Symptoms over the years...

I thought it might be interesting to share with you all the symptoms I have had over the years. I will attempt to list them in chronological order, just for funsies,to see how my disease(s) has progressed.

Symptoms

Cold hands and feet

Fatigue (last year or so of college I was missing classes so I could sleep)

Swollen lymph nodes (mostly in neck, but groin area too)

Lymph node biopsy in 2007 – negative for cancer (people with Sjogren's Syndrome are at a higher risk for getting lymphoma, very important to get any swollen nodes checked out)

Sleeping 12-14 hours a night, continues to this day, requiring 2 hour nap during daytime 

Ringing in ears, buzzing

Trouble finding the words I want to say, word recall/retrieval

Short term memory problems

Cold hands and feet, Raynaud’s diagnosis/poor circulation

Muscle pain and tightness

Fibromyalgia

Tingling on left side of face, near nose

Tingling on left side of scalp

Joint pain, NOT bilateral (which is usually an indicator of Rheum. Arthritis)

Exhaustion/fatigue

Hair loss

Floaters in eyes, blurry sight, eyes sensitive to light

Dx'ed with Hypermobility (joints bend too far, collagen/cartilage problems)

Dx'ed with early-onset Osteoarthritis in knees, at age 24!

2009 – diagnosed with Sjogren’s syndrome

Heart palpitations, Mitral Valve Prolapse (MVP) diagnosis – 2009

Macrocytic anemia (NOT due to lack of Iron in diet)

Hives all over body, April 2009

Periodic itchy rashes all over body, requiring prednisone multiple times

Dec. 2010 – MRA and MRI negative. Continue to be at a loss (haha, nice pun!) for word retrieval issues, along with concentration and cognitive problems. 

Reduced ability to concentrate, diagnosed with adult onset ADD, though I've always gotten good grades in school

Abdominal pain on left side

Lower left quadrant intestinal pain

Decrease in appetite, hard to get over 1,000 calories/day

Multiple food allergies, currently on very restricted diet (gluten free, dairy free, soy free, blah blah blah)

May 2011 – 2^nd surgery for ovarian cysts/Endometriosis

Sensitivity to light and sounds (need to wear ear plugs if there are dishes being put away or blenders being used)

Sensitivity to smells (headaches, nauseous from smells of cleaning supplies)

Air “hunger” symptoms start after moving to Chicago in 2011, continue to present day

Major depression and anxiety

2011 – diagnosed with Hypothyroidism (Hashimoto’s autoimmune)

Sharp abdominal pain on sneezing or coughing, probably due to persistent ovarian cysts

2011 - saw new doc in Chicago, bloodwork shows Mycoplasma infection and high Strep titers, Igenex testing, started antibiotic therapy Dec.2011

2012 – blood smears via Dr. Fry labs shows Protomyxzoa rheumatica infection with substantial amounts of Biofilm, Anaplasma antibodies detected as well

recent symptoms, started summer/fall 2013

Bladder irritability, painful urination (NOT due to a UTI)

Methylation cycle and genetic testing

Wow... it has been awhile! I spent the summer moving from Chicago back home to live with my father in Michigan. Since I'm unemployed due to my chronic health issues, financing my supplement addiction has been a real problem ;)
Though my boyfriend had a job in Chicago, it still wasn't enough to keep us financially afloat.

I started seeing a new Naturopathic doctor here in Michigan. She mentioned something about methylation cycle problems, which I had read a little about before but never really gave it a second thought. Some of you may have recently come across information about genetic mutations and their relation to something called the Methylation Cycle. Thanks to recent advancements in genetic testing, as well as accessibility to that testing, finding this kind of information about your genome is easier than ever. The testing is relatively affordable, depending on where you get it done (Quest labs vs. 23andme.com).

Basically, if you have certain genetic mutations, your body has a difficult time converting folic acid/folate into its usable (or “active”) form. But make no mistake; a difficulty in processing a simple B vitamin (folate) can lead to an alarming number of health issues. Theses issues include elevated homocysteine levels, a functional B12 deficiency, immune system dysfunction, energy production problems, chronic fatigue syndrome (CFS), problems eliminating toxins from the body, and even issues with neurotransmitter production (like low dopamine). As you can see, the methylation cycle reaches far and wide. For those of you treating chronic viral or bacterial infections, such as Lyme disease of Epstein-Barr Virus (EBV), and are finding that you are still sick or maybe even getting worse, finding out if you have methylation cycle mutations is crucial in order for treatments to work. Removing the blockage within the cycle might just be the missing piece to the puzzle.

As it turns out, I am heterozygous for a mutation in one of the MTHFR genes, A1298C. I got that testing done through Quest labs, and it also tested for the other well-known MTHFR gene, C677T (which I do NOT have the mutation for). There is still relatively little known about the function and relevance of the A1298C mutation. Some health professionals feel that a heterozygous mutation in the A1298C gene doesn’t result in any significant impacts to the functioning of the methylation cycle, while others believe that the mutation does indeed effect the cycle.

After getting my results for those two gene mutations, I was hooked! I did more research and discovered that there are more mutations that can impact this cycle. So I went ahead and ordered more comprehensive genetic testing through 23andme. I got the test for a mere $99.00, which is a great deal seeing as how they report on thousands of your genes as well as ancestry information.

The 23andme.com testing turned out to be very beneficial. I discovered that I have some mutations that need to be addressed first (prior to addressing the two mutations mentioned earlier) in order for my body to properly detox. This may explain why I felt so horrible when taking antibiotics. 

Anyways, below you will find my treatment plan. If you are interested in finding out more about the methylation cycle and associated genetic mutations, check out Dr. Amy Yasko's website. She has done a ton of research on this topic (and its relation to autism), which you can check out here.

 Dr. Ben Lynch is also extremely knowledgeable in this area and has been a great resource for MTHFR information as well.

It's amazing that ust one genetic mutation could throw this whole methylation system out off kilter, and ultimately, our bodily systems.

So currently, my supplement regimen goes something like this:

• SHMT spray - 5x/day - treats SHMT mutation, I am heterozygous for this first-priority mutation according to Dr. Yasko. She states that SHMT and CBS mutations need to be dealt with first before adding in the active form of folate. 
• BeCalm Spray - working up to 6x/day - helps to lower elevated glutamate levels, and provides low dose of Lithium (which is crucial for transporting B12 in the body)
• Resveratrol spray - also helps to reduce glutamate levels and provides  some antioxidant support
• Yasko's new All-in-One multi - trying to work up to taking one of these everyday, I've had to go low-and-slow with all of the supplements I add in because my system is so over-reactive. I had tried her old formula of multivitamin and could not take it even in half-tablet doses because it was causing me detox symptoms. This new formula is better tolerated.
• Klaire Labs probiotic, and Vital Zymes chewable enzymes, 1/2tab.
• Thorne Research Bio-Gest, contains Ox Bile, helps digestion and has brought the "half-moons" back into my nail beds
• Grape Seed Extract - for "short cut" support of methylation cycle, according to Yasko
• Vit. A,C,D,E
• Mag. malate, herbal calcium, other general support

Recent new symptoms: Right eye twitching, return of tingly scalp sensations on left side

Off antibiotics for now, testing coinfections

Well, started thyroid meds 2 weeks ago. NatureThroid brand, 1/4 grain. Can't say I see any effects yet. I may even feel worse? Hard to tell if it's the thyroid meds or it's being off antibiotics for first time in 8 or 9 months.

Have been off antibiotics for at least 3 weeks now. Plan is to shell out some hefty amounts of cash for a co-infection panel through Fry labs, which will also include a blood smear and IFA testing.

Since being off Ab, increased floaters in eyes and general eye irritation. Mainly left eye. Buzzing/numbness/vibration feeling in left foot. Kind of a pulsing feeling.

Lyme and what to do now...

Received Igenex results a few weeks ago. Appear to be equivocal. Have tested positive for one double-starred band, and one non-starred band (58). My doctor has decided that we will continue to treat this as Lyme disease. I'm still on minocin and zithromax, and doc wanted to add in Flagyl (cyst buster).

Now, I had read that nerve damage is a rare side effect of taking Flagyl, and also that it may interact with Plaquenil. So... long story short - I've quit the Plaquenil.

While waiting for the plaquenil to clear out of my system (has a long half-life of about 1-2 months), I've decided to start the Byron White formulas. I purchased the A-L formula and the A-BART (bartonella). Will start the A-Bart formula first, try it for a few weeks to get a feel for it, then add the A-L.

Quick recap of current supplements/medications:

• Minocycline, 200mg, every other day (started December 2011)
• Zithromax, 250mg, every other day (on days not taking minocin), since May 2012
• Banyan Botanicals ayurvedic herbs - Healthy Vata
• Cymbalta, 60mg
• Night: melatonin (small amount, less than .5mg), L-Glycine, GABA, L-Glutamine, Magnesium malate
• Buffered Vitamin C (with rutin), Vitamin D3, Malic Acid, D-Ribose, Multivitamin, Calcium citrate, the list goes on...

Medrol pack

Stopped by the doctor's office yesterday to pick up Zithromax that had come in from the patient assistance program. So that's great news. 

In not-so-great news I am currently starting a Medrol pack to reduce inflammation and get rid of the multiple spots of itchy hives that are just begging to spread like wildfire. 

Shin rash

I need to get this flare under control before I can even think about starting up the Zithromax. Though I did test high for strep antibodies (as well as the mycoplasma, obviously), I've read that you should be treating the strep antibodies either before or at the same time as mycoplasma. 


My History:

I was diagnosed with Sjögren's syndrome (in addition to Fibromyalgia) in November of 2007. I had never heard of Sjogren's before, and wasn't even going to attempt its pronunciation. 

I believe my immune problems started way back in the day when I came down with mono in the 5th grade, and then had a recurrence of it in 7th grade... and then after that I whenever I started to feel crappy again it was simply assumed to be associated with past bouts of mono. I never was the same after that. 

Many years after the mono business, while in college, I was referred to a rheumatologist - Dr.Carol Beals in Lansing, MI - whom I no longer see, unfortunately, because she is a wonderful, intelligent, and caring doctor. I saw her for 3 years and then had to stop due to my lack of health insurance. 

Bloodwork done by Dr. Beals showed that I had been exposed to Parvovirus B19 at some point in my life. The parvovirus exposure, in addition to the mononucleosis, most likely led to my increased sensitivity to autoimmune problems. The fact that my maternal grandmother had lupus (and died of complications due to it) was not helping my genetic case any. 

My initial symptoms were overwhelming fatigue, joint paint (mainly my knees and hips), trouble concentrating, problems with word retrieval, loss of hair, muscle pain, depression, and horribly itchy skin rashes. I was started on 400mg of Plaquenil in summer of 2008, and continue to take it without (many) problems. My skin rashes are a bit worse on the Plaquenil, an overall increase in skin sensitivity, but I do believe that the Plaquenil helps with fatigue and joint pain. So... I took the trade-off and keep a tube of hydrocortisone cream with me at all times and steroid cream for the tough times. 

In 2009, I had a lymph node removed in my neck due to enlargement and an oncologist's suspicions. It was not cancerous! Many people with Sjogren's syndrome are at a significantly increased risk for Lymphoma.

December 2010: Thyroid antibodies detected. Anti-thyroid peroxidase (TPO) to be exact. I also had my DHEA-S levels tested (serum and saliva), and were found to be low. 

May 2011: I had my second Laparoscopic surgery for ovarian cysts/endometriosis. Of course, after the surgery I was told to take hormonal birth control pills to control the endometriosis, which tends to worsen my Sjogren's symptoms (and I don't really believe in taking synthetic hormones). I feel that you need to find the root cause of the hormone imbalance, and fix that. Most doctors  are "glorified drug-dealers", and would rather throw some pills your way than to investigate symptoms in order to find a root cause because that would be expensive for insurance companies. And would actually require some effort. But I digress. 

Nov. 2011:

Had blood work done for food allergy detection. The delayed sort of allergy, that is. Which tests for IgG antibodies versus the IgE ones which are typically the result of an immediate allergic reaction. Allergy testing results show that I have an allergy to Baker's yeast and Brewer's yeast, which I had already suspected. This also means no vinegar, miso, mustard, ketchup, etc. Mild reactivity to bananas, peanuts, eggs, oats, soy, and oranges. I've switched out my peanut butter for sunbutter (made with sunflower seeds), and am now eating Perky's crunchy flax cereal for breakfast instead of my usual granola. 

Dec. 2011:
Seeing a new doctor here in Chicago and was tested for mycoplasma antibodies, which are thought to be linked to autoimmune diseases (mainly rheumatoid arthritis). Tested positive forMycoplasma pneumoniae antibodies and elevated strep antibodies. Started 200mg minocycline every day and will continue low dose antibiotic therapy for at least the next 6 months. For more information on autoimmune disease and mycoplasma infection, check out this site: rheumatic.org

Supplements added to regimen: Banyan Botanicals Healthy Vata, L-Methionine, L-Glycine, GABA, 7-keto-DHEA 25mg. 

April 2012: 
I just got the results back from my saliva testing (via snail mail) through ZRT labs, and results show that I have some issues with the rhythm of my cortisol levels. I suspected this, along with the thyroid problems/symptoms (which are still going untreated). High-normal "morning" cortisol levels, which drop sharply by "noon", only to rise again (abnormal) for "afternoon" and "evening" times, which explains why I need to take sleepy time supplements in order to fall asleep at night. And even then I don't get to sleep until around 2am. 

Medication switch: from generic to brand name Minocin