• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

My huge list of test results; an ongoing journey

Thinktank

Senior Member
Messages
1,640
Location
Europe
Here i will keep track of all my testresults until my own personal website is up and running, in hope somebody will recognize a pattern or has any other feedback.

I've seen Dr. KDM a few weeks ago and the testresults are dripping in. I'd love to post all the past results but that will be too much work at the moment so i'll just start off with KDM's research. As soon as there's an update i will add it to this post.

REDlabs big list pending
US biotek pending

InfectolabBorrelia elispot LTT ref. range
Borrelia burg. Full antigen +4 <2
Borrelia OSP-mix 1 <2
Borrelia LFA 0 <2

Not ordered by KDM but done 2 months ago in a hospital
Borrelia IGM negative
Borrela IgG positive 1:800 (=medium)

Himmunitas fuctose / lactose breathetest
Fructose breathetest negative (although it really messed me up for the rest of the day)
Lactose breathetest negative (This mixture hurt my stomach and i had the big D later that day)

Lab. Medische ontledingen (result -> ref.range)
HEMATOLOGIE
ESR after 1 hour 5 mm 0 - 15
Hemoglobine 15,8 g/dL 13,5 - 17,5
Hematocriet 47 % 40 - 52
Red bloodcells 5,07 milj./ÓL 4,50 - 6,20
MCV 93 fL 82 - 98
MCH 31 pg 27 - 34
MCHC 34 g/dL 32 - 36
White bloodcells 4800 /ÓL 4000 - 10000
Formule
Lymfocyten 40 % 20 - 45
Segmenten 51 % 40 - 70
Eosinofielen 2 % 0 - 4
Monocyten 6 % 0 - 14
Basofielen 1 % 0 - 2
Trombocyten 286 X 1000/ÓL 150 - 425

HEMOSTASE
Part.trombo time 32 sec 24 - 34

IMMUNOLOGIE
CRP <1 mg/L 0 - 10
RA-latex <10 IU/mL 0 - 14
Antinucleaire factor 40 1/Titer 0 - 40 <

VIROLOGIE
Cytomegalie IgM 0,1 ???? 1,1<
Cytomegalie IgG Negative
Epstein Barr IgM Negative
EBNA IgG Negative

BIOCHEMISTRY
Urinezuur 5,9 mg/dL 2,2 - 7,4
Totaal Protein 72 g/L 60 - 80

Protein elektroforese
Albumine + 65,8 % (elevated) 52,9 - 65,0
Alfa-1 3,4 % 3,1 - 5,9
Alfa-2 - 7,7 % (low) 8,1 - 13,7
Beta 10,3 % 9,2 - 14,0
Gamma 12,8 % 9,8 - 19,0

IgG 3 0,28 g/L (a bit low?) 0,20 0,93 <

GOT (AST) 12 U/L 0 - 40
GPT (ALT) 14 U/L 0 - 41
Gamma-GT 27 U/L 0 - 49
Alkalische fosfatase 71 U/L 40 - 130

Vitamine D3 (25 OH-) 27,7 Óg/L (Low + VDR heterozygous mutation) 20,0 - 43,0
* 1,25 Di-OH vitamine D - Later

SCHILDKLIER
TSH 2,51 mU/L 0,27 - 4,20

HORMONOLOGIE
DHEA-sulfaat 241,6 Óg/dL 160,0 - 449,0
Aldosteron <6,0 ng/dL Lying position: 3,0 16,0
I think these values are a bit low and i want my adrenals to be checked further.

Now some of the more interesting stuff

Lymfocytes (results -> ref range)
T-cells
CD3+ 76% - 1692mm/3 57,0 - 83,2% 974 - 2056
CD3+CD4+ 44% - 979 26,8 - 66,1% 510 - 1444
CD3+CD8+ 31% - 690 12,7 - 39,6% 208 - 924
CD4/CD8 1,42 0,81 - 3,64
CD3+CD16+CD56+ 3% - 67 2,1 - 13,7% 35-309
CD3+CD16+CD56+ a bit on the low side?
B-cells
CD19+ 7% - 156 4,6 - 17,1% 90 - 385

NK-cells
CD3-CD16CD56+ 12% - 267 6,0 - 30,7 115 - 669

Other
CD45+ 100 - 2226 1389 - 2881
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I received the results on the IgG 96 foods panel from US-biotek.

Extremely high IgG reaction:
- Casein
- Cheese,cheddar
- Cheese, cottage
- Cheese, mozarella
- Milk, bovine
- Milk, goat
- Whey
- Yogurt :cry:, my favorite source for probiotics, for me nothing works as good as yogurt or VSL#3)
- Egg, white
- Egg, yolk
- Duck egg whole

Moderate IgG reaction:
- Barley
- Bean, string
- Gliadin, wheat
- Gluten, wheat
- Oats
- Spelt
- Wheat, whole

The G.I. effects test came back as well and it surprised me a bit.

G.I. effects Main findings are:
Obligate anaerobes:
- Extremely low clostridia
- Low fusobacteria
- Borderline high streptomyces

Faculative anaerobes:
- Extremely low bifidobacter

Opportunistic bacteria:
- Achromobacter / Alcaligenes spp. positive

Fungi:
- Saccharomyces spp. +2 growth

Drug resistance genes:
- aacA, aphD - positive

Beneficial SCFA
- Extremely low total SCFA
- Extremely low n-butyrate
- Extremely low valerate

pH:
5.5 = low

I have inflammatory bowel disease in the small intestine and colon (Crohn's suspected by gastroenterologist but i highly doubt it). I've done the immunology marker tests like lactoferrin etc. multiple times and they are always low or within limits. this time:

Fecal sIgA: 77 = normal
Calprotectin = <16 = normal
Eosinophil protein x = 3.0 = slightly elevated
Lactoferrin = 0.4 = normal to low
WBC = negative
Mucus = negative

Just a few more weeks until i receive the results from REDlabs MSA stooltest.

So it's back to the drawing board.
What i'm planning to do is to design a 4 or 7-day rotation diet.
Avoid all:
- Grains (except white rice)
- Dairy and dairy derived products (also no butter)
- Eggs
- Beans
- Soy

I'm also having difficulties with foods high in histamine or which are histamine-liberating.

What i'm wondering is if one has an extremely high IgG reaction against a certain food, then how's the IgE, IgA (fecal) and IgM reaction to it?
US-biotek also offers IgE and IgA testing. I read about a lab that offers IgA testing from a fecal sample and another one that does IgM. I guess the best thing is to check it all. KDM believes my allergies are caused by an imbalance in my th1/th2 immunity.
 
Messages
15,786
@Thinktank - If you really still want butter, Ghee is a nice alternative. It's made from butter, but is refined so that only the fats are left, and none of the dairy proteins.

There are also coconut-based yogurts available, which actually taste quite nice. And almond milk is the best milk-substitute in my opinion, as long as you can accept that it doesn't taste like milk. Nutty and naturally slightly sweet - great with cereals and hot drinks, maybe not so good with baking or cooking. Coconut milk (not coconut water) is great for sauces.
 

cigana

Senior Member
Messages
1,095
Location
UK
Interesting, thanks for posting. Do you have any cytokine (eg. IL-8) or immune (eg. CD57) or inflammation (eg. prostaglandin) results from KDM?
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@Valentijn, i'm planning to introduce Ghee into a later phase. It's not because i need butter so much, it's because it's a great source for saturated fat and CLA.

@cigana, I should receive the results from REDlabs for the cytokines, CD57 and prostaglandin (E2) within 1 to 2 weeks.

Proinflammatory cytokines panel (IL1 , IL6, IL8, IL10, IL12p70, TNF, TGF1, MIP1, MCP1)
Cytokine RNA, Th1/Th2 (IL2, IL4, IFN mRNA)
Perforin expression (NK cell activity)
Elastase
CD57+/CD3- Absolute count
NK cells (CD16/CD56) abs. count
Soluble CD14
C3A Serum level
C4A serum level
Prostaglandin E2
Vascular endothelial growth factor (VEGF)
IgA/IgM oxidative products
Phagotest: Macrophage activity
Nagalase Activity
HHV6 Human Herpesvirus 6
HHV7 Human Herpesvirus 7
HHV8 Human Herpesvirus 8

Borrelia burgdorferi sl / PCR
Bartonella spp / PCR
Enterovirus (RNA)
Molds igG panel
SeroBORREL
Chlamydias serologie- IgG & IgA/M
Parvovirus B 19 serology- IgG & IgA/M (Immunoblot)
Zoonosis
Mycobacterium QuantiFeron GOLD
Toxoplasmosis serologie- IgG & IgM
Schistosomiasis (Bilharziosis)
Filariosis
Fasciolaria (Serology)
IgA/IgM intetinal bacteria
Soluble Immunoglobuline A
Metagenomics stool Analisys

FOB-Trans. + Lactof.-Calprot.
Cryptosporidium/Gardia Ag
Helicobacter Pylori Ag
Entamoeba Histolytica
Clostridium difficile
Tularemia
 
Last edited:

Thinktank

Senior Member
Messages
1,640
Location
Europe
I just received most of the results from REDlabs! I had to look twice when i saw their email in my inbox but it's real and finally here! I'll post the results later.

@cigana
IL8 = 1174 (ref. range = 0 to 15) !!!!!! o_O
CD57 = 61 (ref. range = 60 to 360
PGE2 = 17,57 (ref. range = 0,17 to 6,45)
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I've had a lot of tests done by REDlabs so i'll only post the abnormal results for now.

C4 A Serum level = 0,56 (ref. range = 0,57 - 1,68 ratio) L
Elastase expression = 351 (ref. range = 0,00 - 150,00 ratio)
Nagalase Activity = 1,10 (ref. range = 0,32 - 0,95 nmol/min/mg) H
Perforin mRNA expression = 864 (ref. range = 250,00 - 750,00 ratio) H
Prostaglandine E2 = 17,57 (ref. range = 0,17 - 6,45)
Phagotest (macrophage activity) = 51,3 (ref. range = 65,00 - 95,00 %) L
Soluble CD14 = 4171 (ref. range = 1430,00 - 2800,00 ng/ml) H
IL-8 serum = 1174 (ref. range = 0,00 - 15,00 pg/mL) H
MCP1 = 523 (ref. range = 0,00 - 165,00 pg/mL) H
MIP-1BETA serum = 189 (ref. range = 0,00 - 155,00 pg/mL)

Any thoughts?
 

cigana

Senior Member
Messages
1,095
Location
UK
Hi Thinktank,
Thanks for posting these. They look very similar to mine. A lot of us seem to get very high IL-8, I don't know why this is and why it's not seen in the studies I've looked at. I suspect you will be tested for zoonoses.
If you'd like to add your results to a private collection of KDM patient results, send me a PM.

p.s. Did Redlabs send you the results no problem? When I ask them for results they say they can only send them to my doctor.
 
Messages
15,786
p.s. Did Redlabs send you the results no problem? When I ask them for results they say they can only send them to my doctor.
I haven't contacted Redlabs yet, but I did try getting results from Infectolab and got the same response - they sent the results to my doctor, and I need to talk to his office to get the results. No response from them yet.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
I've seen KDM and he believes i have chronic borrelia lyme's + possible bartonella infection and neuroborreliosis.
A 12-week course of IV abx is planned... It's a going to be a long and bumpy ride!
 

Jon_Tradicionali

Alone & Wandering
Messages
291
Location
Zogor-Ndreaj, Shkodër, Albania
I've seen KDM and he believes i have chronic borrelia lyme's + possible bartonella infection and neuroborreliosis.
A 12-week course of IV abx is planned... It's a going to be a long and bumpy ride!


I'm also planning to set up an appointment with KDM. Do you think it's worth it?

What's his theory on CFS, does he believe in the hhv6/ebv/cmv/parvob19 connection?

Also what were your results for the virus?
 

Helen

Senior Member
Messages
2,243
I've seen KDM and he believes i have chronic borrelia lyme's + possible bartonella infection and neuroborreliosis.
A 12-week course of IV abx is planned... It's a going to be a long and bumpy ride!

Best of luck with your treatment!
Does Kenny De Meirleir make lumbar punctions for analysis of spinal fluid to diagnose neuroborreliosis? Or how does he diagnose neuroborreliosis? If you would like to share the labtests that pointed to a Lyme diagnose it would be of great help. I am under investigation for neuroborreliosis too, and have an appointment with KDM in february for a second opinion.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
@Jon_Tradicionali , Yes it's worth it. He often finds infections no other doctor has ever thought about.
Yes, he also tests for the viral infections you mentioned.
For me the results for viral infections were all negative but that doesn't mean anything. The only positive one was IgM on CMV.

@Helen, thank you.
I've no idea if he does lumbar punctions. Spinal fluid is often negative for neuroborreliosis so i don't think it's a method he often uses but i will ask him next time.
I was already heavily brainfogged that day and on top of that completely stunned by the diagnosis so i don't remember much of my talk with KDM, i'm sorry i cannot be of more help.
What kind of testing for (neuro)borreliosis have you done and where?
 

Helen

Senior Member
Messages
2,243
@Helen, thank you.
I've no idea if he does lumbar punctions. Spinal fluid is often negative for neuroborreliosis so i don't think it's a method he often uses but i will ask him next time.
I was already heavily brainfogged that day and on top of that completely stunned by the diagnosis so i don't remember much of my talk with KDM, i'm sorry i cannot be of more help.
What kind of testing for (neuro)borreliosis have you done and where?

Thanks for sharing. In Sweden you must have cells in spinal fluid and a so called positive index; a ratio between IgG in blood and spinal fluid taken at the same occasion, to get the diagnosis of neuroborreliosis. Though I have symptoms for a neuroborreliosis and reacted well on 2 weeks treatment with Doxycycline (that is supposed to be enough :-( ) I have a hard time getting to know if I have this diagnosis or not. ( I am consulting Infectolabs in Germany now who also uses Redlabs in Brussels.)

I got a lumbar punction at hospital in Sweden, and all above mentioned analysis where negative, though IgG was positive. So interesting you wrote that spinal fluid is often negative. Do you remember if this was written anywhere? I am referred to the "star professor" in Lyme, so exciting to see what comes out of that. The appointment with KDM is for safety...

I can imagine you where stunned by the diagnosis, but I hope this will come out as the solution for your health problems. An interesting link, at least for methylation believers http://www.lymeinfo.net/methylationblock.html. I think Rich is right.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Second round of testing done in December revealed:

Macrophage activity has even declined further to 35% (normal = 65 to 95%).

PCR on bartonella, anaplasma, Brucella, Ehrlichia all negative

IgA / IgG on Yersinia negative

Immunoblot on Yersinia negative

Sputum: Chlamydia pneum. and chlamydia psit. negative

This was all to be expected because the blood was drawn pre-IV abx treatment, some of the creatures will probably not show up until a while on IV abx so it will all be retested on my next visit.

I'm soon starting with 25ng gcMAF and nexavir, i'm already on IV ceftriaxone. My macrophage activity score is really low so let's see what the combo GcMAF/nexavir will bring me!

Maximum ventilation on stress test / spirometry is only 28 l/min or 20% of the expected value!
Maximum oxygen uptake is 1.062 l.min-1 or 51% of the expected value.
Dyspnea is caused by respiratory muscle weakness (very low VEmax)
I don't know what to do with the spirometry / stress test score, visit my pulmunologist? I need to do something about it.
 
Last edited:

Thinktank

Senior Member
Messages
1,640
Location
Europe
MSA DNA PCR stooltest results

Indicative of gut inflammation and low diversity.
The thing that jumps out is bifidobacteria is almost non-existent and the overgrowth of bacteroides and blautia.

Abnormalities (a lot more was tested but the list is too long to type over, maybe i'll add a screenshot later):
Total lachnospiracae 3,44 (should be 5>)
Total ruminococcaceae 0,46 (should be >5)
Ruminococus 0,02 (should be 2>)
Turicibacter 0,02 (should be 0,5>)
Bacteroides 14,37 (should be <10 )
Bifidobacterium 0,05!!! (should be >5)
Asaccharobacter 0 (should be >0,1)
Eubacterium 0,14 (should be <0)
Blautia 71,3 (should be <50)
Turicibacter 0,02 (should be >0,5)
Olsenella 0,02 (should be <0)

Total:
Firmicutes 78,55%
Bacteroidetes 16,14%
Actinobacteria 5%
Proteobacteria 0,05%
Other 0,26%

Other bacteria found:
Anaerovorax 0,03
Corynebacterium 0,02
Eggertheila 0,07
Gemella 0,09
Granulicatella 0,07
 
Messages
15,786
@Thinktank - I also have low Ruminococcus, Turicibacter, and Bifibdobacterium (0!). Though my high ones are different: 29.5% Faecalibacterium and 0.12% Lactonifactor.

My "others" which you also have are Anaerovorax and Granulicatella. I couldn't find much info on the Anaerovorax. It looks like Granulicatella is a common (normal) oral bacteria, but can also cause endocarditis or CNS infection.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
My bloodwork results came in today and i'm quite surprised about it.
Most numbers have improved, especially nagalase, macrophage activity and IL-8. Unfortunately these numbers don't really reflect how i feel at the moment. I'm having huge bouts of depersonalization, a very toxic feeling and all my cognitive functions are 10% of normal. But anyway, things are shifting for the better!

Nagalase (improved)
October 2013 = 1,10
May 2014 = 0,8

Macrophage activity (improved)
October 2013 = 51,3%
December 2013 = 35%
May 2014 = 87,02%!

Perforin mRNA expression (worsened)
October 2013 = 864
May 2014 = 901

PGE 2 (worsened)
October 2013 = 17,57
May 2014 = 19,01

Soluble CD14 (improved)
October 2013 = 4171
May 2014 = 3001

IL-10 serum (same)
October 2013 = 1
May 2014 = 1

IL-12p70 serum (same)
October 2013 = 0
May 2014 = 0

IL-1beta serum (improved)
October 2013 = 3
May 2014 = 1

IL-6 serum (same)
October 2013 = 3
May 2014 = 3

IL-8 serum (improved by over 100%)
October 2013 = 1174
May 2014 = 512

MCP1 (improved by nearly 100%)
October 2013 = 523
May 2014 = 271

MIP-1BETA serum (worsened, because of better macrophage activity???)
October 2013 = 189
May 2014 = 256

Activated TGF-BETA1 serum (lowered, still in normal range)
October 2013 = 7310
May 2014 = 3825

TNF serum
October 2013 = 1
May 2014 = 0

VEGF
October 2013 = 140
May 2014 = 1,18

Still negative on serology for borrelia and all co-infections but weakly positive for borrelia burgforferi on LTT from infectolab.
 

Thinktank

Senior Member
Messages
1,640
Location
Europe
Got my standard CBC, liver enzymes etc. tested again.
White blood cell count is low (4749). Neutrophils are low (47%) and lymphocytes (44%) are high again.... :mad:
ANA negative
Suprisinginly, CRP = <0.1 and ESR = 2

Thyroid seems to be working fine
T3 = 98
FT3 = 2.96
T4 = 6.95
FT4 = 1.18
TSH = 2.89

Homocysteine = 9.7, i want to lower this

Electrolytes all nicely balanced

Liver function only slightly elevated Albumin / Globulin ratio = 1.8
and Total bilirubin = 1.8
AST/ALT and ALK. phosphatase are all very low which i expected to be increased now i'm on oral antibiotics

Low HDL = 56
and high LDL = 110, but i have had this for a long time since becoming sick. LDL often increases with infections.

Basic chemistry is all normal

I don't know what to make out of this. Based on these basic bloodtests there is still an active infection going on, am i now resistant to doxy and clarithromycin? The only time all of the values returned within normal range was whilst on IV ceftriaxone.