I had a doctors appointment at the Cleveland Clinic yesterday. The doctor says he still cant find anything wrong (2nd MRI, blood work). I explained to him I still had the burning in the knees and the hips as well as weakness in my arm.
I asked him if this could be Lyme and he stated my blood test for Lyme six months ago came back negative. I told to him about what I learned about Lyme and that many people had a hard time getting diagnosed with Lyme until they saw LLMD. After seeing an LLMD they were diagnosed and given antibidics and that quite a few began feeling better or atleast had relief from their symptoms.
His reply was very interesting but probably not shocking. Now let me start by saying I think this doctor is in his early 70's. His response was that alot of people go to these Lyme Clinics with no positive blood work and they go in and describe their symptoms and come out with a Lyme diagnoses with no medical backing on the DX. He kinda chuckled and then said he would test me again for Lyme. I asked what test and he said a Lyme antibody test.
The only other thing he could tell me was that my CT scan of my chest came back and that a Lymph nod in my chest was irregular and that he would wait until next month to test it again and see if there was any change. He also took 20 vials of blood to look at other not normal things they would typically look for.
So I still have no diagnoses and am in the process of finding a LLMD atleast to talk to.
Once again thanks for listening 2332
Posts: 10 | From Delaware Ohio | Registered: Feb 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
BARTONELLA AND VIRUS'S MESS WITH LYMPTH GLANDS SO DOES LYME. GET A LLMD Sorry just saw the caps locked.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I noticed from your earlier post HERE that you got some very good advice. Your description of your symptoms on that thread sound like they could be Lyme, but I am not a doctor.
Lyme disease is often confused with MS. Some think that MS may in fact be a form of late Lyme disease -- they occur in the same geographic regions, share many symptoms. But many doctors (including the authors of the IDSA guidelines) have not seen enough clear-cut cases of neurologic Lyme to be able to distinguish the not-so-clear ones.
This is where the LLMD comes in. No, the ones I have worked with don't "diagnose everyone" with Lyme, but they have experience with many different disease presentations.
Let me put it another way. If an LLMD decides that you might indeed have Lyme, you might be prescribed oral antibiotics. They might help, and if it's not Lyme, they might not help, but the risk of harm is small. Beats what you're getting now, which is nothing.
Cleveland Clinic is an excellent hospital, one of the best in the country for heart problems. But Lyme is an "emerging" disease (new), and the science on it is still unfolding.
You might consider (if you haven't already) keeping a log of symptoms, and having your wife accompany you on consults. When you're depressed and confused, it is hard to remember everything you want to tell your doctors, but bringing all your symptoms to their attention may just aid in the diagnosis.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:His response was that alot of people go to these Lyme Clinics with no positive blood work and they go in and describe their symptoms and come out with a Lyme diagnoses with no medical backing on the DX. He kinda chuckled and then said he would test me again for Lyme. I asked what test and he said a Lyme antibody test.
I should be used to reading these accounts by now.
It should no longer have the power to pi$$ me off.
But it does.
The prestigious Johns Hopkins recently declared in a peer reviewed study that the ELISA (your doc's choice of test) is up to 75% unreliable.
In another study, the ELISA test missed 56% of confirmed Lyme patients (Archives of Internal Medicine 15:761-0763, 1992).
In yet another study (is anyone listening??), it missed over 70% of people with early Lyme disease, and 46% with late lyme. (Laboratory Medicine 21:299-304, 1990).
These are peer-reviewed studies and medical journals.
One reason the ELISA test continues to be used widely to exclude a lyme diagnosis is because the CDC itself continues to demand doctors adhere to the two-step testing protocol, i.e., you must have a positive ELISA before getting a better western blot.
Why does the CDC still keep this ridiculous mandate despite ample evidence of the sheer worthlessness of the test?
Because they do not really want to know how many people have lyme disease, and are content to let people routinely get misdiagnosed as having a few dozen other illnesses.
Fortunately, thanks to the internet, we as patients can educate ourselves.
"Seronegative" lyme, as your doctor was sneeringly referring to, is no joke. It's a measure of his ignorance that he doesn't know anything about it. If he's not too old to get on a computer, perhaps he can Google 'seronegative lyme disease' or type the words into PubMed. I'd list the studies here but there are just too many.
As you've found out, you HAVE to go to an LLMD. Some people get lucky and find a doctor who will learn about lyme and treat them. For most, that's not the case.
These doctors make jokes about lyme disease to cover up their ignorance. Take the time to learn everything you can about lyme, then find an LLMD. Yes, it's going to cost and it's unlikely your insurance will pay for it. Yes, it's a crime that doctors remain so hostile to evolving science. But, as you've seen, that is the case. Take charge yourself.
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
stop wasting your precious time going to other doctors. as I said in my answer to your other post:
"only an LLMD can diagnose lyme correctly. most other doctors (primaries, neurologists, infectious disease) do not know enough about lyme and are not going to diagnose it.
many people are misdiagnosed even with the bullseye rash and positive tests. most doctors are very reluctant to diagnose lyme and even more reluctant to treat it"
Trust me, I know exactly how you feel. You have been shoved around from doctor to doctor. I was shoved around to various specialists for 10 years.
I had heard of the lyme controversy. but who was I going to believe? My doctors who have the degrees? or some people on a bulletin board? I decided to go with the doctors.
after 9 years of untreated lyme disease, I ended up in the hospital with heart failure, pericarditis, meningitis, and almost died. I figured, "Ok, NOW they will get to the bottom of this. NOW they will diagnose me correctly. they cannot POSSIBLY say its all in my head or its old age (I was 40)
I was wrong. they patched me up, sent me home, and said it was "just a virus" even tho I had gotten better on 2 days of IV antibiotic "just in case"
they looked for MS, ALS, and several other diagnosis, but didn't treat for anything
since then I have continued to go downhill. for the first 2 years i was still pretty active, went on pain meds to keep going. my spine began to disintegrate on the MRI's. I started having fevers and sweats.
the best specialists at hopkins would not help me. I told them everytime i went on antibiotic my fevers went away, but would return as soon as I stopped them. they still did nothing.
I waited until I was bedridden and desperate before finally going to the LLMD. I was also afraid of the cost.
I went to the LLMD in august and I am on treatment and getting better. the cost is not bad, my insurance has reimbursed it as an out-of-network doctor, and all my medicines are covered.
I am finally convinced. Being a scientist, I know how to read and interpret research papers, so I decided to look into the "lyme controversy"
I was disgusted at what I found. the lyme doctors were right all along. the IDSA is corrupt. all of the research shows that lyme tests are about 30% accurate, and people with our symptoms get better on antibiotics.
i dont know whats up with the IDSA. they either are out to make money somehow, or they know something we don't know about lyme and they are not revealing it, or they are afraid of giving out to much antibiotics and willing to sacrifice us for some greater cause, because there is no scientific articles to back up their claims.
don't waste anymore of your time. dont wait until you are bedridden like I was. A wise person learns from the mistakes of others, because you won't live long enough to make all the mistakes yourself.
Posts: 615 | From maryland | Registered: Oct 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
2332. i was pretty sure if i sent you llmd info i emphasized this one....
do NOT go to CLEVELAND CLINIC ...BAD FOR LYMIES! ***********************************************
you do have a good infectious dr. in your city who is on our list!!
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tailz
Unregistered
posted
A friend of mine has a non-LLMD in the area who has been treating her Lyme for years (her husband died of complications), but when I'd called to make an appointment with this doctor, as soon as I'd mentioned Lyme, they told me they would have to get back to me.
When they did, they explained that Lyme was just "too complicated" for them to treat - and I had a positive! Keep in mind I did not mention that I knew for a fact that this doctor was already treating my friend for Lyme.
That ought to show you right there that doctors will indeed sacrifice you if they think that their own livelihood is somehow threatened.
An ID doctor was even worse. I had checked off every symptom on his intake list with the exception of enlarged prostate, and like roro, thought that there was no way that he could POSSIBLY send me away without antibiotics.
"Your symptoms are not consistent with Lyme. I see no reason to give you antibiotics."
If the 50 symptoms I had checked off were not symptoms of Lyme, then what ARE the symptoms of Lyme? I went off on him, and he quietly excused himself, almost like I hadn't been the first to do so.
One doctor wrote in my records, "Patient looks older than stated age." Yeah, I'll bet I did. I weighed 88 lbs, my pelvic bones had trouble holding a size 3 on my hips, was in menopause at 41, was losing bone density, eyebrows, couldn't breathe, my liver was screaming, my heart was blocked, my body was so toxic that by the time I'd found a doctor and had started treatment, my liver enzymes had shot through the roof after less than a week of infusions.
See an LLMD, and keep in mind that all "LLMDs" are not Lyme literate. If they give me that evil chuckle when I mention something I've read on the internet, my blood pressure goes up.
After what I've been through, I would sooner believe a stranger on the internet than the doctors who are being taught all about Lyme by today's medical schools and "experts".
I don't think this is just an insurance issue either. I think the government is somehow involved in this epidemic.
The day I wait for is the day when Lyme can no longer be denied - when so many people have it that they have to listen. With the dying bees and now bats, that's just around the corner.
And personally I can't wait to SPIT on all those who have played a role in my nightmare - from the doctors who smiled and said, "Everything comes back normal - it's all in your head. I strongly suggest you take something if it is offered (Cymbalta)" - to the doctors who hung up on me - to the doctors who fired me - to the "respected" medical journals.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sorry 2332, you should of gone into his office in uniform and threatened to arrest him unless he used his teeny tiny brain. Just joking, it probably wouldn't of helped. After all we know that doctors are the smartest people on earth?
Like some have already told you, it doesn't surprise most of us how you were treated or not treated. You have been quacked. We call them ducks and ducks quack.
You didn't use your voice and skills that said I'm in charge here and you will do what is in the best interest of everyone involved. I believe it's in my best interest for you to put me on abx such as doxy as the "good book" medical book states. Because there is a chance that I have some tick borne illness that my research and symptoms are matching.
You may continue with any test that you think necessary to rule out other things. Tell him you are thankful for that logic. But in the meantime you are going to put me on an abx to see if my illness and these horrible symptoms can be eliminated by doxy.
You may tell him that your career is important to you. You are no use to the force the way you are feeling and have been feeling for too long now. You are not willing to take a wait and see more test more waiting while the possibilty of a tick borne illness disables you.
All of this can be said to any doctor in such a manner that they know you are holding them accountable for your health and well being. After all what's a simple 6 week dose of doxy 300-400 mg a day going to hurt?
You won't become a doxy addict. You won't be dealing doxy off the street. You might even get lucky and be one of the people that 6 weeks of doxy and you are back to your old self happen to????????
Sorry, originally I thought you were a woman officer. I know now you are a male. I wish you luck. You really are in charge of your health care. You just need to make this 70 yr old or another doc maybe younger understand enough to give you some abx.
The waiting game is more dangerous than 6 weeks of doxy.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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