Well, as some of you know, my new husband, who is in the Air Force, and I have been assigned to move to Louisiana in a few months. We had a meeting last week with military personnel to challenge the move due to a need for an LLMD for my care.
It was undeniably the WORST experience ever...far worse than we imagined. They brought in an Air Force Infectious Disease doctor as the "expert." This woman was the most condescending individual I have ever seen.
She, of course, said that she sides with the infectious disease community regarding the treatement of Lyme and lectured me on the dangers of long-term antibiotic use.
She did not agree with my doctor's treatment or diagnosis. She does not deny that I may have had Lyme sometime in my past (and Bartonella, too), but says that abx are not the way to treat it.
Guess what she said is the treatment for my Lyme? Anti-depressants (Celexa, Paxil, etc)! Has anyone ever heard of that?
Anyway, I was glad that my husband was there to witness the blatant arrogance and disrespect that this woman had. He couldn't believe the woman could make such statements without even examining me or reading my medical history.
She had her opinion on the Lyme debate and came in without any intention of budging or listening.
She said that my doctor's insistence on finding an LLMD in Louisiana for me is not likely. She basically was saying that my doctor is a quack and that the military would not be referring me to such a doctor. She did not feel that Louisiana had a lot of folks that knew much about Lyme there either.
Sooooooo...my husband is livid and now we are facing a move where my health care will not be covered as it is here in Virginia. I didn't figure the military would be open minded about this, but neither of us thought they would be so rude and obstinate!
Not sure what we are going to do, but I do know that I am going downhill quickly and I really feel I am going to die. It is all very scary.
Thank you all for your suggestions. I used all of the information you gave me, but this woman just gave us a funny look and told us that what we were saying was simply untrue.
Posted by humanbeing (Member # 8572) on :
So sorry to hear you being treated this way. Ignorance is mean when you are fighting for your life.
I would opt to travel to the LLMD in a nearby state and pay out of pocket if necessary. If you go visit the doc a few times a year, they can renew meds over the phone.
Many lyme sufferers must resort to this to stay alive since there are so few llmds.
I am so sad, will pray for you today.
Posted by seibertneurolyme (Member # 6416) on :
VaChick,
So sorry for the outcome of your hearing.
Yes, probably 50% of the chronic Lyme patients have been offered psych drugs at one time or another and told they were not physically sick.
13 out of 14 neurologists told hubby that his Parkinsonian tremors/myoclonus/seizure-like episodes were simply a result of anxiety/depression. Some of them still said this even with a positive PCR and no prior antibiotic treatment at that point.
My advice is find an LLMD and pay out of pocket -- and if you are really committed then a lawsuit might be in order. Don't know if there is any appeal process you can go thru or not.
Your health has to be your priority. Do whatever it takes to continue your treatment.
This is just my opinion and not medical advice.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
I'm very sorry this happened to you! I hear the desperation all the way over here.
Keep your head up. Those people are just ignorant. Nothing you can do about it.
There's an LLMD in LA and one in MO. YOu can do it! Don't give up!
Posted by alliebridge (Member # 9103) on :
So sorry to hear of your terrible experience.
It's one thing to read about the ignorance associated with lyme disease, and it's another to experience it first hand--slapped in the face with it. Ugh!
Sending out some hugs to you! Hang in there! Posted by lou (Member # 81) on :
Several years ago the LDA and others met with the military brass in D.C. and it appeared they had gotten the message. Apparently they forgot to pass it on.
Somewhere this was written up, maybe in previous issue of Lyme Times. If interested, their archives are available on the internet at their website.
Posted by Soleilpie (Member # 8481) on :
Vachick, Hi there. I'm sorry you're going through what you're going through. My husband just retired from the military a year ago. I seriously doubt there are many, if any, military physicians who are familiar with chronic Lyme disease, let alone the use of long term antibiotics for its treatment. I assume you have Tricare and under Tricare Prime there is the Point-of-Service option that you should be able to take advantage of, but only if you have Tricare Prime. From what I understand, you have the option of seeing a physician w/out a referral. When you do this, you will be using the point of service option. I believe this option will pay 50% of allowable charges. Now I don't know if Tricare at some point can tell you that they will not cover an LLMD past a certain point, especially if they feel the treatment is unnecessary, but you have this option. I have cut & paste from the Tricare website a description of this option for you. I hope this helps you some. Christina
TRICARE Prime Point-of-Service Option
Point-of-Service (POS) An option that allows a TRICARE Prime beneficiary to obtain medically necessary services--inside or outside the network--from someone other than his or her primary care manager, without first obtaining a referral or authorization. Utilizing the POS option results in a deductible and greater out-of-pocket expenses for the beneficiary.
The TRICARE Prime POS option applies to all non-referred, nonemergency services received by TRICARE Prime and TPRADFM beneficiaries. The POS deductible applies only to outpatient services, and the cost-share applies to both inpatient and outpatient services. TRICARE reimbursement is limited to 50 percent of the TRICARE allowable charge. The POS option also applies to prescription drugs. If you take your prescription into a non-network pharmacy, you will pay more. POS cost-sharing and deductible amounts do not apply if you have OHI. The POS deductibles and cost-shares are as follows (for all beneficiary categories):
Deductibles: $300 per individual/$600 per family Cost-share: 50 percent of the TRICARE allowable charge
TRICARE Prime POS Option and the Catastrophic Cap For unauthorized care, the TRICARE Prime POS deductible is $300 per person and $600 per family. The beneficiary cost-share is 50 percent of the allowable charges after the deductible.
The TRICARE Prime beneficiary's out-of-pocket cost while utilizing POS is accrued against the catastrophic cap. However, there is no cap on POS out-of-pocket expenses. The beneficiary cost-share will remain at 50 percent of the TRICARE allowable charge even after the catastrophic cap has been reached.
Posted by Andie333 (Member # 7370) on :
I'm so sorry to hear about your experience and am hoping you'll be able to find an insurance alternative that allows you to seek an out-of-network doc -- even if the reimbursement is less than before.
I also second the vote for seeing someone out of state, if necessary and covering those expenses yourself. I actually do that, and while it's been expensive, for me, it's been worth it.
Andie
Posted by docjen (Member # 7510) on :
So sorry about this. I received my first MIS-diagnosis in Louisiana. I moved there from Wisconsin a couple of weeks after my tick bite, and started having symptoms. I went to my doc at the time (at a teaching hospital) who said regardless of the tick bite, and the appearance of a bullseye rash shortly after, the ELISA test came back negative, so I must not have lyme!!! So he told me that I probably had a problem with anxiety and needed to find some more friends with whom I could talk about my problems. So...yes...I can understand.
Good luck to you.
Posted by vachick (Member # 8353) on :
Thank you all for your support and suggestions. It has been harder on my husband than on me, believe it or not. I am used to doctors telling me that I am a hypochondriac, nothing is wrong with me, I need a psychiatrist, I am stressed, etc., but he sees how sick I am versus when he first met me and he just can't believe that doctors can be so closed minded and stubborn.
So, we have to consider the out-of-network options. Christina, we currently have TriCare Prime...I think it is TriCars Standard where you can see civilian doctors without a referral. I will get confirmation of that in a few weeks. Sounds like you have experience with the system!
Thank you all for your thoughts and good wishes. It is amazing that we all have to fight so hard for our health. Some days I feel like I am losing the battle, but my husband told me that he will carry me into every doctor's office until someone listens and helps us! I am lucky to have him. Posted by Nal (Member # 6801) on :
My hubby retired from the AF about 2 years ago. I still have their insurance. They are the worst!!!!!!
They will not budge on anything (and yes, I have fought them). They strictly go on what their ID experts say and that is that!!
Im so sorry you got treated that way--totally unfair I know.
Nancy
Posted by davidx (Member # 8326) on :
Sorry to hear about this experience you had. A doctor having an opinion is one thing but a doctor having a condescending attitude is just uncalled for. I think being a doctor is a noble profession but how to deal with patients should be a mandatory class in med school.
Is there any to pursue the matter in another route or was this the only chance you had to challenge the move?
By the way, it's great that you have such a supporting husband!
-David
Posted by lucy96734 (Member # 8372) on :
I am so sorry you are dealing with this. It is just amazing. I've been there with an ID and it isn't fun, how crazy is it that so many of us have?
I hope that you are able to find a way to get your care covered. I live in Hawaii where they know nothing about Lyme and see a LLMD in CA. When I started seeing him in Dec he had 2 patients in Hawaii, he now has 9. I know 4 other people that see another LLMD in CA. It is coming here slowly despite the strict animal regulations and the Drs say it isn't.
I sure hope you find a positive resolution. I am glad your husband is so supportive.
Posted by bettyg (Member # 6147) on :
VA, my sympathies to you also on this terrible situation.
One of our other members wrote about an article or book. Someone wrote a book on lyme disease THEY GOT WHILE SERVING USA. My lyme mind doesn't remember anything else.
You might try doing a search and trying to contact the author about it, and any suggestions SHE has? Do remember it was a woman; that's all.
My thoughts & prayers to you; yes, I agree with others ... go to another state if need be.
GOD BLESS YOU LL HUSBAND for the 24/7 support he is giving you! Give him an extra hug/kiss from us lymies ok! Posted by Ann-OH (Member # 2020) on :
Sorry you had to go through that. Have you contacted the Military Lyme Support Group?
I think there is someone here who has a doctor in Louisana who can treat Lyme disease.
Hope you get some help. Ann-OH
Posted by vachick (Member # 8353) on :
You are all so wonderfully caring and supportive. Sometimes I don't know what I would do if I didn't have this place to turn to with you fine folks here.
My wonderful husband and I just have to figure out what the plan will be and start saving financially. I just started seeing a primary care doctor at Bethesda who spent an hour listening to my symptoms and seems willing to put together a plan for my health care. We are hoping that if we can get him on our side that he can make recommendations to the place we are moving to.
I will definitely contact the military Lyme support group. I know there are some folks even around here in the military who have Lyme. It will be interesting to see what experiences they have had with the docs, diagnosis process, treatment, etc.
Posted by Lymetoo (Member # 743) on :
I also applaud your husband! He's a keeper!
check your PM
Posted by dmc (Member # 5102) on :
So sorry you had to go through with the "attitude". I had the same type of thing happen with a mis-diagnosis (not lyme related) and was shuffled around way back when I was in the milatary.
Finally went to my Senator, gave him all my records, and my notes regarding each different doctors' visits. Finally resolved the issue.Took my Senator a week while I struggled for a year to get help. Don't bother with Congressmen, seems the miltary isn't as responsive...my Cogressperson was a waste of time.
The doctor, by the way, immediately "transfered". She too was a condensing you-know-what, and sha was head of the Medical Clinic I had the most dealings with.
Posted by PinchotGail (Member # 5066) on :
Vachick, What about the 2 Standards of Care??? ILADS website This is afterall your choice in treatment. She doesn't get to decide which method the patient chooses and there is more than one way to treat.
Do you get a chance to submit medical evidence to support the evidence of chronic lyme and benefits of treating with long term antibiotics?.......I hope they allowed you the right, they should have in my opinion.
I go along with what DMC said....I used to work for the federal govt so I understand the politics and the size of the egos involved. If it were me, I'd call my favorite Senator as well. There is after all a bill in both the House and Senate right now and hopefully your Sen. is behind it?
Good Luck and keep us posted!!
Gail Posted by AP (Member # 8430) on :
I'm so sorry to hear that the military has screwed over yet another Lymie...
I worked for the Navy when I contracted Lyme, in fact, I was bit in the Seychelle Islands, off the eastern coast of Africa. This wonderful land of ours has stepped up to the plate, and pays for healthcare, however, I am still waiting for my backpay from the thousands of hours I have missed. In all, I've paid (it's cost me more to work for the Navy, than they paid me, and a Civil Servant's pay is pretty high) to support our troops, and have a lifelong disease to boot. Sure hope they appreciate it.
Words can not explain how angry I am about the way we take care of our own, and am looking in to relocating to a whole different country once the system kicks me out on the other side.
The best advice I have is to keep your head up, but not your hopes. They just don't care, and there's no way we can get them to. (Goodness that's a horrible thing to say, I feel like jumping off a cliff that's so depressing - unfortunately, there aren't any cliffs, so I'm going to have to keep trying to fight the system.)
Posted by MagicAcorn (Member # 8786) on :
I can understand them challenging the move, but to refuse to help you find proper care after the transfer. No, that is just wrong.
Have you tried going over everyone's head? Like maybe General Keyes who is stationed at Langley? Just a thought since it seems you and the hubba have made enough waves already why not go all the way.
Maybe a nice letter explaining your dilema would get some response. He probably doesn't get requests like this often and just maybe might pick up the phone on your behalf. The worst that could happen is he throws your letter in the trash, but he might just come to your aid.
If this doctor was especially rude like you have described, and refuses to help you get needed care, how can the Air force expect your husband to give the best he has? His thoughts will be constantly on his sick wife's needs not being met by the very country he has volunteered to defend.
This is just my opinion and not being in the military I do not know if it is sage advice. But some times when I've appealed to the higher ups I've gotten help.
I am so sorry that you were treated this way. I wish you and your husband the best of luck with the move.
Acorn
Posted by karatelady (Member # 7854) on :
My step sister lives in TN and she went to the VA doc feeling horrible - body aches, pain all over, many lyme symptoms.
She lives on top of a mountain and there are ticks everywhere up there in the woods.
She asked the VA doc if he would test her for lyme. He laughed at her and said that lyme was only in the Northeast!!!
Sandy
Posted by sofy (Member # 5721) on :
Forgive me if someone has already posted this but Im unable to read all the replies.
I had Tricare Standard befor they declared me disabled and put me on medicare. I had a private insurance policy to pay what the Standard didnt pay and they paid for my "no insurance" lyme doc.
The Tricare Standard choice is the only one that give you more control but of course you have to pay more for that control. Im so glad I made that choice cuz I sure the heck needed it when I had all those lab tests, MRI, brain scans etc.
Befor I went to see him I called Tricare and asked if his name was on the list and it was. You have to call, there is no other way to find out. He opted out of medicare but was on the list for Tricare reimbursements.
I always had to pay the bill in cash and then submit the bill to Tricare for reimbursement. I dont know if active duty have a private policy available to them to pay the other 25% but you could check.
Even if you have to travel quite a distance knowing you will at least get back a part of the fee helps.
I can only hope this move is for a "good reason" that you are unable to see right now. I wish you better health.
Posted by Nal (Member # 6801) on :
I did send you a PM. I hope you got it. Im gonna fight my denial as well.
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