Seeking LLMD near Manchester UK

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Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/23/2018 3:29 PM (GMT -6)   
I have been Ill now for nearly 3 years and have been diagnosed with ME/CFS.

I am frustrated with the lack of treatment so started doing more research. I came across Lyme disease and the symptoms seemed to match mine perfectly. It also reminded my wife and I of a strange red ring on my leg with a black dot in the middle I had before I was ill. This together with the fact that I used to work outdoors in fields, woods, lakes etc as a photographer has convinced me that I could have Lyme.

I have since been to my doctor and had a blood test from porton down which has just come back negative. I feel like I am being fobbed off and they have declined a test for co infections.

I am considering using Armin labs but am concerned that even if the test are positive I will struggle to get treatment.

Any advice regarding a LLMD would be extremely appreciated.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/23/2018 4:23 PM (GMT -6)   
Hi Drummerboi - welcome!

Where did you have your testing done?

You can do Igenex - Lyme WB IgM and IgG for toal of $250.

They also now have two new tests that look to be similar (or same) as the Armin Labs tests)
Immunoblot and IGXSpot.
But they are more expensive.


If you enable your email option then members can send you names of LLMD's privately. We don't post the names on here for their privacy/protection.

You can also email me and I'll provide you with a few options.

Edit to add: Armin Labs are recognized by LL Dr.'s...so you could test with them.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Szabo246
Veteran Member


Date Joined Sep 2017
Total Posts : 501
   Posted 2/23/2018 4:40 PM (GMT -6)   
Hi drummerboi I am seeing an llmd in the uk so feel free to email me too

sharo
Regular Member


Date Joined Oct 2017
Total Posts : 53
   Posted 2/23/2018 5:37 PM (GMT -6)   
Hi Drummerboi
I had a positive test from Arminlabs for Lymes after having a negative from Porton Down. The NHS will not accept the positive at all! They sent another test to Porton and again it came back negative. After months of waiting with no treatment for chronic symptoms, i went to the Liverpool Tropical and Infectious Disease Unit earlier this month with a full history of 10 years, every symptom i had suffered, pictures of bizarre recent reactions (my neck swelling so badly, you couldn't see a curve on one side) a 28 year old C Scar suddenly becoming swollen etc etc. Within 5 minutes, without my GP sending any history and him not reading the paperwork including Arminlabs accreditations, i was informed in his opinion, i do not have Lymes and my description of being bitten whilst travelling, was met with "there are lot's of insects that can bite you in the world"!!!
In short, getting results from abroad are a pointless excercise...they refuse point blank to accept them and do not follow NICE guidelines to treat clinically for long term Lymes.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/23/2018 7:47 PM (GMT -6)   
sharo said...
Hi Drummerboi
I had a positive test from Arminlabs for Lymes after having a negative from Porton Down. The NHS will not accept the positive at all! They sent another test to Porton and again it came back negative. After months of waiting with no treatment for chronic symptoms, i went to the Liverpool Tropical and Infectious Disease Unit earlier this month with a full history of 10 years, every symptom i had suffered, pictures of bizarre recent reactions (my neck swelling so badly, you couldn't see a curve on one side) a 28 year old C Scar suddenly becoming swollen etc etc. Within 5 minutes, without my GP sending any history and him not reading the paperwork including Arminlabs accreditations, i was informed in his opinion, i do not have Lymes and my description of being bitten whilst travelling, was met with "there are lot's of insects that can bite you in the world"!!!
In short, getting results from abroad are a pointless excercise...they refuse point blank to accept them and do not follow NICE guidelines to treat clinically for long term Lymes.


The test results are accepted by LL Dr.'s in the UK.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/23/2018 10:12 PM (GMT -6)   
Hi everybody and thank you for the response.

@Girlie, I had the NHS Elisa test at porton down and they would not do a Western blot or co infection test. You say LLMD in UK will accept Armin labs tests so I will email you as I can't find many UK llmds.

@zsabo, thank you and I will email you.

@Sharo, your situation is exactly what I am worried about happening, however I still feel I need to know for sure whether it is Lyme or not. 😕

sharo
Regular Member


Date Joined Oct 2017
Total Posts : 53
   Posted 2/24/2018 3:40 AM (GMT -6)   
Hi @ Girlie. Can you give me the details of NHS LL doctors in the UK, who will accept Arminlabs test, as i have been unable to find any, only private clinics and private doctors?
Being on UK benefits, paying for the private treatment is definately out of my reachsad

@Drummerboi, I can understand that you need to know. I was also given M.E/CFS as my condition 10 years ago, but having the exact day,date,month and year before 3 months after returning to the UK I became ill, I had always known it was more likely to be Lyme. My GP at that time was a great traveller and explained even then, that UK testing was unreliable and not fit for purpose.
I live in the Lake District and contacted my MP regarding the treatment I had received after having a positive test and Morecambe CCG sent a letter stating that in a "high risk" area of the country, ALL of the GP's are Lyme Up to date and fully conversant with Lyme Protocol. That is not the case, I have a GP who openly admits she knows very little! An online tutorial available free, was only taken up by 3% of the countrys GP's!

Arminlabs have been very good for testing, they even had a person available to explain the results afterwardssmile

Hopefully, you may find some help, because in my opinion, you know when you have Lyme, simply by history and your own journey over the years. I definately found my symptoms were more akin to Lyme than the M.E symptoms and it is the reason, when they increased, i decided to have private testing.

The NICE draft guidelines for GP's are still having Lyme UK sites complaining regarding the changes and are available to download on LymeUK.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/24/2018 4:28 AM (GMT -6)   
sharo said...
Hi @ Girlie. Can you give me the details of NHS LL doctors in the UK, who will accept Arminlabs test, as i have been unable to find any, only private clinics and private doctors?
Being on UK benefits, paying for the private treatment is definately out of my reachsad

@Drummerboi, I can understand that you need to know. I was also given M.E/CFS as my condition 10 years ago, but having the exact day,date,month and year before 3 months after returning to the UK I became ill, I had always known it was more likely to be Lyme. My GP at that time was a great traveller and explained even then, that UK testing was unreliable and not fit for purpose.
I live in the Lake District and contacted my MP regarding the treatment I had received after having a positive test and Morecambe CCG sent a letter stating that in a "high risk" area of the country, ALL of the GP's are Lyme Up to date and fully conversant with Lyme Protocol. That is not the case, I have a GP who openly admits she knows very little! An online tutorial available free, was only taken up by 3% of the countrys GP's!

Arminlabs have been very good for testing, they even had a person available to explain the results afterwardssmile

Hopefully, you may find some help, because in my opinion, you know when you have Lyme, simply by history and your own journey over the years. I definately found my symptoms were more akin to Lyme than the M.E symptoms and it is the reason, when they increased, i decided to have private testing.

The NICE draft guidelines for GP's are still having Lyme UK sites complaining regarding the changes and are available to download on LymeUK.


I have a couple options for the UK - I don’t know if they are NHS Drs. I also have a few herbalist options in the UK as well.

I don’t know what their protocols are - but over the past few years some members have received treatment.
Send me an email and I will reply tomorrow - it’s time for bed now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 2/24/2018 2:33:11 AM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 2/24/2018 4:36 AM (GMT -6)   
Sharo - szabo may be able to help you too.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sharo
Regular Member


Date Joined Oct 2017
Total Posts : 53
   Posted 2/24/2018 5:08 AM (GMT -6)   
Hi Girlie
Yes, i am emailing her aswell...have a good sleep and thank you.

Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 2/25/2018 7:35 AM (GMT -6)   
@ sharo, I understand what you mean about the gp's and their Lyme knowledge. Both of the gp's I've seen have admitted the same thing ( that they have little Lyme knowledge). And they too seem to hold the belief that Lyme is rare in the UK.

I think I will be going down the Armin route and if it turns out to be positive then I'll probably have to go private for treatment. But at least then I will know what I'm dealing with.

sharo
Regular Member


Date Joined Oct 2017
Total Posts : 53
   Posted 2/25/2018 8:12 AM (GMT -6)   
Good luck and keeps us posted Drummerboi. Armin are very good at giving detailed results for you to research afterwards, unlike Porton Down who give no info at all!

Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 4/20/2018 3:41 PM (GMT -6)   
Hey everyone, it's been a while but finally got my tests done at Armin labs and could do with some help deciphering the results. Thanks in advance!



Haematology *
5 Blood count
5 Leucocytes 5,38 Tsd./ul 3,90 - 9,80 [ ..*..... ]
5 Erythrocytes 5,46 Mill./ul 4,54 - 5,77 [ .....*.. ]
5 Hemoglobin 15,5 g/dl 13,5 - 17,5 [ ....*... ]
5 Hematocrit 47,80 % 40,00 - 51,00 [ .....*.. ]
5 MCV 87,50 fl 80,00 - 96,00 [ ...*.... ]
5 MCH 28,40 pg 28,00 - 33,00 [ *....... ]
5 MCHC - 32,40 g/dl 33,00 - 37,00 <* ........ ]
5 Thrombocytes 214,00 Tsd./ul 146,00 - 328,00 [ ..*..... ]
5 Differential Blood count
5 Neutroph. Granulocytes 46,20 % 40,00 - 75,00 [ .*...... ]
5 Lymphocytes 42,40 % 17,00 - 47,00 [ ......*. ]
5 Monocytes 8,00 % 4,00 - 12,00 [ ....*... ]
5 Eosin. Granulocytes 2,80 % < 7,00 [ ...*.... ]
5 Basoph. Granulocytes 0,60 % < 2,00 [ ..*..... ]

Borrelia EliSpot
1 Borrelia b. Full Antigen ! 2 SI
0-1 = negative
2-3 = weak positive
> 3 = positive

1 Borrelia b. OSP-Mix ! 3 SI
0-1 = negative
2-3 = weak positive
> 3 = positive

1 Borrelia burgdorferi LFA-1 1 SI
0-1 = negative
2-3 = weak positive
> 3 = positive

The results of the Elispot tests indicate weak current
cellular activities against Borrelia burgdorferi.


Explanation of antigens:
Borrelia-burgdorferi Full Antigen: Borrelia burgdorferi B31
reference strain (Borrelia b sensu stricto)
Borrelia-burgdorferi Peptide Mix: OspA from Borrelia b.
sensu stricto, Borrelia afzelii, Borrelia garinii + OspC
native + DbpA recombinant.
Borrelia-burgdorferi LFA-1 (Lymphocyte Function Antigen 1)
Own body protein + Borrelia burgdorferi sensu stricto
(shared epitope). LFA1 can be associated with autoimmune
diseases: collagenosis, Rheumatoid Arthritis,
vasculitis. If positive or borderline positive look at:
ANA, CCP-antibodies, ANCA.
CD3-/CD57+ Cells
5 CD3-/CD56+ Flow Cytometry
5 T cells CD3+ (%) 73,84 % 62,00 - 80,00 [ .....*.. ]
5 T cells CD3+ (absolute) 1684 /ul 900 - 1900 [ ......*. ]
5 NK cells CD56+ CD3- (%) 9,53 % 6,00 - 29,00 [ .*...... ]
5 NK cells CD56+ CD3- (absolute) 217 /ul 60 - 700 [ .*...... ]
5 CD57+ NK-cells (%) 33,47 % 2,00 - 77,00 [ ...*.... ]
5 CD57+ NK-cells (absolute) - 73 /ul 100 - 360 <* ........ ]

The result of the CD57-cell count indicates chronic
immune-suppression, which can be caused by Borrelia
burgdorferi or other bacteria like Chlamydia pneumoniae or
Mycoplasma pneumoniae.


Borrelia IgG-/IgM-SeraSpot®
7 Borr. burgdorferi SeraSpot IgG negative negative
7 Borr. SeraSpot VlsE (afzelii) negative negative
7 Borr. SeraSpot p39 (afzelii) negative negative
7 Borr. SeraSpot p58 (garinii) negative negative
7 Borr. SeraSpot p100 (garinii) negative negative
7 Borr. SeraSpot OspC (afzelii) negative negative
7 Borr. SeraSpot OspC (garinii) negative negative
7 Borr. SeraSpot OspC (s.s.) negative negative
7 Borr. SeraSpot dbpA (afzelii) negative negative
7 Borr. SeraSpot dbpA (garinii) negative negative
7 Borr. SeraSpot dbpA (s.s.) negative negative
7 Borr. burgdorferi SeraSpot IgM negative negative
7 Borr. SeraSpot VlsE (afzelii) negative negative
7 Borr. SeraSpot p39 (afzelii) negative negative
7 Borr. SeraSpot p58 (garinii) negative negative
7 Borr. SeraSpot p100 (garinii) negative negative
7 Borr. SeraSpot OspC (afzelii) negative negative
7 Borr. SeraSpot OspC (garinii) negative negative
7 Borr. SeraSpot OspC (s.s.) negative negative
7 Borr. SeraSpot dbpA (afzelii) negative negative
7 Borr. SeraSpot dbpA (garinii) negative negative
7 Borr. SeraSpot dbpA (s.s.) negative negative

The specific Borrelia burgdorferi-IgG/IgM-antibodies by
SeraSpot (modern Borrelia Westernblot) indicate no humoral
immune response against Borrelia burgdorferi.

Please look at the Borrelia-EliSpot and the CD57-positive
NK-cells. Take into consideration the clinical symptoms and
the differential diagnosis (co-infections).

Bartonella IgG-antibodies
7 Bartonella henselae-IgG (IFT) <1:64 < 1:64 [ ....*... ]
7 Bartonella quintana-IgG (IFT) <1:64 < 1:64 [ ....*... ]
Serological no evidence for an infection with Bartonella
henselae or Bartonella quintana.

We recommend to look at the current cellular activity by the
Bartonella-EliSpot.
validated by
Dr.Armin Schwarzbach

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 4/20/2018 3:59 PM (GMT -6)   
Just a quick reply - looks like your Elispot shows you have Lyme disease.

There's also a recommendation to have the Bartonella Elispot testing done.
Are you going to do that?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 4/20/2018 4:06 PM (GMT -6)   
Thanks Girlie, not sure about the Bartonella elispot yet - still trying to get my head round these results.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 146
   Posted 4/21/2018 6:50 AM (GMT -6)   
Hi Drummerboi, based on those results you need to start some kind of treatment. While not in the UK I know a very good LLMD in sothern Spain who will accept those results.. Im from the UK originally and hes been treating me for the past 6 months.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33795
   Posted 4/21/2018 12:16 PM (GMT -6)   
Spanish - could you send me that info as well? I don’t know if I already have it.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Drummerboi
New Member


Date Joined Feb 2018
Total Posts : 6
   Posted 4/21/2018 12:53 PM (GMT -6)   
Hi Spanish, yes the info would be great please. 👍

Szabo246
Veteran Member


Date Joined Sep 2017
Total Posts : 501
   Posted 4/21/2018 4:29 PM (GMT -6)   
Hi Spanish please could you pm me the info too, always good to have a plan B.

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 146
   Posted 4/29/2018 3:04 AM (GMT -6)   
Sorry everyone, I have been working away for a while. The clinic I have been using is called the marbella lyme clinic. It is owned by a girl called Kim who has/had lyme her self.. They have been brilliant with me over the past 6 months and costs have been very reasonable. They will accept your results from armin labs.

If anyone needs any more info just let me know.
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