IGeneX Results

[JBB]

Hi guys,

Got my IGeneX results back TODAY. I am lucky enough to have them positive via PCR (no.4) - oh yay. Western Blot looks pretty positive too and IFA equivocal. Pretty emotional day tbh.

I have attached the results for @serg1942 for the Lyme poll.

Also I need to decide what treatment route I'm going to take. I would appreciate any input on this.

Is everyone here doing ABX with KDM?
ABX or combination of ABX and alternative?
Has anyone heard of a Dr O in the UK (any info on him, worth seeing?...he is not taking on new patients atm)? Any other possibilities?

Just trying to weigh up all the options.

Thank you lyme experts .


Best wishes,

JBB

 

[maryb]

Yes its a pretty shocking experience when you get a positive result.
I see you have 58kda +
this is from the Scottish tick from what I know.
I had the epitope test on 31kda as I wanted further verification, suppose I didn't really want to believe it, came back positive. If you've got positive PCR no need for further tests. You need to start treatment.
I've had help from Eurolyme yahoo group.
Lyme disease UK facebook.
as well as help on PR.

 

[JBB]

Thanks Maryb ,

Yes, I am pretty shell-shocked .

Ah band 58kda is from Scottish tick. I have been up there a few times so no surprise. I did see your results and found the German document you mentioned which says band 58kda is specific to Lyme.

Waiting for weeks on results is the worst. I'm glad I don't have to bother with doing an epitope test for band 31...that would be a pain in the bum.

Yes I need to have treatment ASAP. Only question is where / what. Thanks for passing on the info about other forums you've found helpful. There seem to be quite a load of Lyme forums from my research...that gives me a good place to start.


Many thanks,

JBB

 

[justy]

Hi JBB, sorry and glad for you all at the same time! I also felt very emotional when I got all my testing back. I am just starting long term oral antibiotics for Bartonella and Chlamydia Pneumoniae, but my Elispot LTT test for Lyme was negative - My doctor thinks I may still have Lyme and we are going to retest in November when I go to see him.

Not heard of Dr O - I have some info I will send you in a private message.

Hope you are holding up allright?

Justy x

 

[Daffodil]

my recommendation is KDM

 

[Esther12]

This might be deeply unwelcome, but I have concerns that some Igenex testing is leading to people being given false positives. Some of this was discussed in this thread here: http://forums.phoenixrising.me/index.php?threads/lyme-testing.25260/

Personally, I would try to be sceptical and cautious around claims made about Lyme from anyone vaguely 'alternative'. Mainstream medicine has not been great with Lyme either, but I think that this is another area where there are a lot of false claims being made and it is best to try to be as rigorous as possible before making decisions that could affect your health (and finances). If you could get the Lyme diagnosis double-checked by another doctor using a different lab, that could be a good idea.

 

[Ema]

JBB had a positive PCR test which means that pieces of the bacterial DNA were actually found. I don't know how much more definitive one needs to get than actually seeing the bacteria. Now whether or not it is the sole cause of the illness and symptoms, there is no way to know unless treatment is attempted.

False positive PCR tests are rare. It is much more common to get a false negative which is why PCR testing is often run in a series.

Good luck with your treatment, @JBB! I would also consider looking at your IgG levels (total and subclasses) since these are often found to be low in people with Lyme. Treatment with immunoglobulins (if warranted) along with abx often seems to make a big difference. I would also consider Transfer Factor along with abx.

 

[maryb]

As the epitope test on band 31kda has a 98% accuracy I'm fairly happy (wrong word) to believe I have Lyme.

 

[JBB]

@justy Thank you, yes it's a bombshell for sure but after 5 years of hell I think it's a step in the right direction.

@Daffodil Thanks. Is his normal protocol 3 months of IV ABX?

@Esther12 Thanks. Yes I did see that thread before doing my tests. I agree with Ema. In my opinion:
1. If it's good enough for KDM then it is good enough for me.
2. I have a couple of very specific Lyme symptoms having looked into it and history of a tick bite (also probably exposure to many others).
3. At IGeneX website "what tests to order" quotes 97% specificity. (IFA is about 80% specifcity, PCR is pretty unarguable). Either the lab is full of crap or they have done their homework. My opinion is the latter.
So I am about 99.9% sure of this result.

@Ema Thank you! Right look at IgG levels - treat with immunoglobulins. Trasfer Factor. I'll look into these and ask when I check out treatments.

 

[Daffodil]

JBB...this depends on all your testing. Maybe also on your symptoms and how long you have been sick. Some of his patients do not have access to IV

 

[JBB]

@Daffodil Thanks for the info Daffodil. Yes I see. That does make sense.

Taken me a while to reply as I have been doing research into all this when I have the energy. Thank you for all your replies. I really appreciate it. Probably have a load more questions soon.


Many thanks,

JBB

 

[serg1942]

Hi @JBB! Thank you very much for letting me know about your tests results! Yes, I am still compiling data, and have already done the excel file, so I will soon post the results. I am just taking the advantage of my last week left at Himmunitas in Brussels, in order to maybe get some more data from here, in person. (So far, with half of the cases inserted, the results are quite clear: most PWCFS have Lyme. But we knew this. It fits with many doctor's statistics. But actually I am finding some surprises when breaking down the data in to details!)

I cannot open the attached files though!!! I do appreciate the effort you've done uploading them... But cannot see them! Well, in anyway, you are positive by PCR and by WB, right? That is the only data I actually need.

Oh! and I'd need to know if you have been preciously diagnosed with ME/CFS. Have you?

Thank you!!!
Sergio

 

[roxie60]

I take abx and antifungals. Im back on azithromycin cause Minocycline did not appear to work and I declined again and thyroid got worse.

Sergio the WB was IND but I believe PCR was positive. The WB IgM was just one positive from being positive.

Im glad the poster has answers and can proceed with treatment. How long do you think you yave had lyme? I do think more test7ng is warranted for coinfections because if you have them can impact treatment for lyme. Good luck with your treatment, hopefully no long term damage.

 

[JBB]

Hi @JBB! Thank you very much for letting me know about your tests results! Yes, I am still compiling data, and have already done the excel file, so I will soon post the results. I am just taking the advantage of my last week left at Himmunitas in Brussels, in order to maybe get some more data from here, in person. (So far, with half of the cases inserted, the results are quite clear: most PWCFS have Lyme. But we knew this. It fits with many doctor's statistics. But actually I am finding some surprises when breaking down the data in to details!)

I cannot open the attached files though!!! I do appreciate the effort you've done uploading them... But cannot see them! Well, in anyway, you are positive by PCR and by WB, right? That is the only data I actually need.

Oh! and I'd need to know if you have been preciously diagnosed with ME/CFS. Have you?

Thank you!!!
Sergio

Really look forward to seeing your results Serg and very interested to hear what the surprises are!

I have been diagnosed with CFS 4 years prior to Lyme test. Ill for 5 years. I do not have an ME diagnosis because I have not seen a doc that distinguishes between ME / CFS. For what it's worth I have looked at the CCC and think I would fit them. I have crimson curls, OI...can't remember what other stuff was in there but I remember thinking that I would fit.

Serum PCR +ve.

WB:
IGG -ve: **31 IND, **39 IND, **41 ++
IGM IND: **31+, **34 IND, **39 IND, **41+, 45+, 58+

If I did the 31kda epitome test I imagine band 31 would give me a +ve western blot given that the PCR was +ve.

If you would like to see the attachments serg PM me and I can email you.

Wishing you all the best in your recovery at Himmunitas .

JBB

 

[serg1942]

Hi @JBB,

Thank you so much for your extra explanation!

Here's your data, translated and summarized in the thread of my forum where I am compiling all the cases:

http://www.sfc-em-investigacion.com/viewtopic.php?p=24721&f=24#p24721

Please, check for yourself the anonimity.

Actually I don't need to see the tests, cause only the fact of offering to show them to me, gives me assurance about the reliability of your data. I do apreciatte that. Actually, I have gotten half of the patient's data I have compiled, in person, and regarding the other half, either I have been in touch with the fellows who have given the data to me, for years now, or some other people I know have explained that they knew them well, etc. What I mean is that, even thogh the outcomes won't have any scientific value, I know they are real cases, so I know we can trust that data.

I will try to bring this survey to a Professor of my university to see if I may draw her attetion, and want to invert money in a proper observational study, that would actually shed data with scientific evidence. We'll see... It does't hurt to try!

Thank you for the good wishes, I do think I am getting better... I'll wait a few weeks to see if the improvement stays stable in time, and will let you all know.

I wish you the best of the luck to you too, with whichever treatment you choose!

Sergio

 

[JBB]

Fantastic work Serg. You are the next generation of ME docs. We need people like you to treat these horrible illnesses!!

Your study is very interesting and it would be fantastic if you could get some funding to do more. Push for it!

I wish you all the best in your recovery,

JBB

 

[JBB]

I take abx and antifungals. Im back on azithromycin cause Minocycline did not appear to work and I declined again and thyroid got worse.

Sergio the WB was IND but I believe PCR was positive. The WB IgM was just one positive from being positive.

Im glad the poster has answers and can proceed with treatment. How long do you think you yave had lyme? I do think more test7ng is warranted for coinfections because if you have them can impact treatment for lyme. Good luck with your treatment, hopefully no long term damage.

Thanks @roxie60 . Sorry for some reason I missed your post. Interesting to hear what you're doing.

I've probably had it for nearly 20 years. Symptomatic the last 5.

Yes I am looking into the best way of co infection testing at the moment - IGeneX / Infectolabs. IGeneX do FISH for Bart and Babs which they say are 100% sensitive (for one of them anyway). I don't know what to do about other co infections testing or if others are important. Would be very interested to hear any info on this. There is a long list of stuff you can test for at Infectolabs!

Best wishes,

JBB

 

[maryb]

@serg1942
I can't remember what it is you are doing Sergio Do you want Igenex test results?

 

[JBB]

Think Sergio is trying to get info on how many PWCFS/ME have Lyme @maryb . Not necessarily just IGeneX but I thought I'd put up my results .

 

[roxie60]

Thanks @roxie60 . Sorry for some reason I missed your post. Interesting to hear what you're doing.

I've probably had it for nearly 20 years. Symptomatic the last 5.

Yes I am looking into the best way of co infection testing at the moment - IGeneX / Infectolabs. IGeneX do FISH for Bart and Babs which they say are 100% sensitive (for one of them anyway). I don't know what to do about other co infections testing or if others are important. Would be very interested to hear any info on this. There is a long list of stuff you can test for at Infectolabs!

Best wishes,

JBB

My llmd had me test through MDL and they picked up a couple coinfections but did not flag borrellia, bart or babs. I really dont get why it is so hard for these labs to consistently test and get same results. Maddening to have one test say you are negative then next test say you are positive. No wonder at times we feel we are going crazy.

Crazy but tryin to keep it real!