In Belgium to see Dr de Meirleir

[Jenny]

KDM has had many UK patients try to get IV abx for Borrelia and/or Bartonella. He would assume that since you are in the UK, you could not get them as no one else has succeeded as far as I know.

Sushi

I had 12 weeks IV abx from the Breakspear clinic for alleged borrelia and other bacterial infections. (Also previously had years of oral abx.) The treatment did nothing. Breakspear then said I probably hadn't had any of these infections after all, and the tests were probably unreliable.

I think they are using other tests now and still giving IV abx where 'indicated'. I don't know anyone with ME who has been helped by this treatment.

 

[Katherine]

@Katherine, this sound slike something you might want to discuss directly wth KDMs office, if you feel your own options were not sufficiently addressed there.

Exactly, but since Valentijn posted that she was due to start IV antibiotics, I just wondered if other people had been given that choice or not All patients visiting KDM would have an interest in that.

 

[Sushi]

@Katherine, this sound slike something you might want to discuss directly wth KDMs office, if you feel your own options were not sufficiently addressed there.

@Katherine Have you been taking oral abx? If you want to try them IV, why not call KDM and let him know you would like to?

Sushi

 

[Katherine]

@Katherine Have you been taking oral abx? If you want to try them IV, why not call KDM and let him know you would like to?

Sushi

Thankfully, I avoided taking the antibiotics until I have completed a few more tests, so there is still an opportunity to discuss the treatment

 

[Valentijn]

All of my test results, and diagnostic info, preliminary treatment plan, and prescriptions arrived today

I tested seronegative for Lyme, but positive for Lyme via infectolab Elispot LTT
Fully Antigen: 1 (<2)
OSP-Mix: 2 (<2) - Outer Surface Proteins
LFA-1: 0 (<2)

I was also seropositive for Yersinia IgG and seronegative for IgA.
YOP M: 1 IgG, +/- IgA (Outer Protein: inhibits part of the immune reaction, caspase-1)
V-AG: +/- IgG, - IgA (V antigen, virulence factor)
PsaA: - IgG, - IgA (Identifies Yersinia pseudotubeculosis)
YOP D: ++ 3 IgG, +/- IgA (Outer Protein: pore formation & translocation of effectors)
MyfA: - IgG, - IgA (Identifies Yersinia entercolitica)
YOP E: +/- IgG, - IgA (Outer Protein)
Total: 4 IgG (positive), 0 IgA (negative)

Bartonella was all completely negative, tested several different ways due to symptoms. Chlamydia was all negative, with just a few "very low intensity" reactions.

Lactose and Fructose breath tests were negative for a reaction. Food reactions showed Banana, Cranberry, Pineapple, and Broccoli are problematic, which is similar to an earlier test, but doesn't show my reaction to eggs, dairy, wheat, soy, etc.

Calprotectin, fecal blood, lactoferrin, transferrin, and sIgA were all normal. Basic hematology and lymphocytes are all in range, though NK cells are on the low end: 8% (6-30.7), and B cells are a bit on the high end: 15% (4.6-17.1).

ESR was elevated, as always: 21mm (0-15). Normal ANA and RA-latex, though CRP was at the high end of normal: 9mg/L (0-10). D3 25 OH- is normal, but there wasn't enough blood to test for 1,25 Di-OH. Liver enzymes are normal, and TSH is in range: 3.71mU/L (0.27-4.2)

Stool bacteria was a bit whacky. No bifidobacterium present, though it should comprise at least 5% of bacteria. Ruminococcus was also low: 0.12% (>2), as was Turicibacter: 0.12% (>0.5). I was high in Lactonifactor: 0.12% (0), and very high in Faecalibacterium: 29.5% (<25, normal = 5%). So some ratios were off, indicating dysbiosis. I also had trace amounts of Anaerovorax, Butyricimonas, Granulicatella, Phascolarctobacterium, and Veillonella.

ANOX total antioxidant capacity is 1.08 nM (0.33-0.65)
Perforin mRNA exression: 784 ratio (250-750)
Prostaglandin E2: 5.64 (0.1-2.81)
Soluble CD14: 3070 ng/mL (1430-2800)
IL-8 serum: 727 pg/mL (0-15)
MCP1: 204 pg/mL (0-165)

The other interleukins were normal, though IL-6 was borderline high: 3 pg/mL (0-3). C3 and C4 were normal, and HHV-6 and candida were negative/normal. Elastase and negalase were also normal, plus VEGF. CD57 was at the low end of normal: 63 cells/uL (60-360).

For the stress test Spirometry:
IVC: 4.12
IRV: 2.18
ERV: 0.44
VT: 1.50
And the stress test Flow/Volume:
FVCex: 3.87 (predicted 3.59)
FEV1: 3.30 (predicted 3.12)
FEV1/VCin: 80 (predicted 82)
MIF25: 2.29
MIF50: 3.53
MIF75: 3.42
MEF75-85: 4.60
PEF: 4.89 (predicted 7.05)
PIF: 3.64
AREAex: 12.01 (predicted 10.72)
There's also a couple charts I don't understand, and will look into more later.

The packet included an introductory letter intended for other doctors, describing my symptoms, medical history, summary of the test results, statements of disability, summary of exercise testing results, and diagnosis. The exercise summary states that I got to 101% of my theoretical maximal heart rate at exhaustion (168) and 140 watts. ECG was normal, but VO2 max was 52% of the expected value at 11.9mL kg/min. Anaerobic threshold is listed at 80 Watts and heart rate of 130, though realistically I'm in trouble if I spend much time over 110. RQ was 1.23 at exhaustion, and maximal ventilation was 47% of the expected value at 54 L/min.

Regarding disability:
Karnofski score estimated at 50-60%, which ranges between "Requires occasional assistance, but is able to care for most personal needs." and "Requires considerable assistance and frequent medical care." according to Wikipedia.
On the A.M.A scale of disability, I'm rated as "Class IV" for very low exercise capacity (described as "severe" in most documentation regarding the AMA scale).

 

[Valentijn]

2 month treatment plan:
Diet low in simple sugars
Creon 150, 1 per meal
VSL-3, 1 per evening
HydroxoB12 injection, twice per week
Lipospheric Vitamin C, 1 gram per day
Glucaplex, twice per day
4ME, 2cc per day
2 liters of water per day

Then I go back for another visit, then get prescriptions for the IV antibiotics and such. The only thing I have any reservations about in the above list is Glucaplex - I don't do well with yeast extracts, and mushroom extract might also be high in free glutamic acid.

 

[Firestormm]

@Valentijn Thanks. Quite interesting. What did you think of it all overall? Happy with the results, confused, or a bit pissed off? Dysbiois is an interesting phenomenon. Can be corrected without specific treatment I understand, but I remain concerned at the effect over-prescribing antibiotics can have. What treatments have been prescribed or do you have to return to find out? I do have trouble regarding the micobiome as a static structure - which is what single test results imply - it's constantly changing of course, but I guess any notable irregularities will indicate something more worrisome that might be corrected with (I guess) probiotics or changes to diet.

Crossed posts

 

[Sushi]

@Valentijn

That IL 8 is super high! Might be causing some symptoms for you.

Sushi

 

[Valentijn]

@Valentijn Thanks. Quite interesting. What did you think of it all overall? Happy with the results, confused, or a bit pissed off? Dysbiois is an interesting phenomenon. Can be corrected without specific treatment I understand, but I remain concerned at the effect over-prescribing antibiotics can have. What treatments have been prescribed or do you have to return to find out? I do have trouble regarding the micobiome as a static structure - which is what single test results imply - it's constantly changing of course, but I guess any notable irregularities will indicate something more worrisome that might be corrected with (I guess) probiotics or changes to diet.

I'm quite happy with the results.

1) The exercise stress test results are extremely useful - they are a mainstream and objective indication of severe disability, in my case even without a 2nd day repeat. If I need to obtain disability benefits at some point, those results pretty much make the entire case on their own, even in the US which can be a bit draconian and inconsistent when it comes to benefits. I can also use those results to tell various medical professionals and therapists to "suck it" when they tell me I'm not ill and/or just need exercise, which would be highly satisfying The Karnofski score and A.M.A disability score included in the letter are also quite helpful in that regard.

2) I have various gut issues, and non-allergy immune reactions to a lot of foods, so it's good to know at least part of what's going wrong. The complete lack of bifidobacterium is especially shocking, as those do very beneficial things for the GI tract and beyond. In addition to helping with lactose tolerance, immune issues, and inflammation, it also acts as an anti-oxidant. Treatment might help in tolerating some of the foods I sorely miss.

3) Regarding antibiotics, yes, I do think it's a good idea. I'm positive for two bacterial infections. Borrelia is seronegative, but I'm positive for Borrelia outer surface proteins OSPA and/or OSPC and/or DBPA. OSPA and OSPC are expressed in response to different environmental triggers, and OSPC especially provokes a strong immune response, as well as protecting the borrelia from the immune system and impairing dendritic cells. DBPA indicates persistent infection. So even though it's a relatively mild reaction, it is a positive reaction, which is far more than should still be present 20+ years after exposure via dozens of tick bites, and it could be causing a lot of my symptoms and other abnormal lab results.

Yersinia is also an unequivocal positive for IgG, with a "strong intensity" reaction to outer protein YOPD and a low intensity reaction to YOPM. YOPD is evident in pore formation (attacking cells) and effector translocation (cell control). YOPM can inhibit the innate immune system response. I was never previously diagnosed with a Yersinia infection, but did have a bad episode of diarrhea and tummy pain in 2008 (like, lying on the floor waiting to die pain), followed by weeks of stomach pain any time I ate anything at all. People prone to high iron levels are especially susceptible, and I do typically have high-ish iron, probably due to being heterozygous for a gene which causes hemochromatosis. So again, that is something which should be gone, yet is showing a strong IgG reaction and even a couple weak IgA reactions.

4) In addition to the positive bacterial results, there are several results which also indicate immune activation: elevated soluble CD14 indicates monocyte/macrophage activation and can indicate Lyme, elevated IL-8 indicates an innate immune system response though an oxidant stress or inflammatory response is also possible, elevated perforin mRNA indicates increased NK cell activation, and low CD57 (I'm borderline) can be an indicator of Lyme. So while the Lyme itself isn't a "smoking gun" result, several of other immune markers support the likelihood of a borrelia infection causing problems - these sorts of results are especially helpful when looking at bacteria which are notorious for changing forms and taking active measures to disable and evade parts of the immune system.

5) The Lyme will be treated according to ILADS recommendations, using IV antibiotics, presumably until certain lab results improve. While that protocol is somewhat controversial, it is accepted by many medical doctors, and is extremely helpful for at least some patients. While I would be rather dubious about aggressive antibiotic treatment without any lab results indicating Lyme, in my case there are numerous indications of Lyme. I'm also severely disabled, and my condition has been slowly deteriorating over the past three years despite pacing, supplements, etc, so trying an indicated treatment seems like a much smarter option than letting things continue to decline or indefinitely remaining severely disabled.

 

[joshi81]

Hi @Valentijn ! i too had a LTT test at Infectolab and came back positive..a bit "more positive" than yours .. i attach the image in this message.
The thing i did not understand is: you resulted positive just fo 1 out of 3 parameters on LTT test , are you sure that it is considered positive? what was written as a comment? for me if you read there's written: "the results of LTT are an indication of an actual cellular activity against B.B."
What was on your comment on LTT lab?
I ask you because your LTT test seems to be a slight positive considering that 2 parameters are normal and just one is not so high (it is 2 as the maximum range, so not so high)
You had a diagnosis of LYME just on the basis of that LTT?
What was the score of your CD57?
Thank you

 

[Valentijn]

The thing i did not understand is: you resulted positive just fo 1 out of 3 parameters on LTT test , are you sure that it is considered positive? what was written as a comment? for me if you read there's written: "the results of LTT are an indication of an actual cellular activity against B.B."

"The results ... are an indication for a borderline/very weak actual cellular activity against Borrelia burgdorferi."

I ask you because your LTT test seems to be a slight positive considering that 2 parameters are normal and just one is not so high

2 is positive. Positive is positive. Congratulations on being more positive.

You had a diagnosis of LYME just on the basis of that LTT?

And other lab results, showing extremely screwed up immune function and inflammation, some of which are known to be associated with Borrelia.

What was the score of your CD57?

63, for a normal range of 60-360, as I already stated above. So at the very low end of normal.

 

[serg1942]

Hi Valentijn, congrats for your results! (yeap, our disease is all about finding things to treat, isn't it?). And thank you for explaining your results so in deep!

I was also recently tested for coinfections by KDM, and all of them came out negative. However my LTT test showed a clear B.B. Infection, and as in your case, immune markers were according to the infection.

I think it's very likely you have Lyme. When you happens to have several coinfections, some of them tend to hide from tests. The reasons is easy, for instance, the LTT meassures the IFN-gamma your T lymphocytes release when cultured in a petri dish (or wherever they do it) together with borrelia antigens. If your lymphocytes are dealing with other infections, 1. your whole immune system is going to be depressed, so less able to synthesize antibodies, or to mount an immune response releasing IFN-gamma and plenty of other intermediaries. And 2. your lymphocytes are focused on several infections, so the amount of them that have "learned" to combat the Borrelia will be lower than if you would only have Borrelia...

Please let us know about your progress. I wish you the best luck!
Sergio

 

[joshi81]

Thanls valentijn!!
@serg1942 you too are positive to lyme? you ran just the LTT test or also other?
hat were the results on your LTT?
Did you score your CD57? and what came back? i had CD57 tested few days ago maybe tomorrow i'll have the results and it would be another piece of the puzzle.
Are u alredy on abx serg? i wrote to ILADS and they gave me the name of a LLMD in zaragoza... you are from spain if you need i can give the name.

 

[serg1942]

Hi Joshi!, I just answered you by PM! I am going to paste here my response, as you ask me more or less the same, so I think it's better people can read it, ok?


Hi Joshi!

*** I'm sorry it took me so long to reply... I am inundated with the studies, and not feeling fine right now b/c of a terrible herx reaction from some herbs for Lyme (similar to those used by Cowden)..

*** As for your questions:

oh thanks sergio, did u run cd57 also? if yes what was the result?

***Yeap, it was quite low, and it's been going up slowly during the treatment with ABX. Now it's in the lower part of the normal range.

so your only positive test for borrelia was LTT?

*** Yes, but pretty clear, 8, 8 and 2. I was negative by Igenex years ago...


and did u find improvement on abx or this herbal formula? or they didn't change anything?

*** I did. I started them 1.5 years ago. After 1 months they put me in bed for 4 months. Then I felt better than ever (at a 70%). It lasted 2 months and then I kind of plateau at a 35% for the rest of the 11 months I was on the ABX. I stopped them last december, and decided to postpone the beginning of the the herbs, because they also put me in bed, and I had exams in January. So After 2.5 months, just after finishing exams, I started the herbs, that is, 3 weeks ago, and I am almost bedridden at the moment.

*** No doubt I am passing through another hard herx, but it is actually a good sign, at least in theory. What I cannot denny is that these 2.5 months I stayed off the treatment I went back to this great 70% I experience in the middle of my 11 months on the ABX regime: a level of functionally higher than that of before the ABX.

The tests results show I am still in the middle of defeating borrelia. So we'll see how "this affair" ends up...

Hope it helps!

Best!

Sergio

 

[atoska]

Hi Valentijn!
Thanks for sharing your results and explaining them so deeply!
I have also been diagnosed with lyme by KDM through Infectolabs. And I also had a positive Western blot through Igenex. Today I am going to start my third week of IV rocephine at Himmunitas.
When are you going to start treatment? What is your IV treatment plan? I would love to meet you there sometime!
I was also positive for Yersinia on my latest tests. IgG and IgA positive. KDM told me that we wouldn't treat it until I finished IV's. Are you going to treat it? How? It is weird to me to hear that I am positive for Yersinia cause I don't really identify with any of the symptoms. But it is interesting what you say about Yersinia inhibiting the inmune system and being related to high iron levels. I use to have high iron.
Thanks again for sharing!
I wish you all the luck in the world!
Andrea

 

[Valentijn]

When are you going to start treatment? What is your IV treatment plan? I would love to meet you there sometime!

Dr de Meirleir said that getting the IV antibiotics here in the Netherlands won't be any problem - and in fact should even be simpler than it is in Belgium. So I just need to go to Brussels for followup appointments and such. I should be starting the antibiotics in about 2 months.

I was also positive for Yersinia on my latest tests. IgG and IgA positive. KDM told me that we wouldn't treat it until I finished IV's. Are you going to treat it? How? It is weird to me to hear that I am positive for Yersinia cause I don't really identify with any of the symptoms. But it is interesting what you say about Yersinia inhibiting the inmune system and being related to high iron levels. I use to have high iron.

It sounds like Yersinia treatment uses a couple antibiotics typically, so I suppose it's possible that the Lyme treatment will wipe it out. We haven't specifically spoken about that one yet, so I don't know what Dr de Meirleir's plans are for it.

 

[Thinktank]

Your testresults and treatment plan look very much like mine so i'm really curious how you will do on treatment.
The only difference is my macrophage activity is really low, nagalase is elevated and having a bit higher inflammatory cytokine markers. Also my VEmax is only 20% or / 28l. / min. of the expected value.
Oxygen uptake is 51% or 1.062l of the expected value.

If i remember well you also use quite a few other supplements like yohimbe etc. Are you going to drop those and only use the supplements per KDM's recommendation or continue using the supplements you feel well on?

 

[Valentijn]

The only difference is my macrophage activity is really low, nagalase is elevated and having a bit higher inflammatory cytokine markers.

Yeah, I'm glad my nagalese is normal - I think that's why I don't need to do the GcMAF. But I do have a couple high cytokines ... IL-8 is nearly 50 times higher than the maximum normal range, and MCP1 is also quite a bit higher than it should be.

Also my VEmax is only 20% or / 28l. / min. of the expected value.

Do you mean VO2 max, or something else? And 28 L/min or 28 mL/(min x kg)? 28 L/min would be more like 1% of normal, and 28 mL/(min x kg) seems a lot more likely. It looks like the normal range for sedentary guys would be 35-40, so 28 would be about 20-30% below expected, rather than 20% of expected.

Oxygen uptake is 51% or 1.062l of the expected value.

My oxygen uptake isn't listed on the summary (or is that the same as maximal ventilation - 47%?), but it does state that my Respiratory Quotient was 1.23, so I had lot more CO2 coming out than O2 going in. Apparently getting it over 1 is an indication of reaching anaerobic energy use, and 1.1 is often used as a threshold to stop the stress test.

Basically at that level it shows that the patient is near exhaustion and their limits - hence I think it's one of the measures which the 2-day CPET ME/CFS researchers use to show that the patients are exerting maximal effort and not getting low results due to holding back. But I guess it getting so high would explain why I had to sit on the floor and gasp for breath for a while after the test, and that I signaled I was done with the higher intensity because it seemed like I couldn't breathe properly - I really did need more oxygen, and my cardio-respiratory system couldn't accommodate me.

Anyhow, it's a pretty fascinating area, and I want to look into exercise testing a bit more. I've downloaded a few text books on exercise testing, and it's been helpful in understanding my results so far. The main thing I'm interested in is how a very deconditioned (sedentary) patient would look different from an ME/CFS patient with apparently healthy heart and lungs, yet something else going wrong (mitochondrial, neurological, autonomic, etc). Basically it looks like deconditioned patients can get low results too, with maximal effort, though usually not this low I think.

If i remember well you also use quite a few other supplements like yohimbe etc. Are you going to drop those and only use the supplements per KDM's recommendation or continue using the supplements you feel well on?

He hasn't asked me to stop taking anything, so I'll keep on the basics which I find very helpful on a day to day basis: yohimbe, B12 (though might use less sublingual when the injections start), B vitamins, a different form of C, fish oil, and NAC. And magnesium as needed.

 

[joshi81]

hi @atoska i'm from rome too i sent you a message.
Anyway, i had this LTT test positive but today i recieved my CD57+ and .... they were very high 530!!!
What does it mean in your opinion? i was expecting a low score... instead it's very very high....
so confused...

 

[serg1942]

Joshi, Let me chime in here: That is good actually... your innate cellular response seems to be in a good shape, although you didn't know the level of activity. Anyway, your immune cells are able to multiple better than it is usual for many of us, so for me that's actually a very good prognosis regarding your potential recovery.

Sergio