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)

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.

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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.

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...