Lyme conference Dr H. Dr B. etc - a must read

[heapsreal]

also @maryb and @heapsreal, the fact that you both and many other's here feel much better after ABX says something.

Testing here in australia from what i have heard is dodgy at best and then to send it overseas just greatly adds to the cost of testing, which isnt 100%.

I feel better on abx, some i herx on and years ago herxed badly on doxy but felt better after herxing was over. I had a strange rash on my back for years which cleared up with abx.

A light bulb went off when reading about babesia. I always wonder why cmv virus keeps reactivating, whats keeping my immune system down, is it just a whacky immune system or is it some other bacterial infection.

If one goes off a clinical diagnosis for lyme then i fit that criteria as well as cfs/me. I think if we dont have access to good testing, then a therapeutic trial of abx could be a good indicator. I have had a few of these trials i guess, mostly to treat sinusitis which is ongoing and wonder if this is some type of lyme bacteria causing it. Again babesia symptoms can look alot like frontal sinusitis which i have been dealing with for a long time. Plus head sweats which i have had for years is another babesia sign??

So i guess try and treat it and see what happens?

 

[minkeygirl]

I think it's the same thing with antivirals. We take them to see if we feel better. So much of what we do is trial and error. Throw everything at it and see what sticks.

 

[JBB]

@heapsreal if you have sore shins, sore foot soles this is indicative of Bartonella I believe.

You can do IGeneX tests from Oz which would probably be a good starting point. Also it might be worth looking into Advanced Lab for Borrelia. Fry labs does a PCR test for Babesia species which is 79.3% sensitive - I think this is the best around for Babs.

Just some info for you .

 

[heapsreal]

@heapsreal if you have sore shins, sore foot soles this is indicative of Bartonella I believe.

You can do IGeneX tests from Oz which would probably be a good starting point. Also it might be worth looking into Advanced Lab for Borrelia. Fry labs does a PCR test for Babesia species which is 79.3% sensitive - I think this is the best around for Babs.

Just some info for you .

Do you know the costs of those tests?

Also im on abx and struggle to function off them(also antivirals). I have heard one needs to be off abx for atleast 3 weeks but then i heard some test neg before starting abx and positive afterwards as abx can in some way help produce antibodies from the immune system??

cheers!!

 

[justy]

Can you look in a mirror and describe your shoulders/clavicles for me?

No idea Vic how to go about describing my shoulders or clavicles - they just look perfectly ordinary to me.

 

[JBB]

Do you know the costs of those tests?

IGeneX Lyme panel is $260 USD which is the Western Blot and IFA. The PCR is at best only 30% sensitive so probably not worth the extra $200. If you are more ill the PCR is likely to be more +ve. Many people in Oz are being diagnosed with Lyme, there are facebook groups there who may be able to give you more details about testing and insurance cover. IGeneX full panel ($460) has an 80% sensitivity. I'm not sure if this includes the IFA though which is a lot less specific. What you have to bear in mind is that it is a clinical diagnosis so tests are supportive. If you get a lab positive that's great ofc. I think what I might do is look into Advanced Lab (93% sensitive and a culture test) as well. It's not clear to me whether they are completely validated as they have not been going as long as IGeneX but Horowitz does mention them in the autoimmune summit Q and A which Justy (I think?) linked in another thread.

Yes you do have to be off ABX normally. Would have to check with IGeneX but from memory it's something like 2 weeks. It also depends on the lab used. I think normally you do ABX then come off them briefly to test again but obviously would have to ask your doc the best method to test.

 

[heapsreal]

IGeneX Lyme panel is $260 USD which is the Western Blot and IFA. The PCR is at best only 30% sensitive so probably not worth the extra $200. If you are more ill the PCR is likely to be more +ve. Many people in Oz are being diagnosed with Lyme, there are facebook groups there who may be able to give you more details about testing and insurance cover. IGeneX full panel ($460) has an 80% sensitivity. I'm not sure if this includes the IFA though which is a lot less specific. What you have to bear in mind is that it is a clinical diagnosis so tests are supportive. If you get a lab positive that's great ofc. I think what I might do is look into Advanced Lab (93% sensitive and a culture test) as well. It's not clear to me whether they are completely validated as they have not been going as long as IGeneX but Horowitz does mention them in the autoimmune summit Q and A which Justy (I think?) linked in another thread.

Yes you do have to be off ABX normally. Would have to check with IGeneX but from memory it's something like 2 weeks. It also depends on the lab used. I think normally you do ABX then come off them briefly to test again but obviously would have to ask your doc the best method to test.

Thanks im going to bring this up with my doctor.

http://www.australianbiologics.com.au/ This is the place that tests lyme in australia but from what i have read i cant see any testing for co infections like babesia. But seems most aussies are still sending tests overseas. From memory the australian lab is more expensive for the tests and not as reliable. But i believe it is not cheap to send blood overseas for testing. Hopefully my doc knows abit more about some of this too.

cheers!!

 

[Art Vandelay]

Thanks im going to bring this up with my doctor.

http://www.australianbiologics.com.au/ This is the place that tests lyme in australia but from what i have read i cant see any testing for co infections like babesia. But seems most aussies are still sending tests overseas. From memory the australian lab is more expensive for the tests and not as reliable. But i believe it is not cheap to send blood overseas for testing. Hopefully my doc knows abit more about some of this too.

cheers!!

The Lyme Disease Association has some good info on getting tested for Lyme in Australia on their website:
http://www.lymedisease.org.au/about-lyme-disease/diagnosis/
I also found them pretty helpful when I emailed them some questions.

Australian Biologics testing did seem very expensive and unreliable, so I ended up just getting a basic Lyme test from Igenex done (US$260 with freight via FedEx at around A$110).

 

[heapsreal]

The Lyme Disease Association has some good info on getting tested for Lyme in Australia on their website:
http://www.lymedisease.org.au/about-lyme-disease/diagnosis/
I also found them pretty helpful when I emailed them some questions.

Australian Biologics testing did seem very expensive and unreliable, so I ended up just getting a basic Lyme test from Igenex done (US$260 with freight via FedEx at around A$110).

thanks for replying.
can your share results?
Is there a certain time frame it has to be couriered by?

 

[Art Vandelay]

thanks for replying.
can your share results?
Is there a certain time frame it has to be couriered by?

My test results weren't definitive unfortunately. According to my doc's interpretation: "ELISA was equivocal positive. IgM western blot was positive because you have Borrelia specific bands that are positive but your IgG Western blot is negative". My hypothesis is that my ME/CFS is caused by bacterial infection so the result was useful in convincing my doc to support my preferred treatment program.

The blood has to be drawn and sent on a Monday so that it can get to the US before the end of the week. From memory, mine took a few days to get there. The Lyme Disease Association has a factsheet on how to arrange it all and the various requirements: http://www.lymedisease.org.au/wp-co...IGeneXAustralianTestingProceedure20130604.pdf

Igenex pricelist: http://www.lymedisease.org.au/wp-content/uploads/2013/04/Igenex-Prices-Australia.pdf

If you're on Facebook, it might be worth checking with the Lyme group because someone mentioned that the bad weather in the US has meant that there's a possibility that some FedEx deliveries might be delayed: https://www.facebook.com/groups/LymeAustraliaandFriends/

 

[DataDude]

Hi MaryB, hope all is well -- you noted symptom remission after a month on Rocephin IV. I have been diagnosed with Lyme and suggested that I try Rocephin IV, but I have not seen many positive experiences on it and I'm wondering what your symptoms were like before, during and after Rocephin and why you stopped? Were the improvements permanent?

Thanks for any insight you can offer!

Why are we bothering to have this 'conversation'??!! We all know it exists and the evidence is there from respected researchers and doctors, that's all that counts.

I know now I have chronic Lyme undiagnosed for 9yrs....dianosis of ME/CFS until then. History of outside work, dogs, horses, sheep, farming auctions etc. But I don't really blame my NHS doctors for that, I didn't have a EM rash that I can remember, but lots of bites and lumps, rashes in general that I wouldn't bother about at the time.

My symptoms include - Bells Palsy, inability to read books, magazines, newsapers fleetingly if I skim the page and only then on a good day. (I have a BSc & MA)
unable to focus visually on moving objects, feel like I'm going to have a seizure
constant head pressure, joint/back pain , vertigo, dizziness, MCS, heart issues, fatigue, food intolerances.
Those are just some of my symptoms. Many disappeared after a month on IV Rocephin, oh wait probably just a placebo effect. Why do these people bother, haven't they got something better to do, like annoy some other group, preferably of well people.

 

[msf]

Hi Art, from what you´ve said your results sound like a positive, even by CDC standards (they changed their guidelines a few years ago).

I just looked at the CDC´s website again, and I was slightly concerned that in the bit about the PTLDS they used the analogy of Chlamydia resulting in Reiter´s disease after the infection has been cured. This is the old view, but the reviews of the etiology of Reiter´s disease that I have read recently suggest that the persistence of the organism is likely to be the causative factor, and indeed Chlamydial Reactive Arthritis is now routinely treated with a course of antibiotics.

If the CDC is going to adopt a controversial position on Lyme, they might want to use analogies that actually make their position seem less controversial.

http://www.cdc.gov/lyme/postlds/index.html

 

[sianrecovery]

Hey Heaps - I heard that Fry Labs weren't reliable for babs anymore - I did Ingenx for co-infections - got babs Duncani and microti - like and admire their FISH techniques very much.

Did Pharamsan for borrelia, also positive.

Re sinuses - did a swab test for bacterial and one for fungal pathogens - both highly positive - can find tests and post if you want - going to start on the BEGi nasal spray - mix of abx and anti-fungals. Will let you know how I get on.

Vic - I tested for these infections after years of ME like many others on this thread. Because my symptoms reliably improved with certain antibiotics. Treatment may or may not work, but trying it is a logical next move. The Lyme world has many charlatans and would be shamans, Horowitz is not one of them. As you have posted no significant evidence to back your opinion, merely asserted your scepticism, which of course you have a right to do, I would suggest that your point is made, and you don't need to keep repeating yourself. Because you're kind of....not helping. PR seems to only grudgingly accept the presence of Lymies. But we are here because we were PEME first. But it is undermining to keep experiencing the same unfounded 'this is bullshit' stuff.

 

[NK17]

One example if you wish Vic of docs supporting Chronic Lyme : in France, prof Perrone - chef department of infectious diseases in University Hospital of Garches (WestParis), and member of Pasteur institute. No Quack,but a very serious man devoted to alleviate his patients burden.
And he is not the only one...

Just wanted to thank you @Hanna for posting in this thread about Prof. Christian Perronne. I'm fluent in French and from what I'm finding about him and by him, he is indeed a very serious doctor/researcher/clinician. There is a magnificent and very exhaustive presentation given by Prof. Perronne in 2014 (slides are mainly in French) which is an absolute eye-opener, unfortunately the file is too large to be uploaded here on PR. Both for the agnostics and for those of us who are seeking the truth and a return to some kind of health, I would suggest that you go on the website where it's posted: www.associationlymesansfrontieres.com

 

[Antares in NYC]

Chronic Lyme is "bullshit"? Really?

I think I may be the poster boy for chronic Lyme:

• Western Blot 1998: three bands showed positive for Lyme. Treated with doxy and other tetracyclines for a year. Things got better, but not even 70% of how it was before. Things slowly started worsening since then.
  
  
• Western Blot 2005 (for an unrelated condition in a completely different part of the country) - doctor comes back to me and ask if I've been told I have Lyme.
  
  
• Igenex full test, 2014: positive and active borrella, according to both Igenex and CDC standards. My health continues to decline, now with all sorts of systemic and new auto-immune issues, and I'm currently at 50% of my physical and mental capacity.

So 16 years later, and many courses of antibiotics over the years, my Lyme infection is active, fine and dandy, camping in my system without a sign of receding.

So, if two weeks of doxy clears the pathogen, as per the outdated and erroneous IDSA standards, how come I still have an active infection 16 years later?