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

It's been awhile

So, since I last posted I had my blood sent to Fry labs in Arizona. Doc had thought I had Bartonella this whole time, along with Lyme.

Positive antibodies for Anaplasma. Perhaps this explains my low WBC, anemia (low RBC) not iron-deficient, low platelets, which are apparently the usual findings in blood work for someone with Ehrlichia or Anaplasma.

Substantial biofilm communities were also found in my blood. Finally getting some answers or a direction on where to go with treatment is a great feeling.

No new bloodwork since June or July due to lack of insurance, etc.

Food allergy test results back show a ridiculous amount of allergies. Kind of surprised. However, not many of the allergies are from things that I frequently (or ever) eat. As suspected, I am VERY allergic to coffee and still showing high reactivity to YEAST. What was surprising are my allergies to things like cauliflower, watermelon, all citrus fruits, carrots, squash... 

Brief stint of Nystatin in December. Will continue to take Nystatin as needed for yeast/fungal issues. 

Introduced Doxycycline in December. I really cannot tolerate these antibiotics! In terms of nausea. Seriously. I don't vomit while on the abx but the nausea is so severe even at the low dose of 100mg. 

Next step is to introduce Malarone, an anti-protozoal/anti-malarial drug. I've been on Plaquenil for so long (about 4 years) and do believe it helped me. However, I would love to give something else a try seeing as how I'm still battling these bugs even after being on the Plaquenil for so long.

--
I last saw the doctor in December. Through my own research I started Artemisinin and Lumbrokinase and Nattokinase (biofilm busters) in January. Cymbalta dosage has also been reduced to 40mg. I'm alternating the Lumbrokinase and Nattokinase every other day. Have yet to work my way up to my daily goal of 500mg of Artemisinin. I am rotating that out every 7 days to avoid resistance. I've been on pain meds the past few months, so as far as any herxing goes, it would be hard to tell. Though, lately, I have been having bouts of low-grade fevers and hot/cold flashes. Could be some herxing there. 

I don't think I gave Flagyl a fair trial this past fall, so I've restarted it. Starting at 250mg a day, would like to quickly work up to 500mg a day. Since my desire to take Flagyl was the reason for quitting the Plaquenil... I need to give it another go. 

As for clean-up agents, I've added chlorella tablets as well as vitamin C powder (1,000mg/day). Still continuing with D-Ribose powder for muscle pain. Switched multivitamin from New Chapter to Country Life.

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...

Off the Prednisone

Have now been off prednisone for about 1 week. My shin rash is slowly diminishing. I started taking 500mg of Taurine at night before bed and it seems to have helped my muscle pain significantly.

Stopped by the community health center last week for an ophthalmologist appointment. Eye dryness is minor said the doc after using the yellow dye. So that's good news. 


Continuing to take Zithromax though only about once a week because it does quite a number on my stomach. It has a long half-life, though, so dosing every other day shouldn't really be necessary. 


Lyme test results came back as "equivocal", so am now supposed to be getting tested for band 31 kDa. The journey continues...

The persistent rash...

My rash was gone. Then it came back. Story of my life, honestly. Hahaha. When I drop below 2.5-3 mg prednisone, the rash on my shin returns with a vengeance. I'm really not even supposed to be on prednisone right now (meaning, my current doctor did not prescribe it for me, it's just leftover from 2009 treating myself Dr. Ashley style. Yes, I know you aren't supposed to mess around with prednisone. Yes, I'm aware of the dangers.). I don't have insurance and cannot afford to go see the doc whenever this rash rears its ugly head.

Anyways, I've read extensively about the link between thyroid antibodies and rashes and the connection is clear. When I see the doc next I might see what he thinks about treating euthyroid Hashimoto's. Not many docs are keen on the idea but it's worth a shot. I'm thinking... lowest dose of Armour thyroid, which is a combination of T4 and T3.