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Phil,

No more LUAT see Igenex.com website for testing also BBI labs in

Connecticut, try Bowen.org in Florida, and good reading with

Lymealliance.org, or Lymenet.org

Nelly (ex:CFS now Lyme)

Lymes?

> One of my practitioners by using bioresonance testing picked up lymes

> disease last week. I would like a more " orthodox " test tried to

> diagnose it but know little about the lymes tst except some are useless

> and ther are some newer ones. I had a standard blood test 7 years ago

> when my CFS started .It of course was negative. I've heard of something

> I think called " LUAT " ? Any advice is appreciated.

>

> Phil

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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alot of people tell me that cfs and lyme is the same

is this true?

--- Nelly Pointis <janel@...> wrote:

> Phil,

> No more LUAT see Igenex.com website for testing also

> BBI labs in

> Connecticut, try Bowen.org in Florida, and good

> reading with

> Lymealliance.org, or Lymenet.org

> Nelly (ex:CFS now Lyme)

>

> Lymes?

>

>

> > One of my practitioners by using bioresonance

> testing picked up lymes

> > disease last week. I would like a more " orthodox "

> test tried to

> > diagnose it but know little about the lymes tst

> except some are useless

> > and ther are some newer ones. I had a standard

> blood test 7 years ago

> > when my CFS started .It of course was negative.

> I've heard of something

> > I think called " LUAT " ? Any advice is appreciated.

> >

> > Phil

> >

> >

> > This list is intended for patients to share

> personal experiences with each

> other, not to give medical advice. If you are

> interested in any treatment

> discussed here, please consult your doctor.

> >

> >

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Phil,

There is a very worthwhile article done by Alternative Medicine Mag

recently and it is available online at www.alternativemedicine.com

Hope this helps. Mark and

> One of my practitioners by using bioresonance testing picked up

lymes

> disease last week. I would like a more " orthodox " test tried to

> diagnose it but know little about the lymes tst except some are

useless

> and ther are some newer ones. I had a standard blood test 7 years

ago

> when my CFS started .It of course was negative. I've heard of

something

> I think called " LUAT " ? Any advice is appreciated.

>

> Phil

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Yep! great article for people wanting a good sound background on Lyme and

the controversies.

nelly

Re: Lymes?

> Phil,

> There is a very worthwhile article done by Alternative Medicine Mag

> recently and it is available online at www.alternativemedicine.com

> Hope this helps. Mark and

>

>

> > One of my practitioners by using bioresonance testing picked up

> lymes

> > disease last week. I would like a more " orthodox " test tried to

> > diagnose it but know little about the lymes tst except some are

> useless

> > and ther are some newer ones. I had a standard blood test 7 years

> ago

> > when my CFS started .It of course was negative. I've heard of

> something

> > I think called " LUAT " ? Any advice is appreciated.

> >

> > Phil

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

>

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Guest guest

I found it to print and take to my doctor tommorrow.Great article!

Phil

> > One of my practitioners by using bioresonance testing picked up

> lymes

> > disease last week. I would like a more " orthodox " test tried to

> > diagnose it but know little about the lymes tst except some are

> useless

> > and ther are some newer ones. I had a standard blood test 7 years

> ago

> > when my CFS started .It of course was negative. I've heard of

> something

> > I think called " LUAT " ? Any advice is appreciated.

> >

> > Phil

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  • 8 years later...

Please don't grasp for straws.

Clarence E. Grim, BS, MS, MD

Specializing in Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in population's today.

On Friday, November 06, 2009, at 08:31PM, "bridget" <blueyes7648@...> wrote:

>

So I think I remember a topic on lymes awhile ago, but didn't read. Just wondering if anyone knows much about it? I know it has nothing to do with Conn's, but I guess it can have a lot of symptoms of that and hyper/hypo thyroid stuff.

Chantal, if you haven't been tested for it, do it! I am in the process of it. I don't think it has anything to do with high blood pressure, but I know there are alot of people out there undiagnosed and as miserable and frustrated as I am.

Bridget

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I do agree with Dr Grim about grasping for straws. I also understand why we do

it. If all doctors did there job we would would have no need to grasp for

straws.

There is a lot of information on the Internet both good and bad. I use it a lot

to get information about many things. I have look at many medical sites. Some

have been useful some I not so useful. one has to use a lot of common sence to

get good information.

> >

>

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Doctors ONLY do what they know and no one knows the whole body.

My local internist is now a pediatric internist - works only with children.

I use her and my FP to point out the best specialists.

In my county that seems to be easy - there are none.

In the waiting rooms, my observation is that most people are there for pain

medication.

The internet is just as mixed up, and " cures " are costly.

Ticks are one reason I quit hunting.

Regards

Re: Lymes?

I do agree with Dr Grim about grasping for straws. I also understand why we

do it. If all doctors did there job we would would have no need to grasp for

straws.

There is a lot of information on the Internet both good and bad. I use it a

lot to get information about many things. I have look at many medical sites.

Some have been useful some I not so useful. one has to use a lot of common

sence to get good information.

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i think u need to complain to the Dr. That things are going so slow. Wher do u live. I may know someone close. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Nov 7, 2009, at 5:40 AM, Chantal <chantalrobichaud29@...> wrote:

On the list.... I am ruling out endo, then I hope nephro will give it a go, then give the optho a chance and then I'll see my dermatologist(every 6months for my nevi). Lyme will be towards the end of my list, I'd love to have it done sooner but I can't rock the boat. Thank goodness for my spontaneous hypokalemia otherwise they would have sent me home with blood pressure meds and a burnout, take it easy bit and nothing more to offer!

I can't push too hard. Small community... My doctor didn't even know the test for celiac... I had a terrible app. yesterday and even before I started was advised by her sister (secretary) that the doctor had meeting (ie didn't have a lot of time for my app, 3 week wait) and that she (the secretary) couldn't call the other lab to get my results directly. I told her then lets see if the doctor feels it is a priority. Yup, doc did and ended up running late for her meeting because doc called to get results. Ugh..... Butting heads, sometimes they make you feel like your an addict or something. I want test results, not drugs!!! And the endo, baffled to why my potassium is still low, saying I'll need to start something else (ie spiro) that is if I'm taking my potassium. Can you believe it? Compliant, gosh, I can't go more than 2-3 hours at times without it on my bad days. I wouldn't be functional without it.

Complaint..I'll tell you, I'm using them for now, but ugh, when I get my diagnosis after I've pushed and ruled out (by my research) the possibilities, I may give them a piece of my mind. The doctors screwed up majorly with my mom and we didn't push it after the fact.

Anyhow, what do we gain? Gosh, these app. of frustruation are as debilitating as the illness itself. I leave the office so flushed and weak that I went home, rested with my toddler without even bringing the groceries in.

Anyhow, "grasping for straws" is actually an understatement.

Today is a better day. I've had some time to flush out all the negativity of yesterday (emotionally and physically, thank goodness for those kidneys) and the sun is out. I'm not letting incompetent doctors ruin my week-end. If they don't know how to manage my case send me to someone who does. I'm giving it a month or two to see what comes around but otherwise, if I'm not drastically debilitated by that time (muscle/brain) I hope to get referred to someone who can pinpoint my illness. I hope it isn't CA and they've wasted precious treatment time!!

So, yes by rights, Lyme could/should be ruled out but I'll let that one go for now but I know another doctor that would be knowledgable on celiac, his wife was undiagnosed for a long time, lost a ton of weight, saw countless doctors and finally she was diagnosed. She is a lab tech. She did the research and figured it out all on her own and pushed the celiac thing. Voila, she has it!

Anyhow, thanks guys for the support, keep trudging along and enjoy each day as much as possible...

Take care

Chantal

> > >

> >

>

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Northern New Brunswick, but I am willing to travel if I can see someone who

knows what they are talking about.

My doc is going to do a 24 h cortisol, I asked for Hashimato's antibodies but I

didn't see it on the sheet. I'm awaiting my ARR, again thr renin was pending..

Thanks Chantal

Sometimes I just feel like driving the 3-6 hours to the closest large center...

and going to their emerg. but I've been told good luck, not much better....

Any suggestions would be greatly appreciated.

> > > > >

> > > >

> > >

> >

> >

>

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I told her I am " maggina " (sp) a french slang word for finished, exhausted...

I told her I've been having the extreme symptoms now for 2 and 1/2 months and it

is getting worse. My potassium demands are increasing. She gave me a sheet to

get a prn potassium/results to me when I need it and an OK to up my potassium to

6-7 a day.

I am dashing and I don't eat out etc. I am reading labels constantly.

Anyone in the right mind would know that something is up.

My pharmacy techs are amazed with the amt of potassium I am needing to keep my

level at 3.4-4.0....

She did put a stat on my cortisol test...

Dr. Grim I hope to get my ARR this week. I told them there are clear highs and

a constant low. Today my muscles feel like I've been working hard labor

without stretching...

Today started off not too bad but my body isn't bouncing back at all. Before I

would have a little bit of normal time but now I am constantly plagued.

I went outdoors to pick apples with my family (I've waited all week to do this,

no nature walks etc. too weak) and I actually thought to myself, I hope whatever

it is stops progressing. I had a hard time carrying the collected apples...

So, in conclusion, yes I shed a tear at my last app. I'm desperate for them to

find out. They don't seem overly concerned, my doctor is on a special board,

runs a seniors care home, has a family so I am just a number. She said this is

beyond a GP and was hoping the endo. could figure it out but to did say she felt

my endocrine wasn't explored sufficiently. The endo. wants to wait and see what

the nephro has to say.

Nephro app. in Dec. Ugh...

I have a feeling my kidneys are working fine and they are missing the boat

altogether.

Chantal

> > > > >

> > > >

> > >

> >

> >

>

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In my case my doctor has told me if I have PA in wouldn't make any difference as

he would still treat me the same way. So no point in retesting off meds to see

if I do have it. So is he doing his job? If it wasn't for the internet I

wouldn't have know that the meds I take inter fear with the tests or even what

PA was. I still do not know if I have PA only thing is you think I do based on

what I have posted on hear.

The VA Dr apointment time is 15 min. This means that the Dr has to have you keep

you on track. This means that you can't bring up many things. so things can get

missed sometimes one needs to do plan what they what to ask there doctor. Many

times I will ask my Dr something and he sometimes has to look something up in my

record so this gives less time for other things.

The internet or medical text books can never replace DR But if used right can

help both Dr and patient.

> >

>

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Don't waste money doing other tests (thyroid and corticosl) till renin and aldo are back. How far from Toronto? Can you see Drs in other provinces? or London Ontario. Clarence E. Grim, BS, MS, MD

Specializing in Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in population's today.

On Saturday, November 07, 2009, at 02:32PM, "Chantal" <chantalrobichaud29@...> wrote:

>

Northern New Brunswick, but I am willing to travel if I can see someone who knows what they are talking about.

My doc is going to do a 24 h cortisol, I asked for Hashimato's antibodies but I didn't see it on the sheet. I'm awaiting my ARR, again thr renin was pending..

Thanks Chantal

Sometimes I just feel like driving the 3-6 hours to the closest large center... and going to their emerg. but I've been told good luck, not much better....

Any suggestions would be greatly appreciated.

> > > > >

> > > >

> > >

> >

> >

>

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Did you give her my article to read. PA is not out of a Regular Drs range if they read the article. I can also email her if she is interested.

Clarence E. Grim, BS, MS, MD

Specializing in Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in population's today.

On Saturday, November 07, 2009, at 02:45PM, "Chantal" <chantalrobichaud29@...> wrote:

>

I told her I am "maggina" (sp) a french slang word for finished, exhausted...

I told her I've been having the extreme symptoms now for 2 and 1/2 months and it is getting worse. My potassium demands are increasing. She gave me a sheet to get a prn potassium/results to me when I need it and an OK to up my potassium to 6-7 a day.

I am dashing and I don't eat out etc. I am reading labels constantly.

Anyone in the right mind would know that something is up.

My pharmacy techs are amazed with the amt of potassium I am needing to keep my level at 3.4-4.0....

She did put a stat on my cortisol test...

Dr. Grim I hope to get my ARR this week. I told them there are clear highs and a constant low. Today my muscles feel like I've been working hard labor without stretching...

Today started off not too bad but my body isn't bouncing back at all. Before I would have a little bit of normal time but now I am constantly plagued.

I went outdoors to pick apples with my family (I've waited all week to do this, no nature walks etc. too weak) and I actually thought to myself, I hope whatever it is stops progressing. I had a hard time carrying the collected apples...

So, in conclusion, yes I shed a tear at my last app. I'm desperate for them to find out. They don't seem overly concerned, my doctor is on a special board, runs a seniors care home, has a family so I am just a number. She said this is beyond a GP and was hoping the endo. could figure it out but to did say she felt my endocrine wasn't explored sufficiently. The endo. wants to wait and see what the nephro has to say.

Nephro app. in Dec. Ugh...

I have a feeling my kidneys are working fine and they are missing the boat altogether.

Chantal

> > > > >

> > > >

> > >

> >

> >

>

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I assume he has never treated anyone with PA then?

Clarence E. Grim, BS, MS, MD

Specializing in Difficult High Blood Pressure and recent evolutionary forces on high blood pressure in population's today.

On Saturday, November 07, 2009, at 05:15PM, "Francis Bill" <georgewbill@...> wrote:

>

In my case my doctor has told me if I have PA in wouldn't make any difference as he would still treat me the same way. So no point in retesting off meds to see if I do have it. So is he doing his job? If it wasn't for the internet I wouldn't have know that the meds I take inter fear with the tests or even what PA was. I still do not know if I have PA only thing is you think I do based on what I have posted on hear.

The VA Dr apointment time is 15 min. This means that the Dr has to have you keep you on track. This means that you can't bring up many things. so things can get missed sometimes one needs to do plan what they what to ask there doctor. Many times I will ask my Dr something and he sometimes has to look something up in my record so this gives less time for other things.

The internet or medical text books can never replace DR But if used right can help both Dr and patient.

> >

>

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Too bad you have no choice.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

In my case my doctor has told me if I have PA in wouldn't

make any difference as he would still treat me the same way. So no point in

retesting off meds to see if I do have it. So is he doing his job? If it wasn't

for the internet I wouldn't have know that the meds I take inter fear with the

tests or even what PA was. I still do not know if I have PA only thing is you

think I do based on what I have posted on hear.

The VA Dr apointment time is 15 min. This means that the Dr has to have you

keep you on track. This means that you can't bring up many things. so things

can get missed sometimes one needs to do plan what they what to ask there

doctor. Many times I will ask my Dr something and he sometimes has to look

something up in my record so this gives less time for other things.

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Hopefuly Dr grim has sent information to Dr. Ted Goodfriend so he can look at my

VA record. I am not the only one that has no choice finding a local DR that will

help them.

>

> Too bad you have no choice.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Francis Bill

>

>

> In my case my doctor has told me if I have PA in wouldn't make any

> difference as he would still treat me the same way. So no point in retesting

> off meds to see if I do have it. So is he doing his job? If it wasn't for

> the internet I wouldn't have know that the meds I take inter fear with the

> tests or even what PA was. I still do not know if I have PA only thing is

> you think I do based on what I have posted on hear.

>

> The VA Dr apointment time is 15 min. This means that the Dr has to have you

> keep you on track. This means that you can't bring up many things. so things

> can get missed sometimes one needs to do plan what they what to ask there

> doctor. Many times I will ask my Dr something and he sometimes has to look

> something up in my record so this gives less time for other things.

>

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One can always choose any Dr they want in the US. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Nov 8, 2009, at 6:45 PM, Valarie <val@...> wrote:

Too bad you have no choice.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

In my case my doctor has told me if I have PA in wouldn't

make any difference as he would still treat me the same way. So no point in

retesting off meds to see if I do have it. So is he doing his job? If it wasn't

for the internet I wouldn't have know that the meds I take inter fear with the

tests or even what PA was. I still do not know if I have PA only thing is you

think I do based on what I have posted on hear.

The VA Dr apointment time is 15 min. This means that the Dr has to have you

keep you on track. This means that you can't bring up many things. so things

can get missed sometimes one needs to do plan what they what to ask there

doctor. Many times I will ask my Dr something and he sometimes has to look

something up in my record so this gives less time for other things.

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I had understood that u were going to the VA in Madison WI. I DONT know if he can access records outside this VA or if he wants to do that. I will ask him. Tiped sad Send form miiPhone ;-)May your pressure be low!CE Grim MDSpecializing in DifficultHypertensionOn Nov 8, 2009, at 7:07 PM, Francis Bill <georgewbill@...> wrote:

Hopefuly Dr grim has sent information to Dr. Ted Goodfriend so he can look at my VA record. I am not the only one that has no choice finding a local DR that will help them.

>

> Too bad you have no choice.

>

> Val

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Francis Bill

>

>

> In my case my doctor has told me if I have PA in wouldn't make any

> difference as he would still treat me the same way. So no point in retesting

> off meds to see if I do have it. So is he doing his job? If it wasn't for

> the internet I wouldn't have know that the meds I take inter fear with the

> tests or even what PA was. I still do not know if I have PA only thing is

> you think I do based on what I have posted on hear.

>

> The VA Dr apointment time is 15 min. This means that the Dr has to have you

> keep you on track. This means that you can't bring up many things. so things

> can get missed sometimes one needs to do plan what they what to ask there

> doctor. Many times I will ask my Dr something and he sometimes has to look

> something up in my record so this gives less time for other things.

>

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If the only way to get help is to go to VA in Madison WI. then I would go there. He will have no problem looking an my VA record. All VA medical records can be accessed from and any VA medical center. What I am hopeing is at this point his he will counsult with the VA doctors here. After he sees my record he can decide what is best to do.

If I need to go to Madison to get tested off meds I belive I would have to stay there for at least two weeks. The VA does provide some rooms for short term visits at least over night. not sure if any longer then that. They also help with traval pay.

Hopefuly Dr grim has sent information to Dr. Ted Goodfriend so he can look at my VA record. I am not the only one that has no choice finding a local DR that will help them. >> Too bad you have no choice.> > Val> > From: hyperaldosteronism> [mailto:hyperaldosteronism@

groups. com] On Behalf Of Francis Bill> > > In my case my doctor has told me if I have PA in wouldn't make any> difference as he would still treat me the same way. So no point in retesting> off meds to see if I do have it. So is he doing his job? If it wasn't for> the internet I wouldn't have know that the meds I take inter fear with the> tests or even what PA was. I still do not know if I have PA only thing is> you think I do based on what I have posted on hear. > > The VA Dr apointment time is 15 min. This means that the Dr has to have you> keep you on track. This means that you can't bring up many things. so things> can get missed sometimes one needs to do plan what they what to ask there> doctor. Many times I will ask my Dr something and he sometimes has to look> something up in my record so this gives less time for other

things.>

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If you have money to do so.

Too bad you have no choice.

Val

From: hyperaldosteronism [mailto:hyperaldost eronism@gro ups.com] On Behalf Of Francis Bill

In my case my doctor has told me if I have PA in wouldn't make any difference as he would still treat me the same way. So no point in retesting off meds to see if I do have it. So is he doing his job? If it wasn't for the internet I wouldn't have know that the meds I take inter fear with the tests or even what PA was. I still do not know if I have PA only thing is you think I do based on what I have posted on hear. The VA Dr apointment time is 15 min. This means that the Dr has to have you keep you on track. This means that you can't bring up many things. so things can get missed sometimes one needs to do plan what they what to ask there doctor. Many times I will ask my Dr something and he sometimes has to look something up in my record so this gives less time for other things.

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Actually, I showed her your article and that is the app. we decided it was time

for me to see the endo.

I'm hoping that I get the ARR today or tomorrow.

I doubled up on my K-dur this AM to see if somehow I can go beyond the

threshold for whatever is using up all my potassium. I may go get my potassium

checked at lunch. I have yet to go beyond 4.0 so I think I have good cushion.

Thanks again, I'll keep you posted...

Chantal

Spiro Rx filled, awaiting results (starting with 25mg)

> >

>

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Many Dr due provide free medical care. At least on some level. They also have to

have good support services to help them out. Sometimes it is the support

services that are the problem.

IF Dr's run free clinics They have to have a hospital that will support them.

All non profit hospital are suposed to provide free care. But it seems that this

free care can have limits.

I have see this happen to people close to me. Funds for many hospitals are

running out. With limited funding they do make choices on how they feel the

funds are spent.

>

>

>

>

>  

>

>

>

> Too bad you have no choice.

>  

>

> Val

>  

>

>

>

> From: hyperaldosteronism [mailto:hyperaldost

eronism@gro ups.com] On Behalf Of Francis Bill

>

>

> In my case my doctor has told me if I have PA in wouldn't make any difference

as he would still treat me the same way. So no point in retesting off meds to

see if I do have it. So is he doing his job? If it wasn't for the internet I

wouldn't have know that the meds I take inter fear with the tests or even what

PA was. I still do not know if I have PA only thing is you think I do based on

what I have posted on hear.

>

> The VA Dr apointment time is 15 min. This means that the Dr has to have you

keep you on track. This means that you can't bring up many things. so things can

get missed sometimes one needs to do plan what they what to ask there doctor.

Many times I will ask my Dr something and he sometimes has to look something up

in my record so this gives less time for other things.

>

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Don't take this fact but would like to get Dr Grims thoughts on this.

I have read that with PA that is untreated K isn't likey to be above 4. Maybe we

should do a true or false file.

> > >

> >

>

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