Insurance and cost

A first appointment could cost between $700 and $1500 depending on the LLMD practice and reputation. But that appointment may take up to 3 hours of 1 on 1 time.

Follow-up appointment can range between $250 and $500, and may be needed every other month or quarterly based on your progress and reaction to treatment. When I was on IV, follow-ups were monthly. Whe I was doing good I would stretch out to 4 months.
Most of your lab test and Rx costs will be covered by your insurance policy

Treatment can take 2 to 5 years for the lucky ones, and longer for more complex cases.

tickbite666 said...
A first appointment could cost between $700 and $1500 depending on the LLMD practice and reputation. But that appointment may take up to 3 hours of 1 on 1 time.

Follow-up appointment can range between $250 and $500, and may be needed every other month or quarterly based on your progress and reaction to treatment. When I was on IV, follow-ups were monthly. Whe I was doing good I would stretch out to 4 months.
Most of your lab test and Rx costs will be covered by your insurance policy

Treatment can take 2 to 5 years for the lucky ones, and longer for more complex cases.

This is pretty spot on to the costs I experienced with my LLMD

Yes, that's true. I have found practitioners with Lyme experience (mostly functional or integrative medicine doctors) who take insurance, but they are few and far between. Even when seeing them, some of the tests they need to run to treat you properly usually come from independent labs, so they won't be covered by insurance. Most meds won't be covered beyond a short time and no supplements will be covered. Most people need lots of supplements, extensive testing, dietary changes, and other treatments that are entirely out-of-pocket. It's incredibly expensive. Living in Boston, I have spent about $12,000 per year if you count supplements, testing, copays, bills for doctor visits, and other complementary treatments like acupuncture. Most LLMDs around here cost $400-700 for an initial appointment and $150-300 per follow-up appointment, but I imagine that varies. I see similar costs for folks who use standard western pharmaceutical treatment as I do for people who go a more holistic route, although people who have to pay out-of-pocket for IV meds (which in my experience is everyone) can pay several thousand per month. A few people get better within a few months, but it usually takes many years before people find the right treatment combination for their particular situation - everyone's mix of diagnoses, conditions, symptoms, support systems, and long-term damage varies. I encourage you to do your own research also. Every doctor will tell you to treat this a different way, and every treatment will work for some people and not at all for others. A good place to start for me was RawlsMD.com. An earlier poster said 2-5 years seemed average for treatment, and that sounds about right to me, too ... maybe a little conservative. It's always nice to hear about people who got better in less time, but it's not uncommon to hear from people who have been fighting this fight for much longer.

Sorry that I don't have more encouraging answers to your questions!

Sara (Lyme, ME, HPA axis dysfunction, POTS....)

tickbite666 said...
Insurance covered my IV meds, supplies, and weekly home nurse visits for 16 months, after I met my deductible. I held off starting IV until I could change my silver plan to gold coverage with a low $500 deductible. The premium was high, but not as bad a getting a $5000 deductible bill at the beginning of the year.

In some ways it is easier to select your health care coverage when you know what your treatment plans are for the following year. I just got thrown a curve in my treatment costs with over $14k (list) in labs for IVIG related screening. This will end up costing anywhere between $6k and 10k out of pocket after $5525 deductible and insurance company contract reduced rates.

Wow. Its one thing for Rx coverage at the pharmacy (easy).. But I.V. meds are attached to the nurse visits which most insurance wont cover for "lyme". Did they hide it / code it as some other illness?

So this is ABX IV, and IV Immunoglobulins?

What were your "labs for IVIG related screening" ?

I wrote several posts on Immunoglobulin levels and testing (with the other immune cells too) last summer but dont remember who all commented.

That why I asked about "IVIG screening labs" - as to the details of what was tested.

I have full lab coverage as long as its a "normal lab". I had detailed specialized immunoglobulin panels as well as several methods of T, B, and NK cell lab tests from three different "normal" labs. All covered under my insurance plan.

This had nothing to do with lyme from an investigational view point, no LLMD either, just low cd57 on my behalf and low WBC count led to more immune cells investigation from regular Drs. I pushed this of course, but not with "lyme" attached to any of these Dr appointments, just Immunodeficiency as a diagnosis.

IV immunoglobulins are usually only covered with sever immunodeficiency, it can be very costly. Not considered part of lyme treatment from an insurance prospective. I went to one clinic to learn about this, They said good luck as you are not sick enough to be covered (I feel great).

Ive never seen this stuff below to the line.
Some antibodies Ive never seen. Was this a conventional labs and Dr or specialty labs more in line with alternative medicine?

Autoimmune Neuro AB
ACHR Binding AB $257.66
Striated Muscle W/RE $160.31
VGCC AB Assy $347.13
Alpha 3 AB $504.40
VGCC Type N AB $260.45
VGKC Antibody $408.82
Neuro AB SCR, IFA W/R $4402.03
Neuro AB, CBA IFA $3000.00
DPPX Recepto AB CBA $165.00
Neuro AB, Line Blot $3288.21

-----------------------------------------
This group is conventiona medicine / conventional labwork ,quest, lab corp ect., covered with good plans. Your T B and NK's must be hidden in the subclass (?), those are a main part of fighting infections along with the immunoglobulins.
Amylase $ 49.49
Lipase $ 65.24
Protein Electro $ 79.65
Immunofixation, seru $213.72
Immunoglobulin A $60.75
Immunoglobulin M $60.75
Immunoglobulin E $89.99
IGG Subclass Panel $466.81
ANA SCR, IFA W/Refl $413.13
Rest are my quarterly tests
CBC (Diff/PLT) $45.50
Chem Test 14 $65.08
Vit D, 25-0H, Total $241.84