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I think I may give up


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I just want to clarify something - LLMDs may not take insurance, but most give you the form you need so you can submit your own insurance claim and get reimbursed. This is exactly what Dr L does, exactly what Igenex does. So you may not get reimbursed 100%, but it's also possible you would get reimbursed for a substantial amount. The difference is that you pay out of pocket up front, get reimbursed on the back end. So the phrase "doesn't accept insurance" is a little misleading and is not limited to LLMDs.

 

That said, you've said repeatedly that your issues with pursuing lyme run much deeper than money. For reasons I cannot fathom, given your DDs results, it is off limits in your mind. That's your prerogative. Lots of people have thoughtfully considered it and decided it's not the path for them. I only post so that anyone else who wonders about LLMDs doesn't get it in their head that it's too expensive to pursue. If anything, we've spent less money on lyme treatment that we did on Pandas. Not trying to add fuel to this fire. Only trying to prevent misunderstanding on a money issue.

 

FWIW - we did not suffer from one tic and OCD. Ours was very TS based - vocals and motor tics. Not subtle things. Huge tics that caused my then 6 yo to revert to a sippy cup because the jerks in his hand would send milk flying across the room if it was poured into an open glass. Body jerks that forced the teacher to move him to a separate desk because other kids couldn't read or write with him shaking the table so much. I understand your focus on your own situation. But in that focus, I think you sometimes fail to realize that very few of us would consider our journeys, our high-stakes decisions, as "clear cut". We are all case-managers, like it or not. We all do soul searching, we all change doctors when it's time to change course, we all pray we're not making mistakes that will do more harm than good. Sometimes, we don't get lucky. The kids do end up paying for the risks we take. But some kids also pay the price for driving with their moms to the store and getting hit by careless driver. I think what has people upset is not that you feel this way, but that you seem to feel that none of us have also felt this way. Yet we do take those risks, we do drive our kids to the store.

 

I know you've made an appt with an immunologist in the hopes of more testing. But I think what many are saying is that it's treatment that's lacking more than testing. What will you do with the results of tests you hope the immunologist will run? It is time to treat your daughter, if you feel it's infection based, not test her.

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LLM--we have $6000 in-network deductible, and $12,000 out of network. LLMD's are out - of-network, so no repayment for us.

 

Quoting "I think what has people upset is not that you feel this way, but that you seem to feel that none of us have also felt this way"---THIS IS NOT TRUE!!! I suppose I can understand how you all can feel that way, but I DO KNOW that WE ALL FEEL THAT WAY! Or some of us, anyway. there are plenty who KNOW beyond a shadow of a doubt their kid has pandas....and they are lucky, in a twisted sort of way. I am a bit offended myself at this point for those who have taken my words and twisted them into something they are NOT. You have attacked my character at this point, you don't know HOW I feel about all of you and what you've been through.

 

I am caught in the mess of trying to explain why I have NOT done some things other's have, because those who have suggested things, and I haven't just done them, are offended. AGAIN, everyone on here is a parent. Period. And while I do believe many of us know ions more than most docs, I can't think for a minute that some of the specialists out there don't know more than us. So I've followed ours. And now I'm regretting not doing things different. When I posted this topic, it was based on the realization that I think I really screwed up by NOT doing more, NOT ignoring our specialist, etc....and too much time has gone by.

 

I know I ask the same questions over and over...I get overloaded and can't keep stuff straight anymore, and it gets lost in my mush of a brain, so I ask again. I also ask, because it seems doctors change their thoughts on things too.....

 

Treat, don't test??? You are one of the people who's test (the c3d, etc...) I have asked for numerous times. I don't have the luxury of having some of these questions answered prior to treating. So I want the answers before I treat. They must be worth something if people are posting left and right about testing for them. Dr. B runs tests galore. We have had minimal tests run. Will they show us anything? I don't know. Our immune panel was reviewed by a neurologist. I want it run by an immunologist, and I can't get to dr. b right now. And while I appreciate your firm hand in telling me to treat...with all due respect, I AM treating her. She is on the abx that our pandas specialist put her on, and I can't get ANY OTHER DOCTOR to treat her with anything else!

 

 

 

 

I just want to clarify something - LLMDs may not take insurance, but most give you the form you need so you can submit your own insurance claim and get reimbursed. This is exactly what Dr L does, exactly what Igenex does. So you may not get reimbursed 100%, but it's also possible you would get reimbursed for a substantial amount. The difference is that you pay out of pocket up front, get reimbursed on the back end. So the phrase "doesn't accept insurance" is a little misleading and is not limited to LLMDs.

 

That said, you've said repeatedly that your issues with pursuing lyme run much deeper than money. For reasons I cannot fathom, given your DDs results, it is off limits in your mind. That's your prerogative. Lots of people have thoughtfully considered it and decided it's not the path for them. I only post so that anyone else who wonders about LLMDs doesn't get it in their head that it's too expensive to pursue. If anything, we've spent less money on lyme treatment that we did on Pandas. Not trying to add fuel to this fire. Only trying to prevent misunderstanding on a money issue.

 

FWIW - we did not suffer from one tic and OCD. Ours was very TS based - vocals and motor tics. Not subtle things. Huge tics that caused my then 6 yo to revert to a sippy cup because the jerks in his hand would send milk flying across the room if it was poured into an open glass. Body jerks that forced the teacher to move him to a separate desk because other kids couldn't read or write with him shaking the table so much. I understand your focus on your own situation. But in that focus, I think you sometimes fail to realize that very few of us would consider our journeys, our high-stakes decisions, as "clear cut". We are all case-managers, like it or not. We all do soul searching, we all change doctors when it's time to change course, we all pray we're not making mistakes that will do more harm than good. Sometimes, we don't get lucky. The kids do end up paying for the risks we take. But some kids also pay the price for driving with their moms to the store and getting hit by careless driver. I think what has people upset is not that you feel this way, but that you seem to feel that none of us have also felt this way. Yet we do take those risks, we do drive our kids to the store.

 

I know you've made an appt with an immunologist in the hopes of more testing. But I think what many are saying is that it's treatment that's lacking more than testing. What will you do with the results of tests you hope the immunologist will run? It is time to treat your daughter, if you feel it's infection based, not test her.

Edited by eljomom
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No worries LLM. Truly, we are all momma bears here, that's all. A bunch of different species of bears, but momma bears, nonetheless.

 

 

I apologize. I did not mean to sound like I was attacking your character and I should not have assumed I knew how you felt. I'm sincerely and honestly sorry for adding to your distress.

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Not to make light of any of the truly experienced and passionate thoughts, opinions and ideas here, but this exchange reminds me of some line I used to hear bandied about a lot in the 1980s: "Girls, girls! You're BOTH pretty!" :P

 

We all express frustration and confusion differently, we all have slightly different needs of friends and fellow travelers, we all react to stress and pressures differently, and we all feel very passionately about certain things when it comes to our kids.

 

But please, please, please . . . let's not go at each other, no matter how untenable, disappointing or frustrating we may find someone else's position. You might intend to be coaching and incentivizing, but it might not feel that way on the other end of the discussion. :(

 

http://www.google.com/imgres?imgurl=http://icanhascheezburger.files.wordpress.com/2009/06/funny-pictures-bunny-is-sad.jpg&imgrefurl=http://icanhascheezburger.com/2007/01/11/you-make-bunny-cry/&h=447&w=500&sz=38&tbnid=oqv0GQ_I1yuPUM:&tbnh=90&tbnw=101&prev=/search%3Fq%3Dyou%2Bmake%2Bbunny%2Bcry%26tbm%3Disch%26tbo%3Du&zoom=1&q=you+make+bunny+cry&docid=m2X-Omvc_1jw2M&hl=en&sa=X&ei=7seDTq3EI6mssQLlndCZDw&sqi=2&ved=0CDEQ9QEwAg&dur=1665

 

Thanks for letting me voice MY feelings! ;)

Edited by MomWithOCDSon
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eljmom,

 

While I've been here for less than a week, and don't have much to offer, other than a sympathetic ear & positive thoughts, I get what you're saying, and I more than understand that every situation, and unfortunate journey down this road is unique. There's a lot of information, and complicated scenarios. And, a LOT of diametrically opposed ideology, and opinions... and advice! It's a lot to take in. And, we try to absorb it in the shortest amount of time possible. If there were any simple answers, or even simplistic paths, there wouldn't be a need for a "here", save for moral support, which we can all do with. This condition is frought with complications-- due, in large part, to unknown, and uncontrollable variables. And, our personal circumstances (which are never shared in enough detail to give a complete picture)conspire to complicate things even more. Each of us knows, intimately, what factors are at play with our stricken children, in our homes/families, in the medical community that we ultimately encounter, and choose to or are restricted (for various reasons) to working with.

 

I guess what I'm trying to say is that I understand. I understand why you feel paralyzed. I understand why you're frustrated. And, I understand that this screen between us (and privacy, anonymity, and probably the miles) prevents me from seeing all of the details and factors that makes your situation different from mine. I've got a very bright, high achieving, happy-go-lucky little boy, who went to take a pre-bedtime shower and... POOF! Severe OCD. Just like that. A week is not nearly enough time to stop feeling shocked, stunned, frozen... you name it. But in the days since I found this forum, both my level of knowledge and understanding have grown, but in proportion to my 'overwhelmedness'. I've shared a LOT, but not everything (nobody does... not even possible). I've been more focused on "What to do to help him... what next" than giving updates on what I'm thinking, what I'm planning, who I've talked to... what's been done. While every single shred of advice, from every single member (here in the open forum & via PM), has been poured over, valued (apprecated more than I can express), considered, and stored, I'd be lying if I said that I was going in every direction tossed at me. Ultimately, it's me and my son... and the decisions are mine to make (or screw up, heaven forbid). I know what *else* is going on, and what other factors have to be accounted for, what our resources are, and ultimately, what I believe, or know to be right. Still, realistically, my fervent beliefs won't necessarily bend, overnight, medical practitioners to my will. Not for lack of trying, though! Non-supportive, or non-believing family members may be even tougher. I've made some strides this week, even in my state of shock, but there's still much to be done, and I envision many battles ahead, unless my son is one of the "lucky" ones who have spontaneous and permanent recoveries from antibiotics alone, never having to pursue the other prospective treatments. Gosh, I hope he is!

 

But I see how this misunderstood and mistreated condition(s) can put maximum strain on your ability to cope, your family, your finances, etc... This community is clearly a wonderful, and supportive one. So, take what you need, and leave what you don't. You know, better than anyone, what that is. No apologies are necessary. It's all that can be reasonably expected of anyone. It's what I did, and will continue to do. And that doesn't, in any way, diminish my sincere appreciation to every contributor, and every piece of advice-- even the ones that were unfeasible, or unrealistic (for my situation). They can't have known, so I take them in the spirit in which they're intended.

 

I don't think you've lost any friends here. But, I know that you've gained one. :)

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Thank you! You eloquently expressed what I really was feeling in my heart 100%....I guess mine is just murked up with the emotional and mental exhaustion of the whole thing, sprinkled with some guilt...but thanks for what you wrote...it gave me peace.

 

eljmom,

 

While I've been here for less than a week, and don't have much to offer, other than a sympathetic ear & positive thoughts, I get what you're saying, and I more than understand that every situation, and unfortunate journey down this road is unique. There's a lot of information, and complicated scenarios. And, a LOT of diametrically opposed ideology, and opinions... and advice! It's a lot to take in. And, we try to absorb it in the shortest amount of time possible. If there were any simple answers, or even simplistic paths, there wouldn't be a need for a "here", save for moral support, which we can all do with. This condition is frought with complications-- due, in large part, to unknown, and uncontrollable variables. And, our personal circumstances (which are never shared in enough detail to give a complete picture)conspire to complicate things even more. Each of us knows, intimately, what factors are at play with our stricken children, in our homes/families, in the medical community that we ultimately encounter, and choose to or are restricted (for various reasons) to working with.

 

I guess what I'm trying to say is that I understand. I understand why you feel paralyzed. I understand why you're frustrated. And, I understand that this screen between us (and privacy, anonymity, and probably the miles) prevents me from seeing all of the details and factors that makes your situation different from mine. I've got a very bright, high achieving, happy-go-lucky little boy, who went to take a pre-bedtime shower and... POOF! Severe OCD. Just like that. A week is not nearly enough time to stop feeling shocked, stunned, frozen... you name it. But in the days since I found this forum, both my level of knowledge and understanding have grown, but in proportion to my 'overwhelmedness'. I've shared a LOT, but not everything (nobody does... not even possible). I've been more focused on "What to do to help him... what next" than giving updates on what I'm thinking, what I'm planning, who I've talked to... what's been done. While every single shred of advice, from every single member (here in the open forum & via PM), has been poured over, valued (apprecated more than I can express), considered, and stored, I'd be lying if I said that I was going in every direction tossed at me. Ultimately, it's me and my son... and the decisions are mine to make (or screw up, heaven forbid). I know what *else* is going on, and what other factors have to be accounted for, what our resources are, and ultimately, what I believe, or know to be right. Still, realistically, my fervent beliefs won't necessarily bend, overnight, medical practitioners to my will. Not for lack of trying, though! Non-supportive, or non-believing family members may be even tougher. I've made some strides this week, even in my state of shock, but there's still much to be done, and I envision many battles ahead, unless my son is one of the "lucky" ones who have spontaneous and permanent recoveries from antibiotics alone, never having to pursue the other prospective treatments. Gosh, I hope he is!

 

But I see how this misunderstood and mistreated condition(s) can put maximum strain on your ability to cope, your family, your finances, etc... This community is clearly a wonderful, and supportive one. So, take what you need, and leave what you don't. You know, better than anyone, what that is. No apologies are necessary. It's all that can be reasonably expected of anyone. It's what I did, and will continue to do. And that doesn't, in any way, diminish my sincere appreciation to every contributor, and every piece of advice-- even the ones that were unfeasible, or unrealistic (for my situation). They can't have known, so I take them in the spirit in which they're intended.

 

I don't think you've lost any friends here. But, I know that you've gained one. :)

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Not to make light of any of the truly experienced and passionate thoughts, opinions and ideas here, but this exchange reminds me of some line I used to hear bandied about a lot in the 1980s: "Girls, girls! You're BOTH pretty!" :P

 

We all express frustration and confusion differently, we all have slightly different needs of friends and fellow travelers, we all react to stress and pressures differently, and we all feel very passionately about certain things when it comes to our kids.

 

But please, please, please . . . let's not go at each other, no matter how untenable, disappointing or frustrating we may find someone else's position. You might intend to be coaching and incentivizing, but it might not feel that way on the other end of the discussion. :(

 

http://www.google.com/imgres?imgurl=http://icanhascheezburger.files.wordpress.com/2009/06/funny-pictures-bunny-is-sad.jpg&imgrefurl=http://icanhascheezburger.com/2007/01/11/you-make-bunny-cry/&h=447&w=500&sz=38&tbnid=oqv0GQ_I1yuPUM:&tbnh=90&tbnw=101&prev=/search%3Fq%3Dyou%2Bmake%2Bbunny%2Bcry%26tbm%3Disch%26tbo%3Du&zoom=1&q=you+make+bunny+cry&docid=m2X-Omvc_1jw2M&hl=en&sa=X&ei=7seDTq3EI6mssQLlndCZDw&sqi=2&ved=0CDEQ9QEwAg&dur=1665

 

Thanks for letting me voice MY feelings! ;)

 

 

Oh my gosh Nancy. Could you have found a cuter, more convicting picture? :(

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An LLMD will do Igenex testing, and will do a lot with abx. That might be a good choice for you.

 

Hi Eljomom,

 

Regarding the above, I just wanted to clarify that a good LLMD will do a lot more than Igenex testing and antibiotics. They will also test for chronic viruses, mycoplasma, staph, strep, and other infections depending on the symptoms your child presents with. They will look at vitamin and mineral status. They will focus on healing the gut, if needed. They will look for allergies, immune deficiency, heavy metal toxicity, KPU, mold exposure, biofilms and other issues that are commonly involved when a child has neuropsychiatric issues. Again, all testing based on symptoms and what the clinical picture and history show. We have two LLMDs (one for me, one for my son), and they will look at all those things and more. My son's only treats Lyme patients, but mine will treat a patient for whatever is affecting their health, not just Lyme. He uses abx, herbals, vitamins, detox, homeopathic remedies, and more. If you do go the route of an LLMD, I think that’s the type you should look for – someone very experienced with a large “toolbox.”

 

I do understand that your situation is a little different than many here, in that you had no “sudden onset” and your daughter is happy much of the time. This does affect decision making. It doesn’t mean she’s well, or that it’s not infection-triggered. It just makes you a little more afraid of rocking the boat. We were able to make some pretty drastic medical decisions because my son was terrified there was a robber in the house 24 hours a day (and yes, we tried some things that didn’t work, but they helped lead us to the things that did). He missed about half of 3rd grade. He was terrified, miserable, his personality changed, and he was talking about wanting to die. It does give you the motivation and license to move more quickly, spend more money, and take greater risks. But I don’t see you “not doing anything.” You are just moving more slowly, and not jumping into any of the more drastic options (such as steroids or removing tonsils). That’s ok. You will get there.

 

I think everyone has jumped in on this discussion because we all become extremely alarmed and upset when someone talks about “giving up.” IMHO, that’s the only way to fail to get your child better. When I read your post, I didn’t believe for a second that you would give up. I just thought you were feeling frightened, paralyzed and desperate, as we all have at one time or another. You will find your way. You will find the right doctor. You will find the courage to try something else for your daughter. You will find the voice to convince your husband. You might make mistakes along the way – we all have – but you will realize it, try something else, and eventually get her well. Hang in there!

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