LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Fascinating question about babesia

 - UBBFriend: Email this page to someone!    
Author Topic: Fascinating question about babesia
lou
Frequent Contributor (5K+ posts)
Member # 81

Icon 1 posted      Profile for lou     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well, if I didn't say it was fascinating, maybe few people would read it!

Have any of you babesiods (people with babesia), had your iron saturation levels checked? Mine came up high and doc says remove drastic amounts of blood indefinitely--not a pleasant prospect for a hard stick. No blood in this turnip apparently. It turns out that I am a carrier for the iron overload disease called hemochromatosis. Two or more gene mutations are needed to be considered an actual case, as opposed to one for a carrier.

So this gene and high iron saturation has convinced my doc that major bloodletting (300ml) needs to be done. AAACCCKKK!!!!!!

However, I think this gene is a red herring. Which is why I want to know if others with babesia have been tested for iron levels. There are published references saying that:

1. Babs causes hemolysis (busts up red blood cells)

2. Malaria also causes hemolysis, and a subsequent high level of iron saturation (actually % transferrin saturation).

3. Malaria and babesia have similar disease processes and are treated with the same meds.

So, if this is being caused by babs, major bloodletting is not a good treatment. Re-treating the babs in indicated instead. If I don't come up with a + babs test again, though, it is going to be a hard sell.

Doc says no connection has been made with babs and iron overload. But, little research ahs been done on human babesia. They just haven't looked. And some of the published lit on treatment is questionable, like the one that claimed to have cured all babs cases with 7 days of treatment.

Do you think I am nuts?

Babs doesn't just ride the bloodstream, like a merry-go-round. It is doing damage of a kind that no one has researched adequately. Why wouldn't iron overload be one of those mechanisms? It is known to cause organ damage.

Did anyone read this far?

Has anyone been checked for iron sat. levels?


Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
jen13
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
You are probably both right. Having one gene puts you at somewhat higher risk, and then perhaps babesia increased it as you speculated. However if you're very high right now it is a danger to all your organs so you might need the treatment he recommends SHORT term, and then re-treat babs. If while treating babs your iron overload goes down....that would support your hypothesis.

Maybe you can reason with him to do both.
------

A mutation in a gene that regulates the body's handling of iron increases the risk of dying from heart disease. The finding supports the results of previous studies, which suggested that high levels of iron increased the risk of heart disease. Humans have two copies of HFE, the gene that controls the body's storage of iron. Abnormalities in both copies result in a condition called hemochromatosis, in which abnormally high levels of iron accumulate in the body, resulting in dysfunction of several organs.

Those with an abnormal iron gene faced a 52% increased risk of heart attack with each 100 microgram increase in ferritin, while the risk in those with normal iron genes varied little with ferritin concentration. Male carriers of the common hemochromatosis gene mutation are at 2-fold risk for first (heart attack) compared with noncarriers. Carriers are a large part of the population. Something like 10% to 30% of the population carry at least one gene for hemochromatosis. Full-blown hemochromatosis affects about 1 in 200 individuals. Carriers almost universally don't know that they are at increased risk... They have almost no increase in iron stores, but that small increase is significant and that small increase is probably what caused the increased incidence of heart disease deaths.


IP: Logged | Report this post to a Moderator
bpeck
Frequent Contributor (1K+ posts)
Member # 3235

Icon 1 posted      Profile for bpeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just completed the 5 day ARTEMOS therapy
for Malaria (for Babesiosis)
Go back to around the 15th of Jan. and read
my posts titled "Babesia Treatment started".
I tested positive for Babesia, and had also have a;so had damaged
RBCs and RBC fragments in my blood on neumerous occassions previously.

If my drenching sweats stop, and my RBC profile ever becomes normal, I'm going to assume Babs is dead... of course I won't know till a few months pass, and all my CBC profiles are completed. I had blood drawn thru the treatment.

Barb


Posts: 1882 | From VT | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
bpeck
Frequent Contributor (1K+ posts)
Member # 3235

Icon 1 posted      Profile for bpeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh PS:
My Hematocrit was always around low normal, or just below (slight anemia).
RBCs were too large (indicating accelerated RBC production- Macrocytosis) and not enough of them (indicating they didn't live to long.. i.e.
probably damaged from babs leaving them after replication).

Most people with Babs are anemic.

If you've tested positive for Babs.. then why not
decide on what treatment you want.

Malaria infects 400 million people world wide, and is the #1 killer in developing countries. I chose this therapy because it's used extensively in these countries
and there's quite a bit of literature on it's sucess.

Do a search on Artemether on Medline.
Barb

[This message has been edited by bpeck (edited 18 January 2003).]


Posts: 1882 | From VT | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

Icon 1 posted      Profile for lou     Send New Private Message       Edit/Delete Post   Reply With Quote 
Not many people interested in this topic, apparently! Probably haven't had their iron levels checked.

Because I was trying to keep my previous post to a reasonable length, I left out a few things. Like the fact that the iron level dropped back to normal when I stopped taking a multivitamin with iron (because I didn't know about the gene at that point) and stopped taking Vitamin C. These things were mentioned in the information that came with genetic testing kit from U. of MI.

However, since then I have been taking magnesium citrate, and now find out that citrate and ascorbate make the iron problem worse! So, switching to magnesium lactate and adding calcium (wasn't taking enough), may be enough to bring the reading back down without removing large amounts of blood. Hope so anyway.

May have some questions for you bpeck on your babs treatment. Apparently people on all regimes have failed to eliminate these germs, and had to be retreated. I think it is a lot harder to get rid of than mainstream medicine is admitting.


Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
bpeck
Frequent Contributor (1K+ posts)
Member # 3235

Icon 1 posted      Profile for bpeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lou:
Have you taken a therapy for Babs and it failed?

The genetic problem of iron saturation is called something like Thalissima (I'm sure that's spelled wrong).
Removing a pint of blood is one the way they remove iron overload from the body.. and I don't think that's much different than giving blood..in that your body won't miss it much.

But I don't see how that would affect Babesia in any way.
What does you CBC look like (i.e status of your RBCs (size, quantity etc.)).

Barb


Posts: 1882 | From VT | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

Icon 10 posted      Profile for Tincup         Edit/Delete Post   Reply With Quote 
Hey Lou..

Well... ya suckered ME in here with the "fascinating" title... hehehe

My head is not screwed on right tonight.. but I did want to mention ....

For years I would feel so yicky... and when ever I would go to the lab and let them draw blood for testing... I felt "instantly" better. By the time I walked outside I was basically feeling "new"... I had NO clue why.. and figured I was just plum nuts!

I didn't know about the Babesia at the time. What I had figured out was ... when you loose blood.. you automatically make new blood. These cells are healthier and happier for a while.. till the Babesia hits them too.

So... perhaps a small amount of blood letting would be something to try? If you look at it the way I did anyhow...

The protocol for full blown hemochromatosis seemed a bit much for me... and I was not too sure I should/could?? And like you.. the theory I had was to treat babesia first.. and see what happened.

I was eventually tested for the iron (chiropractor "guessed" it might be and ordered tests) and mine was up also... then that tidbit kinda got lost in the shuffle when I realized I might have Babesia. Treatment for babesia has made me much better and I do feel less "yicky" than I did.

I agree with Jen where she says short term might be good... and then retreat for Babesia.

Mepron is expensive.. no doubt. If you start treating the babesia that is still there after a blood letting... with some "new and improved blood cells" ... would it...

1. Make the mepron more efficient in the blood and give a better treatment because it addresses LESS bad stuff?? (Told ya I was tired)

2. Would it give you a leg up on the process since you have a number of good cells to "tide you over" during treatment?

3. If you treat bad red blood cells... wouldn't that be a waste of the Mepron sort of in a way?

Obviously this is just my speculating here.. but maybe the thoughts will help you somehow?

Now.. I also made a few posts on the RDW's a while back... Red cell distribution width.. found on normal lab work when a CBC is run.

The way I diagnosed myself with babesia was by noticing the RDW reading was ALWAYS very high.. even when other things were normal. I finally had a copy of all my lab work and NO ONE had bothered to tell me they were abnormally high (real high) or try to figure out why they were so high.

Only about a handful of things will cause this problem... and one was babesia. That is when I decided to be tested for babesia (it took TWO stinking years to convince a doctor to even test me.. even with all the symptoms.. medical literature... and proof there was something wrong). Actually they never would test me and I ended up asking the chiropractor to sign the lab work....

Anyhow.. MY theory was.. the RDW high readings were caused by chronic babesia. Therefore.. proper treatment would "fix" things.

BINGO... Just recently I had a blood count done after several months of treatment.. and for the first time in YEARS the reading was actually NORMAL!!!! I thought it might help lower the reading... but never expected it to drop into the normal level that fast. I was often 2 times the highest range number for RDW's.

Also... I was anemic too and it got better with proper Babesia treatment.

So.. keep investigating and looking out for your own self... good for you!

I don't know the answers.. but I hope I have given you some things to think about.

PS... You said..

"Do you think I am nuts?"

PLEASE don't make me answer that....

I like you too much for that!


Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
lou
Frequent Contributor (5K+ posts)
Member # 81

Icon 1 posted      Profile for lou     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just a short P.S. to this: Have been treated already for 4+ months with malarone. Blood smear came back neg, waiting for pcr results. But the pcr lab says they only test for B. microti, and I have WA-1. So, we shall see.

These are uncharted waters, and me without a compass.


Posts: 8430 | From Not available | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Curley911
LymeNet Contributor
Member # 2205

Icon 1 posted      Profile for Curley911     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lou, I think Fascinating applys! Hemachromatosis runs in my family members who have lyme; some test + for babs some not but I know they are only testing the blood in the tube drawn leaving all those other pints running around my body untested.

So like Tincup points out, self diagnoses of babs by looking at RDW readings is possible in my opinion. Very clever Tincup!

My babs has tested neg. the last three times for three months or so. Now I'll ask my Dr. to run an iron saturation test, that will be FASCINATING!


Posts: 982 | From Florida | Registered: Feb 2002  |  IP: Logged | Report this post to a Moderator
Marnie
Frequent Contributor (5K+ posts)
Member # 773

Icon 1 posted      Profile for Marnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bb does NOT need iron, but many other bacteria do...so...the body defenses kick in and you go into a "save iron" mode. Add that to hemochromatosis...have heard you will feel much BETTER after blood letting per month.
Posts: 9481 | From Sunshine State | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
bpeck
Frequent Contributor (1K+ posts)
Member # 3235

Icon 1 posted      Profile for bpeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
Marnie's correct.
Babesia protozoan eat the protein inside
the RBC (Hemoglobin) and leave the iron.
This is why hematocrit is usually low and people are anemic with Babs (or malaria).
The infection results in hemolytic anemia if it's severe.

Another anemia (caused by Thalassemia looked it up this time) is a genetic disorder building hemaglobin and there are other really serious symptoms with this condition.

The condition your dr. says you have
(hemochromtosis) is an iron overload problem.. and that in itself (iron overload)
can cause alot of symptoms (fatigue, muscle
soreness. irritability, and especially inflammation... I had a horse with this condition and it took a year to straighten him out)

If he's sure you have this, then I'd sure take it seriously..
Why not get a second opinion?
Barb


Posts: 1882 | From VT | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
Beverly
Frequent Contributor (5K+ posts)
Member # 1271

Icon 1 posted      Profile for Beverly     Send New Private Message       Edit/Delete Post   Reply With Quote 
Up.
Posts: 6641 | From Michigan | Registered: Jun 2001  |  IP: Logged | Report this post to a Moderator
graneet
LymeNet Contributor
Member # 3112

Icon 1 posted      Profile for graneet     Send New Private Message       Edit/Delete Post   Reply With Quote 
My brother when he was a baby got very sick they thought he had lukemia and gave him blood. They did not know then what he had. Recently he was very tired etc and i told him to get checked for heptitus which he did not have but the doctor found he had hemochromitosis his blood count was 1400. He had to give blood for about four or five times seems.

His blood count is better now but he had to quit cooking with iron skillet and not eat a lot of steak however he didnt stick to that one very well. But it seems both our parents familys had the gene. All of the men in our family died from heart attacks and last year my brother had a mild one.

However i dont seem to have it least they say i dont but im not sure if they are doing the right test like his doctor did.

IT IS not something to ignore if your a man for sure.

He hasnt had to have blood taken in a few years now so it can be brought down and he does have to watch it of coarse.

Graneet


Posts: 655 | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 6 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Is there anything on a CBC with differential that would indicate a problem with the iron?

------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Mathias
Frequent Contributor (1K+ posts)
Member # 5298

Icon 1 posted      Profile for Mathias     Send New Private Message       Edit/Delete Post   Reply With Quote 
My RBC has started going low, HCT is low, RDW is high.

I have shortness of breath that just won't go away.

Does this sound like Babs? Based on what I just read, I think it does. My LLMD just decided to put me on Mepron/Zithro so she is starting to suspect it also.

I have not tested positive. Thoughts?


Posts: 1250 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
david1097
Frequent Contributor (1K+ posts)
Member # 3662

Icon 1 posted      Profile for david1097     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hello

My sleep is so fractured as of late that I am up a few hours at a time, including these late night sessions... Then back to sleep for a few more hours.

Anyway.... When human medicine fails to explain anything look to veterinary medicine.
I have been told that veterinary medicine is at least 10 years ahead of human medicine.

As it turns out, there is a lot known about babesia in animals, after all they are a viable host where we catch this stuff from. I did a quick google scan some time back and found an interesting site
http://www.vet.uga.edu/vpp/NSEP/babesia/ENG/

that has necroscopoy pictures and everything. Amoung other things It looks like babesia also clogs up the microvasculature in the brain and cuases neurological problems also. They have some good photos of all this stuff.

On the blood letting. I just read the fda has approved leeches for this purpose. It is supposed to be painless but......

Hope that helps.



Posts: 1184 | From north america | Registered: Feb 2003  |  IP: Logged | Report this post to a Moderator
panther
Member
Member # 5348

Icon 1 posted      Profile for panther     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hemochromatosis figures into the differential diagnosis of lyme. It is multisystemic, and can cause many of the same problems lyme does, including brain problems. It is also the most common genetic disease in the USA. There are several blood tests which can be performed, but liver biopsy is the gold standard. If you have accumulated iron in your liver biopsy, you need to begin the bloodletting at once! Actually, my gosh, this could be a godsend for you. Hemochromatosis can be effectively treated, unlike lyme.

quote:
Originally posted by lou:
Well, if I didn't say it was fascinating, maybe few people would read it!

Have any of you babesiods (people with babesia), had your iron saturation levels checked? Mine came up high and doc says remove drastic amounts of blood indefinitely--not a pleasant prospect for a hard stick. No blood in this turnip apparently. It turns out that I am a carrier for the iron overload disease called hemochromatosis. Two or more gene mutations are needed to be considered an actual case, as opposed to one for a carrier.

So this gene and high iron saturation has convinced my doc that major bloodletting (300ml) needs to be done. AAACCCKKK!!!!!!

However, I think this gene is a red herring. Which is why I want to know if others with babesia have been tested for iron levels. There are published references saying that:

1. Babs causes hemolysis (busts up red blood cells)

2. Malaria also causes hemolysis, and a subsequent high level of iron saturation (actually % transferrin saturation).

3. Malaria and babesia have similar disease processes and are treated with the same meds.

So, if this is being caused by babs, major bloodletting is not a good treatment. Re-treating the babs in indicated instead. If I don't come up with a + babs test again, though, it is going to be a hard sell.

Doc says no connection has been made with babs and iron overload. But, little research ahs been done on human babesia. They just haven't looked. And some of the published lit on treatment is questionable, like the one that claimed to have cured all babs cases with 7 days of treatment.

Do you think I am nuts?

Babs doesn't just ride the bloodstream, like a merry-go-round. It is doing damage of a kind that no one has researched adequately. Why wouldn't iron overload be one of those mechanisms? It is known to cause organ damage.

Did anyone read this far?

Has anyone been checked for iron sat. levels?



Posts: 45 | From Stillwater, OK, USA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Marnie
Frequent Contributor (5K+ posts)
Member # 773

Icon 1 posted      Profile for Marnie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Tincup made a connection between RDW and babesia many months ago! Brilliant "find"!

Below is a combination of old posts of mine and other files pulled from my 'puter:

Don't freak about this first abstract...where there's a will, there's a way. Below are possible helpers to reduce the iron too!

By Daniel DeNoon
WebMD Medical News Reviewed By Brunilda Nazario, MD
on Wednesday, October 22, 2003

Oct. 22, 2003 -- Iron deposits deep in the brain may cause multiple sclerosis, new imaging studies suggest.


The findings come from studies of computer-assisted brain scans using a specialized magnetic resonance imaging (MRI) device. University at Buffalo, N.Y., researchers Rohit Bakshi, MD, and colleagues are the first to use this technique to study multiple sclerosis. Bakshi reported the findings at this week's annual meeting of the American Neurological Association in San Francisco.


Multiple sclerosis has been considered a disease of the white matter in the brain and spinal cord -- the neural pathways that allow areas of gray matter to communicate with one another.

But the new findings link iron deposits in the gray matter to movement and thinking impairments in multiple sclerosis.


"If we're going to treat this disease, we have to know where the damage is," Bakshi says in a news release. "Traditionally, we thought MS was strictly a white-matter disease. ... We were able to visualize gray matter structures deep in the brain of MS patients and found some to be atrophied."


These areas of brain damage contained abnormally high levels of iron. It's not yet clear that the iron is the cause of the brain damage. It could be that dying brain cells leave a trail of iron behind.


Walking, Thinking, and Gray Matter


Bakshi's team put 41 multiple sclerosis patients through a walking test. They also gave tests of learning, speed of information processing, and memory to 28 MS patients.


The more unnatural darkness the brain scans saw in a patient's gray matter, the worse the patient's MS symptoms. It was the only factor studied that independently predicted impaired walking and thinking.


"We suspect that MS patients have defective blood-brain barriers, the cell layer that prevents potentially toxic substances from entering the brain," Bakshi says. "Excessive iron entering the brain may damage the deep gray matter structures."


Possible Treatment


If iron is indeed the culprit, it seems possible to do something about it. Bakshi's team is exploring two ideas. The first is simply to remove excess iron from patients' bodies, and then to devise a way to prevent future iron build-up.


If that is impractical, it may be possible to prevent iron from killing brain cells. The excess iron may be causing free radicals -- extremely reactive molecules that damage brain cells. Antioxidants -- such as vitamins C and E, or even more powerful agents -- might mop up free radicals before they do their dirty work.


Even if the iron deposits are the effect, rather than the cause, of brain cell death, the study still offers a way to measure the severity of MS and the efficacy of new treatments.

--------------------------------------------------------------------------------


SOURCES: American Neurological Association 128th Annual Meeting, San Francisco, Oct. 19-22, 2003. News release, University at Buffalo, N.Y.

How to remove (chelate) excess iron (rust) from the body

The question is, what can adult males, or females who have not menstruated for years, do to remove the excess iron from their body stores?

Chelation therapy is what is needed, the removal of the excess iron. Alternative medical specialists offer to perform chelation therapy via the intravenous administration of EDTA, a mineral chelator. Intravenous chelation therapy requires many treatments, maybe 30 or 40, and is somewhat costly ($3000-4000).

Conventional medicine also has a mineral-chelating drug, desferrioxamine, but it is sparingly used because of side effects.

Nature's most potent rust remover is phytic acid, commonly found in whole grains, seeds and nuts.

Phytic acid - also called inositol hexaphosphate, or IP6 - is comprised of six phosphorus molecules and one molecule of inositol. IP6 is provided as a food supplement extracted from rice bran (Tsuno Foods & Rice Co., Wakayama, Japan).

Bran cereal has some IP6 in it, but it is already bound to minerals. The IP6 extract imported from Japan is 70 percent unbound, ready to selectively chelate (attach to) minerals as it enters the human circulatory system.28 IP6 doesn't remove minerals from bones or other needed minerals, it just removes the free unbound iron, copper, calcium, and heavy metals such as mercury, lead and cadmium.

IP6 has little or no affinity for sodium, potassium, and magnesium, the important electrolyte minerals required for proper heart rhythm. Taken in between meals with water, IP6 can rid the body of excessive iron and other minerals in a short period of time, 30-90 days.

Once bound to IP6 the excess minerals are excreted via the urinary flow. IP6 rice bran extract is an unheralded but potent anti-aging therapy.

The iron stores in your body will control the severity of disease and longevity. Learning how to control iron is a major, if not the primary, anti-aging factor in living organisms. The pursuit of long life requires the control of iron.

Tannins are potent binders (chelators) of iron.17
http://www.lewrockwell.com/orig/sardi10.html

There are lists on the internet of foods that contain tannins...like blueberries (dark yummy things).

The diagnosis and treatment of acid-base deranged dogs infected with Babesia canis.

Malherbe WD, Immelman A, Haupt WH, Walzl HJ.

A study was made of the acid-base status of Babesia canis infected dogs judged unlikely to recover after specific babesicidal drug therapy despite the use of blood transfusion and other conventional supportive measures.

Such cases were invariabley acidotic and responded well and often dramatically to supportive intravenous sodium bicarbonate administration.

Elevated blood urea nitrogen, also responded gratifyingly to this procedure. The rationale is discussed in some detail.
http://www.sodbrennen-welt.de/science/1976/1976_4617.htm

Re: hemochromotosis

"According to a 1988 issue of Journal of Orthomolecular Medicine, you should not take EXTRA iron if you have an infection. Because bacteria require iron for growth, the body stores iron and does not utilize it when there is an infection."

(Bb does NOT use iron.)

Hemochromatosis
Symptoms
Hemochromatosis can affect the entire system, symptoms can be numerous and similar to diseases better known to physicians such as diabetes, heart failure, arthritis, liver disease, impotence, and depression.

Therefore misdiagnosis is common. Physicians might focus on one particular disease that can occur as a result of not detecting the cause: hemochromatosis.

Not everyone manifests the same same symptoms. Listed below are those most commonly associated with excessive iron build up:

chronic fatigue

arthritic pain in joints (for some the middle two fingers are affected; this is known as iron fist)

loss of libido (sex drive) or impotence

amenorrhea (premature cessation of menstrual cycle)

changes in skin color such as jaundice, bronze or gray-olive colored skin, a tan without being in the sun, redness in the palms of the hands

abdominal pain

weight loss

shortness of breath

chest pain

heart arrhythmia

depression

elevated blood sugar

hypothyroidism

enlargement of spleen

elevated liver enzymes (ALT/AST)

fibromyalgia

irritable bowel syndrome

Hemochromatosis can be detected in several ways:

Genetic Testing
Specific Blood Tests
Iron Panel Tests
Liver Biopsy

Hemochromatosis
Treatment
Currently, therapeutic phlebotomy or blood extraction is the most efficient means of tissue iron reduction. However, preventive measures may be incorported into diet and behavior that can reduce the amount of iron absorbed

Fact Sheet
1. Undetected and untreated excess iron kills after inflicting injury to a variety of body organs.

2. The patient's and physician's concern must be to detect any excess iron instead of establishing
a diagnosis of hemochromatosis.

3. A complete physical must include: Total Iron Binding Capacity (TIBC) and Serum Iron (SI).
Divide the SI by TIBC for percentage of Transferrin Saturation TS. Normal range: 12-45%.

4. If TS is outside normal range, use the same blood to measure Serum Ferritin (SF). Normal range: 5-150. If an individual is outside the normal range on Serum Ferritin, a phlebotomy
program should be started to bring the SF below 10. Ferritin is the closest measure of stored iron.

5. To reduce elevated iron levels, the patient should be given a prescription for weekly or twice weekly bloodlettings at a blood bank to confirm or rule out iron overload. The hematocrit cutoff should be set between 30-35. Anemic patients might benefit from B complex vitamins with folic acid.

6. A liver biopsy is not necessary to confirm diagnosis.

7. If iron tests low, the cause should be found: the bleeding ulcer, cancer, or chronic infection. It is dangerous to medicate with iron without 1. testing iron and 2. knowing the reason for the deficiency.

8. In the matter of DNA testing, we are not recommending this approach. All of the genes that can cause an overload are not yet discovered - about 15% yet outstanding. Jerome Sullivan MD PhD explains that possession of the gene " will confirm but will not exclude the diagnosis. "

9. Diagnosis not followed by vigorous treatment is useless. The patient must be motivated to unload the iron as fast as possible by weekly or twice weekly phlebotomies at the blood bank. Goal: ferritin below 10 or even 0.

10. All blood relatives of the patient must be evaluated and monitored. They should all be checked for iron overload at each and every physical for the rest of their lives.

11. Iron overload cannot be controlled with diet. High iron foods also contain other nutrients needed to repair body damage. We do not recommend a low iron diet. Caution: avoid over-the-counter vitamin C and additives of such. Avoid raw seafood, which kills a number of people every year, mostly those whose excess iron is undetected.

12. Symptoms vary too much to help with diagnosis. Chronic fatigue, arthritis, heart disease, cirrhosis, cancer, diabetes, thyroid disease, impotence, sterility. In other words excess iron is toxic and can injure every part of the body, including the brain. Elevated liver enzymes must not be ignored. Anemia can be a symptom. Some anemias are iron-loading. Hemoglobin level does not indicate iron status.

13. Excess iron lowers the immune system. Many diseases will show a poor outcome unless excess iron is removed: AIDS, cancer, and hepatitis, for example.

14. Iron does cross the blood brain barrier, contrary to an old belief. Excess iron stored in the brain has been found to trigger or exacerbate severity in Alzheimer's, multiple sclerosis, ALS, Parkinson's and other diseases. Psychological problems have even been linked to excess iron.

15. Hereditary hemochromatosis is only one of several iron loading diseases, its double gene frequency is 1 in 200 of the US population and an astonishing 13% have the single gene expression. Those with this single gene expression also can get sick. It is the most common genetic disease, and tragically the most undiagnosed.

16. The goal of medicine is to provide maximum preventative care at the least expense. Patients must be aware of iron overload for their own protection. IOD honors the increasing number of physicians who are updating their information on iron overload.


Posts: 9481 | From Sunshine State | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Mathias:

I have not tested positive. Thoughts?


Dr C in MO treats all his patients for babs...positive test or no....doesn't matter to him. He's finding tons of people who respond to the meds since the babs tests are no more accurate than the Lyme tests. [arrggh!]

Go for it!

------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Lymetoo:
Is there anything on a CBC with differential that would indicate a problem with the iron?



????????????????
My CBC's are usually normal. Would I still need some other test to check for the iron?

------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
riversinger
Frequent Contributor (1K+ posts)
Member # 4851

Icon 1 posted      Profile for riversinger   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Lymetoo:
[b]Is there anything on a CBC with differential that would indicate a problem with the iron?



No, the CBC wil not catch the hemochromatosis. The simplist tests for screening are ferritin and transferrin saturation percentage. If those are both high, then further testing can be done.

You can also test for the gene profile, but there is some controversy about that, due to potential insurance discrimination.

As someone mentioned, a liver biopsy is the gold standard, but it is not always necessary.

The Iron Disorders Institute
American Hemochromatosis Society

Because of the seriousness of untreated hemochromatosis, anyone with suggestive testing should think twice before refusing treatment.

If your doctor is on top of things, they keep a close eye on your response to the blood draws, and can easily stop them if something is going wrong.

[This message has been edited by riversinger (edited 07 July 2004).]


Posts: 2142 | From California | Registered: Nov 2003  |  IP: Logged | Report this post to a Moderator
liz28
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
up
IP: Logged | Report this post to a Moderator
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663

Icon 1 posted      Profile for Linda LD     Send New Private Message       Edit/Delete Post   Reply With Quote 
So what happened?

How do you know that the leaches don't have something nasty to give?

L

Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
bpeck
Frequent Contributor (1K+ posts)
Member # 3235

Icon 1 posted      Profile for bpeck     Send New Private Message       Edit/Delete Post   Reply With Quote 
Since I was active in these prior posts, I'll add that I am still symptom free of both Lyme and Babs symptoms.

But I conceed that it's possible I had uncomplicated Malaria instead of Babesia - I'll have a better idea when the western blot proteins are defined for Malaria (to see if they're cross reactive with babs).

.....I didn't use any leaches - but there are "medicinal leaches" bred that are free of disease - they aren't just any ole leaches from any ole stream.

Barb

--------------------
Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion

Posts: 1882 | From VT | Registered: Oct 2002  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.