A post I made a few days ago that may give you further leads if you need them:
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I did a google search just now for
lyme disease uk
and among the results were (take out the extra spaces in the URLs):
www. lymediseaseaction. org. uk/
www. wadhurst. demon. co. uk/ lyme/
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Here's the name I was looking for:
=== Colin A. Walsh MB BChMRCPI, who is a Specialist Registrar in OB/GYN at Addenbrooke’s Hospital, Cambridge.
He has written a paper I ran across, which may be apropos of nothing in your situation, but gives an idea of his views:
www [dot] ilads [dot] org / files / compendium07 /Walsh [dot] pdf
Warning: sad photos of babies badly affected in utero.
He may be able to refer you to someone closer to you.
Sorry to bombard you with messages, but just noticed your post about the Ehrlichia test result.
I would appear to be positive, meaning you have it. It is one of the 'bonus' diseases that ticks can carry. I got it myself, after my Lyme treatment was long over, and got it not from a tiny Lyme tick, but from a big fat dog tick the size of a peppercorn.
Lyme is worse than Ehrlichia, in my way of thinking, because Lyme is akin to syphilis and does its evil work in dark crannies of the body where it is difficult for medication to locate and kill. Your MD will take the Ehrlichia into account, I would think, but the Lyme is the main action.
Try not to worry -- it is VERY good news that your MD has tested you for all these things and has used IGeneX labs, who are imo the cutting-edge lab for Lyme-related matters.
Take heart! You are on the road. Let us know what and how you do.
Wow! You have a full blown officially positive Western Blot!! You are also yet another example of why the ELISA and its variations are such poor screening tests for Lyme. Just imagine... Any doctor or lab following the CDC two tier testing protocol would not have even run your Western Blot.
Did I read right that you have a month to your next appointment? My tests came in a week after my first appointment and they called me up to tell me to start on Azithromycin, and then a week later on another one for the Bartonella. (They don't start two at once.). Can you call up your doc to ask if you can start an oral abx so that you don't have another month's delay in starting treatment?
How do you feel? Relieved? Still not convinced? You probably don't have MS. Lyme s--cks, but knowing you can get better is wonderful!
Wow! You have a full blown officially positive Western Blot!! You are also yet another example of why the ELISA and its variations are such poor screening tests for Lyme. Just imagine... Any doctor or lab following the CDC two tier testing protocol would not have even run your Western Blot.
Did I read right that you have a month to your next appointment? My tests came in a week after my first appointment and they called me up to tell me to start on Azithromycin, and then a week later on another one for the Bartonella. (They don't start two at once.). Can you call up your doc to ask if you can start an oral abx so that you don't have another month's delay in starting treatment?
How do you feel? Relieved? Still not convinced? You probably don't have MS. Lyme s--cks, but knowing you can get better is wonderful!
Hey Maria.
May be you ought to move to the U.S.!! Lol!
How would Mike like this? ( I could come down and visit, we could
tell medical b.s. stories in person while me and Mike are having a Bourbon
on the rocks! You can have tea only. Doctor's orders! Lol!)
I will take Lymes any time, instead of MS.
Time to start celebrating not, but putting a smile on your face, YES!
The results you posted, are in comparison to your previous test-
I'm going by memory- better not, I'll look it up...
June 22, 2012
Lyme IgM/igM seriology was within the normal range
Lyme IgM Western Blot was reported as negative with an indeterminant band at 41kDa
Lyme IgG Western Blot was reported as negative with an indeterminant band at 83-93 kDa, + band at 66 kDa and ++ band at 41 kDa.
Igenex Western Blot Break Down by band.
(There are nine known Borrelia burgdorferi genus species specific KDA Western Blot antibodies (bands) against an estimated 1800 spirochete different proteins. We are still at the infancy stage with this, lol!)
9 cross-reactive for Borrellia
12 specific for Bb
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain - Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
34 outer surface protein B (Osp; specific for Bb)
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]
You can draw your own conclusions from this list.
Remember, I also did a report for you recently ... Well here it is again.
(For the benefit of all readers here.)
As I've sent you tons of info, It can be classified as information overload easily, so don't feel bad. Actually you deserve an award for your persistence and determination to see this through.
"These tests you speak of for Lyme disease utilise a novel method called
multi-peptide ELISA (enzyme-linked immunosorbent assay), which is a form of serological test i.e. looking for antibodies to the Borrelia
antigen. It is similar to, but more sensitive than, the ELISA technique. It is not the same as the Western blot or Lymphocyte transformation test.
Immunosciences new generation assessments for Lyme disease deal with the measurement of antibodies to antigens of Borrelia grown in culture, as well as the proteins associated with spirochaete expression of a variety of antigens during human infection. The Lyme profiles assess infection with three different subspecies of Borrelia and antibodies, reaction to Babesia, Ehrlichia and Bartonella.
Lyme Panel A includes multi-peptide ELISA testing for Borrelia burgdorferi, Borrelia burgdorferi sensu stricto, Borrelia garinii, Borrelia afzelii, Babesia, Ehrlichia and Bartonella.
Immunoserology of Lyme Panel B measures Lyme Panel A as well as a standard Western Blot for Borrelia burgdorferi IgG and IgM antibodies.
Source: Breakspear Medical Group.
The MELISA format is a newer Lymphocyte transformation test( LTT )
LTTs were in the past of limited clinical usefulness, because of the poorly defined Borrelia Antigens and nonstandardized LTT formats used."
How are going to proceed with the possible treatment option?
This should be expedited, as Rico mentioned.
Is it out of pocket or are you going through the U.K. NHS?
One thing to note is that any co-infections MUST be dealt with thoroughly, as they will interfere with any possible Lyme's treatment.
Hang in there. The best is yet to come!
Hugs!
Niko