posted
Please tell a new member here WHY ID ducks are among the worst possible drs to see for Lyme! Or maybe I should just post the link of the Alligator Pit which is full of ID ducks????
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
from my expereinces
they follow idsa guidlines.if you happen to get a positive test you may get up to 30 days abx and you may have to fight for that....
After that however you magically no longer have lyme disease (even if all your symptoms are exactly the same) now you have what they call post lyme syndrome ...
Now they say you dont need anymore treatment even if extended periods of abx have helped decrease your symptoms in the past.
Coinfections of lyme (babs, bart., erch., myco) hey why should they consider that.... it is only a bunch an infectious diseases transmited by ticks that may require various treatments other than there standard lyme is easy to cure standard.
I have had bad expereinces with id drs. They do not believe that chronic lyme exists...
It basically boils down to this. You will find doctors uninformed about Lyme in any medical field.
I think we pick on ID doctors because we assume that out of all specialties that they would be the ones most knowledgeable about Lyme and they should be! But unfortunately, many of them are not. They just repeat what's written in textbooks.
How many are happy with their primary care doctor or their neurologist or their ER doctor and so on... Ignorance permeates the entire health care system.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
95% of ID drs are NOT Lyme friendly. That's my point. I'm not against any LLMD's who are ID doctors! That is the best of both worlds!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I don't really know Lymetoo 'cause when I tried to get an appt. with the two locals, they said "We Don't Treat Lyme Disease"!
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
There is a local ID duck who supposedly treats Lyme. A LLMD in the area has even been referring patients to him because her practice can't add any more.
I saw this duck a couple of years before my Lyme dx. I was looking for Lyme, in my heart I felt I had it, from all I had read.
I had been told by someone I thought was knowledgeable about LLMD's that he was one of the good guys.
I quickly learned that he didn't use IGeneX, he routinely tests with the ELISA and if it's positive then he'll run a Western Blot. Who knows where he sends it!
I'd had ELISA's before, even PCR's. They're both worthless. I've been ill since I was a kid and my kids are all grown now, so I'm definitely chronic. Of course my tests came back negative. End of discussion with him.
I know of people who see this duck and are being treated for Lyme. I've even heard he uses IV's sometimes.
However, he's not a LLMD, and who knows how may people have been told by this duck that they don't have Lyme when they really do?
Stick with true LLMD's not the wolves in sheep's clothing!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
I think we pick on ID doctors because we assume that out of all specialties that they would be the ones most knowledgeable about Lyme and they should be!
Let me ellaborate on that point. They should know their stuff and they think they do, but are totally ignorant when it comes to Lyme Disease.
posted
I was chatting with a man at Starbucks who ended up being an ID doctor for the military. I told him I needed to find a doctor like him because I suspected Lyme Disease and had just been tested for it ... this was before I knew about LLMD's.
He told me there was a lot of hype about Lyme Disease that I should look into Whipple's Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
I was PROPERLY diagnosed by an IDMD. Several Neuros, Rhuemies and other MDs all said it was in my head or Whipples or Fibro or Perimenopause. A DO and an ID MD ran all the right tests and did an extensive clinical analysis. They were the only ones who would treat me. I wasted years with other MDs, despite my big fat bullseye rashes.
One of our famous local LLMDs couldn't see me for 6 weeks and wanted $700 cash or check up front. My IDMD (who is LL) takes insurance. Thank you!
So, they may be few but they do exist. And yes, it is the best of both worlds.
Posts: 1452 | Registered: Feb 2004
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posted
If it's paid for by insurance, it might be worth a try ... but if he's not open to Lyme, I certainly wouldn't end there ... move on to someone more knowledgable.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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The best thing for this woman to do is to do some research on Lyme and look at the 2 different guidelines and then decide for herself if she wants to be treated by an ID doc who follows the IDSA guidelines or the ILADS one.
We all know that if she chooses the one who follows the IDSA guidelines, she'll more than likely be back asking for a LLMD who follows ILADS.
Either way, she needs to make her own informed decision.
It's probably safe to say that 90-95% of all physicians are ignorant when it comes to Lyme disease.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Either way, she needs to make her own informed decision.
Exactly....and I hope that happens.
Thanks to everyone for their responses!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I was misdiagnosed by TWO IDiots (sorry, that's my own "pet" name for them). If I hadn't known what I had learned on Lymenet, prior to the second one, I can't even imagine what kind of mess I'd be in right now (If I'd even "BE" at all).
The second told me I should no longer have Babesiosis (when I had not been Txd). My experience with IDs has been emotional pain & humiliation. The two that I had been two both seemed to think that they were infallable & beyond reproach.
The first (one of NJ monthly's "Top Docs") never checked for TBDs & convinced me I was a hypochondriac. My CNS systems continued to worsen until I found that it would take me 3 hours to do a 20 minute grocery shopping trip. Why? I have no idea. I couldn't think, focus or remember from one aisle to the next.
I was actually grateful for my more recent tick bite w/bulls-eye that I made sure I promptly got to PCP so she woould see the rash. I was Txd with 2 wks amoxi, which will do nothing for Lyme if there is a coinfection of Babesia. Neither PCP nor ID seemed to know this. I'm guessing that it's not somethey teach in ID school.
OH I have to stop, sorry Tutu. I tried but it's all just too emotionally taxing for me to rehash right now. I've probably got some postings on here that could be found by searching my member # and the word IDiot or IDiots.
I have to go to one for my IV & then go back to LLMDS when I'm done. LLMD has taken me to some good seroconversion on my WB, I'm guessing that will eliminate the burden of proof that seems to go with the ID visit.
IME it seems IDs only believe what is physically tangible. I'd been told I didn't "look sick enough". Meanwhile I made my appt for 2pm because I knew it would take me all day to muster the strength with repeated breaks in between to make myself presentable.
I don't know whether or not an ID, who has condsidered themselves to "specialize" in Treatment of Lyme for a lot of years, may have had more exposure and be better equipped to understand tick-borne diseases. The ID I go to for IV is a "specializes" in Lyme disease, so I'm praying that's the case.
If you google the ID you're going to and find out they're a member of IDSA, I'd be prepared to get a second opinion from a LLMD if they tell you you don't have Lyme. I'd also be prepared to voice over LA-LA-LA-LA-LA in my head if they tell you a lot of BS that you would know is not true.
I would definitely read up before going. ILADS evidence based guidelines, Dr. B's Tx Guidelines. The brochures on LDA's site.
In the case of the second ID, I had to give it a shot because he was covered by my insurance. I ended up opting for someone who really had thorough knowledge of TBDs.
Is this helping? I don't know.
No one could make the decision for me, but having been forewarned and having previously seen a Lyme-Ignorant ID at least I was armed and the ignorance and moronic stupidity and unbelievable arrogance was easier to take, knowing what I was in for.
Just remember if you do decide to go, make sure you've done your homework first. If you are actually fortunate enough to find one of VERY VERY rare IDs (The only one I know of is Dr.J) who seem to understand or even care to, please let the rest here know. That would be really great news.
Just be prepared to be disappointed. You can always come back here & post your results in the pit if you need too and then move forward from there.
Best wishes, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I can count on one hand the ID doctors who are Lyme literate. Bless their hearts.
The rest aren't just NOT Lyme literate.. I think they are evil and/or stupid.. in that order.
I use to mistakenly think they were just really stupid.. but I finally came to the conclusion that NO ONE can be THAT stupid.
And after trying for years to get them to be even close to the same page we are on so they can HELP us... I've learned they KNOW better.
They are purposely NOT helping us and doing all they can to discredit us. They are even getting doctors to threaten "neutral doctors" if they treat using ILADS guidelines.
They have trashed us (patients and doctors alike) unmercifully to protect their interests for YEARS!!!
They testify against us in court... testify against our doctors... say things like "you could send a bottle of coke to Igenex and it would test positive for Lyme"... etc.
They make fun of us, tried to get us declared mentally ill by saying we have "antibiotic seeking behavior"... and many are so deep in trouble they refuse to see us as patients all together.
Bottom line..
If they were right... we wouldn't all be in this boat.
Of course this is MY opinion and I am not a doctor.
quote:Originally posted by adamm: The ID schmuck I saw didn't even know ticks could
transmit bartonella (the most common tick-borne
pathogen)!
Not to step on any toes, but Borrelia burgdorferi, the bacteria that causes Lyme disease, is the most common tick-borne pathogen.
That's why it's mindboggling why more isn't being done to prevent & treat it.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
ID doctors are generally members of IDSA which means they have been receiving large amounts of propaganda on the IDSA guidelines, claiming there is no chronic Lyme and limiting treatment to 28 days.
However, I would not term it ID vs. LLMD. I would term it non-LLMD vs. LLMD.
My worst ID doc story was a doctor pulling a tape measure out and measuring my legs, without making any adjustments to make sure my hips were level nor adjusting for my inability to straighten my leg, and telling me one leg was longer than the other.
However, I do find that doctors that see the effects of Lyme, the ones who end up treating people for symptoms, understand the seriousness. I've had good experiences with a pain specialist, a neurologist and a psychologist who specializes in pain who understand how destructive Lyme is. But they know nothing about treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Beachcomber, that's amazing that you had the privilege of having a proper experience with an ID doctor. That's the way it should be. They are supposed to be specialists in infectious disease.
I don't think there's any excuse for their behavior. It's their job to know what's going on, and if they're not going to do it, they should all be fired and as far as I'm concerned,lose their medical licenses. 'Cause they're making us do all the work to figure out what's going on and what to do about it.
The couple ID ducks I saw here were, as Tincup said, purposely obstructive. It's unbelievable and wrong to do this to humanity who comes to them for medical help.
The last one I saw, I was ready for. Within ten seconds of him saying there's not much Lyme in California, he found himself holding a handful of California Lyme brochures I had waiting in my hand. Then he knew I wasn't the usual ignorant patient and we called it quits, with me suggesting that he read them and get educated about what's going on in our state.
I look forward to the day when doctors feel safe enough -- ie, won't be punished by insurance companies -- to do their job right.
Posts: 13116 | From San Francisco | Registered: May 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by Aniek: ID doctors are generally members of IDSA which means they have been receiving large amounts of propaganda on the IDSA guidelines, claiming there is no chronic Lyme and limiting treatment to 28 days.
However, I would not term it ID vs. LLMD. I would term it non-LLMD vs. LLMD.
I definitely agree with this.
I think perhaps there is a greater likelihood of a caring family practitioner in a Lyme-endemic area becoming LL by trying to figure out how to Tx the volumes of patients that have been misDxd & misTxd by IDSA Drs.
Those family practitioners would not have the IDSA views shoved down their throats with the same peer pressure as IDSA member ID Drs.
I really have to admire Dr. J for being able to rise above that peer pressure and take the time & effort to research, on his own, other opinions and the scientific research that supports a different view than is subscribed to my the organization he is affiliated with.
Of course, he may not be the only one capable of rising above the IDSA spew, but while Txing many other complicated diseases I have to imagine that's no easy task.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
My LLMD in NYC who was recommended by DR J in Ct office - doesnt believe in NOT treating lyme.
He refuses to give up on helping me and for that I am grateful.
He has been treating me for 2 years now.
I know he is an exception though in regards to IDs.
Posts: 28 | From long island ny | Registered: Jun 2007
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Peacemom:
No, your ID Doc is an exception in all medical disciplines, not just ID. The point that some here are making is that there are LLMDs and there are non-LLMDs. You and I happen to see IDLLMDs (that's a mouthful).
I think it is narrow thinking to suggest that the IDs are the worst. I can't even count anymore how many Lyme Specialists I was sent to who did not know how to diagnose and treat this disease, other than to recommend 28 days of Doxy.
We naturally expect an infectious disease MD to know how/what to do. I think that is why we are hard on all of them. I admit to seeing one who said I was clearly positive but felt I had been treated long enough. So..........I moved on.
It takes time and dedicated research to get the right help. WE are in charge of our health care. We have all the power and the right to seek out and get what we feel is appropriate support. If I had given up and listened to the many MDs I saw before finding my ID doc, I would still be in bed and unable to form sentences when I spoke.
Lymetoo, please support the member you speak of by guiding him/her to research the available MDs to him/her and to follow informed intuition. We don't really help people by generalizing about one group of specialists. It has to be based on individual credentials and record with Lyme treatment. There are "idiots" & "ducks" in all fields. I don't find some of this discussion to be helpful, other than to let people vent.
I'll move along now. Keep thinking positively, please.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by beachcomber: I was PROPERLY diagnosed by an IDMD. Several Neuros, Rhuemies and other MDs all said it was in my head or Whipples or Fibro or Perimenopause. A DO and an ID MD ran all the right tests and did an extensive clinical analysis. They were the only ones who would treat me. I wasted years with other MDs, despite my big fat bullseye rashes.
One of our famous local LLMDs couldn't see me for 6 weeks and wanted $700 cash or check up front. My IDMD (who is LL) takes insurance. Thank you!
So, they may be few but they do exist. And yes, it is the best of both worlds.
This is absolutely amazing! That's the way it SHOULD be AND the way we all wish it WOULD be. Maybe there is some hope for IDs after all. I'd really like to know who and where this LLIDMD is. I hope maybe I'll be luckly and he'll be the one my LLMD is sending me to for IV.
You weren't CDC positive on your tests, by any chance, were you? Did you have any complicated co-infections? Did you actually have any CNS symptoms? How long did you or have you been Txg and are you well?
Oh please tell me the LLIDMD is in NJ! This sounds too good to be true! I tried so hard to find a LLIDMD who would take insurance, so my PCP could refer me to someone who would know what they were doing and I could get coverage.
He's probably not around here, or I'm sure you would have offered his name to others in NJ area who were looking. If he is NY/NJ/PA, could you please PM me his info because I'm not sure how much longer I can go before my creditors come to take my house. My LLMD only charged $350 for my first (1 hour) visit, but it still adds up.
I'm sure that TuTu and Betty would also love to be able to recommend this ID to those looking for help in "Seeking Doctors".
I wonder if those who are fortunate enough to stumble across this RARE breed of LLIDMD usually don't end up here looking for help or don't bother coming back to offer info to others who are struggling.???
I mean, I suppose it IS possible, but having read SO many horror stories of emotional pain and humiliation inflicted (often seemingly with some twisted sense of obligation) by non-LLIDMDs, it's really hard to imagine many LLIDs could exist.
Peacemom & beachcomber, your other replies were posted while I was working on this. Could you both possibly PM me with info, please. I would travel to NY if need be and I'd love to be able to recommend LLIDs to those who are looking for help.
It is true that Lyme-Literacy is a rare commodity in any field of medicine. It is often hard to find an MD who would take the possibility seriously enough to refer you to an ID.
I had sidestepped an ignorant MD to go to the first ID because the MD thought he was "up on his psych" and that the need for anti-depressants for a chemical imbalance was "nothing to be ashamed of". Unfortunately the ID I chose to go to was equally Lyme-ignorant.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
the infec doc i went to said "we've never been able to duplicate igenex testing. i think it's because they do it for money and the more testing, the more money they get."
she would not even consider the igenex results and used QUEST!!!!! the worst lab for lyme testing in my opinion.
however, she did give me antibiotics for almost a year and then refused to give me more, because as she said "i never believed you had lyme in the first place."
stupid ___itch....i could have strangled her (one of my lyme rage moments i guess). but to give her credit, at least i got treated for one year.
don't even bother with infec doc.
she later told me a guy came in WITH the er rash but it cleared up "so he couldn't possibly have lyme." DUH>>>>>
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Tutu, I think it is very difficult to adequately explain all of this to someone that is new to the diseases. It is all too overwhelming.
Maybe someone could come up with a few important issues and forward to use for new patients to question potential drs.
Such as: do you have any patients that have chronic Lyme disease and have needed long term antibiotics? What Lyme disease tests do you administer and what labs do you send them to for evaluation? Have you seen and treated any of the co-infections, such as Bartonella, Babesosis, ehylichiosis, etc?
This may not be a good example but something along these lines may help if you didn't ask a llmd and they freak worrying it might be a trap.
My daughter's DO was a duck and did offer up that he had "A" patient that he was treating for Lyme disease. Looking back that should have been a red flag. Our area is endemic. So he is potentially missing hundreds of cases by calling them fibro..
When an ID speaks he lets everyone know that all ID's follow the IDSA guidelines. Some 8000 of them. Just heard that in the PA Senate hearing last Friday. Soooooo if ID's are not following their recommended protocol,(and I commend them for it) they need to develop more backbone and fight these guidelines, and not sit there silently.
Maybe they are afraid the witch hunt will turn to them.
My daughter's LLMD says it is the most facinating new info she has seen and she can't grasp why they(the ID's) are not jumping all over it to do research. (As opposed to trying to prove that their present stance is the gold standard)
I am of course not a DR, but I just don't like DUCK!!
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
I wonder how many silent IDs there are, knowing what their organization is doing is wrong? I wonder how long it's going to take before some start to show some backbone and offer some leadership in the right direction?
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by beachcomber: Lymetoo, please support the member you speak of by guiding him/her to research the available MDs to him/her and to follow informed intuition.
That's what the two of us have been working on. She was headed for someone referred to her by the ALDF. Of course, that scares the life out of me!!
Thanks for all the input, everyone. I'm sure it's helping her decide what to do. I think it's hard to trust just one person (me).
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by lymemomtooo: My daughter's LLMD says it is the most facinating new info she has seen and she can't grasp why they(the ID's) are not jumping all over it to do research.
I'm sorry....Research on what?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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