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Can a hematologist help?

Tella

Senior Member
Messages
397
Hi, I’m seeing a hematologist in a few weeks’ time. I’ve asked to be referred to one as I’ve seen all the other specialists (when I was still figuring out what I had) already. Now that I know I have ME, I wonder if it will be a waste of time? I wanted to see one especially as at first I thought I may have some issue with my blood as I was having unexplained bruises all the time. They’re still there but not so often.
So is there any test I can ask them to perform that might aid my treatment? Or perhaps find any other underlying conditions, like EDS or smth? But seeing there aren’t any treatment for EDS or other conditions associated with ME, is there even any point doing another blood test?

So far, I’ve been checked for a few viruses, nutritional deficiencies, blood clotting issues, other autoimmune blood tests (that aren’t reliable anyway).

Is there any genetic or other test they may do that might help my kids in the future in case they end up having similar conditions to me? (But if they aren’t curable then do we really need to know which genes are whacky or which aren’t?). If yes, then it may be worth attending the apt.

If I can’t think of much value that can come out of this and don’t think it’s worth doing the trip I won’t go as it will take everything out of me just to attend the appointment so it better be worth it. Have u been to one? Please could u help me decide...many thanks

P.S I won’t discuss my ME diagnosis with them, as I don’t want to, nor there’s any point in it.
 

kangaSue

Senior Member
Messages
1,851
Location
Brisbane, Australia
Are you getting your RDI for vitamin C? You can have easy bruising if this is a bit lacking.
There is some research to suggest that a number of different chronic conditions (including ME/CFS) feature a lack of red blood cell deformability as part of the pathology so it might be of interest to have that aspect checked out.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
Hi, I’m seeing a hematologist in a few weeks’ time. I’ve asked to be referred to one as I’ve seen all the other specialists (when I was still figuring out what I had) already. Now that I know I have ME, I wonder if it will be a waste of time? I wanted to see
Mine wasn't waste of time - I had to have an emergency infusion of iron about 9 years ago. Now I see a Hematologist/Oncologist regularly - my Hematocrit, Hemoglobin, Iron, and Ferritin were so very low. I can't make red blood cells - so I got Infusion of Infed this year.
He made me go to his genetecist also - found out I have colon cancer chromosome, due to my ethnic background. But with CFS/ME - I think it is not hard to get anemic. With Gastroparesis I can't eat the foods that have lots of Iron in them BTW, Hematologists are very bright drs.......
 

Carl

Senior Member
Messages
362
Location
United Kingdom
Didn't help me at all. They told me that I had a low white cell count and left it at that. Other more indicative tests, IgE antibodies to every food that I eat, were ignored by my crap doctor. Absolutely no follow up or further investigation despite how severely it influences my eating.

Another cause of bruising that I have seen mentioned is Lyme disease. I do tend to bruise quite a lot myself and I do supplement with Vit C.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
Hi, I’m seeing a hematologist in a few weeks’ time.
How did this go for you? I’m on my second hematologist. The first one did a bone marrow biopsy but couldn’t tell me much. My current one is more persistent in trying to help. He is considering having me do a second biopsy to look for viruses. I also have a low white cell count.
 

Tella

Senior Member
Messages
397
How did this go for you? I’m on my second hematologist. The first one did a bone marrow biopsy but couldn’t tell me much. My current one is more persistent in trying to help. He is considering having me do a second biopsy to look for viruses. I also have a low white cell count.
I ended up moving the apt to a later date as been feeling worse lately. Why did they do a biopsy? Cos of the wbc? Do they know u have ME? Can’t see them helping me much apart from doing a panel to check for aaaaall the different infections which ofc nobody will do!
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
They did the biopsy because of the low white cell count. They don’t seem to know why it’s low, but apparently ruled out anything serious.

I just saw him again today for a follow up. At my last visit my iron was low, and he had me supplement for a month then retested. I couldn’t tolerate the oral iron, so I did patches. Iron did come up, so I guess it’s working.
Unfortunately, I don’t feel any better.

He is aware of my ME/CFS diagnosis. What he did offer me, was to do another bone marrow biopsy and look specific for viruses/infection. I’m waiting for results from Cambridge and ARUB testing (different doctor), so if those come back negative, I might take up his offer.

In your case, think a lot would depend on the person you see. The first one I saw was like, “did my thing/not my problem”. But this guy is really trying to help. I wish the first guy had been a little more thorough, then I wouldn’t have to do over.

I put off the appointment for a year, just like you said, I figured it would be a waste of time. Would insurance cover it? If it won’t cost you a fortune, I’d say give it a try, information is always helpful.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
Another suggestion...
See if you can do a full iron panel ahead of time. Otherwise you’ll just have to turn around and go back.
A full panel should include serum, ferritin, total binding capacity, and transferrin % saturation.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
They did the biopsy because of the low white cell count. They don’t seem to know why it’s low, but apparently ruled out anything serious.
I am so very sorry you are going through all this. I had a bone marrow biopsy one time - put into "quarantine" or hospital room with separate air controls (forgot the name of this huge hospital room).
The Oncologist called the CDC and reported what meds I was on, since my white count was very low.

I called my cousin (pathologist) at Columbia - he told me right away why I had such a low white count.
For me - I was on drug that was only supposed to take for 7 days, yet my Internist kept me on it for 1 1/2 years.
Obviously none of your meds made your WBC low - so that's good, because my treatment was horrid.

With Iron, it is so much easier in 2020 to do Iron Infusion, anyway for me it is, since taking iron is so hard.
Good luck, keep us appraised
 

Tella

Senior Member
Messages
397
They did the biopsy because of the low white cell count. They don’t seem to know why it’s low, but apparently ruled out anything serious.

I just saw him again today for a follow up. At my last visit my iron was low, and he had me supplement for a month then retested. I couldn’t tolerate the oral iron, so I did patches. Iron did come up, so I guess it’s working.
Unfortunately, I don’t feel any better.

He is aware of my ME/CFS diagnosis. What he did offer me, was to do another bone marrow biopsy and look specific for viruses/infection. I’m waiting for results from Cambridge and ARUB testing (different doctor), so if those come back negative, I might take up his offer.

In your case, think a lot would depend on the person you see. The first one I saw was like, “did my thing/not my problem”. But this guy is really trying to help. I wish the first guy had been a little more thorough, then I wouldn’t have to do over.

I put off the appointment for a year, just like you said, I figured it would be a waste of time. Would insurance cover it? If it won’t cost you a fortune, I’d say give it a try, information is always helpful.
Sorry about that. Was it painful to do the biopsy? Were u under anesthetic? Have u tested your blood for viruses? As that may be easier than doing another biopsy...I’ve found some viruses with a blood test and currently treating them. Have u tried any other treatments?
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
The biopsy wasn’t too bad. The person that did it was very kind, big plus. Was a little sore days later, but compared to some of the things I’ve been thru, overall went okay. I’m not in any hurry to do another one, but will consider it if nothing else turns up.

My symptoms are pretty consistent with chronic enterovirus. I did the standard labs for Coxsackievirus that came back negative, which I understand is common. I just did testing through ARUB and Cambridge; waiting for results.

I haven’t tried seriously treating for viruses yet, other than things like querciten, lysine. Did vit C iv’s for a while, didn’t do anything. Waiting to see what these tests show.

What tests did you do for viruses? What did they find?
 

Tella

Senior Member
Messages
397
The biopsy wasn’t too bad. The person that did it was very kind, big plus. Was a little sore days later, but compared to some of the things I’ve been thru, overall went okay. I’m not in any hurry to do another one, but will consider it if nothing else turns up.

My symptoms are pretty consistent with chronic enterovirus. I did the standard labs for Coxsackievirus that came back negative, which I understand is common. I just did testing through ARUB and Cambridge; waiting for results.

I haven’t tried seriously treating for viruses yet, other than things like querciten, lysine. Did vit C iv’s for a while, didn’t do anything. Waiting to see what these tests show.

What tests did you do for viruses? What did they find?
They just run a standard antibody test for ebv n cmv when I first got ill. Cmv not active. Ebv active. Wish it didn’t take me this long to find a doc to prescribe antivirals. I’ve been on them for a month now. Ebv in my opinion should be tested in all cfs patients! How long have u been sick for n how severe are u?
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
I have high numbers(antibodies?) for EBV, none for CMV or HH6. No active EBV.

If the enterovirus testing comes up negative, I may try Valacyclovir or something like it. But I don’t know if it would do any good since the EBV virus isn’t active. Lots of controversy about that, but it apparently does help some people.

I’ve been housebound since last Oct. I’ve had symptoms for over 30 years, mainly gastrointestinal, with CFS. When the fatigue lifts, the gastro problems go away too. They have to somehow be tied together.

Which antivirals have you tried, and do they help?
 
Last edited:

Tella

Senior Member
Messages
397
I have high numbers(antibodies?) for EBV, none for CMV or HH6. No active EBV.

If the enterovirus testing comes up negative, I may try Valacyclovir or something like it. But I don’t know if it would do any good since the EBV virus isn’t active. Lots of controversy about that, but it apparently does help some people.

I’ve been housebound since last Oct. I’ve had symptoms for over 30 years, mainly gastrointestinal, with CFS. When the fatigue lifts, the gastro problems go away too. They have to somehow be tied together.

Which antivirals have you tried, and do they help?
Maybe try testing for ebv again in some time. Also there’s a roadmap somewhere on this website that lists all viruses it’s good to test for there are different treatment options. I’m on Valacyclovir. No difference yet but it’s too early to tell
 
Messages
52
Some people with ME/CFS reported high erythrocyte counts. I had normal counts over a decade ago, then in the following years, they were consistently above the normal range.

There's a lot of dogma in certain fields. There are recognized causes of high erythrocyte counts and I get the impression that most hematologists would suspect some unlikely but recognized possibility, and shrug their shoulders and say it's harmless or something of that nature if nothing fits.

I was told that I should go to an academic hospital. But I've heard here that "the doctors are not the same people who write the papers". One knowledgeable doctor can be enough. But it's hard to tell who it is since doctors with good ratings didn't necessarily get them from figuring out unknown cases.