New Lyme Article from the Boston Globe

[EAMom]

It doesn't mention the new Lyme culture test

 

http://www.bostonglobe.com/metro/2013/06/01/lyme-disease-rise-and-controversy-over-how-sick-makes-patients/OT4rCTy9qRYh25GsTocBhL/story.html

[Hopeny]

Full of misinformation. Steere has done so much harm.

[filinha1]

Interesting. I find it hard to place a lot of blame squarely in the lap of a researcher like Steere; he may be guilty of being incorrect in his conclusions and may not be asking all the right questions in the first place, that much is true. But Steere clearly isn't a dummy and likely isn't an uncaring monster. When there is equally compelling science that contradicts research like Steere's, I blame our insurance companies for adhering to the views of the side that costs them less. After all there are two diametrically opposing viewpoints in the medical establishment - not the mainstream and some fringe noisemakers, but heavy-hitters on both sides.

 

If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate.

 

I think our best bet is to lobby our local and state politicians, to force laws that require insurance to pay for treatment that a licensed physician has prescribed for his patient.

 

Heather

[KaraM]

So, I actually talked to her for about an hour...She didn't even want to touch Bartonella when I mentioned it. I think she wrote me off after that. Nothing I mentioned was touched upon. Maybe I was too PANDAS focused for her purposes...I don't know. I was pretty disappointed in the article.

[filinha1]

So, I actually talked to her for about an hour...She didn't even want to touch Bartonella when I mentioned it. I think she wrote me off after that. Nothing I mentioned was touched upon. Maybe I was too PANDAS focused for her purposes...I don't know. I was pretty disappointed in the article.

Kara, I just tried to pm you to say hi, but your box is full. Heather

[EAMom]

"If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate."

 

My theory is that IF docs (mainstream medicine) were more attuned to Lyme, diagnosing, testing, and treating promptly, lots of money would actually be SAVED by insurance co's in the long run. Just thinking of my friend's dd with Lyme. They got the run around for over a year (until I convinced them to see an out-of network integrative doc who finally did proper Lyme testing). In this past 1.5 years (and still going on) they have seen multiple docs in many specialties, rheumatology, infectious dz, psychiatry, physical therapist, pain clinic, ER visits. Their insurance co. has to pay for all these pointless visits, and would have actually saved a lot of money by testing and admitting she had Lyme/coinfections early on.

[filinha1]

"If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate."

 

My theory is that IF docs (mainstream medicine) were more attuned to Lyme, diagnosing, testing, and treating promptly, lots of money would actually be SAVED by insurance co's in the long run. Just thinking of my friend's dd with Lyme. They got the run around for over a year (until I convinced them to see an out-of network integrative doc who finally did proper Lyme testing). In this past 1.5 years (and still going on) they have seen multiple docs in many specialties, rheumatology, infectious dz, psychiatry, physical therapist, pain clinic, ER visits. Their insurance co. has to pay for all these pointless visits, and would have actually saved a lot of money by testing and admitting she had Lyme/coinfections early on.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream.

 

I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established.

 

Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future.

 

I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game.

[filinha1]

 

"If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate."

 

My theory is that IF docs (mainstream medicine) were more attuned to Lyme, diagnosing, testing, and treating promptly, lots of money would actually be SAVED by insurance co's in the long run. Just thinking of my friend's dd with Lyme. They got the run around for over a year (until I convinced them to see an out-of network integrative doc who finally did proper Lyme testing). In this past 1.5 years (and still going on) they have seen multiple docs in many specialties, rheumatology, infectious dz, psychiatry, physical therapist, pain clinic, ER visits. Their insurance co. has to pay for all these pointless visits, and would have actually saved a lot of money by testing and admitting she had Lyme/coinfections early on.

Agreed, lot's of money would be saved, but probably only in the case of the smaller percentage of people who swim upstream.

 

I think insurance companies count on most people choosing the path of least resistance when dealing with any illness whose presentation has a significant psychiatric presentation - psychotropic medication. This is also the least expensive for them as those pathways - psychiatrists and drug company pricing - have been well established.

 

Adding the insurance piece to any complicated disorder is crazy-making. Our insurance will only pay for the first visit with any new specialist, after which we have to get pre-approval or pay out of pocket. In our desperation at times to get timely treatment we have chosen to forgo the pre-approval process and just get the help...and paid out of pocket. We have also paid out of pocket to cover psychiatry rather than have our daughter labelled with a catalog of acronyms - BPD, OCD, ADHD, ODD, GAD - that may affect coverage in future.

 

I don't have what it takes to find the best docs and treatment for my daughter and fight our insurance company at the same time. I admire people who can take both on - get help for their loved one and make sure it gets paid for. So far, our insurance company is way ahead in this game.

EA, I went on a bit of a tear about insurance and didn't carefully read your post, but your point is true - IF more mainstream docs were attuned to Lyme then time, money and effort could be saved for all parties.

[EAMom]

I should add that this mom was asking about Lyme from the get go...insurance paid for 1.5 years of pointless visits trying to prove it WASN'T lyme . Also how much is spent on these folks that are misdiagnosed with MS, ALS, GI issues, arthritis (I have heard of people having surgery for issues that end of being caused by Lyme), etc?

[philamom]

I guess my daughter would be a good example of how symptoms after lyme treatment are not due to "post Lyme syndrome" (non infectious symptoms) as Steere claims, but treatment failure- infection still present. My daughter cultured positive after treatment with Advanced Lab, proving she still has lyme. I was given a photo of the spirochetes cultured from her blood sample.

Edited June 6, 2013 by philamom

[EAMom]

Philamom,

 

Yup, really with the culture test they have the ability to settle this debate once and for all. Take a bunch of people with chronic lyme off abs for 2 mo, then culture. Do it in the winter when there are no ticks around so the naysayers can't say "they just got reinfected).

[philamom]

Philamom,

 

Yup, really with the culture test they have the ability to settle this debate once and for all. Take a bunch of people with chronic lyme off abs for 2 mo, then culture. Do it in the winter when there are no ticks around so the naysayers can't say "they just got reinfected).

Yes - dd was cultured during a winter month. It helps in that argument.