Not sure about my LLMD

I went through a huge ordeal of testing starting last October with seeing my Primary Care for Carpal Tunnel. She referred me to a neurologist who said it was most likely MS, but did an EMG and a brain MRI, decided to treat per the EMG showing some carpal tunnel. He referred me to an orthopedic guy who said I absolutely did NOT have carpal tunnel, but gave me a $400 cortisone shot just to test it out. Went back to the neurologist who said I have a Connective Tissue Disorder. That prompted me to go back to my LLMD from 5 years ago and he referred me up to a clinic an hour away for treatment because he was scared to treat me after my IGenenix showed a double positive in one band and a borderline in another band - The CDC wants 2 positives in different bands.

So now I go to this doctor an hour away who does not accept insurance. (Is that a red flag to start with?). I had an initial appointment that was about 4 hours long, had a lot of tests done (not covered by any insurance) and was handed a huge box of supplements to go home with as well as an Rx for abx and Diflucan. My total bill at this appointment was over $1200. They require payment the day of your appointment, but will not give you a detailed receipt - just a cash register receipt saying you paid them $1200 - no breakdown of what it was for - so that also seems strange to me. The refills on my supplements are over $500/month.

2 weeks into treatment, I emailed the nurse because I am having SIGNIFICANT trouble walking. Prior to going up there, I had been running most nights and suddenly I was having a palsy feeling and very off balance - to the point that I applied for a handicap placard because I was not able to walk into work from the parking lot. My stomach was also VERY distended - like I looked about 7 months pregnant, but all at the top of my abdomen - not the bottom. At first I didn't get a response at all so I tried again and she just asked if I was constipated. I said no. No answer. So I waited a couple days and asked if that meant it was ok and again, expressed how bad the side effects or symptoms were. Co-workers asked if I was drunk at work because I was stumbling and off balance so badly.

I just had my 2 month recheck and met with an ND first who did some testing and said I was very clearly having an awful reaction to the Diflucan. He also said that my Lyme treatment was not working because I have 2 very bad viral infections that will need to be dealt with first. Then I met with the MD and she took me off the Diflucan and abx, put me on Plaquenil and Valtrex for the viruses and agreed that I was reacting badly to the Diflucan. This kind of infuriated me, because I'd been telling her that for 8 weeks. My follow up was $565 and again - no detailed receipt, but due the day I saw her.

She wants me on a dairy, gluten, and soy free diet. I'm also vegetarian so I said I'd try to work with a dietician in my area to sort that out. She said they have a health coach on site (but again - an hour away from me - each way and not covered by my insurance) I said I'd like to find someone closer and that would be covered. She said that was fine, but when I called a week later to get a referral, she would only refer me to her health coach who charges $1500! She flat out refused to refer me anywhere else and just said if she was going to write a referral it would be to her affiliate because that's who she recommends.

She also sells Rodan and Fields skin care and there are flyers in every single room that you go into at the clinic. I find this really odd too.

So after the referral situation and being broke as a joke trying to afford this stuff, plus not getting responded to in between appointments, I'm trying to look at what my options are. I'm considering going back to my PCP that I saw in the fall to see what she thinks - maybe get to an infectious disease person who is in my network? I have a great job and good insurance, but I honestly will go bankrupt if I continue down this path and I honestly feel like my doctor is not looking out for me at all.

Is this normal? If I were to go back to a "regular" doctor with my diagnosis, wouldn't they be able to treat me?

It is fairly normal for LLMD's to not accept insurance.

What I would not put up with is no breakdown of what was charged for what.

Also, I won't go to a doctor that insists I use their products only. I don't have an endless supply of money (it's actually quite a tight budget!!), so I need to shop around to find what I need. If they can't understand that, then they can't understand (or help) me.

I would encourage you to look around for better options, but don't go to an ID doc - they rarely understand these infections, believing it's hard to catch and easy to treat. The only exceptions I've seen to this have been those ID docs that have stepped out and now follow ILADS treatment protocols.

It's not likely that your regular doc will be of much help either - but it may be worth a talk with them to see what they would do for you. Some docs are willing to still follow ILADS treatment protocols, but many are not.

Thank you guys so much for the quick and good responses. I flip flop between being super pissed and thinking I'm crazy and should just do whatever it takes to get me well.

I've had good luck with oil rizoles in the past - similar results as abx, but half the side effects. I would have considered myself in remission for about 5 years - mostly good with strange bouts of neurological trouble and this carpal tunnel thing now and again for a few months at a go.

Love the article too PeteZa.

The doctor that I worked with for the oil rizoles passed away so I can't go back to her, unfortunately. No other doctors are recommending them either.