Blood Work is Normal???

[TrixieStix]

@Jessie 107 S A M E. I know EXACTLY how you feel, as that's how it is with me! Only I'm so damn tired it feels good to rest, which is good for me that I don't hate resting.

I'll be seeing a PM&R (Physical medicine and rehabilitation) specialist soon as well as a Rheumatologist, and right now my biggest ally is my Infectious Disease specialist.

Good luck to you!

the most important thing is to not exceed your "energy threshold" and to use "pacing". If you do something and you get a worsening of your symptoms immediately afterward or in the days following you did too much. So make sure anything you do, even physical therapy does not push your body beyond it's energy threshold. It will hurt you not help you!! Please make sure your physical therapist is aware of how "post exertional malaise" works and how it is harmful to those with ME/CFS.


Before I figured out that I had ME/CFS me and my doctors had the usual mindset that I should "push myself" even when I was feeling awful. That I should be exercising, etc. Unfortunately this was the exact opposite of what I should have been doing. Rather I should have been resting resting resting! Because of this I am now much much worse than I previously was and can barely tolerate any exertion at all

anym
ore, and have a much worse quality of life now compared to what it was when I first began having symptoms. Advocate for yourself and know that often with this disease the patient knows more than the doctors they see.

 

[TrixieStix]

Every rheumatologist and neurologist I have seen (at large city "top notch" university hospitals) has known nothing at all about ME/CFS and gave me awful advice. Advice that would actually cause me more harm and further disability if I had listened to them.

 

[lgibson2017]

@TrixieStix I absolutely agree, and had similar experiences with the "push through" mindset and had to learn to pace myself. The problem, however, is that it's come to the point where everything almost is beyond my energy threshold....my energy threshold has gotten so low that if I'm not on stimulant medications just sitting up is too much.

At times it feels like I don't have a threshold at all anymore, but I don't have the support to pace much. The stimulant medications, though probably harmful, are the only way that I can get up, go to school, eat, etc. I genuinely believe that without them I'd be dead.

I'd like to talk to one of the severe cases, the people who are completely or almost completely bedbound...how do you...just how???? How do you get food? How do you go to the bathroom? If I have nobody to care for me, what do I do???? Vyvanse is what I use because I don't have a caretaker, but even with that I push beyond my energy threshold every day and I don't know what to do

 

[Dechi]

@lgibson2017 Is there any way you could make some kind of arrangement with your school, in the same way anyone with a severe illness might ? If you could be excused from class when you can't go, and have someone bring you homework, or even have the classes filmed for you, that would make it so much easier !

I figure if you got a letter from a doctor supporting the fact that you need to stay home and rest, they couldn't say no. If you were my child, I would get that letter from a doctor, and maybe even get a good lawyer with ME experience (yes, there are some because we need help to fight insurance companies), and ask for the school to meet with us. It seems people around you are not taking your illness seriously, so you need to be backed by professionnals who know what they are doing. You could also see a neuropsychologist, these professionnals can evaluate your cognitive dysfunctions. He or she could also write a letter in your favor. Find one with ME experience also. Ask for referrals in your area on Phoenix Rising and facebook ME/CFS support groups.

This is like a mini insurance battle process that needs to be done to keep your health from deteriorating...

 

[lgibson2017]

Yeah, the school is actually more supportive than my parents! The school is willing to do whatever will help, but my parents are applying the brakes. Soon I'll be out, though, and able to take care of myself properly.

HOWEVER...NEWS!!!!!! I DON'T KNOW IF IT'S GOOD OR BAD BUT IT'S NEWS AND I'M NOT CRAZY!!!!! So my illness, we believe, came from a parvovirus infection. They tested my parvovirus titer and it was 7 times HIGHER than the standard value. Well that was in October....they tested it again last week, and it's even HIGHER! 7.5 TIMES OUT OF THE NORMAL RANGE. I hate to be excited about it but I'm just so happy something showed up and I'm not crazy

 

[Dechi]

@lgibson2017 Parvovirus infections are definitely a well known cause of ME !

You need to work on your parents...

 

[Valentijn]

Yeah, the school is actually more supportive than my parents! The school is willing to do whatever will help, but my parents are applying the brakes. Soon I'll be out, though, and able to take care of myself properly.

Get a heart rate monitor if you can - even NICE recommends using them for ME patients. Then you (and your parents) can see how much even minimal exertion is effecting you. A lot of people find the little gadgets to be more persuasive than our own accounts of what we can and can't do

 

[lgibson2017]

I think my parents are almost beyond help...they haven't even read anything about ME despite me asking them to and don't plan to. It's been 2 years and they still don't fully understand what ME even is...I just convinced my mother to read something if I print it out and give it to her and she said she'll read until she "gets bored" and then she'll stop....I've tried explaining that this feels like they don't really care about me or my health but no luck

 

[Valentijn]

I've tried explaining that this feels like they don't really care about me or my health but no luck

Crappy situation. But you'll be able to reciprocate some day when they're elderly and depending on you instead

 

[Kati]

We have hope on the horizon - several good biomedical research groups around the world are working on finding out just what is going on in our bodies, including genetic, immunological and metabolomic studies.

Some are suggesting that there might be a breakthrough quite soon which would enable a biomedical diagnostic test to be developed. When that day comes, we will be able to show our doctors that we really are physically ill.

Until then, unfortunately for most of us, nothing shows up on our blood tests, but it's still important to have these routine tests to check for other things that might be causing some of our symptoms.

The thing some doctors don't seem to be able to accept is that not every illness has a biomedical proof, and that lack of evidence of physical illness does not logically prove a lack of physical illness. It is the evidence that is absent, not the illness.

Best wishes, and keep getting plenty of rest.

Well said @trishrhymes. It is so frustrating when the numbers from the blood work does not reflect on how horrible we feel. Recently a doctor who saw me a total of 20 minutes gave me a 'clean bill of health' based on a few tests which included a CT of the head (no stroke), HIV, Hep B and C and normal kidney and liver function. Imagine that. I spend 23 hours a day horizontal. They have no clue.

I have pretty much had it with these kinds of doctors. i can't wait to the day I can return to them and tell them 'I told you I was sick'. That day is coming.

 

[TrixieStix]

@TrixieStix
I'd like to talk to one of the severe cases, the people who are completely or almost completely bedbound...how do you...just how???? How do you get food? How do you go to the bathroom? If I have nobody to care for me, what do I do???? Vyvanse is what I use because I don't have a caretaker, but even with that I push beyond my energy threshold every day and I don't know what to do

I myself am almost totally housebound and bed/chair bound now (since almost 1 year ago). The amount of time I can sit upright is very limited. When I'm not in bed I'm in my recliner chair. I do leave the house to go to doctor appts, and to the grocery store (use electric carts) once a week. As for socializing before thanksgiving I could tolerate going to a friend's house for dinner very near to my home and while at their house lay down when I need to and limit it to 2 hours, but even that has become too hard. I am definitely "severe" and trying to keep myself from becoming totally bed-bound by making sure I do not exceed my threshold. Over thanksgiving socializing with family and friends proved to be way too much and got even worse. I don't think I have much room left to "get worse" before I become totally housebound/bedbound.

 

[TrixieStix]

I think my parents are almost beyond help...they haven't even read anything about ME despite me asking them to and don't plan to. It's been 2 years and they still don't fully understand what ME even is...I just convinced my mother to read something if I print it out and give it to her and she said she'll read until she "gets bored" and then she'll stop....I've tried explaining that this feels like they don't really care about me or my health but no luck

perhaps you could get them to watch a documentary about ME?. There is a good one that came out in 2015 called "Forgotten Plague" and it is available on Itunes to rent or buy. It even aired on PBS. I have suggested to my own family and friends that they watch it.

http://www.forgottenplague.com/

 

[Cohen2]

Well depends of the tests you run, Cytokine profile, lymphosite soubset, NK cell number and function, viral titters to the known viruses to reactivate in CFS.... They will show abnormal in most.

What my doctor explained to me is most tests are run as a ration. so for example if you devide a/b = c ; 10 /20 =0.5 vs 1/2=0.5 where a and b being out of range and low. So when I did all tests not in ration we started to find the issues.

also, check t3,t4 (as instead of tsh) and B12 and D levels (d125) ......

What is known to show up in lymphocyte subset? I'm seeing an infectious disease Dr next week

 

[Seven7]

What is known to show up in lymphocyte subset? I'm seeing an infectious disease Dr next week

The immune system of Cfs plp are underactovated or overactive or unregulated. Most I have seen are different from mine. I struggle w low T cells, high B cells, low NKs.... you will have your own abnormalies.
Even if they don't find anything specific you can show there are issues.

 

[lgibson2017]

Well, infectious disease didn't say anything about the parvovirus titer other than that the change is "clinically insignificant." I'm going to my GP today to get a referral to PM&R. He did say, however, that 95% of people with ME make a full recovery in a few years...for some reason i just don't believe that...

Yesterday was a bad day. So bad, in fact, that I had to go up to a conference room at school and sleep through lunch because I couldn't make it down to the cafeteria. So, seeing as I gave up food because I couldn't walk, I think it's definitely time for some mobility help. My dad is willing to buy me a power chair if PM&R won't prescribe one, but my mother...well, she thinks I have conversion disorder or that I'm just plain making it up for attention, so that should be fun.

Right now we're trying to figure out whether or not I'm going to be able to make it in college. I have about 4-6 hours per day that I can do things before my stimulant meds wear off...so either I can go to class or I can have a job, but not both. However, if I go to college, I also need a job to support myself, which I probably would not be able to handle. Basically, I can do school or a job, but not both. Oh, and staying at home means staying with an abusive mother...But what kind of career can I have post-college anyway? I wanted to be a vet, but will I be able to if I even make it through vet school?

This is...this is just a clusterf**k really. (am I allowed to curse on here?) I feel like all of my plans for my life are just shattered

 

[Valentijn]

He did say, however, that 95% of people with ME make a full recovery in a few years...for some reason i just don't believe that...

Yes, that's a lie. For adults, only about 5% have a sustained remission. Numbers are a lot better for children and teens, but 95% is gross exaggeration.

...But what kind of career can I have post-college anyway? I wanted to be a vet, but will I be able to if I even make it through vet school?

You could focus on biology and research, instead of medical/veterinary practice. You can still make a difference, but with a lot less physical effort.

(am I allowed to curse on here?)

Fuck yeah

 

[JaimeS]

What is known to show up in lymphocyte subset? I'm seeing an infectious disease Dr next week

Try to get NK cell function rather than number of NK cells. Some patients seem to have normal numbers but low function.

 

[Cohen2]

Try to get NK cell function rather than number of NK cells. Some patients seem to have normal numbers but low function.

Thanks Jamie. Have you seen an infectious disease Dr? if so did you get much out of it?

 

[JaimeS]

@Cohen2 -- I've never had NK cell function done, but I know that Klimas has found that the function is low, rather than necessarily the number of cells present. I believe others have found this as well, but who escapes me.

I saw an immunologist for my day-to-day care, rather than an infectious disease specialist. He was kind and helpful, as well as bright enough to get the gist as well as anyone does when looking at patients.

 

[Cohen2]

@Cohen2 -- I've never had NK cell function done, but I know that Klimas has found that the function is low, rather than necessarily the number of cells present. I believe others have found this as well, but who escapes me.

I saw an immunologist for my day-to-day care, rather than an infectious disease specialist. He was kind and helpful, as well as bright enough to get the gist as well as anyone does when looking at patients.

Yeah I've heard about nk function being lowered. In my case I may have low T or B cells because my lymphocyte count is quite low.

Re the immunologist, that's good to hear. I'm hoping the infectious disease Dr will take seriously my recurrent and persistent infections