posted
Was informed by a hematologist that I have the Beta Thalassemia
minor/trait gene. He said it's nothing to worry about since I
have one copy of this gene and it should not cause any issues.
However, what I've been reading online about this condition is
that it can cause a mild/moderate form of anemia, the
production of red blood cells is impaired (red blood cells are
small), and more importantly it can make one susceptible to
infections......I think this is something to very concerned about
especially with lyme and co's!
I can't help thinking that perhaps the lab may be mistaking babesia (which I have) for the Thalassemia trait.....do you think it's possible or am I crazy?
Anyone have any experience with Beta Thalassemia Minor? Please send me a pm if you wish.
Thank you all for your help!
Posts: 574 | From New Jersey | Registered: Feb 2004
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posted
good question, are u of Mediterranean descent? many have thalassemia, either alpha or beta, beta is much better to have but can have screwed up looking hematologies that confuse unknowledgeable dr's
Posts: 532 | From Texas | Registered: Oct 2004
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posted
dal123....yes I am Italian so I fit the profile.....according to the hematologist my bloodwork is except normal.....my red blood cell count is a little high and my ferritin level is low normal ........ but everything else is in the normal range.
I want to call Quest labs and discuss this with someone but I'm sure they will say I need to speak with my hematologist.....he has basically dismissed me because he feels from his perspective there is nothing wrong and we have nothing more to discuss.
Anyone else have any experience with this issue? Is it true that it can make you susceptible to infections?
Posts: 574 | From New Jersey | Registered: Feb 2004
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posted
Ok, ferritin level is normal so that is good. This is something many Mediterranean people live with, it won't kill you but does have to be taken into consideration, ie don't give your blood, if u needed a transfusion additional type and cross match is needed,
Quest labs will not be able to discuss the issues. They only run the tests,their pathologist will interpret any abnormal results and have those flagged to follow up with your dr.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
One thing, the oxygen carrying capacity of the RBC's can be affected leading to suspectibility to infections, thallassemia disrupts the hemoglobin molecule, so get oxygen sat measured, blood gases. you could possibly benefit from an oxygen concentrator or small amounts of medical grade oxygen as part of the Lyme treatment.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
Thank you so much dal for your input......you sound very knowledgeable about this subject......probably more than any doctor I have seen about this so far.
What you're saying about the oxygen carrying capacity of the RBC's is very interesting.....this could be the reason I keep relapsing ......and contracting infections like tularemia for which I am currently under treatment.
Is there anything online about the oxygen issue that I can present to my llmd and infectious disease doctor?
What are the specific lab tests called that measure blood gases? Maybe I already had them done and don't know it.
Posts: 574 | From New Jersey | Registered: Feb 2004
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I have often wondered about it being connected to babesia, or another unidentified red-blood cell bug.
The odd thing here is that I had a lifetime full of blood tests that came back normal, and it wasn't until my Lyme hit, with a few years of subclinical symptoms that would come and go, that the Thalassemia showed up.
No one seems to have any idea why that would happen -- why it would show up out of the blue. Including the three hematologists I've been sent to.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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I am not sure what oxygen tests are in use these days. yes, I am a former medical technologist with ten years of experience in hematology oncology.
Posts: 532 | From Texas | Registered: Oct 2004
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Yes i have thal minor too. Found out when i was 16 about ten years ago, been dealing with lyme for two and a half years. My bloodwork always comes back slightly abnormal, low RBC, low ferritin i think. It does cause me some fatigue, irritability and depression but not as much as lyme has. Probably makes sense that i have never been able to fight infections as well either. I guess we just need to take a little extra care to support our body's. I try to eat lots of iron rich foods (black beans, lentils, meat) and i take chlorella which is very iron rich. More oxygen would definately help us, let me know if you find anything that works for you
Posts: 113 | From south dakota | Registered: May 2011
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nomoremuscles, thank you for your response......do you have any other family members with this trait.....I think if other people in your family have it, who don't also have lyme then I would say that it's not connected to lyme or babesia.
I'm going to ask my siblings without lyme to get tested for this to see if they have it.
The possible reason that your doctors did not find thalassemia until now may be that if the bloodwork looks normal most doctors won't bother to dig deeper or think out of the box.
It took two hematologists to figure out that I had this issue.....the first one I went to refused to do any labwork because he did not feel there was anything wrong with my having high serum B12 and folate levels
What subclinical symptoms have you experienced that may be related to thalassemia minor?
Do you take any supplements etc. that help this condition?
Please send me a pm and let me know if you have seen any doctors in the NJ/NY/CT area about this issue.
dal123.....wow you do have experience with this......would a hematologist request the tests you are talking about or do you think a good llmd would be able to order these tests......I'm not sure which way to go with this.....thanks for your help!
Posts: 574 | From New Jersey | Registered: Feb 2004
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posted
tickbiter, thanks for sharing your experience and diet recommendations.......my RBC is usually a little high and my ferritin is low normal right now, but everything else is in the normal range.
It's funny that since last Friday when I found out I had this trait I have been feeling sluggish and fatigued......but I'm on some abx for coinfections so I'm not sure if I'm herxing from them right now.....as if my case wasn't complicated enough, this issue definitely makes things more difficult.
Have you seen any kind of specialist besides a hemotologist regarding this issue? What does your llmd think about how this issue and how it impacts your lyme treatment?
Posts: 574 | From New Jersey | Registered: Feb 2004
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I have this trait too. I first found out that I had beta thalassemia when I was pregnant the first time when my doctor couldn't figure out why my iron levels were decreasing over the first tri-mester.
Honestly, I lived with beta thalassemia just fine all these years - until I got lyme, babesia microti, and hemobartonella. I tired more quickly before getting sick with lyme and co-infections, but it didn't really have an impact on my health. I was healthy with no problems at all pre-lyme days. I even didn't get a common cold or flu when everyone else around me did.
I think there is no connection between infections and thallasemia minor at all. The difference between us and people who don't have it is in the size of the red blood cell and the shape. We have some rod shaped red blood cells mixed in with round ones and they are smaller than the average person's red blood cells. It does make you slightly anemic which contributes to fatique, but you do not need iron. In fact, my hematologist always told me not to take iron because it is easy for someone with thallasemia to get iron overload, since we are not iron deficient.
If you get iron overload - it can lead to other health issues. For example, excess iron in organs such as liver which can cause liver problems.
I do however, think that it's much harder to get rid of red blood cell protozoas like babesia and hemobartonella when you have thallasemia because I am going on treating babesia now for over a year and still have not gotten rid of it. I have never been told this by a doctor - just my own opinion.
Don't worry about thallasemia minor - it is not a big problem. I was told to supplement with folic acid and a good b-complex vitamin for it and it seemed to help me. I would get your blood checked regularly to make sure you do not develop hemochromatosis which is iron overload.
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