Hereditary Hemachromatosis (HHC) and RA, Possible misdiagnosis

[Guest guest]

I just wanted to share some info that I came across. Long story short, both my

parents are positive for a recessive genetic disease called Hereditary

Hemachromatosis which gives me a 1 in 4 chance of having this disease, HHC. One

of the symptoms is joint pain. In researching this (hopeful that I might have

something less severe than RA), I found that sometimes people are misdiagnosed

with RA when they really have HHC. One can have a positive Rheumatoid Factor

with HHC, but rarely is the anti-ccp elevated in HHC. So it is doubtful that I

have been misdiagnosed as my anti-ccp is sky high, but I just wanted to let

others know about this, in case there is some question of your diagnosis. I am

seeing improvement being on minocycline, MWF, 100mg and also taking Augmentin

for a tooth infection. So I do believe Antibiotic Protocol is the cure for me.

For those who want to know more about HHC: It is a condition where too much iron

is absorbed through the gut. The body only has limited ability to excrete iron,

so iron builds up over the years. Symptoms do not show up until one is 40 or 50

years old. In some people, the iron deposits in the joints, typically in the

largest knuckles of the fore and middle fingers. It can also cause heart

disease, diabetes, and other life-threatening conditions as the iron accumulates

over the decades. The treatment is blood-letting. Just getting rid of the iron

through removing blood. At first it is a unit or two per week until the iron

levels are brought down, then 1 to 6 month intervals to keep it in check. Rather

an odd treatment and amazing in its simplicity in today's world of

pharmaceuticals.

Hope this helps somebody. Amy

[Guest guest]

Amy,

This is from the question and answers.. Augmentin is a penicillin

derivative. I don't know much more than what is written here...maybe ETHEL

could help us out!

Testing for strep before starting this therapy is extremely important.

According to Dr. Brown and others, running the ASO titer can produce a

'false negative.' In such cases, either the Anti-DNAse B (strep) test, also

called the 'ADB' test, and/or the Streptozyme test would be better. All

strep tests can yield false negative results, so the combination of both the

ADB and the Streptozyme test may be necessary in certain patients. The

reason for this is that the ASO test measures just one streptococcal enzyme,

whereas the other strep tests measure several different streptococcal

enzymes, thereby increasing the chances of detecting patients who are

'carriers' of strep. When active streptococcus is present, even at low

levels, it must be treated.

If a patient had a history of strep, Dr. Brown would prescribe amoxicillin

or ampicillin even in the absence of a positive titer. According to

published research oral clindamycin is superior to either penicillin or

other antibiotics because clindamycin best inhibits the 'encapsulated' form

of streptococcus.

.. Were you tested for strep? If the results were positive, treatment should

be prescribed. (See Section 12.) The strep organism can be very difficult to

eradicate, so even after the titer returns to normal, the patient should be

monitored for some time for recurrence. The goal of the therapy is to remove

antigen wherever it may be found in the body in order to achieve optimum

benefit from this therapy.

Looks like you should stay on a type of penicillin till you have a negative

strep test. There were articles written long ago about patients given

BICILLIN which is a very potent penicillin given IM. If you have dr. Brown's

book it may be in there.

Good luck,

Cooky

I just wanted to share some info that I came across. Long story short, both

my parents are positive for a recessive genetic disease called Hereditary

Hemachromatosis which gives me a 1 in 4 chance of having this disease, HHC.

One of the symptoms is joint pain. In researching this (hopeful that I might

have something less severe than RA), I found that sometimes people are

misdiagnosed with RA when they really have HHC. One can have a positive

Rheumatoid Factor with HHC, but rarely is the anti-ccp elevated in HHC. So

it is doubtful that I have been misdiagnosed as my anti-ccp is sky high, but

I just wanted to let others know about this, in case there is some question

of your diagnosis. I am seeing improvement being on minocycline, MWF, 100mg

and also taking Augmentin for a tooth infection. So I do believe Antibiotic

Protocol is the cure for me.

For those who want to know more about HHC: It is a condition where too much

iron is absorbed through the gut. The body only has limited ability to

excrete iron, so iron builds up over the years. Symptoms do not show up

until one is 40 or 50 years old. In some people, the iron deposits in the

joints, typically in the largest knuckles of the fore and middle fingers. It

can also cause heart disease, diabetes, and other life-threatening

conditions as the iron accumulates over the decades. The treatment is

blood-letting. Just getting rid of the iron through removing blood. At first

it is a unit or two per week until the iron levels are brought down, then 1

to 6 month intervals to keep it in check. Rather an odd treatment and

amazing in its simplicity in today's world of pharmaceuticals.

[Guest guest]

Interesting Amy. Thanks for sharing.

Suzanne

>

> I just wanted to share some info that I came across. Long story short, both my

parents are positive for a recessive genetic disease called Hereditary

Hemachromatosis which gives me a 1 in 4 chance of having this disease, HHC. One

of the symptoms is joint pain. In researching this (hopeful that I might have

something less severe than RA), I found that sometimes people are misdiagnosed

with RA when they really have HHC. One can have a positive Rheumatoid Factor

with HHC, but rarely is the anti-ccp elevated in HHC. So it is doubtful that I

have been misdiagnosed as my anti-ccp is sky high, but I just wanted to let

others know about this, in case there is some question of your diagnosis. I am

seeing improvement being on minocycline, MWF, 100mg and also taking Augmentin

for a tooth infection. So I do believe Antibiotic Protocol is the cure for me.

>

> For those who want to know more about HHC: It is a condition where too much

iron is absorbed through the gut. The body only has limited ability to excrete

iron, so iron builds up over the years. Symptoms do not show up until one is 40

or 50 years old. In some people, the iron deposits in the joints, typically in

the largest knuckles of the fore and middle fingers. It can also cause heart

disease, diabetes, and other life-threatening conditions as the iron accumulates

over the decades. The treatment is blood-letting. Just getting rid of the iron

through removing blood. At first it is a unit or two per week until the iron

levels are brought down, then 1 to 6 month intervals to keep it in check. Rather

an odd treatment and amazing in its simplicity in today's world of

pharmaceuticals.

>

> Hope this helps somebody. Amy

>