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)

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.

In the midst of a flare

Updates on Antibiotic therapy - switched over to brand name Minocin

Since starting the brand name Minocin about 2 weeks ago, I haven't been feeling well. Don't know if I can attribute this to a Herxheimer reaction or what? Previously, I had been on the generic form of minocycline since December 2011. With the generic I didn't really feel a herxing at all, but I did end up getting sick (not sure if it was a cold, really) at the end of December. It was a complete mixed bag of symptoms, running the gamut from muscle pain to night sweats to sinus drainage to nausea. The whole shebang. I have to admit I'm a bit skeptical as to whether or not the Mycoplasma are playing a role in my autoimmunity/symptoms. I'm trying to be very careful with attributing my symptoms to flares, herxheimer reaction, or just plain old autoimmune bullshit. I'd love to be able to admit that I am 100% sure that what I'm feeling is a herx reaction, but I honestly don't know. What I do know is that since starting the antibiotic protocol in December, I've never felt worse. Which is a good sign, I suppose.

Unfortunately, I also ran out of Plaquenil (generic) a few days after starting the Minocin, and was off the plaquenil for almost 2 weeks. In these 2 weeks I've had a increase in muscle pain all throughout my body, but mainly some severe pain in my neck (cervical vertebrae) running up the muscles through the occipital bone at the base of the skull. My left knee pain has returned, and it usually doesn't bother me at all when I'm taking Plaquenil (which is good, though, because it shows that the Plaquenil is working to some degree). In addition, the bursitis in my right hip is giving me some trouble and ibuprofen barely touches it.

Tramadol helps to take the edge off the pain, but the pain and discomfort is still there. I really don't like taking tramadol considering it acts similar to an SSRI, gives me a small headache, and I'm already on a high dose of Cymbalta (an SSNRI). I don't like to mix the two drugs together.

I have some leftover prednisone from a horrible itchy rash that I developed in 2009, and have taken it upon myself to treat my current symptoms with a small burst of low-dose prednisone, 5mg a day. The rash has appeared again, making its debut about 2 months ago (as it seems to do every year now since 2009).  The rash is mainly confined to the groin region, lower abdominal area, saving the worst of it for one of my shins. The rash doesn't respond well to hydrocortisone cream (though I continue to use it), I usually end up using an ice pack over the rash for a few minutes to dull the itchy feeling. Typical antihistamines (benadryl, etc.) don't work on these rashes, either. At night, if the rash is so bad that I can't sleep, I end up taking Atarax (Hydroxyzine). I hate to take this medication as well, because it tends to make my hypothyroid symptoms worse, and seems to linger in my system for 1-2 days following the dose making me feel like a zombie.

The pharmacy also magically filled my plaquenil. I was under the impression that the script had expired, but shiiiit, I'm not going to complain! Either way, I have plaquenil for another 60 days and started taking it again 3 days ago.

Started doing veggie juices again about 4 days ago. I try to make one a day to help with detoxing. Last night's was super salty tasting and consisted of: celery, ginger root, lemon, spinach, golden beet, and carrots.