Is Amoxicillin better? I am taking 1,500mg per day right now. I have a follow-up on Friday to discuss increasing or changing my antibiotics.

has the same depletion list as Rocephin.

What needs to be considered, it the effect on the Lyme. You can always make
up the depletions. The actual effect on the organism I think, is the deciding
factor.

orals are great if you are realteivly new and not neuro-

if you are neuro you need IV or IM-

I needed 9 months of IV Rocephin- the first 6 I had no big changes at all!!!
One year of orals did NOTHING- I just got worse & worse!!!

Make sure to get treated for coinfections because they are the rule not the exception. In our 350 person support group from the last 8 years mayb 5 people have JUST had Lyme- the rest have all had mixed infections-

Babesiosis- Ehrlichiosis- which require different drugs- so you need a good LLMD!!!
Sincerely,
Sarah

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

im notsurehow to reply, i never talked on forum ever. but ellies story braught tears to my eyes cos it sounds similar to mine, for the first time i meet someone who has been where ive been. i belive i got lymes when i was 12 and preliminarily dx with juvie rheumatoid arthritis. too many symptoms to list, my arm hurts too much too type too good. i am now 40. been to specialists, misdiagnosed over the years. now i find out, not only is it lymes but late stage neurological lymes. i can take the pain, physical discomfort, but i lost my mind, had psychotic episode few yrs ago, my husband divorced me. i now have the same pains in the same migrating joints and muscles but i have short term memory loss and i get lost driving around. i even got DUI when i was not intoxicated, just confused and hurt. it is a joy to read your stories, yet it is bittersweet because so many people suffering. i grew up in NJ cruised the woods every day after school, studying insects, birds, local wildlife. i had such a voracious appetite to learn as a grade schooler. shortly after i got sick. rash joint pain fatigue, insomnia i lost the use of my arm temporarily the works. it just wasnt well known back then. i never heard of lymes then. right now i can think good enuf to right. but tomorrow ill probably forget the name of this forum, or that i even joined. but now i know im a survivor.