Wellness

[Moonchilde]

@Trinity11 said:

"Ford, I have found over the years when my insurance refuses to pay for something it usually means it has no proof that it will work. I wanted Repatha for cholesterol because it is not supposed to give muscle pain and it cost over a thousand a month. I have done research and it isn't nearly as effective as Lipitor and that's the real reason, insurance won't pay for it. Proven methods and clinicals on a particular treatment still play into it. It is a shame that your daughter doesn't want to get well with conventional medicine. She is choosing a path that could greatly influence her future but I understand as a mom myself, our kids do what they want to do whether we question it or not."

I agree that when insurance refuses to pay it's often because the procedure, treatment, medication or whatever has not been proven to be "largely valid/successful" by independent criteria.

I have an orthopedic condition (in "remission" now thanks to proper footwear) that can be, and was, extremely painful to the point of being effectively crippling. Two different orthopedists told me they (the medical specialty, not just them) would not do surgery for it (professional athletes have surgery for this but have every conceivable resource to go on, which the average person doesn't), and that there was "nothing" that could be done, EXCEPT - platelet-rich plasma injections. And - ta-da - insurance wouldn't pay for it.

After doing extensive reading, I realized the procedure had a 50% (or less) "success rate" and would require me (who lived alone) to be immobile for weeks, and in excruciating pain (with no pain meds allowed as they interfere with the healing process) for a week. My "share" of the cost (12 years ago) would be $1000. I said no. Not worth all that (despite an orthopedist and a fame-seeking podiatrist) eager to do it) for a 50% or less chance it might work. No wonder insurance doesn't pay for it, I thought.

The medical jury is still out, years later, as to whether it works and the possible negative effects. But it's used a lot on professional athletes, and with all the $$, care, follow-up, therapy, etc. they get on a daily basis, it probably does work in some cases, or they wouldn't still be doing it (though the procedure's reputation isn't any better today).

It's not paid for by insurance, but it works for some people. So while I didn't want to go for it, others do. I might have, if circumstances had been different. I understand grasping at straws with procedures that work, just not work for everyone.

[Trinity11]

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@LilacTree wrote:

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@Trinity11 wrote:

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@LilacTree wrote:

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@Trinity11 wrote:

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@LilacTree wrote:

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@Trinity11 wrote:

@LilacTree.......kind of bittersweet for you I suppose. In one aspect it's good that he is self-sufficient and is going to have his own apartment but I know you were looking forward to him being around and living with you.

Hopefully, he will grace you with lots of visits and you can see him frequently. There is nothing quite like having young people around us. I love when my children come to visit and when I see my grandson.

Good luck with everything.....

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@Trinity11

Nothing would have changed really, Trinity (except maybe he could have taken out the trash, LOL).  He works days and sleeps at night, so I wouldn't have been seeing that much of him anyway.  He wants to begin college in the fall, so I am just hoping he will be able to save enough money to make that possible.

Since my daughter sleeps all day and is awake all night, I am kinda living alone anyway. 

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There are many scholarships out there for a variety of colleges. My children went on a free ride and got excellent educations. They went on to graduate school and are very successful. There are also loan programs that will make it possible for him to attend school. If he is emacipated from his parents, there are a number of financial aid plans that he would probably be eligible for. College is so expensive that saving his money, although admirable, will probably leave him with a lot of debt. I hope he explores many options.

As far as your daughter, has her health improved with the infusions? Has she seen anyone for her depression? It cannot be easy for you having to witness her deteriorating health.

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@Trinity11

I guess I have to say it's complicated.  He already has a college loan that he is paying off and if you will forgive me, I will spare you the details.  Fact remains, he already has debt.  His plan (which I agree with) is to go to community college for two years, which is much less expensive, and then transfer to a university. 

Of my three girls who went to college, only one went directly from high school to college (University of Delaware).  The other two worked for two years first to save the money and then went on to Rutgers and Rowan (which was Glassboro at the time).  All three graduated with honors.

Unfortunately, I was a mere secretary at the time, making just enough to support us in a rental apartment.  I was fortunate that I was poor enough to get them all Pell Grants, which helped.  Their father was well off and living with his third wife in California.  He never contributed to anything.  All four of my girls paid for their own educations, bought their own cars, paid for their own weddings, etc. 

My sick daughter will be getting her third infusion this coming Tuesday, so it's too soon to see if this is going to work.  She has to pay cash, insurance will not cover it, and it is not cheap.  Yes, I worry about her constantly.

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Ford, I have found over the years when my insurance refuses to pay for something it usually means it has no proof that it will work. I wanted Repatha for cholesterol because it is not supposed to give muscle pain and it cost over a thousand a month. I have done research and it isn't nearly as effective as Lipitor and that's the real reason, insurance won't pay for it. Proven methods and clinicals on a particular treatment still play into it. It is a shame that your daughter doesn't want to get well with conventional medicine. She is choosing a path that could greatly influence her future but I understand as a mom myself, our kids do what they want to do whether we question it or not.

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@Trinity11

Trinity!  No.  She did try conventional medicine and was on antibiotics for several years, sometimes two different ones at the same time.  The doctors told her they had nothing else to offer her.  Most don't even believe chronic Lyme exists! 

This "new" doc is her "old" PCP.  He is trying this because he already knows none of the other ones work and he knows she's really sick.  There is only a less than even chance that this will make her feel better . . . nothing, so far, has been done to work on a cure.  It's similar to AIDS and other autoimmune diseases.  It can only be "treated" or "controlled."  And some are lucky enough to go into remission.  Those are the so-called "cures." However, the spirochetes are still there, they are just not active, as hers wasn't for decades.  Anything can set them off again.

Lyme can be cured in its very early stages (within three weeks to a month) by taking doxycycline, the antibiotic of choice.  Once one has not been diagnosed after that, it becomes chronic and can emerge decades later, as it has with my daughter.  At that point it is incurable.

At first, they weren't doing the right tests.  When she finally was tested with the right test, she showed positive for Lyme.  Unfortunately there is no cure for chronic Lyme. 

She is not being stubborn, she has tried everything.  She still tests positive for Lyme.  She does need to address the depression and I am so hopeful that she eventually will.  But a good psychiatrist or even psychologist is necessary for that, someone with experience with Lyme patients. 

A therapist such as the one I am now seeing has no knowledge of Lyme at all.  I asked her, and she said although she does see individuals with physical illnesses, she only treats the depression the illness causes, she does not attempt to treat the illness itself.  That was an honest answer. 

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It sounds like chronic Lyme disease isn't recognized and that's why insurance refuses to pay. I researched and the jury is out. Why not treat the symptoms she is experiencing  and let insurance pay for treatments that help relieve them...  I guess it's confusing to me that she suffers from deep depression and physicians don't just put a different diagnosis on her symptoms and treat them instead of telling her little can be done. Why not label it fibromyalgia and use meds to help it...she sounds a lot like someone with fibro..

[LilacTree]

@Trinity11

I totally agree with that Trinity.  In fact, the disability lawyer who handled her case to get her SSDI, and lost, refiled under Chronic Fatigue Syndrome.  It has been almost a year since she's heard anything from him.  He doesn't get paid unless she gets approved, so I imagine it's not a priority with him. 

And I do believe she also has fibromyalgia.  I also believe I have those two things as well.  Once you lose your immune system, you get everything that comes down the pike.  If I listed my symptoms, it would take two pages, single spaced.

My daughter has symptoms of both meningitis and encephalitis.  She is asking for a spinal tap because that would confirm or deny those two diseases.  I don't know if she can afford it if they deny it based upon all of her other negatives.  That would be thousands, which none of us have.

[LilacTree]

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@Zhills wrote:

@LilacTree There are lots of grants and programs for children who live on their own and want to go to college.  He needs to go to the school and check them out.  It is easier for a kid living on his own than it is for one living at home.

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@Zhills

I will tell my daughter that, thank you Zhills.  However, I'm wondering if he will be eligible because he is still paying off the student loan he already has.  But it's certainly worth a try.  Thank you.

[LilacTree]

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@Moonchilde wrote:

@Trinity11 said:

"Ford, I have found over the years when my insurance refuses to pay for something it usually means it has no proof that it will work. I wanted Repatha for cholesterol because it is not supposed to give muscle pain and it cost over a thousand a month. I have done research and it isn't nearly as effective as Lipitor and that's the real reason, insurance won't pay for it. Proven methods and clinicals on a particular treatment still play into it. It is a shame that your daughter doesn't want to get well with conventional medicine. She is choosing a path that could greatly influence her future but I understand as a mom myself, our kids do what they want to do whether we question it or not."

I agree that when insurance refuses to pay it's often because the procedure, treatment, medication or whatever has not been proven to be "largely valid/successful" by independent criteria.

I have an orthopedic condition (in "remission" now thanks to proper footwear) that can be, and was, extremely painful to the point of being effectively crippling. Two different orthopedists told me they (the medical specialty, not just them) would not do surgery for it (professional athletes have surgery for this but have every conceivable resource to go on, which the average person doesn't), and that there was "nothing" that could be done, EXCEPT - platelet-rich plasma injections. And - ta-da - insurance wouldn't pay for it.

After doing extensive reading, I realized the procedure had a 50% (or less) "success rate" and would require me (who lived alone) to be immobile for weeks, and in excruciating pain (with no pain meds allowed as they interfere with the healing process) for a week. My "share" of the cost (12 years ago) would be $1000. I said no. Not worth all that (despite an orthopedist and a fame-seeking podiatrist) eager to do it) for a 50% or less chance it might work. No wonder insurance doesn't pay for it, I thought.

The medical jury is still out, years later, as to whether it works and the possible negative effects. But it's used a lot on professional athletes, and with all the $$, care, follow-up, therapy, etc. they get on a daily basis, it probably does work in some cases, or they wouldn't still be doing it (though the procedure's reputation isn't any better today).

It's not paid for by insurance, but it works for some people. So while I didn't want to go for it, others do. I might have, if circumstances had been different. I understand grasping at straws with procedures that work, just not work for everyone.

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@Moonchilde

I guess it's a judgment call.  You can bet your portion would be far more than $1,000 these days.  And if they say 50%, it probably means 20%.  I'm glad your prosthesis or orthopedic footwear is helping you.  I would have made the same decision.

[Moonchilde]

Oh yes, @LilacTree, I'm sure it would be double or more that $1000 now :-(

I have Achilles tendinosis, which is a chronic mini-tearing and scarring of the Achilles tendon. I'm sure I got it from wearing those 'rocker bottom' shoes that were popular with Skechers and Alegria years ago (orthopedists agreed with me, and there have been lawsuits that can be googled). Having that issue in my left foot threw my body so out of mechanical whack when I walked that I developed severe plantar fasciitis in the other foot. I have only been able to get both issues under control with Vionics; I now have a closetful ;-)

I do understand investigating everything that might help an issue.

[Trinity11]

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@LilacTree wrote:

@Trinity11

I totally agree with that Trinity.  In fact, the disability lawyer who handled her case to get her SSDI, and lost, refiled under Chronic Fatigue Syndrome.  It has been almost a year since she's heard anything from him.  He doesn't get paid unless she gets approved, so I imagine it's not a priority with him. 

And I do believe she also has fibromyalgia.  I also believe I have those two things as well.  Once you lose your immune system, you get everything that comes down the pike.  If I listed my symptoms, it would take two pages, single spaced.

My daughter has symptoms of both meningitis and encephalitis.  She is asking for a spinal tap because that would confirm or deny those two diseases.  I don't know if she can afford it if they deny it based upon all of her other negatives.  That would be thousands, which none of us have.

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When she was hospitalized a few weeks back, I doubt any hospital would release a patient if there was a question of meningitis or encephalitis. Your daughter needs a physician who helps her deal with internet rumors and falsehoods. I hope she gets someone who can help her with her mind, body and spirit.

As far as the attorney, she needs to get a clear cut diagnosis so the lawyer can create a case that the judge will approve her for disability. As it stands chronic Lyme won't accomplish that.

[DianeJ2]

@LilacTreeSending you love&light after reading this...You are a loving mom&grandma and they are blessed to have you! I have chronic lyme&fibromyalgia, was diagnosed late...I recently did a  course of Vitamin D3,  50,000iu, 1x a week for 3 months, prescribed and bloodwork monitored by my doctor.  This gave me such a boost with mood, joint pain and fatigue...I was able to "jumpstart" myself out of a flare I was stuck in for a year.  I .just thought I would pass along that although it might not be eradicated, there is hope to manage lyme/fibro flares long term...finding the right regime physically&emotionally is tough, but hang in there ☺ 

[LilacTree]

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@Trinity11 wrote:

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@LilacTree wrote:

@Trinity11

I totally agree with that Trinity.  In fact, the disability lawyer who handled her case to get her SSDI, and lost, refiled under Chronic Fatigue Syndrome.  It has been almost a year since she's heard anything from him.  He doesn't get paid unless she gets approved, so I imagine it's not a priority with him. 

And I do believe she also has fibromyalgia.  I also believe I have those two things as well.  Once you lose your immune system, you get everything that comes down the pike.  If I listed my symptoms, it would take two pages, single spaced.

My daughter has symptoms of both meningitis and encephalitis.  She is asking for a spinal tap because that would confirm or deny those two diseases.  I don't know if she can afford it if they deny it based upon all of her other negatives.  That would be thousands, which none of us have.

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When she was hospitalized a few weeks back, I doubt any hospital would release a patient if there was a question of meningitis or encephalitis. Your daughter needs a physician who helps her deal with internet rumors and falsehoods. I hope she gets someone who can help her with her mind, body and spirit.

As far as the attorney, she needs to get a clear cut diagnosis so the lawyer can create a case that the judge will approve her for disability. As it stands chronic Lyme won't accomplish that.

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@Trinity11

I agree with your first paragraph.  I can't say anything about that to her because she gets very angry.  She's convinced she has meningitis for sure.  I am just mom getting old to her, she doesn't believe anything I say.  If I mention the ER visit she gets even madder because they wouldn't do a spinal tap.  They can't do a test like that unless ordered by a doctor.  She had an appointment with a neurologist last week which they cancelled because of the snow.  They said they would get in touch with her to set another date, but they have not done so to date.  Everywhere she turns she gets put down and that is making her more and more negative.  I don't know what to think, or do, anymore.

The attorney filed for chronic fatigue syndrome after she was turned down for chronic Lyme.  She said her records showed ample proof of CFS, but I never saw any of her paperwork, so I have no idea what her symptoms were (are).  I don't know if she has called the attorney or not for an update.  She rarely is open for discussion with me on anything. 

[LilacTree]

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@DianeJ2 wrote:

@LilacTreeSending you love&light after reading this...You are a loving mom&grandma and they are blessed to have you! I have chronic lyme&fibromyalgia, was diagnosed late...I recently did a  course of Vitamin D3,  50,000iu, 1x a week for 3 months, prescribed and bloodwork monitored by my doctor.  This gave me such a boost with mood, joint pain and fatigue...I was able to "jumpstart" myself out of a flare I was stuck in for a year.  I .just thought I would pass along that although it might not be eradicated, there is hope to manage lyme/fibro flares long term...finding the right regime physically&emotionally is tough, but hang in there ☺ 

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@DianeJ2

I will mention this to my daughter.  I take 2,000 iu of Vitamin D3 every day and have no idea if it's helping me or not.  I do not have Lyme, I have RA and other autoimmune diseases.

My daughter who has Lyme is getting IV treatments every week now with vitamins and supplements.  She may be getting Vitamin D, I'll have to ask her.

I am happy to hear you are doing so well !!