New member introduction

[Guest guest]

-Hi there Cherwyn and extended family. I am sure you will enjoy the forum and

get guidence from the experienced members here. It is such a comfort to finally

realise that we are no longer alone in this journey as we learn from each other.

There is an 'off topic' forum attached to this one, which members discuss things

non thyroid. Most posts here are thyroid related rarely do they go off topic.

F

> I'm Cherwyn, an American with Hashimoto's Disease. Our three children are

> also hypothyroid. Our journey to diagnosis has been painful and marked by a

> great deal of frustrating discussion with hard-headed physicians who don't

> know anything about thyroid. I am thankful that we are all now diagnosed and

>

>

>

> Thanks for letting me be in this group!

>

>

>

> Cherwyn

>

[Guest guest]

Hi, everyone,

I’m Cherwyn,

an American with Hashimoto’s Disease. Our three children are also

hypothyroid. Our journey to diagnosis has been painful and marked by a great

deal of frustrating discussion with hard-headed physicians who don’t know

anything about thyroid.

Thanks for letting

me be in this group!

Cherwyn

[Guest guest]

Hi Everybody, seems our is having problems with her responses,

sometimes they show and sometimes they don't. Problem is, this is becoming a

regular occurrence these days. , tell us what is happening and we will

try to help you sort it out - that is, of course, if you are getting my

messages telling you we are not getting yours. I'll give you a call.

luv - Sheila

RE: new member introduction

Hi, everyone,

I'm Cherwyn, an American with Hashimoto's Disease. Our three children

are also hypothyroid. Our journey to diagnosis has been painful and

marked by a great deal of frustrating discussion with hard-headed

physicians who don't know anything about thyroid.

Thanks for letting me be in this group!

Cherwyn

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Checked by AVG - www.avg.com

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14:52:00

[Guest guest]

Hello Cherwyn and welcome to our forum. I am glad you came over - I have

been watching the Hypothyroid group now for some time and couldn't

believe what was going on. I understand the owner walked out - and to be

honest I couldn't blame him, though he should have been capable of putting a

stop to it all. I knew there must be some folk there desperate to get

support for their problems, and it just isn't going to happen there any

more. Such a shame. Those people are intensely sellf-centred and obviously

care nothing for their fellow sufferers. Why they couldn't go and open their

own forum I have no idea. Anyway, this group will do everything it can to

help you and your family - and I can promise you there will never be

anything happening on this forum like that one. However, I would warn you

right now that if you opted to receive Individual Emails when you

registered, I would honestly change it to either a Daily Digest or to

Special Notices, because we receive approximately 2500 messages every month,

and one month, we almost hit 3000 - and that's a lot of messages filling up

your Inbox.

We are the same in the UK, most of our endocrinologists we call endoprats -

because believe me, sometimes, I don't know how they passed their exams -

they know so little and leave so much suffering around them. If I was them,

I wouldn't be able to sleep - but they are paid well, so they really don't

seem to care. Neither will the physicians here prescribe hydrocortisone -

because they think it highly dangerous and that only those with 's

disease should be using it. We have private doctors who will prescribe it,

but they cost money. Even on the patient information leaflet that is stuffed

into our boxes of levothyroxine, it says to tell your medical practitioner

if you have low adrenal reserve before taking the tablets as you may need

steroid medication first. Doctors haven't even read this, and certainly they

are not taught this in medical school. We have to self diagnose, self treat

and self monitor.

Don't worry about the folk who know a great deal about thyroid and

biochemistry that are on the Hypothyroid group, they are on this forum

too - Chuck is here and often makes contributions to some of the

discussions.

Luv - Sheila

I look so much forward to our exchanges and to learning from all of you,

and perhaps helping with thoughts or ideas when I can. I was invited

onto this list by Sheila , who recommended to us on an unmoderated

thyroid board (which was very frustrating) that we consider joining this

one. I have learned that moderation is indeed a very good thing! I know

this list will be a breath of fresh air, after sinking under the weight

of political (non-thyroid-related) discussions and child

molesters/sexual perverts being on the other list, completely

unmoderated. It's a shame, because there are people on that board who

seem to know a great deal about thyroid and biochemistry. But lately the

discussions have not been so much about thyroid and health.

Thanks for letting me be in this group!

Cherwyn

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.0.238 / Virus Database: 270.11.55/2057 - Release Date: 04/14/09

14:52:00

[Guest guest]

>

> Hi, everyone,

>

> I'm Cherwyn,

Welcome Hun x

Caz

[Guest guest]

Hi Cherwyn

Im fairly new here as well, sorry your family has so much to struggle with, but

the group is a mine of information, and its so nice not feeling on your

lonesome. I think my GP doesnt like it that I joined as I asked for blood tests

she would never normally do and I never heard or knew could be done till coming

here.

If you go onto iherb.com and look up strontium and bone formulas, you can read

many reviews of the products, might find something to help out. I was surprised

how effective some have been found to be. Before you take anything though, make

sure to check its safe with other meds, as suplements can harm as well as help,

which Im certain you already know but bears repeating. Might well go back in a

bit and look at strontium etc with me in mind after some research.

Carole

[Guest guest]

Hi Cherwyn

what you say ''fter sinking under the weight of political (non-thyroid-related)

discussions and child molesters/sexual perverts being on the other list,

completely unmoderated. It's a shame, because there are people on that board who

seem to know a great deal about thyroid and biochemistry. But lately the

discussions have not been so much about thyroid and health.'' Blimey, then net

is wonderful in many ways but also shows the worst of mankind too.

Welcome to TPA and I am sure you will enjoy it, I certainly love the discussions

here, so interesting and helpful.

take care you and all your family.

luv Dawnx

[Guest guest]

, I understand your struggle not to be bitter. Unfortunately, that

only hurts YOU. I want to thank you for the best explanation of what

happens to bring a new batch of itchies, a rubber band sting. It felt like

an insect sting, but more like a rubber band sting, thank you! Old dogs can

always be taught something new! I understand also what you said about pred,

esp. because I was on it too long, 4 years, before adding Imuran and weaned

off pred. It does change everything, but sometimes many pred-induced side

effects go away. I didn't understand how much it changed me other than the

obvious weight gain, until people at work started saying what happened to

your face, my boss called me in for a talk about how people felt they had to

walk on eggs around me, and of course other things. Hang in there, I am so

sorry your docs were so clueless. AIH IS a disease that can go into

remission; I know that is small comfort right now.

You didn't say where you live; have you found any AIHers there? Or other

AIH support groups? Harper knows of another one you might want to check out

because I can't remember a whole bunch anymore, S/T memory loss, fuzzy

brain, etc. I am thrilled your liver is compensating; may it continue to do

so for many years. I assume you are on an anti-depressant; it is important

while you are coming to terms to live with this. I know some who have

primarily biliary cirrhosis (I have both) who have been living with this for

years, although I don't know their stage of cirrhosis. I have just learned

to ask, after all these years. I hope your counselor can help and maybe put

you in touch with others.

Your occupation has put you in a smarter position than most of us and has to

be/will be a great help.

My empathies, and remember, we are here for you.

Blessings,

Kay

[Guest guest]

, I'm hoping that your occupation will benefit our group!

Your occupation has put you in a smarter position than most of us

We have members in their late 70s; this isn't a death sentence. I read that

those who respond to standard therapy can expect normal life spans.

Best wishes.

Harper

AIH dx 2000

[ ] Re:New Member Introduction

, I understand your struggle not to be bitter. Unfortunately, that

only hurts YOU. I want to thank you for the best explanation of what

happens to bring a new batch of itchies, a rubber band sting. It felt like

an insect sting, but more like a rubber band sting, thank you! Old dogs can

always be taught something new! I understand also what you said about pred,

esp. because I was on it too long, 4 years, before adding Imuran and weaned

off pred. It does change everything, but sometimes many pred-induced side

effects go away. I didn't understand how much it changed me other than the

obvious weight gain, until people at work started saying what happened to

your face, my boss called me in for a talk about how people felt they had to

walk on eggs around me, and of course other things. Hang in there, I am so

sorry your docs were so clueless. AIH IS a disease that can go into

remission; I know that is small comfort right now.

You didn't say where you live; have you found any AIHers there? Or other

AIH support groups? Harper knows of another one you might want to check out

because I can't remember a whole bunch anymore, S/T memory loss, fuzzy

brain, etc. I am thrilled your liver is compensating; may it continue to do

so for many years. I assume you are on an anti-depressant; it is important

while you are coming to terms to live with this. I know some who have

primarily biliary cirrhosis (I have both) who have been living with this for

years, although I don't know their stage of cirrhosis. I have just learned

to ask, after all these years. I hope your counselor can help and maybe put

you in touch with others.

Your occupation has put you in a smarter position than most of us and has to

be/will be a great help.

My empathies, and remember, we are here for you.

Blessings,

Kay

[Guest guest]

Hi Kitty. No, I'm not taking an antidepressant at this time. Interestingly, I've

been on SSRI's for years and stopped everything when my liver flared in August.

Since then, I've felt more in-tune with everyday life and less flighty,

so-to-speak. After learning so much about my disease and relearning so much

about liver function, I've decided to take as few medicines as possible, to eat

as clean as possible, and avoid as many contaminants as possible to lessen the

work load of my liver. I am only severely moody when changing Prednisone dosages

and thankfully my mood stabilized about four days ago.

I live in NC and don't have a connection with support groups in my area.

Thankfully, the web fills the gap.

>

> , I understand your struggle not to be bitter. Unfortunately, that

> only hurts YOU. I want to thank you for the best explanation of what

> happens to bring a new batch of itchies, a rubber band sting. It felt like

> an insect sting, but more like a rubber band sting, thank you! Old dogs can

> always be taught something new! I understand also what you said about pred,

> esp. because I was on it too long, 4 years, before adding Imuran and weaned

> off pred. It does change everything, but sometimes many pred-induced side

> effects go away. I didn't understand how much it changed me other than the

> obvious weight gain, until people at work started saying what happened to

> your face, my boss called me in for a talk about how people felt they had to

> walk on eggs around me, and of course other things. Hang in there, I am so

> sorry your docs were so clueless. AIH IS a disease that can go into

> remission; I know that is small comfort right now.

>

>

>

> You didn't say where you live; have you found any AIHers there? Or other

> AIH support groups? Harper knows of another one you might want to check out

> because I can't remember a whole bunch anymore, S/T memory loss, fuzzy

> brain, etc. I am thrilled your liver is compensating; may it continue to do

> so for many years. I assume you are on an anti-depressant; it is important

> while you are coming to terms to live with this. I know some who have

> primarily biliary cirrhosis (I have both) who have been living with this for

> years, although I don't know their stage of cirrhosis. I have just learned

> to ask, after all these years. I hope your counselor can help and maybe put

> you in touch with others.

>

>

>

> Your occupation has put you in a smarter position than most of us and has to

> be/will be a great help.

>

> My empathies, and remember, we are here for you.

>

> Blessings,

>

> Kay

>

>

>

>

[Guest guest]

, on-the-ground support groups for AIH are unusual to non-existent;

we're a " rare disease " . HepC groups are easy to find, but there's little

commonality of needs.

I looked for a " chronic disease " group or counseling, recently. My GPs nurse

said she'd never heard of one that general, only groups for specific illnesses.

After years with AIH, I'm realizing my life will always be " different " , and

perhaps I could use help in handling that.

Harper

[ ] Re:New Member Introduction

Hi Kitty. No, I'm not taking an antidepressant at this time. Interestingly, I've

been on SSRI's for years and stopped everything when my liver flared in August.

Since then, I've felt more in-tune with everyday life and less flighty,

so-to-speak. After learning so much about my disease and relearning so much

about liver function, I've decided to take as few medicines as possible, to eat

as clean as possible, and avoid as many contaminants as possible to lessen the

work load of my liver. I am only severely moody when changing Prednisone dosages

and thankfully my mood stabilized about four days ago.

I live in NC and don't have a connection with support groups in my area.

Thankfully, the web fills the gap.

>

> , I understand your struggle not to be bitter. Unfortunately, that

> only hurts YOU. I want to thank you for the best explanation of what

> happens to bring a new batch of itchies, a rubber band sting. It felt like

> an insect sting, but more like a rubber band sting, thank you! Old dogs can

> always be taught something new! I understand also what you said about pred,

> esp. because I was on it too long, 4 years, before adding Imuran and weaned

> off pred. It does change everything, but sometimes many pred-induced side

> effects go away. I didn't understand how much it changed me other than the

> obvious weight gain, until people at work started saying what happened to

> your face, my boss called me in for a talk about how people felt they had to

> walk on eggs around me, and of course other things. Hang in there, I am so

> sorry your docs were so clueless. AIH IS a disease that can go into

> remission; I know that is small comfort right now.

>

>

>

> You didn't say where you live; have you found any AIHers there? Or other

> AIH support groups? Harper knows of another one you might want to check out

> because I can't remember a whole bunch anymore, S/T memory loss, fuzzy

> brain, etc. I am thrilled your liver is compensating; may it continue to do

> so for many years. I assume you are on an anti-depressant; it is important

> while you are coming to terms to live with this. I know some who have

> primarily biliary cirrhosis (I have both) who have been living with this for

> years, although I don't know their stage of cirrhosis. I have just learned

> to ask, after all these years. I hope your counselor can help and maybe put

> you in touch with others.

>

>

>

> Your occupation has put you in a smarter position than most of us and has to

> be/will be a great help.

>

> My empathies, and remember, we are here for you.

>

> Blessings,

>

> Kay

>

>

>

>

[Guest guest]

Hi-- I just got diagnosed last week, and suspect I've had Lyme since I lived in

Northern New Hampshire in the early 1970s. I have a host of neurological

problems, and have had chronic fatigue and muscle and joint pain for decades. I

have several other conditions that complicate matters. I'm epileptic from

childhood (in a tick-free ecosystem)and have had multiple head injuries from

seizure falls. I have e genetic variation in my liver enzymes, as a result of

which, 9 out of 22 tested don't effectively work to break down a host of

substances including drugs, toxins and hormones.

Knowing I have Lyme makes me reconsider some of my other diagnoses. I have

complicated migraine, which is all aura and neurological symptoms without the

headache, and is triggered by flashing lights and odors, but could have been set

up by Lyme. There a weird flaring of light in my left eye that comes and goes

separately, which I've been told is also migraine, but it isn't triggered. It's

more or less constant. I also had what has been considered a migraine-induced

stroke that left me with intense right side pain and hypersensitivity as well as

muscle weakness. But I understand some Lyme symptoms can mimic stroke. It was

not a blood clot at any rate. My MRI shows many, many lesions in the white

matter of my brain, which did not appear to be MS, though I've had MS type

symptoms. My general neurologist thought they were from the migraines. I'm now

wondering if they're from Lyme.

I had the stroke in 2007, was in a wheelchair for two years, then went to Cuba

for free medical care. Ten weeks of 40 hours a week therapy got me walking

again, but although my energy was good while I was there, it declined again once

I was back. Since I regained the ability to walk, I began noticing some subtler

symptoms that have started to become less subtle.

The scariest right now is difficulty swallowing. My beloved godfather died of

Lyme in May, as a result of nerve damage to the throat. His inability to

swallow properly led to aspiration pneumonia. He wasn't diagnosed until

neurological damage was very advanced,so was not really able to do much

treatment.

I've also started getting tingling, burning, shooting pains, shock sensations

and cramps in my legs, which a second neurologist has been thinking is MS.

My adrenal function is way down, and since I had a tooth pulled 12 days ago, my

throat, armpit and groin glands are swollen and aching. Every little cut gets

red and puffy.

While my godfather was sick I picked up the Buhner book, wanting to understand

more about the disease, and was very impressed with it...and very glad I already

had it when I got the news last week.

I've started on just one pill 3x a day each of andrographis, cat's claw,

knotweed and sarsparilla, and have an appointment with Wayne in Santa

in a couple of weeks.

I have been dealing with challenging health problems all my life, and even

learned to control my seizures, so I'm ready to tackle this one, too, but am

really hoping for more company along the way than I usually have. Which is why

I'm here. Tanks for having this group/list.

I live in Berkeley, CA.

Aurora

[Guest guest]

Aurora,

I am new to this group as well and just started the protocol on Monday with my

two teenagers. We started with bulk Japanese Knotweed in a decoction with

stevia. It is surprisingly nice tasting. Next week we will be adding another

herb to our decoction until we have the entire protocol going.

I chose the whole herb using homemade decoctions because we are all allergic to

corn and soy and very sensitive to food additives and the fillers used in OTC

and Rx meds. Since discovering our corn allergy, the only medicine we have taken

is ibuprofen compounded to be corn-free and that very rarely. I believe I have

had Lyme for my entire adult life and my kids were born with it. We have

suffered with various increasingly bad symptoms for a very long time. In the

last 1.5 years we have had some relief by removing additives and all processed

foods from our lives and eating a Nourishing Traditions style diet. If not for

the dietary changes I would surely be dead by now.

We have been to many doctors with no improvement and even diagnosed our corn

allergy alone. No doctors ever once suggested that our problems could be related

to what we were eating (I didn't know we had developed a corn allergy and food

additives are made almost exclusively from corn) and only in the last two years

were we able to finally find a doctor that diagnosed Lyme disease and possible

coinfections. I believe that is the root cause of our increasing environmental

and food allergies and wacky immune responses. I feel that our fatigue is the

most pressing symptom with allergic reactions being a close second. I am hoping

this protocol will finally allow me to get out of this bed and give my kids the

energy to go for a walk.

I would imagine with your health problems you have learned to avoid food

additives, but if you would like info on avoiding the hidden sources in our

foods I have a post about it on my blog:

http://www.livingitupcornfree.com/2010/06/living-corn-free.html Only once I

found out about the hidden sources and was able to root them out of our diet did

we find real relief from migraines, IBS type symptoms and joint pain. Several

other things happen when we ingest these additives like inability to control

body temperature, increased sweating, red face, irritability, insomnia or

narcolepsy, ear and toothaches, shortness of breath, anxiety, etc. I had never

heard of these symptoms of food allergies which is why it took me so long to

figure out our problem. Further complicating matters was the fact that the corn

is turned into food additives with over 100 different names and they are in

practically everything so we ingested at least a little every meal (canned

veggies, enriched flour, dairy products, etc.). Now that we have cleared up the

food allergy symptoms, I can see that the chronic fatigue, lack of motivation,

inability to bend over (feel faint and unwell every time) and inability to build

stamina or endurance or muscle tone are our remaining symptoms.

Kristy

>

> Hi-- I just got diagnosed last week, and suspect I've had Lyme since I lived

in Northern New Hampshire in the early 1970s. I have a host of neurological

problems, and have had chronic fatigue and muscle and joint pain for decades. I

have several other conditions that complicate matters. I'm epileptic from

childhood (in a tick-free ecosystem)and have had multiple head injuries from

seizure falls. I have e genetic variation in my liver enzymes, as a result of

which, 9 out of 22 tested don't effectively work to break down a host of

substances including drugs, toxins and hormones.

>

> Knowing I have Lyme makes me reconsider some of my other diagnoses. I have

complicated migraine, which is all aura and neurological symptoms without the

headache, and is triggered by flashing lights and odors, but could have been set

up by Lyme. There a weird flaring of light in my left eye that comes and goes

separately, which I've been told is also migraine, but it isn't triggered. It's

more or less constant. I also had what has been considered a migraine-induced

stroke that left me with intense right side pain and hypersensitivity as well as

muscle weakness. But I understand some Lyme symptoms can mimic stroke. It was

not a blood clot at any rate. My MRI shows many, many lesions in the white

matter of my brain, which did not appear to be MS, though I've had MS type

symptoms. My general neurologist thought they were from the migraines. I'm now

wondering if they're from Lyme.

>

> I had the stroke in 2007, was in a wheelchair for two years, then went to Cuba

for free medical care. Ten weeks of 40 hours a week therapy got me walking

again, but although my energy was good while I was there, it declined again once

I was back. Since I regained the ability to walk, I began noticing some subtler

symptoms that have started to become less subtle.

>

> The scariest right now is difficulty swallowing. My beloved godfather died of

Lyme in May, as a result of nerve damage to the throat. His inability to

swallow properly led to aspiration pneumonia. He wasn't diagnosed until

neurological damage was very advanced,so was not really able to do much

treatment.

>

> I've also started getting tingling, burning, shooting pains, shock sensations

and cramps in my legs, which a second neurologist has been thinking is MS.

>

> My adrenal function is way down, and since I had a tooth pulled 12 days ago,

my throat, armpit and groin glands are swollen and aching. Every little cut gets

red and puffy.

>

> While my godfather was sick I picked up the Buhner book, wanting to understand

more about the disease, and was very impressed with it...and very glad I already

had it when I got the news last week.

>

> I've started on just one pill 3x a day each of andrographis, cat's claw,

knotweed and sarsparilla, and have an appointment with Wayne in Santa

in a couple of weeks.

>

> I have been dealing with challenging health problems all my life, and even

learned to control my seizures, so I'm ready to tackle this one, too, but am

really hoping for more company along the way than I usually have. Which is why

I'm here. Tanks for having this group/list.

>

> I live in Berkeley, CA.

>

> Aurora

>

[Guest guest]

Hi,

Welcome! Thanks for the information about Wayne . I live close to Santa

and go all the way to City to see my Doctor! I think I might switch.

Let me know what you think of him.

I'm wishing the best for you. It looks like your case is very complicated.

Best,

Connie Blaze

[ ] New member introduction

[Guest guest]

>

> I've also started getting tingling, burning, shooting pains, shock sensations

and cramps in my legs, which a second neurologist has been thinking is MS.

those are pretty classic neuro lyme symptoms; but yes, it could be MS (there is

no test for MS, so who knows) and some other problems like Vit. B12 / Magnesium

deficiency. I'm guessing liver problems increases the chance of developing B12

deficiency.

swallowing problems and/or very weak voice are also potential lyme problems, but

I don't hear about them often (it is related to one of the cranial nerves, so

also a neuro lyme problem).

> While my godfather was sick I picked up the Buhner book, wanting to understand

more about the disease, and was very impressed with it...

yes, it's one of the very best books about Lyme.

[Guest guest]

Hi Kristy--

I haven't touched an additive in years, but I know they're a serious menace

for people who eat dairy or processed foods. I'm fairly sensitive to corn as

well. And I'd probably say the fatigue and my reactions to environmental

triggers are the biggest impact aspect of being sick for me. Although the

neurological things are scarier. I'm eager to see what difference the herbs will

make.

Aurora

[Guest guest]

I did go a short way along the MS diagnosis pathway. I refused the most

invasive tests since they were going to be inconclusive anyway. Since Lyme

provides an adequate explanation, and I have some protocols I feel fine about

doing, I'm going with that for now.

I've been taking B12 for a long time. My great grandfather and one of his

daughters died of pernicious anemia, and my mother has had multiple myeloma

which has a chronic B12 deficiency connection, and at some point I did test low,

but thankfully, my naturopath put me on a high dose years ago. I have an odd

relationship to magnesium. Every symptom I have screams magnesium deficiency

and I had a test for cellular concentrations which, though not horribly low, did

show low levels, but when I increase magnesium the leg cramps get much worse-- a

paradoxical response. Even did IV magnesium. My doc and I are trying to figure

it out.

The swallowing issue is what killed my godfather. (Did I say that already? Short

term memory issues!) The nerves in his throat were damaged, he couldn't swallow

properly and got aspiration pneumonia which became chronic and untreatable.

Very glad to be here.

[Guest guest]

Connie,

I only saw once (I cannot afford the fees at Gordon Medical) but I know

many who do see him. He is excellent. His reputation is excellent. The whole set

up at GMA is excellent. jo

>

>

> Hi,

>

> Welcome! Thanks for the information about Wayne . I live close to

Santa and go all the way to City to see my Doctor! I think I might

switch. Let me know what you think of him.

>

> I'm wishing the best for you. It looks like your case is very complicated.

>

> Best,

> Connie Blaze

>

>

>

> [ ] New member introduction

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks so much! I wouldn't be able to afford it either, but my Dad is helping me

finance my recovery.

Connie Blaze

[ ] New member introduction

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm so disappointed Dr. Wayne isn't taking any new patients! Oh well!

Connie Blaze

[ ] New member introduction

[Guest guest]

On Aug 5, 2010, at 7:09 PM, Connie Blaze wrote:

> I'm so disappointed Dr. Wayne isn't taking any new

> patients! Oh well!

>

> Connie Blaze

>

> [ ] New member introduction

>

>

[Guest guest]

I see Wayne and he is FABULOUS!  He gave me my life back.  Did you ask how often

you should call to see if he has any openings?

> I'm so disappointed Dr. Wayne isn't taking any new 

> patients! Oh well!

>

> Connie Blaze

>

> [ ] New member introduction

>

>

[Guest guest]

Hi Aurora and Kristy

Excuse me for jumping in but I just noticed Aurora mentioned something which

is sounding familiar. You said 9 out of 22 liver enzymes don't work

effectively. Did your Dr. give a diagnosis to this test result? Do you

remember which labs were run to determine this? My daughter and myself are

chemically ill (she more so than I) The chemical sensitivity has creeped up

slowly over several years of treating Lyme Disease. ...but for the past

three years has been her most disabling symptom. What you discribe sounds

like it could be Porphyria???? I was wondering if you could share what you

know as I have had this on my radar for the past year . I believe many of

the treatments for Lyme including the alternative treatment can be

contraindicated for folks with some of these genetic enzyme dificiencies.

Thanks so much

On Wed, Aug 4, 2010 at 9:41 AM, purpleheartmom <kristyshanks@...>wrote:

>

>

> Aurora,

>

> I am new to this group as well and just started the protocol on Monday with

> my two teenagers. We started with bulk Japanese Knotweed in a decoction with

> stevia. It is surprisingly nice tasting. Next week we will be adding another

> herb to our decoction until we have the entire protocol going.

>

> I chose the whole herb using homemade decoctions because we are all

> allergic to corn and soy and very sensitive to food additives and the

> fillers used in OTC and Rx meds. Since discovering our corn allergy, the

> only medicine we have taken is ibuprofen compounded to be corn-free and that

> very rarely. I believe I have had Lyme for my entire adult life and my kids

> were born with it. We have suffered with various increasingly bad symptoms

> for a very long time. In the last 1.5 years we have had some relief by

> removing additives and all processed foods from our lives and eating a

> Nourishing Traditions style diet. If not for the dietary changes I would

> surely be dead by now.

>

> We have been to many doctors with no improvement and even diagnosed our

> corn allergy alone. No doctors ever once suggested that our problems could

> be related to what we were eating (I didn't know we had developed a corn

> allergy and food additives are made almost exclusively from corn) and only

> in the last two years were we able to finally find a doctor that diagnosed

> Lyme disease and possible coinfections. I believe that is the root cause of

> our increasing environmental and food allergies and wacky immune responses.

> I feel that our fatigue is the most pressing symptom with allergic reactions

> being a close second. I am hoping this protocol will finally allow me to get

> out of this bed and give my kids the energy to go for a walk.

>

> I would imagine with your health problems you have learned to avoid food

> additives, but if you would like info on avoiding the hidden sources in our

> foods I have a post about it on my blog:

> http://www.livingitupcornfree.com/2010/06/living-corn-free.html Only once

> I found out about the hidden sources and was able to root them out of our

> diet did we find real relief from migraines, IBS type symptoms and joint

> pain. Several other things happen when we ingest these additives like

> inability to control body temperature, increased sweating, red face,

> irritability, insomnia or narcolepsy, ear and toothaches, shortness of

> breath, anxiety, etc. I had never heard of these symptoms of food allergies

> which is why it took me so long to figure out our problem. Further

> complicating matters was the fact that the corn is turned into food

> additives with over 100 different names and they are in practically

> everything so we ingested at least a little every meal (canned veggies,

> enriched flour, dairy products, etc.). Now that we have cleared up the food

> allergy symptoms, I can see that the chronic fatigue, lack of motivation,

> inability to bend over (feel faint and unwell every time) and inability to

> build stamina or endurance or muscle tone are our remaining symptoms.

>

> Kristy

>

>

> >

> > Hi-- I just got diagnosed last week, and suspect I've had Lyme since I

> lived in Northern New Hampshire in the early 1970s. I have a host of

> neurological problems, and have had chronic fatigue and muscle and joint

> pain for decades. I have several other conditions that complicate matters.

> I'm epileptic from childhood (in a tick-free ecosystem)and have had multiple

> head injuries from seizure falls. I have e genetic variation in my liver

> enzymes, as a result of which, 9 out of 22 tested don't effectively work to

> break down a host of substances including drugs, toxins and hormones.

> >

> > Knowing I have Lyme makes me reconsider some of my other diagnoses. I

> have complicated migraine, which is all aura and neurological symptoms

> without the headache, and is triggered by flashing lights and odors, but

> could have been set up by Lyme. There a weird flaring of light in my left

> eye that comes and goes separately, which I've been told is also migraine,

> but it isn't triggered. It's more or less constant. I also had what has been

> considered a migraine-induced stroke that left me with intense right side

> pain and hypersensitivity as well as muscle weakness. But I understand some

> Lyme symptoms can mimic stroke. It was not a blood clot at any rate. My MRI

> shows many, many lesions in the white matter of my brain, which did not

> appear to be MS, though I've had MS type symptoms. My general neurologist

> thought they were from the migraines. I'm now wondering if they're from

> Lyme.

> >

> > I had the stroke in 2007, was in a wheelchair for two years, then went to

> Cuba for free medical care. Ten weeks of 40 hours a week therapy got me

> walking again, but although my energy was good while I was there, it

> declined again once I was back. Since I regained the ability to walk, I

> began noticing some subtler symptoms that have started to become less

> subtle.

> >

> > The scariest right now is difficulty swallowing. My beloved godfather

> died of Lyme in May, as a result of nerve damage to the throat. His

> inability to swallow properly led to aspiration pneumonia. He wasn't

> diagnosed until neurological damage was very advanced,so was not really able

> to do much treatment.

> >

> > I've also started getting tingling, burning, shooting pains, shock

> sensations and cramps in my legs, which a second neurologist has been

> thinking is MS.

> >

> > My adrenal function is way down, and since I had a tooth pulled 12 days

> ago, my throat, armpit and groin glands are swollen and aching. Every little

> cut gets red and puffy.

> >

> > While my godfather was sick I picked up the Buhner book, wanting to

> understand more about the disease, and was very impressed with it...and very

> glad I already had it when I got the news last week.

> >

> > I've started on just one pill 3x a day each of andrographis, cat's claw,

> knotweed and sarsparilla, and have an appointment with Wayne in

> Santa in a couple of weeks.

> >

> > I have been dealing with challenging health problems all my life, and

> even learned to control my seizures, so I'm ready to tackle this one, too,

> but am really hoping for more company along the way than I usually have.

> Which is why I'm here. Tanks for having this group/list.

> >

> > I live in Berkeley, CA.

> >

> > Aurora

> >

>

>

>

[Guest guest]

Connie, I see Treya Palmer who used to practice in cotati. she has moved but

comes out here about every quarter. She discovered my Lyme when noone could

and has had a slow gentle approach to getting me my body and energy back.

I also see Dr. Lacy in Seb who uses....energy to do chiropratic. I'm sure

that's not the right explanation but it seems to be moving energy and I feel

a bit more energy.

Call me if you want more info - 823-1445.

_____

From:

[mailto: ] On Behalf Of Connie Blaze

Sent: Wednesday, August 04, 2010 3:10 PM

Subject: Re: [ ] New member introduction

Hi,

Welcome! Thanks for the information about Wayne . I live close to

Santa and go all the way to City to see my Doctor! I think I

might switch. Let me know what you think of him.

I'm wishing the best for you. It looks like your case is very complicated.

Best,

Connie Blaze

[ ] New member introduction

[Guest guest]

I'm on a waiting list...

Connie Blaze

[ ] New member introduction

>

>