Met with hositility, agression and non acceptance of a lyme diagnosis

I just posted this on the MS board, thought it would benefit here as well...

Just to recap, I was diagnosed last March with a CDC positive western blot. I've been aggressively treating currently for babs and lyme. every since with my LLMD. Most of my symptoms that remain are neurological, and for the most part "Mild" and I've been living with them, leading a normal life, even running again. Last summer I was running 5 miles a day.

In November, I had a scary "flare" couldn't walk due to extreme leg weakness, (like collapsing legs) and intense lightheadedness. I went to ER, thought i was having a stroke, was cleared, had a brain/lumbar and thoracic MRI, with only the lumbar MRI revealing I had an annular tear and bulding. The brain and thoracic were normal. My PCP told me there was really nothing more she could do.....and about two weeks later, I was feeling great. Jan and Feb were my best months for far, since my treatment. My LLMD told me to just to keep fighting, and keep up with my protocol of biaxin, mepron, artesiminin and flagyl. If improvements weren't made, he was considering IV protocol.

A few weeks ago, that "flare" happened again. It's now over three weeks, and my symptoms haven't let up. It's horrifying to feel that at any minute, you will collapse and lose the ability to walk. TERRIFYING. So, after seeing my LLMD he said maybe I should see a neuro, and revisit an MS diagnosis. So I found one and saw her yesterday. And this is what happened:

It was the WORST experience I EVER had with a doctor. And I've dealt with a lot in my 45 years.

To sum it up, she basically chastised me for believing I have chronic lyme, despite providing her with my cdc positive results. We actually argued about it. Her bedside manner aside, I felt like I was on trial for coming to a neurologist with a chronic Lyme diagnosis. In retrospect, I should have left, but I was MAD and just couldn't let it go.

She said "if you have Lyme, then why are you here?" I said that ALL of my symptoms are neurological in nature, and when I got to the point of using a cane, and potentially a wheelchair, I felt it was necessary for another opinion. If you are unwilling to accept that, I'll gladly leave." She apologized, and tried to resume with the examination.

She said IF it was MS, after my last "flare" in December and the MRI I had during that flare, it would have showed a lesion. So she felt it wasn't MS because of that, AND, IF she would request another MRI she would have nothing to compare it to, because the first MRI was clear. She also said that there is no way my insurance company would approve another MRI with a lyme diagnosis.

She proceeded with the neurological exam and I "passed."

She then went on to diagnosis me with migraines and depression, because this is clearly connected to my inability to walk. (sarcasm). When I said that I had some lumbar issues that could be? the reason for the leg weakness, she said" that doesn't make sense, then why would you have the dizziness??" I retorted with the same rational, that "F I do have depression and migraines, why cant I walk??"

So, she wrote me a script for anti depressants, told me to up my metoprolol (for high blood pressure), keep a log of migraines (which I never once had OR said I had) and come back in a month and then "Maybe" she would do a lumbar puncture for lyme (PCR) test.

Despite how disturbing this was, it was good. I knew I could be in store for some opposition to a Lyme diagnosis, but I certainly didn't expect hostility. It actually strengthened my resolve to keep advocating for my health. It may very well be Lyme, and I'll just have to accept that - it's just that the inability to walk that I just cant let go of, until I'm certain this is lyme and nothing else neurological. She didn't suggest any nerve conduction test, even though I said my whole body buzzes constantly.

THe lesson I learned is that any further opinions or doctors/specialists I seek, I will vet out by asking if they have any experience with lyme, if not...I'm going to keep it moving. My LLMD, is very good, and I guess I need to put more trust in him as well, (which is not easy).

I know a lot of us are met with opposition on our diagnosis, but no one should have to endure this when they are sick

Well of course Rowing Mom, I understand that, I have a job, but fighting this disease is also a "job." It's clear from your daughter's experience that you've advocated for her, and it's wonderful that she is improving, but I'm sure you had some bumps along the way.

I clearly didn't agree, and I will keep going.

Perspective is what this board is all about, I've learned a lot from other's experiences and hope that perhaps this would help someone else.

I'm working on my diet

Hi Mischa,

I think that a lot of drs don't know a thing about LD, and that it makes them feel inadequate. And a frustrated dr is mostly a dr with bad bedside manners... They tumble off their ivory tower...
And most of them are not even thinking about doing research. They have been drilled to look at their own specialism, blinds on.

I've had an almost total medical checkup during the past weeks because of a previous condition, and I'm still baffled with how rude I was treated by by my drs. I just sat it out, and crossed them out on my list of drs.
These are my conditions from now on, which I pay them for: they need to listen to my symptoms, communicate with me and ask me if I'm ok with their treatment proposition. I think this is pretty basic stuff, but was absent in all of the contacts I had, but one. Sad, very sad...
Stick with drs you feel comfortable with, it's your body, you're the only person who knows how you feel. It's up to them to listen and put the pieces together.

about the flare: those can be pretty scary. It might also be your body saturated with toxins giving you these extra symptoms. Are you detoxing? Your protocol seems a heavy one...

M

Sheesh! I'm so very sorry Mischa!! I pretty much don't tell any doctor that I have/had have Lyme as they always take an attitude with me - especially when I know more than they do about it!!

LOL!!! Yep, that's what I mean!!! I find I can't even go see a ENT (Ear Nose and Throat doctor here in the US) any more since I know the difference between a thyroid issue and esophageal pockets!! I had one want to do surgery on me for that when I went in to ask about my thyroid!!!

Seems more and more docs are like this any more. Very little attention is actually paid to the patient and their actual problems. It's what the doc "thinks" their problem might be, based on who knows what, because it's not based on symptoms or what they patient has to say!

I agree with Garden Peace-- tell your doctor not to send people to that neuro. Maybe your LLMD has friends who are neuros who are more knowledgable? It is very hard to find a LL neuro.

Ive dealt with some who have dismissed but not the outright hostile thing. I think the antidepressant thing is common. To be honest with you sticking their head in the sand like an ostrich doesnt make you a very good dr. But most of them dont care about that. Dont question just go with what erroneous guidelines are being sold to you. Good luck my friend. I too went from a very active life to neuro Lyme. My LLMD saved my life.

I wonder if just telling them that you are being treated for an "unknown" bacterial infection would work?

I've learned not to say a word about even using herbs - for anything! Most regular docs are against the use of herbs period - of anything, simply because they are the ones that are uneducated about them. I've been very fortunate to find a Nurse Practitioner that isn't afraid of herbs. She only wants to know what I take (& is curious why, but never argues) so that she can help me watch for possible interactions.

However, if I do go to see a doctor that prescribes me a medication, I come home and do my research to be sure that my herbs won't interfere or interact with it before I ever get the script filled.

I think we've all had horrible-doctor experiences. I don't know why doctors constantly think their patients are hypochondriacs. In my opinion, doctors are way too dismissive.

I would have just walked out on him. Maybe flipped him the bird first, ha ha! Mostly kidding about the last one.

M