Originally Posted by Ellie

I've looked into several LLMD's in California (and I cannot afford to travel far, nor am I permitted to drive far due to seizures).

While I can only assume LLMD's in CA (and probably world-wide) are protecting their assets (remove the 't') by charging these outrageous prices per hour, per visit and even per phone call - the providers in CA are protected by law. Thus resulting in some slight bitterness on my part as it's almost like this ailment is viewed as a cash cow.

It's easy to say to get these lab tests done via IGeneX and Fry Laboratories, but it's not easy for a lot of people to pay for these services, all of which need an up-front payment and do not offer any type of payment plan.

Furthermore, every provider within a decent distance of myself also require up-front payment and anyone notable is $400.00 per hour up to as high as $650.00 per hour, or per visit (which I assume is around an hour). The 'cheaper' ones run around $250-300 with the 'cheapest' being a LLNP. The 'cheap' and 'cheapest' I mentioned are a group practice which advertise Lyme treatment on their website, albeit do not belong to any organizations such as ILADS or CALDA and have passed up 'proper' training to give themselves the LLMD or LLNP title, instead they use the title without training. They are *gasp* a FMG/CFS specialty office and treat using things like peroxide IV's.

So when you step back and look at the big picture, unless you're financially stable or get lucky and find someone on your insurance plan to treat you until you are 'cured' (I use that term as loosely as possible) - to be quite frank, you're screwed. I'm screwed.

It's an unsettling feeling to just play the sit and see game, especially when you know that there's really no getting better. It doesn't go away, unfortunately. My Rheumatologist looked at me with a straight face and told me she 'cured' my Lyme and now I have FMG - which I know is silly. My only affordable option is a NP who has had zero training in diagnostic, treatment and other pertaining information regarding Lyme Disease who wants to give me various herbs and a peroxide iv. I think I'll pass and use my money on the lottery, that way I can hopefully win and feed the proverbial cash cow.

The only part that really gets under my skin is that I know who I am is potentially at a risk here. I can deal with the pain, I can deal with the constant fevers and everything else. I don't even mind that I run into everything versus being able to walk past it. What I cannot deal with is the loss of my thoughts, that I have to really sit and think to write, type or speak a word because my word finding and gathering skills are significantly decreasing. My word placement is completely backward now when writing or typing. These are things I've always been passionate about, and I'm not eager to surrender them, not without a fight.

Having said that, I'm going back to college and God willing, I'll just treat myself in 4-6 years.


Pardon my ranting and rambling, but this always seems to be the side that's hush-hush or not discussed. The side that has an impact on tons of people who thought they were financially stable and then realized they can't afford to keep themselves from becoming terribly ill. It's the worst experience I can think of, next to losing my health insurance. Which I just did.

I probably need a nap, I have a gut feeling that I'm cranky.


For the record, this is a second infection. I was sero-positive also with an EM rash (multiple EM's later displayed to show early disseminated disease). I was tested for some, but not all co-infections via standard labwork. The first infection was as a teenager some odd 15 years ago, my mom recalls a week of amoxicillin. The second was last July which treatment didn't start until September I believe, which was approximately 2-3 weeks of antibiotics.

It's hard to differentiate what is what as I had neurological complications prior to the July infection. I won't bother theory-crafting about if it's due to the past one as a teen or not, as I had a lot of health problems as a child which could just as easily be the culprit. Having said that, I have a severe midline shift to my right, I have a complete loss of peripheral vision, I am unable to focus (although I got some performance lenses to assist me). I have seizures, basilar artery migraines, cluster headaches, and other headache-related symptoms. I was diagnosed with: Temporal Lobe Epilepsy, Partial Complex Seizures, Juvenile Myclonic Epilepsy, Parietal and Occipital lobe seizure/dysfunction, and I'm sure I'm missing a few - These all came from different doctors, neurologist and epileptologists.

I also have; Trigeminal Neuralgia (right side, not bi-lateral), small bowel obstruction, endosalpingiosis, a lot of fibroids, complications with extremely swollen lymph glands (i mean its really bad and gross, I have pics), skin tearing/peeling, hair loss, memory loss, hand tremor, swollen joints and knee, ovarian cysts, FMG, CFS, IBS, and other stuff. While typing this I realized that it makes me feel 'broken' so I'm going to end that here.

It's really a shame, though.

Originally Posted by Ellie

Yeah, I have learned a lot about the ones who claim to be something they're not. I research everyone in advance and also call to verify their training (CALDA/ILADS). I've found a couple 'round here who are fibbing.

I've checked into SPECT scans and thankfully AMEN is somewhat close with two locations in CA with someone trained to look for Lyme brain damage. The cost isn't in my budget, one wants a pre-pay then they superbill insurance and the other will take copay and bill insurance then you. However, I just lost my insurance so I'd be a 'holy crap pay it all' patient. I'm going to have to ride it out a while and then hope everything just takes it's time if it decides to progress until I can get this all back into order.