to start working for the doctor who helped change my life to be apart of helping others with scoliosis.  In addition, my husband and I recently started a charity The Crooked Life Foundation to provide Scoliosis Activity Suits to patients who are unable to afford them.  Providing HOPE is my heart!