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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.
Hi all....know I've been around for a while but like Jules just never got around to posting my situation up here for everyone. So here goes...

28 was living in Madison, WI pre-lyme....moved home to my parents in Hastings, MN b/c couldn't live on my own any longer this past summer...now making treks to Madison when able to. Hoping to move back to Madison for good in the next 6 months.

Applied to social security for disability in 6/05...still waiting for their decision. But have been awarded long term disability from my past job. So that's a definite god send.

Am seeing a llmd in Springfield MI....Dr. Charles Crist.

Have been dxd with Lyme twice -

AFter trip to east coast with my family at age 15, began getting sick/pain a few months later. Now remember had a big swollen red spot on my shin...didn't look like a bulls eye rash at all. But all tests through 1991-92 were negative or indeterminate but after battling for a year a doctor finally agreed to treat. Lyme went dormant. Began relapse 3 years later with onset of symptoms with increasing regularity over next 13 years, until becoming acute this past March in an alarming fashion starting with Optic Neuritis in both eyes. All of these symptoms and episodes at the time were overlooked as lyme related, and were sadly only looked and treated as seperate events. Including:

Colds, flus, and sinus infection after sinus infection, too numerous to count.

2 boughts with mono (1997, 2000) that each lasted 6 or more months causing me to lose 2 different jobs!

Dxd with Hypoglycemia in 2000.

Dxd with Raynauds syndrome in 2001.

About 15 months of strep (onset 2002), case after case of strep in a row leading to tonisl removal at age 27 (2004) - requiring 2 seperate emergency surgeries to stop the bleeding and a loss of another job due to slow healing and recovery!

4 months of reoccuring pink eye (up till then had never even had pink eye!) leading to a dramatic loss of vision in both eyes upon waking up one morning in 3/05 leading to a diagnosis of Optic Neuritis in 4/05.

EEG/VER (visual evoked potential) testing confirmed episode of Opitic
Neuritis in 4/05, forget what it's actually called but it means i have semi-permanent damage to communication highway between eyes and my brain. docs don't know if or when it will ever heal.

Tested for Lyme using Elisa/Titer...over 4 different times from 2/05-5/05 all came back negative.

Spinal Tap done (4/05) all normal....less than 3% of people with Chronic Lyme will test +

MRI scans of brain/c-spine in 3/05 showing multiple areas of extreme dymelynation of white matter in vision centers, speech, as well as cognitive areas. Had to some doctors suggested MS,would have been diagnosed with it but my family wouldn't accept it so convinced me to see Dr. C in 5/05.

Then I finally tested positive after sending for results from Ingenex labs. Postive in both IgMs ( *for bands 18, 23-25, 28, 30, 31, 34, 39, 41, 45, 58, 93)and IgG's (*for bands 30, 31, 39, 41, 45, 58, 66, 93) which meet CDC requirements plus an extra 5 bands or so! So much for all the other docs being right about being negative for Lymes and having MS.

Dxd Chronic Late Stage CNS Lyme in 5/05. Don't know if have any of the coinfections as didn't have money to test for them, but llmd is treating me as if have them. When I go to visit his office again in March am going to do tests finally and see if that's part of the problem to why i am not getting better faster.

Dxd with Hypercoagulation.
Dxd with Chronic Instestinal Yeast...ongoing treatment of Nystatin.
Dxd Neurotransmitter Deficent with almost non existent levels of Seratonin, Dopamine, Norepinephrine, Epinephrine. On Amino Acid Protocal for Non-Parkinson Related Diseases.

Began treatment in 5/05....treated with 200mg Doxy 2 bid...3 days later Herxed for 4 weeks. 6/18 restarted Doxy at 100mg 1 bid...1 day later Herxed for 1 week...this is how my pattern has been for all orals since beginning of treatment. Herxes left and right. Have been on Zithro, Doxy, Flagyl, Clindamyacin, Biaxin, Quinine, Hydroxychloroquine, and 3 rounds of IV through a Hickman Port; Rocephin 1 round and Primaxin 2 rounds. Both of these had to be pulsed as well since I couldnt' tolerate them. Am currently on Ceftin, 1/4 of a 500 mg tab every other day. All my body will handle. Any more than that and I'm in a herx for a week or more. Still have a long way to go.

Anyway here's a list of symptoms too ~

chronic, severe fatigue and exhaustion
swollen, aching, stabbing pains in all joints (varies from day to day where)
cracking/popping joints - chronic pain
sore/stiff/popping jaw almost like TMJ
bruised, painful muscles all over body
heart palpatations
chest pains
impaired gait (sometimes)
severe stabbing random pains (trunk/head/stomach/spine/etc)
intense, chronic headaches (blinding stabbing pains/pressure)
impairment of muscle coordination
loss of short term memory (cannot remember events sometimes from 5 mintues ago!)
loss of ability to problem solve/make decisions (produces anxiety attacks)
loss of ability to remember correct words/recall
saying/writing wrong words/letters (mixed up or entirely wrong!)
cannot follow conversation becomes to overstimulated/complex for me
inability to concentrate
loss of vision in both eyes (gradually came back - now have multiple images/floaters/auras/after images/grainy-fuzzy vision in both)
chronic sore throat
decrease in balance
vertigo/dizziness
motion sickness to the point of throwing up when in car....hence no more driving for me.
itchy all over (continue to do all the detox I can all the time, and yet still i itch.)
sensitive points of skin/body
buzzing/ringing in ears, throughout entire body
numb/tingly feeling/pain throughout extremities/head
red spots/blotches on all joints after bath/shower/stress
swollen hands/knees/ankles, very red/painful/mottled
change in taste, decrease of smell
extreme thirst
hair loss/thinning
photosenstive/sound sensitive (to the point of wearing ear plugs to run water for a bath sometimes!)
nausea, almost constant
mouth ulcers
nose ulcers
low body temp (96.8 - 97.9)
some days high fevers (101-103)
sudden onset of chills
hot/cold spots (most times one side of bod is cold/other is hot!)
burning or icy spots..feel like a dime size spot is on fire or frozen (varies on body)
chronic cold feet/hands causing pain and discoloration
severe pain in heel of both feet, unable to stand for more than a few minutes
insomnia - when can sleep only fitful for 2 hours in a row
night sweats
vivid dreams/nightmares
muscle twitching/electric charges in legs/arms/neck
tremors in fingers/toes/neck
twitching eye muscles
swollen glands
multiple allergies
extreme dry skin
numb arms/legs/feet/face (comes and goes, lasts hours or days!)
pressure in ears
stiff neck/grinding and swelling of vertebraes
burning/dry/itchy eyes
extreme mood swings
no patience
intolerable of exercise, alcohol, or sugar....increases severity of all symptoms ridiculosuly.

Could keep listing them off but these are the main ones....Anyway sorry this is so long, but felt motivated to actually cut and paste most of this from a post i put on the board months ago on a symptoms list thread and just update it a bit to what's going on now.

Can't wait for days when I feel just plain "crappy" agin rather than super extra crappy! This lengthy battle has so far cost me 3 jobs, more money than I can count, a good deal of my youth, and a few friends as well. Nasty business this Lyme...nasty indeed. anyway I am so glad to have you all on this board...don't know what I'd do without all of your support over th past months and in the future.

:) Shanna "shawna"





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