I am new to all of this and I just want to make sure I am understanding my doc correctly. He has told me that no one can know that he is treating me for lymes and that my insurance will cover none of my treatment. Is all this correct?
I have been on minocycline for 6 weeks and will begin benicar in 2 weeks. Everything I have read about benicar and sun sensitivity is making me really nervous. Have any of you had to deal with this? How did you get through it and how long did it last?
Thanks for any help you can give me!
-------------------- lymetwist Posts: 7 | From Virginia | Registered: Apr 2010
| IP: Logged |
Frequent Contributor (1K+ posts)
Member # 16270
Never heard a doctor say that no one can know he is treating you for lyme disease?? That just doesn't sound right to me. I would be skeptical of such a doctor.
Most LLMD's are not in a contract deal with any insurance companies, but will file your insurance and your ins company will then reinburse you at least some percentage of the cost of your visit.
For example since my LLMD is not in my network, I will get 60% reinbursement of what my visit cost vs 80% if he was in the network.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
Frequent Contributor (1K+ posts)
Member # 23691
This doesn't make any sense to me. I'm with suthergrl on this. Their shouldn't be any reason why you couldn't turn it in on your insurance.
It kind of sounds like your doc is afraid of the back lash that might come about by his willingness to treat you.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
I saw your post and it really brought back memories. I lost my insurance well before my Lyme diagnosis, so when my doctor asked about insurance, it wasn't even an issue for me. Unfortunately, in our modern climate of managed health care, incentives and penalties designed to keep costs low are the rule. Most insurance companies would rather deny treatment than cover something controversial. As a matter of fact, they typically deny rather than cover approved therapies these days and many place restrictions on the number of Lyme patients a doctor can treat in their practice.
For that reason, I believe the best thing that ever happened to me was losing my insurance prior to my battle with Lyme disease. That caused me to realize the value of a real diagnosis and the value of treatment for the underlying infectious etiology. It also permitted me to prioritize and compare cost effective treatments. It gave me the conviction to make my own monetary investment count, as failure was not an option because I had limited funds. Lastly, it kept accountants from telling my doctor what he could and couldn't do for me. As a result, my medical professionals and I were free to do as we thought best.
Insurance companies are notorious for taking the stance that Lyme disease doesn't exist, but even where it does exist, it's the over diagnosed pop disease of the decade. Their ``you can't catch it here'' attitude is harmful to patients. Even when patients do have CDC positives, their assumption that ``it's easy to treat'' with a short course of an antibiotic - an attitude that is even more dangerous.
When all else fails and a patient finds a doctor actually willing to diagnose them and begin treatment, the insurance companies are notorious for reporting those doctors to the their state medical boards, which will start an inquiry. At that point, the doctor's records are seized and searched thoroughly. Then, if they can't catch them for malpractice and not adhering to a standard of care because they dared to treat Lyme disease, they will catch them on a technicality: for failing to dot and ``I'', cross a ``t'' or for failing to document something exactly. At that point, they initiate fines, citations and proceed to make the doctor's life miserable.
These actions typically cause problems not only for the doctor, but for other doctors in the practice he or she may belong to. Sometimes other doctors in those practices have reported being told they have to let that doctor go, or they will be the next ones whose licenses are on the lines. (This doesn't just happen to Lyme doctors, but it also happens to those willing to treat Autism and other difficult and expensive illnesses for which insurance deems it better to let patients suffer than pay for their expensive care.)
As for your other concerns. I started a novel antibiotic, anti-inflammatory therapy in 2004. It was known as the MP, or Marshall Protocol., which utilized Benicar and Minocycline and other low dose, pulsed antibiotic combinations. I found it very effective. To date, it has been the single most effective and affordable therapy I've ever done. Thanks to it, I recovered after late-stage Lyme and co-infections and am no longer on any treatment.
I did have a lot of light sensitivity initially, but that eventually eased as my disease process came under control. However, I had to be extremely strict the first year or two. By the end of the 2nd year, I could go outside in the evening and early morning hours when the sun wasn't too bright. As I healed, light and sun sensitivity were a thing of the past and my D dysregulation normalized.
When I first started it, I was very sensitive, but I've spoken with a few others who didn't have that same experience, so it seems to be something of an individual thing. I reached a point where I was able to cycle through medications without Herxing and where my improvement held. At that point my light sensitivity was no longer present. After that, I transitioned off all antibiotics and MP medications and my health has continued to hold without relapse.
At the time I first initiated the MP approach, all I could think of was that I didn't feel comfortable embarking upon so many restrictive lifestyle changes. That was an odd thing for me to worry about at the time, as I really didn't have much of a lifestyle. Today I enjoy a very normal life and am grateful for initial sacrifices because they were minimal compared to the suffering and isolation related to my illness.
When it came to getting through it, I purchased very comfortable sunglasses that blocked infrared as well as UV light. I also wore loose long sleeved shirts with SPF protection and hats to shield my face. Later on, I used special sunscreens with nano zinc. I tried to line up most of my errands in the early, early morning, or evening hours.
If you're going to try to MP and hope to succeed with it, it's very important you have support from others who have been there and understand it. The best support would come from your doctor, but a support group would be helpful. However, I can't in good conscience refer patients to the MP forum at www.marshallprotocol.com because that site proved very toxic and abusive based on my own experience there. Even the private messages at that site were read and patients banned based on those.
From what I've heard through the grapevine, another newer and better website exists for patients on similar protocols. I've merely heard nice things about it, but I have never visited it myself as I was fully recovered when it was started by nurses and medical professionals familiar with that type of protocol. I believe the link to it is:
Tried to keep my son flying under the radar in regards to insurance. Did that for a few reasons, but also knew that they wouldn't pay, so ddn't bother sending for reimbursement. They have paid for the antibiotics though (minus my co-pays), which was a big help....
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |