Need Some Advice

[Guest guest]

Kathy,

I answered your question on a post to Rae...see that answer

-- Re: [low dose naltrexone] Re: Need some advice

CINDY, WHAT HAPPENED TO HER? I HAVE NEVER HEARD OF ANYONE HAVING A SIDE EFFECT. I'VE TALKED TO A COUPLE HUNDRED PEOPLE ON THE THERAPY PERSONALLY AND READ DR MORISETTES REPORT WHO WAS A TOTAL SKEPTIC UNTIL HIS WIFE CLAIR WAS HELPED ONLY BY EAP.

[low dose naltrexone] Re: Need some advice

Hi Karin,My mom has ALS (not MS as I am assuming you have) so I'm not sure this applies but I thought I'd let you know I just arranged some physio for her which is currently all range of motion exercises. We will be adding strength excercises in the near future. We're starting these excersises once per week but will increase them if it's not too exhausting for mom.I have a question....mom has just been prescribed Baclofen and would like to know why it is "dreaded." Not sure if this should be off topic or not....Good luck Karin,Marina> Hi all,> I really need some sound advice as I am having an increasingly painful problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?> Karin

[Guest guest]

KARIN, HOW ABOUT MASSAGE THERAPY? I THINK BRENDA OR SOMEONE MENTIONED TO YOU BUT I AM A MASSAGE THERAPIST AND IT MAKES A HUGE DIFFERENCE. YOU SHOULD GET NEUROMUSCULAR MASSAGE. IT WAKES UP THE CENTRAL NERVOUS SYSTEM, INCREASES FLEXIBILITY, CIRCULATION, LOWERS BLOOD PRESSURE. ONE HOUR OF MASSAGE IS LIKE 8 HOURS OF SLEEP. THAT IS HOW REJUVENATING IT IS TO THE BODY AND THAT STATISTIC IS NOT SOMETHING MADE UP. IT WAS PUBLISHED IN 97 IN LIFE MAGAZINE. MASSAGE WAS ON THE COVER AND CHILDREN WITH CANCER WERE GOING INTO REMISSION VERSUS THE ONES WHO WERE NOT TOUCHED. MY MASSAGE IS LIKE YOU DOING PASSIVE EXERCISE. FIND SOMEONE WHO DOES WHAT I DO. A COMBINATION OF REFLEXOLOGY, NEURO, ACUPRESSURE, TRIGGER POINTS AND CHANGES YOUR MASSAGE EVERY TIME. WE ARE EVER CHANGING. NO TWO TREATMENTS SHOULD EVER BE THE SAME. YOU CAN TELL IF THE THERAPIST HAS THE RIGHT INTENT BECAUSE HER OR HIS HEART IS TOTALLY INTO THE WORK. KATHY

[low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

what do you think of cranio-sacral massage?

D

On 5/6/05, kathy lintzenich <mykittypaws@...> wrote:

> KARIN, HOW ABOUT MASSAGE THERAPY? I THINK BRENDA OR SOMEONE MENTIONED TO YOU

> BUT I AM A MASSAGE THERAPIST AND IT MAKES A HUGE DIFFERENCE. YOU SHOULD GET

> NEUROMUSCULAR MASSAGE. IT WAKES UP THE CENTRAL NERVOUS SYSTEM, INCREASES

> FLEXIBILITY, CIRCULATION, LOWERS BLOOD PRESSURE. ONE HOUR OF MASSAGE IS LIKE

> 8 HOURS OF SLEEP. THAT IS HOW REJUVENATING IT IS TO THE BODY AND THAT

> STATISTIC IS NOT SOMETHING MADE UP. IT WAS PUBLISHED IN 97 IN LIFE MAGAZINE.

> MASSAGE WAS ON THE COVER AND CHILDREN WITH CANCER WERE GOING INTO REMISSION

> VERSUS THE ONES WHO WERE NOT TOUCHED. MY MASSAGE IS LIKE YOU DOING PASSIVE

> EXERCISE. FIND SOMEONE WHO DOES WHAT I DO. A COMBINATION OF REFLEXOLOGY,

> NEURO, ACUPRESSURE, TRIGGER POINTS AND CHANGES YOUR MASSAGE EVERY TIME. WE

> ARE EVER CHANGING. NO TWO TREATMENTS SHOULD EVER BE THE SAME. YOU CAN TELL

> IF THE THERAPIST HAS THE RIGHT INTENT BECAUSE HER OR HIS HEART IS TOTALLY

> INTO THE WORK. KATHY

> [low dose naltrexone] Need some advice

>

> Hi all,

> I really need some sound advice as I am having an increasingly painful

> problem with this.

> I am confined to a wheel chair and my legs are becoming frozen in the

> sitting bent position,

> My sleep is very uncomfortable since I am stuck in one position all night

> long and unable to move. My legs are contracting all night long which is

> extremely painful, last night I got a total of 1 hr of sleep. I don't know

> if it's because of lack of sleep, but I'm really becoming depressed and

> feeling like I stand no chance of ever getting out of this damn chair or

> relieving some of the pain. When I bring this up to the neuro he wants me

> to get the Baclofen pump (the pills aren't working so why would I want to

> go this route). I have been taking Valerian, muscle ease, poppy seed with

> not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex

> w/no help. Does anyone have any ideas? Has anyone heard of anybody in as

> bad of condition who has gotten leg movement back and some range of motion?

> Karin

>

> ________________________________

>

[Guest guest]

DELORES, WE HAVE THE WORLD FAMOUS UPLEDGER INSTITUTE 15 MINUTES FROM WHERE I LIVE. JOHN UPLEDGER IS A PHENOMENAL CRANIAL SACRAL THERAPIST. HOWEVER, YOU MUST FIND SOMEONE EXTREMELY QUALIFIED. I SAY IF YOU CAN AFFORD TO ONLY HAVE ONE TYPE OF MASSAGE A WEEK, GET THE ALL OVER MASSAGE THAT WAKES UP THE NERVOUS SYSTEM. IF YOU CAN HANDLE DEEP DEEP TISSUE, I WOULD DO ROLFING. MOST PEOPLE CAN'T HANDLE THIS AT FIRST. I WOULD GET NEUROMUSCULAR FOR A YEAR AND THEN PROGRESS TO ROLFING. ANOTHER WORD FOR IT IS STRUCTURAL INTEGRATION. IF FINANCES ARE NO PROBLEM, GET THE CRANIAL TOO. THERE ARE SO MANY THINGS I WOULD DO FIRST THOUGH. COLONICS ARE ONE OF THOSE THINGS. BEING CONSTIPATED CREATES SUCH TOXICITY AND THE COLON IS THE SECOND BRAIN. HOPE THAT HELPS!! HEALTH AND LAUGHTER, KATHY

[low dose naltrexone] Need some advice> > Hi all,> I really need some sound advice as I am having an increasingly painful> problem with this.> I am confined to a wheel chair and my legs are becoming frozen in the> sitting bent position,> My sleep is very uncomfortable since I am stuck in one position all night> long and unable to move. My legs are contracting all night long which is> extremely painful, last night I got a total of 1 hr of sleep. I don't know> if it's because of lack of sleep, but I'm really becoming depressed and> feeling like I stand no chance of ever getting out of this damn chair or> relieving some of the pain. When I bring this up to the neuro he wants me> to get the Baclofen pump (the pills aren't working so why would I want to> go this route). I have been taking Valerian, muscle ease, poppy seed with> not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex> w/no help. Does anyone have any ideas? Has anyone heard of anybody in as> bad of condition who has gotten leg movement back and some range of motion?> Karin> > ________________________________>

[Guest guest]

thanks

On 5/6/05, kathy lintzenich <mykittypaws@...> wrote:

> DELORES, WE HAVE THE WORLD FAMOUS UPLEDGER INSTITUTE 15 MINUTES FROM WHERE I

> LIVE. JOHN UPLEDGER IS A PHENOMENAL CRANIAL SACRAL THERAPIST. HOWEVER, YOU

> MUST FIND SOMEONE EXTREMELY QUALIFIED. I SAY IF YOU CAN AFFORD TO ONLY HAVE

> ONE TYPE OF MASSAGE A WEEK, GET THE ALL OVER MASSAGE THAT WAKES UP THE

> NERVOUS SYSTEM. IF YOU CAN HANDLE DEEP DEEP TISSUE, I WOULD DO ROLFING. MOST

> PEOPLE CAN'T HANDLE THIS AT FIRST. I WOULD GET NEUROMUSCULAR FOR A YEAR AND

> THEN PROGRESS TO ROLFING. ANOTHER WORD FOR IT IS STRUCTURAL INTEGRATION. IF

> FINANCES ARE NO PROBLEM, GET THE CRANIAL TOO. THERE ARE SO MANY THINGS I

> WOULD DO FIRST THOUGH. COLONICS ARE ONE OF THOSE THINGS. BEING CONSTIPATED

> CREATES SUCH TOXICITY AND THE COLON IS THE SECOND BRAIN. HOPE THAT HELPS!!

> HEALTH AND LAUGHTER, KATHY

> [low dose naltrexone] Need some advice

> >

> > Hi all,

> > I really need some sound advice as I am having an increasingly

> painful

> > problem with this.

> > I am confined to a wheel chair and my legs are becoming frozen in the

> > sitting bent position,

> > My sleep is very uncomfortable since I am stuck in one position all night

> > long and unable to move. My legs are contracting all night long which is

> > extremely painful, last night I got a total of 1 hr of sleep. I don't

> know

> > if it's because of lack of sleep, but I'm really becoming depressed and

> > feeling like I stand no chance of ever getting out of this damn chair or

> > relieving some of the pain. When I bring this up to the neuro he wants me

> > to get the Baclofen pump (the pills aren't working so why would I want to

> > go this route). I have been taking Valerian, muscle ease, poppy seed with

> > not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex

> > w/no help. Does anyone have any ideas? Has anyone heard of anybody in as

> > bad of condition who has gotten leg movement back and some range of

> motion?

> > Karin

> >

> > ________________________________

> >

[Guest guest]

--- In low dose naltrexone , " .delores crosby " <decrosby@g...>

wrote:

> what do you think of cranio-sacral massage?

> D

>

=========

Cranio-sacral aggrevated my problem even more. The kind of massage therapy

Kathy refers to is best.

[Guest guest]

I thought about sending this to you directly, rather than through the web group, but then thought that maybe my comments might be helpful to others out there who might read them -- so here goes... I'm glad to suggest equipment that might help you. Take a look at this: http://www.therapymachine.com/. Of the 3 products on the top line, my machine (same that a friend has for sale) is on the left, and I strap my legs into it 2 hrs a day, for an hour each am and pm. It's not a bike, but a leg exerciser machine for a gal who no longer has enough strength in either of my legs to pedal any more. Do you? It won't make my legs stronger, but does keep the blood flowing to every part of them and makes my skin feel tingly when I come off the machine -- so I know it's working!

Don't allow your wacko bladder to isolate you at home, and get out there, go meet your friends for coffee at the mall or go to the movies -- whatever you used to do! I researched the Supra-Pubic Catheter option, then called my urologist and told him that's what I wanted. He first tried to talk me into an earlier step that he said most people do (an indwelling catheter in the urethra), but I wanted to go straight to a SPC in my abdomen, which has been problem free for me -- although I have had a couple of accidents, but not nearly as frequently as before I got it! The bag is velcroed to my calf for discrete releasing when it's convenient to me -- and the only 2 times when I've had a leak is because I wasn't paying attention and allowed my bladder bag to get too full, forcing my bladder to back-fill and force a leak through the urethra again. For this reason, I still wear a pad in my panties just in case, but I mostly never need it.

And this may sound strange to say, but the SPC hasn't affected my love life -- which I worried it would, hesitating on getting it. Instead, my hubby and I are as intimate now as we were before I had the SPC installed; but it has given me freedom from worry, and it can for you too. The only maintenance that's needed is a home-care nurse who comes to my home each month to replace the catheter; after I've ordered replacements kits, a new catheter, leg hose and leg bag from a local supplier, who charges my insurance company, shipping supplies on a standing monthly order. Maybe you could set this up for you too, to automate the monthly supplies process as much as you can? My hubby has Blue Cross insurance, and all these costs are 100% covered.

The only downside to mention is that I have to wear trousers year-round, which can be a pain on hot days; but I have lots of light pants to wear in the summer. My mother did me the biggest favor though when she came for a visit, and helped me hem down every pair of trousers I owned so that I could get as much fabric over the catheter as possible, and we had lots of fun working on the project together.

Rae

From: KVG [mailto:snoopylover_2000@...] Sent: Friday, May 06, 2005 2:05 PMradbower@...Subject: RE: [low dose naltrexone] Need some advice

Wow, you are saying all the things I am dealing with and feeling Thank-you!! Yes I would possibly be interested in the excerise bike. I am going to try out a different type of exceriser and if it works I'll be more into the bike your talking about. Please if you would tell me about your cathater. I don't get out because of this same bladder issue. I was told if I got one it would be infection city and it would be a huge mistake, is any of this true?

I take 4.5 mg LDN and I haven't noticed a big difference in spasms.

Thank-you so much for replying back to me.

Karin RaeAndDoug Bower <radbower@...> wrote:

Hi Karin. I too have PPMS and live in a w/chair, stiffening up at night like you. It's imperative that you get your legs MOVING. I've read the advice that you should get an exercise bike, but it sounds to me like you really need a powered exerciser that you strap your legs into, which then rotates them in a bike-type rotation -- forward for half an hour, then backwards for another half an hour -- maybe for a couple of sessions a day, if you have the time. You really need to step up your efforts to get more exercise. I have a friend near Seattle who is selling his wife's gear (including a PDLX leg exerciser for $600 -- sold new at $2,400). If you're interested, email me directly at radbower@....

I too am trying LDN as the last attempt at a peaceful night's sleep before going to a Baclofen pump. LDN 3mg for the first month has helped ease my spasms some, but I'm looking for even more/better results next month when I go up to 4.5mg. What dose are you taking? I'm also taking 80mg of tablet Baclofen daily, 20mg every 6 hrs -- the maximum oral dose recommended -- but other pump users say that only 5mg of Baclofen, fed directly into the spinal fluid, is all it takes to end spasms forever. If a 3 mo trial of LDN 4.5 isn't enough to end night spasms for good in me, I'll then go for the pump.

As for controlling an errant bladder, I LOVE the freedom that I'm experiencing after having a supra pubic catheter installed 18 months ago. Now, I'm in charge of my bladder again -- deciding when I want to go empty my discrete leg storage bag. Now I'm not afraid to go out in public again and participate in long meetings, and I'll be damned if I'm going to let my bladder keep me socially-isolated here at home... which was happening!

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of KVGSent: Thursday, May 05, 2005 1:57 PMlow dose naltrexone ; ms groupSubject: [low dose naltrexone] Need some advice

Hi all,

I really need some sound advice as I am having an increasingly painful problem with this.

I am confined to a wheel chair and my legs are becoming frozen in the sitting bent position,

My sleep is very uncomfortable since I am stuck in one position all night long and unable to move. My legs are contracting all night long which is extremely painful, last night I got a total of 1 hr of sleep. I don't know if it's because of lack of sleep, but I'm really becoming depressed and feeling like I stand no chance of ever getting out of this damn chair or relieving some of the pain. When I bring this up to the neuro he wants me to get the Baclofen pump (the pills aren't working so why would I want to go this route). I have been taking Valerian, muscle ease, poppy seed with not a whole lot of help. I am also on the dreaded Baclofen and Zanaflex w/no help. Does anyone have any ideas? Has anyone heard of anybody in as bad of condition who has gotten leg movement back and some range of motion?

Karin

[Guest guest]

I see you twice attempted to comment on this, but no comment came through. Try again, and don't hit send till you've typed a comment in the body of your email.

Rae

From: low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of usaispy@...Sent: Saturday, May 07, 2005 2:21 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Need some advice

[Guest guest]

brenda, i had cranial sacral once and it gave me an excruciating headache. i am certified in cranial sacral but noone ever asks for it and i don't enjoy the tediousness of it all. i like to make people feel better right away. i'm into that immediate gratification thing!!!! it is a really good thing how you have helped so many people in this group and all the time you have dedicated towards getting the work out . thanks brenda. may god bless you in many ways and i hope one of them is complete restoration of your health. kathy

[low dose naltrexone] Re: Need some advice

> what do you think of cranio-sacral massage?> D>=========Cranio-sacral aggrevated my problem even more. The kind of massage therapy Kathy refers to is best.

[Guest guest]

I'm a bit behind on reading my emails, so maybe someone else has already

answered this question. I'm gonna answer it anyway because it was something

in Tom's book that really made an impression on me.

From what I recall, Tom flew to Germany to see a doctor Nieper and get

intravenous Calcium EAP treatment. (Which I'm assuming is somewhat

different from the Calcium EAP pills you can order in this country.) He was

staying in a hotel near the clinic and he saw a woman who had been walking

just fine a few hours before leave the clinic barely able to walk at all.

So he did not get the treatment and came back home.

Anyway, that is my recollection of what's in the book. I haven't gone back

to check it out again, though I did mark it in my copy of the book. What I

read was enough to scare me away from that treatment, no matter how many

people swear that it's great stuff. It also sort of scares me away from

ordering the pills that you can get in this country. Perhaps I'm being

short sighted, but I do like being able to walk.

Vali

> Date: Fri, 6 May 2005 06:37:41 -0400

> From: " RaeAndDoug Bower " <radbower@...>

>Subject: RE: Re: Need some advice

>

>I haven't read the book, but can you give more specifics about what happened

>to the gal? I just ordered my first supply, but haven't got it yet...

>Rae

>

> _____

>

>From: low dose naltrexone

>[mailto:low dose naltrexone ] On Behalf Of

>Sent: Thursday, May 05, 2005 9:52 PM

>low dose naltrexone

>Subject: Re: [low dose naltrexone] Re: Need some advice

>

>

>

>Has anyone else read the passage in Tom B.'s book about the woman on CAL-EAP

>overseas?

>It has frightened me away from wanting to try it.

>

>

>

>

>

>-- Re: [low dose naltrexone] Re: Need some advice

>

>MARINA, I HAVE HEARD OF PEOPLE GETTING OUT OF WHEELCHAIRS AND PLAYING TENNIS

>AFTER CALCIUM EAP INJECTIONS AND ALSO GOAT SERUM. I KNOW A MAN WHO WAS IN A

>WHEELCHAIR FOR 12 YEARS WHO HAS BEEN LEADING A VERY ACTIVE LIFE AFTER

>CALCIUM EAP. HIS NAME IS DON DOBSON AND HE LIVES IN FT. LAUDERDALE FLORIDA.

>THE LIBRARY WILL GIVE YOU HIS NUMBER. HE IS WILLING TO TAKE TIME TO TELL

>OTHERS. KATHY

>

> [low dose naltrexone] Re: Need some advice

>

>Hi Karin,

>

>My mom has ALS (not MS as I am assuming you have) so I'm not sure

>this applies but I thought I'd let you know I just arranged some

>physio for her which is currently all range of motion exercises. We

>will be adding strength excercises in the near future. We're

>starting these excersises once per week but will increase them if

>it's not too exhausting for mom.

>

>I have a question....mom has just been prescribed Baclofen and would

>like to know why it is " dreaded. " Not sure if this should be off

>topic or not....

>

>Good luck Karin,

>

>Marina

>--- In low dose naltrexone , KVG <snoopylover_2000@y...>

>wrote:

> > Hi all,

> > I really need some sound advice as I am having an increasingly

>painful problem with this.

> > I am confined to a wheel chair and my legs are becoming frozen in

>the sitting bent position,

> > My sleep is very uncomfortable since I am stuck in one position all

>night long and unable to move. My legs are contracting all night

>long which is extremely painful, last night I got a total of 1 hr of

>sleep. I don't know if it's because of lack of sleep, but I'm really

>becoming depressed and feeling like I stand no chance of ever getting

>out of this damn chair or relieving some of the pain. When I bring

>this up to the neuro he wants me to get the Baclofen pump (the pills

>aren't working so why would I want to go this route). I have been

>taking Valerian, muscle ease, poppy seed with not a whole lot of

>help. I am also on the dreaded Baclofen and Zanaflex w/no help.

>Does anyone have any ideas? Has anyone heard of anybody in as bad of

>condition who has gotten leg movement back and some range of motion?

> > Karin

>

>

>

>

>

>

>

> <http://www.incredimail.com/index.asp?id=54475> Add FUN to your email -

>CLICK HERE!

>

> _____

>

>

[Guest guest]

, Amy & Gretchen

Thanks for your help. I keep telling myself that there's just one

more missing piece to the puzzle, but I guess there's a lot to go. At

least I can take the next step.

[Guest guest]

, I have been at this a year and still there are days I feel I am missing

something. Sometimes its like weight loss, you move mountains, and then other

days you move sand. The important thing is you keep moving. Just my 2 cents.

in Oceanside, CA

Fighting for one child, in hopes it helps another child.

Updated 4-11-05 to include...

~Doing the best I can with the hand I was dealt~

---------------------------------

Start your day with - make it your home page

[Guest guest]

Hi Karin,

Just looking back on my saved emails and have read yours....If you can, get a sun ancon chi machine....you can trial it for a couple of weeks then send it back if you find it doesn't help....it is worth a try...I love mine and apart from loosening up my legs it relaxes my whole body.....

Regards,

[Guest guest]

OK, so your cardiologist thinks that because you are 'nuts' you are having ,

I guess, arrythmias and low blood pressure? I kinda think HE is nuts, dont

you? It took me many years, many cardiologist to find out I had Lyme all

along. The one cardiologist who found my problem ( PVCs, second degree heart

block and for some reason, what you stated sounds familiar) and I saw for 5

years, dumped me the instant I told him I had Lyme, nice huh? Far to

many of us are told we are 'nuts', that we want to be ill , or are just

plain wrongly diagnosed. you have to research your symptoms, decide if you

think you have Lyme then go from there. You can go to lymenet.org and

research your diagnosis and see if they are Lyme related. Oh btw, has

anyone either tested you for Lyme or done a clinical diagnosis to see if you

have symptoms?

[ ] Need some advice

> hey everyone,

> I am still learning alot about lyme and am not sure of all the symtoms.

> Before I was diagnosed i was seeing a cardiologist for vaso vagel syncope

> due to low BP, well he doesn't beleive that lyme can cause these

> symtoms...and he thinks I should see a psych. Also I have been diagnosed

my

> neurologist that I have suedo(sp) seizures where i am metally aware of my

> surroundings and wide awake, but I am unable to communicate and sometimes

> lack motion in a limb...they usually last 21/2 hour to an hour.. Again, my

> neurologist doesn't think lyme can cuase this problem and he also wants me

> to see a psych...

> I am so confused as to what I should do....if all of my symtoms are

> sopposedly psych related then do I even have lyme?

>

> If anyone has had either of these symtoms and you know they are due to

> lyme...please let me know. I am totally confused and really feel like I

am

> going crazy.

>

>

>

>

> Questions and/or comments can be directed to the list owner at

-Owner

>

> Lyme Disease News continually updated from thousands of sources around the

net.

> http://www.topix.net/health/lyme-disease

>

>

[Guest guest]

I am not sure that my cardic problem, were cause by lymes but it sure did not

help as at the time I also had spinal problem, I still do yes every one refer

one to the psych. personal when one does not wish to deal with one problem it

easer to refer one to some one else. Bud

<christine@...> wrote:hey everyone,

I am still learning alot about lyme and am not sure of all the symtoms.

Before I was diagnosed i was seeing a cardiologist for vaso vagel syncope

due to low BP, well he doesn't beleive that lyme can cause these

symtoms...and he thinks I should see a psych. Also I have been diagnosed my

neurologist that I have suedo(sp) seizures where i am metally aware of my

surroundings and wide awake, but I am unable to communicate and sometimes

lack motion in a limb...they usually last 21/2 hour to an hour.. Again, my

neurologist doesn't think lyme can cuase this problem and he also wants me

to see a psych...

I am so confused as to what I should do....if all of my symtoms are

sopposedly psych related then do I even have lyme?

If anyone has had either of these symtoms and you know they are due to

lyme...please let me know. I am totally confused and really feel like I am

going crazy.

[Guest guest]

yes i have been diagnosed with lyme through IGeneX and it was confirmed by a

lyme specialist in Boston. My cardiologist does not believe the syncope is

from lyme becuase i am not have any arthymias...I only faint due to low

BP...but I am also hypogylcemic as well. My neurologist also knows that I

have lyme...and yet he still wants me to see a psych becuase seudo seziures

are usually caused by a mental disorder...like panic attacks.

I am trying to get as much info about lyme as possible bc i would like to

educate these Dr.s in case their wrong.

I admit, I am under stress and my sometimes get moody...but i don't believe

that I am depressed or that i am having panic attacks.

it's just so confusing bc these dr's are very well known in their fields so

it;s hard to know who is write and whose wrong...all I know is that I do

have lyme and they can cuase symtoms like the ones i have been having.

thank you so much for responding...I need all the advice i can get.

Love,

/Rodney writes:

[Guest guest]

Couple of things come to mind, .

First of all, like you, once I start eating certain foods (like cheese) I can't

stop. It's all or nothing. Seems more like food allergy/addiction than any

deficiency. Dairy's a problem for many people. Especially the trash the

supermarkets pass off as " cheese " ...hell, it's pasteurized (heated to the point

it kills most of the nutritional value, especially the enzymes).

And this comment almost read my mind:

" I am wanting to do parasite, colon, liver and kidney cleanses and am thinking

about Dr Shulze's products if you have any opinion about them. I was

concerned though about starting a colon cleanse since I have these colon

cramps and was wanting some reassurance from a doctor that it was OK

before starting it.

I did try a parasite cleanse a few months ago with ia in hopes of

resolving the colon cramps, but without luck. "

I think you should try a colonic, or two -- and if not that, or followed by,

exactly what you suggest above...parasite, colon, liver cleanses. I didn't get

any results with my first liver cleanse, but the following 5 have brought

hundreds of stones. I suspect you may have some encrusted junk trying to get

out, which will be facilitated by colonics. Followed by what you mentioned

above.

I'm not sure someone's supplements are the answer. Remember, they're SELLIING

their product. If he's so intent on addressing supposed deficiencies, have him

recommend specific nutrients which are available in common brands available

online or in stores, there are plenty of reputable brands to choose from --

Jarrow, Tyler, etc.

And if you haven't already, check out Ann Wigmore's books and site (google her

name). She followed much of what you're doing now, though she did stress

fermented foods like Rejuvelac, as well as wheatgrass. Read up on it.

Finally, I believe there's a raw food group at .groups.com. Those members

may have additional advice/experience. Also check CureZone.com

I'm learning to follow what my body tells me, it's usually more accurate than

some 'expert' hawking a line of supplements.

my 2 cents...

bill

Bill Asenjo, PhD, CRC

www.billasenjo.com

basenjo@...

(P/F) 319-351-1528

[Guest guest]

You just had surgery recently, right? I would

definitely go pester the doctor again and make sure there isn’t some sort

of infection or abscess or something from the surgery. You might simply need a

different antibiotic too. But go see the doctor. If you are not getting

better after a couple days of antibiotics, I don’t think they will think

of it as “pestering.” At the very least, call and see what they

say to do. I know a lot of times I can simply call my doctor, talk to his

nurse, tell them what is happening, and the doctor will call me back or say to

come in. I hope you feel better!!!!

K.

need some

advice

I have a slight problem. I've

been running a low fever (around 100) since thurs. night. The fever will

go up and down throughout the day. I'm on a second script of antibiotics

(avalox 400 mg). I'm having headaches again and when I tap my

forehead where it was numb it feels like I'm burning it with a curling

iron. I don't know if I should assume this is a virus along with my

bacterial infection in my head or not. I also have achy arms, and some

pain at times in my lower left back. I feel like a

hypochondriac. A week ago, when I first started taking my first

antibiodic, I felt great on the 2nd day, had tons of energy, painted like crazy

and no headache most of the day. And two days later, I started with the headaches

most of the day, and 7 days later started with the fever and lack of

energy. I've been in bed for 3 days, because my fever goes up when I do a

few things. I'm lost. Any suggestions or idea's. I'm sure I

should probably pester my doctor again but am so sick of being such a

problem.

Thanks for any thoughts on

this.

Tami in Wis.

[Guest guest]

Tami,

I worry that you are reacting to something in your environment. Have you tried the astilin spray antihistamine? I believe that Samters is accelerated by irritants.

Please look into it.

Pam

I have a slight problem. I've been running a low fever (around 100) since thurs. night. The fever will go up and down throughout the day. I'm on a second script of antibiotics (avalox 400 mg). I'm having headaches again and when I tap my forehead where it was numb it feels like I'm burning it with a curling iron. I don't know if I should assume this is a virus along with my bacterial infection in my head or not. I also have achy arms, and some pain at times in my lower left back. I feel like a hypochondriac. A week ago, when I first started taking my first antibiodic, I felt great on the 2nd day, had tons of energy, painted like crazy and no headache most of the day. And two days later, I started with the headaches most of the day, and 7 days later started with the fever and lack of energy. I've been in bed for 3 days, because my fever goes up when I do a few things. I'm lost. Any suggestions or idea's. I'm sure I should probably pester my doctor again but am so sick of being such a problem.

Thanks for any thoughts on this.

Tami in Wis.

--

[Guest guest]

This is probably really obvious, but keep in mind that it could be a

couple things simultaneously. I got a sinus infection, then I got

pneumonia, then I got mono. (Seriously, just turn around and walk the

other way.

I've been told that Avelox is the most effective on sinus stuff, so

if it's not clearing it up, I'd be concerned. Actually, as I'm

reading over your symptoms again, you might want to see a doctor and

make sure it *isn't* something like mono in addition to a sinus

infection.

Take care with the Astelin if you go with Pam's recommendation, okay?

I use it occasionally, but it does have a tendency to make me pass

out. You probably should test it at home first.

>

> I have a slight problem. I've been running a low fever (around

100) since thurs. night. The fever will go up and down throughout

the day. I'm on a second script of antibiotics (avalox 400 mg). I'm

having headaches again and when I tap my forehead where it was numb

it feels like I'm burning it with a curling iron. I don't know if I

should assume this is a virus along with my bacterial infection in my

head or not. I also have achy arms, and some pain at times in my

lower left back. I feel like a hypochondriac. A week ago, when I

first started taking my first antibiodic, I felt great on the 2nd

day, had tons of energy, painted like crazy and no headache most of

the day. And two days later, I started with the headaches most of

the day, and 7 days later started with the fever and lack of energy.

I've been in bed for 3 days, because my fever goes up when I do a few

things. I'm lost. Any suggestions or idea's. I'm sure I should

probably pester my doctor again but am so sick of being such a

problem.

> Thanks for any thoughts on this.

> Tami in Wis.

>

[Guest guest]

Hi,

I'm going back for a post op ct scan. If that shows nothing he wants to do a bone scan to see if I have a bone infection.

I'm taking the astelin again. I'm so gun shy, because it causes headaches, but will try it anyway. Temps have still been between 99 and 100, it's been 9 days now, except in the a.m., two days they started out at 96.6. Thanks Tami

Ps. he didn't do any blood tests for the fevers. I personally think I have a bone infection, but we'll see.

Re: need some advice

This is probably really obvious, but keep in mind that it could be a couple things simultaneously. I got a sinus infection, then I got pneumonia, then I got mono. (Seriously, just turn around and walk the other way. :)I've been told that Avelox is the most effective on sinus stuff, so if it's not clearing it up, I'd be concerned. Actually, as I'm reading over your symptoms again, you might want to see a doctor and make sure it *isn't* something like mono in addition to a sinus infection.Take care with the Astelin if you go with Pam's recommendation, okay? I use it occasionally, but it does have a tendency to make me pass out. You probably should test it at home first.>> I have a slight problem. I've been running a low fever (around 100) since thurs. night. The fever will go up and down throughout the day. I'm on a second script of antibiotics (avalox 400 mg). I'm having headaches again and when I tap my forehead where it was numb it feels like I'm burning it with a curling iron. I don't know if I should assume this is a virus along with my bacterial infection in my head or not. I also have achy arms, and some pain at times in my lower left back. I feel like a hypochondriac. A week ago, when I first started taking my first antibiodic, I felt great on the 2nd day, had tons of energy, painted like crazy and no headache most of the day. And two days later, I started with the headaches most of the day, and 7 days later started with the fever and lack of energy. I've been in bed for 3 days, because my fever goes up when I do a few things. I'm lost. Any suggestions or idea's. I'm sure I should probably pester my doctor again but am so sick of being such a problem. > Thanks for any thoughts on this. > Tami in Wis.>

[Guest guest]

Hi -

i'm sorry that your daughter is in pain and that you are frustrated

with the responses you are getting at Duke. We lived in NC for 12

years and my daughter was at the 'other option' for some of those

years and then

we switched to Duke for the remainder. I have to say I really loved

Duke and I thought we received the best care there (we are now onto

a new set of docs, due to moving.)

I wonder which doctor told you not to worry about your daughters

levels. I can maybe guess, but I don't want to name names in this

forum. I found the doctors there very willing to discuss and lay

out all the options. I can remember a specific incident where one

of the doctors spent about 20 minutes on the phone discussing

options and emphatizing with me. (this was when we were having a

complication).

My suggestion would be to call or talk to them again at your next

appointment. I found them to be really caring and I felt like they

listened to my concerns and questions and spent time listening and

talking at every appointment. Even the fellows, were really

knowledgeable and

capable. I thought that they were really aggressive in their

treatment, even more so than we kind of wanted. For us, their goal

was to get that joint to be completely normal, where as our doctor

now is willing to settle for a tiny bit of inflammation and

occasional pain.

I don't want to belittle your experience, because your feelings and

complaints are completly justified and everyone has a different

experience. But, maybe you can see if you can get your next

appointment with a different doctor or you can get a different

doctor to call and talk to you on the phone. I would be honest,

calm and explain everything that you said here.

I hope this helps. Feel free to email me if I can help you further.

Anne

>

> Kaylee has been complaining of pain in her elbows, neck and back

the

> past few weeks. i called to Duke and spoke to the rheumy nurse and

> she said not to be worried since she had a slight cold,nothing

> major. she still has a cough, but not really a cold. I still don't

> know about her levels either. Whenever i ask the rheumy says it's

> not for me to worry about, but it is, this is my child. I need to

> know where i can find the normal levels for everything and when to

> worry about them. I also need to know if i need to really worry

> about these new aches and pains. I am having to massage her legs

> during the night, which the rheumy says they don't understand

> either. I have read in a recent KGAT newsletter that these kids

> don't have to be in pain due to new drugs available and that

rheumys

> tend to treat the disease and forget to treat the pain at the same

> time unless through NSAIDS, which Kaylee had to be taken off

> Naprosyn due to stomach problems and not takes tylenol up to 4

times

> a day. She also takes .5 methotrexate injection once a week and 2

> Enbrel .3 injections twice a week along with folic acid and

> prevacid. What should I do? WE only have so many choices in NC and

> we have already been the other route and it didn't work. Can you

> guys please help me? I am at the end of my rope?

>

> Thanks for any help

>

> and Kaylee, 3 1/2 poly

>

[Guest guest]

Hi, . First let me say I am surprised a dr at Duke would be rather

dismissive. My son's first rheumy is now at Duke and she was the one who

told us that the goal is always to get these kids pain free. She is the

one who reminded me that Tylenol really does nothing for the

inflammation and pain for these kids. She put my son on Celebrex right

away when I explained that got horrible stomach aches from other

NSAIDs. He luckily had no stomach issues once he was on Celebrex. I am

so disappointed that it sounds like which ever dr you are seeing is

being dismissive of your concerns. That was certainly not the case for

us when we saw the dr we saw when she was here.

About the levels, did the dr say it was nothing to be concerned about in

that they were fairly normal levels or did the dr mean that you don't

need to know what they are? If it is the second one, I would say ok, but

I still would like to know what they are. You have the right to know.

As to the pain Kaylee is experiencing, it could be increased if she is

sick, but if it is going on for a while I would explain that you would

like to know how to make it lessen or go away. You could also insist on

talking to the dr. The nurse can be very helpful I am sure, but in this

case she is not and you need to speak with the dr. Even if they act like

it is not convenient or a pain, I would stick to my guns and politely

ask to speak with the dr. You are, after all, paying these people and

your daughter deserves quality care. I know it is hard to stand up to

drs, but they are just people too and just because they may know more

book wise, you know more about your child than they do. You are the only

voice your child has and she needs to get out of pain. Let the dr know

she is having pain, where and to what intensity. Be prepared when you do

talk to the dr and be firm. I'll get off my soapbox now, but remember

you are your daughter's advocate. You are obviously knowledgeable about

the disease by the research it sounds like you are doing and you can

speak for your child. Good luck to you, Michele ( 18, spondy)

Need some advice

Kaylee has been complaining of pain in her elbows, neck and back the

past few weeks. i called to Duke and spoke to the rheumy nurse and

she said not to be worried since she had a slight cold,nothing

major. she still has a cough, but not really a cold. I still don't

know about her levels either. Whenever i ask the rheumy says it's

not for me to worry about, but it is, this is my child. I need to

know where i can find the normal levels for everything and when to

worry about them. I also need to know if i need to really worry

about these new aches and pains. I am having to massage her legs

during the night, which the rheumy says they don't understand

either. I have read in a recent KGAT newsletter that these kids

don't have to be in pain due to new drugs available and that rheumys

tend to treat the disease and forget to treat the pain at the same

time unless through NSAIDS, which Kaylee had to be taken off

Naprosyn due to stomach problems and not takes tylenol up to 4 times

a day. She also takes .5 methotrexate injection once a week and 2

Enbrel .3 injections twice a week along with folic acid and

prevacid. What should I do? WE only have so many choices in NC and

we have already been the other route and it didn't work. Can you

guys please help me? I am at the end of my rope?

Thanks for any help

and Kaylee, 3 1/2 poly

[Guest guest]

Unless you are experiencing some other symptoms other than just being worried about the v/l increase, you are probably fine- especially since you said all other blood work is fine...the energy drain could very well be stress induced from just going thru the experiences you describe, imhobugglysmom <tabam@...> wrote: Just got some bad news and need some advice......After being taken off treatment in March of this year. I went back on my herbal treatment which worked great before this time thru

treatment...My viral load had gone up to 65,000 when the dr pulled the plug on treatment. I just had my profile which is fine done with some other blood work which was also fine but my viral load now is 991,000...Does anyone know of any other herbal antivirals besides ashwaganda, cats claw,bupleurum, that i can add to my mixture? i'm at 2 parts antivirals to 1 part dandelion root, ginseng, turmeric and alfalfa.....I can feel the energy draining out of me.....Any and all suggestions are appreciatedTerri jwf2 W Fraser MWM Associates, LLCCell: (910) 200-2020jwf2@...

[Guest guest]

A good question about the alcohol. I recently had to give up alcohol due to how conjested I get when I drink. It seems to be mostly beer or white wine which I enjoy the most.

What alcohol does not bother people?

TomSee what's free at AOL.com.