I am booked in to see Prof. de Meirleir in January

SOC

Senior Member
Messages
7,849
Likes
16,349
IIRC, Dr Rey does a follow-up PCR test when there is a high Parvo B-19 IgG to determine whether the high titre is due to high leftover antibodies from a previous infection (no biggie) or an chronic infection (biggie). Might be worth asking for if KDM doesn't do it automatically.

I had a chronic Parvo B-19 infection detected by PCR. I had an IgG of 6.82 [>0.9 neg, 0.9-1.1 equivocal], so your viral titre is much higher than mine. That doesn't necessarily mean that you have a chronic infection, of course, but does make it seem more likely.

Equilibrant knocked the socks off my relatively mild Parvo B-19 infection within 3 months. I only had to take 1 pill, although the standard dose is 6 pills. It did a number on the Coxsackie virus, too. :D
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
IIRC, Dr Rey does a follow-up PCR test when there is a high Parvo B-19 IgG to determine whether the high titre is due to high leftover antibodies from a previous infection (no biggie) or an chronic infection (biggie). Might be worth asking for if KDM doesn't do it automatically.

I had a chronic Parvo B-19 infection detected by PCR. I had an IgG of 6.82 [>0.9 neg, 0.9-1.1 equivocal], so your viral titre is much higher than mine. That doesn't necessarily mean that you have a chronic infection, of course, but does make it seem more likely.

Equilibrant knocked the socks off my relatively mild Parvo B-19 infection within 3 months. I only had to take 1 pill, although the standard dose is 6 pills. It did a number on the Coxsackie virus, too. :D
thats encouraging. I dont mind having something so long as i can kill it. :ninja:
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
Parvovirus B19 IgM neg
Parvovirus B19 IgG pos 24.3 [1.1> pos]
So, I tried to find out some more information about my Parvo B19 result. Is my IgG result high? The tentative answer, I think, is yes - which suggests perhaps it could be a chronic infection even though I dont have IgM antibodies for a recent infection.

I found this study where 65% of 500 women (quick read suggests they were not immunocompromised) were positive for B19 IgG, with a mean S/CO of 5.07.
Most of the results that I have seen, even in one or two ME/CFS patients, were under 10, so my result may be of some signficance perhaps.
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
IIRC, Dr Rey does a follow-up PCR test when there is a high Parvo B-19 IgG to determine whether the high titre is due to high leftover antibodies from a previous infection (no biggie) or an chronic infection (biggie). Might be worth asking for if KDM doesn't do it automatically.

I had a chronic Parvo B-19 infection detected by PCR. I had an IgG of 6.82 [>0.9 neg, 0.9-1.1 equivocal], so your viral titre is much higher than mine. That doesn't necessarily mean that you have a chronic infection, of course, but does make it seem more likely.

Equilibrant knocked the socks off my relatively mild Parvo B-19 infection within 3 months. I only had to take 1 pill, although the standard dose is 6 pills. It did a number on the Coxsackie virus, too. :D
Yeah I expect KDM will do me a PCR now, but if not I will request it, unless he plans to just go ahead and treat anyway. What alternative is there to Equilibrant, and if there isnt a good alternative, where and how could i get it? Do you have to be a patient of Dr Chai's?
 

SOC

Senior Member
Messages
7,849
Likes
16,349
Yeah I expect KDM will do me a PCR now, but if not I will request it, unless he plans to just go ahead and treat anyway. What alternative is there to Equilibrant, and if there isnt a good alternative, where and how could i get it? Do you have to be a patient of Dr Chai's?
I think the alternative is gamma globulin, which can have some major side effects. We tried Equilibrant first and for me, it worked. Definitely worth a try.

Here's where you can buy it. No need to be a patient of Dr Chia. As I understand it, this company is run by his son. http://equilibranthealth.com/
 

Daffodil

Senior Member
Messages
5,373
Likes
5,416
a couple of hours after i drank the fructose, i started having a lot of digestive issues....i guess this means i am intolerant? maybe this explains why i hated fruit my entire life and my mother had to force me to eat it. i always felt a little sick after, especially with apples.

how do they treat this? no fruit???
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
a couple of hours after i drank the fructose, i started having a lot of digestive issues....i guess this means i am intolerant? maybe this explains why i hated fruit my entire life and my mother had to force me to eat it. i always felt a little sick after, especially with apples.

how do they treat this? no fruit???
I think so yeah, diet to avoid it. Some fruits are higher in it that others. I don't know what else its in.

I think the alternative is gamma globulin, which can have some major side effects. We tried Equilibrant first and for me, it worked. Definitely worth a try.

Here's where you can buy it. No need to be a patient of Dr Chia. As I understand it, this company is run by his son. http://equilibranthealth.com/
Thanks SOC, ill see what de meirleir says first but nice to know there is this option. It has E102 / yellow #5 in which may be an issue, it makes me go psycho. Haven't had it since I was a kid. Probably only a very small amount in the tablets though, so maybe ok.
 

globalpilot

Senior Member
Messages
626
Likes
263
Location
Ontario
Your ferritin is extremely high. My reading in the past found average was around 90 for women. Have you looked into hemachromotosis ?



Got my first few results back from one of the two belgian labs. These tests were a lot cheaper than I antisipated - just under €90. Ranges in square brackets. Red results are out of range. Orange close to range limits. Comments and discussion welcome!

bezinking (Erythrocyte sedimentation rate - I think) 4 [0-15]
hemoglobin 14.8 [13.5-17.5]
hematocrit 43 [40-52]
RBC:
MCV 92 [82-98]
MCH 31 [27-34]
MCHC 34 [32-36]
WBC 5700 [4000-10000]
Formule (not sure what this is):
Lymphocytes 36% [20-45]
Segments 56% [4-70]
Eosinophils 4% [0-4]
Monocytes 7% [0-14]
Basocytes 0% [0-2]
Trombocyten (Platelets) 368 [150-425]
Activated Partial Thromboplastin Time 31 [24-34]

Other immune:
C-reactive protein (CRP) 1 [0-10]
RA (Latex) <10 [0-14]
ANF (Antinuclear factor) 40 [0-40]

Biochem tests:
Urinezuur (Uric Acid) 7.1 [2.2-7.4]
Total eiwit (Total Protein) 74 [60-80]
Eiwit elektroforese (Protein electrophoresis):
Albumin 59.6% [52.9-65.0]
Alfa 1 -- 3.5% [3.1-5.9]
Alfa 2 -- 7.8% [8.1-13.7]
Beta 10.7% [9.2-14.0]
Gamma 18.4% [9.8-19.0]
IgG subklassen: IgG 3 0.93 [0.20-0.93]
Ferritin (iron stores) 443 [36-373]
GOT (AST) - aspartate aminotransferase 26 [0-40]
GPT (ALT) - Alanine transaminase 31 [0-41]
yGT - Gamma-glutamyl transpeptidase 39 [0-49]
Alkalische fosfatase (alkaline phosphatase) 72 [40-130]

Hormone:
TSH (Thyroid Stimulating Hormone) 1.85 [0.27-4.20]
(25 OH) Vitamin D 18.4 [20.0-43.0] (optimal >30)
1.25 Di-OH vitamin D 41.2 [20-75]

Virology:
Toxoplasmosa IgM neg
Toxoplasmosa IgG neg
Parvovirus B19 IgM neg
Parvovirus B19 IgG pos 24.3 [1.1> pos]
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
Your ferritin is extremely high. My reading in the past found average was around 90 for women. Have you looked into hemachromotosis ?
Yeah it is quite high. I have looked briefly at Hemachromototis. I understand it is often (though not always?) genetic. My 23andme data says I dont have it, based on my dna. It can easily go a lot higher than mine in Hemachromotosis from what I have read. I havent yet looked into whether they test all the relevant markers, but my guess is that they do in this case.

Why is it high then? I dont know. I know that it is often abnormal (high or low) in ME/CFS patients. Once I have the rest of my results and De Meirleir's report I will hopefully know more.
 
Messages
1,016
Likes
994
a couple of hours after i drank the fructose, i started having a lot of digestive issues....i guess this means i am intolerant? maybe this explains why i hated fruit my entire life and my mother had to force me to eat it. i always felt a little sick after, especially with apples.

how do they treat this? no fruit???
yeah
60-70% of the CFS patients of Dr Lewis are fructose intolerant
so basically little fruit
 

ukxmrv

Senior Member
Messages
4,406
Likes
4,569
Location
London
I met another patient for KDM's who had lost considerable weight by giving up fruit (had a reaction to the Fructose test and he suggested that she stop eating it for while to see what happened). She had been obese and trying to lose weight for a long time. Stopped the fruit and finally lost weight.
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Likes
4,826
Location
WA, USA
bezinking (Erythrocyte sedimentation rate - I think) 4 [0-15]
ESR range - some labs will put a lower limit on the reference range. It is said that PWME may have a low ESR. Low ESR is discussed in this article, but how low is "low" is not established there.
http://labtestsonline.org/understanding/analytes/esr/tab/test

Formule (not sure what this is):
given by what comes after, seems to be the differential on the CBC.
http://labtestsonline.org/understanding/analytes/differential
Eosinophils 4% [0-4]
see above article

In addition to the conditions listed in Wikipedia, many PWME have elevated ANA. My computer is unhappy so I can't get refs just now.
 
Messages
69
Likes
10
Got my first few results back from one of the two belgian labs. These tests were a lot cheaper than I antisipated - just under €90. Ranges in square brackets. Red results are out of range. Orange close to range limits. Comments and discussion welcome!

bezinking (Erythrocyte sedimentation rate - I think) 4 [0-15]
hemoglobin 14.8 [13.5-17.5]
hematocrit 43 [40-52]
RBC:
MCV 92 [82-98]
MCH 31 [27-34]
MCHC 34 [32-36]
WBC 5700 [4000-10000]
Formule (not sure what this is):
Lymphocytes 36% [20-45]
Segments 56% [4-70]
Eosinophils 4% [0-4]
Monocytes 7% [0-14]
Basocytes 0% [0-2]
Trombocyten (Platelets) 368 [150-425]
Activated Partial Thromboplastin Time 31 [24-34]

Other immune:
C-reactive protein (CRP) 1 [0-10]
RA (Latex) <10 [0-14]
ANF (Antinuclear factor) 40 [0-40]

Biochem tests:
Urinezuur (Uric Acid) 7.1 [2.2-7.4]
Total eiwit (Total Protein) 74 [60-80]
Eiwit elektroforese (Protein electrophoresis):
Albumin 59.6% [52.9-65.0]
Alfa 1 -- 3.5% [3.1-5.9]
Alfa 2 -- 7.8% [8.1-13.7]
Beta 10.7% [9.2-14.0]
Gamma 18.4% [9.8-19.0]
IgG subklassen: IgG 3 0.93 [0.20-0.93]
Ferritin (iron stores) 443 [36-373]
GOT (AST) - aspartate aminotransferase 26 [0-40]
GPT (ALT) - Alanine transaminase 31 [0-41]
yGT - Gamma-glutamyl transpeptidase 39 [0-49]
Alkalische fosfatase (alkaline phosphatase) 72 [40-130]

Hormone:
TSH (Thyroid Stimulating Hormone) 1.85 [0.27-4.20]
(25 OH) Vitamin D 18.4 [20.0-43.0] (optimal >30)
1.25 Di-OH vitamin D 41.2 [20-75]

Virology:
Toxoplasmosa IgM neg
Toxoplasmosa IgG neg
Parvovirus B19 IgM neg
Parvovirus B19 IgG pos 24.3 [1.1> pos]
Here are my comments on some of your results

Eosinophils 4% [0-4]: eosinophilia may be due to parasitism. Shouldn't be high on a normal pacient.

ANF (Antinuclear factor) 40 [0-40]: autoimmune marker. There are a bunch of others too. Not good to have even one of them positive. In my case ANF=0.

Urinezuur (Uric Acid) 7.1 [2.2-7.4]: Uric acid is a waste of the organism and ideally it would be 0, since is of no use. Having it high may indicate poor diet, prolonged fasting, intense exercise prior to analysis or medical conditions. Some people tend to have it pretty high (>5).

Eiwit elektroforese (Protein electrophoresis): protein deviations may indicate several problem and is not normal to have a single one out of the limits. Even being close to them may make some doctors suspicious as I've been told.

Parvovirus B19 IgG pos 24.3 [1.1> pos]: If you want to look for current infection, probably you should test for B19 antigen (B19 antigen enzyme immunoassay (EIA)), not the antibody that is generated by your body and can be present lifetime.


It looks like a titer result, which is usually done in multiples of 40. So the next highest value would be 80, which I think is usually a borderline possible positive. 40 is pretty negative, but could be worthwhile to check it again some day.
No it's not. Lowest value is not 40, but less than 1 (<1/40).
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
thanks santi for your feedback, it all helps paint the picture.

from the little that I read about ANF, it seemed to be saying that doctors usually only care when it is at more than 160, or sometimes 80, but that seems strange to me. I did have the same test done by the NHS a couple of years ago and that was reported as negative. I also had some other autoantibodies tested at that time and they were reported as negative too.

I suspect that De Meirleir will want to test more for Parvovirus given my result.
 

clive powney

Senior Member
Messages
206
Likes
211
Location
coventry
I'd recommend Infectolab laboratory from Germany for Lyme co-infections (Bartonella, Babesia, Mycoplasma etc.) They are pretty good but prices are very high. I paid 2200€ for whole Lyme panel + Co-infections. I was positive for Bartonella, both Bartonella quintana, and Bartonella henselae, which is not surprising since I have tons of neurological and cognitive problems (brain fog, glass in front of eyes, derealization, dizziness, disorientation).

Interesting, though, even though Infectolab is good lab for Lyme & Co's Lyme tests were negative. For Lyme alone probably the best lab is Lyme Diagnostic from Bucharest, Romania. I went there myself by plane and the tests there were positive for Lyme. They use Direct Microscopy (Dark Field Microscopy) which revealed Borrelias in my blood stream. They also use super wide antibody testing from EuroImmune, Germany which also revealed I'm positive for Borrelia afzelli and garinii.
Did this testing lead to any positive treatment/outcome? I had tests for lyme done in both quest labs and a lab in Brehmen Germany , both came out positive. I was on a variety of antibiotic regimes for around 18 months prescribed by the breakspear clinic in the UK but never got any better
 

clive powney

Senior Member
Messages
206
Likes
211
Location
coventry
thanks santi for your feedback, it all helps paint the picture.

from the little that I read about ANF, it seemed to be saying that doctors usually only care when it is at more than 160, or sometimes 80, but that seems strange to me. I did have the same test done by the NHS a couple of years ago and that was reported as negative. I also had some other autoantibodies tested at that time and they were reported as negative too.

I suspect that De Meirleir will want to test more for Parvovirus given my result.
Snowathlete - you mentioned in an earlier post that you would post how much the tests cost?
 

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Likes
4,826
Location
WA, USA
thanks santi for your feedback, it all helps paint the picture.

from the little that I read about ANF, it seemed to be saying that doctors usually only care when it is at more than 160, or sometimes 80, but that seems strange to me. I did have the same test done by the NHS a couple of years ago and that was reported as negative. I also had some other autoantibodies tested at that time and they were reported as negative too.

I suspect that De Meirleir will want to test more for Parvovirus given my result.
"they" say that it's not unusual for "healthy" people to have a low positive ANA and for this reason titers up to 1:80 are always counted as a negative result.

1:120 (or 160, whichever is the right number for this level) is borderline; some will consider this negative and most will consider it positive, but the significance of it to a normal medical doctor is to watch the patient for development of a recognized autoimmune disease; in the US they would refer to rheumatology for this purpose.
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
"they" say that it's not unusual for "healthy" people to have a low positive ANA and for this reason titers up to 1:80 are always counted as a negative result.

1:120 (or 160, whichever is the right number for this level) is borderline; some will consider this negative and most will consider it positive, but the significance of it to a normal medical doctor is to watch the patient for development of a recognized autoimmune disease; in the US they would refer to rheumatology for this purpose.
so at 40, maybe it is ok...:confused:
 

snowathlete

Senior Member
Messages
5,374
Likes
14,592
Location
UK
Snowathlete - you mentioned in an earlier post that you would post how much the tests cost?
I thought i had done that somewhere, but i may have only meant to, and forgotten.

The costs worked out as follows:
€80 or 90? each of the breath tests
€280(ish - can't remember exact figure) for the stool test
€2,500 Euros for the other blood tests at Redlabs.
€90 for the second lab tests in in Belgium
I think I paid a couple of hundred dollars for a allergies panel from a US lab too. Cant remember exactly.