In Belgium to see Dr de Meirleir

[serg1942]

Hola Andrea!

Are you doing IVs??? Are you staying in BXL? Or have you made magic and you are following it from Spain??? Please let me know... And also, what's the current KDM's opinion of IV's vs oral ABX for Lyme? He told me one and a half years ago that they were the same, only that the IVs worked faster, but that at the end, they reached the very same point of effectiveness...

And finally, how are you doing, overall???

Un abrazote grande desde tierras valencianas!
Sergio

 

[Thinktank]

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.

Yeah, that's a rule he goes by i guess, normal nagalase, no gcMAF? Did he test your macrophage activity? (PHAGOTEST).

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.

KDM wrote VEmax (ventilation max???), maybe he means VO2 max, i have no knowledge about this kind of testing so i'll have to do some homework on it. KDM told me the 20% was very low.
I received the report in Dutch but will try to translate it later into English. Here it is:

Inspanningsonderzoek
ECG: Sinusaal ritme 74/min; PQ: 0,16 sec.
Onvolledige RBTB

Een inspanningsonderzoek werd uitgevoerd met volgende resultaten:
Een inspanningsproef met progressief toenemende belasting io een elektrisch geremde ergometerfiets werd opgelegd. Er werd aangevat bij 40 watt en elke minuut werd de weerstand verhoogd met 20 watt tot uitputting. De rusthartfrequentie bedroeg 94/min. Deze liep op tot 163/min bij maximale inspanning (=96% van de theoretisch maximale hartfrequentie). Uitputting werd bereikt bij 140 watt.
De bloeddruk van 106/78 mmHg in rust liep op 137/- mmHg bij 100 watt.
Het inspanningselectrocardiogram toonde ons een regelmatig en sinusaal ritme. Er traden geen ritme- noch geleidingsstoornissen op.
De maximale zuurstofopname bedroeg 1,062 l.min -1 (=51% van de voorspelde waarde). Dit komt overeen met 20,0 ml.min -1kg - 1. Het respiratoir quotient van 1,0 werd bereikt bij 100 watt en bij een hartfrequentie van 148/min. Bij uitputting bedroeg het RQ 1,16.
De maximale ventilatie bedroeg 28 l/min of 20% van de verwachte waarde.
Er was geen desaturatie van het hemoglobine. De dyspnoe is een gevolg van respiratoire spierzwakte (Zeer lage VEmax). Dit is een gevolg van de onderliggende aandoening.

Longfunctie
Spirometry
IVC 4,18
IRV 2,30
ERV 1,55
VT 0,86

Flow/Volume
FVCex = 4,70 (pred. 4,89)
FEV1 = 4,01 (pred. 4,12)
FEV1/VCIN = 96 (pred. 82)
MIF25 = 4,08
MIF50 = 4,66
MIF75 = 5,05
MEF75-85 = 6,51
PEF = 7,56 (pred. 9,56)
PIF = 5,17
AREAex = 19,50 (pred. 18,08)

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.

I guess you received the report in English? Maybe different terms, same meaning? I'll try to translate my report into English for a better understanding.

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.

It sounds like the test really took the life out of you, but you also have POTS right? I felt dizzy for a while after the test and had some PEM the next two days. My quadriceps felt like being bitten by thousands of fireants just after a few minutes of exercise. Did you feel any burning?

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.

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.[/quote]

 

[Valentijn]

Yeah, that's a rule he goes by i guess, normal nagalase, no gcMAF? Did he test your macrophage activity? (PHAGOTEST).

Nope, it wasn't tested - just white cells in general, which showed normal amounts of them.

The text from the Exercise Testing Summary is very helpful! The same format/form is used, which is great. It looks like your "Onvelledige RBTB" is "Incomplete right bundle branch block", which sounds like a bit of a heart defect, albeit milder than a complete block? Here's mine (though I'm using decimal points instead of his commas):

ECG: sinus rhythym 71/min; PQ: 0.15 sec; U+T wave.

This patient was subjected to an exercise test on the bicycle ergometer with progressive increasing resistance.

We started with 40 Watt and each minute the load was increased with 20 Watt until exhaustion. Heart at rest (91/min) increased to 168/min (= 101% of the theoretical maximal heart rate) at exhaustion. The maximal exercise capacity was 140 Watt.

The blood pressure of 137/98 mmHg in rest increased to 222/- mmHg at 140 Watt.

The ECG during the effort test was normal.

The VO2max (maximale zuurstofopname) was 1,422 L/min (=52% of the expected value) or 11.9 mL/(min x kg).

The anaerobic threshold (respiratoir quotient) 1.0 is reached at 80 Watt and a heart rate of 130/min. At exhaustion, the RQ was 1.23.

The maximal ventilation (maximale ventilatie) was 54 L/min or 47% of the expected value.

There was no desaturation of the hemoglobin.

Her exercise capacity is very low (class IV of the A.M.A scale of disability).

Interesting that our blood pressure was taking at different times: yours at 100 watts and mine at 140. Maybe because the cuff was a little small for me and trying to over-inflate (automatic ones do that to me all the time, due to my pulse being too weak to detect regularly), hence popping off at various times.

Our VO2max % of expected is basically identical - your actual value is so much higher 'cause your a guy And your anaerobic threshold came at less Watts but at a higher heart rate - no idea what that might signify.

Is maximal ventilation the same as maximal voluntary ventilation? It looks like maximal ventilation can be abbreviated as "VE". Ahh, according to http://en.wikipedia.org/wiki/Ventilation_(physiology) VE is the total volume of gas entering the lungs per minute. So maybe it's the maximum VE from during the stress test.

I've added mine in red:

Longfunctie
Spirometry
IVC 4,18 4.12
IRV 2,30 2.18
ERV 1,55 0.44
VT 0,86 1.50 (0.5 is normal for Tidal Volume)

Flow/Volume
FVCex = 4,70 (pred. 4,89) 3.87 (pred. 3.59)
FEV1 = 4,01 (pred. 4,12) 3.30 (pred. 3.12)
FEV1/VCIN = 96 (pred. 82) 80 (pred. 82)
MIF25 = 4,08 3.39
MIF50 = 4,66 3.53
MIF75 = 5,05 3.42
MEF75-85 = 6,51 4.60
PEF = 7,56 (pred. 9,56) 4.89 (pred. 7.05)
PIF = 5,17 3.64
AREAex = 19,50 (pred. 18,08) 12.01 (pred. 10.72)

It sounds like the test really took the life out of you, but you also have POTS right? I felt dizzy for a while after the test and had some PEM the next two days. My quadriceps felt like being bitten by thousands of fireants just after a few minutes of exercise. Did you feel any burning?

My pulse pressure gets pretty narrow, resulting in high heart rate, especially if I try something silly like sitting with my feet down for a while or standing up. I made it to the chair after the test, but still couldn't catch my breath, so sat on the floor and panted for about 5 minutes before I could get up. The muscle of my right thumb, which had been wrapped around the handle bar in a death grip started twitching immediately, and took about a week to stop. I never got any leg pain, nor an intense crash, but rather a milder and more prolonged crash.

 

[Valentijn]

I had an appointment with my GP today, to give her a copy of the results and let her know what's going on with regards to treatment. I think she was pretty skeptical (albeit polite) due to some of the Lyme tests being negative, and thought getting the IV antibiotics here also would be problematic. I'm not sure why, since I'll have a prescription from a licensed MD in the E.U.

We also asked her about how I can get a wheelchair from the city government, and she told us there's a form on their website which has to be filled out, then a review with a neutral doctor.

 

[maryb]

@Valentijn
can you tell me what an AMA score is? just looking at my exercise test and stuff.......

 

[atoska]

Hola Sergio! @serg1942 !
I am living in brussels! I didn't do the magic to be able to do it in Spain! hehe.. but I think that if I ever have to do this again, I would be able to find someone willing to help me in Spain
I am meeting a lot of people that are doing it this way... in their countries... but of course.. none are from Spain!

I got here at the beginning of February and today was the beginning of my third week on rocephine.
I am suppose to do 6 weeks of rocephine and then 6 weeks of azitro, so I will be done by the end of April.

I think KDM believes that IV's are faster and better for some of his patients. I know of two other spanish patients that are about to start with IV also. Maybe he has recently started treating more people with IV. I do remember when you suggested to him to start IV treatment and he said better not to.

Most of the people that I have met at the IV room are from close by though... they all speak flamish.

I am feeling more or less the same as always. Oral antibiotics were like candy to me. I maybe only felt a little more brain fog, but nothing major. Now on Rocephine I really feel something is going on in my brain, I am really tired and foggy, and I forget things. But it is a different kind of tiredness as the one from the illness...
My pains and physical fatigue haven't changed at all.

After 7 months on oral abx and not seeing any kind of difference I started doubting the lyme diagnosis and sent my blood to Igenex to be sure. I received the results and was IGM positive for the CDC and for Igenex, so I recovered some strength to keep fighting!

Life in brussels is pretty cool! I found a nice little house with a garden and the weather is great!

I hope that when you come for your next app in March we can see each other again!

Besotes desde tierras belgas!

 

[Valentijn]

@Valentijn
can you tell me what an AMA score is? just looking at my exercise test and stuff.......

In various documentation the American Medical Association has ratings for disability severity resulting from pulmonary or cardiac issues. My result would be in the category IV range, out of 4 or 5 max, and be considered "severe" disability.

 

[maryb]

@Valentijn
thanks

 

[Valentijn]

I had assumed that this wasn't important, but maybe it is somewhat:

ECG: sinus rhythym 71/min; PQ: 0.15 sec; U+T wave.

Basically a T-wave is an upward bump coming after the main heartbeat, followed by the U bump. A U-wave is typically small and can be difficult to detect - it might not be detected at all when there's a faster heart rate (65+?). "U+T wave" might signify a TU-fusion, where there's no real boundary between the two bumps, which is determined by the bump being longer than it should and basically occupying the space expected for both the T and the U.

It sounds like TU fusion can be the result of hypokalemia.

 

[WNM]

Hi Valentijn,

Bizarrely I also saw KDM on the 28th Oct, so I probably saw you there in the clinic. I had similar tests done as you, although unfortunately I haven't had the full results and report back yet. I did however have a brief phone appointment with KDM (I'm from the UK) where he told me some results and his thinking.

I have some similar results to you like very high IL-8, also raised PGE2, MCP-1, sCD14 and perforin. No change to nagalase. Normal fructose and lactose absorption. In contrast to you I have exceptionally low CD4 lymphocytes like in AIDS. However I am negative for HIV (and all other STDs), so I essentially have idiopathic lymphocytopenia (aka. non-HIV AIDS). I also have low B cells, NK cells and neutrophils (neutropenia). He didn't have my stool test back yet; and I don't know about my exercise results yet.

KDM suspects an intracellular pathogen, most likely borrellia (Lyme). However all my borrellia and pathogen results were negative. I also have no history of tick bite. Hence I'm interested in your diagnosis and progress since it looks like I will be prescribed similar. I may start a thread when I get my results back.

Will

 

[WNM]

Valentijn,

Do you have a lot of sickness behaviour and brain symptoms? Many immune signaling molecules can induce these symptoms including IL-8 and PGE2. Our exceptionally raised IL-8 might be particularly important, at least from a peripheral immune point of view.

http://www.sciencedirect.com/science/article/pii/S0889159110000383

In my case raised IL-8 also seems consistent with neutropenia, since it is likely pulling neutrophils from blood into tissue. But you don't have low neutrophils?

 

[Valentijn]

Bizarrely I also saw KDM on the 28th Oct, so I probably saw you there in the clinic. I had similar tests done as you, although unfortunately I haven't had the full results and report back yet.

Hah, too funny I was the blonde woman sitting on the floor, usually with a laptop.

KDM suspects an intracellular pathogen, most likely borrellia (Lyme). However all my borrellia and pathogen results were negative. I also have no history of tick bite. Hence I'm interested in your diagnosis and progress since it looks like I will be prescribed similar. I may start a thread when I get my results back.

I'll make regular updates about my progress. I might start a separate thread soon, so I can document my current condition and how things progress.

Do you have a lot of sickness behaviour and brain symptoms? Many immune signaling molecules can induce these symptoms including IL-8 and PGE2. Our exceptionally raised IL-8 might be particularly important, at least from a peripheral immune point of view.

I don't have much sickness behavior: no lethargy, or depression, or anxiety, or loss of appetite, or sleepiness. Increased pain sensitivity when crashing or extra-swollen. No reduction in grooming, aside from less frequent showers due to the exertion required. My main issues are OI and a very low threshold for triggering PEM. Cognition can be very problematic when OI or PEM limits are exceeded.

In my case raised IL-8 also seems consistent with neutropenia, since it is likely pulling neutrophils from blood into tissue. But you don't have low neutrophils?

My neutrophils are completely normal: right in the middle of the reference range.

 

[SOC]

I don't have much sickness behavior: no lethargy, or depression, or anxiety, or loss of appetite, or sleepiness. Increased pain sensitivity when crashing or extra-swollen. No reduction in grooming, aside from less frequent showers due to the exertion required. My main issues are OI and a very low threshold for triggering PEM. Cognition can be very problematic when OI or PEM limits are exceeded.

Sounds exactly like me. If you ever figure out the OI and very low PEM threshold with associated cognition problems, be sure to let me know.

 

[serg1942]

Andrea!!! I almost miss your message!

Wow!, You really like weird candy! You know what, this is gonna be my first question to KDM, b/c I'd like to know what are the changes for a therapy with gammaglobulines (I have IgG and IgM of them low!), and maybe I could kill two birds with one stone... (Well, we'll see, not sure GGs are easy to give in BXL...). Anyway, I could spend the summer in BXL doing IV, before starting my next year in the university... I'd have 2 months off...

Would you mind to describe how the IV is done? I mean, the catheter they have to leave you in, where do they place it, how often do you have to change it, the safety measures you need to take while carrying it, etc.?

Also, I'd like to know exactly how much everything is costing... Because this is a very personal thing for you and also I don't think it is very appropriate to post the prices online, could you PM me when you have time?? (Before mach the 27th pleasssse!!!!).

Of course! I'd love to see you again! We won't have much time to hang out though, but better than nothing... Anyhow, you know Valencia won't go anyway!

Un abrazote muy grande, y mucha suerte!!!!
Sergio

 

[Valentijn]

I'll be blogging about my experiences during treatment using the PR blogs. If interested, you can either go to http://forums.phoenixrising.me/index.php?members/valentijn.3723/ and click on the "blogs" tab, or look for my entries at http://forums.phoenixrising.me/index.php?blogs/

 

[Mary Booth]

Which gene does yohimbe suppress?

Have you sent infectolabs an email? I bet your borrelia elispot results are ready by now.
I also received most of the results from lab. medische ontledingen after a week, except cytokine subpanels 1&2 which have been sent to himmunitas.

 

[Valentijn]

I went back for my followup appointment yesterday, again just driving down for the afternoon. Traffic is surprisingly good driving back to the Netherlands during rush hour! 2 hours driving down, 2.5 driving back.

We had a 2 hour wait once we got to the clinic. Dr de Meirleir had a woman from Australia who was there to watch and learn. Things were probably going slow due to giving explanations to her, especially since most of the appointments are in Dutch. She followed us to talk to the nurse, since we'd be doing it in English which she could understand! Her name was Ms. Wells, from Adelaide. I don't remember her first name, and no idea if she's a doc, intern, student, etc.

Anyhow I filled out a followup form before going in, indicating changes in symptoms, problems, and requested prescriptions. He wasn't bothered that I hadn't been able to take the liposomal C or mushroom extract - I think he's used to ME/CFS patients' intolerances

The 4ME, B12, probiotics, and digestive enzymes will continue to be prescribed for a while. When Wells asked, he explained that the 4ME helps with TH1/TH2 imbalance, and that the 4ME continues during the antibiotics because the antibiotics makes that imbalance worse.

The only things I marked as doing better with were GI symptoms and cognitive function. He didn't expect any real improvement yet, because this is the preparatory support phase, and the actual treatment hasn't started yet.

The plan is to do 6 weeks of 2g IV Rocephin (Ceftriaxone), 4 days on then 3 days off, for 6 weeks. Then I switch to 500mg IV azithromycin, 3 days on then 4 days off, also for 6 weeks. The prescriptions for the IV stuff and the new prescriptions for the stuff I've already been taking should arrive in the mail shortly.

We then went to talk to nurse Jan about setting things up, and more blood was drawn for 3 additional tests. Basically testing for additional Lyme co-infections known to be transmitted by ticks, since I came up positive for Lyme and co-infections are a definite possibility. The new tests are Anaplasma Phagocytophilium, Babesia, and Tularemia.

He then explained to us how to set up the IV antibiotics. One option is to do it at Dr de Meirleir's clinic, but that's not feasible for me. Another option is through my GP's office, but my GP probably wouldn't like that, and it would be difficult for my fiance to take me there for the infusions, especially since the azithromycin infusions should take about 3 hours each.

So we're going to try option #3, which is having a nurse from a local organization come to our house to do the infusions. Though the first infusion will be at Dr de Meirleir's clinic, after we get the home care arranged. Basically we'll get a prescription for the antibiotics, the bags, the lines, and the needles. The home care organization will need to send a form directly to the clinic, to get authorization from the doctor.

My fiance is in the process of contacting our insurance, house care people, and the local disability services. Basically it looks like the insurance should cover all of the antibiotics and associated paraphernalia. They should be emailing us with more specific information soon. And the house care should be cheapest through the disability services. So we'll see how all of that goes

 

[Sushi]

@Valentijn

Congratulations! This all sounds good and great that you can get a home care service to administer the IVs.

It is also good that he is training people. He had a doctor from the States there recently too, getting training.

Yes, he is quite used to us not being able to handle things as prescribed and has always been good with me about working out alternatives. When will you get your first infusion?

Sushi

 

[Valentijn]

When will you get your first infusion?

As soon as possible ... we need to set it up with a home care organization.

 

[maryb]

@Valentijn
I was thinking about you yesterday and wondering how you'd got on with your appt.
So good you can get IV's at home, 3 months is a long time to be away from home for those who can't.
We'll all be keeping our fingers crossed for you that all goes well.