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Gretchen
Moved from Groton, MA in March 2003 to Raleigh-Durham Area, NC
Was diagnosed with Fibromyalgia, CFS, Epstein Barr Virus, IBS, GERD with in 6 months prior to lyme diagnosis, a couple years before was diagnosed with Costochondritis.

Diagnosed October 2004 - Lyme (IgM equivocal, IgG Positive) , Babesiosis positive with FISH test - Whole Blood negative, and Ehrlichiosis (HGE and HME). Was tested twice through conventional labs - everything negative including coinfections - went through IgeneX and was positive for the infections above - this is ridiculously scary to me that the labs are so different...

Symptoms may have started as early as 2002, although I may never know since I do remember fighting water on the knee, knee pain, and chest pain at age 17 while on the track team...Had migraines with aura since 16 (these run in my family - 7 generations on my Father's side)

Back in January 2002 had to quit working for a few months due to extreme migraines and visual issues that resolved after a couple of months of stopping work. Had fatigue too. I had my eyes checked and went to my neurologist. This would all worsen around that time of the month. Thought this could due to the poor diet from eating out all the time, the stress, and sick building syndrome since they started remodeling the building where I worked.

December 2002 - Did a 129 mile row athon on my indoor rowing machine - Did this in three weeks Nov-Dec - felt the best I ever have. This was extremely taxing on my body though.

In Jan 2003 went hiking one day in Groton, MA and ended up in the ER unable to catch my breath...went through extensive cardiac and pulmonary tests and bloodwork for blood clots...all came back negative...had this strange breathing and rib pain/chest pain for three months than seemed to resolve.

My friends have reminded me during this time I did have strange symptoms everytime we spoke - pain in knee.

In March 2003 took a new job. Was on my feet all day. I started having hip pain. Blamed it on my shoes.

In August 2003 went to Nantucket. Had a bout of double vision and neuromuscular issues for 4 hours - thought it was because I took and ibuprofen and then four hours later took an acetamenaphin product - found out later from a pharmacist if I took them that far apart not the meds. I am certain now I was bitten here.

After this trip had severe back pain in the morning upon waking - I would wake up and could hardly roll over but then I would get moving and it would improve. Started having extreme sensitivity to light but chalked up to Migraines. Started to prepare for teh move in Sept. 2003 - lots of stress.

Moved March 18th 2004. I got my period that day - the heaviest flow I had in a long time - chalked it up to stress. There were ticks everywhere this Spring where we live. My dog got sick with an autoimmune disease the third week of April. This was after multiple tick bites. I have now found an article tieing babesiosis with it. I then got sick the weekend of May 16th - my anniversary. We went away to the beach and on Sunday I got out of the car and almost passed out. I got this feeling like I was being electrocuted. Thought it was low blood sugar...went to get a snack - walked into the store and felt total disassociation. From that day on now these symptoms:

-Lower Left quadrant pain
-Then all over digestive tract pain
-Extreme IBS symptoms for three weeks - mucous, diarreah alt. constipation - pain would wake me up at 4 a.m.
-hemmroids (never had these)
-Low Body Temperature
-Low Blood Pressure
-Nausea
-Lost 15 lbs. in three weeks
-Loss of Appetite
-Severe dizziness - would wash over me at least 5 times a day and felt like I was going to pass out.
-Vertigo
-Insomnia though exhausted (CNS buzzing, restless legs)
-Legs bruising
-Wandering little rash that was like little chigger bites (little red dots)
-Extreme neck and back pain
-Heart Palpitations and Extreme Chest Pain (especially morning)
-Heart Thumping
-Exercise Intolerance
-Intolerance to Alcohol and Caffeine
-Cold Shakes and Sweats - will get this sudden energy boost - will break out in a sweat from head to toe then get freezing cold and shake - this has happened after a massage, running, and drinking caffeine...weird!
-Visual Issues - extreme light sensitivity - eyes don't adjust to light or dark quickly - Floaters - periferal vision every now and then shadows
-Menstrual cycles not regular, flow extremely heavy
-Sometimes not hungry, sometimes ravenous
-Moody, Depressed at times
-Short term Memory Loss
-Severe Migraines with Aura
-Feelings of Panic
-Feel like swallowing was difficult sometimes
-Extreme muscle fatigue and heaviness especially in thighs and back of legs, it is like sciatica - starts literally at the center of my rear and then radiates down the left leg - comes and goes day to day - then my arms became heavy later
-Hair Loss
-Pain in Feet
-Extreme Fatigue
-Muscle Spasms of the Eyes
-Numbness - Butt and lower back
-Varicose Veins in legs
-Veins protruded in Arms especially when exercising
-Urinary Tract Pain - feeling like urine is being lost from the bladder but internally - very strange sensation
-Extreme Muscle Pain
-Extreme Startle reflex
-Muscle Twitches - shoulder, legs, and biceps.
-Brain Fogginess
-Extreme Adrenal Fatigue - didn't have enough energy to even get stressed about anything.

Ok - I might be forgetting some - good grief that is a long list.

I did a Doxycycline trial on my own back in August - herxed big time - ended up in the ER thinking I was having a heart attack...experienced parathesis in my right arm. Thought I was having a stroke.

Cipro and Flagyl for two weeks end of October before starting official treatment - this was for bacterial growth in stomach.

November 1st - started treatment - Orals - Zithromax 500 mg and 2 TBS. of Mepron a day for Babesia -
December 1st - Zithromax 750 mg and 200 mg Minocin for three weeks
This week - One week of Flagyl by itself
January 1st - I will start Septra (can't remember how much - I think 1000mg a day) with 200 mg Minocin for three weeks then Flagyl the last week by itself.

I am getting better slowly but surely. The dizziness and heart palps are virtually gone. Joint Pain has gotten worse with treatment, foggy brain has gotten a lot worse with treatment - part of herxing.
I'm embarrassed at how long this has turned out to be. Skip the doctor's appt's unless you have insomnia or extreme curiosity.. I reversed original order and they are at BOTTOM so you don't have to wade through them if you don't choose to.

Probably bitten in North Texas but numerous tick bites over the years and
quite a bit of travel/camping/backpacking, etc.

Diagnosed in late Jan. '05 and put on oral amoxycillin, single dose 3000mg daily.

From original order of post: [I]In hindsight, I became ridiculously symptomatic in late ’04. Starting questioning my own self – hypochondriac?? But I FELT horrible which strange symptoms popping up all over the place and seemingly so unrelated. [/I]
[I]I now wonder if constant use of steroids kept my immune system suppressed or ? just enough to hold off lyme or lyme symptoms?? [/I]

Late ’04 was the beginning symptoms that I couldn't ignore.

· Oct. ’04, new GP was SURE I had gallstones. Cat scan showed clear GB. Put on Prilosec, etc which took care of symptoms. Esophagus area began feeling tight/constricted, giving me the sense that I needed to massage it, help it relax but nothing really helped. Sensation a large air bubble underneath left rib cage that was very uncomfortable and came in waves - like contractions come. Hard to swallow; nausea with pain.

· I lost my appetite during this time for a few weeks that is absolutely the most contrary experience to my normal day-to-day existence you can imagine. Food has ALWAYS been an issue for me. Lost 10 – 12 lbs. over 10 days.

· My head/neck/shoulders began to have a constant ache, drawn up feeling and pain that reminded me of when I knew an infection was coming on.

· Heart palps, swollen (arthritis) bone at sternum, ribs/chest wall/shoulder blades became very sore with other ‘moving’ sore/tender spots around trunk area. Occasional labored breathing when sitting still.

· Area under right arm pit very tender/sore and moving towards right breast. Feels like lymph nodes.

· Entire upper right arm and shoulder have since become very sore and weak with limited mobility. Arm socket pops when I do use it.

· Hands have become very sensitive to bone pain in the night. I wake and need to straighten them because either the wrists or fingers hurt due to position I have them in while sleeping. Same with right shoulder. I wake with it aching either because I have my arm stretched over my head or I'm lying on that side.

· Low back pain is increased at night – some feels muscular/skeletal and some feels clearly more organ related. Need to urinate in night increased.

· Difficulty thinking, word retrieval, increased memory problems, depression – different from my ‘normal stuff’. Strange dreams, altered sleep,

· Ringing in right ear; intermittent sensitivity to noise, intermittent vision fogginess, eye pressure; have had floater for some time as well.

· Spatial perception became skewed as well as balance/coordination and reactions to visual stimulus, like when driving.

· Two very scary, strange bouts of ‘weightedness’ where I felt like bricks were on me though I was sitting. I felt like there was something over me pressing down on me and all I could do was just sit it out. Both were very short.

· Left eyelid seemed to loose some elasticity over night.

· Occasionally, when lying in bed at night, I feel like I'm plugged in to something. Like I'm buzzing. This week, while herxing, notice that during day as well. Like a low-key vibrator is on.

Doc that saw me for GB definitely thought I was lulu and then I sought out another GP that I’d was a GP for local lyme patient and heard he might be open to working with Bedford LLMD. He told me I had eczema, wanted me to take an entire dosepak of steroids in one day, and swore I’d be well for Turkey day and that I needed to stay on my Zoloft!

After seeing these two docs and knowing I wasn’t imagining my symptoms, I heeded Ticker’s advice and got in to see an LLMD and requested Igenex lab testing. In hindsight, thank goodness Ticker informs about the use of a good lab, because although the doc I chose is touted as a LLMD, she minimized my symptoms as well, and turned out to be a very mean, uncaring doc who I’ve since heard of worse horror stories than the way she treated me. So, THANKS TICKER, for leading me in the right direction for getting a timely diagnosis and beginning treatment.

Much of the above symptoms are already decreased, especially the highly annoying, depressing and CONSTANT head/neck/shoulder pain! I’m herxing right now and symptoms are back which simply reminds me of gratitude that I’ve already come this far.

********************
I’ve listed some of my symptoms before but after getting a copy of my records from my GP, I went back and listed appt’s since late 2000 and now wonder if appts. back then weren’t early lyme related stuff. Don’t know.

No more visits with GP until late ’04, (AFTER getting sick and tired of using gels/cremes to no avail which I think is very interesting).
4 visits in Oct. ’00 in reference to same bug.

· 10-2-00 Repeated visits to doc for flu-like symptoms; complaints: lower back pain, body aches, right ear pain, sore throat. Viral Pharyngitis
· 10-17-2000 – chest congestion; head/ears stopped up; decreased taste, hearing, smell; green mucous from nasal and chest. Chest wall hurts; wheezing. Bronchitis/Sinusitis – Bactrim/Flovent Rx’d.
· 10-31-2000 – still sick. Headache, neck pain; day before; dizzy, wheezing, out of breath. Productive cough. Large, swollen mass on neck – painful to the touch. Rx’d Augmentin and come back on Monday?
· 11-3-2000 – ears cracked a lot. Less tenderness to neck and shrinkage. Apparently some time after this appt. I reported rash on stomach to augmentin. Was this really a herx???

· 2-7-2001 – Pain in sternum area. Reported waking in night with much burping. Increased pain/pressure that builds up; starts in epigastric area and goes up into her mid esophagus. After swallowing, feels pressure. Liquids and food worsen it. No family history of gall bladder disease. Started on Prilosec. (I have no recollection of seeing doc for these symptoms back this far).
· 4-4-01 Knot on upper right arm that I reported had existed for 5 years. Said it had possibly grown in size. Lump has a bluish tint to it. Doc notes that mass is ‘now getting large and has some discoloration to it’. I’d like to refer her to a surgeon as it way too large for me to be poking around in it. (smaller than a quarter) Most likely a lipoma but possibly something else and bothering her now.
· 4-17-01 – Physical. 1st pap came back irregular.
· 5-21-01 –Poison ivy; Some type of steroid dose pack rx’d. Notations of ‘other rash’.
· 5-31-2001 Poison Ivy in eyes. Prednisone;zyrtec; zantac
No visits in ’02 However, in Dec. ’02 began experiencing frequent numbness/tingling in fingers/toes and sometimes more entire hands/feet.
· 1-02-03 - Very large ringed rash appeared on upper left thigh. Continued to spread outward (fyi - this is the only rash that has gone away.) Rest are still lingering in ’05 and have spread to stomach, back, legs, in smaller circles and less defined rashes. Doc noted on/off steroid use over last year. Did shave biopsy. GP biopsied and it came back benign as ‘early Seborrheic Keratosis’. Ran blood work as well.
· 1-9-2003 – Still has irregular rash ; 4” in diam. Round, red rash with some central clearing. Try her on Diprolene Gel. After several months of no results, referred to dermatologist.
· 4-4-03 – Yearly exam.
· 9-17-03 Dermatology report from punch biopsies: Clinical data: Granuloma annulare vs. Erythema annulare. Determined that rashes on upper left thigh and left elbow were consistent with Granuloma Annulare. On very potent steroid gels for a year.





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