Band 31 Lyme Test Positive

[katieb]

Hi All

Back in April I had the Igenex Western Blot through Breakspear hospital here in the UK, which didn't come out very positive, as follows :

IGM **41 IND
       **83-93 IND

IGG **31 IND
       **39 IND
       **41 ++

All other bands negative.

On the basis of the band 31 IND IGG Dr H at IGenex recommended that I have the Band 31 Epitope test done.

Unfortunately Breakspear don't do this test, so I had to get my GP to sign it off and pay for it directly myself, and it was done at the beginning of May. Since then we have been trying to get the result faxed back to my GP, which proved difficult as their main fax machine was blocked to overseas calls. Anyway, long story short, I finally got the result today and it is POSITIVE !!!! And the GP has asked to see me.

This result is completely logical given the way I have responded to minocycline (very well) over the last 2 years, but have now hit a plateau for about  the past year and am not really improving any more, though I am very lucky in that it is mostly only my wrists which are still affected.

So now I am hoping that I can be treated with some different antibiotics as well as the mino, either by my GP or Dr D at Breakspear.

I know it's not great to have Lyme, but as mine seems to be quite a mild case at present I am really pleased to have the diagnosis !!!!

Katie :roll-laugh:

[lynnie_sydney]

Great to hear from you Katie. And great (in a funny kind of way) that you have a diagnosis at last. Sounds a little like my story – great results on mino, then a plateau.Please keep us posted on how you go with your GP/Breakspear. Lynnie

 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[katieb]

Thanks for that Lynnie ! I will keep you posted.

Do I remember reading something about there isn't Lyme in Australia, so you must have picked it up somewhere else eg the UK ?

I'm not sure whether mine is from the UK or the 2 years in Oklahoma !

Katie

[lynnie_sydney]

Yes, that line is the official one here at the moment. Interesting that there is an aussielyme site however, for those aussies who have it:D. My doc and naturopath also believe that there are other vectors apart from ticks anyway. There are, according to some, different strains here. I also know there is definitely rickettsia here, much milder than the African strain, for instance. My testing (electro-magnetically) picked up that I have Lyme Borellia. Where I got it is the million dollar question. Given that my Mother had her first Palindromic attack just after giving birth to me, there is also the possibility that it crossed the placental barrier. So many possibilities, huh? Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[nspiker]

Hi Katie,

We're going to have to get a bigger clubhouse to fit all 'us lymies :cool:.

That's great that you pursued additional testing.  I was 31 epitope positive too.  When we hit a wall, and treatment is at a standstill, then there's something more to the bacterial component.  It was explained to me that a 31 epitope is definitely lyme, but I don't necessarily feel that's always the case, but it can be a number of different co-infections, some of which they have yet to name.

Now you have a solution and strategy for a full recovery.  Who ever thought we'd be happy to get lyme :shock:.

nancy

[katieb]

Hi Nancy,

I always remembered that your Lyme tests were quite similar to mine.

Yes, daft that we're glad to be diagnosed – but it also gives me ammunition against my rheumy who I'm sure is just itching to get me on to mtx etc !

Whatever the culprit nasty bug, have you seen any improvement whilst using the other antibiotics ? Hope you are doing well !

Katie 🙂

[nspiker]

Katie,

I had NO improvement from Minocin alone. 

Since starting on protozoa/parasite treatment for toxoplasmosis and babesia, I am 50% better.  It's amazing to me how much I can do now, that I wasn't able to do last summer.  I'm so grateful for the nudging, by everyone here, to pursue this treatment. 

I don't recommend starting with a GP, (even though it sounds like he/she's been a great help) because an llmd will get to the heart of the problem faster, and will know how to switch up abx.  They know what symptoms mimic co-infections, and should treat first.  It's like peeling an onion, one layer at a time.

Can't wait to hear your progress…:)
nancy

[Maz]

Katie, thanks for sharing your update. I was wondering what the outcome of your etipope testing had been. 🙂 As always, don't know whether to celebrate the dx or commisserate. UK can be even harder to get adequate treatment….hopefully there is a growing contingent of more Lyme-wise docs now that ILADs had their conference in London in early June.

Pretty sure that Dr. D likes to liase with his patients' GPs, but as a rheumatologist, you wouldn't need your old rheumy anyway, as Dr D would be a one-stop doc for both RA and Lyme. He's private, though…so expensive!!! :doh: If your GP is willing to work with him, you could probably cut your costs substantially. I hope so.

Have you had a chance to read the Burrascano Lyme treatment guidelines? They're pretty much the gold standard used by LLMDs here in the US, along with the ILADs treatment guidelines, and worth printing to read how complex it can be. Lynnie also just came by a summary of a recent talk given by Burrascano that you may find interesting, too.

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

http://www.ilads.org/lyme_disease/treatment_guidelines.html

The reason mino alone isn't likely to be enough for Lyme treatment are the pesky hitch-hiking coinfections of Lyme (ticks often pass more than borreliosis) and also the pleomorphic forms of borreliosis – its dormant cystic, L-form, blebs, etc….all of which need separate treatment. Much is explained in the links above…so you'll be an expert in no time. 🙂

Peace, Maz

 

[katieb]

Hi Nancy & Maz,

Many thanks for your replies. Glad to hear you are seeing a good improvement now Nancy – that seems to verify the diagnosis ! I will have a read of those articles Maz !

I didn't waste any time going to see the GP who is just wonderful and was very interested in it all. He asked what I wanted to do next. So I said I'd go back to Dr D at Breakspear (who already wrote to this GP following my last visit) as he is an experienced LLMD. He said that was fine, and that he was happy to prescribe any 'regular' drugs Dr D recommended on the NHS (but any unusual ones probably wouldn't be available on the NHS), and that he looked forward to hearing the outcome. I really wonder why I have been so lucky through all of this with my GPs – but I'm certainly not complaining :roll-laugh:

As for the rheumy – yes you're right Maz, he does seem a bit redundant now. He is a very quiet chap, and didn't even mention Dr D's letter (unlike Spacehoppa's rheumy who ditched the poor girl – very unpleasant reaction :X). So I didn't mention it either and just went along with him when he said he wanted to take more hand & foot x-rays and see me in another 4 months……………..

So now I'll arrange another visit to Dr D, and post off my Band 31 result to him, and to the chap in pathology down at Breakspear who was also very interested in this test as it's one they don't do yet. He said if many people start requesting it they will probably add it to their list. It will be interesting to see what Dr D recommends – and hope that this apparent investigation he is undergoing doesn't inhibit him too much !

I'll let you know what happens and whether I manage to get off the next layer of onion :roll-laugh:. Knowing me it will be another 6 months before anything happens! Now off to read the articles !!

Thanks again !!!

Katie 😀

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