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Lyme Disease Support Network

How is everyone affording treatment?


#1

Hey everyone,

Brand new to this group! So, when I was first told about my positive lyme test I searched the web for support and mostly looking for competent doctors and suggestions for treatment. I was not ready for the answers I received. Over and over I was told I needed to take the holistic approach which I greatly admire. I was told I'd have to travel very far to get to a decent doctor and keep traveling to them. That was upsetting. So, I started off with a naturopath and after 2 visits my family had to put a stop to it because it is SOOOOO expensive. I'm honestly floored with the amount of people who are taking this path because of the cost. My family is not rich but not poor either and it's just not realistic in any sense. I've reached out on other groups and actually seem to have been kind of, eh, looked down on for not "doing whatever it takes". I'm ready to do whatever it takes I just can't make money come out of nowhere. How do you guys do it? Any suggestions or success stories?

I have been given the month long dose of doxy and amox. I've been given a psych diagnosis at one point and was treated for one. That has since been completely ruled out and I am off all of those meds that made me feel even worse. I have been told it's fibromyalgia, chronic fatigue, anxiety, ibs, pcos, the list goes on. I think the most recent is POTS as a suspicion. My family doctor just put i a referral to the mayo clinic. I'm pretty hesitant about that. Western medicine IS failing me but what are the other options?

I should mention I do have great health insurance.

$$$$$$$$$$$$$$$$$$$$ (my retired grandparents are the ones funding everything for me. They have gotten a reverse mortgage and have spent their entire savings over the past 8 years and they have very little left to offer)


#2

Western medicine cannot cure everyone – there’s no arguing that. Alternative practitioners use this reality to entice clients by suggesting, “If western medicine can’t cure you, we can.” But many of them offer remedies that are unproven, leverage the placebo effect, or may even worsen problems. We know of a number of stories where families have spent all of their savings seeking elusive cures that didn’t materialize. The lure of the cure is very strong. And the internet has a way of making misinformation appear authoritative. If we see things in print, we tend to believe them.

Putting aside all the names of diagnoses you have been given for the moment, what types of symptoms are you experiencing? And have tests turned up significant findings? How certain is the lyme diagnosis? I would like to hear more about when you became ill and what you are experiencing.


#3

What I see here is that a lot of the treatments offered aren't covered by health insurance becuase they have not been proven in studies (or anywhere else for that matter) to be effective. What happens with Lyme is that there is the initial infection after bite exposure. That is treated with the appropriate antibotic course, based on the severity and system involvement of the Lyme ( i.e.; within the body, within the spinal cord, or brain, or in joint space) and then the Lyme is erradicated. What happens next is what brings people to pages like this. Symptoms can appear later like chronic fatigue, new onset of autoimmune disease, joint pain, memory problems *brain fog*, etc.. These symptoms are not Lyme disease or chronic Lyme disease. The irritation to the body from the first, inital Lyme infection can cause an auto immune reaction in people, and leave them with symptoms LONG after the infection is GONE. The treatment for these conditions is no different than someone who got them as a primary condition or secondary to another chronic illness. The problem is that some of these, like Fibromyalgia Syndrome *FMS*, or Chronic Fatigue Syndrome are notoriously difficult to treat and get good results from treatment. It can be a very frustrating journey to get control over them.

POTS in adults is VERY RARE. Run from whomever is trying to tack that on. With FMS and Chronic Fatigue, it is definitey a guessing game when it comes to treatment. There is some newer information that states that combination treatment with more than one medication is getting some good results. I'll give you a link here:http://jama.jamanetwork.com/article.aspx?articleid=183189. I think that is the right study. Basically, it says that people do better with a combination of low dose antidepressants. Helps to control symptoms of FMS like pain, sleep disturbances, depression, etc. With conditions like CFS, and FMS, treatment is a Craps shoot...you never know if it'll work or not. You (the patient) have to be okay with trying different things until you find what works for you, because there is not a lot that we really understand about either one at this time. There are more studies happening though, so hopefully in short time, we will have more answers that questions.

Do your best to be your own best advocate. Make sure that you really need all of the tests they want to run, make sure your insurance covers the meds they want to try (if they don't cover all of it, get online for a copay card. Most brand drugs have them), and make sure you really need whatever it is they suggest. Conventional medicine will be covered by insurance, but herbalists, and naturopaths generally are not. Do your best to function within those limits. Some insurances do cover things like accupunture, some docs reccommend Melatonin for sleep problems, and probiotics for GI distress, and some even prescribe acidopillus whenever they write for antibiotics in order to preserve gut flora, so there is a way to get some of the care that you are looking for within the "western" mold.

I feel your pain though; there are times that I feel that all of my mail is related to medical expenses! Why won't someone just send me a nice card or a letter?