Wellness

[chickenbutt]

Ha!  Yeah, really.  It seems like I discover something new all the time and I'm not all that old I guess (62).     Getting older is just weird.  

[LilacTree]

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@chickenbutt wrote:

Ha!  Yeah, really.  It seems like I discover something new all the time and I'm not all that old I guess (62).     Getting older is just weird.  

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@chickenbutt

Yes . . . and it gets weirder and faster each year.  I remember 62 as though it was yesterday.  17 years . . . WHOOSH!!!

[Zhills]

Wish you felt as good as you look!  You look marvelous for 79.  Your skin, eyes and smile are beautiful for any age!

[LilacTree]

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@Zhills wrote:

Wish you felt as good as you look!  You look marvelous for 79.  Your skin, eyes and smile are beautiful for any age!

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@Zhills

Thank you Zhills.  But believe me, I would give it up any day for less pain, less discomfort, non-disfigured hands and fingers (very embarrassing), and a whole list of other daily symptoms. 

I truly believe the small amount of prednisone that I take (8 mgs) gives me the fullness in my face.  Individuals who take higher dosages of pred get too full in the face, but maybe the small amount of pred gives me just the right amount.  People are always commenting that I have no wrinkles and that's the only explanation I can think of. 

I have plenty of wrinkles over the rest of my body, and thin loose skin as well.  My body looks my age . . . my face doesn't.

[DianeJ2]

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

[LilacTree]

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@DianeJ2 wrote:

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

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@DianeJ2

I do remember our conversation, but am embarrassed to admit I did not remember your user name.  I apologize.  Yes, unfortunately my daughter and I know quite a bit about Lyme and autoimmune diseases.  Believe it or not many of our symptoms are the same, especially the profound exhaustion. 

She doesn't have the physical disfigurement, but she has the pain and strange sensations, and brain fog that Lyme sufferers experience every day.  She gets weekly IV supplements at her doc's office, and she's back on doxycycline, so she has been a little better the past month.  Thank goodness she can still drive because I can't.  And, of course, she has to pay everything out of pocket because Lyme is still negated by the general medical community.  As you said, doctors don't know (or care to know) how to treat a disease they don't believe exists.

She also has had it for a very long time, as you indicated, probably since her teens.  It laid low, hiding in her body and then struck four or five years ago, getting worse each year until she could no longer work.  She is near your age, at 53, so maybe menopause was the trigger.

Thank you for your sweet post.  My heart goes out to you.  As bad as Lyme is, the derision of the medical community and government rejection for disability is the worst. 

Hang in there DianeJ.  I am happy to reconnect!

[Trinity11]

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@LilacTree wrote:

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@DianeJ2 wrote:

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

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@DianeJ2

I do remember our conversation, but am embarrassed to admit I did not remember your user name.  I apologize.  Yes, unfortunately my daughter and I know quite a bit about Lyme and autoimmune diseases.  Believe it or not many of our symptoms are the same, especially the profound exhaustion. 

She doesn't have the physical disfigurement, but she has the pain and strange sensations, and brain fog that Lyme sufferers experience every day.  She gets weekly IV supplements at her doc's office, and she's back on doxycycline, so she has been a little better the past month.  Thank goodness she can still drive because I can't.  And, of course, she has to pay everything out of pocket because Lyme is still negated by the general medical community.  As you said, doctors don't know (or care to know) how to treat a disease they don't believe exists.

She also has had it for a very long time, as you indicated, probably since her teens.  It laid low, hiding in her body and then struck four or five years ago, getting worse each year until she could no longer work.  She is near your age, at 53, so maybe menopause was the trigger.

Thank you for your sweet post.  My heart goes out to you.  As bad as Lyme is, the derision of the medical community and government rejection for disability is the worst. 

Hang in there DianeJ.  I am happy to reconnect!

---

@LilacTree I often think the medical community does not recognize a lot. I complained about chest discomfort for weeks and 2 doctors had seen me the week of my second heart attack. Apparently, the first doc I had did a lousy job and left a partially closed artery without fixing it. This new guy is renowned in his field and I am able to get around again like years ago. I think if your daughter saw someone renowned in infectious disease she may get some answers. Does she have insurance? It should be covered. It's just not right she is paying out of pocket for her medical care.

[LilacTree]

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@Trinity11 wrote:

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@LilacTree wrote:

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@DianeJ2 wrote:

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

---

@DianeJ2

I do remember our conversation, but am embarrassed to admit I did not remember your user name.  I apologize.  Yes, unfortunately my daughter and I know quite a bit about Lyme and autoimmune diseases.  Believe it or not many of our symptoms are the same, especially the profound exhaustion. 

She doesn't have the physical disfigurement, but she has the pain and strange sensations, and brain fog that Lyme sufferers experience every day.  She gets weekly IV supplements at her doc's office, and she's back on doxycycline, so she has been a little better the past month.  Thank goodness she can still drive because I can't.  And, of course, she has to pay everything out of pocket because Lyme is still negated by the general medical community.  As you said, doctors don't know (or care to know) how to treat a disease they don't believe exists.

She also has had it for a very long time, as you indicated, probably since her teens.  It laid low, hiding in her body and then struck four or five years ago, getting worse each year until she could no longer work.  She is near your age, at 53, so maybe menopause was the trigger.

Thank you for your sweet post.  My heart goes out to you.  As bad as Lyme is, the derision of the medical community and government rejection for disability is the worst. 

Hang in there DianeJ.  I am happy to reconnect!

---

@LilacTree I often think the medical community does not recognize a lot. I complained about chest discomfort for weeks and 2 doctors had seen me the week of my second heart attack. Apparently, the first doc I had did a lousy job and left a partially closed artery without fixing it. This new guy is renowned in his field and I am able to get around again like years ago. I think if your daughter saw someone renowned in infectious disease she may get some answers. Does she have insurance? It should be covered. It's just not right she is paying out of pocket for her medical care.

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@Trinity11

Yes, she has insurance for which she pays $600 per month and has yet to use it.  It does not recognize chronic Lyme, as no insurance companies do.  It is not recognized as a true health issue.  She has a lawyer (useless, IMO) who is trying to get her disability, and that has dragged out for three years now.  She was rejected on the basis of chronic Lyme.  He is supposedly now trying under the diagnosis of chronic fatigue syndrome, but she hasn't heard from him in months.  These disability lawyers don't get paid until they are successful, so I think he, too, has lost interest in her.

She has also been to naturopaths, one as far as 200 miles away.  And an infectious disease doctor, who she now sees, who at least believes the condition exists, but seems to have no ability to help her other than the IV supplements she gets every week, which do help some.  There is simply nowhere else to go, she has tried everything.

I've read about your heart issues here on the BB, and I can't believe what you have been through.  A "surgeon" closed you up with an exposed artery?  That is unconscionable.  Thank God you found another to fix it.  I'm happy that you're feeling better.  You are lucky.

I think, as you indicated, that doctors depend too much on the hundreds of new (and toxic) meds, and don't really do much in the way of "doctoring" anymore.  I get criticized for saying that, but how can one think anything else?  I have several doctors, who supposedly send reports to each other (that they do not read until you are sitting right in front of them, and that's not reading, it's just skimming).  The PCP is supposed to put it all together, but that doesn't happen either.  And the specialists don't want to discuss anything other than their specialty.  Oh well, most of us are beginning to accept this and have to do our own research in the end.  I know I know more about my health issues than any of my doctors do.  I have seen, in the ten minutes I have for an appointment, that they do not even record on their computers the various issues I may bring up.

Enough ranting, Trin.  Mornings are my worst times, so I rant more then than later in the day, LOL!!

[Trinity11]

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@LilacTree wrote:

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@Trinity11 wrote:

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@LilacTree wrote:

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@DianeJ2 wrote:

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

---

@DianeJ2

I do remember our conversation, but am embarrassed to admit I did not remember your user name.  I apologize.  Yes, unfortunately my daughter and I know quite a bit about Lyme and autoimmune diseases.  Believe it or not many of our symptoms are the same, especially the profound exhaustion. 

She doesn't have the physical disfigurement, but she has the pain and strange sensations, and brain fog that Lyme sufferers experience every day.  She gets weekly IV supplements at her doc's office, and she's back on doxycycline, so she has been a little better the past month.  Thank goodness she can still drive because I can't.  And, of course, she has to pay everything out of pocket because Lyme is still negated by the general medical community.  As you said, doctors don't know (or care to know) how to treat a disease they don't believe exists.

She also has had it for a very long time, as you indicated, probably since her teens.  It laid low, hiding in her body and then struck four or five years ago, getting worse each year until she could no longer work.  She is near your age, at 53, so maybe menopause was the trigger.

Thank you for your sweet post.  My heart goes out to you.  As bad as Lyme is, the derision of the medical community and government rejection for disability is the worst. 

Hang in there DianeJ.  I am happy to reconnect!

---

@LilacTree I often think the medical community does not recognize a lot. I complained about chest discomfort for weeks and 2 doctors had seen me the week of my second heart attack. Apparently, the first doc I had did a lousy job and left a partially closed artery without fixing it. This new guy is renowned in his field and I am able to get around again like years ago. I think if your daughter saw someone renowned in infectious disease she may get some answers. Does she have insurance? It should be covered. It's just not right she is paying out of pocket for her medical care.

---

@Trinity11

Yes, she has insurance for which she pays $600 per month and has yet to use it.  It does not recognize chronic Lyme, as no insurance companies do.  It is not recognized as a true health issue.  She has a lawyer (useless, IMO) who is trying to get her disability, and that has dragged out for three years now.  She was rejected on the basis of chronic Lyme.  He is supposedly now trying under the diagnosis of chronic fatigue syndrome, but she hasn't heard from him in months.  These disability lawyers don't get paid until they are successful, so I think he, too, has lost interest in her.

She has also been to naturopaths, one as far as 200 miles away.  And an infectious disease doctor, who she now sees, who at least believes the condition exists, but seems to have no ability to help her other than the IV supplements she gets every week, which do help some.  There is simply nowhere else to go, she has tried everything.

I've read about your heart issues here on the BB, and I can't believe what you have been through.  A "surgeon" closed you up with an exposed artery?  That is unconscionable.  Thank God you found another to fix it.  I'm happy that you're feeling better.  You are lucky.

I think, as you indicated, that doctors depend too much on the hundreds of new (and toxic) meds, and don't really do much in the way of "doctoring" anymore.  I get criticized for saying that, but how can one think anything else?  I have several doctors, who supposedly send reports to each other (that they do not read until you are sitting right in front of them, and that's not reading, it's just skimming).  The PCP is supposed to put it all together, but that doesn't happen either.  And the specialists don't want to discuss anything other than their specialty.  Oh well, most of us are beginning to accept this and have to do our own research in the end.  I know I know more about my health issues than any of my doctors do.  I have seen, in the ten minutes I have for an appointment, that they do not even record on their computers the various issues I may bring up.

Enough ranting, Trin.  Mornings are my worst times, so I rant more then than later in the day, LOL!!

---

@LilacTreeShe should probably go to a top doctor, someone tops in his field for infectitious diseases saying that she continues to have symptoms and needs a diagnosis. Since chronic Lyme is not recognized something else is perhaps the source of her pain. I think she needs to use her insurance for main-stream top in their field infectitious disease specialists. I don't think naturopath docs have the expertise and often just agree with the patient to make $. Since she is still suffering, personally, I would encourage her to open her mind to other treatments and get a firm recognized diagnosis within the medical community. There are some excellent physicians out there and it's not easy to find one. I jumped through some hoops to find this doctor..he is booked solid for a year. A friend of a friend got me in..worked in the Cath lab with him and pleaded my case.

I believe the meds contributed to keeping me alive. That's where we differ. The plavix with all its side effects kept me from dying. The artery was supposedly fixed and re-stenosis set in. It was less than a year but the new doctor thought it was mishandled and done improperly...the stent was improperly placed. I am blessed to have found a doctor who really fixed the problem and will follow me for a lifetime. 

As always my heart goes out to you. 

[LilacTree]

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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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@DianeJ2 wrote:

@LilacTree I totally agree with you on Nursery Practicioners!  They do seem to be more up to date on trying both western&naturopath treatments... my own doctor left and I'm stuck with a new one... who doesn't know lyme/autoimmune   I get the eyeroll alot now too  You have alot of experience with these issues, sounds like the nurse practitioner is a good match for you!! 

 I don't know if you remember me, we chatted on another board about your daughters chronic lyme (I have it too, since age 19, I'm 49 now, yikes, getting up there lol). I know you both have been through so much, time for some good things coming your way 💐 

---

@DianeJ2

I do remember our conversation, but am embarrassed to admit I did not remember your user name.  I apologize.  Yes, unfortunately my daughter and I know quite a bit about Lyme and autoimmune diseases.  Believe it or not many of our symptoms are the same, especially the profound exhaustion. 

She doesn't have the physical disfigurement, but she has the pain and strange sensations, and brain fog that Lyme sufferers experience every day.  She gets weekly IV supplements at her doc's office, and she's back on doxycycline, so she has been a little better the past month.  Thank goodness she can still drive because I can't.  And, of course, she has to pay everything out of pocket because Lyme is still negated by the general medical community.  As you said, doctors don't know (or care to know) how to treat a disease they don't believe exists.

She also has had it for a very long time, as you indicated, probably since her teens.  It laid low, hiding in her body and then struck four or five years ago, getting worse each year until she could no longer work.  She is near your age, at 53, so maybe menopause was the trigger.

Thank you for your sweet post.  My heart goes out to you.  As bad as Lyme is, the derision of the medical community and government rejection for disability is the worst. 

Hang in there DianeJ.  I am happy to reconnect!

---

@LilacTree I often think the medical community does not recognize a lot. I complained about chest discomfort for weeks and 2 doctors had seen me the week of my second heart attack. Apparently, the first doc I had did a lousy job and left a partially closed artery without fixing it. This new guy is renowned in his field and I am able to get around again like years ago. I think if your daughter saw someone renowned in infectious disease she may get some answers. Does she have insurance? It should be covered. It's just not right she is paying out of pocket for her medical care.

---

@Trinity11

Yes, she has insurance for which she pays $600 per month and has yet to use it.  It does not recognize chronic Lyme, as no insurance companies do.  It is not recognized as a true health issue.  She has a lawyer (useless, IMO) who is trying to get her disability, and that has dragged out for three years now.  She was rejected on the basis of chronic Lyme.  He is supposedly now trying under the diagnosis of chronic fatigue syndrome, but she hasn't heard from him in months.  These disability lawyers don't get paid until they are successful, so I think he, too, has lost interest in her.

She has also been to naturopaths, one as far as 200 miles away.  And an infectious disease doctor, who she now sees, who at least believes the condition exists, but seems to have no ability to help her other than the IV supplements she gets every week, which do help some.  There is simply nowhere else to go, she has tried everything.

I've read about your heart issues here on the BB, and I can't believe what you have been through.  A "surgeon" closed you up with an exposed artery?  That is unconscionable.  Thank God you found another to fix it.  I'm happy that you're feeling better.  You are lucky.

I think, as you indicated, that doctors depend too much on the hundreds of new (and toxic) meds, and don't really do much in the way of "doctoring" anymore.  I get criticized for saying that, but how can one think anything else?  I have several doctors, who supposedly send reports to each other (that they do not read until you are sitting right in front of them, and that's not reading, it's just skimming).  The PCP is supposed to put it all together, but that doesn't happen either.  And the specialists don't want to discuss anything other than their specialty.  Oh well, most of us are beginning to accept this and have to do our own research in the end.  I know I know more about my health issues than any of my doctors do.  I have seen, in the ten minutes I have for an appointment, that they do not even record on their computers the various issues I may bring up.

Enough ranting, Trin.  Mornings are my worst times, so I rant more then than later in the day, LOL!!

---

@LilacTreeShe should probably go to a top doctor, someone tops in his field for infectitious diseases saying that she continues to have symptoms and needs a diagnosis. Since chronic Lyme is not recognized something else is perhaps the source of her pain. I think she needs to use her insurance for main-stream top in their field infectitious disease specialists. I don't think naturopath docs have the expertise and often just agree with the patient to make $. Since she is still suffering, personally, I would encourage her to open her mind to other treatments and get a firm recognized diagnosis within the medical community. There are some excellent physicians out there and it's not easy to find one. I jumped through some hoops to find this doctor..he is booked solid for a year. A friend of a friend got me in..worked in the Cath lab with him and pleaded my case.

I believe the meds contributed to keeping me alive. That's where we differ. The plavix with all its side effects kept me from dying. The artery was supposedly fixed and re-stenosis set in. It was less than a year but the new doctor thought it was mishandled and done improperly...the stent was improperly placed. I am blessed to have found a doctor who really fixed the problem and will follow me for a lifetime. 

As always my heart goes out to you. 

---

@Trinity11

She has been tested for Lyme (I have forgotten the name of the test) several times and it always comes  up positive.  She communicates with many other Lyme sufferers and they all have the same issues (and frustrations).  I will admit "Chronic Lyme" is right now the "disease du jour," but hers came on long before famous people started saying they had it.  She never even thought of it until she tested positive for it.  And most of the rich and famous find a "cure" much faster than someone like my daughter because they go to Germany and other countries and pay hundreds of thousands of dollars to get treated.  As it is, she uses every cent of her alimony to pay for doctors and various meds and supplements.  She doesn't have the money for top docs or the travel it would require.

I understand your suspicion that this could be something else more treatable.  I lost a long time friend who was bitten by a tick and treated immediately for Lyme and no longer has it.  She did not believe me or my daughter either because she was lucky to have it treated in time (three weeks to a month).  As I tried to explain, she told me she was "too busy right now" and I haven't heard from her since.   

You were unfortunate to have heart issues, but then fortunate, because it's recognized by the medical profession.  And that is why you were eventually cured.  Again, thank God for that.

My RA is believed simply because blood tests indicated it, followed by the physical disfiguration of my hands and fingers, which are ugly and can't be missed.

My heart tells me our differing opinions will not affect our friendship.