Hemochromatosis

[Guest guest]

Hi Everyone,

As you can see the reason for my writing is Hemochromatosis. It is iron

overload disease. I started researching it a year or two ago because I read

something from one of the conferences from a CDC person who thought that the

borellia used iron for food (or something like that).

I went to my doctor and asked for the test (not my lyme doc) and he said no

because I wasn't orange. This is not the case with most iron overloaded

individuals and if it does happen it is usually in the end stage when

cirrhosis occurs. It is a genetic type defect thing where our body absorbs

too much iron from the food we eat.

Coincedentally last year I had to be transfused (4 units). After I recovered

from surgery I noticed how well I felt and thought I just needed " new blood. "

I have not been on any abx since. Anyway about 7 mos later I started with

joint pains and etc. again and thought I was relapsing. Now I am not so sure

and have requested this test again (from LLD doc). The only treatment for

iron overload is phlebotomy - getting rid of excess iron by giving blood.

YOU WILL NOT SEE IT ON ROUTINE LAB TESTS

YOU HAVE TO HAVE 3 SPECIFIC TESTS THAT CAN BE RUN AT ANY LAB

serum iron

total iron binding capacity (divide these two)

serum ferritin

BACTERIA AND CANCER LOVE IRON

YOU CAN BE IRON OVERLOADED ANEMIC

Please everyone go to your doc and make him do these tests. DO NOT LET HIM

TELL YOU NO. DO NOT LET HIM TELL YOU THAT INFLAMMATORY CONDITIONS WILL

ELEVATE YOUR FERRITIN LEVELS (they will a little but not alot). THERE IS A

CERTAIN AMOUNT OF INFLAMMATION ASSOCIATED WITH IRON OVERLOAD. Check out the

American Hemochromatosis Foundation website. This may be at least one reason

why some of us can't get well. This may be the cause of our symptoms for some

of us. I did some researching and it may be that antibiotics (especially the

big ones) would take down iron stores possibly resulting in us feeling better

when we take them.

I guess you can tell by my writing that this is very important to me. I would

like to get well and I would like you to also.

Take care and let me know how the tests turn out.

Kathleen

[Guest guest]

Hello Kathleen:

Thanks for your information and suggestions. This seems like

a very interesting avenue to explore, and I will insist my doc

test me when I see him in July.

It's best not to leave ANY stone unturned!!!!!

sincerely,

Fransea

NJ Seashore

[Guest guest]

Kathleen, Your message was very interwesting. Have you gotten your tests back.

Did they say you had hemocromatosis? Are you still off antibiotics and are

you currently being treated for the hemocromatosis.Please write when you get a

chance Feel better -Val

[Guest guest]

Val,

No I do not have my tests back yet actually I don't even know if they have

been run yet. I found out my husband has it (it is not contagious, it is

genetic) because he was being checked for liver problems and it reminded me

that I had wanted to have that test done 1 year or so ago and my not-lld said

no because I wasn't orange. Anyway I had been to my lld doc several days

before and she was running tests on various virus' and I faxed her the info

(she is 2 hours away). Anyway my guess is that the blood was already gone or

used and she will have to draw more for this. I see her again on 4/6.

When I started thinking and researching I realized how much this disease fits

me more even than Lyme. It is not that I believe I never had lyme I just

think that maybe the lyme is dead and this is still causing me problems.

I even think my kids have it. My daughter has had joint pains and ADD and my

son started with these wierd stomach problems about 2 years ago. If you read

about hemochromatosis you will find that initially it will start with joint

pains, stomach problems. Eventually it will do serious damage - especially to

your liver. If my husband and I both have it then chances are both kids do

to.

It appears that your intestines absorb too much iron from your food. This

might explain my chronic constipation. The longer you have it the more damage

it does - the symptoms will get worse. For 6 months after I lost that blood

EVERYTHING was better. No pain, lots of energy, mental clarity, no hair loss.

Then everything started coming back. The treatment is to get rid of several

units of blood to get your levels down to normal (once or twice a week for

however long it takes) then only several times a year either when your

ferritin levels rise or when you start feeling symptoms. Well since I dumped

4 units at one time that probably leveled me off and then 6 months later I

needed to dump more. The pain isn't really too bad now but I do have it. The

fatigue is really bad. Hair loss again. Amenhorea (sp?) Interestingly after I

went to the doc a couple of weeks ago - they drew 5 vials of blood the next

day I kind of felt better!!

Now to back up a little. My husband has elevated liver enzymes. He had a

surgery on his knee and then got a post-op infection - staph. He had to have

IV abx and they drew blood 2x a week. We got copies of the bloodwork or we

called everytime they drew blood just to keep and eye on the white count and

sed rate and we noticed how the liver enzymes were coming down. We thought

you must have a liver infection too because abx seem to be working on your

liver too. Well I did find out that first - heavy abx will take down your

liver enzymes a little and PLUS he was having blood drawn out twice a week. I

realize it doesn't sound like much blood but apparently monthly periods help

women get rid of some and we all know that isn't quite a pint of blood is it?

I saw one report on the Canadian - Hemo site that said sometimes the first

joints to hurt are the 1st and 2nd fingers. My first finger hurts sometimes

so bad and my daughter several times has brought me her finger and said it

really hurts.

Wierd huh? Thanks for caring and asking. Please get this test. It appears

that it is so common that I am thinking probably at least half (!!!) of us

have it. Ok I really went out on a limb here but I think I am right. It runs

even higher in those with Irish, Celtic, ish, British heritage. Guess

that is where all that red hair comes from huh. Also don't let your doctor

base his dx on elevated liver enzymes - it is not true. If your liver enzymes

are elevated it is because there is already liver damage. The purpose is to

find out if you have it so you can prevent damage.

Take Care,

Kathleen

Kathleen, Your message was very interwesting. Have you gotten your tests back.

Did they say you had hemocromatosis? Are you still off antibiotics and are

you currently being treated for the hemocromatosis.Please write when you get a

chance Feel better -Val

[Guest guest]

In a message dated 3/25/1999 8:30:25 PM Eastern Standard Time, Fyikat@...

writes:

> It appears that your intestines absorb too much iron from your food. This

> might explain my chronic constipation. The longer you have it the more

> damage

> it does - the symptoms will get worse. For 6 months after I lost that

blood

> EVERYTHING was better. No pain, lots of energy, mental clarity, no hair

> loss.

> Then everything started coming back. The treatment is to get rid of

several

> units of blood to get your levels down to normal (once or twice a week for

> however long it takes) then only several times a year either when your

> ferritin levels rise or when you start feeling symptoms. Well since I

> dumped

Kathleen:

I am really beginning to wonder if this indeed is a major problem

for me. I normally have very loose stools...but about a month ago

had a serious problem with constipation and then hemies and

lots of bleeding!!! I was bleeding daily several times for two

weeks!!!! Its funny...but since that time I HAVE felt a bit better,

to the point that I was able to sit and sweep my kitchen and

iron my spring curtains so my son could hang them for Easter!!!

I have serious joint pain....especially my right knee and my

fingers (1st and 2nd mostly!!!!!!) I also have elevated liver enzymes

(which I have had for at least a year...but atributed it to my

having IV antibiotics several times...) Maybe my loss of blood

from the hemies actually helped me!!!!! I will have to keep a

record of any recurrences.....by the way I have not been constipated again

since then.....so if that returns I will KNOW something is up!!!!!

Thanks for the info!!!!!!!!!!!

luv,

Fransea

NJ Seashore

[Guest guest]

Kathleen,

Did you have high liver enzymes like your hubby? Do keep us posted what

you find out when you see your doc on April 6? Keep in mind, Lyme disease

is not called " The Great Imitator " for nothing. But, I do hope you find

that this is your problem as the solution or treatment sounds pretty good.

Hugs,

Marta

>Now to back up a little. My husband has elevated liver enzymes. He had a

>surgery on his knee and then got a post-op infection - staph. He had to

have

>IV abx and they drew blood 2x a week. We got copies of the bloodwork or we

>called everytime they drew blood just to keep and eye on the white count

and

>sed rate and we noticed how the liver enzymes were coming down. We thought

>you must have a liver infection too because abx seem to be working on your

>liver too. Well I did find out that first - heavy abx will take down your

>liver enzymes a little and PLUS he was having blood drawn out twice a week.

I

>realize it doesn't sound like much blood but apparently monthly periods

help

>women get rid of some and we all know that isn't quite a pint of blood is

it?

>

[Guest guest]

Hi Kathleen, thank you for the info. I think that is really interesting. Do

you think people with lyme also have this hemocromotosis and it is making the

situation worse or do you feel that people do not have Lyme anymore and just

have this hemocromotosis. I think a combination is possible and maby treating

hemo. would help, but there is too much research out there supporting active

infection in chronic lyme paitients and so I feel the lyme is still present in

many of us. I am very interested to hear how your results come out . Please

let us know. Currently is your husband being treated? Has anyone else in your

family (husband, daughter, son) been treated for lyme? Hope you are feeling

better-Val

[Guest guest]

Hi Kathleen,

I have a pretty good article I got a year or so ago. A fellow lymie has it

and it is genetic in her family. If you want a copy send me your address, via

private e-mail. Mine is Cslyme@... and I will send it to you.

Connie

[Guest guest]

>>>Hi Kathleen, thank you for the info. I think that is really interesting. Do

you think people with lyme also have this hemocromotosis and it is making the

situation worse or do you feel that people do not have Lyme anymore and just

have this hemocromotosis. I think a combination is possible and maby treating

hemo. would help, but there is too much research out there supporting active

infection in chronic lyme paitients and so I feel the lyme is still present in

many of us. I am very interested to hear how your results come out . Please

let us know. Currently is your husband being treated? Has anyone else in your

family (husband, daughter, son) been treated for lyme? Hope you are feeling

better-Val

Val,

I think both could be happening. Some people may not have lyme at all and

some people may have hemo and not lyme. Most infections would be harder to

get rid of if you have too much iron so maybe that is one reason people can't

get better. If it is fairly common then you know at least some of us has it.

From what I know I don't know anyone (lymies) that have been tested for it.

My husband is not currently being treated. We really don't have the dx yet

for him but we have the blood work that shows a seriously high iron level.

His condition is one of those that we have to wait and wait and wait some

more. We haven't really even found a liver specialist that we like yet (you

thought LLD's were hard).

No one else in my family has been treated for Lyme. My liver enzymes have

never been elevated although my dingbat non-lld doc wouldn't run it because

insurance companies don't like it because it is a $70.00 test!!! That is a

quote. But my lld who is now my md also did run liver profile and kidney.

Hooray. I will let you all know what I find out.

Hugs (big ones)

Kathleen

[Guest guest]

H Kathleen, What meds were you treated with for Lyme? Are you currently taking

any medication for it. I was just reading a little on hemocromotosis and found

out that it is hereditary. It is the most common abnormal gene known. There is

an Iron Overload Diseases asssociation that might be helpful to check out. The

e-mail address is iod@...

the web site is http://www.ironoverload.org I will try and look into it too.

hope you are feeling better. oh P.S. Did you ever have your children tested

for Lyme.

-Val

[Guest guest]

Hello Lyme Friends:

Check out FAMILY CIRCLE MAGAZINE, April 20, 1999 issue

(which just came out) for the cover article entitled " The Silent

Disease Doctors Miss " located on page 62. This article relates

to iron overload (hemochromatosis) and anemias.

Fransea

NJ Seashore

[Guest guest]

Yes I have low iron levels, but I also had surgery in December and was

transfused with 2 units of blood. I was not happy about that but it saved my

life.

Sandy (~.~)

[Guest guest]

Hello everyone! I have a question: Does anyone with lyme disease have

low iron levels? I have a very low ferritan level. It is my

understanding that the spirocetes deplete some of the stored iron.

Thanks,

KAREN

[Guest guest]

I would like a copy of any information regarding the genetics of this being

in the family also, if its possible. My email is IAMAVIPTWO@...

tHANKS gAIL

[Guest guest]

I recently found out that my first cousin's daughter has

hemochromatosis, a disease in which iron builds up in various places

in the body. She was concerned that I might have it, and urged me to

get checked for it.

So at my appointment on Wednesday, I asked my rheumy if he would check

my iron. He agreed to do it. He said that I was the second patient

this week who had found out about a family member with the disease.

He checked several things connected with iron. Everything was within

normal limits except transferrin, which was slightly high. From what

I've read, being high is more indicative of an iron deficiency rather

than an iron overload.

I am relieved that I don't have to add another disease to my

repertoire. I thought that I had more than my quota already, with RA,

diabetes, Fuchs' corneal dystrophy, and a history of breast cancer and

migraines. Yippee!

Sue

[Guest guest]

Hi ,

Bee is away until the middle of this week and as a moderator, I don't feel

comfortable answering this question. If you don't get a response from Bee by

Friday, feel free to repost it.

>

> Hi Bee

>

> My friend has a lot of the symptoms of yeast problems but also has

Hemochromatosis (hereditary disease of too much iron)

http://www.hemochromatosis.org/index.asp. The diet recommended for that is

almost opposite to your diet, except for reducing alchohol and sugar. She also

has caelic disease.

>

> Is there are way she can reduce the iron in her blood stream without avoiding

meat and Vit C? She can't eat meat or Vit C. If not, what can she eat?

>

> thanks

>

>

>