My name is Babs- symptoms began in 1997- blurred vision - no one could figure out what it was (6 of the best specialists) Went on antibiotics for almost a year because they didn't know what else to do w/ me ............
1998- got pregnant w/ my daughter! Great pregnancy!
2001-started having horrible body aches on and off but I thought it was because I was now in my 30's and just had a baby (1st and only one)
Kept on getting sinus infections .......... Went on sugar busters diet to lose the last 10lbs and dropped 28 in 2 months (looked like a skeleton) Neuro problems , severe anxiety, horrific pain all over! Felt like I was 80 !
Went into MRI- they discovered I had a lesion in my CNS - DXD w/ Probable MS.
Devastated and in denial - never took the meds for it ! Thank God!
Went to a seminar for my Mom's friend and was not at all interested in going to a seminar for anything that had to do w/ health problems - I couldn't even handle my own!
Listened to the testamonies and was SHOCKED! They were my stories !
Got tested by Igenex and met CDC's criteria ...........Unbelievable!!!!!!!!!
The ironic thing was my mom asked the neurologist to test me for Lyme and he said I wish it was that easy but tested me anyway in 2001. I got my records 2 years later and found that I was 1 band away from meeting their criteria then - if you test positive for one band - you have it!
P.S. The neurologist was more shocked at the arthritis he found than the lesion. He asked if I was in a horrfic accident . I said no . I have 3 slipped discs, 1 bulging disc , stenosis in the neck and no signals in the lower spine..............He asked me how was I walking ????????????????I guess GOD! God bless each and everyone of you my friends! Thank you for this life line!
Last edited by Administrator; 03-30-2006 at 08:16 AM.
Location: Phoenix, Arizona (in the middle of the desert...)
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
5. Hair loss
6. Hand Tremors
7. Joint pain in my hands (only for one year)
8. Vision getting worse
10. Low body temperature
11. List goes on
-IGG and IGM both positive from IgeneX
-urine test from IgeneX negative....
Diagnosed with "chronic lyme" in june 2004.
-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.
I was reading your post where you think you were bitten by tick on Nantucket. My father-in-law from Maine, sent me a clipping from the Maine Sunday Telegram dated 12/12. It's an article about the island being up in arms over proposed special deer hunt. Island residents know the tick danger, but don't want the mess, noise and other trouble caused by irresponsible hunters to get rid of the over population of deer.
Nantucket has one of the highest rates of tick-borne disease in the world and upwards of 2600 deer on an island that is 3 to 6 miles wide and 14 miles long. Doctors feel it's a public health issue. Nantucket has a considerably higher rate of Lyme then other parts of the state. They had 850 cases in 2004 per 100,000 compared to 23 cases per 100,000 for the state and 8.2 per 100,000 nationwide. The island hospital treats 150 to 170 cases of Lyme annually plus 25 to 30 cases of babesiosis, and 15 to 20 cases of ehrlichiosis. The same tick (about 1/2 of all the ticks on the island are infected) can carry one, 2 or 3 of the infections.
I thought the article was interesting.
I too am feeling better. I still have all my symptoms, but just feel better. I am on septra and minocyn. I go back to Huntersville in 2 weeks. My appt. was actually this Friday, but I changed it to coincide with a trip to Atlanta. I expect to get Flagyl at that time. I don't know if I will stay on my current combo. I have had no problem at all with them and my joint swelling is gone. I'm happy to feel better, especially getting me through Christmas, but would like to see some of my symptoms disappear.
Symptoms started 1996 after tick bite (didn't see tick) but had a Rash on my Ankle.
First saw Dermatologist for Itching Rash, told him I was running fevers and felt extremely fatigued. His answer was that I had a form of Eczema and gave me a tube of Cortisone Cream.
Saw 2nd Dermatologist who took biopsies of Rash, did blood work and told me that I was NOT bit by a tick, but was bit by a Spider. Ha, ha, ha!!
Fevers kept coming and going, I felt more tired and started to fall asleep at work. I didn't want to lose my job so I went to a Holistic Doctor who gave me IV's of Vitamins and some Viral IV. Also got a shot of B Vitamins in my butt every week. I did feel better but it wasn't a cure. The cost was $500.00 per week, not covered by my insurance. Ouch!!
1998 to 2001: Saw over 100 Doctors on Long Island, even the head of Stonybrook University Hospital and after doing intensive research on the Internet, my symptoms fit Ehrlichiosis. So I asked Stonybrook Hospital to please give me the Ehrlichiosis Test. His answer was: If I had Ehrlichiosis I would be DEAD. So I didn't have the test and I did end up having Ehrlichiosis and Lymes combined.
2002: Finally met a doctor who treated some Lymes patients and it was Lab in California, not Igenix, can't remember the name of this Lab, who found out that I tested positive for Ehrlichiosis and Lymes. This Doc instructed me to take 400 mg. of Doxycycline for 8 months which I did. Then he refused to prescribe any more Antibiotics for me even though I told him I still didn't feel better.
2003 to Present: Had a complete relapse with symptoms of:
Joint Pain, especially in my legs
Sleepy all the time
Brain Fog and loss of memory
Very bad circulation in my hands
Ear Lobe Pain when I lay down (the cartilage in my ears are damaged)
Others, I can't remember because I am used to it now
Had MRI, EKG's, all the basic tests that everyone mentioned.
I also feel like Death right now.....
Only Medication: Doxycycline for 8 months
P.S.: We have so many Deer here also, especially eastern Long Island.
Last edited by Administrator; 03-30-2006 at 08:59 AM.
2. positive for all Lyme tests including CSF (spinal tap)
3. Brain Scan in 2000 showed "Alzheimer's"...sigh I'm better now than then!
4. MRI in 1998 - negative
5. severe lower back pain, confusion, headache, joint pains, memory loss, sinus infections, sensitivity to light, noise, increased taste and smell sensitivity.
6. facial numbness and lips.
7. ear ringing and fullness
8. fatigue. need for naps almost every day especially when off meds for a while.
9. bladder problems
10. falling and walking imbalance without dizziness
11. memory loss had included forgetting children's names, how to drive, cook, clean, do housework, retain information for many years.
12. 6 weeks of I.V. Rocephin - with Herks. Relapsed one week after treatment ended.
13. multiple short treatments with Doxy,Mepron with Zithromax (helped my brain the most) Penicillin and other meds I can't remember.
14. multiple bull's-eye lesions on both legs - sent to allergist - NO allergies to 100 tests...no diagnosis either...
Painful and disorienting effects immediately after booster shot years ago also....was told that it's natural to get reactions to immunizations, even as much as a month later!
Most recently on one month of Flagyl - awful Herks! broken bones from falls, flu (for the first time in my almost 70 years) still brain problems but although better since treatment, not quite as good as Mepron/Zithromax.
Still hanging in!
Oh, lost a full time job and insurance because of memory and concentration loss.... as well as giving up a part-time business.
? - what is an LL MD? I go to someone who specializes in Lyme and he's helped me the most...also, I'm interested in Cat's Claw, which I've heard about from others..
Hi all. Mickie here, a young 40 yr old @ the Jersey Shore w/2 kids, 1 hairy dog and a fat cat. My ability to live with this long term illness vacillates between hopelessness and patient.
- Don't ever remember a tick bite
- I was one of those annoying people that never had so much as a sniffle; I've been quite humbled by this whole thing
- Probable infection fall/winter 2004 with rash and joint pain that I dismissed
- Above sx got really bad summer 2004
- Saw 9 or 10 docs who couldn't find anything wrong with me
- Finally saw Dr. E in Jackson and diagnosed w/LD
- Positive IgG WB by IgeneX (5 bands); IgM Equivocal
- Fogginess 24/7; I feel like I'm stuffed in a giant marshmallow; as if I'm drunk
- Imbalance; walk into walls; can't walk at all in the dark
- Brain fog is 100 on a scale of 1 to 10; it's horrible!!
- Short term memory is G-O-N-E
- Very irritable; slightest thing sends me flying off the handle
- Speech problems; I'm not not articulate anymore
- Weird numbness in my face; I don't feel connected to my surroundings or the air around me ... very strange
- Itchy red rash with raised bumps; semi-circular ~ 5" dia.; comes and goes
- 1200 mg of Omnicef/day
- 800 mg of Ketek/day
- Milk Weed
Last edited by 6Blues; 05-18-2005 at 12:04 PM.
Reason: Update w/more recent information
I used to live on L.I. and I used to do field surveys in Huntington. Worked in Huntington for a while.
You just refreshed my memory. When you mentioned the spider bite, now I remember thinking I had a spider bite this past summer. I live in NJ in very heavily deer populated area. The only thing is I didn't have flu symptoms until October 2004 and was diagnosed. That was a couple weeks after I went running on wooded trails in a park and I was jumping deer everywhere. If that's not an omen. But now I'm wondering if that thing I thought was a spider bite was a tick bite. My property is partially wooded and we did a lot of fishing and were at that park a lot this summer. I know people who have no trouble with lyme when they've been diagnosed early and I'm having too much trouble for thinking I've caught it early.
I'm on my 3rd 30-day cycle of doxy. If that doesn't work they will try something else. It's possible I've had lyme before (because of my history) and was reinfected . When I lived on L.I., I suffered hip and shoulder pain for years and thought it was from running and living near the water and being over 30. I did tai chi for a year and it went away and is now back with this last infection along with many other symptoms.
My name is Nadia and I am from Bulgaria. I live now in Philly. I am 26 years now.
My husband has Lyme and that's why I got tests done. A tick has never bitten me.
I had ELISA done in Bulgaria and it came positive for IgG and I had Western Blot done here in IGeneX, which came positive for IgM.
Anyway I am on Biaxin 500 mg twice a day. In two weeks the doctor will probably switch to Doxy (we are going to Florida for couple of days and with Doxy you can't stay in the sun).
I am on medication for one day so I don't feel bad yet
My symptoms are not so bad, I have swollen glands for over a year now- on and off-; sore throat- on and off; acid reflux - I have never had any problems with my stomach before and rashes lately - after shower in the beginning
I am sure my husband Ekim will have lot more to say
I'm Valerie. Age:37
My husband is Rob. Age:43
Symptoms started in Feb.2004, although I now think it could have been 2001.
horrific panic attacks
extremely easy to anger
couldn't stand noise (tough w/ two small boys)
two ER visits, heart monitor, stress test, numerous EKGs, Echo, gallbladder ultrasound, CAT scan, two upper GIs, two HIDDA scans, more blood tests than I care to mention
gallbladder removed in June 2004
Chiropractor suggested Lyme. Asked my dr. for test, she refused. Office would not return my calls. Gastroenterologist told me to see a psychiatrist. Nurses made some very rude comments. Finally sought a naturopath.
Bowen test in Sept. 2004. Positive for Lyme - negative co-infections
Husband tested in Dec. 2004. Positive Lyme - negative co-infections
His symptoms were heart palps, muscle twitches, joint pain, jaw pain
Carole :: age 47 :: located in Belleville New JErsey
My symptoms i realize in hindsight have been a constant progression :: their onset i do not remember.
tingling in hands and arms
swollen left knee
deep leg pain
heart palps :: chest pain
to be honest, i attributed all of the above to menopause, arthritis, age, etc and just thought, okay it's just part of life, man am i glad i sought help. I have not started any type of treatment as of yet
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: 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 now wonder if constant use of steroids kept my immune system suppressed or ? just enough to hold off lyme or lyme symptoms??
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.
The following user gives a hug of support to cjFTWORTH:
South Carolina, near Clarks Hill. Middle aged.
each of my dogs contracted erlichia, and were treated, and cured. Although one died 6 months ago from most likely unrelated causes (heart disease).
I found a tick behind my knee while taking a shower. Within 3 days, I had an odd rash, the area was feverish, and itched like crazy. Day 5 I was in the doctors office. My ususal doctor was absent that day, so I saw another. He stated the rash didn't look like the ususal bullseye, but put me on doxy for 7 days 100 mg x 2 daily as a precaution. 17 days later, saw my reg doc, who apparently had not taken the time to peruse my chart/records, and I had to cue him in. 2nd blood test taken. We discuss my flu like and other symptoms. I didn't know what "herxing" meant at the time, and apparently he didn't have a clue himself. Refill of the doxy for 14 more days. Went back to the doc 3 wks later, the 2nd test came back as high as the 1st one, I get the "must be in your head" treatment, brief discussion of anti-depressants, which I turned down and a trial of sonata...nasty worthless stuff! I only tried one pill. Also got a "well you've most likely had enough of the doxy to take care of it. Come back in 3 months we'll recheck.
I haven't been back. Tried some supplements, green tea caps, sib. ginseng, coQ10, flax seed, evening primrose, and ginko biloba, all of which have helped somewhat with the fatigue and "brain fogs" . That is until the last several months. Starting in late Jan, it all started again. Fatigue so intense, I can't seem to force myself to move from the couch during my time off. Body aches and pains so severe I put off going to bed because I know how badly it will hurt getting up the next day. Here's the list of worsening symptoms in no particular order of intensity.
2. Body aches --all over
3. tingling and numbness in extremities
4. facial twitches on again (for weeks) and off again.
5. eye pain from bright light especially sunlight
6. sharp shooting pains in extremeties
7. Brain fog, disorientation, lessened ability to concentrate
8. heart pounding, even at rest and "relaxed"
9. Sudden unexpected anger or impatience at "little things", vague uneasiness, sudden feelings of doom and sadness.
10. Back of skull headaches preceded by swelling and muscle knots.
I' m sure I've left something out.
Lyme Disease Diagnosed by Steven Bock, Rhinebeck Health Center (he does both traditional and homeopathy) in 11/04.
- traditional test negative
- tested positive for Babesea
- tested positive in urine test - showed antigens (?) (he told me that this was a positive)
11/04 - 1/04
12/04 - current
No significant changes - do get terrible 'hicks' reactions every 4 weeks
severe nerve and muscle pain
stomach problems (get stabbing pain)
ringing in ears
elevated cholesterol & triglycerides (didn't used to have)
elevated blood pressure
sweats (during day - very rare at night) - drenching sweats
eyes extrememly dry - feels like there's fires in them
mom, two young kids
Southern california (but travel to east coast frequently)
DX last month LD; co-infection tests pending
no recent tick bite history
vision wierdness, blurryness, blind spots, photophobia
kind of electical power shortages in legs and arms; sinking feeling
arms and legs go to sleep overnight
panic/anxiety (mostly of the what-the-heck-is-wrong-with-me sort)
whole body fasiculations
ear "tiny dial tone," strange sensations in left ear, cold/noise sensitive,
hearing distorts like a stereo speaker when my kid is screaming
Hi all. Figured I should introduce myself and its nice to know there are others out there. I am doing as much research as possible.
I have been tested for all three Lyme/ Ehrlichiosis /bab.
Started around April 25, 2005
Started as flu like symptoms and it progressed from there.
Fever, on and off.
sore throat, mild to annoying
lower back pain
Brain fog big time
Knees a bit achy
All over sick feeling
night sweats -I'm menopausal....so could be normal really
edgy electric type feeling-hard to explain, loud noises felt electrifying?
I am a dog groomer and I did pull 4 ticks off me in one day. All four had bitten me, only one little teeny one was actually stuck in me.
Originally my endo thought my thyroid went out of whack but I had the good sense to WRITE everything down and it hit me , crap, I had ticks on me.
When he saw that, they stated me on Doxyclc. immediately. I should have my results by Wed of this week.
I was only given a 2 week dose of doxycycl....if my test results are positive for Ehrlichiosis , should I push for a 4 week treatment?
In the past 3 weeks, 3 other people have tested postive for Ehrlichiosis in my county including one vet. We are located in Middle TN.
I have been on meds since Tues and do feel better, though still tired. My doctor is also running several other tests on adrenals, thyroid, blood chemistry, liver, etc......so I am getting a thorough work up. I've been a thyroid patient for 12 years and I have never felt LIKE THIS before, ever, so I will surprised if I come up neg to any of the tick diseases. Also, insurance will not pay for any of testing for the tick disease. Isn't that sweet [not!]
I have been extremely health with no other health issues. I have never felt this bad for this length of time before. I continue to work but its been difficult, and my area, and my line of business brings me in contact with ticks on a daily basis.