The $$ cost of Lyme

Good Morning,

I am writing from a place of so much frustration today.

I had my final meeting with my doctor last week. She came in with a lot of information that she had researched - which I give her props for. She is actively trying to learn more about Lyme but, is - self claimed - not an expert.

She did, however, refer me to another doctor in the area who is more of an expert on Lyme.

The challenge I am finding is that many of these lyme "Experts" will not take major medical. They can prescribe the antibiotics and THOSE are covered (since they are through pharmacies) but the office visits are not. From what I'm hearing, many are charging $400 + for an office visit!

She FINALLY did prescribe me my Medical Marijuana card and so, this week, I will be able to at least go in and get my Cannibis oil for the pain. I'm hoping that will make a difference. That said, obviously not covered with medical insurance.

On top of that, if I wanted to go the holistic route, the medicines I am finding are $200+.

How is disease - which is so debilitating - so expensive to treat and not covered by insurance!?!?

I am not at a crossroads in my treatment because I can't afford the $400 office visit to continue my treatment. I just did a 4 week cycle of Doxy, had many Herx reactions and am now on week 1 of not being on anything. I fear that I will only get worse if I can't get this treated soon.

Help? Advice? Guidance?

If it helps ... I am in the state of Maine (the northern part ... near Bangor)

On a side note; I just came back from doing 2 days at Disney World. After over a month of light excersize (due to the reactions and being SO tired from the treatments) we pulled off all 4 parks (Plus Disney Springs) in 2 days!!! 7am - 1am straight EVERY day. Over 27k steps per day.

I am feeling it today ...... I'll say that much!!!! That said, I'm rather impressed by how my body held up.

I don't have a ton of useful advice (others will have more), but one small tip would be to, if you haven't already, radically change how/what you eat.

Eat whole fruits and vegetables, and meats. Don't eat anything that has a label, and you'll save some good money right off the bat.

Again, I know I'm not solving any problems, just a small tip :)

p.s. I LOVE Disney World :)

Thanks Mustard Seed,

For the most part, I have done this. Obviously I didn't in Disney and it has DRASTICALLY made an impact in how I feel. I wasn't about to be miserable in the park, obviously.

Well, I'm sure glad you went then! Just be aware that over the coming days/weeks you may experience a flare of your symptoms is all. Sorry!!

As for the testing, I would say hold off on that at least. Testing for co-infections is less reliable than testing for Lyme. When I got reinfected, I never had any of the testing due to this - although back in 2007, Labcorp ran my Western Blot and I came back fully CDC positive for Lyme and RMSF. I also had Bart, Babs, Anaplasmosis, Ehrlichia and others.

I too thought that the LLMD fees of 350-700 was way too much. Now I wish I had just gone ahead and gone to one a year ago. I got bit in August of 2015 had the bullseye rash so was clinically diagnosed. My regular doctor had me on every kind of antibiotic including a 30 day stint of IV Rocephin. The Rocephin helped but I wasn't allowed to do any longer (insurance or CDC requirement I'm not sure which). Went to one LLMD in March 2016, paid him $700 out of pocket. He basically sent me home with 6 antibiotics and said to try them one after the other and if I found one that worked to call him and he would refill it. He also charged for any phone call.

I didn't feel he was giving me enough guidance so found another LLMD in July 2016. She is helping immensely. Her first visit was I think $450 but it lasted one on one for four hours so not bad for the amount of time spent with me. My adrenals, thyroid, and lots of other stuff are out of whack. Basically peeling back the layers of the onion to get to the center (Lyme). She is doing a combination of prescriptions and supplements.

I wished when I had gotten her information from ILADS in November of 2015 that I had just sucked it up and went to her. I'd be way far ahead. A year ago when I saw people saying they were spending $1000's of dollars I couldn't believe it, but now I do. Thankfully my insurance has covered most of my lab fees. This is a hideous disease and the sooner you take the bull by the horns and do something the better! I'm too chicken to go at it on my own because I've had lots of bad reactions to medicines and things in my life.

I'm in the same camp as Peteza. I spent a ton of money this year and still trying to financially recover. However as I self-educated myself about lyme and co. and studied Buhner's work thoroughly I went the herbal route.

If you get herbs from legit places that are not trying scam ill people you can get a monthly treatment from $50 to $100 bucks a month. Not $200+. I spend $100 dollars a month on my 6 herb protocol. I know, not all people are in a position to even spend that much, but it's not an arm and leg if you prioritize your finances.

I wouldn't recommend self-treating for too many other illnesses but Lyme is one of those illnesses that you really can self-treat, with success.

So once I learned that my LLMD was just overly expensive "prescription writer", I took matters and health into my own hands. At the end of the day all the LLMD does that you can't do for your self is order test and write a prescription.

You can educate yourself for free or for very little, and buy your own herbs and supplements.

Yes, I agree that some physicians assume limitless resources. I just got back a heavy metals test bill. The lab charged 7 thousand dollars for this test. Fortunately my insurance agreed to pay their portion. However, we have huge deductibles and a large percentage of copay. THis is on top of a test that went to Armin that was $600 out of pocket and as negative for any lyme bands .. (regular WB revealed a 39)

I need to ask the doctor how important each of the tests are and then research the costs before doing them.

astroman said...

dacarte3 said...
.................. studied Buhner's work thoroughly I went the herbal route.

If you get herbs from legit places that are not trying scam ill people you can get a monthly treatment from $50 to $100 bucks a month. Not $200+. I spend $100 dollars a month on my 6 herb protocol.

Saved your self quite a bit of $. I noticed many of the brands he recommends are very expensive (very!). And yet, you saw success with more affordable versions.

Awesome.

Yes I don't go to the sites he recommends. I get it from another company that some other lymies on this board mentioned. It is more affordable. Is it as good? I don't know. But as long as I'm not getting worse and only progressing, whether it's the herbs or other things, or even placebo, I'm not going to complain.

Consider bvt ..its effective and cheap ...essential oils rife ...one lady got well after 320k on dr and abx ...ita a rich mans disease ...tara has spent 200k in 2 yra with jemsek and is onlyba littlle beter ..ifnonly we all were daryl hall or yolanda

Can you explain some of the acroynms you are using? Like BVT? Still new ....