Labs finally point in the right direction?

[jtex]

I've been dealing with CFS for 5 years and haven't had any clarity or improvement in the disease. In fact, I keep getting worse and have become unable to work. One of my biggest challenges has been getting doctors to work with me and check for things that aren't common. To work around that, I ordered $1,500 of labs from Walk in Labs (Labcorp).

I got several positive (bad) results back. That's significant because, in EVERY other lab test, examination, or imagery that's been done to me, my results were normal. That would be the time when the Dr. would throw their hands up and say, "You shouldn't be sick. Good luck." This time, I'm seeing problems with my liver, inflammation, possibly EBV, and some other stuff.

The other (active and IgM) EBV antibody results were normal.

The other Lyme antibody results were negative (I'm assuming I don't have Lyme even though I've been bitten by lots of ticks).

Putting my results together, I'm seeing that... I'm sick! Beyond that, I don't know how to make sense of my lab results.

Has anyone ever had similar results, and would you share you experiences?

I'm guessing I'm anemic from being sick and have reactivated EBV based on Montoya's criteria.

 

[jtex]

I also had a lab result that showed plasma iodine in the toxic range, but that's due to reasons covered in this post.

 

[Wishful]

I"You shouldn't be sick. Good luck."

Yah, it doesn't help when according to the common test results, you're among the doctor's healthiest patients.

I don't know enough to even try to interpret those test results. It certainly looks like something is going on. Hopefully it's enough for regular doctors to also admit that something is wrong.

I had a cytokine profile done years ago. It showed half a dozen cytokine that were elevated or mildly elevated. The immunologist said something along the lines of "Something is going on, but it's not a pattern I recognize. Sorry, can't help you." In the years since, I've shown those results to other doctors, but it never made a difference.

It would be nice if a doctor could at least offer some treatments to try based on those abnormalities. Even small improvements can be worthwhile, and there's always the chance that a treatment could make a big difference.

 

[jtex]

I'm finding that, like you said, finding a doctor who does more than exclude me as abnormal is the challenge. I have a lead on one through a friend so fingers crossed he works out. Thanks for the reply!

 

[Galixie]

The only things that stands out to me are your low iron saturation percent and low serum iron. What were your ferritin and TIBC results? If your TIBC was on the low side and your ferritin was normal or high, you might be experiencing a form of anemia caused by inflammation (anemia of chronic disease). I get flare ups of that type of anemia sometimes. The unfortunate thing about anemia of chronic disease is that prevailing view is that the only treatment is to cure the underlying cause. When the underlying cause can't be determined or isn't treatable, the patient is told to learn to live with it. One group of researchers concluded that iron infusions were a valid treatment option, but I have yet to encounter a doctor willing to give it a try.

 

[jtex]

One group of researchers concluded that iron infusions were a valid treatment option, but I have yet to encounter a doctor willing to give it a try.

Wow. You hit the nail on the head with you comment about iron infusions. I just had that conversation with an NP today, and she insisted several times that I'm not anemic because my hemoglobin is normal. Why do most doctors blow off symptoms?? My TIBC was low-normal and ferritin was high-normal. A google search (and Labcorp reference docs) turned up the connection to anemia of chronic disease but, despite being persistent, I couldn't convince the NP I had anemia, and she refused to prescribe iron transfusions. She said, "I'll give you oral iron and it'll take a while for your iron to come up."

Sounds like we've had the same experience.

 

[Galixie]

"I'll give you oral iron and it'll take a while for your iron to come up.

The scary part is that the doctor who told you that is clearly not familiar with anemia of chronic disease because oral iron should never be given as treatment in ACD. It wouldn't work in raising your serum iron levels when taken orally because your immune system is erroneously shunting iron away from red blood cell production through keeping the TIBC level low. Injections or infusions are the only way to circumvent that mechanism.

I wish I remembered where to find a link to that excellent paper. I would share it so you could pass it along to your doctor.

 

[jtex]

The scary part is that the doctor who told you that is clearly not familiar with anemia of chronic disease because oral iron should never be given as treatment in ACD. It wouldn't work in raising your serum iron levels when taken orally because your immune system is erroneously shunting iron away from red blood cell production through keeping the TIBC level low. Injections or infusions are the only way to circumvent that mechanism.

I need to find that paper. I was about to take an iron pill lol.

 

[Galixie]

https://scholar.google.com/scholar?q=iron and the anaemia of chronic disease a review and strategic recommendations&hl=en&as_sdt=0&as_vis=1&oi=scholart#d=gs_qabs&p=&u=#p=enwVTx5h36UJ

Hopefully this link works. It should take you to the abstract for the article. I don't know if you can get the full version from there.

 

[jtex]

That's what I needed. I'll print it out and take it to my GP and see what he says. Also printing LabCorp''s criteria for ACD. Thanks!

 

[valentinelynx]

From what you posted, all I can say is that you definitely have inflammation (CRP) but not hugely so. The low iron and TIBC could be ACD, sure. The elevated LFTs (AST ALT) are very slightly elevated. Could be medication related: are you taking acetaminophen?

The Lyme IgM is suspicious for Lyme, even though it's only one antibody: IgM should never be positive! The tests for Lyme are very poor, in part because Lyme damages the immune system, but also because there are many strains of borellia that cause disease, and only one is even slightly properly tested for by the Western blot.

 

[jtex]

The elevated LFTs (AST ALT) are very slightly elevated. Could be medication related: are you taking acetaminophen?

I haven't taken any acetaminophen or other liver-unfriendly drugs in months. I did recently switch to talking high doses of B vitamins. Maybe that's the cause but I don't know. I've started with some liver supersu supplements, and cut back doses of some of the B vitamins. I don't have any idea of any B vitamins cause liver problems but I taking big doses.

One group of researchers concluded that iron infusions were a valid treatment option, but I have yet to encounter a doctor willing to give it a try.

@Galixie thank you for bringing ACD to my attention. I did get my (better, not the NP) doctor to prescribe iron infusions today. About noon today, i began feeling detached from reality, very week, and dizzy. I thought maybe I was crazy but I didn't feel safe walking so I crawled to bed. My wife said I was experiencing anemia. We went to the hospital and my wife implored the Dr. to use a infusion based on the link you shared and the LabCorp ACD definition. I got the treatment and it took away about 75% of the anemic feeling.

I received 200mg of iron. Took about 2 hours for the treatment. I was dizzy and exhausted by the time we got to the hospital so I fell asleep after the treatment began. I woke up 30 minutes later and felt more relaxed than I had in, I don't know, many months. I used the time to day dream about healthy stuff like learning welding. Lol

I'm still feeling tired and a little weak now but I do credit the infusion for turning around a scary episode of anemia. I get another infusion in 2 weeks. I told my wife I wish I could be on an iron infusion 24/7!

 

[iwillwin1day]

The scary part is that the doctor who told you that is clearly not familiar with anemia of chronic disease because oral iron should never be given as treatment in ACD. It wouldn't work in raising your serum iron levels when taken orally because your immune system is erroneously shunting iron away from red blood cell production through keeping the TIBC level low. Injections or infusions are the only way to circumvent that mechanism.

I wish I remembered where to find a link to that excellent paper. I would share it so you could pass it along to your doctor.

How IV iron is safe in anemia of chronic disease? Why oral iron tablet is toxic and IV iron not? Any studies you have to support this ? Isn't it IV iron go to blood directly and immune system again store iron from blood in ferritin and not transferrin? Thanks

 

[jtex]

I'm assuming Galixie will answer your question but I have a couple thoughts about it. There's nothing dangerous about oral iron AFAIK. It is inconvenient, however, to take much. I don't think I could've gotten an adequate amount of iron orally. In fact, I was taking oral iron bit the anemia got worse. I'm still taking oral iron in the hoped it will sustain my iron levels between infusions.

By the way, I feel a noticeable benefit since I got an infusion. Much of my anxiety has either gone away or is easier to ignore and I've been able to relax for the first time in a year or so. Of course, 75% of my anemic feelings went away.

My very limited experience confirms for me that IV infusions are effective for managing the symptoms of ACD. Need to get the underlying disease addressed though.

 

[iwillwin1day]

I'm assuming Galixie will answer your question but I have a couple thoughts about it. There's nothing dangerous about oral iron AFAIK. It is inconvenient, however, to take much. I don't think I could've gotten an adequate amount of iron orally. In fact, I was taking oral iron bit the anemia got worse. I'm still taking oral iron in the hoped it will sustain my iron levels between infusions.

By the way, I feel a noticeable benefit since I got an infusion. Much of my anxiety has either gone away or is easier to ignore and I've been able to relax for the first time in a year or so. Of course, 75% of my anemic feelings went away.

My very limited experience confirms for me that IV infusions are effective for managing the symptoms of ACD. Need to get the underlying disease addressed though.

Wow. Nice to hear iron IV helped you. Do you know your ferritin level? Thanks

 

[jtex]

Wow. Nice to hear iron IV helped you. Do you know your ferritin level? Thanks

My ferritin level was 339 thr week before the infusion.

 

[iwillwin1day]

My ferritin level was 339 thr week before the infusion.

Mine is at 500. My doctor is not ready to give iron IV with such high ferritin. Now I will have to find new one. And many thanks for sharing your experience.

 

[jtex]

Good luck!

 

[Galixie]

@iwillwin1day
It's not so much that oral iron is toxic. It's that it is simply not effective.

"Oral iron supplements are often poorly tolerated, and patients frequently exhibit poor compliance: in addition, patients with ACD will usually have raised hepcidin levels, which would be expected to inhibit intestinal iron absorption. However, oral iron is cheap, widely available, and easy to administer, and given the difficulties in ruling out concomitant IDA in many patients with ACD, a therapeutic trial of oral iron will be undertaken by many clinicians treating ACD. It must however be recognized that failure to respond to oral iron rules out neither true, nor functional iron deficiency."
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2141.2011.08741.x

I didn't fully read this article but it did seem to hit all the important points about how the functional iron deficiency of ACD occurs:
https://www.the-rheumatologist.org/...tion-patients-rheumatic-disease/?singlepage=1

 

[jtex]

I had neurosurgery to address my real issue, which wasn't ME/CFS. My iron still seems low unless I take supplements daily.