Tanya’s Lyme Story

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My Medical History:

Headaches started October 2009 lasted 3 days so I went to my PCP as I had never had headaches before. Sent in for Head CT. Negative findings, sent to NM Pain and Spine. Treated for Occipital Neuralgia. Treated with gabapentin and 8 weeks of intense physical therapy (4x/week for 8 weeks). No improvement, symptoms worse. Injections (steroid) in the muscles in the base of the skull, headache relief for 5-7 days, then returned. Later began to persue diagnostics, skin symptoms appeared, Sent out tests for, RA, MS and Lyme.

Positive Elisa Lyme 2013. 2 weeks Doxycycline treatment, no change in symptom until day 11, decreased headaches, but came back after discontinuing the antibiotics. Then 4 weeks Doxycycline, symptoms held off longer. Then 6 weeks Doxycycline, and so on for all of 2013. Positive Western blot 2013. Developed vomiting late 2013, then developed abdominal pain, Nov 2013, discontinued Antibiotic therapy. Pursued the abdominal pain, no avail. OBGYN thinks it it interstitial cystitis and endometriosis because of the Lyme. Been refused treatment by PCPs and Infectious Disease Drs. Now here we are, weekly phone calls to the university hospital to see if they have an opening and if they will treat me, fighting with the previous PCP to have them sent me my information and the referral they already made. There is not a LLMD in my area and my PCP refusing to treat me any longer.

Note: It is likely that I contracted the disease in New Orleans, LA after hurricane Katrina (2005) doing animal rescue. Lots of ticks in the area, sleeping in tents, 2 weeks exposure. We were also in Tenessee/Kentucky running from Hurricane Rita for 2 days. Bulls-eye rash on right leg, I didn’t know about Lyme at the time, I thought it was a chemical burn from contaminated water contact in the relief zone.

My Lyme symptoms

• Headaches started 2009, primarily frontal, sometimes nausea, light sensitivity, sound sensitivity, and dizziness. NO HISTORY OF HEADACHES AS A CHILD. DX of Occipital neuralgia, TMJ, blamed on glasses, contacts, migraines, etc from 2009- present
• Severe cognitive dysfunction, memory issues, foggy feelings during the day, feelings of disconnect from the body, difficulty thinking, difficulty concentrating, increased forgetfulness (this is what is prompting this list).
• Fatigue- starting 2010
• Insomnia starting 2012, mainly at night, Tired but cannot sleep. Difficulty staying asleep, occasional difficulty falling asleep. Then difficulty waking up, feeling as if I have gotten no sleep. I rarely dream anymore, usually if I dream it is vivid and violent nightmares.
• Anxiety treated with anxiety medications from 2010-2013, now using self soothing, was in therapy for that time, Also depression.
• Pain in the feet- ongoing, unsure when started, likely 2009? Maybe before. As long as I can remember.
• Joint pain, Knees, back, neck, shoulders, primarily right, wrists, hands- as long as I can remember
• Muscle pain, Back, above the ankles, neck
• Weakness in hands, not able to open things like I used to- more noteable 2013- present
• Not able to exercise as long or as hard as I used to. I know I am out of shape, but I used to love to exercise, I ran nightly, now I can’t walk the next day if I exercise heavily, easiest exercises are yoga, walking and short Zumba for cardio but still really painful after.
• Skin sensitivity, occasional SEARING pain that feels like severe sunburn, nothing helps, Sleeping though it if I can fall asleep seems to be more manageable than being coherent for it. Human touch, shower water running onto the skin, air movement (like the air conditioner kicking on) and even clothing is horribly uncomfortable. This started Feb 2013 and is not always present.
• Neurologic symptoms of numbness or sharp, shooting, stabbing or burning pain,
• Abdominal pain for which there is not an identifiable cause- Ultrasounds, CTs, Radiographs and barium series done end 2013-2014
• Nausea and Reflux
• Craving sugars, sodas, candy frequently, even though I am trying to eat Gluten and sugar free. These cravings were present before diet trial
• Bladder symptoms of pain, urgency – started late 2013, Dx with multitude of things, protocols do not really seem to work, DXs were Interstitial Cystitis, Bladder infection, UTI
• Kidney infection, Kidney stones not seen on ultrasound. (**NOTE- Kidney stone “episodes” 2011 & 2012 as well, not seen on ultrasound, similar experiences, never found stone, maybe not really stones?)
• Uterine pain, more intense prior to the start of menstruation- Dx w Uterine infection and ovarian infection, placed on doxy but pain returned after treatments. Family history of Endometrosis, per OBG, it is likely that I also have it.
• Cold all the time, mainly feet and hands, but sweating when I wake up in the middle of the night.
• Numbness in fingers and hands after sleeping
• Feeling off balance while walking, not always, but usually will hit my shoulders or hips on the corner of the walls, increasing over time, I do not remember doing this as a child, but as far back as 2010?
• Racing heart all the time, usually HR of around 90 even when resting. BP usually normal but this increases significantly with increased pain (primarily headaches and abdominal pain)
• My body temperature is (was) usually around 97.6-98.0, however, every time it has been taken in 2014 it has been 99.0 or higher
• Itchy skin- I thought it was dry skin but no amount of water consumption or lotion helps. All over, throat, abdomen, thighs, back, ears, scalp- started Jan 2014
• increased occurrence of yeast infections vaginal as well as vaginal and rectal itching- started late
• This was brought to my attention recently but not sure if it can relate, but I have regular de ja vu experiences. To the point sometimes that makes me question my sanity. Usually every few weeks or so.





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