My first appointment with KDM

[Drass]

Wrote an email to ArminLabs asking for my results and they answered me inmediately with this:

Analysis
Borrelia burgdorferi Elispot
Borrelia burgdorferi Fully Antigen .................. +18 ref range <2
Borrelia b. OSP-Mix (OSPA/OSPC/DbpA) ......... +14 ref range <2
Borrelia burgdorferi LFA-1 ............................ 1 ref range <2

The results of the EliSpot-Test are an indication for an actual cellular activity againts Borrelia burgdorferi.

That added to this:
sigA (Soluble Immunoglobuline A)
13 µg/ml rango normal 510/2040 µg/ml

Makes me believe that im pretty fucked up ...

I thought if something its so clear that the values are so high for borrelia and so low for the immunity in the gut i should have tested positive in other tests..

So im still waiting for the rest of tests, i guess on mid august i will get them. Himmunitas its closed till 8 of august so i should wait


Regards

 

[msf]

Hi Drass, at least you have a diagnosis now, and unlike those people who only have clinical diagnoses of Lyme, you can be fairly confident in yours.

Oh, and tests don't always correlate with how ill someone is, some people's immune systems are more able to withstand insult than others.

 

[Helen]

I thought if something its so clear that the values are so high for borrelia and so low for the immunity

Hi Drass, I get weekly,intramuscular gamma globulin injections beside the antibiotics a.o. . Maybe that will be an option for you too.

 

[sarah darwins]

Himmunitas its closed till 8 of august

It's actually 2 August. I know because I just tried to call them and there was a message saying "Himmunitas is closed until August 2nd."

 

[Drass]

It's actually 2 August. I know because I just tried to call them and there was a message saying "Himmunitas is closed until August 2nd."

Ur right

Adding a question: I have been reading about KDM and he said that close to the 80% of his patients recover almost completely, and mainly he is treating them with abx.
Then there is an study ongoing with Rituximab driven by other docs that also talks about such rates of remission, even having totally different aproach.

How can it be?
And also, whats the opinion of KDM about Rituximab, anybody asked him? is he using it with some patients or keep waiting till the results from Fluge and Mella's study?

 

[sarah darwins]

I have been reading about KDM and he said that close to the 80% of his patients recover almost completely, and mainly he is treating them with abx

Do you have a source for those statements? The closest I can find for the 80% figure is from Cort Johnson:

"One encouraging sign is the consistent improvement rates experienced physicians report they see in their patients. Dr. Lapp, Dr. Teitelbaum, Dr. Holtorf and Dr. De Meirlier report that 80% or more of their patients see ‘significant’ improvement." [source: http://www.cortjohnson.org/about-chronic-fatigue-syndrome-mecfs/prognosis/ ]

'Significant improvement' is a lot different to 'recover almost completely'.

And also, whats the opinion of KDM about Rituximab, anybody asked him? is he using it with some patients or keep waiting till the results from Fluge and Mella's study?

I believe his publicly stated position is that the trials are very interesting for what they reveal about the disease process but that Rituximab is unlikely to be an effective long-term treatment. Again, Cort Johnson's site has more detail on that: http://www.cortjohnson.org/blog/201...fatigue-syndrome-and-the-hope-for-the-future/

Note that both the Cort Johnson articles are (I think) from 2013 and things may have changed since then.

 

[Sushi]

I have been reading about KDM and he said that close to the 80% of his patients recover almost completely, and mainly he is treating them with abx.

That's a wee bit off from what he has actually said. He has said that (depending on age group and length of illness) as many as 80% are able to improve their functioning significantly. The group most able to do this are those who are young and at the beginning of their illness.

 

[Drass]

BabesFISH Babesia genus FISH .............Negative Negative
Bartonella Bartonella .............Negative Negative
CD57 CD57 Absolute count ---283.......... 60,00 - 360,00 cells/μl
D-Lact D-lactate--- 3,24 ..........0,00 - 1,66
HHV 6 Human Herpesvirus 6--- 0 ..........0,00 - 50,00
L-Lact L-lactate ---2,55....... 0,59 - 1,97
PGE2m Prostaglandine E2 ---18,20...... 0,17 - 6,45
sCD14 Soluble CD14 --- 3146....... 1430,00 - 2800,00
AERA Pseudomonas aeruginosa (lgA)--- 3,7 ......... 0,00 - 2,00
Pseudomonas putida (IgA) --- 2,2 ........ 0,00 - 2,00
Rickettsia conorii IF (IgG) --- 1/64 ......... Negative
IL-1betaS IL-1beta serum 23 0,00 - 3,00 pg/mL
IL-6S IL-6 serum ---29 ....... 0,00 - 5,00 pg/mL
IL-8S IL-8 serum ---7418 ...... 0,00 - 15,00 pg/mL
MCP1 MCP1 --- 932 ..... 0,00 - 165,00 pg/mL
SeroCHLAM pn Chlamydia pneumoniae Serology IgA gABorderline Negative

Yersinia Immunoblot Negative
Chlamydia immunoblot Negative


Flora in the Gut
Firmicutes/Bacteroidetes ratio LOW 4,64
Gram+ / Gram- ratio LOW 7,50
Diversity Index 3,82 ............. <4 LOW .... 4 to 5 NORMAL ... >5 HIGH

Hematology
Lymphocites +60 from 20-45
Segment -28 from 40 - 70

Vitamine D3 25-OH 17.6 ........ <20 LOW
1,25 DI0-OH Vitamine D 91 ...........HIGH


So i have been having a look to the results in the internet and seems to be related with inflamation of the body, but i cant understand everything properly.

Does anybody here know how to read all this?

Thanks

 

[Daffodil]

looks like you have inflammation and leaky gut.....

 

[snowathlete]

Hi Drass

I used to be a patient of KDM. I read on your post that you were previously diagnosed with IBD, so I just wanted to warn you that due to the antibiotics that KDM prescribed for me for suspected Borrelia and Bartonella I developed ulcerative colitis. Unfortunately, when these symptoms occured, he did not suggest stopping my treatment, as he should have, and that meant the condition worsened for a couple of months before I had a colonoscopy and my gastro specialist suggested i stop the abx. I stopped and immediately the ulcerative colitis improved. However, I still ahve ulcerative colitis two years on and may have it the rest of my life, which is not good. So just be aware that whereas some patients seem to improve with KDM on abx, some do not and some even get worse.

I do not regret seeing KDM but I do regret not stopping treatment when things started going badly. So I just suggest a little caution with treatment, as there are always risks, and as you specifically have a history of IBD I thought you should know about my particular case.

 

[sarah darwins]

@Drass - thanks for continuing to post your results. And thanks for the tip about emailing ArminLabs. When you said they responded "immediately", you meant it! I think it was about 90 seconds from me clicking "send" on their website to my results turning up in my inbox. I suspect only German labs can do this.

My results are very different to yours (borderline). As someone said, at least yours seem pretty clear cut.

@snowathlete - to say the least, that sucks. So sorry. But thank you for sticking around so that others can learn lessons. Is it specifically IBD (not IBS) that has a potential to evolve into ulcerative colitis, do you know? (not that I'm exactly clear on the difference, despite reading a lot about it)

 

[Drass]

But there is something in my results that doesnt fit.

I have the CD57 pretty high.. normaly ill people is having it much much lower, what do you think?

 

[sarah darwins]

But there is something in my results that doesnt fit.

I have the CD57 pretty high.. normaly ill people is having it much much lower, what do you think?

I don't understand that stuff well enough to offer an opinion. Perhaps someone who has had more testing done ...

 

[maryb]

My CD57 is high also, I have a positive Lyme result. Differences of opinion about this amongst doctors.

 

[Daffodil]

Hi Drass

I used to be a patient of KDM. I read on your post that you were previously diagnosed with IBD, so I just wanted to warn you that due to the antibiotics that KDM prescribed for me for suspected Borrelia and Bartonella I developed ulcerative colitis. Unfortunately, when these symptoms occured, he did not suggest stopping my treatment, as he should have, and that meant the condition worsened for a couple of months before I had a colonoscopy and my gastro specialist suggested i stop the abx. I stopped and immediately the ulcerative colitis improved. However, I still ahve ulcerative colitis two years on and may have it the rest of my life, which is not good. So just be aware that whereas some patients seem to improve with KDM on abx, some do not and some even get worse.

I do not regret seeing KDM but I do regret not stopping treatment when things started going badly. So I just suggest a little caution with treatment, as there are always risks, and as you specifically have a history of IBD I thought you should know about my particular case.

ugh God. i am sorry this happened to you. I have been quite worried about this lately too, since I have been reading people with history of abx use are much more likely to develop UC.

did you take probiotics with the abx? wonder if that even helps much. i cannot even tolerate most probiotics.

do you think you will try fecal transplants?

what a mess. how can we treat the disease if we can get UC??? what happens to all the people out there who are treating Lyme with long term abx? this is very upsetting.

to make it even more confusing, some people on message boards say lyme causes the colitis!

snow...are you on a special diet? if so, does it help?

 

[Daffodil]

But there is something in my results that doesnt fit.

I have the CD57 pretty high.. normaly ill people is having it much much lower, what do you think?

hi drass. most docs now say CD57 is not a good indicator of Lyme sickness.

 

[snowathlete]

@Drass - thanks for continuing to post your results. And thanks for the tip about emailing ArminLabs. When you said they responded "immediately", you meant it! I think it was about 90 seconds from me clicking "send" on their website to my results turning up in my inbox. I suspect only German labs can do this.

My results are very different to yours (borderline). As someone said, at least yours seem pretty clear cut.

@snowathlete - to say the least, that sucks. So sorry. But thank you for sticking around so that others can learn lessons. Is it specifically IBD (not IBS) that has a potential to evolve into ulcerative colitis, do you know? (not that I'm exactly clear on the difference, despite reading a lot about it)

Thanks, so far, although UC is not nice at all, I would much rather have it than ME/CFS. But having both really sucks.

IBS is irritable bowel syndrome.
IBD is inflammatory bowel disease. The two acronyms being similar leads to a lot of confusion. By far the most common IBDs are Crohn's disease (small bowel and sometimes large also), and ulcerative colitis (large only). In both cases you have tissue inflammation and damage in the intestines leading to bleeding and other problems, which you don't get with IBS. Whereas IBS is fairly common as a component of ME/CFS, IBD is not.
Hope that helps

 

[sarah darwins]

Hope that helps

It does. I think I had misread part of your earlier post, too. Bit clearer to me now, but I've been swotting a lot lately and I seem to have reached abbreviation/acronym saturation point. Total brain overload.

 

[snowathlete]

ugh God. i am sorry this happened to you. I have been quite worried about this lately too, since I have been reading people with history of abx use are much more likely to develop UC.

did you take probiotics with the abx? wonder if that even helps much. i cannot even tolerate most probiotics.

do you think you will try fecal transplants?

what a mess. how can we treat the disease if we can get UC??? what happens to all the people out there who are treating Lyme with long term abx? this is very upsetting.

to make it even more confusing, some people on message boards say lyme causes the colitis!

snow...are you on a special diet? if so, does it help?

Thanks Daffodil. Since getting UC I've researched it somewhat, and there is a lot of evidence that some people's UC is certainly caused by abx, and the obvious conclusion is that is because of the friendly bacteria dying off.

I did take the probiotics that KDM prescribed at the time. Not terribly strong, but better than nothing. I woudl strongly suggest anyone on abx take probiotics alongside. However, you can only get a couple of genera as probiotics or fermented food. The vast majority you cannot get, so your abx might kill off 300 genera of your gut flora, and all you are able to do is add 4 or 5 back in. You're still losing 295 of them. So just be aware of the symptoms of IBD, especially passing blood, and if necesary stop the abx rather than doing more damage. It's a real risk. But I also think it is important to also keep in mind that not everyone who takes abx for Lyme develops IBD.

I think fecal transplant is far more promising for IBD (and more promising for UC than Crohn's) than it is for ME/CFS. I would potentially do it, but I am not there yet.

I had some mild food intollerances before starting abx. While on abx I developed much more severe food intollerances. I was on a very strict diet until recently, but even now I have to be careful. If I ate the wrong thing then it made my UC and my ME/CFS worse. I guess that is either down to a more leaky gut now or not having important bacteria present, or both.

 

[snowathlete]

It does. I think I had misread part of your earlier post, too. Bit clearer to me now, but I've been swotting a lot lately and I seem to have reached abbreviation/acronym saturation point. Total brain overload.

TBO