posted
Me, me, me!!! According to the 10+++ docs I saw, I was just "anxious, depressed, and maybe suffering from trigeminal neuralgia." Luckily I work in the healthcare field and had a nurse friend who had actually come across some patients with Lyme over the years. She urged me to get a Lyme titer and I basically had to demand it from the jacka@@ neurologist my PCP sent me to. IMAGINE HIS SURPRISE when it came back positive! Thank G*D I found two great LLMDs. The rest of them can roll up their diagnoses, bend over, and insert them like suppositories...
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posted
one of the moms from my daughters pre-school...diagnost me.....didn't even know her very well......
her daughter was going through it.....knew i was sick......for awhile....
said..to me...you have Lyme..
not I THINK you have Lyme....but you HAVE Lyme.....
...had NO idea what that was.....just moved to the Jersey Shore......this was back in 1990.....
but she was right.......and gave me a name of a doctor....
thank god for someone butting in....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I went to a doc at Cornell's campus medical center, andwas apparently properly diagnosed and put on 6 weeks of doxy, but they took a faulty blood test and subsequently told me it was "negative, so I didn't have to worry". This, even though I had a bullseye rash. And I don't think they even tested for ehrlichia or babesia!
A couple months later I relapsed and it hit like a ton of bricks. They gave me more doxy, but it was too late, lyme had gotten entrenched, and babesia was still there. That was the beginning of the long nightmare. If I had gotten the proper diagnoses and treatment right away, I almost surely could have avoided years of misery and held onto many thousands of dollars (and made several thousand more!)! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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posted
I diagnosed my daughter, nearly had to beat up a DUCK to write the order for the blood draw and to have it sent to IgeneX. I provided the information.
Then I started more research.........before the IgeneX test came back for my daughter I figured out what had been wrong with my little granddaughter all her life. She was nearly 3 by this time.
Found this site, and got a real education and found LLMD. Thank GOD for our angel LLMD's.
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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I spent all late Winter and early Spring believing that my positive Elisa and indeterminate Western Blot were from a prior exposure and not an active case.
All the time up to mid April as my aches wore on, my doctors insisted tha my body was adjusting to thyroid medicine (Synthroid). It go to the point were I developed widespread muscle aches and burning sensations along w/ bad insomnia that I went to the ER. They told me I am classic Lyme at a later stage. They ran Elisa and Western Blots which came back again Positive and indeterminate (As per NYS Health Dept).
I went back to my MD with this diagnosis and she said, "Not Lyme, you probably have more auto-immune issues since your thyroid is auto immune (Hashimoto's). She refused to test again with all co-infections.
At that point I left her office not looking back. I immediatley booked appointment w/ local LLMD in Westchester County, NY. Doctor told me that it is Lyme and possibly co-infections. He said that the doctors should have treated me based on positive Elisa and 4 protein bands on western blot. Since last week started ABX Amoxicillin and are awaiting lab results.
I probably will seek out a new general MD as mine seemed to have bailed on me. We all support our medical industry dearly and they should respect trust our judgements. As you all know we are the only ones that have the best instincts on how we are feeling.
Everyone at work looks at me an says "Hey Dave you really look great." But they don't have any idea how bad I(we) feel on the inside. My doctor seems to fall in this line.
Good luck all,
Dave
Posts: 69 | From New York State | Registered: May 2008
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If it wasn't for the internet, I'm sure I'd still be undiagnosed.
Lyme just kept popping up when I would research symptoms, but not common in WA State I would rationalize. No memory of a tick, no rash, nada.
After 3 years of seeing docs that thought I "looked pretty good"...I was at my wit's end. The hyperintensities in my brain weren't "terribly abnormal" they told me. My very sudden onset of elevated BP was just "hypertension setting in" (overnight???). I still in my gut, though had no idea when/how I encountered a tick, thought it could be Lyme due to symptoms.
It was when I came across an article online talking about many Lyme patients having a propensity to get static shocked that I became even more convinced - I had that symptom too - along with oh so many others.
Tested IGeneX + for Lyme, Bart, Babs and Ehrlichia...now beginning my fight for wellness.
Posts: 566 | From West Coast | Registered: May 2008
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I saw more ducks then I can count and I was given unreliable tests for LD and no co-infections. The ducks were not capable of reading my test results. I had to ask for the tests in the first place.
I had a friend who had LD who was luckily diagnosed right away by her family MD. She convinced me to get Igenex testing and see a LLMD. It took me years after that to get an Igenex test because I believed my family doctors knew what they were doing and honestly for most of my life I could not afford proper testing or the money to see a LLMD and I thought that it was a luxury I could not afford because I had already been tested and told I did not have LD.
I often wonder how many people out there suspect they have LD but cannot afford the testing or the doctors to treat it?
I wish I had been diagnosed when I had better insurance but sadly that is when I was given inferior tests. Now I pay for almost everything out of pocket.
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
Yep me too. If I hadn't of done my own detective work, I still wouldn't have any answers to my multiple symptoms
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Yes, njlymemom...I am certainly just existing in "survival mode" right now. Only 3 months into tx and feeling as bad as ever. I am trying to just take it one day at a time.
I have to stop in and read success stories frequently or I become too overwhelmed and discouraged. I need something to hope for right now. This is one tough road. But like someone said above, at least I finally know what I'm battling...finding out was as much of a battle as fighting the disease is right now...crazy.
Posts: 566 | From West Coast | Registered: May 2008
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posted
I was recently diagnosed by an LLMD BUT I had a suspicion it was Lyme all along. Got sick back in October of 2007 and when I started reading all the horror stories of people going to multiple doctors and never getting answers I pushed to have tests done and asked questions.
The LLMD I see was reccommended by someone I work with and he is fantastic. Said we caught it early enough that I hopefully can kick this out. Certainly feel ALOT better since starting my abx a few months ago
I have to give credit thought to my first physician for even bringing the idea of Lyme to my attention--I would have never thought of it if she didnt mention it. Funny thing is after she tested me and it came back negative she gave up on that...Even my current physician didnt think it was Lyme. I had to mail her a copy of all my tests to prove to her that I do have it.
I knew I wasnt crazy Posts: 5 | From VA | Registered: Apr 2008
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Still in the process of self diagnosis. It's great when you get it all put together and try to give that to your doctor. Not!!
I typed out the following to give my doctor
My Goofy Undiagnosed Issues
Starting 1995 through 2007
1. Severe muscle cramps, (1995) legs, feet, hands, neck, back Diagnosis........after blood tests came back normal, was given quinine to try and told to drink more water. (I was not dehydrated though)
2. Extreme fatigue Diagnosis.........more blood work, all normal. Must be my work, told to take it easy.
3. Severe joint pains, knees, elbows, upper back and neck Referred me to a Rheumatologist. Diagnosis.............Same as muscle spasms. Due to overwork. Called it wear and tear arthritis. Given more muscle relaxants and celebrex.
4. Constant pain in chest Diagnosis...............unknown, had MRI, X-ray, mammogram, and ultrasound. They couldn't find anything. Probably a touch of arthritis in the chest wall.
5. Night sweats/hot flashes? This started when I was about 30. At that time I was too young for that problem, must be stress. Now 50yrs old and guess what? Now I'm old enough for pre-menopause!!! Tested hormones again. Got phone call that everything was normal. (Normal for whom?).
6. Chronic sinus infections Diagnosis.......deviated septum and growth in nose. Surgery to correct issues. After surgery I still have `sinusitis' Dr. thinks chronic treated for 2mos. and still no relief.
7. Migraines/headaches
Diagnosis.......after normal test results for thyroid, hormones, CT scan, must be stress. Given maxalt for migraines
8. Left leg swelling Diagnosis.........unknown. Saw rheumatologist and he did blood work all was normal he Noted swelling but made no comment. PCP ordered ultrasound scan of legs. All was normal. Still swells and hurts.
9. Shortness of breath Diagnosis...........Allergen induced asthma. Given inhaler but only got mild relief. Told to change my carrier due to exposure to mold animal dander etc.
10. Rapid heart rate Another trip to the ER. This happened at work just before lunch. Heart rate was so fast it was almost impossible to catch my breath. Boss took me to ER. It subsided after about 10min and was over by the time I arrived at the hosp. They took my BP and it was extremely high. After being examined the Dr. rx'd some anti anxiety meds and send me home. No testing done.
11. Irregular heart beat (flutters) Diagnosis, per cardiologist..........unk. Echo cardiogram showed mild issue with valve but couldn't explain irregular heart beat. All blood work and other tests were normal.
12. Hair loss Diagnosis...........blood work to test thyroid again, all in ``normal'' range. It must be that I have to shower at least 2 times a day due to work. Use more conditioner.
13. Tingling and numbness of hands Diagnosis...........possible pinched nerves in my back due to the muscle spasams. Given muscle relaxants and vioxx. I got mild relief but symptoms persisted.
14. Off balance or dizzy feeling Diagnosis...........inner ear trouble of unknown origion. Or a `silent migraine' due to being nauseous as well. Given script of Meds similar to Dramamine.
15. Extreme sensitivity to heat and cold Diagnosis..........None. All blood work normal
16. Numbness of one leg (one time) Went to the ER for this one. Dr poked me with needle to verify numbness. Told me that because I didn't look stressed it must just be a pinched nerve and gave me streatches to do and a re-check appointment for the following week. Resolved itself in about 3 days.
17. Light sensitivity Eye Dr said that age is probably a factor.
18. Stomach pains, mainly after eating, sometimes severe. Diagnosis......... blood work, normal. Had gallbladder and liver scan, saw minor marbling on liver and gallbladder looked normal. Told to not take so much anti-inflammatory drugs any more. (Was taking Celebrex and ibuprophen for muscle aches and joint pains.
19. Bouts of diarrhea Diagnosis..........stress?
20. Unexplained rash, 2006 (one time). Kind of like hives but blotchy and all over, didn't itch mostly a slight burning. This lasted about 1 week. I treated myself with benedryll and didn't report it to Dr.
21. Anxiety? attacks (2007) mostly wakes me up during the night. Had a really bad day, seemed like all my symptoms wanted to rear their ugly heads that day. Went to Dr. and he admitted me to hosp. noting that I didn't look so good. They ran thyroid tests and CBC.
Results were all normal. He came in and apologized to me but he thought I needed to see someone from the local area mental health center so he already called to have someone come and visit with me before I was to be released. Prescribed Xanax and Zoloft.
These helped very little but eased the tension just enough so that my symptoms were more bearable. Still taking Zoloft, I'm afraid to quit taking it because at least I haven't had that severe of an episode since then.
22. Traveling tingling and numbness starts at feet and works up to head. Part of the above mentioned so called anxiety attacks?
23. Losing train of thought easily and mixing up words ( off and on for all these years) Diagnosis.........again, not reported. Just how would I explain that one? I usually laugh it off as a brain fart.
24. Thyroid nodules Convinced Dr to do a thyroid scan by pointing out the swollen area on my throat. Nodules found and was refered to Endocronologist.
25. Floaters in eyes (dark blotchy stuff) I went to see eye dr. Diagnosis..........normal for my age (48) if it gets bothersome or worse make another appt. (hmmmmn.....wasn't I there because it was bothersome?)
26. Itchy skin, travels around and feels like bugs biting, especially when showering. Diagnosis...........none. By this point I don't want another psych. Evaluation so I haven't told the Dr.
I tried to list the symptoms in order that they cropped up. The part of all this that bothers me the most is that none of them have really gone away. At least 2-3 of the above issues every day. It's been at least 2 years that I haven't had a day go by without something hurting.
LOL....I am going to see my daughters LLMD so I guess I wont need this form.
-------------------- "Absence of evidence is not evidence of absence"--Carl Sagan Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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Hi! I had to diagnose and treat myself also. The drs. kept saying MS and they didn't know what was wrong with me. It was very frustrating. Finally, I have a LLMD that knows what they are doing!
Posts: 11 | From tickland | Registered: May 2008
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