Topic: Misinformation about lyme that's not helpful
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
After seeing over and over that fellow Lyme patients are being told: never mention Lyme disease when applying for Social Security Disability...when I know that is a myth, I wondered what other myths have we been perpetuating and would like to clear up?
Another one I have heard: "don't mention Lyme to your insurance co or they will stop treatment"...ummm, why does my (top notch) LLMD write "dx Lyme disease or chronic neuro borreliosis" on my Rx's, home health order, orders for labs and medical procedures?
The insurance companies know my diagnosis. If the government wanted, they could know my diagnosis because I am on Medicare. The Social Security Administration knows my and my husband's diagnosis.
The private insurance co knows my husbands diagnosis.
When I was first diagnosed, I was so scared to let anyone know I had Lyme (because of the fearmongering that has been perpetuated), I didn't file insurance claims for out-of-network benefits. I now see how silly that was. My family needs every penny we can get in reimbursement.
No one has come to take away my kids or taken me away to some Lyme colony.
What other myths have you heard, but have found through personal experience are not accurate?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm glad it's working out for you in all phases.
But past experiences are not based on myth, but on sad realities - that we all hope will change but it's not changing everywhere yet.
It is good to get all the information first and then decide, based on one's own circumstances.
Many have lost insurance coverage, life insurance, jobs, and - yes - even custody of their children for limited time (for treating with on-going antibiotics).
My life insurance was cancelled.
If we know that then we can decide for ourselves, in our situation, how best to proceed.
This can also vary from state to state. In my state, mentioning lyme is an automatic dismissal from many doctors' offices and, most especially from emergency rooms.
I've had many experiences so I know this is no myth. I didn't believe others when they told me but I found out the hard way by being too open.
It's just important to know "the atmosphere" so that we can side step that with as much style and grace - and success - as possible.
It's good to know WHO we are talking to and what their views or policies are about lyme and if is safe to proceed or if we need to be a bit guarded.
Of course, it's great when we can be open. We just need to know who or what is swimming in the water before we jump in.
I'm glad to see in your case, there are no problems. That is very nice to hear, indeed.
Everyone should get to know their local and state lyme support groups for detailed suggestions about how to move forward.
It can make a huge difference from one state to the next.
So much depends on the state's medical board and how they've influenced state or regional insurances, doctors, etc. regarding lyme. -
[ 09-13-2012, 04:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I was actually awarded SS due to Lyme disease & depression in the state of Kentucky. Being a healthy functioning human being prior to lyme dx, all my doctors called it what it was early into my illness. Blessed, I know.
Yes, I focused on how it effected my daily life.
SS even called my naturopathic doc and asked her questions about me. Hiding from the lyme word doesn't help others get out from underneath their labels....CFS, fibro, MS, parkinson, etc.
I'm tired of hiding in the REAL world of lyme. I think many of the LLMDs are popping their heads out too. We must be heard.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Keebler: Yes, caution is needed in many instances.
I understand the cautious approach about parents seeking treatment for their children with Lyme.
Have parents who have received treatment for themselves, had their children removed from their home? If so, I did not know that and that is horrifying.
map: I'm tired of hiding too. We did nothing wrong.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lax mom,
The problems have been for the children's treatment, not that of their parents.
To my knowledge, it's never been about the parents' treatment but about the child or teen.
Some have been accused of Munchausen by proxy and either threatened with or actually lost custody of a minor child for time.
Some school officials turned in parents to social services when they saw a kid not doing well with treatment and reporting on-going antibiotics.
Yet, for those cases, there have also been instances of school districts rallying around parents and kids to help however they can. There are some fabulous heart-warming experiences, too.
Again, know the waters. Know who ALL the swimmers are. Know your state medical board stance on lyme. In my state, it's nearly declared "illegal" to discuss lyme, the medical board is that much against it.
Just last week the IDSA has taken new interest in a doctor who treats with on-going treatment for "chronic lyme" - something the IDSA insists does not exist.
By the same author of the lyme book "Cure Unknown" this details what some have faced during their kids' lyme treatment:
Call them the Munchausen mothers. A growing number of women stand accused of deliberately sickening their children for attention from doctors.
In an era of patient advocacy and hard-charging moms, there's no end in sight to this hotly contested diagnosis.
By Pamela Weintraub, published on September
Scroll down to see text.
-------------------------
I think the Weintraub article expands on the basics but if you want, you can search past threads here at LymeNet, search in subject line just for: Munchausen
posted
I really appreciate this post lax mom. You make so many salient points. I am happy as well that you pointed out that fearmongering can lead to inaction, which will never help anyone with this illness. Caution is one thing and may be needed at times(Keebler makes a fair point with that), but passivity to the point of paralysis is another.
I have lyme disease and a multitude of coinfections and my insurance knows it and I am not being targeted by the IDSA or -as you put it so well-living isolated away in some "Lyme colony." I am glad to see that I am not alone in my sentiments. Jess.
Posts: 651 | From ct | Registered: Sep 2011
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posted
I turned in all of my out of network claims. I never had any trouble with treatment being paid for. No trouble with meds, but I never had IV either.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think on a recent post someone lost their life insuracne policy due to the company finding out they had lyme
i dont deny it is lyme with my llmd but find it simpler with primary to call it what ever she wants to
after this much time i am tired of fighting
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
If I had a child to treat.....nobody would get in my way. I'd fight all the way to the top if it was in our best interest.
Of course, the world wouldn't know my and the LLMDs treatment. That is private medical info.
I remember a member on here that got herself in trouble with trying to treat her children. I think about her often and hope that everything worked out for them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Keeping my diagnosis from my insurance, dr's, and friends/family was the worst mistake I've ever made. Lost lots of money in insurance reimbursement, confused dr.s that actually wanted to help, and lost my job(later found out that they would have done anything to accomadate my situation).
I can understand discretion when it comes to your children. I don't understand it for adults. Since lyme is now epidemic, it's very counterproductive and destructive IMO.
I also live in a very unaccommodating state when it comes to lyme.
posted
The insurance companies can't have it both ways. They can't deny treatment because chronic lyme doesn't exist & then sister companies drop or deny life insurance because of said diagnoses. I would take that straight to the attorney genernal of your state & to insurance commission if your state has one. Btw, I know MD HAS granted disability based on lyme.... My 2 cents....
Nvrgiveup
Bow
Posts: 21 | From Maryland | Registered: Feb 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So much depends on the state in which one lives.
It's helpful for everyone to be aware and educated about what it's been like for others in your state - regarding all matters of care with doctors, insurance - and with schools, etc.
Schools can differ even within the same district with how well they support (or don't) the needs of kids with lyme.
LOCAL and STATE LYME SUPPORT GROUPS are extremely valuable in this regard.
In my state, lyme nearly has "illegal" status. No doctor, no agency is allowed to entertain the idea chronic lyme. There is no quicker way for a MD to loose their license in my state than to treat "chronic" lyme.
The state insurance commission here - and the medical college in the state - all consult with the state ID doctors' group on the matter of lyme - and their "major mouthpiece" is a former IDSA president).
But all this can vary from state to state.
It's best to get acquainted with leaders and members of local and state lyme support groups. They can help regarding how it works in your state - and ways to work with or around that, if or when at all possible.
The local groups can also keep you posted on any new instances of IDSA pressure on area doctors, etc.
Those in the local and state groups have been through all this - be sure to connect with them in advance of decision so that they can be the most effective use of resources, time and energy.
It's also good to be aware of certain biases or labels - and know which doctors to avoid who think like this. Not saying it's always like this but it can be a huge help to be acquainted with this information BEFORE making decisions:
Topic: "DIFFICULT PATIENT" & HOW DOCTORS THINK (and how to work towards good communication within a challenging system) -
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