This is my first post, and it is because I am at my breaking point.
Please read this with an open mind, I know Lyme is a first line thought for most here and I understand that, if you don't think this could be lyme, please say so.
Over the past year I have had some stress, however I have also had the following:
Chest pain, admittingly during stressful times it was worst, but also just sitting around. Had this from Dec 05-April 06. AFter 1 ER trip, and a whole host of cardiac tests - nothing came up.
Because of the chest pain, I was put on priolosec, and Xanax. During that time I had horrible stomach problems (no shocker given the meds). I have since quit both meds, stomach is better but I still have bouts of stomach pain.
Here are the biggies - and why I now suspect lyme.
1. Since about May (ironically after a BAD stomach virus which I took levequin for) I have developed jaw pain, neck pain, continued chest pain (more random) and PVC's from hell. I also get tingling in my arms from time to time, but in particular a numbness/tingling on the left side of my face from my temple down to my mid jaw. When I get it it comes and goes. Again, all cardiac tests came back GREAT, and I"m only 34.
Here is the thing. It seems like these PVC's, jaw pain, neck, arm pains come in cycles. Work or stress seems unrelated. I have a bite guard now for TMJ, which might help, but then again these things come in cycles.
I always have the PVC's, but at times it's only a few a day, during those times - NO JAW pain or numbness either. I'll go a week, think I'm great then it's like it ramps up for 4-5 days. At that time it feels like my upper chest is "bloated" at time also. I of course think cardiac - but exercise makes me feel better. Then, it cycles down (started a bad cycle last thursday) and goes almost away for 1-2 weeks - then ramps up again.
I do admit stress makes it worse (but I get stressed from this of course) but stress does NOT seem to be a trigger.
Here is the other thing. When the cycle is bad, my sleep sucks, and towards the end of it (after once again using ambien) I wake up shaking a lot with nausea (never throw up though)
Now, I do understand the stress diagnosis at times. However the cycle hit me mid-way through 10 days off. Plus, my stressors are gone now.
So - summary.
Passed nuclear stress test, and echo stress for heart along with 64 slice CT. Over the course of 7 months.
Passed MRI of brain for MS - May
Passed CT scan of upper and lower abdomen - April
Passed Gall Bladder Scan - April.
34 years old - living in hell right now.
Current symptoms (since may)
1. Heart Palpitations (documented)
2. Jaw, arm and neck pain that moves around, particularly during cycle. Muscles do feel tight and like I'm having localized spasms.
3. Bad sleep (during cycles)
4. Nausea in the morning (during cycles) with shakes.
I get some GI stuff, like worse bloating, indigestion during the cycles also.
Cycles seem to go in 2-3 week spins.
I have pulled 2 ticks off me in the past 18 months. I live in west michigan.
I'm down to this.
1. Lyme, or some other systemic infection.
2. It really is stress, even though my only stress now is over this.
3. Somehow after 3 major tests of my heart, and no reduced exercise tolerance or chest pain they have missed something, which would be REALLY rare with no major family history.
4. Something really off the charts.
Doc was good enough to give me a basic lyme test, which I passed. Is also sending me to the neurologist.
I really need help. If I really thought it was my job at this point - I'd quit.
Seems like lyme is a possiblity - anyone else think so?
If so - any docs to recomend in Michigan?
Thank you very much for taking the time. It's been the most frustrating 10 months of my life and while I"m "living" my life. It's been hard to enjoy with constant fear. (palps, jaw, arm pain...)
Posts: 10 | From michigan | Registered: Sep 2006
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posted
Sounds like me during the six years of wondering what the heck was wrong with me...and wondering how long I was going to live...and vowing NEVER EVER again to see one more doctor and get told "YOU ARE FINE"!
Well...there was one surgeon who swore my stomach problems were due to my gall bladder. He insisted it had to come out. Instinctively I knew I had something systemic going on. I'm happy to say I still have my gall bladder 12 years later.
Then I met someone with lyme disease and she felt sure I had it, too. I told her I was sure I did not because I had had three lyme tests done and they were all negative. She kept at me and insisted I make an appointment with an LLMD and rule it out. I did. LLMD did a western blot for lyme and told me there was no doubt.
That was after 6 years. And I have been treated off an on for six years. Had to retire early from teaching after 23 years. I am able to live my life with most of my symtpoms relieved. I have had two remissions where I took no antibiotics; one for 8 months, and one for nine months. Knocked out the coinfections, too.
Not sure where I would be had this gal not pushed me to see the LLMD. You should do the same.
Make sure you see an LLMD....the other docs are deaf, dumb and blind when it comes to Lyme.
The sooner the better.
Go to Seeking A Doctor forum and post asking for an LLMD near you. Leave your email so someone can email you with a doc's name. We can't post doctor's names here.
Oh...and good luck!!!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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I am sorry to hear you are feeling so crummy. Have to say that like nan, your story sounds like mine in the beginning four years ago...
Though it is no conselation I will tell you that many good people have paved the road to hell that you are in now, such as myself...I know that doesn't help...
I had an initial diagnosis of 'costochondritis' when I first got sick...tons of chest pain...I am a rower though and so after finishing a 200,000 meter row in three weeks just chaulked it up to that...as well as the tons of snow I was constantly shoveling in MA.
Fast forward to now...I finally had a health crisis upon moving to NC and literally could not function.
It is a long story but suffice it to say that I had tons of gastro problems...gut pain that woke me up every morning at 4 a.m., lost 50 lbs., migraines that would affect my vision and feeling in my hands and face, the list goes on forever.
While I am definitely of the mind to say don't narrow it down completely to lyme disease until you are fairly sure - I will say that as a healthy 34 year old it is rare for issues like you are speaking of to just progress as fast as they are. Makes me think it is lyme and possible coinfections.
I was 34 when it finally hit me super hard and that was my reasoning...I was a fairly healthy person except for migraines and then kaboom I couldn't function.
Anyway, I am jammering at this point...Find a good LLMD and include this appointment with your other rounds...get tested through IgeneX labs in CA and hang in there as best you can in the mean time.
I know it is scary and frustrating but keep the faith and see the LLMD.
Good luck and keep us posted!
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Welcome; I sent you my newbie's links/advise so know you have a lot of info on IGENEX testing & what is needed I gave you. In there was the extensive 125+ symptoms too.
Several things you mentioned; I have these questions:
1. sleep apnea test; have you ever been tested for this since you have poor sleep?
2. have you had food allergy testing for your gut problems?
Yes, I was tested for sleep apnea a couple months back as for a while I would wake up with one or both arms asleep and tingling. Passed that no problem.
Funny, I'm feeling better again today after a 5 day cycle that was awful. Much of my jaw pain and other pains are subsided, and the PVC's are down by about 50%.
I'm going to keep track of this cycle.
Question - does anyone know if acute stress can bring on lyme even faster during a cycle?
Posts: 10 | From michigan | Registered: Sep 2006
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posted
Seems that stress is a trigger for a lot of us, though it by no means causes the symptoms... just exacerbates them in a lot of cases.
Lyme does come and go in cycles for most folks.
You sound a lot like me in my early years of illness, too (now 19 years ago!) -- I went undiagnosed/misdiagnosed until early this year, being told over and over that I WAS FINE. Even after 19 years of illness, I came up CDC positive for Lyme.
I'd certainly get it checked out by an LLMD if I were you -- your symptoms are indeed consistent with Lyme or some other systemic illness.
Good luck and I hope you find relief soon.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
DEP,
Welcome to the board. Sorry to hear what you are going through. It is frustrating to come to the discovery that doctors don't have all the answers all the time. It's good that you are out there doing research for yourself.
The stomach virus intrigues me. It is possible to get reactive arthritis from food poisoning, including from salmonella. However, I don't believe that would cause your non-pain related symtpoms.
But, I'm wondering if you had food poisoning that triggered the Lyme or something else to get active. My LLMD (lyme literate medical doctor) is treating me for a salmonella induced chronic arthritis along with the Lyme.
She said if I didn't have Lyme, the salmonella would not have caused a problem. But, with a compromised immune system, it was too much.
It's important to remember that a trigger isn't always the cause. So you could have had Lyme or something else in your system and then the stomach infection triggered a reaction.
As others said, it could definitely be Lyme and it is worth pursuing. Post for a doctor in the seeking doctors forum.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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so sorry to hear about all the medical problems you are having- yep feels like hell on earth - but there is light in the tunnel
Igenex in CA and MDL in Conn, Boston and NJ are good labs to use --also note that you should be tested during menses and during the early part of the week -
there are some posts regarding what you can take prior to testing - that could prompt an immune response so that the spirocytes are uncomfortable. not medical advise but ideas
for the gi symptoms - i would question if you have gi bugs --- candida or others.
lymes causes a slew of heart problems - mitral valve prolapse, irregularities, and chest pain with unknown etiology.
there are lots of good experiences posted at this site.
they have really helped many of us don't give up !!!!
get a good llmd and do lots of research on drugs and the alternatives available
take care
mags
Posts: 259 | From California | Registered: Mar 2006
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Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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