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.

I'm not screwed at all, my LLMD costs me $10 an hour. Co-pay with my insurance and he's a real LLMD. The other local ones here all take insurance.
I will write you privately re some names- wait what about Doc Y????

All of our local ones are insurance. The best ones in SF do cost a lot but so do any specialists- and truthfully, they see poor people for almost nothign.

HEck, if you truly want a cheap LLMD Doc Yang of Santee saw people for free for years and now only charges very minimally. Call her office.
Here's an article on her- whoops- forgot- can't post newspaper articles here- um- here is the connection to her website- she used to be 100% free.

http://www.dyfc.org/lyme.htm

She used to draw no salary. I knew her accountant, he was the brother of a woman who died and is on the Lyme Disease Memorial Page. Her office staff got paid through donations. She's incredible/ The last few years she does charge people a small fee because her office staff got upset-but I have heard if you really can't afford it she will stil TREAT YOU FOR FREE- you can't ask for kinder than that-

This is her addy & her phone number and HER email- all of which she wants open on the INternet- she;s a truly nice person- a good person- and a good Lyme doc- she TRAINED Doc Harris, junior, Steve Harris. He was her partner, not romnatic partner, medical office partner, for a few years...

Address:
10201 Mission Gorge Road, Suite A
Santee, CA 92071

PHONE: 1-619-596-4963

Dr. Therese Yang
yangdyfc@hotmail.com

The only thing people find annoying about her is that she became a doc for Lyme patients because Lyme patients are so screwed because she's a fervent Christian- and she prays once in a while with patients- (I'm not a Christian so it would annoy me but she is well meant).

And she IS a real LLMD.
Her husband is a doctor and they live off his salary.

If you go a google search you will find an newspaper article about her when they tried to take her license away (not spurred by patients by insurance companies).

If you can travel there and stay with friends, she is almost free.
Best wishes,
Sarah
p.s. and locally we have lots of cheap ones-

I've read a lot on her. I'm number 102 on her wait list.

She really is great. That whole mess where they went after her- they have gone after as many Lyme docs as they can for anything and everything- seriosuly! She is a good doctor. We had someone fly down to see her who is in full remission today. She didn't give her any pain meds because she was a tough chick who didn't want them. She is doing great now!!! She had 3 little boys in a row after getting better! A real success story-

May we all get full remissioN*)!!
Best remission wishes,
Sarah

Hi Ellie,
Try not to lose hope yet. I go to that well known LLMD in SF and I don't pay much more than Sarah does. He took insurance until this past year. He is normally expensive but as Sarah mentioned, he doesn't charge much for poor people. It may be hard to get in under that premise, I've been seeing him for a while. Hopefully, there are other LLMDs near you that are equally generous.

Please be careful about who claims to be an LLMD. There are some out there who claim to be so trained, but them "suggest" all kinds of crazy stuff to their patients who usually listen to their doctor.

Generally, doctors will stick with orals for a while to see if they will help, simply because there are likely to be more unexpected problems with an IV. Doxy is normally the first antibiotic prescribed and has pretty good brain penetration, but people have different levels of success with different antibiotics. Also, allergies limit what can be taken as well (PCN and anything related to it for me, I am massively allergic). I think which antibiotic is more important than how it is adminstered, in general. I think people's bodies make more antibiotic available in our systems when administered through IV, but if the antibiotic doesn't work as well as an oral antibiotic, that isn't going to matter as much.

It sounds like you've probably had every test involving your brain there is but SPECT scans are very good at both verifying the pressence of lyme (you get a big head!) and at tracking how you're doing over the long haul.

I'm new to the forum but I've had lyme at least 23 years, was diagnosed four years ago (by accident actually) and my symptoms are almost all neuro. I can really relate to the lyme brain. It is very frustrating sometimes.

I hope you get over this quickly, just make sure you do not go off antibiotics too soon.

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.

Update: I'm leaving NOW for my appt with Dr. Yang

How'd it go?

She said she can 'fix' me, but that I have a very long road ahead of me. She has to go for co-infections first and then Lyme. And it's approximately 6 months or longer before the Lyme will even be addressed. She said some of the things can't be reversed, but hopefully most of it can.

It was a good feeling, but I don't think the treatment is going to be an option for me as I cannot afford to even have the testing she wants done. I made a larger post earlier today to get some of those things off of my chest, but I'm just not feeling to well right now.

sorry to read that-
I am sure she can help- I wish I was rich, I'm not- I would send you the $ if I could!!!
best wishes,
Sarah