update

[Guest guest]

Thanks , I don't want any more Naproxen or medicine like that, it's no fun having my stomach bleeding and it hurting/feeling upset! I hope that if my Dr. gives me another shot it will work better this time. I see him on July 16th. Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

One thing I thought about with the Naproxen is that I needed to eat a ton of food before I took it or I'd be really sick. I could never eat as much food as I needed to get past the feeling awful threshold either, not without stuffing myself and making myself nearly sick that way. ick, yuck, ick. That was 20 years ago I was on that darn med probably for about a year. Ugh.

Re: update

Thanks . My foot still hurts but I'm wearing shoes to try and get it used to it again. The shots helped some but not enough...oh well, I will just have to live with it.

I think I took Naproxen before but it didn't bother me so maybe it was a higher dose or it bothers my stomach now...whatever the reason I'm not taking any more aspirin-based meds again when they bother my stomach that much.

Today I'm cleaning my computer room so that will be my exercise!

Run dust bunnies RUN!

Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

One thing I thought about with the Naproxen is that I needed to eat a ton of food before I took it or I'd be really sick. I could never eat as much food as I needed to get past the feeling awful threshold either, not without stuffing myself and making myself nearly sick that way. ick, yuck, ick. That was 20 years ago I was on that darn med probably for about a year. Ugh.

Re: update

Thanks . My foot still hurts but I'm wearing shoes to try and get it used to it again. The shots helped some but not enough...oh well, I will just have to live with it.

I think I took Naproxen before but it didn't bother me so maybe it was a higher dose or it bothers my stomach now...whatever the reason I'm not taking any more aspirin-based meds again when they bother my stomach that much.

Today I'm cleaning my computer room so that will be my exercise!

Run dust bunnies RUN!

Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

Hi , I was on it for about a week when I noticed some blood in the toilet and since I don't have periods any more I figured it was from the medicine!' It's strange, I ate it with lunch and dinner and it never upset or hurt my stomach then it all of a sudden caused bleeding, WEIRD! My stomach isn't bleeding any more (that I can see) but will finish the 14 days of Prilosec, just to be sure my stomach has healed. I think my podiatrist may give me another shot since my poor foot STILL hurts and is swollen.... Oh well, I still lost weight this week!!YIPPEE! Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

Wow, that would be really scary! Good thing you were able to pinpoint the medicine quickly. I hope the Prilosec does the job. I hated getting the shots for my foot but I loved how much better I felt when the shots finally worked. I hope this is it for you! Congrats on the weight loss!

Re: update

Hi , I was on it for about a week when I noticed some blood in the toilet and since I don't have periods any more I figured it was from the medicine!' It's strange, I ate it with lunch and dinner and it never upset or hurt my stomach then it all of a sudden caused bleeding, WEIRD! My stomach isn't bleeding any more (that I can see) but will finish the 14 days of Prilosec, just to be sure my stomach has healed. I think my podiatrist may give me another shot since my poor foot STILL hurts and is swollen.... Oh well, I still lost weight this week!!YIPPEE! Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

Thanks . I was surprised that I lost 4 lbs though.... but I'll take it Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

Thanks . I was surprised that I lost 4 lbs though.... but I'll take it Jen

I went back to the podiatrist because my foot was still swollen and he gave me two more shots along the joint on top of my foot. It's still swollen (only went down a little) and still hurts a lot. I haven't tried to wear shoes yet because it's too sore right now. The naproxen my Dr. prescribed to reduce the swelling caused bleeding in my stomach and/or intestines so he told me to stop using it and to get Prilosec to reduce the acid in my stomach so that it can heal. WELL, I still have bleeding but now my stomach hurts from the prilosec and after I eat it gets upset. GEEZ what else can go wrong!? I'm getting really mad and frustrated because I wanted to start walking again but I can't yet. The only good news is that at least I can go swimming and water exercise.FRUSTRATED, Jen

[Guest guest]

Thank you, We are going the nih route as well his blood has been there

about a month. Wonderful story. char

[Guest guest]

Who did u see at Mayo. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Feb 2, 2010, at 2:32 PM, Kim <kimshannons@...> wrote:

Hello Dr. G and all:

I haven't posted in awhile cause of being so sick. I had daily vomiting for over a year, was diagnosed with gastroparesis which has since resolved. I am still vomiting but not daily, some think I may have cyclic vomiting syndrome, but I have a lot of nausea in between attacks so not sure of diagnosis. I was to the Mayo again last year because of the vomiting as well as fainting. Was diagnosed with some sort of autonomic dysfunction and and am hyperadrenergic. They (Mayo docs) took me off of Spiro cause I was volume depleted due to all the vomiting. Was put on clonidine patches, so I wouldn't be vomiting my meds. For the past year my BP has not been good, running high and then episodes of low BP (that's when I faint). Because vomiting has improved I was just put back on Spiro and am presently titrating up to find the dose that will work. So far only on 50 mg and still averaging 150/110 or so, with spikes much higher. While at Mayo, they diagnosed me with resistant hypertension with

inappropriate aldo. The endo I saw there would like me to come back and get the complete work up once I got the vomiting under control. Not sure what good it would do, so haven't done so. What sucks is the end organ damage I have suffered, had acute kidney failure last January, thank goodness my kidneys have been ok since then altho my creatinine baseline runs high now (1.3 to 1.5). My aorta is 'stretched' but not too bad. I also have white matter changes on my brain. I just started getting chest pains 2 weeks ago so am having a CTA on the 11th. I understand we are very lucky to have a CT capable (I am in an extremely rural area -- my town is only 180 people), moved it up here from abbott northwestern. Hopefully, my arteries won't be too clogged up....

My aldo was higher last time they checked, at 43(normal <=21) but my renin was also up due to dehydration (1.9), when last time they checked it was non-existent. Of interest, the hypertension/nephrology guy I saw at the Mayo doesn't think I have primary aldo -- not sure what he thinks I DO have....

Am trying to stick to my Dash diet, but has been difficult with all the gastro stuff going on. I do however, still limit salt as much as possible.

Thanks for your interest,

Kim

>

> > Hey all, it has been awhile, I've not been too well so not much

> > computer time (got to a lap top!). I feel like a dummy because I

> > could not think of a better title for this comment. I am not against

> > long messages, we all need them from time to time, especially when

> > sharing our stories for the 1st time. But I find it difficult to

> > have to read through 10 attached posts to find the question that was

> > answered in the 1st post. Is it just me? If so I apologize, don't

> > want to be grumpy!! But maybe we could take an extra minute and just

> > delete the extra junk and leave what the central issue is. Thanks

> > for letting me vent, and I sure hope I didn't hurt anyone's feelings

> > or worse. You guys are my lifeline!!

> >

> >

> >

>

[Guest guest]

Kim, have you been tested for Lyme?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Kim

Hello Dr. G and all:

I haven't posted in awhile cause of being so sick. I had daily vomiting for

over a year, was diagnosed with gastroparesis which has since resolved. I am

still vomiting but not daily, some think I may have cyclic vomiting syndrome,

but I have a lot of nausea in between attacks so not sure of diagnosis. I was

to the Mayo again last year because of the vomiting as well as fainting. Was

diagnosed with some sort of autonomic dysfunction and and am hyperadrenergic.

They (Mayo docs) took me off of Spiro cause I was volume depleted due to all

the vomiting. Was put on clonidine patches, so I wouldn't be vomiting my meds.

For the past year my BP has not been good, running high and then episodes of

low BP (that's when I faint). Because vomiting has improved I was just put back

on Spiro and am presently titrating up to find the dose that will work. So far

only on 50 mg and still averaging 150/110 or so, with spikes much higher. While

at Mayo, they diagnosed me with resistant hypertension with inappropriate aldo.

The endo I saw there would like me to come back and get the complete work up

once I got the vomiting under control. Not sure what good it would do, so

haven't done so. What sucks is the end organ damage I have suffered, had acute

kidney failure last January, thank goodness my kidneys have been ok since then

altho my creatinine baseline runs high now (1.3 to 1.5). My aorta is

'stretched' but not too bad. I also have white matter changes on my brain. I

just started getting chest pains 2 weeks ago so am having a CTA on the 11th. I

understand we are very lucky to have a CT capable (I am in an extremely rural

area -- my town is only 180 people), moved it up here from abbott northwestern.

Hopefully, my arteries won't be too clogged up....

My aldo was higher last time they checked, at 43(normal <=21) but my renin

was also up due to dehydration (1.9), when last time they checked it was

non-existent. Of interest, the hypertension/nephrology guy I saw at the Mayo

doesn't think I have primary aldo -- not sure what he thinks I DO have....

Am trying to stick to my Dash diet, but has been difficult with all the gastro

stuff going on. I do however, still limit salt as much as possible.

[Guest guest]

Hey Dr. G. and Val, thanks to both for the reply. The 1st time I was at Mayo

(this is the Mayo in Rochester) in 2006, was diagnosed with primary

aldosteronism by Graves (the Jr., not Sr.) (hypertension/nephrology). This

last visit (2009) I saw Dr. (hypertension/nephrology) -- he is

the one that wasn't sure about Dr. Graves diagnosis and changed it to

'inappropriate aldosteronism with resistant hypertension'. Very nice guy and

extremely smart....but thought that my current hypertension problem had more to

due with vomiting meds than anything else. I also saw Dr. Abboud in

Endocrinology, he is the one that suggested I come back when gastro issues were

resolved for more definitive testing (I have never had the salt loading test).

Now mostly I see Dr. Fealey in Neurology, altho he has agreed to be

available to my local nuero and internist if they need to consult to save me so

many trips down to Rochester.

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed

for lymes and other related tick diseases, so MN docs are very up on the latest

tests, etc. I have had 3 dogs get lyme's even while using the tick products --

so, yes we have a large population of deer ticks. In fact, I have had friends

with lyme's and well as the other one, can't think of the name for the life of

me...echinosis or something like that, sorry!!

>

> Who did u see at Mayo.

>

>

> > > >

> > > >

> > >

> >

> >

>

[Guest guest]

Kim, testing for Lyme is very tricky and most labs do not do

well. Where were you tested? What tests were done? My tests 21 years ago were negative (in

Minnesota), and a year ago were borderline. It wasn't until I took five days of

heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came

back all positive. Testing for Lyme

in serum is difficult after the initial infection period. Certainly, the antibiotics have

tremendously healed my irritable bladder and need to be up all night

peeing. I have learned that unless

a doc specializes in the diagnosis and treatment of Lyme, you're probably not

going to get good service. I fly to

CA to see one. There are only three

that I know of in Colorado. CA has

passed a law protecting docs who treat long-term Lyme, and Colorado docs try to

stay under the radar. I think

Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address

any symptoms except for those of PA, and my niece's doc (Phoenix) decided she

was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics

healed her psychological problems and made it possible for her to graduate

school. She's still not 100% but is

well enough to be working on an advanced degree.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This

area is a hotbed for lymes and other related tick diseases, so MN docs are very

up on the latest tests, etc. I have had 3 dogs get lyme's even while using the

tick products -- so, yes we have a large population of deer ticks. In fact, I

have had friends with lyme's and well as the other one, can't think of the name

for the life of me...echinosis or something like that, sorry!!

[Guest guest]

Kim, here's info on what's going on in MN re Lyme

http://www.twincities.com/ci_14361685?nclick_check=1

Val

[Guest guest]

I know Graves and : inappropriate aldosteronism is another name for early PA in my book-well make that my hypothesis in my article (first suggest about 35 years ago.. Guess he has not read my article. CE Grim MDOn Feb 9, 2010, at 7:14 AM, Kim wrote:Hey Dr. G. and Val, thanks to both for the reply. The 1st time I was at Mayo (this is the Mayo in Rochester) in 2006, was diagnosed with primary aldosteronism by Graves (the Jr., not Sr.) (hypertension/nephrology). This last visit (2009) I saw Dr. (hypertension/nephrology) -- he is the one that wasn't sure about Dr. Graves diagnosis and changed it to 'inappropriate aldosteronism with resistant hypertension'. Very nice guy and extremely smart....but thought that my current hypertension problem had more to due with vomiting meds than anything else. I also saw Dr. Abboud in Endocrinology, he is the one that suggested I come back when gastro issues were resolved for more definitive testing (I have never had the salt loading test). Now mostly I see Dr. Fealey in Neurology, altho he has agreed to be available to my local nuero and internist if they need to consult to save me so many trips down to Rochester.and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!>> Who did u see at Mayo.> > > > > >> > > >> > >> >> >>

[Guest guest]

And why do Lyme Drs need to be protected?CE Grim MDOn Feb 9, 2010, at 3:11 PM, Valarie wrote:Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/ I'm betting you have Lyme and possibly, co-infections. I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Kimand Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very recently, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2@... sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldosteronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very recently, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2@... sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldosteronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

But if the treatment is so dramatic a proper trial would quickly proven benefit or not. Why has no one done this? CE GrimMDOn Feb 10, 2010, at 9:44 PM, val@... wrote:Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very recently, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.I'll post my progress in a separate note.ValOn Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:And why do Lyme Drs need to be protected?CE Grim MDOn Feb 9, 2010, at 3:11 PM, Valarie wrote:Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/ I'm betting you have Lyme and possibly, co-infections. I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree. Val From: hyperaldosteronism [ mailto:hyperaldosteronism ] On Behalf Of Kimand Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

But if the treatment is so dramatic a proper trial would quickly proven benefit or not. Why has no one done this? CE GrimMDOn Feb 10, 2010, at 9:44 PM, val@... wrote:Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very recently, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.I'll post my progress in a separate note.ValOn Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:And why do Lyme Drs need to be protected?CE Grim MDOn Feb 9, 2010, at 3:11 PM, Valarie wrote:Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/ I'm betting you have Lyme and possibly, co-infections. I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree. Val From: hyperaldosteronism [ mailto:hyperaldosteronism ] On Behalf Of Kimand Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

I don't know that there has not been. I just have not been able to research it adequatgely. Lots of evidence was presented at the IDSA re-hearings last fall. Columbia University now has a Lyme research unit. These doctors who treat Lyme are not shooting in the dark.

Val

On Wed 10/02/10 10:26 PM , Clarence Grim lowerbp2@... sent:

But if the treatment is so dramatic a proper trial would quickly proven benefit or not.

Why has no one done this?

CE GrimMD

On Feb 10, 2010, at 9:44 PM, val@... wrote:

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very rece ntly, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? & nbsp; What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

< o style="font-size: 0px;">

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldost eronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

I don't know that there has not been. I just have not been able to research it adequatgely. Lots of evidence was presented at the IDSA re-hearings last fall. Columbia University now has a Lyme research unit. These doctors who treat Lyme are not shooting in the dark.

Val

On Wed 10/02/10 10:26 PM , Clarence Grim lowerbp2@... sent:

But if the treatment is so dramatic a proper trial would quickly proven benefit or not.

Why has no one done this?

CE GrimMD

On Feb 10, 2010, at 9:44 PM, val@... wrote:

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very rece ntly, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? & nbsp; What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

< o style="font-size: 0px;">

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldost eronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

What I want to see though is good proof that the cost is justified in a careful study. If folks are spending millions on the drugs but there is not documentation( good trials) that the drugs help then they are wasting money.

See if Columbia is doing any trials. That would seem to be a first step. When "miracles" happen with a new therapy it should be very easy to demonstrate. Clarence E. Grim, BS, MS, MD

Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today.

On Wednesday, February 10, 2010, at 11:22PM, <val@...> wrote:

>

I don't know that there has not been. I just have not been able to research it adequatgely. Lots of evidence was presented at the IDSA re-hearings last fall. Columbia University now has a Lyme research unit. These doctors who treat Lyme are not shooting in the dark.

Val

On Wed 10/02/10 10:26 PM , Clarence Grim lowerbp2mac sent:

But if the treatment is so dramatic a proper trial would quickly proven benefit or not.

Why has no one done this?

CE GrimMD

On Feb 10, 2010, at 9:44 PM, val@... wrote:

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very rece ntly, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? & nbsp; What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

< o style="font-size: 0px;">

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldost eronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

What I want to see though is good proof that the cost is justified in a careful study. If folks are spending millions on the drugs but there is not documentation( good trials) that the drugs help then they are wasting money.

See if Columbia is doing any trials. That would seem to be a first step. When "miracles" happen with a new therapy it should be very easy to demonstrate. Clarence E. Grim, BS, MS, MD

Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today.

On Wednesday, February 10, 2010, at 11:22PM, <val@...> wrote:

>

I don't know that there has not been. I just have not been able to research it adequatgely. Lots of evidence was presented at the IDSA re-hearings last fall. Columbia University now has a Lyme research unit. These doctors who treat Lyme are not shooting in the dark.

Val

On Wed 10/02/10 10:26 PM , Clarence Grim lowerbp2mac sent:

But if the treatment is so dramatic a proper trial would quickly proven benefit or not.

Why has no one done this?

CE GrimMD

On Feb 10, 2010, at 9:44 PM, val@... wrote:

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very rece ntly, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? & nbsp; What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

< o style="font-size: 0px;">

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldost eronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

I have a lot of that stored on my computer but it is out for repair. I will send some along as I find it. I wish I knew enough about this that I didn't need a doctor, but I don't. By expensive, I'm not talking "millions." Doxycycline and most antibiotics are generic and quite inexpensive. What's expensive is the length of time healing takes, and the difficulty of finding physicians who understand the damage of untreated spirochete-type bacteria.

I just read a NEJM case study at Mass Gen. The patient had vision issues, myalgia, oral ulcers, fatigue, tinnitus, TMJ, a paralyzed vocal cord, fevers, inflammatory joint pain, vision disturbances, lupus-like symptoms, arthritis-like symptoms. All sorts of diagnoses were considerd with no real resolution. Of all the tests done, none were for Borrelia Burgdorferi and co-infections. This was right in the middle of probably the most Lyme endemic region of the country, if not the world.

http://content.nejm.org/cgi/content/full/362/6/537?ijkey=IYy7qYASYbO0Q & keytype=ref & siteid=nejm

BTW, McAfee virus software doesn't work. If you use it, dump it.

Val

On Thu 11/02/10 1:32 PM , lowerbp2 lowerbp2@... sent:

What I want to see though is good proof that the cost is justified in a careful study. If folks are spending millions on the drugs but there is not documentation( good trials) that the drugs help then they are wasting money.

See if Columbia is doing any trials. That would seem to be a first step.

When "miracles" happen with a new therapy it should be very easy to demonstrate.

Clarence E. Grim, BS, MS, MD

Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today.

On Wednesday, February 10, 2010, at 11:22PM, wrote:

>

I don't know that there has not been. I just have not been able to research it adequatgely. Lots of evidence was presented at the IDSA re-hearings last fall. Columbia University now has a Lyme research unit. These doctors who treat Lyme are not shooting in the dark.

Val

On Wed 10/02/10 10:26 PM , Clarence Grim lowerbp2mac sent:

But if the treatment is so dramatic a proper trial would quickly proven benefit or not.

Why has no one done this?

CE GrimMD

On Feb 10, 2010, at 9:44 PM, val@... wrote:

Treating long-term Lyme via the ILADS guidelines is not inexpensive and not without risk. Insurance companies tend not to pay, and instead, report physicians to state medical societies. I've read of several instances of physicians being hauled before medical boards for choosing to treat sick people. One physician, Ray , who has treated thousands of children with Lyme, is currently fighting to keep his license. At 82 years old, he works six days a week. His story was told in the film "Under Our Skin," one of the final 15 for a documentary Academy award.

Recently, the CT attorney general ruled that IDSA (Infectious Disease Society of America) had not developed its Lyme guidelines in good faith. Well over half the committee members had conflicts of interest and they suppressed evidence that did not support the IDSA dogma. The AG required new hearings and a new committee to reconsider the guidelines. IDSA entered into an agreement with the AG whereby it agreed to certain procedures in terms of developing new guidelines. A freedom of information request, very rece ntly, revealed that IDSA had violated the agreement. I don't know what the next step will be. I continue to be amazed that IDSA is so unwilling to consider views and evidence other than what they are already using. I think insurance company pressure is a possibility.

The CDC admits that its diagnosis guidelines miss many, many people, and admits that the actual incidence of Lyme is underreported by 10 - 12x.

I don't know the answers. I do know that my niece was an invalid at 23 years old and is now back in graduate school. I do know that I am improving on antibiotics and that my current doctor is my only hope for a half-way decent life.

I'll post my progress in a separate note.

Val

On Wed 10/02/10 1:24 AM , Clarence Grim lowerbp2mac sent:

And why do Lyme Drs need to be protected?

CE Grim MD

On Feb 9, 2010, at 3:11 PM, Valarie wrote:

Kim, testing for Lyme is very tricky and most labs do not do well. Where were you tested? & nbsp; What tests were done? My tests 21 years ago were negative (in Minnesota), and a year ago were borderline. It wasn't until I took five days of heavy duty antibiotics and then did urine tests on days 2, 4, 6 that mine came back all positive. Testing for Lyme in serum is difficult after the initial infection period. Certainly, the antibiotics have tremendously healed my irritable bladder and need to be up all night peeing. I have learned that unless a doc specializes in the diagnosis and treatment of Lyme, you're probably not going to get good service. I fly to CA to see one. There are only three that I know of in Colorado. CA has passed a law protecting docs who treat long-term Lyme, and Colorado docs try to stay under the radar. I think Minnesota is considering protecting Lyme docs. More information at http://www.ilads.org/

I'm betting you have Lyme and possibly, co-infections.

< o style="font-size: 0px;">

I was at Mayo as was my niece. My Mayo doc (Rochester) wouldn't address any symptoms except for those of PA, and my niece's doc (Phoenix) decided she was having psychological problems from her father molesting her (NOT). It is funny how 1.5 years of antibiotics healed her psychological problems and made it possible for her to graduate school. She's still not 100% but is well enough to be working on an advanced degree.

Val

From: hyperaldosteronism [ mailto:hyperaldost eronism ] On Behalf Of Kim

and Val, yes I have been tested extensively for Lyme's. This area is a hotbed for lymes and other related tick diseases, so MN docs are very up on the latest tests, etc. I have had 3 dogs get lyme's even while using the tick products -- so, yes we have a large population of deer ticks. In fact, I have had friends with lyme's and well as the other one, can't think of the name for the life of me...echinosis or something like that, sorry!!

[Guest guest]

BTW, regarding studies of the effectiveness of long-term treatment, both the IDSA side and the ILADS side have their own studies to support them. These studies were presented at the re-hearings in July. It boils down to which studies one chooses to believe, or stated another way, which liar is correct. It also boils down to what works for those physicians who treat sick people every day. Dr, Ray has treated 10,000 children from all over the world. He is the only pediatric Lyme doctor in the world. I doubt he has much time to publish. What is happening to him is shameful. http://www.lymedisease.org/news/lyme_action_alerts/343.html

A few years down the road, we're going to be looking at this differently. I remember when the doctor discovered that stomach ulcers can be caused by a H. pylori bacteria, and I remember the abuse that was heaped upon him by mainstream medicine. If I recall correctly, he won a Nobel prize for his discovery. Today H. pylori is commonly recognized, at least by those physicians who stay current . My husband had a stomach ulcer and was hospitalized for it a couple of times, the last time for two weeks. Each time, they treated him with Valium, lots of milk, and Riopan. Then he got pneumonia. After a course of heavy duty antibiotics, his ulcer never again bothered him, and that was over 30 years ago.

Conn's was discovered in the 1950's and now, many years later, many doctors have never heard of it. My Harvard-educated FP had never heard of it. Lyme discovery is 30 years younger than Conn's so it will be a while.

Val

On Thu 11/02/10 1:32 PM , lowerbp2 lowerbp2mac sent:

What I want to see though is good proof that the cost is justified in a careful study. If folks are spending millions on the drugs but there is not documentation( good trials) that the drugs help then they are wasting money.

See if Columbia is doing any trials. That would seem to be a first step.

When "miracles" happen with a new therapy it should be very easy to demonstrate.

Clarence E. Grim, BS, MS, MD

Specializing in Primary Aldosteronism, Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in populations today.

On Wednesday, February 10, 2010, at 11:22PM, wrote:

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