Just writing because I made the mistake of seeing an Infectious Disease doctor recently after my general md's recommendation...it was an awful experience! I'm not saying that all ID docs are that way, but I was completly dumbfounded by his responses to my questions.

I have been tested by MDL and came up equiv. twice, positive on my IGG and IGM with Igenex and of course my labwork from Labcorp came back negative. He basically took my MDL results and Igenex results and discarded both saying that they are not certified labs and their results aren't even recognized by the ID community.

He then went on to examine me and said that there was no way that I had lyme because I had no swelling or pain in my joints. (Meanwhile most of my symptoms have been neuro!!!)

Finally, I told him that previously when I had taken abx. that I often times felt worse or exaggerated symptoms and he said that if it were lyme the abx. would make me feel better!!!

And lastly...I asked him of the possibility that it could be herxing and he told me that there's no such thing as a herx in the middle of abx that it is the first day of the introduction of a nex abx.

Unfortunately, the visit to his office really burst my bubble...after finally having a + test from Igenex I believed that I would be taken seriously, but that's not the case.

He basically told me that I could see a neurologist, Dr. H in Long Island to have some cognitive testing done to see if it might be neuro lyme, and sent me on my way.

What an awful experience!!! I wouldn't recommend an ID doc if you don't have a + test from Labcorp or Quest or the classic swollen, red hot joints because that's all that he was looking for.

I'm so frustrated...any suggestions??? I've been seeing a LLMD in my area and the ID doc bashed him during my visit also...now I'm confused and worried.

Any advice would be greatly appreciated!

Looks like you got beaten with an IDiot stick!

Join the club!

What a DOPE he is... and you can tell him I said so if you want.

Sorry this happened to you.

These buttheads are such a HUGE PAIN in the back side.. it ain't funny.

It is shameful that they are even allowed to live on this planet!

How STUPID can one human be?

ID DUCKS are total IDiots.. and evil too.

They are suppose to have the brain power to absorb this stuff.. and instead they waste their powers on seeing just how IGNORANT they can be and still make money doing it.

Drop the fool like a hot potato.

Then stomp on him.

Cause he just wasted your time.. your money.. and set the average human IQ back another 70 points.

Have you been to our Alligator Pit?

I suggest you visit there.. with him in tow.

And then... forget about him.. forget about how stupid he is.. and how badly you were treated.

Follow your heart... and do what YOU know is right for YOU.

And when the time comes... vote to extend the duck season.

Also.. be PRO active in the Lyme political movement. The only way to beat the ducks is to shut them down... and protect our doctors.

------------------
If you get the choice to sit it out or dance...

You made the mistake of seeing an uninformed Doctor. Your subject line implies that ID MDs are ducks. I really hate this kind of generalization.

My LLMD is an IDMD. His speciality is Infectious Diseases. He treats me as agressively and as carefully as many of you are treated. as a matter of fact, I will venture to say that his prcatice sounds a heck of a lot more professional than some of what I read on here. His and his staff's attention to detail is unmatched by the other LLMDS I contacted or saw.

I don't call them ducks because I respect the choices you all have made. But, I will take this opportunity to say that I have been horrified by the lack of credentials of some LLMDs and the way they treat their patients, especially the lack of follow-up and careful monitoring of things like our livers. I am also not impressed with LLMDs who do not take insurance and ask for cash up front.

I have seen all kinds of MDs for Lyme. I finally settled on an ID MD because his practice was so intune with state of the art protocols for Lyme Disease. Also, he bills my insurance company. And, he has a very skilled nursing staff. The LLMDs I contacted right here in Lyme central were offputting, demanded cash upfront, did not take insurance and quite frankly, arrogant. I do not however call them Ducks because they have helped some of my closest friends.

You saw a Duck, no doubt. But PLEASE lets not call all IDMDs Ducks. This is so wrong for those of us who are being helped by IDMDs.

Sorry for the rant but this attitude simply pisses me off. And, it takes a lot to piss me off.

Go to another Dr. for pete's sake. I did, until I found the right one for me. We don't need all this MD bashing. What a waste of time.

Is he confusing them with Bowen?

>>>He then went on to examine me and said that there was no way that I had lyme because I had no swelling or pain in my joints. (Meanwhile most of my symptoms have been neuro!!!)

His own ID literature would contradict that if he was up to date.

>>>Finally, I told him that previously when I had taken abx. that I often times felt worse or exaggerated symptoms and he said that if it were lyme the abx. would make me feel better!!!

>>>And lastly...I asked him of the possibility that it could be herxing and he told me that there's no such thing as a herx in the middle of abx that it is the first day of the introduction of a nex abx.

He's confusing a syphilis herx with a lyme herx. And really, some of their literature on syphilis herxes is a little suspect. The old syphilis herx literature seems to have only documented herxes that could kill you- not milder symptoms. They didn't make analysation of herxes an art form by any means... They just warned docs not to kill anyone.

>>>Unfortunately, the visit to his office really burst my bubble...after finally having a + test from Igenex I believed that I would be taken seriously, but that's not the case.

The ID docs are told by their societies that lyme is a clinical dx. A test doesn't mean much. The guy is lazy and doesn't know what he is doing here. AND he is totally passing the buck by saying see a nuerologist instead of him to see if you have nuero-lyme. Lyme is a GERM for crying out loud. That's what his job entails, taking care of germs. He's too lazy or fearful to do his job.

In fairness, there are more things than lyme that can cause nuero symptoms, but did he even give a heartful try to find any other infections? Did he spend much time going over all your symptoms in detail?

Yep, it's disheartening.

Are you talking to me?

If so... please note..

I call evil, idiot doctors.. whatever their speciality... DUCKS.

There is a HUGE percentage of ID DUCKS out there who have hurt MANY MANY folks.. more so than in any other line of doctoring.

In todays world.. with all the available reading material there is proving most of them wrong.. they continue to smash Lyme patients relentlessly. That is a DUCK.

So you know.. I am not calling ALL ID doctors DUCKS.

Or all doctors- ducks.

I happen to know of a couple of good ID doctors... and do recommend them.

I do also warn folks that, out of all the ID doctors in the country...

The chance of finding a good ID doctor at random is VERY rare.

VERY VERY rare.

I praise all doctors who help Lyme patients... no matter what their "sticker" says.

And if a LLMD is an evil or bad so and so.. and there is concrete proof.. I will call them a duck too.

OK?

Hope I didn't ruffle your feathers. So sorry if I did.

Nah, you didn't ruffle my feathers. It was the title of the original post that ruffled my feathers. I always find your posts well written and amusing.

I think I was mostly ruffled because I had just read all the posts about Dr. J. I don't know the guy. I don't know the Duck KLS saw either. I just dislike gebneralizations that are negative and really aren't helpful. Sometimes it is best to keep things to oneself.

I have seen some idiotic MDs myself, two were ID MDs. They knew nada about Lyme. I have also seen Neurologists, LLMDS, Gastroenterologists, Ducks and more Ducks. I don't talk about them on this forum by initial or locality. I have learned to just move on until I find the ones who know what they are doing.

I think this board is meant to help us help ourselves. My current MDs are always so impressed with the knowledge I bring to them. Much of that I have learned here. I am fortunate enough to have found a good team of MDs who don't have egos up their butts and will listen to what I bring to the table. I thank all the good folks on here for that.

Now, the real problem I have is that you have mentioned Mel in a few of your posts. I just want to make one thing clear - he's mine! I'll settle for Johnny Depp though, if you can't give Mel up.

;-)

The ID doc I am or was seeing did do more for me than any other doc, he did put me on rocephin for 28 days. It was half ***ed, and uninspired cookbook medicine, but I certainly can't say that the other 4 docs who saw me for specifically for lyme were any better- they were worse. And that treatment didn't cure all I have but it did help a *lot*.

The others rx'd me 200mg doxy with the complete and accepted understanding that I'd supplement that with another 200mg on my own so I wouldn't relapse into menengitis again or progress into encephalitis. And refused to do anything else. That's just bizarre.

I can't argue with you. We do expect more from the specialists.

The bottom line is that no MD has the cure for Lyme yet. My own MD (ID) said on my first visit with him, "I will do everything I can to help you. I just want you to realize that I do not have all the answers. This Lyme game is still a crap shoot and even the Infectious Disease community doesn't know the best way to treat it. If you are willing we will try the best protocols that I have knowledge of. You can expect to feel worse before you feel better". I instantly liked the man because he was straight up with me, unlike the ones who said 30 days of Doxy is enough or you don't have Lyme because I don't see a rash, yada yada.

I referred someone else to him and he chewed me out. He said "your Dr. is an arrogant SOB who doesn't know how to cure me. I can't believe you would go to someone who doesn't know what he is doing".

Geez! Do any of these MDs have the "cure"? I just think that sometimes it isn't fair to publicly beat up MDs who really, honestly, do not have the answers. Lyme is still a puzzle or none of us would be hanging around here for so long.

I want to be well. I want to take a magic pill and wake up feeling good. Heck, I want to have a glass of wine! The MDs who can't put their Egos aside and fess up about Lyme's elusiveness (sp?) should just open the door and step aside. We are on our own and are lucky when we can find one who is willing to help us. Instead of wasting time complaining about the bad ones we should spend that energy looking for the ones who can listen and help. Afterall, it is our bodies and it is our money. These MDs work for us.

So sorry KLS that you had to experience this

I had a very similar experience.

My ID doc had a major 'god' complex.

Told me all my problems were because of

allergies
sleep apnea
rosacea
anxiety

He told me I was wasting HIS time. That I was wasting precious patients' time who REALLY needed him.

He told me that if I had had Lyme for a year or more, I'd already be dead.

That there was no such thing as Chronic Lyme.

That the only true test for Lyme was a spinal tap.

That, if I had Lyme, I would have a Bull's Eye rash.

He was so rude, mean, arrogant and nasty that we ended up in a screaming fight. He dared to belittle me in front of his staff and within hearing of his patients. There was no way I was taking that from him...

I was able to keep from crying until I got outside of the building.

yeah, I would like the guy the guy too. No doubt, I'd love him. Utmost respect.

I think you lucked out though beachcomber. It's true no one has the answers yet, but for someone to be honest about it and try... that's so right.

You have to realize though that for some of us it has been a never ending nightmarish monty python skit. It would be really funny if it wasn't real. A lot of us have been treated with derison and hostility. Not all of us are able to afford an LLMD or run across a doctor who has enough courage to do very much.

For us it's a question which is worse for our health sometimes, the pain or the stress of either trying to get treatment or trying to treat yourself when you have no training in that. It's like slamming your head against the wall. It hurts bad. That's why we complain and scream about it, it really does make us feel better. I know the only thing that's kept me relatively sane through out this is sarcasm and complaining off and on.

Also, a friend with LD went to him and he totally ignored somethings and DIDN'T CALL HER BACK AND DIDN'T CHECK ALL THE TESTS THAT SHE BROUGHT TO HIM!!!

ALSO, I think he's one of the doctors that tetifies against LLMDs to the OPMC...

Boy, things have gotten really out of hand the past couple of days. Are we all stressed out from shopping or from not having any $$ to shop because it all goes to meds? I am thinking of giving my leftover script of Amoxy to someone as a Xmas gift - heck, I spent good money on that!

Everyone, have a great holiday season.

All I had was the Bowen test, which he pushed aside. Examined me and told me I did not have lyme cuz there was so joint stuff (I have neuro also). Also told me to go see a neurologist. I told him I had, so he said no I mean a "good" neurologist.

He told me lyme does not affect the eyes and that it did not matter what lab you used, they were all the same.

I was furious and also totally frustated. That is when I decided to go to J. Clinic. I also later called the lyme foundation to tell them the story and they should review recommending him as a lyme doc.

What doctors do not know about lyme could fill all the oceans in the world!
Lymelady

This disease is the only one that seems to carry so much controversy among so many doctors and it just amazes me to see that SOME of the ID doctors that we assume are going to be most educated on this disease don't seem to know squat.

It's frustrating and upsetting to see one doctor who says that they really believe you have lyme and then try to get a second opinion from a so called expert who totally discredits everything the first doctor tells you. I have been praying just to have a positive test and I finally receive one from Igenex and am told it's useless??? It saddens me that people who are so ill and so much in need of help have to go to such lengths to finally find a doctor who will take them seriously.

Maybe you don't have Lyme. I'm just kidding!!! I know what you are going through. I have been there. It took about 13 years to get a Dr. to say, "I think you have Lyme Disease". And guess what? I live in Faifield County where Lyme was "Invented". I actually had one Dr. dismiss my giant bullseye rash as a black fly bite because "There aren't deer ticks south of Old Lyme". That was in Greenwich, CT!

Lyme is still quite a mystery in terms of treatment. Also, I know a lot of people who are so paranoid that if they stub their toe they go to an MD and ask for Doxycycline because it might be Lyme. We can't blame the medical community for our misfortunes entirely. They simply don't know what to do. And, that is a fact. They also feel helpless and overwhelmed (the good ones).

I know of a world famous LLMD who is treating his patients with Botox injections. Figure that one out. Each Dr. has his/her own way of dealing with this and, quite honestly, the guidelines are not definitive. The word "recommended" is used over and over again. There simply is not a cure for Lyme yet. I don't think it is entirely the MD's faults. I think some of them are ducks and idiots, and that goes for whatever their speciality is. They are as lost as we are.

Do you ever wonder why so many of us have been on this board for so long? I would say most here are seeing LLMDs. I don't see too many success stories from them.

Like breast cancer, it is up to us to lobby and push for better research. Until then, we have to work with what we have. I don't have the time to wait around for the cure to come along. So, yes I have spent years, days, hours trying to find an MD who could help me. I have gone from Dr. to Dr. It isn't much fun but my determination to get better is driving me.

I also feel I can help people here by telling them what I have learned about my various protocols, good and bad.

Forgive me for getting bent out of shape. I just don't see that negative posts about bad MDs is helpful. Move on. We really have to be forward thinking or we will end up depressed and sicker than ever. If I angsted over all the ducks I have seen I would have to be committed to a rehab facility to exorcise the demons.

I really hope you find a caring MD who can help you. I have one and I am still sick, but he hasn't given up on me yet. Hang in there and keep a positive outlook. I don't recommend my MD any longer because his brutal honesty pissed off some people. This is a long journey. Let's keep it positive and support one another.

I do respect your viewpoint and you are entitled to vent.

I think I need another piece of forbidden chocolate.

When I had first saw my MD, I explained all of the symtomsI was having, he said "sounds like LD", but in his next breath he said "but that is impossible there is no LD in Michigan"

I don't think he was being mean or evil... I think maybe just very ignorant about LD. (Don't get me wrong, there are many evil doc's out there)

The neurologist he sent me to was very mean and evil! She said that my MRI was perfectly normal, infact better then her own(maybe she has lyme...) She then told me there is no way that I could have LD. Shoved some pills at me and told me to see a shrink!

When my LLMD saw the results of my MRI he was livid. It indeed was not normal. Which LLMD came to the same conclusion I did (The neurologist probably has lyme)

If I ever would see a docter who didn't believe that I have lyme or disregarded my tests results I would walk out of the office immediately, and probably tell the duck to get informed.

I really am grateful for my LLMD, I know that I will be taken care of.

I stopped my abx about 2 mos. ago because I was feeling so horrible taking them and felt that I needed a break. In all honesty, I've actually felt a little bit better without the meds but now all the old symptoms are coming back again and I feel so lost...

I hate having to run around looking for a good doctor that will take me seriosly and finally when I had accepted the fact that I had lyme after receiving my + Igenex results I have a doctor tell me that it certainly can't be lyme.

I don't mean to bring everyone down, but I guess I come here hoping for someone to lift my spirits because I know that many of you can relate.

Don't feel bad about expressing your feeling. I think thats what this board is for.

Your symtoms are coming back because your off your meds... Did you have feelings of depression or hopelessness prior to meds? These feelings will probably get better when your back on them.

My sister has had lyme for a long time, when I speak to her on the phone I know immediately if she is off her meds. (she takes breaks once in a while too) We all know these emotional symtoms.

BTW-- Do you have a LLMD? I didn't see you mention it.

I have had some wonderful experinces with ID doctors also--so I can defend beachcomber on that thought

But I can also back-up everything Caat mentions in her postings

I do wish we could find a safe way to discuss the LLMDS who treat lyme--- not so much them directly--but how to handle office staff, other specialists that they send their patients out to see, ect., ect.

What to expect, others experinces---yes, we can e-mail each other, but group conscence sometimes is a wonderful thing!!

Some LLMDS have staffs that walk on water, others have staffs that you need kid gloves to deal with---hey, they are all just plain ole people--with flaws and bad days, and personal problems of their own--best to learn to deal with them on their own terms, I have found out.

I had gone to one very well respected LLMD--to have him tell me that he did not see patients who were using IV ABX( I had just had my line pulled prior to moving half way cross county)So I didn't see where the past IV abx had anything to do with this statement, and he dismissed me because of this

WHAT??

Well, thru talking to other patients in the state--I found out what was going on, and called him up to tell him that I understood his plight

He called to applogize--and offered me a placement in his practice as a patient

So that was a good example of how discussing things of this sort can be very benificial

I would have just wrote him off as a complete idiot if I had not been given the correct information as to the why abouts of his additude.

& a lot of us do get rid of it or go into remission after 2 or 3 years. I've talked to many people who have both on and off this board.

Just want to add that because otherwise anyone reading this thread would be incredibly depressed. & it's true.

I just hope they figure this out sooner than later. I hope they take a good look at life cycles of the bugs and co-infections.

Not sure how you meant this.. but I am going to give it a shot..

"Do you ever wonder why so many of us have been on this board for so long? I would say most here are seeing LLMDs. I don't see too many success stories from them."

Just so folks know...

"Success stories" are different things to different people.

I am much improved... however.. I am not cured. Is that a success story?

VERY MUCH SO!

Then why am I still here?

Some of us are still here because we were misdiagnosed for YEARS before anyone had a clue what we had... or would take us seriously. Many of us that ARE still here might be dead had we not gotten help from LLMD's when we did.

Some of us that are still here are trying to "maintain" our current levels and not decline any further. We know it is too late to "cure" us or to continue to try to.. without killing us with all these drugs. Many of us are improved from our treatment.. or are in remission... but are not "cured".

Some of us are still here because basically there is no 100 percent for sure cure for Lyme disease for5 anyone... no matter how long you've had it.

Some of us are still here because we have more than just Lyme disease alone. Some have one, two, three.. or even more co-infections that were overlooked and are now in the chronic form.. along with Lyme. For example- I have had multiple positive tests now for 10 different tickborne diseases... and I was sick for more than 15 years before they were identified... so I am still here. I am learning and sharing.. and helping to find answers.

Some of us are still here because we have children or grandchildren with Lyme... some who were born with it. We want to help the children and no matter how hard life gets.. or how busy... we won't turn our backs on the others just because we are better.

Some of us are still here because we have had friends and family members who have died from tick born diseases and we don't want that to happen to anyone else if we can help it.

Some of us are still "here" because we finally found LLMD's who weren't afraid to do everything they could to help us.. no matter how far gone we were when we went there.

I just wanted to make that point clear.

I am not disagreeing with why we are still here. My only point was that it is not only those who are seeing Infectious Disease Drs. It is anyone who has seen any type of MD, including LLMDS, which is what most people here call their MDs.

In all of my posts I have tried to reiterate that, despite the type of MD we choose to see, we are here for positive support and feedback. And, it doesn't help me or anyone who has limited access to LLMDs the be generalizing about IDMDs or to be bashing certain MDs, like Dr. H & Dr. J - whom I don't know.

I too have improved greatly. I am at about 50% better than I was a year or so ago. I want to pass along what I have learned that has helped me - give back on this board. And, I have said thanks many times to those who have helped me on Lymenet. Without this board I honestly think I would still be believing the duck who told me I was "just going through menopause and passing out while in a store or not being able to walk some days were normal".

Fortunately, I am way smarter than to listen to that kind of BS. But, I won't post this MDs initials or the type of MD he was. As far as I am concerned, he is out of my life. I moved on and I'm not looking back or complaining. We all have our limitations, even the MDs.

I think if you read all my posts on this thread, you will see that I agree with what you are saying - we don't have the cure, not even our MDs. That is why we need to keep being supportive of each other and we need to cut some of the MDs some slack, yeah even the ducks. Just let it go and focus on what is helpful.

I feel so badly for those who have no access to LLMDS or a good IDMD or even a knowledgable PCP. We need to encourage those folks to search for the best they can get and to help them by telling them what we have learned.

BTW, as I have written before, I find your posts interesting, amusing and extremely helpful. Though, I still can't get the image of you putting your toe back on (a wayback post).

Take care and keep posting.