Doesn't seem fair, I know. If you have insurance you should call them and ask if you can be reimbursed for a visit to your llmd. Many times they will do this.

My son had a $900 charge for his visit and then got all but $50 back from his BCBS. He put the $900 on a charge card.

I'm right there with you. We paid $500 for our first visit (1hr - lasted a bit longer w/o additional charge) and will be paying $250 per each additional 1/2hr visit in the future. Her initial tests cost approx. $800 and additional testing is a 'for sure' thing in the future as well.

I don't know how we're going to continue scraping up that kind of money, but I will sell everything I have in this world and go to the depths of debt h*ll to see this through.

If we end up bankrupt, so be it. Maybe we can fight the gov't for money if that ends up being the case.

I know this doesn't help you much, but I feel for you as we're pretty much in the same situation. We have a bit of money tucked away but certainly not enough.

I hear your plight! You and a lot of other people! Infectious disease along with every other major disease in this country is rapidly becoming big business. In one state and maybe others the initial visit is $2000. That is criminal and should not be allowed. Efforts are being made to stop such pirating.

First do not panic! I think FEAR is a huge culprit with any disease and will serve to only make matters worse.

There are other avenues that you can take. I am not at liberty to prescribe anything to anyone for any reason. I do know that we still have freedom of speech as of today so, look on this site and others for alternatives!

Hit the search button below "post reply" and look at all of the alternative things that can help you. The important thing is NOT to panic about not being able to go the medical route if something does not open up for you at this time.

Look at Rife and Electromedicine and Lyme on Google and this site. Check out the info on Magnesium, Salt and C, Samento...there are LOTS of differing opinions on each of these threads, but look and explore the information.

Look at all of Gigi's posts and Marnie's posts and theskyking. There are controversial opinions. You can research kinesiology to see what strengthens and weakens you.

You can look at dietary changes, eliminating sugar, what to avoid, things to strengthen your immune system.

There is a wealth of info on this site re: things that currently do not require a prescription if you look. Last time I checked we could still get supplements and even that is being challenged.

I have a friend who cannot take any antibiotics and has tick borne illnesses. She utilizes the alternative methods solely and has never had an antibiotic.

Be at peace and best of health to you,

He's been treating lyme for years, strictly antibiotics, not really alternative treatments. He is very empathetic with those who do not have much. He is not an exclusive rich patient doctor at all. He sees many farmers, working class folks, etc.

The only kicker is that you have to be able to make it into the office every month. It has to do with insurance among other things.

With me, he treated me clinically (because of symptoms, not test results) for the co-infection bartonella. He said I didn't need to get (and pay for) a bartonella test unless I had a burning desire to. He also saved me $180 at IGeneX by not requiring me to have that test for lyme. I had come in with a very positive Quest wb for lyme and he said no further testing is necessary. I obviously had lyme from symptoms and the Quest wb.

Email me with any questions.

Personalyy I think it is essential to have one.

The first time will always be more expensive.... 900 is a wicked crazy amount though.

I dont know what part of pa you are in ... is there anyway you could get to the llmd fish and crime of lyme reccomended... in western pa?

also sometimes insurance companies pay a percentage of out of network drs if you submit the form... maybe you could ask your insurance company.

Please try to find a llmd ..... if you cant get to that one ....post that you need a llmd and the areas you are willing to go to pa, nj, ny or wherever.

Please keep in mind that Most of us have to travel to see our llmd.

Really please try to find a llmd... I'm not sure how severe your symptoms are.... but this disease can progress to a point where it can make life very hard.

I've been disabled from it since sept 2000.

Please dont give up.

Best Wishes

What I am going to write to you will, undoubtedly, be considered insane by about 99.9% on this forum. But, here goes.

I had the same problem. I tested positive with my Primary Physician. I was worse after 5 weeks of the Doxy she put me on. She said I needed to see a Lyme specialist. I called a very famous one in CT. His rude receptionist told me that I needed to show up with $700 in cash and I couldn't be seen for at least a month. She also said they did not take any insurance and I would be responsible for all tests and all payments at time of visit. I nearly cried.

My Primary suggested I see an Infectious Disease MD who treats aggressively for Lyme and takes insurance. I called his office, got an immediate appointment, was put on IV right away and, I have been monitored every single week by him and/or his staff of nurses for 2 years now.

I have not had to pay any more than what the deductable was on my insurance. His office handles all of the paperwork. My treatment has not been denied by insurance and, I can tell you it was about $56,000 for the first year of IV and orals.

That said, you might consider seeking an MD who treats Lyme and is on your insurance plan, even if he/she is not a so-called LLMD. Most LLMDs are great but, I am appalled by how some of the elite ones do business. Yes, you have to be rich to be treated by some.

So, seek out the one that the other 2 PA people mentioned or find an Infectious Disease MD who has a good track record for treating Lyme successfully, one who follows the ILADS Guidelines.

You are the patient, the one hiring the DR. You have every right to ask that he/she treat you in accordance with certain guidelines.

I wish you well. Stay calm. This will sork out. It has for me.

The MO is to do as little as possible, to get the money up front and to keep the patients coming back-draw out the process (and the money) as long as possible, and patient dump the ones who catch on or who've have been financially wiped out due in part to physician gouging.

What amazes me is that patients do not see how they are being ripped off, and think that they have to provide free marketing and publicity services for their LLMD's.

As long as this type of physician is involved in the "Lyme movement" Lyme will never be taken seriously, and there will never be funding for research and treatment. Think about it, why would these physicians have any financial motivation to get research funding, they would never want to loose the cash cow or patient worship/cult status that this small minority have grown so used to.

I can't tell you what to do,but I would read some of the papers written by the cash practice LLMD's. Do read them with a grain of salt-and then find a responsive PCP who is willing to work with you to implement the protocols. They are out there, you just need to work a bit to find them.

It is unfortunate this minority of practioners has so overshadowed the many LLMD's who do practice in good faith and within the confines of the system.

And, don't be intimidated by some on this forum who call ALL Inf. Dis. MDs quacks. It is an unfortunate generalization. I don't let it get to me because there is lots of good info here and some experienced folks to gain insight from. Read and participate with an open mind.

Chin up.

I think there are doctors calling themselves LLMDs who are now stepping in to take advantage of the situation and it also seems that some of them have no idea what they are doing. It's best if you read everything you can...

Be sure to check out the cyst forms of lyme (eggs and hibernation forms) and what antibiotics are used for those.

It may very well be that lyme is like a bacteria called h. pylori- which has a very simular life cycle and requires antibiotics which addresses both adult and egg forms at the same time. It can take a while to get the spirochetal load down low enough to tolerate this.

Rocephin is standard tx for neurological involvement. It's in all the Infectious Disease manuals. It has good tissue and brain penetration. There have been a lot of relapses after taking it, but it's only fairly recently that flagyl is being added at the same time.

It's very possible there is a happy medium between both sides of the lyme controversy.