UPDATE: Lyme Diagnosis after over 5 years of suffering

They don’t all charge that much and some states reimburse including the state I live in. If I go and test positive and my insurance was issued out of the state I live in (unfortunately it’s not) my insurance would cover all treatment including office visits. The documentary covers the reasoning behind why a lot of LLMD’s can’t accept insurance.

Scott and Rockergrl - I’m not sure if you watched the documentary or researched any of the links I sent, but if you do you will have more of any understanding about the insurance issue. I am too sick to explain in much depth, but it is a very valid question about why some LLMD charge high fees, so wanted to get back to you on that.

Firstly, let me start by saying that the highest fee is during the first appointment. That appointment has been 4 hours for myself, and I believe even more time was set aside for this appt. On days that my doctor sees new patients, he only sees 2 per day, and it takes up the entire day. let’s put this into perspective. My migraine specialist has charged me over $400 dollars for a 20 minute visit. He makes more than 3X of what the most expensive LLMD makes during the same time period.

This extended first appt is vital. By the time someone gets to a LLMD, sadly, they are often housebound and essentially bedridden (like myself), and come with a huge medical history after years and years of misdiagnoses and symptoms that are multi-systemic. People who are found to have Lyme are oftentimes given a laundry list of diagnoses through the years. Going through that history, carefully, is no easy feat. It does, indeed, take that time. I needed every second of those hours. And, this also Includes a proper exam.

with all due respect, Scott, please put yourself in the shoes of someone completely healthy and now bedridden with a list of debilitating neurological symptoms with no objective testing findings. I say this as I know you are a reasonable man (and greatly respect you), but it is extremely important to try to understand that this extent of disability that I endure every single day is much different than an episodic migraine or episodic vertigo. I know I keep on stressing this, but it’s very important to do so. I appreciate you being skeptical. I think it’s important. I am a very skeptical person too (especially when it comes to my healthcare), and examined and researched Lyme extremely carefully.

It surely isn’t ideal that many LLMDs charge pretty high rates and many don’t take insurance. but, if you take time to truly understand this illness, you will see that LLMDs are working in an environment that is far from ideal. I would never spend this amount of money without understanding the reasons behind it, and having met with these doctors for nearly 4 hours, I now have a much better understanding.

it is also no easy feat to come up with an individualized treatment plan when treating a Lyme patient. There is no comparison to the complexity of treating Lyme versus migraines. I appreciate that we can have a kind discussion. Please know that my passion for this topic stems from my desire for people to get well.

I am so sorry for you. this is so horrible that you have had to wait so long to get this diagnosis. These doctors make me so mad. it is just the worst how they treat you as if you are crazy. I am sure you had to go through this. I really hope this helps you get better and you can lead a normal life again. Well I wanted to ask you a question, but my freaking brain is so foggy that i forgot. lol. im sure it will come to me soon.

Just saw this. Thank you so much!!

Hi Lisa,

You appear to be 4 months into this. Any progress?

Thanks

I haven’t been steady with treatment for 4 months. Was spending much of that time waiting to be seen by a particular Lyme doctor who has likely treated the most cases of Lyme through the years. I have been with him for 1+ month, and am treating Lyme, Babesia, and Bartonella, with combo of antibiotics and anti-malarials. It is actually the coinfections that have likely knocked me down the most. Will keep you posted throughout my journey.

It sounds pretty full on treatment Lisa. We’re all sincerely rooting for you and hoping it will bring much needed relief. We know too that it’s not going to be an easy road and wish you all the very best. And yes, please keep us updated - having followed you on your journey for a few years now, we just have to be alongside when things turn around for you. That will be a great day!

Brenda

Brenda - Thanks for your incredibly kind message. I greatly appreciate it!!!

— Begin quote from “MAVLisa”

I haven’t been steady with treatment for 4 months. Was spending much of that time waiting to be seen by a particular Lyme doctor who has likely treated the most cases of Lyme through the years. I have been with him for 1+ month, and am treating Lyme, Babesia, and Bartonella, with combo of antibiotics and anti-malarials. It is actually the coinfections that have likely knocked me down the most. Will keep you posted throughout my journey.

— End quote

Good luck Lisa, wishing you every success on what has been a very long road for you. X

Victoria - Thank you so much. you’ve been so kind to me through the years! hope you’re doing well

Sorry for some repetitive parts. I am copying this from a post I just wrote in General Discussion. Wanted to give an update.

I have been extremely ill for 6 years, essentially bedridden - My worst symptom is dizziness (which is an understatement) in the form of a 24/7 VIOLENT rocking sensation. I am unable to stand or walk without holding on, etc. and have intense spinning sensation in my head and frequent brain zaps, making it nearly impossible to contend with any stimuli - it is like I am a prisoner of my environment and body for 6 years. Bone-crushing fatigue, and so much more. For 6 years, I was diagnosed with Migraine Associated Dizziness. I tried countless migraine preventative - Anti-seizure meds, beta blockers, Calcium channel blockers, SSRIs, Tricyclics, all to no success. I continued to search for answers.

I began treatment end of January. I started very slowly. But, I eventually switched to a doc end of March who treats much more aggressively. As typical in Lyme treatment, you get worse before better as the bacteria is killed off. It was the hardest thing to continue to take all my pills everyday, watching myself get sicker and my body wither away and weaken further. I am treating Lyme, Babesia, and Bartonella, as MANY who have Lyme also have these coinfections.

I have finally noticed some gains for the first time in 6 years!!! For the first time in 6 years, my rocking sensation is less violent, such that I can finally feel the ground. I have been walking around my house all week, as I am just in shock to not have violent rocking. I never knew what my own floor at home felt like if that makes sense. I can now feel the floor again! My flu -like symptoms are also lessening a bit and brain zaps, blurry vision, and spinning in my head slowly improving. And, I was even able to play with my children. not run around with them of course, but be with them! and smile for the first time in years. Recovery from Lyme is a marathon and I have a long road ahead. It is also not linear. But, I am so grateful to have improvement after 6 years.

Thanks for all the support here all these years!

— Begin quote from “MAVLisa”

Scott - please read
ilads.org/files/ILADS_Guidelines.pdf

— End quote

Note the following disclaimer written in these guidelines. These guidelines are not endorsed by the mainstream scientific community.

Summary & disclaimer
These guidelines represent an evidence-based review of Lyme and associated tickborne diseases by the International Lyme and Associated Diseases Society (ILADS). Although the guidelines present evidence-based approaches to the diagnosis and treatment of Lyme and associated tickborne diseases, [size=150]they were not intended to be a standard of medical care[/size]. Physicians must use their own judgment based on a thorough review of all available clinical information and the Lyme disease literature to decide on the best course of treatment for an individual patient.

Well, it’s been one year since this Lyme monster was let out of the box. Anyone know if Lisa is still going after this diagnosis? I haven’t seen any posts on Facebook for a while but last I saw there was little change despite endless antibiotics going down the hatch.

edit: heard that she is now having antibiotics mainlined into her veins with no improvement …