Re: Is a Fibro attack and Autoimmune Attack ?

[Guest guest]

Hi Joanne,

Everyone with Fibro can relate to alot of what you have written on here. The tv

sounding so extremely loud that it feels like its going right through you, I

suffer with this symptom, and

I'm always asking my husband to lower his voice because sometimes when he talks

I feel like its very loud. The tightening of the chest, and the feeling of not

being able to breathe normally I also get quite often, usually when I'm very

stressed out. Also the pain in the top of the stomach. Yes I believe that these

are all Fibromyalgia symptoms.

Along with restless legs, insomnia, not feeling restored or rested after a full

nights sleep. Sore glands and tender points, usually at the ankles, the chest

area, the back of the neck, just outside of the elbows, the top of the bum or

lower lower back. Not being able to concentrate somedays, feeling very out of

it. Apon waking in the mornings having a stiff body, and it taking a little

while before you feel like you can move properly, like all of your joints need

oiling or something because everything is so stiff. Headaches as well as IBS.

And when your having a Fibro flare, you will feel very light headed and feel

like you have the flu, and all you will want to do is laydown because not only

do you feel like you can't function properly but you hurt everywhere.

Feel better soon,

Love,

Carol

To: fibromyalgiacured

From: joannesford@...

Date: Sat, 5 Mar 2011 21:07:37 +0000

Subject: Is a Fibro attack and Autoimmune Attack ?

Since this is my first fibro attack in I dont know how long, can I ask you all

is this the same as what happens to you

Before the attack you might feel basically notmal, (not normal obviously, but

normal for a fobro person). You might be sat painting a door or cleaning a

window or something when one of your children, or somebody else you care about

comes rushing in the house describing some terrible ordeal that they claim they

need you to sort out immediately. You ask them to speak calmly and they instead

get loader and loader, more agressive. Your husband walks in and starts telling

you that you should not be making such a fuss and next the dog starts barking

All of a sudden nothing feels real it is like everybody is speaking at the same

time and everything has gone loud and aggresive, even the TV sounds like it has

been turned up to max.

as you try to escape from all the coffufle you find your chest has gone tight

and it is rather hard to breath and an enormous agonising pain has just stabed

your gut. You try to scurry but everybody seems to be in your way, and as you

try to get past them you trpip and fumble all the time feeling very anxious and

afraid

If you are fortunate you do get away but then you have the most awful stomach

ache and craving fro carbohydrate, the front of you head feels heavy and all of

a sudden your thoughts have become very confused. Right at this moment you could

really do with somebody coming to your rescue, but instead everybody just starts

harping on at you about how dreadful you look and how you really need to learn

not to let things get to you

Next a tremendous pain begins to pulsate in your hip and then up your spine to

your neck and behind your eye. Whist this is all taking place you feel nauseous

like you might throw up and still the thoughts in your head make little sense,

and often PTSD stuff will emerge

As you try to grapple with all this you find everything you try to hold drops

out of your hand and as you try to say make yourself a cup of tea you find you

have put the kettle on with no water in it, just spilt tela and coffee on the

side and instead of putting the butter in the fridge you have just put it in the

oven

Pain pulsates through your body like a runaway train, every muscle aching, every

hjoint aching and even your skin feels tender to touch. You IBS and possibly PMs

is now in full swing along with allergies, food intollerances the lot

You catch yourself in the mirror, you are pain and gaunt looking, you look ill,

but apparently everybody else is telling you you dont look too bad.

As the attack waines and your mind begins to return you are so exhausted you can

barely speak. Yo just want to get away from everybody and have a good rest but

because the attack has gone on for so long you are behind with everything so you

have to now catch up. The whole time feeling like you have been beaten up and so

dreading another attack soon

Is this Fibro, is this how it is for you? how many of you beleive an attack like

this is an autoimmune attack. I mean howmany of you beleive this attack is

actually a physical assault on you from your very own immune system

Kindest regards

Joanne

[Guest guest]

Replies:

JoAnne,

YES!!! This is just like me. Stress makes it worse and I have been under

stress for 2 1/2 yrs since starting back to school. Ugh. Even on a 4 month

break, the symptoms did not go away though.

People do treat us like we are " sick in the head " . My partner told me that a

year ago...that is was in my head. Never mind that I NEVER treat his pain

like this. (Resentment here.)

I have a friend who SWEARS I have lymes. Every time I read the symptoms, I

do not see them applying to me because of the heart, etc and the fast acting

of the disease. I have not been bit by a tick since I was a child and never

as an adult. As a child, I never had symptoms like this. I did get lung

issues a lot (since infancy). I have or had a healthy heart when I had a

test done two years ago. I have had re-occurring chest pains lately.

I know I have fibro. I feel I also have lupus also. I know diet helps if I

stick on it. Today, I gave in and had two pieces of starburst candy. Had a

headache within ten minutes. Made me sooooo mad that I could not eat

something like that without suffering for hours over it. I can't even have

ice cream any longer with a headache.

maryruth

[Guest guest]

Dear all, Pls bear with me for interrupting. Firbromyalgia is a syndrome (a

combination of signs and symptoms of multiple factors either alone or in

combination primarily, and also can have any no. of precipating factors. So

need not confuse. I wife is suffering from fibro but we are yet to identify the

cause. I have been closely observing the precipiating factors and try to avoid

them. Hence my wife is able to live a near normal life. Thid is the best way to

manage th condn. Best wishes yuvaraj, india

Sent on my BlackBerry® from Vodafone

Re: Is a Fibro attack and Autoimmune Attack ?

Replies:

JoAnne,

YES!!! This is just like me. Stress makes it worse and I have been under

stress for 2 1/2 yrs since starting back to school. Ugh. Even on a 4 month

break, the symptoms did not go away though.

People do treat us like we are " sick in the head " . My partner told me that a

year ago...that is was in my head. Never mind that I NEVER treat his pain

like this. (Resentment here.)

I have a friend who SWEARS I have lymes. Every time I read the symptoms, I

do not see them applying to me because of the heart, etc and the fast acting

of the disease. I have not been bit by a tick since I was a child and never

as an adult. As a child, I never had symptoms like this. I did get lung

issues a lot (since infancy). I have or had a healthy heart when I had a

test done two years ago. I have had re-occurring chest pains lately.

I know I have fibro. I feel I also have lupus also. I know diet helps if I

stick on it. Today, I gave in and had two pieces of starburst candy. Had a

headache within ten minutes. Made me sooooo mad that I could not eat

something like that without suffering for hours over it. I can't even have

ice cream any longer with a headache.

maryruth

[Guest guest]

Hi Everyone,

We all have more or less the same symptoms. Whether its truly lymes or

Fibromyalgia who knows. The problem with it as it being possibly lymes is the

fact

that most of us have been checked for lymes with a negative result. And although

there is alot of people out there with Lymes and get a false negative test back,

the problem

is that boom that doctor says and thinks well thats it then, you don't have

Lymes. And not everyone has either the means or the money to find a good Doctor

that

will check and check for Lymes.

The symptoms we all share wth Fibromyalgia are so many. I read each of your

emails daily, and it seems like everytime one of you mentions a symptom, I'm

like yep, ive got that too.

Joanne mentions alot about the sacriolic joint.. I have been getting pain there

for years and years now, and over the last four years when i'm on my period, its

seems almost as if the depth of the pain has quadrupeled in strength.

Also the feeling of not being able to handle large obnoxious crowds, there once

again, I am going through the same thing, but when I was younger I used to love

such a scene and wanted to be right in the middle of it. I have also always

loved to travel and see new places, but just the very thought of it these days

scare me.

And like ruth said, eating something sweet is devistating to my body. Which

you would think that we would learn, but we don't because we all want to be as

normal as everyone

else out there and be able to eat what ever we want.

Yesterday was my oldest daughters birthday, she turned 23, and I made her a

cake, we all had cake and icecream. Within a half hour I felt terrible. I have

noticed that Sugar slows my body down to where I feel like I can not function

properly.

These are all of the symptoms that I suffer with, with Fibromyalgia. Im sure

that most of you will have most of the same symptoms.

Restless legs--when sitting at the computer I can not keep my legs still most of

the time, one of them is usually bouncing up and down or when laying in bed

sometimes I feel like I just have to move my legs because they get this really

bad ancy feeling in them.

Muscle spasms, - could be in the arm, eyelid, top of head somewhere, back,

sometimes somewhere in the ribs, I never know where its going to happen, it just

happens.

Alot of headaches- Usually a Goody powder gets rid of it, THANK GOD.

Insomnia- I can not stay asleep for more then six hours or sometimes have alot

of problems falling asleep

Unrefreshed Sleep, - When I get up I feel like I havent slept in weeks

Pain, -some days I feel like someone has beaten me up and I have the feeling of

like being bruised everywhere, I don't get this symptom anywhere near as much as

I did when I first got sick with Fibro

Sacriolic Joint pain- This is pain just at the top of the bottom (butt) or very

very lower back and when someone massages this area it feels extremely good

Ibs, not as bad as it used to be but still have it

Pain in the top of the gut, only get this pain every once in awhile, and

sometimes I get an extreme hunger pain in the same area, I don't get this very

often anymore for some reason.

Sore lymphnodes usually sore to the touch at the ankles, outside the elbows,

sometimes behind the neck and a couple of other places

Tender points, on the chest, certain places on the back, certain places on the

arms, sacriolic joint, and a few other places that hurt if slightly pushed on

Light headedness- Usually only happens when having a bad Flare up

Panic attacks-- Feelings like I'm not breathing properly, usually only happens

when Im in my car going somewhere or sometimes when laying down in bed

Chest Pains, I also get this uneasy feeling on the left side of my chest like

somethings just not right, and when I get that, it scares me

Upper back pain, specially between the shoulder blades

Dry skin

Ridges in my nails

Stiffness in the mornings or when I have been in one position too long

Unable to consume sugar or alcohol without feeling awful for doing so

Cognitive Coordination problems like sometimes have problems finding the right

word when talking, or sometimes my hand writing becomes extremely messy.

Unable to sit still to watch very much tv

Can not handle loud tv or loud music anymore or loud people

Can not handle stress like I used to be able to when I was young

If I over do it with housecleaning or whatever, the next day I feel like Ive

been run over by a bus

Bloating and lower leg swelling if Ive been sitting too long at the computer

Numbness in hands, arms, sometimes face

Temple pain every once in awhile

Jaw clicking sometimes in the mornings after apon waking up and jaw pain

Extremely painful periods

Easily Fatigued

Weakness with no energy

Depression which I'm sure mainly stems from sick of being sick

Some times I get a ringing high pitched noise in my ears

Hip Pain, only every once in awhile

Sometimes I get shaky if I have not eaten for awhile

Neck pain

Always feeling like I need to stretch, and can not sit in same position too long

without it becoming uncomfortable

Sunny days make me feel a little better and so does soft music, and Epsom Salt

Baths

Hugs,

Carol

To: fibromyalgiacured

From: maryruthdilling@...

Date: Sun, 6 Mar 2011 19:00:27 -0800

Subject: Re: Is a Fibro attack and Autoimmune Attack ?

Replies:

JoAnne,

YES!!! This is just like me. Stress makes it worse and I have been under

stress for 2 1/2 yrs since starting back to school. Ugh. Even on a 4 month

break, the symptoms did not go away though.

People do treat us like we are " sick in the head " . My partner told me that a

year ago...that is was in my head. Never mind that I NEVER treat his pain

like this. (Resentment here.)

I have a friend who SWEARS I have lymes. Every time I read the symptoms, I

do not see them applying to me because of the heart, etc and the fast acting

of the disease. I have not been bit by a tick since I was a child and never

as an adult. As a child, I never had symptoms like this. I did get lung

issues a lot (since infancy). I have or had a healthy heart when I had a

test done two years ago. I have had re-occurring chest pains lately.

I know I have fibro. I feel I also have lupus also. I know diet helps if I

stick on it. Today, I gave in and had two pieces of starburst candy. Had a

headache within ten minutes. Made me sooooo mad that I could not eat

something like that without suffering for hours over it. I can't even have

ice cream any longer with a headache.

maryruth

[Guest guest]

ruth, I don't understanding when you say Lyme sx don't seem to match

because of your heart sx and fast-acting of the disease. Most people with Lyme

have their heart affected too, to lesser or greater extent. The illness happens

all over the map in terms of speed - some might wake up paralyzed from nerve

involvement - that's fast. Others, more typically, have a gradual onset with

symptom after symptom developing. Are you saying you were bit by a tick when

younger? The illness can lie dormant, typically to come out during stress when

the immune system lowers. Of course, many things can cause symptoms, so need to

check it all out.

Lupus can be a presentation of Lyme - sometimes - not always.

Diet can affect us greatly. Sugars feed the bacteria, also slow the immune

system down immediately - I've seen the white blood cells clumping under the

microscope just after sugar. So to find treats that are not so sugary... - take

care - Robin

Re: Is a Fibro attack and Autoimmune Attack ?

Replies:

JoAnne,

YES!!! This is just like me. Stress makes it worse and I have been under

stress for 2 1/2 yrs since starting back to school. Ugh. Even on a 4 month

break, the symptoms did not go away though.

People do treat us like we are " sick in the head " . My partner told me that a

year ago...that is was in my head. Never mind that I NEVER treat his pain

like this. (Resentment here.)

I have a friend who SWEARS I have lymes. Every time I read the symptoms, I

do not see them applying to me because of the heart, etc and the fast acting

of the disease. I have not been bit by a tick since I was a child and never

as an adult. As a child, I never had symptoms like this. I did get lung

issues a lot (since infancy). I have or had a healthy heart when I had a

test done two years ago. I have had re-occurring chest pains lately.

I know I have fibro. I feel I also have lupus also. I know diet helps if I

stick on it. Today, I gave in and had two pieces of starburst candy. Had a

headache within ten minutes. Made me sooooo mad that I could not eat

something like that without suffering for hours over it. I can't even have

ice cream any longer with a headache.

maryruth

[Guest guest]

Hi Joanne,

Some of your past seems like it would be called social anxiety. Since you are

healing more, you are now wanting more out of life, more good social experiences

as well. I am going through that to a point. I just used to avoid what would

make me uncomfortable, but now doing better at plunging in with friends. I don't

have to be around too much intense drama with my family, but it is more there

than with friends. You probably need to be more alert with your family, but as

you heal more, you may not go into hyper alert. It is best to avoid violent

programs. Psalms 11:5, Isaiah 60:18. I always had terrible handwriting, and

could not write neatly even when trying(but could actually draw well). I was a

bit dyslectic, as a child-transposing letters. I seem to be having that more

lately as I type now. I think my body is now working on that as I heal, so it

may be even worse for a while. I am working on some seeds, and ordered a meyer

lemon plant, a some more seeds. I have a sun porch, and will put some plants in

containers. I am in a condo, and could plant flowers out doors, but here they

may spray roundup. It is all blooming so nicely here in SC, even shrubs. Noise

bothers me more than smells, except chemical smells, I am still very sensitive

to. my mom smoked heavily, as I was in that house 40 years, and think I lost

some sense of smell. I never smoked. I think you are talking about yard sales,

and I love those, but as I have no car, and don't get to them much. I had a

friend in IN, as we went to them-picked up too much I did not need. I joined

freecycle here, but as I live alone, can't really invite strangers over, and no

way to take things to them.

C

>

>

> Lovell

>  

> 'fibro flares' like what I hve had this week where I felt terribly ill and

unable to function are very rare for me now, but, even when I am OK and not

flaring I have like a template of the illness

>  

> What I mean by this is in the morning I always feel half a sleep until midday,

and some days this can go on until 4pm, but every day from 4pm onwards I do feel

more normal.

>  

> I also cannot lift much. I can list a plastic box with toys in it, but I would

not be able to lift a big bag of compost

>  

> Also i find it difficult to do fine mtor stuff like threading a needle. my

writing has changd too, it is rather scruffy, when I was young it was incredibly

neat

>  

> I do not have a great deal of pain but I do have pain around my sacroiliac

joint. This varies form day to day, but even when it is mild it is irrtating. It

feel like something is crawling around there. I occasionally get the same

feeling in my gut, but not so much nowadays

>  

> I am OK with church friends and my market frinds but when I am around people

that are drinking or messing around i feel highly threatened and my senses go on

alert. I would rather not go to a family do, like a wedding, I just feel unwell

at loud rushed events, I need to feel safe all the time and that I have total

control over everything I am doing. If I was at a wedding and somebody popped a

balloon or grabbed me to dance, or put their hands overmy eyes and said guess

who, I would become very panicked ant this would cause a fibro flare so I would

not go in the first place to avoid this sort of thing. a short while ago my

husband pestered me to go to a family party and when we got there I felt really

sad and just wanted to come home. I do not feel like i can socialise in that

way. But 99% of the time I am fine at church and even at church functions, but i

have noticed that at sacila events at church i usually want to sit near the door

so i know I can

> leave easily

>  

> I do not like smells. it is hard for me to think of a smell I like. Smells

make me feel nauseous, but rarely trigger a fibro attack nowadays

>  

> I do not watch muvh TV. If I see somebody being attacked I feel like I am

being attacked. I cannot stand seeing people suffer. I also tend to internalise

things and i get more afraind than other poeple do. I used to obsess about wars

and the economy when i watched TV now I do not worry so much

>  

> A lovely sunny day will relive my fibro a very lot. On some sunny days I will

feel like I barely have any fibro. Eating the ketogenic diet helps loads but if

i do not take the supplements or i do not drink enough water I feel more ill. I

am not good with vigourous excercise but I am good with walks and gardening. If

i do very little excercise i start getting more fibro problems

>  

> I am sharing this more to get my perspectives. I have lost my perspective

lately,

>  

> I have let a lot of stuff get under my skin. I am worrying more lately abbout

not having enough money and I have been getting too involved with my children,

and a fe other things. But since I ahve been sharing on here I ahve minaged to

find my own mind again, I am just kind of wobbly because I think i need to put

some effort in on getting my life more in balance.

>  

> I have done better today. I watched a new version of Brideshead Revisited last

night and that helped me a bit to see some of the stuff I have been doing,

especially with my children. And today i went shopping on a carboot, its weird

but shopping on carboots often helps me get more stable. It has been sunny, and

very mild and this helped. And another good thing that has happened is that

quite a few people on freecycle have given me some cupboard doors, handles a

work top and other stuff. I am going to be able to make some cupboards for my

dining room. This will takeme, I dont know how long but this will be a good

project to get my mind of the junk i have been obsessing about lately

>  

> Thanks for being there Lovell

>  

> all my love joanne

[Guest guest]

Has anyone else read this about the worms helping autoimmune diseases? They

think the worms suppress the immune system, but many like Bee think the

bacteria, and even parasites actually helps us. Bee does not think killing off

those things help, and they just come back. Of course, if a kid has 100 worms,

it is different than having 10(the amount in the study). If the body had less

toxins from the environment, he is more likely for his body to handle the

excess. There is much lately on how people too clean, more get autoimmune

disease and intense reactions to common substances. They even get more

depression. I think working on candida can help the bacteria as well, as candida

is the worse aspect, as it is a further stage-the next being cancer. It is a lot

to think about, and try to get a handle on.

I was around the outdoors as a child, and remember ticks, and we played in the

dirt a lot until our grass got going at our home. It was a while before houses

got built next to us, and our grandparents had a small farm. We got the child

hood illnesses, and was not real sick with them. We did get the polio shot, and

perhaps the sugar dose as well. I have done a lot of reading about all this, and

cannot afford tests, but know antibiotics for my rosacea, did not help,(actually

some of my other health problems got worse after that) but only going wheat free

helped, and now going grain free, and processed food free helped even more. Even

now, if I have processed, or bread, the first thing that happens is a red

nose-really just my body getting rid of it. My pain comes back as well when

have the processed foods. So this diet is the only thing I can afford to do, and

really it has helped me more than any other thing I have tried. It is not easy,

as the body really wants what is not good for it. It can be done, but you cannot

cheat much on it and get away with it.

http://www.nytimes.com/2008/07/01/health/research/01prof.html

http://query.nytimes.com/gst/fullpage.html?res=9800E6DD1138F932A35754C0A96E9C8B6\

3 & pagewanted=all

C.

>

> Hi Joanne - thx so much for your lengthy response - I was beginning to think I

was the only one here who thought it was Lyme.

>

> So, to answer you - yes, any of us could have been exposed to Lyme a long time

ago - ticks are hard to see, Lyme is carried by at least 23 insects that they

know of now, and there is congenital transmission for some.

>

> Women, and men too, have been badly treated here with fibro diagnoses too. I

was sent to five psychologists! I told each of them that yes, I was feeling

depressed, but it was because I was hurting. They inquired into our family

histories and wrote stupid stuff too about each of us - that's their MO, to

dismiss us. We have to be bigger than that and insist upon the right to have

accurate medical attention. When I came back positive for Lyme, I contacted all

the places I had gone to in the past, educated them, and asked for my records to

be updated with the new information.

>

> Whenever they say it's all in your head, I now say. " You're right, if it is

indeed Lyme, since the bacteria get into the brain within 12 hours and inflame

the nerves from the brain on down. "

>

> Testing is not perfect yet. I think they are now working on better DNA

testing. For now, we mostly have the antibody tests. There is no question that

the IGeneX lab in Palo Alto, CA is the best for getting the IgM and IgG antibody

tests. They use two strains, whereas other labs usually test against one. They

told me they are able to test for strains all over the world. They will send you

a free testkit. All you need is an ordering doctor. They do not have to be

knowledgeable to treat you afterwards - this is just to order the tests. They

offer a discount if people are really low-income. www.IGeneX.com,

1-.

>

> But here's the catch - only 60-70% will test positive on the antibody tests

who have the illness. There are 27 reasons listed for seronegativity at

www.canlyme.com/seronegreasons.html - that's why Lyme-treating doctors treat

clinically, by history and symptoms. Sometimes someone turns positive in testing

AFTER they've been treating, when their body becomes strong enough to start

having more antibodies available to react to the bacteria. I saw this happen

with one friend of mine.

>

> It would be nice if you could find an ordering doc who's at least kind about

doing so. They don't have to be your treating doctor - just to order the IgM and

IgG test, and then the results come back to them.

>

> There are also other co-infections people test for if symptomatic - babesia,

bartonella, ehrlichia - I recommend that anyone google symptoms for these and

see if you think you match. If so, then to test for them too.

>

> If by some chance you did test positive for Lyme, there are lots of treatments

available - abx, herbs, supplements, homeopathy, oxygen, energy treatments, etc.

The trick is to find what works for us. Clindamycin had already worked to treat

a finger infection - that's why I tried it for my new Lyme dx and it worked. I

do that and supplements now.

>

> I thought candida was my problem for awhile. Most of us with Lyme get it.

Well, so many do anyway, who don't have Lyme. I say treat the candida. Gotta

tell you though, only the abx seems to stop the fibro sx and swelling joint sx.

>

> There have been others who have done fancy and expensive treatments like

oxygen dives or stem cell injections who have gone into remission - whatever it

took to counter the bacteria. Treatment involves three approaches - kill/control

the bacteria, detox and fortify. The oxygen dives helped to kill the bacteria,

since they don't like oxygen. The stem cell injections boosted the body's immune

system. Since many of us aren't in a place to afford the fancy treatments, we

find less expensive supplements that work for us. I'm doing several that work

for me. Lyme doctors also order blood tests to see what your physiology is

doing, also people order liver detox tests sometimes to see what's happening

with their genetic ability to detox.

>

> I hope this answers some of your questions. I hear your frustration! And I

agree with you that there's a lot of diagnoses out there. However, Lyme presents

as 350 conditions, which are nerve and soft tissue related, so it's a

complicated study. Just have to look at it all!

>

> Understanding is half the key - once we understand how it all works, it

becomes easier to answer others on it. Like, not everyone tests positive who has

it, so just because we may not test positive does not rule it out. That's very

important to understand. People who are negative on tests go to Lyme-treating

doctors! Maybe a third of the folks at support groups have tested negative. But

they're treating, and herxing - ie - responding to treatments.

>

> Am happy to answer more questions - thx - Robin

>

>

[Guest guest]

Hi - many on lymenet discuss worms being a problem as well, and maybe do

de-worming and de-parasiting (word?). You can go to www.lymenet.org and then

type these kinds of words in the search box and read what people do to get rid

of them. Anything to help health...

Interesting that you saw ticks when you were younger. I saw the tick in my foot

that did this, but so many never see the tick/ticks that bit them. - Robin

Re: Is a Fibro attack and Autoimmune Attack ?

Has anyone else read this about the worms helping autoimmune diseases? They

think the worms suppress the immune system, but many like Bee think the

bacteria, and even parasites actually helps us. Bee does not think killing off

those things help, and they just come back. Of course, if a kid has 100 worms,

it is different than having 10(the amount in the study). If the body had less

toxins from the environment, he is more likely for his body to handle the

excess. There is much lately on how people too clean, more get autoimmune

disease and intense reactions to common substances. They even get more

depression. I think working on candida can help the bacteria as well, as candida

is the worse aspect, as it is a further stage-the next being cancer. It is a lot

to think about, and try to get a handle on.

I was around the outdoors as a child, and remember ticks, and we played in the

dirt a lot until our grass got going at our home. It was a while before houses

got built next to us, and our grandparents had a small farm. We got the child

hood illnesses, and was not real sick with them. We did get the polio shot, and

perhaps the sugar dose as well. I have done a lot of reading about all this, and

cannot afford tests, but know antibiotics for my rosacea, did not help,(actually

some of my other health problems got worse after that) but only going wheat free

helped, and now going grain free, and processed food free helped even more. Even

now, if I have processed, or bread, the first thing that happens is a red

nose-really just my body getting rid of it. My pain comes back as well when

have the processed foods. So this diet is the only thing I can afford to do, and

really it has helped me more than any other thing I have tried. It is not easy,

as the body really wants what is not g ood for it. It can be done, but you

cannot cheat much on it and get away with it.

http://www.nytimes.com/2008/07/01/health/research/01prof.html

http://query.nytimes.com/gst/fullpage.html?res=9800E6DD1138F932A35754C0A96E9C8B6\

3 & pagewanted=all

C.

>

> Hi Joanne - thx so much for your lengthy response - I was beginning to think I

was the only one here who thought it was Lyme.

>

> So, to answer you - yes, any of us could have been exposed to Lyme a long time

ago - ticks are hard to see, Lyme is carried by at least 23 insects that they

know of now, and there is congenital transmission for some.

>

> Women, and men too, have been badly treated here with fibro diagnoses too. I

was sent to five psychologists! I told each of them that yes, I was feeling

depressed, but it was because I was hurting. They inquired into our family

histories and wrote stupid stuff too about each of us - that's their MO, to

dismiss us. We have to be bigger than that and insist upon the right to have

accurate medical attention. When I came back positive for Lyme, I contacted all

the places I had gone to in the past, educated them, and asked for my records to

be updated with the new information.

>

> Whenever they say it's all in your head, I now say. " You're right, if it is

indeed Lyme, since the bacteria get into the brain within 12 hours and inflame

the nerves from the brain on down. "

>

> Testing is not perfect yet. I think they are now working on better DNA

testing. For now, we mostly have the antibody tests. There is no question that

the IGeneX lab in Palo Alto, CA is the best for getting the IgM and IgG antibody

tests. They use two strains, whereas other labs usually test against one. They

told me they are able to test for strains all over the world. They will send you

a free testkit. All you need is an ordering doctor. They do not have to be

knowledgeable to treat you afterwards - this is just to order the tests. They

offer a discount if people are really low-income. www.IGeneX.com,

1-.

>

> But here's the catch - only 60-70% will test positive on the antibody tests

who have the illness. There are 27 reasons listed for seronegativity at

www.canlyme.com/seronegreasons.html - that's why Lyme-treating doctors treat

clinically, by history and symptoms. Sometimes someone turns positive in testing

AFTER they've been treating, when their body becomes strong enough to start

having more antibodies available to react to the bacteria. I saw this happen

with one friend of mine.

>

> It would be nice if you could find an ordering doc who's at least kind about

doing so. They don't have to be your treating doctor - just to order the IgM and

IgG test, and then the results come back to them.

>

> There are also other co-infections people test for if symptomatic - babesia,

bartonella, ehrlichia - I recommend that anyone google symptoms for these and

see if you think you match. If so, then to test for them too.

>

> If by some chance you did test positive for Lyme, there are lots of treatments

available - abx, herbs, supplements, homeopathy, oxygen, energy treatments, etc.

The trick is to find what works for us. Clindamycin had already worked to treat

a finger infection - that's why I tried it for my new Lyme dx and it worked. I

do that and supplements now.

>

> I thought candida was my problem for awhile. Most of us with Lyme get it.

Well, so many do anyway, who don't have Lyme. I say treat the candida. Gotta

tell you though, only the abx seems to stop the fibro sx and swelling joint sx.

>

> There have been others who have done fancy and expensive treatments like

oxygen dives or stem cell injections who have gone into remission - whatever it

took to counter the bacteria. Treatment involves three approaches - kill/control

the bacteria, detox and fortify. The oxygen dives helped to kill the bacteria,

since they don't like oxygen. The stem cell injections boosted the body's immune

system. Since many of us aren't in a place to afford the fancy treatments, we

find less expensive supplements that work for us. I'm doing several that work

for me. Lyme doctors also order blood tests to see what your physiology is

doing, also people order liver detox tests sometimes to see what's happening

with their genetic ability to detox.

>

> I hope this answers some of your questions. I hear your frustration! And I

agree with you that there's a lot of diagnoses out there. However, Lyme presents

as 350 conditions, which are nerve and soft tissue related, so it's a

complicated study. Just have to look at it all!

>

> Understanding is half the key - once we understand how it all works, it

becomes easier to answer others on it. Like, not everyone tests positive who has

it, so just because we may not test positive does not rule it out. That's very

important to understand. People who are negative on tests go to Lyme-treating

doctors! Maybe a third of the folks at support groups have tested negative. But

they're treating, and herxing - ie - responding to treatments.

>

> Am happy to answer more questions - thx - Robin

>

>

[Guest guest]

Hi Robin,

My tinnitis comes and goes, and if I get sugar or processed foods, I also get a

very itchy ear . If I am tempted, I tell myself, I do not want to feed the

bacteria. About Benadryl, seems I read something about its dangers especially

for the elderly. This is one-

http://www.virginiahopkinstestkits.com/benadryl.html

Also if using, think about why your body produces histamine-it is for a good

purpose-to bring blood, itching, swelling, and healing to an injury, or to get

rid of a substance. I take a flushing niacin 50 mg, which does not always give

me a flush, but it is still helping my body produce histamine-helping to detox,

and open my capillaries, and when you take Benadyl, you are preventing your

bodies detoxing. We want that blood to get to our poor sore muscles. I have very

bad insomnia, and took Ambien, and slept better, but found out it very much

increased my pain. Wish I had found out that earlier. Some doctors say you can

give Benadryl to small children, and people have killed babies at day cares

giving it to them. Neurontin and flexeril help me sleep, but they lose

effectiveness after a while, so got off them. Wish there was a solution to this

sleeping problem, but whatever helps put you to sleep is going to cause some

kind of problem. You did not mention how often you take it.

With concern,

C,

>

>

> Hi Carol -

>

> Insomnia - typical of Lyme. All of us try to find ways to deal with it. I

knock out with 25-50mg benadryl.

> Nail ridges - I've heard that happens with lowered zinc.

> Numbness - can be typical Lyme nerve symptoms.

> Jaw clicking - Lyme hitting the TMJ joint. It was one of my sx early on, I got

a splint for it, no one knew there was an infection involved.

> Weakness - the Lyme bacteria use up our magnesium for their reproduction, so

we don't have enough for the ATP energy cycle in our cells.

> Ear ringing - called tinnitus - typical Lyme - nerves to the ears affected.

Interestingly enough, tx care too.

>

> Enough for now! - Robin

>

>

[Guest guest]

Hi - the tinnitus I was able to stop with the PEMF machine - we hold a coil as

it clicks electromagnetic pulses and boosts our electromagnetic energy.

Evidently, it gave back to the nerves what they needed and the tinnitus stopped

for 6 hours after treatment. If any of you can locate a PEMF machine, like at a

chiropractor's place or PT, you could try it. Stands for pulsed electromagnetic

frequency.

The benadryl is a necessity for me at nighttime, otherwise I don't go to sleep.

I've been doing it for years. I know we're all different, and different things

work for each of us. I do have major trouble with histamine ie hives, however -

I break out with hives when I touch most things. so I have to wear my old

clothes - it's very limiting and one of my hardest residual symptoms. So what do

you think that means re the niacin and the description below about inducing

histamine?

I did the liver detoxigenomic test through the Genova Diagnostics lab and it

showed I have a hard time detoxing in two major pathways. I don't know whether

any of you here are that sensitive to the touch. My Lyme doc wants me to do far

infrared sauna detoxing. - Robin

Re: Is a Fibro attack and Autoimmune Attack ?

Hi Robin,

My tinnitis comes and goes, and if I get sugar or processed foods, I also get a

very itchy ear . If I am tempted, I tell myself, I do not want to feed the

bacteria. About Benadryl, seems I read something about its dangers especially

for the elderly. This is one-

http://www.virginiahopkinstestkits.com/benadryl.html

Also if using, think about why your body produces histamine-it is for a good

purpose-to bring blood, itching, swelling, and healing to an injury, or to get

rid of a substance. I take a flushing niacin 50 mg, which does not always give

me a flush, but it is still helping my body produce histamine-helping to detox,

and open my capillaries, and when you take Benadyl, you are preventing your

bodies detoxing. We want that blood to get to our poor sore muscles. I have very

bad insomnia, and took Ambien, and slept better, but found out it very much

increased my pain. Wish I had found out that earlier. Some doctors say you can

give Benadryl to small children, and people have killed babies at day cares

giving it to them. Neurontin and flexeril help me sleep, but they lose

effectiveness after a while, so got off them. Wish there was a solution to this

sleeping problem, but whatever helps put you to sleep is going to cause some

kind of problem. You did not mention how often you take it.

With concern,

C,

>

>

> Hi Carol -

>

> Insomnia - typical of Lyme. All of us try to find ways to deal with it. I

knock out with 25-50mg benadryl.

> Nail ridges - I've heard that happens with lowered zinc.

> Numbness - can be typical Lyme nerve symptoms.

> Jaw clicking - Lyme hitting the TMJ joint. It was one of my sx early on, I got

a splint for it, no one knew there was an infection involved.

> Weakness - the Lyme bacteria use up our magnesium for their reproduction, so

we don't have enough for the ATP energy cycle in our cells.

> Ear ringing - called tinnitus - typical Lyme - nerves to the ears affected.

Interestingly enough, tx care too.

>

> Enough for now! - Robin

>

>

=

[Guest guest]

Hi Robin,

Sorry to hear about the hives. It seems the Benadyl has not keep your body from

producing histamine, since you will get hives from touching- In Bee's board if

someone get a rash, acne, itching, she says that is the way the body chooses to

detox, and will eventually improve if they stick to the diet, and stay away from

that substance-toxin that may be causing it. The flushing niacin helps detox,

and I do dry skin brushing, and epsom salt baths. Have you tried any of those? I

think Bee mentions saunas, but can't remember much about it. You may be detoxing

more from the skin, because as you say, your other detoxing pathways are not

working well. Some medicines that take away a symptom, can give us the same

symptom, perhaps now benedry can be giving you rashes-your body is getting rid

of it. A friend cannot wear bracelets, gets an immediate rash, and I once got a

very bad rash from a fabric watch band. I wear mostly cotton, or linen, and use

cotton bedding. My skin has improved while on the diet, and have skin problems

only when I cheat on the diet. I put coconut oil on my face at night. Cod liver

oil it good too. Not sure if you are on Bee's diet/supplements. It is strict,

but seems to work. I may very well have Lyme-or as Bee said my body produced the

bacteria to help itself. I really cannot say for sure which I believe, but this

is working in a lot of ways.

Best wishes,

C.

>

>

> Hi - the tinnitus I was able to stop with the PEMF machine - we hold a coil

as it clicks electromagnetic pulses and boosts our electromagnetic energy.

Evidently, it gave back to the nerves what they needed and the tinnitus stopped

for 6 hours after treatment. If any of you can locate a PEMF machine, like at a

chiropractor's place or PT, you could try it. Stands for pulsed electromagnetic

frequency.

>

> The benadryl is a necessity for me at nighttime, otherwise I don't go to

sleep. I've been doing it for years. I know we're all different, and different

things work for each of us. I do have major trouble with histamine ie hives,

however - I break out with hives when I touch most things. so I have to wear my

old clothes - it's very limiting and one of my hardest residual symptoms. So

what do you think that means re the niacin and the description below about

inducing histamine?

>

> I did the liver detoxigenomic test through the Genova Diagnostics lab and it

showed I have a hard time detoxing in two major pathways. I don't know whether

any of you here are that sensitive to the touch. My Lyme doc wants me to do far

infrared sauna detoxing. - Robin

>

>

>

>

>

>

>

>

> Re: Is a Fibro attack and Autoimmune Attack ?

>

>

>

>

>

>

> Hi Robin,

>

> My tinnitis comes and goes, and if I get sugar or processed foods, I also get

a very itchy ear . If I am tempted, I tell myself, I do not want to feed the

bacteria. About Benadryl, seems I read something about its dangers especially

for the elderly. This is one-

>

> http://www.virginiahopkinstestkits.com/benadryl.html

>

> Also if using, think about why your body produces histamine-it is for a good

purpose-to bring blood, itching, swelling, and healing to an injury, or to get

rid of a substance. I take a flushing niacin 50 mg, which does not always give

me a flush, but it is still helping my body produce histamine-helping to detox,

and open my capillaries, and when you take Benadyl, you are preventing your

bodies detoxing. We want that blood to get to our poor sore muscles. I have very

bad insomnia, and took Ambien, and slept better, but found out it very much

increased my pain. Wish I had found out that earlier. Some doctors say you can

give Benadryl to small children, and people have killed babies at day cares

giving it to them. Neurontin and flexeril help me sleep, but they lose

effectiveness after a while, so got off them. Wish there was a solution to this

sleeping problem, but whatever helps put you to sleep is going to cause some

kind of problem. You did not mention how often you take it.

>

> With concern,

C

[Guest guest]

Hi Robin, Meant to mention the coconut oil will help you detox-internally or

applied- You have to start gradually, and may have to cut back, according to how

much detoxing causes you to be too uncomfortable. Bee also mentions her brother

having chrohns and Lyme and getting better by the diet.

C.

>

>

> Hi Robin,

>

> Sorry to hear about the hives. It seems the Benadyl has not keep your body

from producing histamine, since you will get hives from touching- In Bee's board

if someone get a rash, acne, itching, she says that is the way the body chooses

to detox, and will eventually improve if they stick to the diet, and stay away

from that substance-toxin that may be causing it. The flushing niacin helps

detox, and I do dry skin brushing, and epsom salt baths. Have you tried any of

those? I think Bee mentions saunas, but can't remember much about it. You may

be detoxing more from the skin, because as you say, your other detoxing pathways

are not working well. x

[Guest guest]

Hi - can you tell me who Bee is and what the website is? I'd like to read it. I

will run the niacin question by my Lyme doc the next time I see him - he's very

versed on what every supplement does and also with regard to all my

sensitivities. Can't touch a dry brush, epsom salts are ok. Am definitely

detoxing from the skin. Had to slow down on use of the biomat, since I was

breaking out too much. The benadryl only helps me sleep. I use it at even

higher dose if I have an allergic reaction. I know Lyme patients like coconut

oil. How do you use the cod liver oil? Thx - Robin

Re: Is a Fibro attack and Autoimmune Attack ?

>

>

>

>

>

>

> Hi Robin,

>

> My tinnitis comes and goes, and if I get sugar or processed foods, I also get

a very itchy ear . If I am tempted, I tell myself, I do not want to feed the

bacteria. About Benadryl, seems I read something about its dangers especially

for the elderly. This is one-

>

> http://www.virginiahopkinstestkits.com/benadryl.html

>

> Also if using, think about why your body produces histamine-it is for a good

purpose-to bring blood, itching, swelling, and healing to an injury, or to get

rid of a substance. I take a flushing niacin 50 mg, which does not always give

me a flush, but it is still helping my body produce histamine-helping to detox,

and open my capillaries, and when you take Benadyl, you are preventing your

bodies detoxing. We want that blood to get to our poor sore muscles. I have very

bad insomnia, and took Ambien, and slept better, but found out it very much

increased my pain. Wish I had found out that earlier. Some doctors say you can

give Benadryl to small children, and people have killed babies at day cares

giving it to them. Neurontin and flexeril help me sleep, but they lose

effectiveness after a while, so got off them. Wish there was a solution to this

sleeping problem, but whatever helps put you to sleep is going to cause some

kind of problem. You did not mention how often you tak e it.

>

> With concern,

C

[Guest guest]

Hi Joanne,

haven't been on here in awhile and just read this post of yours. My insight

is a little different than the others. It sounds like you had a panic

attack, with the tightness of chest, difficult breathing and anxiety.

Whatever stress triggered your panic attack, then probably set of fibro.

symptoms such as the pain...A panic attack can come out of nowhere and hit

you quickly--I remember having them when i was a senior in college and

stressed about school stuff.

nne

>

>

> Since this is my first fibro attack in I dont know how long, can I ask you

> all is this the same as what happens to you

>

> Before the attack you might feel basically notmal, (not normal obviously,

> but normal for a fobro person). You might be sat painting a door or cleaning

> a window or something when one of your children, or somebody else you care

> about comes rushing in the house describing some terrible ordeal that they

> claim they need you to sort out immediately. You ask them to speak calmly

> and they instead get loader and loader, more agressive. Your husband walks

> in and starts telling you that you should not be making such a fuss and next

> the dog starts barking

>

> All of a sudden nothing feels real it is like everybody is speaking at the

> same time and everything has gone loud and aggresive, even the TV sounds

> like it has been turned up to max.

>

> as you try to escape from all the coffufle you find your chest has gone

> tight and it is rather hard to breath and an enormous agonising pain has

> just stabed your gut. You try to scurry but everybody seems to be in your

> way, and as you try to get past them you trpip and fumble all the time

> feeling very anxious and afraid

>

> If you are fortunate you do get away but then you have the most awful

> stomach ache and craving fro carbohydrate, the front of you head feels heavy

> and all of a sudden your thoughts have become very confused. Right at this

> moment you could really do with somebody coming to your rescue, but instead

> everybody just starts harping on at you about how dreadful you look and how

> you really need to learn not to let things get to you

>

> Next a tremendous pain begins to pulsate in your hip and then up your spine

> to your neck and behind your eye. Whist this is all taking place you feel

> nauseous like you might throw up and still the thoughts in your head make

> little sense, and often PTSD stuff will emerge

>

> As you try to grapple with all this you find everything you try to hold

> drops out of your hand and as you try to say make yourself a cup of tea you

> find you have put the kettle on with no water in it, just spilt tela and

> coffee on the side and instead of putting the butter in the fridge you have

> just put it in the oven

>

> Pain pulsates through your body like a runaway train, every muscle aching,

> every hjoint aching and even your skin feels tender to touch. You IBS and

> possibly PMs is now in full swing along with allergies, food intollerances

> the lot

>

> You catch yourself in the mirror, you are pain and gaunt looking, you look

> ill, but apparently everybody else is telling you you dont look too bad.

>

> As the attack waines and your mind begins to return you are so exhausted

> you can barely speak. Yo just want to get away from everybody and have a

> good rest but because the attack has gone on for so long you are behind with

> everything so you have to now catch up. The whole time feeling like you have

> been beaten up and so dreading another attack soon

>

> Is this Fibro, is this how it is for you? how many of you beleive an attack

> like this is an autoimmune attack. I mean howmany of you beleive this attack

> is actually a physical assault on you from your very own immune system

>

> Kindest regards

>

> Joanne

>

>

>

>

>

>

>

>

>

>

>

>