posted
Hi all, I had my follow up neuro appt because my pcp wanted me to go. He said well everything is normal after last time he noted some neuro damage.
This time he said that " Anxiety can cause numbness in the extremeties." I looked at him like he had two heads...rolled my eyes and laughed out loud.I couldn't help it! So guess my offical diagnosis is "Anxiety." Thank god cause I thought it was something serious!
Then he asked me if I wanted anything for it. I said no. Now I'm kicking myself wish I should have asked for a prescription for Lorezapam's.
Then he wanted to see me back in 6 months I felt like saying for what? If I have anxiety shouldn't you be sending me to a psychiatrist...LOL
The sad thing is they say this crap to people and people believe it! I think I will keep that appt. in August and tell him what I really have Neuroborellosis(sp) and give him "under our skin"!
-------------------- If you keep doing nothing...nothing changes!
One said I had a pinched nerve or something in my arm and to get therapy.
The other said I had restless leg syndrome.
Mind you I gave them both a long list of symptoms!
I think they just pick one of them and make a "diagnosis" just to make you happy.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I could learn to say "it's anxiety" without having to spend years and years in medical school. It's an easy answer. Keeps them from having to really think. Makes them look pretty dumb.
Obviously they don't want to have to think or research too hard, to come up with real answers.
Its arrogant!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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-------------------- May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen. Posts: 341 | From Columbia, MD | Registered: Jan 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Lymeherx, I had to check where you're from; that's basically what my neuro did.
Then on the follow up (after one MRI), he said something to the extent of "Neurologically, there's nothing I can tell you. i can't find anything wrong. Maybe you should follow your doctor's advice and see a psychiatrist."
When I suggested the possibility of Lyme, he got really arrogant and said, "I have seen people with Lyme Disease. YOU do NOT have Lyme Disease."
I should have had my LLMD send him a copy of my dx sheet, but I didn't want to waste any more time, paper or postage on him.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Neurologists are one of the highest paid, too. What joke. Heathcare is broken. Needs to be exposed as a money maker for the greedy. I tested positive for Babs, yet when I tell the ducks they blow it off because they've never heard of it.
Posts: 111 | From Mid Michigan | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Starfall,
You said: "I should have had my LLMD send him a copy of my dx sheet, but I didn't want to waste any more time, paper or postage on him."
-- that still would just be used to line his hamster cage. I've shown my results for 3 TBD to many doctors. They look like I've just handled them a nursery rhyme.
===========
I had a rheumatologist dx me as bi-polar because I filled in too many symptoms on the question form.
He said someone with just fibromyalgia would not have that much energy to complete the form so that I must have been manic.
But, since I was also crying in his office, he determined it was bi-polar.
(BTW, as understandable as it is, crying is simply the kiss of death for your medical chart.)
that wrong dx ruined any chance for any doctor to ever look at me seriously again. It helped get me kicked out of two ERs when seizures hit because they thought I was "acting out" and "trying to throw myself off the table"
- And I am about the most calm and collected person I know.
I've also seen many neurologists who said things like: "you're overweight. That's why your balance is so bad" or "you think you have trouble walking, go look at that patient up front in a wheel chair. Now SHE has trouble walking. Not YOU !"
==
I try very hard here to warn new posters that unless a doctor is ILADS-educated, it is not only a waste of time and money but, ususally, can ruin one's medical file forever to see those who know nothing about lyme or other chronic stealth infections.
And, if one need a specialist, it is best to get a referral from a LLMD who KNOWS that doctor.
Through my journey through my mystery illness, EVERY doc I seen would humor me through testing and when it wasnt black and white for them....their dx was aniexty. I knew it wasnt so thats why I kept fighting along with probably everyone in here. Its sad, I realize that most docs read the tests and if its not plain and simple, you get wrote off. Atleast I did and made to suffer longer like everyone in here. Sad sad!
Posts: 171 | From the land of oz | Registered: Feb 2009
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posted
Neurologists are right up there with ID and rhummy quacks. I had one tell me there is no lyme in this state. If I had Lyme my knees would be as big as basketballs and I would have crippling arthritis. I said "is that what it said in your two paragraphs on lyme in your med school book."
When I asked him what is causing my creaking joints, stiff neck, and tingling in extremities, he said stress or ALS. Real genius there, ALS before Lyme get real which one is more common.
Posts: 649 | From United States | Registered: Dec 2003
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"Come on Doc, is that the best line of crap you can come up with at this moment?"
I almost can't help it. I don't normally cry, but when I start to tell them how bad I feel, and then I get all upset because I know they are going to say, "you are depressed" because that is what every single doctor I see has said. I wish I could go in there and not CRY!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
Yep neuro's are some of the worst. I was told my herx on antibiotics was probably an "allergic reaction".
When you have loads of people referred to you from Infectious diseases with neuro symptoms after being diagnosed with lyme and treated "accordingly" would you not think to put 2 and 2 together.
They know!! They have to know!! A monkey could see whats going on.
Its not like I am talking about Connecticut. This is frickin Dublin. Apparently it does not exist here at all even though I have a published study done by scientists at UCD showing 25% of ticks collected in Ireland tested positive for borrelia.
That was several years ago. Its probably higher now. Sorry bit of a rant off topic but i am in that mood tonight.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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lakes592,
I am really sorry that you did not get a warning about this. Usually, if someone here posts that they have an upcoming appointment, someone will try to get some answers from you about that doctor's knowledge base and help guide you.
Somehow, that must have been missed.
=============================
This pushes a few buttons for me, so, I feel some steam coming:
We have to start looking at the way this is set up. Expertise is great and, if that is truly there, I will give my respect and money - and yield my power to their opinion. I will not give up my power but I will rev down my own ego or agenda in hopes of learning from them.
However, when expertise is not there in an "expert" and respect, power and money is still tossed their way, the dysfunctional relationship has to stop. This is a form of abuse.
It's really a sick system the way this is set up and patients perpetuate it as long as we continue to pay for incompetence in bad doctors and be so very deeply stung by their insults.
We cannot, apparently, educate most doctors about lyme becaue most of them really have very low respect for the intelligence of their patients and most seem incapable of learning anything new or very complex - or different from the murky mainstream.
But we can simply avoid those who are uneducated and, especially, divorce those who are abusive with their position of power.
And, for the doctors who are seemingly unaware, we still can avoid a professional relationship that would revolve around neglect and negligence, which is an abusive of power in the outcome.
We can vote with our pocketbooks. We can vote with our bodies. We can stand up and walk only into doctors' offices who are fully educated in the matters we require for their consult.
And since this all boils down to "PollyAnna speak" in practical matters if we have no good doctor, we, then, have to figure out how best to take care of ourselves otherwise.
Sure, it'd be great if we all had the brilliant doctors we'd hoped for to help us regain health. But, if not, that's no call to settle for less. We just have to learn more.
-
[ 04-08-2009, 06:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
It is simply amazing! Thanks for the notes guys. I was warned I think that was why I laughed...I was thinking you didn't just go there. I was giving him the benefit of the doubt.
I will keep the appt. in August...Tell him what I actually have. Give him the under our skin dvd and on my way out slip some LDA brochures in the boxes...LOL That will make me feel alittle better even if it doesn't get me anywhere!
Also,I wanted to tell him you realize I have no insurance and you are only getting paid $20 to see me (Seacare program in NH) so if it is anxiety why would you even want to see me again and why would you order an MRI?
Take Care, Ann
-------------------- If you keep doing nothing...nothing changes!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm glad you were at least forewarned, Lakes!! Those who don't know in advance the usual scenario can be just floored to find out there's nothing wrong with them after all. Imagine how many people DO believe these nutjobs.
Here's a link to a fine thread which should be kept alive just for the amusement value:
posted
An appt with a horrible neuro was what brought me here to lymenet.
I messed up by crying right away. I know it's a mistake, but I felt so terrible I couldn't help it.
He immediately looked like he wanted to run to the nearest exit.
I handed him a list of my symptoms, which he put on the desk without even looking at it.
I asked him if I could have MS, and he laughed (LAUGHED!) and said no.
I told him I tested positive for Lyme a couple of years ago and have never been treated for it, and he actually got mad at me.
He said "You don't have Lyme Disease. You're just depressed."
He gave me a script for Cymbalta and walked out of the room, letting the door close right in my face.
I cried so hard after that visit that I had a headache for the next several days.
Thanks to him, though, I started looking into it on my own and here I am.
I was thinking about going back to him when I have a treatment plan in place, just to show him I'm not nuts, but I don't think he'd even care.
What a waste of a medical license.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
My neuro told me I was manifesting symptoms because I had read about lyme disease. I guess ignorance is bliss, if you don't read about a disease, you won't get it! Silly me! I thought we were supposed to learn about our illnesses. There's even workshops for Diabetes and such!
posted
Michelle thanks for that link...I love the long hair story my god...And the title! Well at least I'm not the only one who looked at a doctor like he was nuts. He wasn't laughing at me but I was sure laughing at him...clown!
-------------------- If you keep doing nothing...nothing changes!
Just FYI, the same authors who wrote the flawed Lyme Treatment IDSA Guidelines, also took part in ghost writing Lyme Treatment Guidelines for the American Academy of Neurology, which is the governing medical board for neurologists.
Therefore it is just as difficult to find a Lyme Literate Neurologist these days as it is to find a Lyme Literate Infectious Disease doc.
This is why it is advised to seek the medical services of either an ILADS doctor or at least a doctor who is Lyme Literate.
IDSA sought to portray a second set of Lyme disease guidelines issued by the American Academy of Neurology (AAN) as independently corroborating its findings. In fact, IDSA knew that the two panels shared key members, including the respective panel chairmen and were working on both sets of guidelines a the same time -- a violation of IDSA's conflicts of interest policy.
The resulting IDSA and AAN guidelines not only reached the same conclusions regarding the non-existence of chronic Lyme disease, their reasoning at times used strikingly similar language. Both entities, for example, dubbed symptoms persisting after treatment "Post-Lyme Syndrome" and defined it the same way.
When IDSA learned of the improper links between its panel and the AAN's panel, instead of enforcing its conflict of interest policy, it aggressively sought the AAN's endorsement to "strengthen" its guidelines' impact. The AAN panel -- particularly members who also served on the IDSA panel -- worked equally hard to win AAN's backing of IDSA's conclusions.
The two entities sought to portray each other's guidelines as separate and independent when the facts call into question that contention.
The IDSA subsequently cited AAN's supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.
In a step that the British Medical Journal deemed "unusual," the IDSA included in its Lyme guidelines a statement calling them "voluntary" with "the ultimate determination of their application to be made by the physician in light of each patient's individual circumstances." In fact, United Healthcare, Health Net, Blue Cross of California, Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment.
[click on above link for more info]
Posts: 503 | From Maryland | Registered: Oct 2007
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PRACTICE PARAMETER: TREATMENT OF NERVOUS SYSTEM LYME DISEASE (AN EVIDENCE-BASED REVIEW): REPORT OF THE QUALITY STANDARDS SUBCOMMITTEE OF THE AMERICAN ACADEMY OF NEUROLOGY Neurology 2008;70;1719-1720
To the Editor: We wish to point out a serious ethical problem with the recently adopted Lyme disease treatment guidelines of the American Academy of Neurology (AAN).1
These guidelines have been touted as an ndependent corroboration'' of the Lyme guidelines published by the Infectious Diseases Society of America (IDSA) in November 2006.2 Nothing could be further from the truth. The IDSA and AAN guidelines committees were clearly not independent in terms of personnel or philosophy.
The AAN guidelines were put together by a committee of nine members, three of whom also served on the IDSA Lyme guidelines panel, including the chairman of each committee.
The overlapping chairs virtually assured that the form and substance of the AAN guidelines would be like-minded--essentially a repackaging of the IDSA guidelines--by controlling the panel selection and scope of the process. AAN published its guidelines after the Attorney General of Connecticut launched an unprecedented investigation into potential anti-trust violations in the IDSA guidelines formulation.
The AAN guidelines were, not surprisingly, quickly endorsed by IDSA and presented to the medical community as ``independent corroboration'' despite the overlapping panels and questions raised by the Connecticut investigation.
Thus the timing of the AAN guidelines and the IDSA endorsement compounded the conflict of interest for both organizations. Two medical societies, IDSA and the International Lyme and Associated Diseases Society (ILADS), have published peer-reviewed, evidence based guidelines listed by the government sponsored National Guidelines Clearinghouse and offering divergent treatment approaches for Lyme disease.2,3
Under the IDSA guidelines recapitulated by AAN, patients who fail to respond to the IDSA protocols are denied longer antibiotic treatment. In contrast, the ILADS guidelines consider these patients to have chronic Lyme disease and provide the only viable treatment option for them.
The conflicting guidelines have established two standards of care for Lyme disease.4 Responsible medical societies have an obligation to acknowledge scientific uncertainty and lack of consensus when controversy exists regarding the treatment of medical conditions such as tick-borne diseases.4
It is unacceptable to repackage the beleaguered guidelines of another medical society and allow overlapping panel members with clear conflicts of interest to control the process.
To ignore the conflicts of interest in these circumstances represents a serious ethical breach that discredits AAN and misleads the broader medical community, which relies on the ethical accountability of guidelines panels.5
Raphael B. Stricker, Lorraine Johnson, San Francisco, CA
Disclosure: The authors report no conflicts of interest.
1. Halperin JJ, Shapiro ED, Logigian E, et al. Practice parameter:
treatment of nervous system Lyme disease (an
evidence-based review): Report of the Quality Standards
Subcommittee of the American Academy of Neurology.
Neurology 2007;69:91-102.
2. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical
assessment, treatment, and prevention of Lyme disease,
human granulocytic anaplasmosis, and babesiosis:
clinical practice guidelines by the Infectious Diseases Society
of America. Clin Infect Dis 2006;41:1089-1134.
3. Cameron D, Gaito A, Harris N, et al, and the ILADS
Working Group. Evidence-based guidelines for the
management of Lyme disease. Expert Rev Anti-Infect
Ther 2004;2(1 suppl):S1-13.
4. Johnson L, Stricker RB. Treatment of Lyme disease: a
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