posted
Hi, I am a newbie. I have been having issues for years. I was diagnosed with rheumatoid arthritis when I was 11. I was diagnosed with fibromyalgia in my late 20's.
I've been to a neurologist recently for severe fatigue, weakness, and tingling sensations. He did a lyme test twice. The first test was positive. The second test was negative.
I would assume he would want to do the test again, but he is assuming that I don't have lyme because of the 1 negative test.
I have a lot of the symptoms of lyme disease, and have heard links between lyme and fibromyalgia and arthritis.
Should I see a different neurologist? I'm just so tired of doctors not being able to figure things out with me. I feel so helpless and worthless sometimes...
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Breaking this up for easier reading for many here -
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
it sounds like you do have lyme...the testing has problems. if your first test(elisa) was pos u probably have lyme and have it pretty bad.
i cant explain everything to you right now...it is here...but im sure most experienced people here will tell you you really need to get to a good llmd (lyme doctor)
i myslef was fiest dx with RA then fibro and for 15 yrs not dx for lyme...but when i finally got dx and treated aggressively i have improved
you have a good doc in MO...and he is one of the most reasonable priced. most dont take insurance.
this is very complicated...but the sooner you get good treatment the better your chances of getting better are. you should get copies of those tests yo had done...the first one is probably enough for any llmd to treat you.
read some of the threads at the top for background info
i'm going to pm you that docs number
many others will come here soon i am sure...but you first need to get tx...then start to learn all the stuff about lyme
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
ps-dont go to another neurol or infectious disease doc...or rhematolagist
get to an LLMD
read ILADS.ORG for good info
but mostly use your energy and resources to get to a good lyme doc
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No, it will do no good to see a neurologist (unless one of only 2 in the whole U.S. who is lyme literate).
You need to find an ILADS "educated" lyme literate MD (LLMD). Here's why:
See listener comments, too. They show us how very wrong of the ID (Infectious Disease) doctor who was interviewed. Very typical, though, and why ID doctors, rheumatologists, or neurologists are not the ones who help those with lyme when they don't know anything about it and dismiss it so terribly.
Neurologists & rheumatolgists also follow the same umbrella group (IDSA) that ignores lyme and discounts those who have it. They would share the same opinions as the doctor interviewed above. Important to hear this, though, so you are prepared and know whom to avoid.
posted
post in seeking a doctor, many people have lists of LLMD's in your area. Goog Luck
Posts: 908 | From Albany | Registered: Nov 2008
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posted
Nix on the neuro! You probably DO have Lyme .. and a Dr who doesn't want to treat it.. or who has NO CLUE HOW to treat it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you "feel so helpless and worthless sometimes... " (end quote).
Well, I hope this detail can help you stop that behavior. It's very common to feel and think that way, given the pathological medical abuse that many with chronic illness endure.
This is a pathology with the doctors who are ignorant (in the worse sense of the term) but who are also abusive set up vulnerable patients to feel badly about themselves.
First step: stop. The abuse stops with your not accepting it. But, I know it's hard to erase that from our "hearing" memory. Each time that creeps back in, block it. That was wrong on so many levels. They are abusive and we know that verbal abuse can cut deep.
Do not allow their ignorance and abuse to degrade you. With knowledge comes power, at least the power to better understand that we are not who they think we are. Not at all.
R-E-S-P-E-C-T . . . spell it out . . . sing it out . . . feel it and know that the abuse shops when we stop going to doctors who do that. But, it also means that most doctors are simply not available to us. The entire system is broken. We are out in the cold.
Still, there are many who have learned about lyme. Sadly, insurance industry is part of the problem so we are mostly left on our own to figure it all out.
Find your area lyme support groups for a start.
You do not need another lyme test but do get hard copies of both tests you have - to keep in your possession. A positive test IS positive, especially with your clinical presentation and history.
There is NO test that can ever prove absence of lyme but many negative tests that fail to detect its presence.
If a test determines it's there, though, it's there. Again, especially with your history of symtpoms.
Good luck. Take care. Nurture and Nourish. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
You don't test positive for lyme and not have it. The same way you don't test positive for HIV and not have it.
posted
Yep - sounds like Lyme. My first diagnosis, for 25 years, was fibromyalgia. I had a known tick bite on my foot and can date every symptom.
When I found out my fibro was actually Lyme disease, I contacted as many of my old fibro friends as I could find, and by then, they had found out they had Lyme, and some had co-infections too.
You can also watch the Lyme documentary "Under Our Skin" for free at www.hulu.com and also at Netflix.
Many people in it say they were first diagnosed with fibromyalgia, which means pain in the muscles and is a symptom description, not a cause, like the bacteria are.
The bacteria get into the brain within 12-24 hours of exposure and start to inflame the nerves and spinal cord. They throw off our sleep cycle and our hormonal cycle, etc.
They deprive us of magnesium which is needed for energy and over 300 enzyme reactions. They also can corkscrew into tissue anywhere and initiate inflammation.
The more you learn about these spiral-shaped bacteria and how they operate, the more you will understand the symptoms as well as why treatments work.
So just understand it is them, and not you, and that you don't have to take responsibility for them or what they have done to you.
Your focus needs to be on learning about the condition and the ways it gets treated.
Treatment happens in three categories: deter/kill the bacteria, detox, and fortify the body. You can also use the Search function at the top of the page to type in any word or phrase and archived posts will come up that you can read through. Just keep in mind we're all different when it comes to what will work for us.
I always suggest that anyone google the symptoms for the major co-infections - babesia, bartonella and ehrlichia - to see whether you think you match any of them.
Also, since your first test was positive, if you have a copy of it and can post about it here re which lab, test and results, we can chat about it here. Tests often come back negative too even though we have Lyme, and so for many, it's treated clinically, by history and symptoms.
So, you do not need another neurologist. You need to see a Lyme-treating doctor. Good to read someone already pm'ed you with that info.
Posts: 13117 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Virginia just passed this law:
"The groundbreaking law requires patients to be notified that a negative Lyme test doesn't necessarily mean they don't have Lyme disease."
Sorry, but it looks like you have lyme.
Posts: 2839 | From California | Registered: Jul 2012
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Sorry to say but neurologists and infectious disease specialists are the enemies of lyme patients.
If you come in with a positive lyme test, they don't believe it and test you again until they get a negative. If other tests show positive, they order a spinal tap to get a negative. I lived through it.
What you have to know is that there are 2 "camps" when it comes to lyme disease. First camp believes that lyme is RARE (as in very, very rare, so don't trust a positive lyme test) and EASILY cured.
The majority of U.S. doctors subscribe to these beliefs because they have been mis-educated to believe this by the Infectious Diseases Society of America (IDSA). The IDSA is the group that is SUPPOSED to treat lyme disease.
The other camp is the few doctors who have had lyme disease themselves (or a close family member has had it--child, etc.) and researched it themselves, found out that lyme is more than an epidemic and is extremely difficult to cure.
You will continue to have experiences like the one with the neuro until you get into the camp of people who know the truth about lyme disease.
A Boston TV station investigated lyme disease a few years ago and reported on these 2 camps, plus interviewed lyme patients and lyme doctors. You can view the video here:
We all started out with experiences like yours. Forget these doctors and get with a doctor who truly understands lyme disease and how to treat it. Based on your positive lyme test, you will be treated for your disease.
To learn more about lyme disease, I suggest you read and STUDY the Burrascano Lyme Treatment Guidelines found here:
Look at pages 9-10 where common lyme symptoms are listed. Make a complete list of every single symptom you have and take that to your first appointment with a lyme specialist.
You want a doctor who has treated hundreds or thousands of lyme patients. A doctor whose practice is strictly lyme disease is ideal. You want one who has cured at least 3 people that you know of. Lyme support groups can give you this kind of information. See Support Groups on left side of page.
Posts: 9931 | From Maryland | Registered: Dec 2007
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