So, I went to see him and he dismissed Lyme immediately based on my serum tests only. He ran 20-30 more blood tests to check for other things (including HIV and HEP C which I have absolutely no risk factors for) and when all my tests came back negative with just abnormalities in the CBC as per usual, he has now said that he thinks it is something "more rare" and he wants to consult with both my rheum and my neuro to figure it out. In the meantime, when I asked him again about Lyme he bashed LLMD's as overdiagnosing and missing important diagnosis and bashed Igenex claiming that "studies prove" the inaccuracy of their testing.

I called my neuro today to discuss this and the fact that my latest MRI has an additional white matter focal point and the one I had 4 months ago has increased in size from 4mm to 8mm. I told her that I had made an appt with an LLMD for a consult.
She told me she would rather me go to see a university neuro in NYC because she also is concerned that an LLMD will miss the "proper" diagnosis.

In the past 6 months I have had at least 100 blood tests, 6 MRI's, an EEG, a VEP, a SPECT, Chest, Knee, Neck and spine Xrays, a spinal tap, 20 hours of neuropsych eval, etc etc.

I have tried to remain positive throughout and have shared the opinion that it is important not to miss something else..but how much more can they possibly do? And why does one doc dismissing lyme bring me back to square one where I was 6 months ago, when we were pretty sure where we were? Even the neuro-psych said my cognitive problems were consistent with Lyme.

So here is my question. If i keep the appt with the LLMD and pay the $575 fee for the hour because he doesn't accept insurance, and IF he determines that it is Lyme, how the heck do I get treated when my docs have already dismissed any decision this doc may make before I go to see him? Never mind, how do you get insurance to pay for it if the LLMD has no insurance and/or hospital affilitation?

I have been waiting patiently for my "regular" docs to figure it out and now I am facing down another 2-3 months of tests yet again. At the very least you would think they would give me flagyll for a few weeks and retest me..or give me oral antibiotics to see how I react to them.

Once my son was diagnosed by an LLMD, I promptly swore to eliminate all the ducks from our lives. If he has a problem, there's the ER or a "walk-in". Our LLMD has put him back in school full days and tearing around like a normal 15 year old, the rest of the Einstein's couldn't even figure out what he had.

Quit buying tickets for the merry-go-round, and you don't have to go for the ride.

First...how's that shoulder pain?

And did that MRI show anything ELSE as you had thought it might?

Now on to your dilemna:
Do you KNOW the LLMD? Not all LLMDs are created equal. Have you seen him/her before? Make sure you ask around and get very personalized info about them before you make the plunge.

I ask myself the same questions all the time, it IS crazy making for sure.

I think the biggest question for me is why do you have to pick between two extremes?? Those that dismiss lyme and those that think EVERYTHING is caused from lyme. I am still hoping for that miriacle doc that does not lump lump lump.

I think you gotta give the LLMD or some other LLMD a chance though. The bucks are gonna be spent. It happens. sucks, but it happens. Otherwise you'll be wondering too much and you might not get better.

I dont beleive all roads lead to lyme, but it sounds like your symptoms do.

BTW I test highly positive for 41kda at every lab in the USA. That is the flagellin marker...the thing that is rigid in the spiraling spirochete and makes them move. How gross.

They say that is not specific but the only other flagellin bacteria are also pretty freakin obscure. I dunno. Maybe look that up and see what you can find out about flagellin.

Med school seems like it would be cheaper and more on target, dont you think?

I am sorry you are having to make these decisions. My vote is go to the LLMD to check him/her out. If he thinks Lyme he MAY be able to convince the others. That is what mine did. Wrote up a letter. I still think my PCP doesnt believe it, but she is willing to try for now.

Please keep us up to date on this, I am interested and concerned for you!
Trails

Thanks,

Your neuro duck sounds exactly like the neuro duck I went to. That guy didn't believe in chronic Lyme and because all my tets were negative he opined I had "something exotic." I told him I didn't think I had anything more exotic than Lyme Disease.

My advice, for what it's worth, stop going to these lousy doctors. I'm sure you can find an LLMD who will not charge you an arm and a leg. Unfortunately most of them don't take insurance. Personally I think it's because they want to stay under the radar of those who would persecute doctors who treat Lyme in a "non-Steere-like" fashion.

Your story is very, very typical of many Lyme disease victims.

M D L Lab takes all insurance and they are Lyme specialist. I tested positive for Lyme and Babs from them. http://www.mdlab.com/index2.html

My insurance is Empire Direct HMO who only does Quest testing! but somehow they payed for MDL...

I'm glad I went to the LLMD that I thought I could not afford. My health is worth the world.

Now I'm just going to submitt to the insurance and hope for 80%. I think it will happen. Regualr visits are 85.00. If they pay 80% it will actually be less then a regular Duck copay.

You'll figure it out. If you go to a real LLMD you'll save yourself and maybe a butt load of money in the long run.

We went through a similar merry-go-round (love it NP) with our duck rides on behalf of my daughter. We are now on the LLMD train ride to somewhere better! A little elbow grease and you will have that mess cleaned right up.

Unfortunately these Donald Ducks aren't gonna give you more than an autograph on your paid invoice receipts! Heck, you can get that at Disney World!

Maybe you should check into another LLMD? You have probably already considered that.

Is there an LLMD who takes your insurance up there? It is so sad that these poor LLMDs have endured so much ridicule that they are losing their rights to practice proper with insurance cos. for the sake of their patients.

All earlier joking aside, I sincerely hope that you are doing better soon. Facing big decisions about your health is not easy and quite scary at times. Hang in there, chin up! Keep us all posted here, okay?

No venus or arterial malformations in the MRIs..just the white matter lesions. Normal EEG & VEP also. But my CSF had elevated protein of 74, normal cut off for this lab is 60, increased Albumin, decreased IGG Index and rate and decreased IGM (loc) whatever that is. But the CSF PCR test was negative for Lyme.

Neuropsych cognitive impairments in Learning/memory, speech/language functions (considered clinically impaired),visual spatial skills, motor skill decreased in right hand, and attention/concentration below average. I graduated undergrad 2nd in a class of 2500. For me, this is a HUGE change in my abilities.

My current diagnosis is "encephalopathy of unknown origin."

My shoulder is the same, the knee is much much worse. 2 collagen injections in 2 months just to be able to walk.

There are 3 LLMD's here, but the first one I called (Dr. P in CT) because I recognized the name. I didn't call the other two because he got me in in 2 weeks time. I could check with the other two though, but only one of the other names is familiar to me and he is a neurologist. It will probably take 3 months just to get in!

As far as my Lyme tests are concerned, the first with no bands at all was with Quest. The second which showed band 41 was by Imugen. None of my docs will order the Igenex test because they don't believe them to be accurate.

I think I will keep the LLMD appt. The only thing it can hurt is my wallet! And it may just help. And if he says it isn't Lyme, well then I will get it out of my head and know I have to continue with all this other stuff. I will also continue to let my other docs "think" about what may or may not be wrong with me and see if they come up with anything. But I believe I am going to draw the line at another new neurologist, particularly one 2 1/2 hours away. I don't want another new doc who will start all over again repeating all the same tests. All the run around itself is just way too exhausting!

This site has been very helpful to me throughout all of this. I just wish the search functioned faster!!! I am too impatient and end up xing out all the time and just reading and reading posts.

I as well have seen 10 specialists and 4 GP's. Everyone ignored the lyme thing as they all do. Only the last guy I seen told me I was a classic case, hears my story all the time and said "they tell you, you are crazy or have MS". I had known for some time, like yourself that I had lyme but was unsure if ALL my symptoms were from lyme.

Extensive testing, over many months usually at a lab or testing place daily, nothing showed except some stomach stuff, and hypoglymica typcial of lyme disease.

From what I have read, many lymies here if not all have to foot the bill for payment, as no one helps them, health care and treatment is free here in Canada and nobody helped me either.

My advice got to LLMD and forget about the rest of it. LYme is typcial as well for showing up as RARE diseases. I thought I had Wilson's at one point.

My doc told me last week that 41 was the magic number.

I only have three bands--he said all I needed was 41 in his eyes. He took blood--he is trying to get my family CDC positive so we can take more abx.

Talk to the people here and find a good llmd in your area and see what he/she thinks.

Just my opinion,
L

It is possible that he never saw that particular result because the records he got from my neuro were "spotty." I'm now keeping my own file of every test.

But even if he did see it, I can't understand why he is looking at "rare rheumatological diseases" when he is an infectious disease doc and there is evidence of bacterial or spirochetal activity. So, I asked for an explanation.

Of course I was polite and played a little "dumb" in order to force an answer.

GOOD for YOU!

I didnt know the 41kda was tested thru not reputable lab! That means MUCH more.

I usually only test positive 41kda in blood thru those types of labs but thru MDL and Igenex I get TONS of other bands.

Did they test spinal fluid by western blot for lyme? Not usual or necessary, but that was the BANG I needed to get the ducks to listen to me. I tested massive high IgM bands in spinal fluid (1991)and not a one of them in IgG and they all got scared and put me on IV right away. (well, right away for them is 2 docs later and a month fighting insurance)

So...41kda....hmmmmmm, I will look around here for some articles and try to get you links this afternoon that are good to explain this stuff to you. Unless you dont want any, do you?

Did your team (softball) Win??
trails

I think I love you! You are my kind of person.

You have been stepped on.. treated worse than a Christmas cactus in July.. and you still hang in there! Good for you!

Above all.. use YOUR own good common sense. I can see you have LOTS of it... and YOU need to think about YOU right now so we can get you on the road to recovery and off the duck carrosel!

Like NP so nicely said.. "Stop buying tickets for the duck merry go round". Well said NP.

Ya know.. most folks.. had they gone to a LLMD first.. and I KNOW you and others didn't know to do this.. like me too.. but if we had.. the $ the LLMD's charge wouldn't seem like much. We spent so much... in time wasted, stupid tests, co-pays, meds that didn't work, etc. etc.. that by the time you add that up.. a LLMD's visit would seem light fare.

The problem is... we have been drained physically, mentally, and emotionally by the ducks first... and tested beyond what humans should have to go through.. for months BEFORE we come to the conclusion they have NO clue what they are doing.

You already know 50,000,000,000 times more than the ducks you have seen. That is easy to see by this post. Actually.. that last question you tossed out at them.. I am SURE they have no clue of the answer. Don't hold your breath waiting for a response there.. ok? Or a GOOD response anyhow. You are already WAY over their heads on this. They aren't fit to carry your socks.

You are the thorn on their rose of life.. and GOOD for YOU! Keep jabbing them. Maybe.. like you said.. you will make them squirm enough that others won't be put through this.

Now.. we need to get YOU fixed.

I am not familiar with your LLMD.. sorry. I do know that LLMD's are actually doctors too.. hehehe.. so if it isn't Lyme and coinfections.. they can still see you as a patient and try to help. I mention that because by this point many folks have forgotten it after being treated so poorly, as they do the duck hop all over town.

And follow your gut. YOU will be your best advocate here in this situation.

And I REALLY want to see what the ding dong ducks do when you write that steaming letter you WILL send them when you find out they were wrong and have proof positive. I see a tiger within... don't I?

Now.. there is a reason this is one of my favorite sayings (below).. which I haven't been able to quote in a while.. so here goes... for your pleasure...

"I'd rather shoot myself in the foot than go to a Neurologist for Lyme disease.

I'd rather shoot myself in BOTH feet than go to an IDiot duck!"

You are on the right road. Don't quit.. and keep on moving forward like you have been. You are doing an excellent job!

Dump all the ducks ASAP so YOUR life will be easier and less stressful.

And before going to a doctor for possible Lyme... and it is hard to figure out if they know anything or can and will help...

I have a simple little test everyone can do to help them determine if a doctor knows anything about Lyme.

Simply ask.. as soon as they walk in the room... no muss no fuss... look them straight in the eye and say...

"How would you treat the cystic form of Lyme disease?"

A duck will stumble and bumble.. and may even respond with a question for you instead of an answer... cause they won't have a clue.

If that happens.. PICK UP YOUR THINGS AND WALK OUT .. then and there.

No more conversation... period. Refuse to pay for the visit... and give the reason.. if needed... "The idiot doesn't have even the basic knowledge to treat a common illness and can't answer the simplest of questions concerning it."

Then contact your insurance company and let them know you didn't see the duck and be sure they don't get billed for the visit.

My wish is that you have answers and feel better soon.

Keep us posted on how you are doing.. in the duck wars and otherwise.

PS.. You said.. "But even if he did see it, I can't understand why he is looking at "rare rheumatological diseases" when he is an infectious disease doc and there is evidence of bacterial or spirochetal activity."

First of all.. Rheumys LOVE to discover some new ailment so they can name it after themselves. This is their badge of honor. It doesn't matter that they miss a TRUE diagnosis.. because having a new "syndrome" named for them.. hay.. that's a feather in their cap.. and they are desperate for the attention it would bring.

Reason #2.

It's called, ABLS- Anything But Lyme Syndrome. He wants you to have that so he can save face for missing Lyme from the get-go.

Many duck brains are infected with ABLS. They are also experts at deny deny deny.. and then suddenly finding a hangnail as the explanation for your ongoing shoulder pains and bladder disfunctions.

Don't let the ducks bite you. Refuse to allow them to waste your time and money playing this game.

OK?

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

"Am I crazy?"

Well, of course you are!

But we like you anyhow!

Cause your just like us!

It would put the onus back on the patient to figure out how to get themselves well.

They can go along their merry way with accepting $10 copayments and ignore the huge amounts of people in endemic areas that are "crazy".

They should be frightened and insulted that they can't figure it out. They might get blown off of the board of directors or whatever b.s. goes on in all businesses.

remember?? Take 2 aspirin and call me in the morning--reality is stranger than fiction.

I guess I was wrong about 41kda. I mean it IS the marker for flagella. But I guess it is NOT considered specific at all. I am not sure why coz I can only find LYme, Syph, and Yaws that have flagella.

Maybe your ducks will come up with more diseases that can test positive for flagella.

Still, like I said, I only test positive for 41kda by most labs, but both MDL and igenex get many more bands for me.

I was trying to think of a word to replace that one so it wouldn't seem so harsh on the board, but I just couldn't do it without changing the meaning. Although I don't think it applies solely to women.
Your post did make me lol for the first time in a long time.

Trails, thanks so much for looking stuff up for me! That was very nice. Like you, I looked up bacteria, protozoa, etc propelled by flagella and came up with things like meningitis, syph, etc..all things that have been ruled out. And a host of other things which cause gastro-intestinal distress, which do not relate to neurological symptoms.

Also, with something in my body that has a flagella, whatever it may be, it HAS to be something that is treated with antibiotics. Viruses don't have flagella and a straight neuro problem wouldn't show flagella either. Seems like simple logic to my cognitively impaired mind!

My LLMD appt is June 13, so I figure I have until then to convince these docs to treat it and see what happens. If not, I will go to that appt. My belief is he will start the antibiotics, and my reaction to them should show them the error of their ways. Unless of course, I am wrong.

But if I am not, it seems almost criminal to me to withhold abx from someone for 6 months while watching them physically deteriorate, and watching the progression of white matter lesions on the MRI. The only med I have had the entire time is prescription motrin for the pain. That barely addresses the symptoms, never mind the cause. It isn't like I am asking them to try injecting me with arsenic, I'm just asking them to TRY the oral antibiotics and see what happens.

Tincup is right, it won't be the last they hear from me. But for right now, I need to focus on getting better. Seriously, if I get any worse there will be wheelchairs and seizures involved. So I have put off the fight long enough. It is so sad really that it has to come to this when they KNOW that there is something wrong and have documented evidence of it, but just keep saying they haven't figured out what it is yet.

I've never heard of any other disease where previously healthy people have to suffer for months (or even years) before getting help. It is mindblowing really.

Here is my pet theory. (and yes, this may prove that I really AM crazy!) But back in January, I had a positive ANA test. I believe that had he run a lyme test right then, that it would have been positive because my body was making antibodies to SOMETHING.

By the time the first person ran a lyme test, my neuro, it was almost 3 months later and my ANA tests had returned to negative by February.