littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I'm looking to write up a new blog post on misdiagnosis. I've met a woman (through my online class) who has been DXed with Lupus but is weary of the decisions her doctors are making. I sent her a message about how Lyme can be misdiagnosed Lupus among other things. She was receptive to what I was saying and was asking questions.
Anyway, want I want to do is have REAL LIFE examples of misdiagnoses.
So if you wouldn't mind- And I would title it - A Lyme Patient- or your lymenet user name if you prefer-
Could you tell me what you were misdiagnosed with, how long you were sick, how many different misdiagnoses you had by how many doctors, and what finally turned the light bulb on to say OH IT'S LYME!!!
I've been trying to focus on helping patients of other diseases that are commonly misdiagnosed as Lyme to help them see that there IS A CHANCE they could get better with Lyme Treatment. I'm trying to spread the word about Lyme and Lyme awareness. Because even if it doesn't help my targeted group it may help a friend of theirs, or a friend of a friend, ya know.
So if you wouldn't mind sharing your DX on my blog please post here or feel free to PM it to me, let me know if you just want Lyme Patient, or your Lymenet Name.
Thanks everyone for your support through everything.
posted
I don't know if this counts as a misdiagnosis, but this is my experience.
I started having all these crazy, seemingly unrelated symptoms June 2008--severe stiffness in my neck, faintness, numbness/tingling on my left side, dizziness, shortness of breath, heart palps, vision problems, crippling fatigue....
Went to the doctor, they ran all the typical blood work and did x-rays of my neck and spine, nothing out of the ordinary.
Continued going downhill with the symptoms, even started having phantom smells and really bad anxiety attacks that felt like massive heart attacks.
Docs tested for lyme and other things, but everything came back negative.
After 2 ER trips and several more doctor visits (neurologist, cardiologist, 3 or 4 eye doctors, etc.), my docs just said I have a bad case of anxiety. In fact, one ER doctor noted my age (39) and asked if I'd ever heard of a midlife crisis.
So I was just written off as having anxiety/depression issues, even though my GP acknowledged that I did nnot seem like the sort of person who would succumb to that (huh?).
What finally put me on track to possible lyme was my husband's cousin who had been dealing with the exact same issues for 3 years before she found her LLMD and was diagnosed.
I contacted him, and after a 6 month wait for an appt., I got in and was clinically diagnosed with lyme and ehrlichia.
If you use this, you can use my lymenet name.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I would definitely count that as a misdiagnosis, and to prove how quickly we are written off as a "mental case."
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I was ill for a year going from doctor to doctor and finally got diagnosed with Fibromyalgia. Don't know if that counts or not as there is no known cause for Fibro, but there is also no known cause for Lupus.
Took me another year of suffering before I discovered that I actually had Lyme Disease.
You can use my user name!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I had "yuppie flu" first, then it became "Chronic fatique syndrome" , then Fibro, then finally tested lyme correctly in 2006 CDC positive. Cant do do much ABXs so do supps, adrenal support, will try Bryron White herbals soon and electro machines.
Found my great LLMD that understands methylation/genetic issues and detox with MCS too. I have improved. But as I am typing this I am just pulling out of a B/P drop...those are not fun...but getting better now thank God....
I have gone through the ER for Heart Rate tachs, low B/P..Was first told panic attacks but later told low potassium and POTS. Found a cardio electrophysiologist that gets that part of it and he keeps an eye on me along with my LLMD and a good endo who knows about what lyme can do to the hyopthalmus/adrenal/thyroid axis.
Everyone needs a good team of people. That can be hard to find but NEVER GIVE UP !!!!
God Bless All of You !!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
Co-sign Lymetoo. Diagnosed Fibromyalgia in 2008. I scoffed at that conclusion. "Pain from an unknown cause" was not enough to satisfy my journey for recovery.
I also have Lupus-like symptoms, either from Lyme or being produced from the medications I'm taking. I can't dive into extra detail here, because I'm not certain what the culprit is.
Either way, I'm offically DX'd: Babesia WA-1, HaemoBartonella, and Lyme Equivocal.
Posts: 829 | From MD | Registered: Dec 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Thank you everyone. I will be making the blog post either tonight or tomorrow morning.
posted
My first symptom was high blood pressure, which I had never had. Was prescribed BP med. - two different types and my BP spiked twice. Went to the ER each time and was told it was stress or hormones. This happened in May of 2010.
Went to a naturopath and then an MD. Both tested me and said it was EBV and would take 6 mos - 1 yr to get better.
By this time I had many symptoms and many did not fit with EBV. A doctor at a Fibromyalgia and Fatigue Center told me I had neither - fibro or CFS, but something was wrong.
Researched myself, had some more tests and was clinically diagnosed with lyme -- in Nov.2010.
Funny that my first symptoms were sweating, shaking, rapid heart rate and high blood pressure. If I'd been a dog, the vet probably would have thought lyme.
Posts: 93 | From arizona | Registered: Oct 2010
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posted
bellajo.. Make sure you are tested for babesia!
(sweating, shaking, rapid heart rate and high BP are all symptoms of babesia)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter was misdiagnosed for four years. I always knew it was Lyme but could not get ANY doctor here to believe me.
GP said growing pains. Another GP said adolescence. Rheumatologist...hyper-extension in her joints. Another GP said she had issues with her mother (that really made me furious). Another couple of doctors...perhaps three or four...dx with phychiatric problems such as borderline personality disorder, manic depressant...they couldn't agree on anything, of course...orthopedic surgeon said he did not know what was wrong (I respect him for that...at least he was honest)...a prestigious medical center dx with CFS...this took four years.
Ended up going to live out east for nine months to go to a Tick Borne Disease clinic out there that got to the bottom of it...Lyme all along, of course, but not ONE doctor here would even remotely consider it.
One time my daughter and I counted up all the doctors we could remember and it was 28...we agreed that there were more, just couldn't think of them all.
It was one hellva ride.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I just want to say dido to "Starfall" + a lot of other symptoms.
They first said MS. then said...anxiety/depression
Funny, my blood work came back Lyme Disease!!!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
I would say we are generally misdiagnosed with anything and everything, since they do their darndest not to tell us what we have. And it hits all parts of the body, so it's a free-for-all.
In my case, fibromyalgia, thoracic outlet syndrome, myofascial syndrome.
Posts: 13171 | From San Francisco | Registered: May 2006
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
I was told once that I felt the way I felt because I read the pharmacy printout of side effects of meds I was prescribed....pretty much that it was the placebo effect and I brought those symptoms on by reading them. So it was my fault.
I was told I was sick because something bad happened in my childhood that I was hanging onto. ( I was perfectly healthy for 38 years, so this made no sense ).
I was told it was my thyroid, even though all of my thyroid panel numbers and scan were perfect, but that the lab numbers just hadn't changed yet, but would eventually. I just had to wait.
I was told I was sick because I was a teacher. Being around all those kids, I just caught a bug.
I was told if I lost 20 pounds, I would feel so much better. ( I first LOST 20 pounds when I initially got sick, then gained back 40 from lethargy and no exercise because of weakness ).
Finally, after many years, had an IGeneX test and had bands 31,34,41 and 58 show up, both IgG and IgM.
Posts: 1142 | From South | Registered: Dec 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I've already written about misdiagnosis and all the things lyme can be misdiagnosed as. But I just want to add REAL LIFE stories of it.
Many people think, oh well my doctor told me I had this, and the Lyme test came back negative so it must not be Lyme. I just want to help people who could better get better.
I'm going to have to do the blog post tonight or tomorrow. I slept in too late to do it this morning.
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Finally got the blog updated. I had a HORRIBLY busy weekend, a lot worse then I thought it was going to be. I posted everyone's story.
One's that didn't tell me whether to use their lymenet name or A lyme Patient, I just put a lyme patient or something similar. If you want me to use your lymenet name please send me a PM.
Thanks everyone!
And I'm always open for more stories to add, thanks again.
posted
The big one for me was Behcet's disease, based on an acute episode and lengthy hospital stay (including quarantine, a lumbar pncture, IVs of antivirals and multiple abx) which had eveyone stumped. I was tested for eveything under the sun -except lyme disease.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
23 years ago I had a flu-like illness, followed weeks later by a constant ache in my right hip, followed weeks later by a severe throbbing of every single joint (big and small) in my body.
When the throbbing stopped, I was left with muscle pain and stiffness and sleep problems.
I was diagnosed with fibromyalgia in 1987 by a Rheumatologist.
I knew that the literature says it has "no known cause" which I thought was ridiculous....of course it has a cause.
I focused on the viral theory (due to the flu-like illness)for many years and avoided Dr's since I knew they were not going to help me.
I had a worsening of symptoms in Feb 2008...severe head, neck and shoulder pain and stiffness. My family Dr said I just had a neck strain.
I discovered that I really had lyme in Jan 2009 after doing my own research. Then I found my LLMD.
(FYI for your friend diagnosed with lupus: My LLMD says I have a positive speckled ANA, which is common with lyme patients and often returns to normal with Rx).
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
I had an ID doctor tell me I had lupus (even with positive blood test for ehrlichia on her desk). She didn't even try to help me. :-(
People like her should not be allowed to practice medicine.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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MichaelTampa
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Member # 24868
posted
acid reflux GERD irritable bowel syndrome gastritis benign prostate disease chronic fatigue general anxiety disorder depression Tourette's syndrome just getting old (was 38 yo at the time)
Posts: 1927 | From se usa | Registered: Mar 2010
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posted
Diagnosed with Fibromyalgia years ago. (I didn't even believe in that disease)
Diagnosed with severe arthritis at age 40.
Diagnosed with "unknown virus" each time I went in with fever and flu like symptoms for years.
Only became debilitated after knee replacement surgery Sept. 2010. After 1.5 months of physical therapy for knee rehab, Muscles got progressively weaker, neck pain, severe neuro issues which kept me home bound, debilitated. Had tested positive for lyme all through the years of these "diagnoses" but reflex test sent to Mayo always came back negative.
Two weeks ago diagnosed with late stage disemmenated Lyme, and "multiutude of co infections"
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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posted
EBV June 1999 Hypothyroid 2006-2009 Myasthenia Gravis July 2009 Osteopenia Aug 2009 Neuroma Aug 2009 Alopecia Areata Jan 2010 (not misdiagnosis, but major symptom seen as totally unconnected to others) Corneal irregularities April 2010 CFS June 2010
Finally, diagnosed with Lyme and tested Igenex positive July 2010.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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posted
The dx was MS in 1999, and then Lyme in 2006. In about 2008 or 9 I tested positive (and negative) several times for Lupus - the rheumatologist said the test was non-specific for Lupus and just indicated a high level of immune activity. Use my Lymenet name.
Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
I've been misdiagnosed with about ADD, major depression, neuropathy, narcolepsy, chronic fatigue, generalized anxiety, major anxiety, parkison's, epilepsy, flu, and tons of other little things i've since forgotten. I've seen a lot of doctors.
About 6.5 years of misdiagnosis.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
I started getting very sick in 2003. But have had strange symptoms since 1988.
I was dx with MS in 2008, but did my homework and immediately went to an LLMD where I was clinically diagnosed and then came up pos. from different labs.
In early 2009 my PCP ran some tests and I came up with a + ANA and she said she thought I had either Lupus or Scleroderma.
But at my following LLMD visit he assured me that a LOT of his Lyme patients come up with + ANA that goes back to - after abx treatment.
Sure enough, in 2010 (beginning and end) I had two tests and both came back - ANA.
I'm so glad I didn't get any MS or Lupus drugs. They would have made it much more difficult for me to get well, or caused me to get worse since they use steroids for both.
I was blessed that I realized it could be Lyme before just going with the flow on what other doctors said.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Thanks everyone. I will add another blog post with all the new misdiagnosis today or tomorrow!
littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Has anyone been misdiagnosed with Crohn's Disease? I'm looking for this specific condition because I am going to talk to someone about her diagnosis and my thought that she has been misdiagnosed and actually has Lyme.
She has many symptoms that don't fit Crohn's. That they don't have an explanation for. Anyone?
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
littlebit,
You may get a better response to your question about Crohn's Disease if you create a post asking that question so more people will see it.
Good luck.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Yes, Dek- Good Idea. i will do that! And I've updated my blog with the new stories.
Thanks again. Off to post specifically about Crohn's!
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