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

cigana

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Cigana-
I too would like to know more about this.

SanDiego
There is not much to tell, I was found positive for Rickettsia and Bartonella (by IgM) and not Lyme initially. We tested further for Lyme and eventually I was positive on PCR and this was confirmed by genetic sequencing. I have started antibiotics for Lyme. KDM seems to think the Lyme is the source of my problems. I also have high nagalase and some extremely high immune response to the Lyme (cytokines) which he believes are causing my symptoms. The plan is to treat with both antibiotics and get my immune system working.
 

cigana

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Hi cigana, was Lyme a surprise to you or did you have reason to suspect it?
It was a surprise, I don't consider myself an outdoors kind of person, living in the city etc. I have been outdoors on occasion though. Lyme was fairly close to the bottom of my list of things to treat.
 

Sushi

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It was a surprise, I don't consider myself an outdoors kind of person, living in the city etc. I have been outdoors on occasion though. Lyme was fairly close to the bottom of my list of things to treat.
We can blame some of this on mosquitoes! It is known that some are spreading Lyme now, and the little pests are everywhere.

Sushi
 

snowathlete

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That's interesting Sushi, about Mosquitos. I know fleas can also spread a bunch of stuff - don't know if Borrelia is one of them? It's definitely worth testing for thoroughly but the NHS don't look hard if they even look at all.
 
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Yes, Sushi, Lyme can be also carried by mosquitoes, fleas, flies, and it's also theorized it can be transmitted through intercourse.. You can get it also congenitally.

cigana how are you being treated for Lyme?
 
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Hi Cigana et al,

Re rickettsia infection...this like lyme is difficult to treat(from my own experience)...I'm infected by two types.The Tropical Diseases Hospital(London)doesn't recognise Rickettsia infection as a long term problem(but I don't agree with that).I probably have had the infections for the best part of fifty years.I probably picked it up in the tropics.The NHS in my case haven't recognised/mentioned/dealt with it at all(that includes a CFS Clinic).Dr Cecile Jadin's(Johannesburg/Belgium)book "A disease called Fatigue"is worth reading.It is not a reference book but it explains clearly what rickettsia are/how obtained/what they do.Dr Jadin uses antibiotics(in pairs/pulsed)/other supplements to treat this infection.Diet is important too...excluding sugars etc too.You can see her work on the web.Her father was a well known Professor(Belgium/Africa)who specialised in such things as Rickettsia(Central Africa)

Glad to hear that you survived your long trip snowathlete.It will be interesting to see what your results show and more importantly how you feel once you begin your treatment
 

snowathlete

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yeah, treatment....looking forward to starting but i expect it could make me feel worse before i feel better, so in that respect, im not looking forward to it.
It'll be nice to start doing something about this illness though. Will be interesting to see what stuff i am positive for!
 

justy

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Hi Snow - i wonder if you feel able to tell us a bit more, on this thread, about your trip. Did you stay at Eurovolley? how was it. How long did you need to be there for - what tests did you go for. How was the appointment?

I have had to put mine off till the autumn (pretty pissed off with that) need more time to get the funds together.
Glad you made it there and back in one piece and hope you find some answers.

Justy.
 

snowathlete

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Hi Justy, sorry for the delay, I've been busy writing about my trip. It might be a few weeks but an article will appear on the site talking a lot about the travel, de meirleir and the clinic, costs, etc. Hopefully you and others will find it helpful.

I did stay at the euro volley yes. Some pros and cons but a major benefit is that they know about de meirleirs clinic and offer a cheap service to ferry you back and forth, which is SO useful. You can get cheaper, good hotels if you book a deal at the same time as the Eurostar but they are more central to Brussels so you have to factor in train/taxi rides each day if you do that. Not impossible though. Sorry you had to put it off. I know how that feels - I originally planned (even booked it) for last summer but then my wife got appendicitis! That was frustrating. Don't worry your trip will come round before you know it!

I was there for two days but I think you could do it in one if you don't have both fructose and lactose breath tests (I had one done each day).

I had a lot of tests! I'll try to post them here in the new few days too.
 

maryb

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I was there for two days but I think you could do it in one if you don't have both fructose and lactose breath tests (I had one done each day).

Not unless you have recently had fructose and lactose tests done as it is one of the requisites of the first visit. Understandably he has to rule out these intolerances.
 

Sushi

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Hi Justy, sorry for the delay, I've been busy writing about my trip. It might be a few weeks but an article will appear on the site talking a lot about the travel, de meirleir and the clinic, costs, etc. Hopefully you and others will find it helpful.

I did stay at the euro volley yes. Some pros and cons but a major benefit is that they know about de meirleirs clinic and offer a cheap service to ferry you back and forth, which is SO useful. You can get cheaper, good hotels if you book a deal at the same time as the Eurostar but they are more central to Brussels so you have to factor in train/taxi rides each day if you do that. Not impossible though. Sorry you had to put it off. I know how that feels - I originally planned (even booked it) for last summer but then my wife got appendicitis! That was frustrating. Don't worry your trip will come round before you know it!

I was there for two days but I think you could do it in one if you don't have both fructose and lactose breath tests (I had one done each day).

I had a lot of tests! I'll try to post them here in the new few days too.
The Eurovolley also lets you use their fridge and freezer which is important if you have meds or suppls that have to be kept cold and/or GcMAF that has to be kept frozen.

Sushi
 

snowathlete

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The article is up now on the main page, so you can go read all the details about my trip if you want.
Here is a list of all the tests I had:

Intollerances/allergy/exposure etc
Fructose breath test
Lactose breath test
Food alergy panel
IgA/IgM oxidative products
Molds IgG panel
Urine-neurotoxine test

Immune
Proinflamatory cytokines panel
Cytokines RNA, Th1/Th2
Perforin expression
Elastase
CD57+/CD3- absolute count
Solube CD14
C4A serum level
Prostaglandin E2

Genetic and activity assays
GVDM polymorphisms
Nagalase activity

Pathogens
HHV6
HHV7
EBV
Borrelia burgdorferi sl / PCR
Bartonella spp / PCR
Babesia spp / PCR
Stool test
Borrelia serology panel (B. burgdorferi ss, B. afzelli, B. gariniii, B. spielmanii, B. bavarinensis)
Zoonosis serology screening panel (Bartonella henselae, Borrelia burgdorferii, Coxiella burnetti, Rickettsia conorii)
Toxoplasmosis IgG and IgM

There are a few more on another sheet, that i'll try to get up tomorrow after some sleep.
 

snowathlete

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and the rest:
Other blood tests - some are in Dutch:
bezinking (Erythrocyte sedimentation rate - I think)
hemoglobin
hematocrit (RBC)
WBC
Formule (not sure what this is)
Trombocyten (Platelets)
Activated Partial Thromboplastin Time

Other immune:
C-reactive protein (CRP)
RA (Rhematoid Arthritis?)
ANF (Antinuclear factor)

Biochem tests:
Urinezuur (Uric Acid)
Total eiwit (Total Protein)
Eiwit elektroforese (Protein electrophoresis)
Ferritin
GOT (AST) - aspartate aminotransferase
GPT (ALT) - Alanine transaminase
yGT - Gamma-glutamyl transpeptidase
Alkalische fosfatase (alkaline phosphatase)

Hormone:
TSH (Thyroid Stimulating Hormone)
(25 OH) Vitamin D

Wow. I'm exhausted just looking at these lists.
 

snowathlete

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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]
 

Valentijn

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snowathlete, it looks like the positive Parvo IgG with negative IgM means past exposure but no current infection. Might have had a role in triggering things, but it looks like it's a very common virus, with 90% of people aged 60+ having had it.

The second "Alfa" is probably Alpha-2 , and low levels can indicate Hemolytic Anemia. I think it's possible that if you have hemolysis (abnormal breaking down of blood cells), it could also explain the elevated ferritin, since you'd have less blood cells to make use of the iron so more would be getting stored.
 

snowathlete

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snowathlete, it looks like the positive Parvo IgG with negative IgM means past exposure but no current infection. Might have had a role in triggering things, but it looks like it's a very common virus, with 90% of people aged 60+ having had it.

The second "Alfa" is probably Alpha-2 , and low levels can indicate Hemolytic Anemia. I think it's possible that if you have hemolysis (abnormal breaking down of blood cells), it could also explain the elevated ferritin, since you'd have less blood cells to make use of the iron so more would be getting stored.
Thanks Val. I think you're right about the Parvo, though I wonder how the IgG result (24.3) compares with others with ME/CFS.

Yes it is Alpha 2 - I just edited it to say 2, as i missed that out before. Interesting about the possibility of hemolysis and I guess you could be right about the knock-on impact with iron stores. Though my RBC count from a few years ago was high end of normal.

The high-normal result for anti nuclear antibody interests me. Not really sure what it means though being high-normal.
 

Valentijn

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The high-normal result for anti nuclear antibody interests me. Not really sure what it means though being high-normal.
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.
 

Sushi

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Yes it is Alpha 2 - I just edited it to say 2, as i missed that out before. Interesting about the possibility of hemolysis and I guess you could be right about the knock-on impact with iron stores. Though my RBC count from a few years ago was high end of normal.

The high-normal result for anti nuclear antibody interests me. Not really sure what it means though being high-normal.
Hi Snow,

My Alpha 2 was 8.9, so a bit more in range.

My anti-nuclear antibody was the same as yours. I only have the pre-treatment results from this lab. Somehow I didn't get the "year later" report and forgot to follow up on it.

Sushi