Picture I edited from yesterday’s trip to LLMD
I’ve always promised to be 100% honest on this blog so others with Lyme get the truth and not something watered-down or sugar-coated. Well here is the reality with Lyme and doctor visits with how I’m starting to feel….
I hate every doctor I’ve seen since I first went to a doctor complaining of chronic pain and a bad knee. A doctor at that time told me I was “a young kid who was making up things to get attention and time off work”. You better believe I gave that doc a piece of my mind, many f-bombs and I even later got my revenge and he was fired after I gave my honest answers on a survey about my visit with him. I found out he was like that with others. Since then my view of “doctors are caring, compassionate gods” changed to “doctors are assholes” (sorry for the language). Since then I’ve had maybe 2 decent doctors out of 30 or more doctors. That’s not a very good ratio. And that is from many different medical centers.
As for my LLMDs they are the only doctors I trust or like. But I’m starting to realize things with them too. My older LLMD seemed to favor female patients and even visited them in the ER or text them daily to check on them. Most were early stage lyme & not very sick. With me he never replied when I text him, he never called back or answered when I went to the ER. I would call to leave a voice message and nobody would refill my prescriptions so I would be out for weeks. He kept pushing aggressive antibiotic treatment on me although I had bad c-diff and severe flesh eating candida. I was told to stop antibiotics yet he wanted me on even more than the 3 I was already on? Makes no sense and he had no idea what I was going through. I lost the ability to walk and that didn’t change things. I was told I was “too complicated”. Plus visits averaged $1,200 a visits (with in house meds) and treatment was going to be $6,000 a month and back then I had zero income plus I’m not wealthy nor is my family. So I moved on.
My next Lyme doc was very thorough but pretty strict and not the joking type. He asks a question you better answer it exactly or he would ask again very loud. Even though I told him my short and long term memory were very bad he still wanted exact dates of everything from my past. I can’t even remember what I did yesterday! So if I would say “I think is was November ” he would reply “you think! I need exact dates no thinking”. Sheesh I don’t know I don’t remember and I don’t feel good so cut some slack. But he was a good doctor don’t get me wrong just very strict and to the point. Well I started to like him once we got passed the questions part he started putting things together and testing me for many things that all came back positive. He was a huge help and even took some of my Medicare so visits weren’t bad as far as price. After a few visits he was puzzling things together when he told me he could no longer see me “I was too complicated plus he is no longer taking Medicare anyway”. So I moved on.
Went to my first visit with Hynote. She was so nice and so awesome. My first visit she talked for 3 hours and only charged me for 30 minutes. She was so interested in my whole life story and all my illnesses and other things she was like a mad scientist ready to take me on. Almost like Dr House on TV when he finds a rare case. She started doing genetics testing and I was positive on all. She started telling me why I was allergic to the sun and vitamin D and why I have chronic dehydration….etc. My next visit she started more tests and putting more things together. I took a lot of tests and she was so excited to see the results and tell me all about them. She was really smart. But she didn’t look well that day and she had scabs all over. A few days later I found out she had passed away. So there went all that testing and results I was getting and my records were in probate for a while so we couldn’t get the results. So we moved on since she was the owner of that Lyme center they closed and a non-Lyme doc took over.
Started seeing a new LLMD who was putting some things of her own together but she didn’t know what Hynote was doing and not familiar with genetics and things Hynote knew well. So all the Hynote stuff came to a cease and no results. Started back on treatments I’ve already tried and weren’t successful. They still weren’t successful and made no difference. But the new LLMD did get me on IVIG finally since my immune was low enough that Medicare would finally cover most of the treatment. I still had to pay $550 for each infusion but better than thousands. So she was helpful and was one of the only docs I didn’t mind visiting. But she has left the Lyme center for a good cause. So I had to move on.
Yesterday was my first visit with my new LLMD (DO). It is starting to feel like Groundhog Day (movie) where it’s the same routine each visit. Tell me everything and I will try ‘my treatment theory’ on you. But the problem is I’ve pretty much tried them all so I am just repeating treatments. My latest treatment is taking a maintenance dose of Doxycycline which I’ve been doing for 5 years. I’m taking Minocycline (at my request since it’s the only med that reaches my brain barrier and helps with head pressure). I’m back on fluconazole and candida meds but fluconazole can be bad on the liver. Im told to try a gluten-free, sugar-free, dairy-free, egg-free diet because that is probably why I have so much pain! As I told her I don’t drink any dairy, don’t eat eggs, rarely eat sugar…. But I do eat gluten currently but I’ve already tried that same diet for a year. I was off all gluten and everything and notched no difference. I just have osteo issues since I was a baby. And I will be taking silver but not the kind that turns you blue. Pretty much everything I’ve been on for years.
I was sitting in my chair with my sunglasses on (since her lamp hurt my eyes), I was slouched in my chair in pain and sicker from the 2 hour (one way) car ride and she tells me I’m “rebellious”? She told me I can do a ozone colonic/enema and I said “no that’s the one thing I’m not trying I’m not a fan of enemas even at home”. That’s when I was called “rebellious” but she pointed at me in the chair as if I was Joe Cool. I said “I have no quality of life and the only thing I have to look forward to is my tv shows and what is for dinner so now I’m going back on diet and can’t eat food I like and I don’t need to be violated again with an enema as I laughed and joked”. She said at least I had a sense of humor still. But she was telling me “I’ve given up and that’s why I’m not getting better.” Yeah okay. I do everything doctors ask me to do like a lab rat and I feel no better at all or any difference but I keep doing it everyday and buy things I hear about on my own to get better. You think I want to live like this? Every doctor I see tells me they will get me back to normal then later after treating me they tell me I’m too complicated and my Lyme is too old to treat with antibiotics so we just have to try and give me a quality of life. So forgive me for not too excited that a gluten-free diet again will get me back to “normal”. Lol
I guess I’m just starting to see through the BS and fluff. I’m not giving up I’m ready to kick Lyme’s ass!! I do my own research and help others. I try anything I hear that works. I’m just tired of paying money I don’t have to try some things I’ve already tried many times or to tell my life story for 30 minutes again and again to pay $500 for my story and no answers or results. I’m just as sick as I was when I started treating 5 years ago. And some things are getting worse. So I’m going to try all that she recommended but I’m giving my honest opinion when it’s done. She also just questioned if I was only there for pain meds and told me how she is against pain meds and thinks turmeric can do the same job. Doctors have no idea how much pain some of us are in.
What made me mad yesterday was I was told my first visit will be 15 min to see if I like the new doctor and it would be “free”. Then I was told since I need a refill on my pain meds (I’ve been on 15 years) that I would have to pay for a 30 min visit. I ended up paying $550 out of pocket because she kept me there over 30 minutes asking me questions. I didn’t know I was paying by the minute. It’s not a shrink’s office. I had to take yet another urine drug test to get my refills like a criminal thanks too all the prescription drug abuse going on and new law. I also have to see a doctor in person every month (although I can barely leave my house) to have a face to face to get my pain meds. But when you go to get a refill they act like “you’re only here for pain meds? We need to get you off them you are a junkie”. They force you to go get your meds but then treat you like you are only there for drugs and you’re a bad person or druggie for asking? Wtf is medical care coming to? I guess I’m just fed up with all this run around and no answers. I’m not feeling good so maybe I’m grouchy tonight but that’s what is on my mind.
Hope you all are having better luck and success, sorry for a negative post but I’m just getting tired of being called names or treated like a druggie for trying to get some pain relief. Stay strong.