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Lyme Disease Message Board


Lyme Disease Board Index


Updated 11/29/2005

Location: So Calif
Age 29

Onset of symptoms: August 2003
1. Bells Palsy Bi Later 8/03
2. Carpol and olander (sp?) nerve damage in both hands/arms 9/03
3. Interstital Cystitcs (IC) of the bladder 11/2003
4. Lower back pain
5. Sleeping problems
6. Chest pain, discomfort
7. Dizziness
8. Fatigue (dx with FM 10/04)
9. Hair loss
10. Low Blood Pressure
11. Dry mouth/ soar throat
12. Brain fog
12. Joint Muscle pain
13. low body temp

Tests:
MRI
CAT Scan
Hearing test
ELIZA positive 8/2003
Western Blot 10/2004 (panel 41 + with unilab)
Igenex WB + IGG and IGM
co infections - negative

Lyme meds previously taken :
Doxy 400mg (12/4/2005) to 4-4-2005)
Zithromax 500mg (2/1/2005 to 3/10/2005)
Plaquineil (2/1/2005 to 3/10/2005)
Omnicerf 600mg (2/22/2005 to 3/10/2005)
Minocycline 300mg (4/4/2005 to 8-8-2005)
Zithromax 500mg (5/1/2005 to 8/10/2005)
Plaquineil (5/1/2005 to 8/10/2005)
Tequin (8/2005 30 days)
Biaxin (9/2005 30 days)
Diflucan (11/2005 20 days)
Doxy 400mg (11/23/2005 to current)
Coptis

Medications Currently taking:
elmiron (IC)
Dectrol (IC)
Toporal (heart)
Asprin 325mg (heart)
Plavix (heart)

Also take:
20 billion acidolophous
Magnisum
B12
Garlic
Aleo Vera
coptis (lyme)

Diagnosis of Lyme by my infectious disease doctor: 11/2004
Diagnosis of Lyme by my LLMD: 12/2004

Lyme Treatment: ABX & Herbs (coptis)

Current status: back on doxy after transcathedar procedure to close hole in ASD. I did a 20 day trail of diflucan in hopes for some results, had to go off of diflucan due to surgery...
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.
Location: Phoenix, Arizona (in the middle of the desert...)
Female
Age: 23

Onset of symptoms: 1996
Tick bite: unknown.

1. Fatigue (diagnosed with Epstein Barr Virus in 1998 after two bouts of mono)
2. Brain Fog
3. Memory loss
4. Dizziness
5. Hair loss
6. Hand Tremors
7. Joint pain in my hands (only for one year)
8. Vision getting worse
9. Depression
10. Low body temperature
11. List goes on

Tests:
-IGG and IGM both positive from IgeneX
-urine test from IgeneX negative....

Diagnosed with "chronic lyme" in june 2004.

Medications
-Bicillin 2x per week for 2 months....showed no response good or bad

-unresponsive to Vitamin C IV treatment

-I will be starting 1000 mg Zithromax daily and I am waiting to hear back from insurance about Rocephen.

-I will be starting a homeopathic regimine for lyme created by a European doctor when i quit being lazy.

Current status: Waiting to get the ball rolling w/ my abx's. I want soooo bad to herx so that I know it is working :/ I am scared I will be unresponsive to the abxs. Also, nervous about the costs, b/c I have already paid thousands and insurance hasn't covered any of it yet.





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