New test result,same old story

[notmyself]

hi there,

I receive some new results today..

I check my immuglobines

IgG -11.24 g/L range 5,40-18,20
IgA- 1.72 g/L range 0.63-4.84
IgM -1.38 g/L range 0.22-2.4
IgE- 17.8 ui/ML range lower than 100


Any relevance to this..?..the doctor said that these together with my other blood tests proves that there is no pathogen in my body or any dysfucntion..and that if i have a problem is not from the immune system..is that true?..

 

[eljefe19]

Not necessarily. At OMF they offered me RTX for several elevated autoantibodies. My IG levels were all "normal" and they still believe there is an immune component, otherwise I'm sure they wouldn't be recommending RTX. My NK numbers were both normal as well.

 

[mrquasar]

Not necessarily. At OMF they offered me RTX for several elevated autoantibodies. My IG levels were all "normal" and they still believe there is an immune component, otherwise I'm sure they wouldn't be recommending RTX. My NK numbers were both normal as well.

Which autoantibodies did they test for at OMF? And how much were your visits and tests there? Did you have insurance?

I would love to get these tests done but I don't have insurance so it will be a significant financial hit. Have to decide it's worth it first.

 

[Kati]

hi there,

I receive some new results today..

I check my immuglobines

IgG -11.24 g/L range 5,40-18,20
IgA- 1.72 g/L range 0.63-4.84
IgM -1.38 g/L range 0.22-2.4
IgE- 17.8 ui/ML range lower than 100


Any relevance to this..?..the doctor said that these together with my other blood tests proves that there is no pathogen in my body or any dysfucntion..and that if i have a problem is not from the immune system..is that true?..

Hi @notmyself remember that there are no aproved biomarkers for ME, but the closest of them all would be NK cell function. While some from our patient group have Immune globuline abnormalities, not everybody does.

These test results simply show you do not have these abnormalities, but it is not reflective on whether you are sick or not sick.

I cannot wait on the day when the lab tests will truly show how sick we feel.

Best always, Kati

 

[eljefe19]

For example, my NK cell function test was normal. But my doc says unequivocally I have ME. So, obviously it's not a biomarker. @mrquasar At OMI they send off your blood to a german lab, and they test for a few autoantibodies. I had I believe 4 positives, against Alpha Adrenergic receptors and a couple Muscarinic. Most of my test results were normal, I also have done the Cunningham panel which I know they use. It tests for some more autoantibodies, of which I only had one abnormal result. Basically, if you have any of these autoantibodies, they are going to offer Rituximab. Be prepared the cost is almost 50k a year. It's crazy. I'm happy to answer any other questions too.

 

[notmyself]

Hi @notmyself remember that there are no aproved biomarkers for ME, but the closest of them all would be NK cell function. While some from our patient group have Immune globuline abnormalities, not everybody does.

These test results simply show you do not have these abnormalities, but it is not reflective on whether you are sick or not sick.

I cannot wait on the day when the lab tests will truly show how sick we feel.

Best always, Kati

HI, i wish that aswell,but regardless of that i still need to find an organic issue to take out of my head that anxiety is causing me all this..The NK cell test is pretty expansive ..500 euros is ridicoulous ..i am also almost sure that it will not show low activity ..i feel i am immune to any virus around,in my house everyone was sick with flu except me,,i even drink from the same bottle to see if i get the flu..and i didin t..That can mean my immune system is overactivated ,but in this case why all my immunoglobulins are normal..i just hate medicine

 

[Kati]

HI, i wish that aswell,but regardless of that i still need to find an organic issue to take out of my head that anxiety is causing me all this..The NK cell test is pretty expansive ..500 euros is ridicoulous ..i am also almost sure that it will not show low activity ..i feel i am immune to any virus around,in my house everyone was sick with flu except me,,i even drink from the same bottle to see if i get the flu..and i didin t..That can mean my immune system is overactivated ,but in this case why all my immunoglobulins are normal..i just hate medicine

Hi @notmyself I have normal immunoglobins. i have ME, I have been sick for 8 years and I haven't had a single cold since onset.

i understand your need to find an organic abnormality. I am also impatiently waiting. I keep on hoping for abnormal results because with all of the normal results, my family dr thinks it's all in my head. i get it.

 

[Gingergrrl]

@eljefe it's interesting b/c my NK functioning tests are very low but we are fairly certain now that I do not have ME/CFS vs. autoimmune disease and fighting to get insurance coverage of RTX. I was told low NK functioning can be found in many illnesses, like MCAS and mold exposure, and not unique to any one disease.

It's not an option for me to pay for RTX privately (but my insurance covers all the blood tests and basic stuff). We got insurance to cover my IVIG (my co-pay is expensive but manageable) so am hoping it will be the same for RTX.

I have so many abnormalities on tests that I've lost count. It seems (although I do not know why) that tests are normal in me/cfs and mine are so off that it also must make my docs think it is another issue.

 

[Silence]

My IG are pretty much normal too, but my CD4 is always low... like in the 300s. You could ask for a lymphocyte panel. You could also check you IGG subclasses. I have low IGG subclass 3 deficiency with normal IGG levels- I think its common in this disease. At least that's what I remember my Dr. telling me.

 

[TrixieStix]

For example, my NK cell function test was normal. But my doc says unequivocally I have ME. So, obviously it's not a biomarker. @mrquasar At OMI they send off your blood to a german lab, and they test for a few autoantibodies. I had I believe 4 positives, against Alpha Adrenergic receptors and a couple Muscarinic. Most of my test results were normal, I also have done the Cunningham panel which I know they use. It tests for some more autoantibodies, of which I only had one abnormal result. Basically, if you have any of these autoantibodies, they are going to offer Rituximab. Be prepared the cost is almost 50k a year. It's crazy. I'm happy to answer any other questions too.

I asked my OMI doc about the German testing and was told it might be something we will want to do down the road and that right now it costs $500 but that the price may come down in the future.

 

[TrixieStix]

I actually just an hour ago got back my results from my big initial OMI testing. My doc messaged me in regards to it saying that I have lots of abnormalities and we will go over them during our next phone appt". Hate the waiting.

Going thru the results myself now. One thing that stands out is that my "Complement Component c3" and "Complement Component c4" are both are below normal range with C3 being extremely low. The posts online I am finding say these are findings found in Lupus but my ANA has always been negative. Going to look into this.

NOTE: I am NOT referring to Complement C3a and C4a as those are not the same thing as C3 and C4.

 

[notmyself]

I actually just an hour ago got back my results from my big initial OMI testing. My doc messaged me in regards to it saying that I have lots of abnormalities and we will go over them during our next phone appt". Hate the waiting.

Going thru the results myself now. One thing that stands out is that my "Complement Component c3" and "Complement Component c4" are both are way below normal range. The posts online I am finding say these are findings found in Lupus but my ANA has always been negative. ????

i make those those aswell...
Complement C3 - 0.9 range 0.82-1.85
Complement C4- 0.22 range 0.15-0.54

they are in range ..even tho C3 in kinda closed to low..

 

[TrixieStix]

i make those those aswell...
Complement C3 - 0.9 range 0.82-1.85
Complement C4- 0.22 range 0.15-0.54

they are in range ..even tho C3 in kinda closed to low..

Your supposed to have complement C3 and C4. The are an important part of your immune system. If they are within range then they aren't significant.

 

[valentinelynx]

and fighting to get insurance coverage of RTX

We got insurance to cover my IVIG (my co-pay is expensive but manageable) so am hoping it will be the same for RTX.

Hi @Gingergrrl! Me, too, trying to get insurance approval for RTX. I've got the same antibodies as you, if I recall. However, I lost my insurance coverage for IVIG when I had to change insurance companies in January (BC/BS left Tucson's individual market), so we're fighting for that now, too. Even though my IgG is obviously low. Such an endless tail-chase!

 

[Gingergrrl]

Hi @Gingergrrl! Me, too, trying to get insurance approval for RTX. I've got the same antibodies as you, if I recall. However, I lost my insurance coverage for IVIG when I had to change insurance companies in January (BC/BS left Tucson's individual market), so we're fighting for that now, too. Even though my IgG is obviously low. Such an endless tail-chase!

My insurance situation is complex (won't bore everyone w/the details) but can't see any scenario before May/June that I'd be doing RTX (for a few different reasons).

So BC/BS left the marketplace (ACA) plans in your area and you just got dropped?! Am so sorry to hear this.

 

[Starlight]

Do any of you know what is the name of the German lab. Doing the testing. I am in Europe and would be interested in getting some testing. I imagine OMI would be using a reputable lab and would be glad of any help with this.

 

[Gingergrrl]

Do any of you know what is the name of the German lab. Doing the testing. I am in Europe and would be interested in getting some testing. I imagine OMI would be using a reputable lab and would be glad of any help with this.

Yes it is called "Cell Trend" lab and the head is Dr. Harald Heidecke. I have all of the info that I could give you later if you can't find them (but am not at home right now).

 

[CFS_for_19_years]

Do any of you know what is the name of the German lab. Doing the testing. I am in Europe and would be interested in getting some testing. I imagine OMI would be using a reputable lab and would be glad of any help with this.

Information is here: http://forums.phoenixrising.me/inde...gic-and-muscarinic-receptor-antibodies.46689/