Update and questions about testing

[nord]

A little update on the thread at:

http://www.rbfbb.org/view_topic.php?id=3781

About the study mentioned at

http://www.rheumatologynews.com/article/PIIS1541980009703928/fulltext

I found a thread on the cpnhelp forum about this study from when it was still in progress, and it mentioned that a patient of one of the Drs (Vasey) informed that the protocols are too limited for a complete eradictation of Cpn, and that Flagyl has been added since. Confirming then, that the results are already partially obsolete.  http://www.cpnhelp.org/multi_antibiotic_clinical

One can then hope that they have such a study under way.

About the Breakspear visit

“
Some samples were taken and it was agreed that I should try to get a MRI back in my country of residence (schedule didn't allow for it to be done there). The tests were negative (notably also HLA-B27) except for EBV and B. Burgdorferi (Lyme):

IMMUNOLOGY

Legionella Pneumophilia ab's Negative (titre of 1:64)



CHLAMYDIA C.F.T.             Negative



Epstein-Barr virus screen

EBNA IgG                     64 U/mL     (<5 is Negative)

EBV Early Ag ab. (IgG)       5 U/mL    (<10 is Negative)

EBV VCA ab. (IgM)            11 U/mL     (<20 is Negative)

Conment                      Results suggestive of past ( latent )

                             EBV infection.



Toxoplasma IgG abs    :      <3 IU/mL    7.2-8.8 Equivocal

Toxoplasma IgM ab     :      Negative

Comment               :      No evidence of Toxoplasma infection.





cytomegalovirus Ab (IgG)     <0.2    AU/m    (O.4-0.6 - Equivocal)

Cytomegalovi rus Ab(IgM)     Negative

Comment                      No evidence of CMV infection.





Enterovirus antibodies       Negative

Coxsackie virus A mix CFT    Negative

Coxsackie virus B mix CFT    Negative

ECHO virus N mix CFT         Negative

ECHO virus P mix CFT         Negative



B. Burgdorferi IgG           138 AU/mL     Positive = >15

B. Burgdorferi IgM           Negative

Comment                      Result suggests exposure to Barrelia

                             burgdorferi at some time. Advise

                             confirmation by Immunoblot assay.

                             Please indicate patient?s clinical

                             history and any antibiotics taken.





SPECIAL PATHOLOGY



Aspergilltis Precipitins

Aspergilliis Niger IgG        7.1 mg/L     0 - 24

Aspergillus Fumigatus IgG     11.8 mg/L    0 - 39

Aspergillus Versicolor IgG    10.3 mg/L    0 - 100



HLA B27



Result:



HLA-B27: NEGATIVE patient does NOT have the B27 locus.



Method:

HLA?B27 genotyping was performed using the Allset+ Gold SSP HLA-B27 Low Res kit supplied by Invitrogen.

Please note: This assay screens for B27 alleles B2701

to B2717, 2719 to 2721, 2724, 2725 2727, 2728, 2730 and

2732 to 2738. TF1 assay does not detect HLA?B2718,

B2723 and B2729 and may not detect HLA-52726 or 2731.

As I noted before, not having the HLA-B27 variety, seems to be more predictive of symptoms severity (and thus the course of the disease). One question is how widely known this is, as the established view is that it somehow (the mechanisms are not known) predicts the probability of a spondyloarthropathy, while in fact it is almost the opposite.

The GP (first appointment since the one hendling me “disappeared” into retirement witout notice) ordered an x-ray of my back. This showed nothing remarkable (except for a possible slight reduction of the L4-L5 distance). Some additional tests were ordered (ESR, RF, anti-CCP, IgA, B12, folate, ), but all neg/normal as expected (if I do have a problem in the area of rheumatology, I suspect a seronegative one, like chronic ReA, uSpA…).

I'd already been referred for bone marrow sampling to sort out leukopenia, and I had an appointment with a hematologist. The visit was somewhat promising, as he noted the skin rashes that I have on palms, that lymph nodes in the groins are slightly swollen, and generally put some weight to the big picture (rather than dismissing every symptom as “minor, nothing to bother about”), and was rather interested in any infection I'd experienced. A CT of my lungs and abdomen was normal. Some additional blood testing will be done one a monthly schedule, with a follow-up in August.

Now, I do have some questions that I do think this is the place to ask, although I do not have a diagnosis of rheumatic disease. The high antibodies for Lyme/B. Burgdorferi, as well as some of my symptoms do suggest chronic Lyme infection. On the other hand, the involvement of the Sacroiliac joints do suggest some other infection, it seems (and some or all the Chlamydiales have been mentioned as especially prone to taking up such residence 😐 ). Of course, a multiple infection is entirely possible. I have tried some dietary supplements, most importantly NAC to  test for C Pneumoniae (N-Acetyl Cysteine, rationale: “The NAC Test” at http://davidwheldon.co.uk/NAC.html), and vitamin D. I did get a clear reaction to vitamin D and possibly a weaker one to NAC (will do another test after letting any senesitive “visitors” multiply for a while)

Spotting as many potential pathogens prior to starting abx look like a good idea, as after starting abx, it will probably be more difficult. Especially as the “CAPs” (Cpn jargon for Combination Abx Protocol) for Cpn and Lyme are overlapping (but even more complicated for Cpn). So doing a Lyme protocol while having Cpn would possibly (probably?) lead to halting/eliminating some of the Cpn forms, while leaving the other (-s) intact.

My Hemoglobin has now recovered back to a normal of about 150g/L, and the WBC is normal of 3,900/uL. Only Lymphocytes are now a little low at 800/uL. Cobalamin of 280 pmol/L, where <250 is a "gray zone" according to the protocol (150-650 normal range). I have acquired most of the supplementation scheme from cpnhelp, and have taken some B12 sublinguals (not yet taken them consistently, though).

A telephone appointment with Dr D was scheduled for today, as according to the reception (they asked) he didn't think any further testing was necessary (surprisingly). However, today he then thought that immunoblot with Igenex was called for, and suggested that a testing kit was to be sent to me. However, he asked if I thought my GP would prescribe antibiotics, which I said is very unlikely, and he then suggested that I go back to England for testing and then an additional sample can be taken and sent to Germany, which I agreed to. After the telephone appointment, I am less sure that I did choose the best path. Perhaps I should have suggested getting the abx over the 'net (I suspect it is unlikely that a licensed physician would suggest that, and am not sure how it would be received), and just try to see if there is any reaction. Testing seems a bit of miss-hit-miss anyway.

Comments, ideas, and other input would be very appreciated.

[Maz]

[user=2031]nord[/user] wrote:

Now, I do have some questions that I do think this is the place to ask, although I do not have a diagnosis of rheumatic disease. The high antibodies for Lyme/B. Burgdorferi, as well as some of my symptoms do suggest chronic Lyme infection. On the other hand, the involvement of the Sacroiliac joints do suggest some other infection, it seems (and some or all the Chlamydiales have been mentioned as especially prone to taking up such residence 😐 ).

So doing a Lyme protocol while having Cpn would possibly (probably?) lead to halting/eliminating some of the Cpn forms, while leaving the other (-s) intact.

 

Hi Nord,

First, congrats on not having a confirmed rheumatic disease! 🙂

After reading your post and results…my fellow patient thoughts, as follows:

Not sure why sacroiliac involvement would indicate a different infection from Lyme? Lyme is a spirochete that can drill anywhere in the body…it can mimic, too look like, and trigger, anything under the sun.

As to the second point above…yes, targeting Lyme would likely also cover you for CPn. Should be noted, however, that the CPn protocols are often not enough for Lyme and it's hitch-hiking coinfection friends. In case you haven't seen Burrascano's Lyme Tx Guidelines, it's worth printing out a copy and having a good read to see how complex Lyme Tx can be:

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Also, you may like to read through Dr J's (well known LLMD in Washington) website, which is pretty comprehensive with some pics of palmar/plantar rashes.

http://www.jemsekspecialty.com/lyme_detail.php?sid=8

I don't see any tests for bartonella in Dr. D's work-up. With swollen glands in the groin and rashes, I think I'd be pushing for some testing of this bug…though fair to say that there are 26 strains of it that are known to date and testing for coinfections can be a bit iffy. Most LLMDs will, therefore, include some type of bartonella therapeutic probing with different abx (Rifampin, for instance, which is also included in the Sriram and Stratton protocols though usually for several months or one of the fluoroquinolones).

Hope something here helps, Nord!

Peace, Maz

[nord]

Hello Maz,

And thank you a lot for the help!

Hi Nord,

First, congrats on not having a confirmed rheumatic disease! 🙂

Thank you! But I do hope to get some kind of diagnosis and that it is ok to hang around until I know where my issues, ideas and questions belong! 🙂

After reading your post and results…my fellow patient thoughts, as follows:

Not sure why sacroiliac involvement would indicate a different infection from Lyme? Lyme is a spirochete that can drill anywhere in the body…it can mimic, too look like, and trigger, anything under the sun.

Yes, I've understood this ability of the Borrelias (which to some extent they seem to share with the chlamydiaes). It all seems to be a not very precise weighting of symptoms where one infection is more prone to cause some etc. My current working hypothesis is several tick-borne infections, plus Cpn, although this now moving towards the periphery. Fortunately, much of the treatment is the same, only needing an extra twist for additional suspects. 🙂

As to the second point above…yes, targeting Lyme would likely also cover you for CPn. Should be noted, however, that the CPn protocols are often not enough for Lyme and it's hitch-hiking coinfection friends. In case you haven't seen Burrascano's Lyme Tx Guidelines, it's worth printing out a copy and having a good read to see how complex Lyme Tx can be:

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Yes, I did read it, and Tx is obviously a challenge, and a bit difficult to get a good grasp of. I read some other papers, e g from Dr Garth Nicholson, who has some papers and presentations on chronic infections (including multiple with Lyme, Cpn Mycoplasmas etc). He points to other sources as well, but I haven't located them yet.

There are a few other questions about the ocntent in this paper that I'd be glad if someone could shed some light on. First it is often stated that starch is to be avoided, only to recommend vegetables (which I think contain a lot of starch). The starch content may be low in absolute terms, as many veggies contain a lot of water, but it really doesn't count (or then the proper recommendation would be reduce energy intake, which seem beneficial for some infections, but detrimental in some).

Also, aerobic exercise is adviced against, as is resistance training (what's then left for the recommended “aggressive rehab program”, I ask). I also can't find a rationale for this.

Also, you may like to read through Dr J's (well known LLMD in Washington) website, which is pretty comprehensive with some pics of palmar/plantar rashes.

http://www.jemsekspecialty.com/lyme_detail.php?sid=8

Thank you! I dont have any “nodules”, but the scaling, very similar to the example in the youtube video “Lyme disease in Europe”  at 5:10 http://www.youtube.com/watch?v=QxxpyGSZ4rU

I don't see any tests for bartonella

Thank you for pointing it out. I actually had the same thought after reading the paper by Dr Burrascano.

Hope something here helps, Nord!

Peace, Maz

It helps very much, and even parts that I've already covered are good to get confirmed by someone with a lot of knowledge and high ability to look for the bigger picture, thank you!

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