Posted 7/9/2017 10:07 AM (GMT 0)
Hey "ImagineThat" Glad your here.
I noticed some other forum members have addressed most of your questions, but no one mentioned number 4 at all so I wanted to address question number 4 in much detail and perhaps pose some questions of my own and hopefully attract more info from others who may be experiencing something similar.
I have been wanting to hear from someone else on the forum who is experiencing Hemochromatosis and Iron overload related issues, and discuss the possible correlation with Lyme, and other tick borne illnesses, as there seems to be very little information about the connection of these two health issues out there on the web. However, I have seen enough people posting on various web forums who seem to be suffering with both conditions to make me believe there is some correlation between the 2, even if anecdotal. I just wish there was more 'official' information and studies supporting this connection. As I find myself saying quite often when it comes to all the symptoms of Lyme and tick coinfections, and their potential connection to other diseases "where theres smoke theres probably a fire" We also have to keep in mind that Lyme can attack nearly every system in the body and tends to affect different bodily systems in different individuals.
I certainly share your frustration with these various 'medical specialists' and as for now it seems some of the only helpful advice we can hope to get is from eachothers experiences on forums like these.
As for myself, I was a previously healthy and very active 32 year old who was lucky enough to never need doctors and had zero health issues before I was bitten by several ticks two years ago, and have since experienced a cascade of continuous health problems.
I pursued Lyme almost immediately because I knew all my health problems started just weeks after the several major tick bites. Although I tested negative with the lab corp eliza test, I sought a Lyme doctor and tested slight positive for Lyme on the Igenex western blot test. I initially did about 3 months of antibiotics and did not improve, slowly getting worse over time.
I am now being bounced around between a primary, a gastro, a nurologist and a Lyme doctor. The only one not dismissing my issues and at least trying to help or figure out all of this being the latter.
As you might imagine, I have had trouble getting conventional docs of any specialty to really consider the idea of any of my problems being related to tick bites. After my primary did initial labs to try to figure out my sudden onset of extreme exhaustion, muscle pain and weakness, shortness of breath, etc., One of the first things we found was slightly elevated liver enzymes.
This prompted a referral to a Gastro. After doing an ultra sound which indicated a fatty liver, and more labs, we found an elevated ferritin level. As you probably know Ferritin alone may or may not be iron overload, as it is not the amount of iron in your blood, but the amount of 'sequestered iron' and can also be a sign of chronic infection and/or inflammation. There is also a high correlation between liver damage and high Ferritin, as damaged liver cells can release ferritin into the bloodstream.
To try to figure this out my gastro did an Iron saturation study. Here were my numbers, and (normal range):
Serum Iron 146 (40-155) Ferritin 789 (24-336) saturation percentage 41% (15-55%) >, TIBC 356 (250-450) Transferrin 239 (200-370)
I also did the hemochromatosis gene test and tested positive for the single(heterozygous) gene mutation C282Y, and was considered "most likely an unaffected carrier." Usually you need both (homozygous) C282Y genes or a combo of C282Y and S65C or H63D to be considered Heriditary Hemochromatosis, (although I have read some people being diagnosed with just one gene.)
So all my numbers together and my gene testing, indicate that I dont have Hereditary Hemochromatosis. However my numbers are somewhat borderline, which could indicate a secondary or acquired Hemochromatosis.
All this time since, over the past two years I have continued to have worsening symptoms, and my liver enzymes and ferritin have continued to increase, but until ferritin reaches 1000, my gastro doc isnt concerned, as docs have these magic numbers in their heads they were taught in medical school, and instead of taking preventative action, they wait and see until you get to that point. My last reading was 850.
So now I am stuck in between assuming an infection such as Lyme or other tick disease(s) may be causing my high numbers by inflammation alone, assuming it is liver damage, or assuming it is actually an Iron disorder, and of course it could be a combination of all 3. A tick infection could possibly trigger Iron imbalances as well as liver damage.
The treatments however, are very different. For Lyme the treatment is antibiotics. For Iron overload the only thing that can bring the numbers down is phlebotomy. Thats right, even in 2017, blood letting is still an accepted and effective medical practice for some diseases. (Maybe those docs back in the 1400's werent so crazy after all!) However if the ferritin numbers are strictly from Lyme or other tick infections simply causing inflammation, phlebotomy can lead to anemia for these patients if they give too much blood. I was considering seeing a hematologist as well to try a phlebotomy or 2 to see if it helps my numbers, as these are the only specialists who can prescribe phlebotomy. Some people have reported great success and reduction of symptoms after just one or two phlebotomies. Alternatively, I could just go give blood, but I hesitate to do so because I dont want to spread any infections that I may have.
As im sure you have heard, Lyme is called the great imitator and can cause many different symptoms that mimick many other diseases. This only adds to the confusion, because many of the known symptoms of Iron overload such as fatigue, muscle and bone pain, heart palpitations and hair loss, are also associated with Lyme and other tick diseases.
As for my Lyme doc, I havent been actively treating due to the high liver numbers, but I am being monitored by her. She says she thinks my ferritin numbers are 'inflammation" and not iron overload. But if this were the case, then my C reactive protein and Sed rate should be elevated, and these numbers are well within the low to normal range for me.
So that is a very technical and very long winded explanation of my Lyme and possible iron imbalances, but I feel the more details the better as someone may come across this later and might be experiencing the exact same things and this is what can make these forums most helpful-Sharing intel. How about your Lyme and Hemochromatosis situation. Did you find out about Lyme or Hemochromatosis first? What do your numbers look like? Genetic Markers? Have you done phlebotomies? Hopefully we can help eachother to sort some of these things out.