posted
I often see people posting that they were "misdiagnosed" with MS, FM, CFS, RA, etc.
This may seem like a dumb question, I know. But how do you know it was a misdiagnosis? Did your LLMD tell you? Did your regular doc tell you? Did you come to the conclusion yourself?
I have been told so many things. Early MS, LD, I have too many kids , now possible RA. I have yet to find a doc I trust entirely, although I have started with a new PCP (a DO) since we moved.
Whose opinion do you go with?
Thanks!
Posts: 9 | From OH | Registered: Oct 2009
| IP: Logged |
posted
Most of the things people are misdiagnosed with have no cause -- they are just labeled as an illness because the symptoms are similar. For example CFS and Fibromyalgia. Even MS and parkinsons's can fit into that group.
In my opinion if you test positive for lyme and other viral or bacterial infections then those are real illnesses with real treatment -- they could be the real cause of someone labeled with CFS etc.
And if tickborne treatment improves your symptoms then I think that pretty muich proves your diagnosis.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
quote:Originally posted by seibertneurolyme: And if tickborne treatment improves your symptoms then I think that pretty muich proves your diagnosis.
That sums it up nicely.
I was (mis)diagnosed with MS, Fibromyalgia, Lupus, Chronic Fatigue, Myofascial Pain Syndrome, IBS and many more.
All of those were considered lifelong, with no real treatment options other than symptom management and lifestyle changes - which meant lowering my expectations of life.
Since getting adequate treatment for Lyme and many co-infections - I no longer have symptoms of any of those.
I have not had a recent MRI to check the status of the plaques that (combined with symptoms) earned me the MS diagnosis - but since I no longer have the symptoms, MS does not seem to be an issue.
Others here have done follow up MRIs and have seen that their plaques actually shrank.
That would be nice to know, but my insurance does not particularly want to pay for another MRI when I am not symptomatic (nor do I want the procedure if it's not necessary).
I feel confident in saying that the above were misdiagnoses.
Does that help clarify?
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
five, I think after one decides they are their own advocate and a doctor, any doctor even a LLMD are only a tool to use, does one realize....
I'm really the one in charge here. It's our lives, our health, our being and we must in charge of ourselves.
That is so hard to do when one is so sick and just wants someone to help them feel better NOW. The sad part is NOW just isn't possible with this illness(for the majority).
All of those diagnosis are only symptoms. One must get to the underlining cause of those sx, whether it is RA sx, lupus sx, MS sx.
What caused a relatively healthy indivual to wake up one day and their world came crashing down? What part does my previous years of unexplained history/health have to do with this now?
It's like the old question what came first the chicken or the egg? Was it the lyme? Was it a previous bartonella infection? Heavy metal poisoning? Was it the years of neglecting our toxic body?
Those dx were triggered by what exactly? It takes a long time for many to get answers.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
I agree with all of the above. In the end, we and a test result help us and our drs decide.
A dx of MS should not involve positive bands for lyme. And FM has a CAUSE they never look for. CFS is bacterial in origin also.... ok, I could go on and on here.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I was misdiagnosed with menopause. But, I had so many strange symptoms that did not fit with that diagnosis that I continued going from doctor to doctor to find a better answer.
I went to a few endocrinologists. The second one said, "This isn't menopause. I think you have either lyme disease or fibromyalgia."
He tested me for lyme and I was positive.
Good lyme treatment got rid of my "menopause" (it was a false menopause caused by lyme) and all of my other symptoms and returned me to normal.
I received poor lyme treatment for the first 2 years after my lyme test. It helped me, but it didn't reverse the menopause or restore me to health.
So, I suggest people get to the best lyme doctor they can and see what symptoms go away.
I suggest a doctor who follows the Joseph Burrascano lyme treatment guidelines since that is what got me and all my friends well.
I was undiagnosed and misdiagnosed for 10 years. Lyme stole 5 years of my life.
It has now been nearly 5 years since I completed my treatment and I am still symptom-free, enjoying my life. The doc is the key to getting rid of this disease. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
hunter- many llmd's think the lyme infection causes MS.
that being said drs all agreed for decades that ulcers were caused by stress. 15 years ago they figured out it was actualy caused by a bacterial infection (sounds familiar doesnt it). now its treated with abx (sounds familiar doenst it).
the whole medical community has been wrong in the past. i would bet they are wrong on lyme. i will guarantee you they will be wrong in the future. its your life i wouldnt trust them if i were you. by the way i basicly am you, story exactly the same excepts i had a bite and not as obvious a lyme test as you had.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
| IP: Logged |
posted
My fibro dx never responded to anything. Then when I found out four years ago that I actually had Lyme, I started on clindamycin antibiotics around the clock. Within one week, my fibro pain was almost down to zero. One month later, I was herxing. And I still take the clinda to prevent muscle and joint pain.
I had a known tick bite. Ten weeks later, stiff neck and shoulders; 18 months later, full-blown fibro symptoms. I can date every symptom I have, including the fibro onset.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I'm right here. Just today getting back to reading on here.
I guess I'm just really confused. My sx don't seem to fit anything neatly. Can't figure out who to believe and have read things until my eyes cross.
Just see 'misdiagnosed' so much on here but have never heard anyone say HOW they know it was misdiagnosed. I've heard a few dx but not sure about any of them. Wondering how you guys were SURE.
Posts: 9 | From OH | Registered: Oct 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
When I was misdiagnosed with FM, I just did not accept that I was a healthy active person one day and sick the next with an illness with an unknown cause and cure. That just didn't make sense to me. So I questioned the diagnosis.......Thank Goodness!
Also, I was tested for everything under the sun for 2 years and nothing ever showed up. That is a huge clue to it possibly being LD.
LD is a "clinical" diagnosis, so not just any doctor can diagnose it. Just like if you suspect you have cancer, you go to a cancer doctor, not a rheumatologist. If you even think there is a possibility that you have LD, its a good idea to get to a Lyme Literate MD(LLMD).
I guess I was sure after going from doctor to doctor for 2 years and none could tell me why I had pain and fatigue and brain fog, or what was causing it. FM is just a set of symptoms which I already knew I had before I went to the doctor. I wanted to know what was causing these symptoms. Not one doctor in 2 years had an answer for that.
Then I discovered the symptoms of LD and I had so many of them. And a light bulb came on in my head. That is when I started looking for a lyme doctor.
I got a clinical diagnosis, started treatment and a year later tested CDC IGM positive for lyme disease. Thats how I know the FM was a misdiagnosis. That and the fact that FM is a stupid diagnosis!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
WildCondor
Unregistered
posted
What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are the cause of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.
In my story, I set out for a diagnosis, and treatment for my cause. I was mis-diagnosed as a crazy person with chronic fatigue. I heard the previous responses from so many different doctors and medical staff that I have lost count of them all. I was told repeatedly that I was crazy, in perfect health, depressed, have chronic fatigue and that I could not possibly still have Lyme disease. It is all one huge Lyme conspiracy.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
, now possible RA. I have yet to find a doc I trust entirely, although I have started with a new PCP (a DO) since we moved. 
Printer-friendly view of this topic