New Member

[Guest guest]

AMY,

Welcome to the group, No clue on the Pumpkin like grandma makes.

Kirk

[Guest guest]

Hey Amy, glad to meet ya!

-

[Guest guest]

Hi Jannette... The group is a way of us sharig our programs as well as a

few other things.We help keep each other inspired with our stories of

triumph , and lift each other up on those days of dissapointment.On the

days you want to quite, you'll find a message from one of your new

friends here that brings you higher than ever.They can challenge you to

climb all sorts of mountains and the be there to help getting over a

hill...Good luck on your challenges ...TERESA

LIFE IS 10% OF WHAT HAPPENS TO YOU AND 90% HOW YOU RESPOND TO IT.

[Guest guest]

,

The book gives a list of foods that you can have. Do none of them sound

good to you? They are just the basic food. You can jazz them up with spices

and things. There is such a large variety of good foods that ore OK to eat,

I'm not sure what you mean when you want to know what else there is to eat?

This will be a bit of a change for beginners because most people's diet

consists of large amounts of carbohydrates and high sugar foods. The human

body was not intended to process this type of diet. Also processed foods are

hard on the digestive system. Think of whole foods in their natural state.

Lean meats, fresh vegetables, whole grains, fresh fruit, low fat dairy,

water, water, water. Sounds delicious to me. Let us know what you are

eating and we'll give you ideas on how to make it more appealing to your

pallet.

By the way, what is MSM?

~Laury

[Guest guest]

Welcome !!!

The CO,

Nic

[Guest guest]

Suzanne:

I'm , mom to who has been off treatment for 3 years now for

High-Risk ALL. was started on IVIG during treatment and has since

been switched back and forth on and off.

I have about a million questions for you. Where are you from? What do the

oncologists say about this? (Probably not anything concrete if my guesss is

right!) What protacol is he on? How did the doctors determine his

defeciency? When do the oncologist think he should be re-tested for his

immunoglobulin levels?

To answer your questions, yes, keep him on the IVIG for at least 6 months

following chemo. This way you can make sure he's going to be covered while

his bonemarrow is recovering from the chemo. When the oncologists feel that

he has had a suffecient recovery--with that was 6 months post-chemo

and his WBC and Diff. were staying at a steady level--they had him come off

the IVIG to see if his IgG and sub-classes had come back. Also, they had to

titer him for the vaccinations he had received prior to chemo to see if he

was adequetely covered--which he is not; different story!.

I only know of one other person person who has a child who has been

diagnosed with a PID and who has Leukemia. It really helps to talk with

someone who has gone through or is going through a lot of the same

experiences.

Welcome to the group and I hope to hear more from you.

-mom to --dysgammaglobulinemia; Leukemia-in remission

Re: File: PedPIDemaillist.txt

>

> I'm a parent of a child who has been receiving IVIG monthly for the past

> year and a half. My child also is being treated for leukemia. His doctors

> have indicated that it's impossible to identify whether the immune

> deficiency is a result of chemo or preceded his cancer, but that it likely

> preceded the cancer. At any rate, he's finishing up his cancer treatment

> protocol in the 6 months and there's some disagreement as to whether the

> IVIG should be continued beyond treatment. I don't know very much about

> immune deficiencies and am interested in learning more through hearing

> about other's experiences

>

>

> ---------------------------

[Guest guest]

- I'd like to welcome you to the group. I hope your son is feeling

well and that the IVIG is helping. How was he diagnosed? Do you see a

pediatric immunologist? What IVIG product works best for him? I also have

a 7 yr old but she's not my PID child. The group message archives can be

found at /messages/PedPID and can also be searched.

Please feel free to jump right in with any questions or comments you may

have.

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

Hi ,

I am the mother of a 7 year old boy who has CVID. He was diagnosed at a

year of age but started on IVIG at 2 1/2 years after some serious illnesses.

They were hoping he would out-grow his condition. I wanted to join the list

so I could correspond with others who deal with the same problems as us.

Medeiros

[Guest guest]

Welcome, and Dawn! My son has just started getting the IVIG. So far so

good! I hope that you enjoy this site as much as I do. I have found it to be

a priceless source of information and most importantly...support.

Diane, Mom to Kody, age 4, IgG sub. def., steroid dependent asthma

[Guest guest]

Ray,

Thanks for the welcome. Cameron has not yet started the Clindomycin, but

it looks like it may begin soon. Fortunately for Cameron, he can now swallow

a pill form so the taste and smell will not be an issue. Cameron learned

very young how to swallow a pill cuz he hates taking all the meds. It sounds

as if Autumn does not have a port, have they ever considered one? It might

make it easier on her instead of being stuck so many times. The migraines

began about 1 yr ago and are all related to his sinus pressure. It is tough

to watch him have a migraine and there is nothing I can do that makes it

better. Any suggestions?

Hope Autumn does not have to make the #3 trip...Keeping my fingers crossed

...Mother of Cameron

[Guest guest]

Thanks for the info. Cameron has been tried on Periactin 4mg and has no

success with it. We have discussed making an appt with a neurologist, but

the first drug of choice is periactin and it does not work, so the Immuno

said that visit may not be worth our time at this point. For now we resort

to the more traditional ways Motrin,ice and sleep. It at least will lessen

the pain after waking and Cameron can tolerate it than. I have heard a lot

of negative things about IVIG infusions. Does it make a difference in the

amount of infections? Has tried Clindomycin before? I am looking for

info about the side effects with it. You mentioned the long trip to get the

infusions, have you ever thought about a home infusion nurse? That way,

could still enjoy the comfort of his own surroundings and get the IVIG at the

same time. I know some health insurance's won't pay for it, but definitely

worth looking into.

Good luck

Mother of Cameron 9 IGg 2 & 3 deficiency, chronic sinusitis and migraines

[Guest guest]

Welcome to the group! My kids both have IgA deficiency diagnosed at one

year of age as well. Looking forward to talking with you!

Grace Caroline 8/14/97 (IgA deficieny, mild asthma, sinus issues, severe

allergies)

Caelan 8/26/99 (IgA deficiency, asthma, chronic cough issues/resp

infections, severe life threatening food allergies, some environmental

allergies, recovered from severe anemia and we think over reflux!)

>

> /group/PedPID

>

> RE: File - PedPIDemaillist.txt

>

> I am the parent of a 5 year old daughter who was diagnosed with IGA

> Deficiency at 1year of age and asthma at 2 months of age. I just found

> your site and would like input from other parents going through the same

> things. Thank you, rn4premies

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

[Guest guest]

Hi Cristey, welcome!

From posts I've read here over the years, " yes " those could be side

effects of her medication. Medication affects each person

differently, you know.

How much Prozac and Klonopin is she on right now?

How much inositol and the rest?

Did you begin these later than the Prozac or at the same time?

I would let the doctor know about these possible side effects. He

might want to adjust dosages or he might suggest waiting another

couple weeks or so to see if the behaviors fade away as her body

adjusts to the medications. With medication, you have to build up to

a therapeutic dose and maintain that dosage for a few weeks to see

how things will work. Between the " building up " and then

maintaining, it takes time. Some people see changes much more

quickly, others have to wait 8 weeks or so. Don't know the Prozac

dosage. My son is on Celexa. He began at 10mg and we've built him

up to 50mg (a bit more if a week seems stressful). He's been on

Celexa since last August and, luckily, no bad side effects other than

being extremely tired in the afternoons. He takes naps even on the

weekends! (he's 15) Celexa was the first medication he's tried.

Prior to that we used inositol all thru middle school.

So - you are not wasting your time, all this just takes " time " to

take effect!

single mom, 3 sons

, 15, with OCD, dysgraphia and HFA/Aspergers

> I'm new to the list. My husband and I have six children ages 6mos-

17yrs

> and live in Texas.

>

> OCD has been a curve ball--a sinking curve ball!!

> My spunky 12 yr old daughter was diagnosed with ocd in early May

after

> experiencing repetitive 'bad' thoughts about God. She has been on

Prozac

>

[Guest guest]

She is 12 yrs, weighs between 65-70 lbs and is now on 20mg Prozac and 1mg

Klonopin. Right now she's on 4.3grams inositol daily, 1 T flax seed oil,

1 1/2 t. Ambrotose and some calcium, magnesium, and Bcomplex daily. She

started Prozac and Klonopin four weeks ago and we just started the other

stuff this weekend.

She was on 10mg Prozac for one week, then went up to 20mg, so she has

been on 20mg for three wks.

Tell me about your experience with inositol. Dosage? Do you still use

it? Did you feel like it worked?

Bless you!

cristey

On Thu, 03 Jun 2004 00:47:21 -0000 " "

writes:

> Hi Cristey, welcome!

> From posts I've read here over the years, " yes " those could be side

>

> effects of her medication. Medication affects each person

> differently, you know.

>

> How much Prozac and Klonopin is she on right now?

>

> How much inositol and the rest?

>

> Did you begin these later than the Prozac or at the same time?

>

> I would let the doctor know about these possible side effects. He

> might want to adjust dosages or he might suggest waiting another

> couple weeks or so to see if the behaviors fade away as her body

> adjusts to the medications. With medication, you have to build up

> to

> a therapeutic dose and maintain that dosage for a few weeks to see

> how things will work. Between the " building up " and then

> maintaining, it takes time. Some people see changes much more

> quickly, others have to wait 8 weeks or so. Don't know the Prozac

> dosage. My son is on Celexa. He began at 10mg and we've built him

>

> up to 50mg (a bit more if a week seems stressful). He's been on

> Celexa since last August and, luckily, no bad side effects other

> than

> being extremely tired in the afternoons. He takes naps even on the

>

> weekends! (he's 15) Celexa was the first medication he's tried.

> Prior to that we used inositol all thru middle school.

>

> So - you are not wasting your time, all this just takes " time " to

> take effect!

>

>

> single mom, 3 sons

> , 15, with OCD, dysgraphia and HFA/Aspergers

>

>

>

> > I'm new to the list. My husband and I have six children ages

> 6mos-

> 17yrs

> > and live in Texas.

> >

> > OCD has been a curve ball--a sinking curve ball!!

> > My spunky 12 yr old daughter was diagnosed with ocd in early May

> after

> > experiencing repetitive 'bad' thoughts about God. She has been on

>

> Prozac

> >

>

>

>

>

[Guest guest]

Hi Cristey,

I just looked at side effects for Prozac at the OCD Foundation

website. Here's a portion of it:

WHAT ARE FLUOXETINE'S SIDE EFFECTS?

Most children are able to take fluoxetine without experiencing any

side effects. Occasionally, children can develop an upset stomach, a

rash, a headache, jitteriness, or insomnia on fluoxetine. In

addition, like all the anti-OCD medications, fluoxetine can lead to

changes in some children's behavior. Called behavioral side effects

(BSEs), these are impulsive, silly, or defiant and aggressive

behaviors (see description later in this guide). BSEs may be related

to the dose of medication that the child is taking, as well as the

child's age.

Here's a link to the page. It's under the Children's Medications at

the site if the link doesn't work:

http://www.ocfoundation.org/ocf1060a.htm

The " impulsive, silly... " sounds a bit like what your daughter is

experiencing.

Inositol worked great for . He used it alone, no SSRI. So I

had him on about 13.5 grams at his worst, then on around 10 grams for

the other. He never wanted to try a prescription medication back

then. But by 8th grade I felt like maybe the inositol was pooping

out and told him, again, that perhaps he might get greater benefits

from a prescription medication. His OCD was " still there " with

inositol but manageable, still with some waxing & waning over those

years. Although at one time he was doing so well I had to ask him if

OCD still was " there. " He said it was. Anyway, so far I don't see

better benefit OCD-wise from the Celexa than when he was on

inositol. We could have upped the inositol dosage some more, but I

did want to see how an SSRI would do for him. I've thought about

adding back a bit and maybe giving him 1-4 grams of inositol to sort

of boost the SSRI effect to see if OCD wanes a bit more. We'll see.

Inositol is like any " med " though, might not have any effect for some

people. could tell a change when he was on it though, so

that was good. Just don't want to " over-serotonin " him!

Just my opinion, but I'd give it a good 2 months of trying (the

inositol and the other) before I would think that it's " not " helping

any. I'd stay at the current inositol dose too, since your daughter

is on an SSRI and there is still room to move the Prozac up if needed

(or even if switch to another med to try).

Keep us updated on everything! Again, I hope the side effects wear

off soon!

>

> She is 12 yrs, weighs between 65-70 lbs and is now on 20mg Prozac

and 1mg

> Klonopin. Right now she's on 4.3grams inositol daily, 1 T flax

seed oil,

> 1 1/2 t. Ambrotose and some calcium, magnesium, and Bcomplex

daily. She

> started Prozac and Klonopin four weeks ago and we just started the

other

> stuff this weekend.

> She was on 10mg Prozac for one week, then went up to 20mg, so she

has

> been on 20mg for three wks.

> Tell me about your experience with inositol. Dosage? Do you still

use

> it? Did you feel like it worked?

> Bless you!

> cristey

>

[Guest guest]

Hi Cristey, and welcome. I just wanted to say that yes the impulsivity etc.

and the poor appetite may be a side effect of the medication. There is a

good chance these will fade away as her body acclimates to the meds.

I'm sorry I don't have much input about the supplements you have your

daughter taking. Of the three you mention, my child does occasionally take

an EFA blend but I have not noticed any effect one way or another on her OCD

symptoms. I plan to start inositol soon since school was out last Friday,

to see if it may reduce her severe nail biting. I know the effective dose

of inositol is quite high, several grams I believe.

My daughter 10 takes Zoloft, and has completed a course of CBT/ERP which

perhaps reduced her symptoms even more than the SSRI did. Is your daughter

doing CBT/ERP? Apart from this, a major thing for my child is giving her a

daily allergy med--we use Claritin and sometimes Benedryl at night--because

her symptom level and tics seem tied in somehow with her environmental

allergies, which in themselves are not that severe. Also for awhile early

on we avoided certain foods that seemed to really set off her tics--oranges

for example--although now that she's a bit older these no longer seem to

affect her so dramatically. If your daughter has allergies or food

sensitivities you might check into this.

In any case you may want to start supplements one at a time and on a gradual

schedule just so you can tell what is working and what may be prompting side

effects. If she has just been on the SSRI for a month she is probably not

yet experiencing all the effect she will. You might want to go more slowly

adding supplements so you don't muddy the water in trying to evaluate the

Prozac and Klonopin.

Take care,

Kathy R. in Indiana

----- Original Message -----

> I'm new to the list. My husband and I have six children ages 6mos-17yrs

> and live in Texas.

>

> OCD has been a curve ball--a sinking curve ball!!

> My spunky 12 yr old daughter was diagnosed with ocd in early May after

> experiencing repetitive 'bad' thoughts about God. She has been on Prozac

> and Klonopin for four weeks. Her anxiety level is under control, but the

> thoughts are still there though she has become apathetic to them.

> I'm seeing her behavior changing...impulsive, silly, uninhibited...very

> unlike her. Her appetite is poor. Are these possible side effects to

> medication?

> I started her on inositol, flax seed oil and ambrotose. Does anyone have

> any experience with other natural remedies? Am I wasting my time and

> money? Dosages? My learning curve is vertical, so thanks in advance for

> your patience.

>

> Many thanks,

> cristey

[Guest guest]

Kathy, Thanks for the advice. As a matter of fact, the symptoms have

leveled off. My daughter is doing CBT, but has been so convinced that

her bad thoughts are a spiritual condition taht she hasn't been a willing

a participant to therapy. Just a couple of days ago, she joined the kids

support list and has found a couple of sweet gals who've experienced the

same 'thought's. What a God send! She now realizing that she has a

medical condition. I'm hopeful that she will be more receptive to

therapy now and do her homework with alacrity.

Thanks for the encouragement and advice...keep it coming!

cristey

On Sun, 6 Jun 2004 00:56:40 -0500 " Kathy "

writes:

> Hi Cristey, and welcome. I just wanted to say that yes the

> impulsivity etc.

> and the poor appetite may be a side effect of the medication. There

> is a

> good chance these will fade away as her body acclimates to the

> meds.

>

> I'm sorry I don't have much input about the supplements you have

> your

> daughter taking. Of the three you mention, my child does

> occasionally take

> an EFA blend but I have not noticed any effect one way or another on

> her OCD

> symptoms. I plan to start inositol soon since school was out last

> Friday,

> to see if it may reduce her severe nail biting. I know the

> effective dose

> of inositol is quite high, several grams I believe.

>

> My daughter 10 takes Zoloft, and has completed a course of CBT/ERP

> which

> perhaps reduced her symptoms even more than the SSRI did. Is your

> daughter

> doing CBT/ERP? Apart from this, a major thing for my child is

> giving her a

> daily allergy med--we use Claritin and sometimes Benedryl at

> night--because

> her symptom level and tics seem tied in somehow with her

> environmental

> allergies, which in themselves are not that severe. Also for awhile

> early

> on we avoided certain foods that seemed to really set off her

> tics--oranges

> for example--although now that she's a bit older these no longer

> seem to

> affect her so dramatically. If your daughter has allergies or food

> sensitivities you might check into this.

>

> In any case you may want to start supplements one at a time and on a

> gradual

> schedule just so you can tell what is working and what may be

> prompting side

> effects. If she has just been on the SSRI for a month she is

> probably not

> yet experiencing all the effect she will. You might want to go more

> slowly

> adding supplements so you don't muddy the water in trying to

> evaluate the

> Prozac and Klonopin.

>

> Take care,

> Kathy R. in Indiana

>

> ----- Original Message -----

>

>

>

> > I'm new to the list. My husband and I have six children ages

> 6mos-17yrs

> > and live in Texas.

> >

> > OCD has been a curve ball--a sinking curve ball!!

> > My spunky 12 yr old daughter was diagnosed with ocd in early May

> after

> > experiencing repetitive 'bad' thoughts about God. She has been on

> Prozac

> > and Klonopin for four weeks. Her anxiety level is under control,

> but the

> > thoughts are still there though she has become apathetic to them.

> > I'm seeing her behavior changing...impulsive, silly,

> uninhibited...very

> > unlike her. Her appetite is poor. Are these possible side

> effects to

> > medication?

> > I started her on inositol, flax seed oil and ambrotose. Does

> anyone have

> > any experience with other natural remedies? Am I wasting my time

> and

> > money? Dosages? My learning curve is vertical, so thanks in

> advance for

> > your patience.

> >

> > Many thanks,

> > cristey

>

>

>

>

[Guest guest]

Welcome to the group. It sounds like you have had your share

of side effects. Hope all goes well for you in the future.

Ed

> I've had some serious problems with Statins I wanted to add this

post so others can hear my story.....I have taken Lipitor, Pravachol,

and Zocor and had very adverse affects.....My doctor acknowledged it

and changed me each time and at the present time I am taking

Zetia....which seems to be working without the adverse symptoms...My

doctor told me that he has had other patients that have had

reactions also....A friend of mine recently also had trouble with

Lipitor....So I personally know that there are serious side effects

with these drugs in some people....

>

> I had joint pain and severe muscle cramps all over my

body......difficulties with short term memory......among quite a few

less drastic symptoms such as frequent bathroom trips...I never had

the thick colored urine but I met a lady that did... I suffered a lot

of pain and aches and would have muscle spasm's so bad they would

just double me up... Since I am checked every 3 months for liver

functions because of my cancer history my symptoms were confirmed to

be comming from the Statins I was taking.

>

> They tell me that the Zetia will not cause this problem..When I

changed from zocor to the others ....with a time laspe between

them ...it was only a short time before the symptoms would

return....So far I haven't had symptoms with the Zetia but often

wonder...Is anyone familiar with Zetia or had problems with it?

>

>

> D-Ô¿Ô¬O

[Guest guest]

Hi! I am related to you for I am confused in California:-)

I've not heard of that.....but will check it out.

Sad news for me.I have taken policosanol for 4 days now....(I think) and am

feeling like CRAP. My sinus's are raw, and I had a bad nose bleed last

night.(after I put in some antibiotic drops in my eyes which are also

inflamed. Today I was in a fog.....could even finish a sentence. So, tonight

is my first night OFF policosanol.

Mine is Source Natural.....a good brand, and has all three things in it.

I started these symptoms on the lipitor...and they have worsened......I

amnot having bad dreams anymore tho;-)

I am confused AND frustrated:-) I am thinking of buying Dr Sinatras' brand.

Jill

[Guest guest]

It a small world, you just might be

sorry to hear you are feeling so crappy, but i guess that's why we

are here to help each other and share knowledge.

I had terrible dreams on Zocor. My doc thought I was nuts and he had

me questioning my sanity. After being asleep about 1-2 hours I would

wake from the most vivid dreams heart racing and sweating. That

stopped after I stopped taking the pills.

I dont want to take the Crestor and had just got the June alive mag

and found this product almost like it was the answer staring me in

the face.

If this does not pan out I will try the

policosanol.

Good night

Bonnie

In TakingLipitorAndHateIt , " Jillie " <anssepha@s...>

wrote:

> Hi! I am related to you for I am confused in California:-)

> I've not heard of that.....but will check it out.

>

> Sad news for me.I have taken policosanol for 4 days now....(I

think) and am

> feeling like CRAP. My sinus's are raw, and I had a bad nose bleed

last

> night.(after I put in some antibiotic drops in my eyes which are

also

> inflamed. Today I was in a fog.....could even finish a sentence.

So, tonight

> is my first night OFF policosanol.

> Mine is Source Natural.....a good brand, and has all three things

in it.

> I started these symptoms on the lipitor...and they have

worsened......I

> amnot having bad dreams anymore tho;-)

> I am confused AND frustrated:-) I am thinking of buying Dr

Sinatras' brand.

>

> Jill

[Guest guest]

Jill, I am confused with all of this and I have never felt as bad as I

have with just ONE of the policosanol pills. (well yes, I have with

the Lipitor),but that was muscle pain and so on. After taking just one

pill two days ago,it started, my toes became numb in one foot, My

vision got fuzzy. The next day my stomach was so upset ALL day long.

Today I could barely see in the morning,the fuzziness went away,but my

stomach feels still yuck still, my kidney or something in my back is

hurting, I feel better now but not all together well. But,the muscle

pain was not worse. So, I am so confused about getting the policosanol

pill made of sugar cane. I thought that this one pill I took the other

day, just completed the process that Lipitor has started........ugh.

And now I have to read up on lyme disease somewhere since my husband

had a tick and now has a rash and I hope he does not get sick. It seems

to be a very bad disease,that lyme disease.........he said he got up

this morning and lost his equilibrium for several hours,I thought he

took a Lipitor by mistake,not funny,but if both of us are sick at the

same time, the grils are going to run the house,or us OUT of the house.

(I guess, A LOT of research needs to be done by me before getting a

supplement. Now me, I saw cholesteral lowering and ran out to get not

one but two bottles of the policosanol,which of corse I won't be using.

I cannot fin any with JUST sugar cane and I wonder if that would make

me sick. God help me if I get sick and need to take medication

someday,there seems to be NOTHING that does not make me sick.)

Jillie wrote:

Hi! I am related to you for I am confused in California:-)

I've not heard of that.....but will check it out.

<<<<Sad news for me.I have taken policosanol for 4 days

now....(I think) and am

feeling like CRAP.

Jill>>>>

-- cbtanner@... ()

[Guest guest]

.........

I know I for one HAVE to be diligent and get my weight down.......AND I have to be diligent and exercise:-(

I HAVE TO.

I do not like taking stuff either and had high hopes on the policosanol.

Like I said, I had only taken it for 4 days..but...I felt like I had doubled my lipitor dose:-) not funny! LOL

I did have blurry vision.....but today...ugh......I felt out of the loop. Lightheaded.....we had friends visiting, and I swear I lost my train of thought several times. It got pretty embarrassing.......having to ask, "now what was I talking about?"

The only thing that got better after the lipitor was the unsettling dreams stopped, and my shoulder pain went away. So...........I don't know.......I have sent for Dr Sinatras meds before, and am thinking about doing it again. At least he is a cardiologist and studies this stuff.

I hope you feel better soon. Evidently we are just very sensitive.

Jill

Re: New member

Jill, I am confused with all of this and I have never felt as bad as I have with just ONE of the policosanol pills.

[Guest guest]

The most common Policosanol is made only from sugar cane so I find it

strange that you cannot find one.

Warren

> > feeling like CRAP.

> > Jill>>>>

> >

> >

> >

[Guest guest]

, I'm terribly sorry to hear that you are still so ill from

the sampling of one policosanol pill. That is incredible.

Also, my sympathy to your husband on his worry over Lyme disease.

Hopefully he has not been infected!

You still have a sense of humor though (quote ...the girls are going

to run the house,or us OUT of the house. end-quote) Seriously

though, best of luck on that front as well. I care for my two

grandsons (ages 9 & 6) and they keep me hopping...I can only imagine

the hoops that you are going through in the care of the girls,

especially while you are so sick.

As I said in an earlier post, whether it be Policosanol or an

alternative supplement, hopefully through our cooperative efforts in

this group we will be able to find something that is both safe and

effective in our battle against high cholesterol and heart disease in

general.

Judy

> Jill, I am confused with all of this and I have never felt as bad

as I

> have with just ONE of the policosanol pills. (well yes, I have

with the

> Lipitor),but that was muscle pain and so on. After taking just one

pill

> two days ago,it started, my toes became numb in one foot, My vision

got

> fuzzy. The next day my stomach was so upset ALL day long. Today I

could

> barely see in the morning,the fuzziness went away,but my stomach

feels

> still yuck still, my kidney or something in my back is hurting, I

feel

> better now but not all together well. But,the muscle pain was not

worse.

> So, I am so confused about getting the policosanol pill made of

sugar

> cane. I thought that this one pill I took the other day, just

completed

> the process that Lipitor has started........ugh.

> And now I have to read up on lyme disease somewhere since my

husband had

> a tick and now has a rash and I hope he does not get sick. It seems

to

> be a very bad disease,that lyme disease.........he said he got up

this

> morning and lost his equilibrium for several hours,I thought he

took a

> Lipitor by mistake,not funny,but if both of us are sick at the

same

> time, the grils are going to run the house,or us OUT of the house.

> (I guess, A LOT of research needs to be done by me before getting

a

> supplement. Now me, I saw cholesteral lowering and ran out to get

not

> one but two bottles of the policosanol,which of corse I won't be

using.

> I cannot fin any with JUST sugar cane and I wonder if that would

make me

> sick. God help me if I get sick and need to take medication

> someday,there seems to be NOTHING that does not make me sick.)

>

[Guest guest]

Hi I live in Canada and we measure our cholesterol in the same

manner. A good cholesterol reading should be less than 4.0 so your

latest readings are great. I personally take lipitor but I have no

side effects. I also take CoQ10. Gail

> Hi

> Have been reading the posts with interest after stumbling accross

> this group. I live in the UK and was prescribed Simvastatin in

> February this year. My cholesterol was high but not that high but

I

> also have an auto immune kidney disease and was told my

cholesterol

> must be low to avoid clogging up the kidneys (I think). I

struggled

> with this for about 6 weeks during which time I had severe nausea

> 24/7. Fair enough the cholesterol levels plummeted from 5.7 to

> 4.6....we seem to measure differently here so don't know what that

> equates to. Went back to GP and was transferred to Lipitor 10 mgs.

> After another month levels down to 3.6- thought I was fading away.

> By this time has developed pains in feet and legs when I stood

> up,still nauseous but not as bad, and as you say felt

> permanently 'Blah'. Always tired etc.

> I have to confess that since joining this group about a week ago I

> have stopped taking Lipitor whilst I read up and consider my

options

> which seem a bit limited at the moment. I do feel better. I

haven't

> told my GP about this as they tell me there's nothing wrong with

> this drug and over here they are now considering selling it over

the

> couner at the pharmacy.

> Any thought would be welcome.Regards Jean

[Guest guest]

It is very interesting to here that you have been going through some

of the same things my Dad has and they did not say ALS. We were

pretty upset when we heard ALS from one doctor and the other saying

he was leaning towards ALS too but he had high protein in his spinal

fluid and that is the only reason he was not for sure. They told him

too that he was a mystery case and they will just have to keep

watching him. Are you taking anything for this like steriods, IVIG,

or anything else? Did you try the CoQ-10? I will keep in touch with

you! Thanks!

> I am amazed at these doctors. ALS is a devastating diagnosis to lay

on anyone and to do so without exhaustive tests is unforgivable.

>

> These doctors ought to get their act together. One group of doctors

say that the only measurable result of statin damage is elevated CPK

and as far as I understand it one gets elevated CPK with ALS.

>

> I had symptoms that mimicked ALS - foot-drop, twitching, atrophy,

muscle cramps, elevated CPK, walking and balance problems and muscle

weakness.

>

> These problems have progressed for more than six years, three of

which after stopping statins. Due to the time element, this is one

reason why ALS was ruled out as the Docs said I wouldn't be here if

it was. Plus some tests emg etc confounded a single diagnosis.

>

> You say that: " They just don't know exactly what it is or

> what is causing it. "

>

> Same with me. I have been under investigation for three years with

no definitive diagnoses ( a very complicated case, they say). They

are leaning towards spontaneous distal myopthy.

>

> Mr Cognito

> New Member

>

>

> My Dad was on Lipitor for a year and during this time he had

> twitching in the upper arms. He went to is doctor for a yearly

> physical and the doctor sent him to a neurologist because of the

> twitching and to stop taking all medication (which he was only on

> Lipitor). Before running any test the neurologist diagnosed him

with

> ALS (Lou Gehrig Disease) with 6 to 18 months to live. He went

for a

> second opinion after running some test the 2nd neurologist was

> leaning towards ALS too but there was one test left to do which

was

> the spinal tap. It came back with elevated protein in the spinal

> fluid which ALS is not known for and so the doctor could not

diagnose

> it. Since then (over 18 months from the first diagnoses and

stopping

> Lipitor) He was told to do 5 treatments of an expensive procedure

of

> IVIG (Intravenous Immunoglobin). He had seen improvements (less

> twitching, numbness, tingling, and burning sensations) but the

> neurologist did not have him do another treatment until 8 1/2

months

> had past which during that time he started twitching more, with

all

> of the other sensations coming back and now he had problems with

his

> arms locking up. His EMG came back with a little more nerve

damage

> and they still think it is a chance it is ALS (5%) but definitely

a

> peripheral neuropathy. They just don't know exactly what it is

or

> what is causing it. We brought up at that time the Lipitor and

the

> doctor said no way. That the side affects only affect the

muscles

> not the nerves and it would of showed up in the blood test if

that

> was the reason. So he is now doing the IVIG treatments every

month

> and getting stronger but still having problems.

>

> So after that long story, I was wondering if others were

diagnosed

> wrong and if so did you have the twitching and things that mimic

ALS

> or any other disease?

>

>

>