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Lyme Disease Message Board


Lyme Disease Board Index


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.
Stacey, Charlotte Hall, Maryland - Age 38
Infected 1993. I was diagnosed with ring worm that year by my internist. Funny thing is the only reason I had that rash checked out is because the nurse at work told me to go to the doctor because it looked like it was from a tick. Nope he said ring worm and he was the doctor. I got a copy of my medical records last year and my chart says possible ring worm. All my problems started shortly after that rash...

In the beginning it was the fatigue, numbness, constant sinus infections that put me down for 2, 3 days to a week, and bouts of shaking, out of it feelings. Sometimes they diagnosed viral infections and that was the diagnosis the time I could not walk. I was also having ringing in my ears, high pitch sounds and cracking, musical/audio hallucinations, shooting pains, jaw pain, skipped heartbeats, rib cage soreness, other pain that came and went, knee pain, brain fog, insomnia, balance problems, head pressure, shooting pains in eyes, and my face was started breaking out and very sensitive...

I could actually feel the sinus infections coming on and after numerous visits to my internist decided to just take amoxy when I felt like I was getting sick. My doctor never really understood how bad I felt when this stuff happened so I decided to save myself the doctor fee since my mom always had amoxy on hand in case the farm animals needed it. This probably did help keep the lyme at bay some what and doctors would have never figured it out anyway. Although I should have long before I did especially since I lost my horse to lyme in 1992.

My symptoms continued but were manageable. They were gradually getting worse and in 1999 we started looking for property. We took many walks in the woods and I could barely make those walks… The breathing problems had started and I was so, so tired.

By 2000 we had started construction on our new home and my husband and I played general contractor. I was not well and literally could not help with the manual labor which was not me. I kept thinking I was so out of shape… At times I would think it was something environmental or the new vitamins or maybe I was allergic to alcohol. I also could not stand the smell of perfume or anything chemical.

The chest pain/breathing problems were worse and I now had nausea that came and went, my legs hurt, neck pain, rashes, head pressure... I once again visited the emergency room that fall because my internist thought the worst when I was having numbness in my left arm, chest pain and high blood pressure... I was so used to this that I would have not made the ER visit but my periodonist was very concerned about my high blood pressure and advised me to call my doctor as soon as I got back to work. Needless to say I was diagnosed with yet another viral infection. I swore no more doctors or ER visits that I would just deal with it and I did.

By 2002 I felt like death warmed over. My legs never quit hurting, my neck stung/hurt badly and I kept thinking it was from looking at the computer screen wrong. My cheeks and face hurt, I was missing much more work and my teeth hurt. I felt like I had a constant hangover. I was weak, my shoulders hurt, stiffness, legs shook, left arm would go totally numb at night, my hands hurt and I could not even squeeze a windex bottle.

My ankles hurt, the pressure never let up in my head. That summer I had a really bad case of poison and was given prednisone for two weeks. Shortly after things got even worse. I do not know if it was the prednisone or a coincidence but I started having problems with ovarian cysts rupturing. I was told my nausea and leg pain was due to the cysts but my doctor never understood why I had pelvic pain but other wise I was told I was perfectly healthy.

By early 2003 I had started researching MS, cancer... you know the routine. The ovaries were still a problem. I became a lifetime movie junkie and could only clean house during the commercials because I was so weak. My husband once told me he was tired of seeing me watch ***** flicks every weekend. I could not stand in line at the grocery store much less carry the groceries in. I was so afraid that I would die before I ever knew what was wrong.

I still had all of the prior symptoms but they were more severe. I had problems swallowing; my muscles twitched like fireworks were exploding in my body. My heart raced, I could barely lift a small pot of water, the front of my neck had a weird bruise that stung, and I felt like worms were crawling in my forehead along with the constant shooting pains that I thought would kill me. My head felt swollen, it felt like bees were flying in my ankles, felt like things were crawling on my body and sometimes like I had run into a cob web. I felt like I would pass out even sitting down. I had a hard time holding my head up to watch TV. I would have to take a break from doing simple things like the dishes. I noticed I constantly sighed.

My neck felt like it had an electrical charge with the pain, breast pain and bruising, bruising on front of lower legs, I was too weak to blow dry hair, my gait felt different and my legs felt really weird like rubbery, the bottom of feet hurt, twitching in my head, constant nausea, and ovarian problems continued with pain plus weird noises. I had burning sensations in my legs, total terrible body ache at times, weird non healing areas which I never scratched or hurt. Shooting pains in fingers, numbness worse in feet, hands, big toe… I felt like there were short circuits in my head, my arms jerked, the brain fog was so bad I was afraid to drive... basically my mind was shot... and I now know that my central nervous system was being attacked.

My husband kept telling me to go back to the doctor. For what… I kept researching. Then in June 2004 our friend called because his dog was sick. I knew right away Scrappy had lyme as my dog was infected in 2001 and never the same. Our friend called back that evening to tell me I Scrappy did have lyme. That very moment a light bulb went off in my head. How stupid of me to never think of lyme.

My extensive research began and I knew without a doubt I was infected. I made an appointment with my internist knowing full well he would think I was crazy. He tested me using the Elisa and ran other blood work. I remember him saying just before he left the room “are you sure it is not depression – again”… I also now know it was lyme causing this and do not think an internist has any business diagnosing a patient and administering antidepressants.

Anyway, naturally the Elisa was negative but my blood sugar was high. The doc thought I was a diabetic and told me my symptoms were too wide spread for it to possibly be lyme. My glucose stuff was normal so I requested a Western Blot which was also negative. He then called his neuro friend and made an appointment for the following Monday. In the meantime I had found an LLMD in Washington DC and was lucky to only wait 2 weeks.

My doctor called just prior to my LLMD appointment to tell me they found nothing but the neuro thought I may have some rare, rare disease but he doubted it. I can’t remember the name of the disease. Anyway they wanted me to pick up some urine bottles and the next time my heart raced to give them a urine sample… I never picked up those bottles and actually could have given him a sample right then and there because my heart never quit racing.

In mid July I saw the LLMD and he told me my first visit there is no doubt I have lyme and he was pretty darn sure I have Babesiosis. He was right on the money as I finally tested positive through Igenex for lyme and Babesia. I ended up having Bartonella Henselae too. We later learned that our other dog is also infected with Bartonella Henselae. We lost our older girl to lyme in August 04 and our other girl is still having problems with lyme.

I also knew without a doubt that my mother has lyme. I can’t count the number of times I called her when something happened that scarred me and she would say “Yes, I get that - it must be normal”. It took me a year to get her to our LLMD but she was finally diagnosed in August 04 and doing much better. My husband tested equivocal and was treated for 3 months. I seem to have a resistant case of Babesiosis and the Bartonella is still kicking my butt. However, I am doing much better than I was a year ago and will beat this.

July 03 - started doxy for lyme and waiting for test results

August 03 - Started Babesia treatment Mepron and zithromax

November 04 - added artemisinin for babesia

January 04 - Felt pretty darn good so we started hitting the others with ceftin, biaxon and continued artemisinin.

April 04 - Babesia back resumed mepron, zithromax, continued artemisinin

October 04 - Babesia/Bartonella still a problem changed from zithromax to Ketek continued mepron and artemisinin

December 04 - Increased mepron to 3 tsp per day, continue ketek and artemisinin, added flagyl and bactrim (sp). The protocal is 10 days of mepron, ketek, flagyl, artemisinin. Then 10 days of mepron, ketek and artemisinin. Then 10 days of bactrim and repeat protocal.





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