1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

My huge list of test results; an ongoing journey

Discussion in 'General Treatment' started by Thinktank, Nov 10, 2013.

  1. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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
     
    heapsreal, cigana and Valentijn like this.
  2. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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.
     
    Valentijn likes this.
  3. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,673
    Likes:
    10,072
    Amersfoort, Netherlands
    @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.
     
    taniaaust1 and SickOfSickness like this.
  4. cigana

    cigana Senior Member

    Messages:
    643
    Likes:
    235
    UK
    Interesting, thanks for posting. Do you have any cytokine (eg. IL-8) or immune (eg. CD57) or inflammation (eg. prostaglandin) results from KDM?
     
  5. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    @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: Dec 1, 2013
  6. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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)
     
    Valentijn likes this.
  7. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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?
     
  8. cigana

    cigana Senior Member

    Messages:
    643
    Likes:
    235
    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.
     
    Valentijn likes this.
  9. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,673
    Likes:
    10,072
    Amersfoort, Netherlands
    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.
     
  10. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    @cigana and @Valentijn , sorry to hear they didn't send you the results. I'm a bit of a unique case. I live in Thailand and need the results to decide if i move over to Belgium for treatment.
     
    Valentijn likes this.
  11. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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!
     
    roxie60 and Sushi like this.
  12. Jon_Tradicionali

    Jon_Tradicionali Senior Member

    Messages:
    192
    Likes:
    137
    Zogor-Ndreaj, Shkodër, Albania

    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?
     
  13. Helen

    Helen Senior Member

    Messages:
    569
    Likes:
    583
    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.
     
  14. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    @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?
     
  15. Helen

    Helen Senior Member

    Messages:
    569
    Likes:
    583
    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.
     
    roxie60 likes this.
  16. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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: Feb 24, 2014
  17. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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
     
    Valentijn likes this.
  18. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,673
    Likes:
    10,072
    Amersfoort, Netherlands
    @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.
     
  19. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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.
     
    heapsreal, Sushi and Valentijn like this.
  20. Thinktank

    Thinktank Senior Member

    Messages:
    402
    Likes:
    209
    Europe + South East Asia
    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.
     
    heapsreal and Valentijn like this.

See more popular forum discussions.

Share This Page