Aa
CONFUSED WITH RESULTS END OF THE ROAD?
Hi well all my tests for lyme are back.
I have tested positive for 5 bands:
IgG 23
31
39
41
66
93
3 bands Igm
23
39
41
On the paperwork from Igenex, and Immunosiciences it says you have to have 5 bands specific IgG and 2 of IGM, well i have 6 and 3.
I have just received the last results from Invitalab and it says MELISA negative.
No active lymes.
So does that mean I dont have it now then, but did have it one time.
This is a good result isnt it does it mean I can rest easy and it isnt lymes anymore?
So confused with all this to be honest, and i cant talk to my doctor untli the end of the month lol.
My sympoms are worsening the burning in my legs is constant right now, so it is looking perhaps it is MS after all. Mariax
I have tested positive for 5 bands:
IgG 23
31
39
41
66
93
3 bands Igm
23
39
41
On the paperwork from Igenex, and Immunosiciences it says you have to have 5 bands specific IgG and 2 of IGM, well i have 6 and 3.
I have just received the last results from Invitalab and it says MELISA negative.
No active lymes.
So does that mean I dont have it now then, but did have it one time.
This is a good result isnt it does it mean I can rest easy and it isnt lymes anymore?
So confused with all this to be honest, and i cant talk to my doctor untli the end of the month lol.
My sympoms are worsening the burning in my legs is constant right now, so it is looking perhaps it is MS after all. Mariax
We go by IgenX and symptoms. I would say you still have it otherwise why the symptoms. Many doctors don't even do those IgenX tests that you had.
I was told by a well known LLMD that MS equals Lyme if you have anything positive at all. I was misdiagnosed with MS and woke up in the hospital on a ventilator, half dead from steroids given for my non existent MS and Lupus. If possible do an IgenX co- infection test before deciding.
I am sorry, it all ***** but my goal is to help newbies going through the misdiagnostic h-ll that most of us have been through.
Chin up and don't give up!
I was told by a well known LLMD that MS equals Lyme if you have anything positive at all. I was misdiagnosed with MS and woke up in the hospital on a ventilator, half dead from steroids given for my non existent MS and Lupus. If possible do an IgenX co- infection test before deciding.
I am sorry, it all ***** but my goal is to help newbies going through the misdiagnostic h-ll that most of us have been through.
Chin up and don't give up!
The igenex showed i had co infection erlichia the test was 40 instead of <20. Is that what you mean?
Yes , exactly, so you do still have it. It's not MS which is a good thing since this is curable. I have big time short term memory problems so if you said that before, I am sorry. This stuff about you had it in the past, when the symptoms are still there is a sick joke.
I am not familiar with Invitalab, so can't comment on their approach or their results, but as to the 'MELISA' test, that may refer to ELISA, which is one of the older tests for Lyme and is not entirely accurate for a number of reasons.
I am assuming the following bands you listed were from IGeneX? The lab would normally send back results with + or - signs next to each band, and the more +++ marks after a band, the stronger the reaction, and thus more surety about the infection. (I am in the habit of always getting hard copy of all test results from the doc AT the appointment, because asking for the results later means the [lazy] person behind the desk may or may not copy all that is in the file and that may be of interest to a future MD. If I forget and have to ask later, I offer to pay them for copies if it is a burden on their budget, and say specifically that I want ALL the pages. But I digress.)
Here is the interpretation of your bands from a website called truthaboutlymedisease (take it for what it's worth). "Specific" means no bacteria other than Lyme would give a positive result on that band (Bb = Borellia burgdorferi, the formal name for the Lyme bacterium):
23 -- outer surface protein C (OspC), specific for Bb
31 -- OspA, specific for Bb
39 -- a major protein of the Bb flagellin [whip tail]; specific for Bb
41 -- reacts to all spirochetes (spiral-shaped bacteria), including Lyme
66 -- common in all bacteria, including Bb
93 -- unknown, probably the same as band 83, which is a specific antigen for Bb, so counts as a positive
The IgM and IgG antibodies your immune system makes against bacteria appear at different times: one soon after infection, the other later on. The band numbers have the same meaning (as in Lyme or not-Lyme) whether IgM or IgG.
So it looks like you've got the gold medal in proving you have Lyme -- a sad distinction, because it means you've got Lyme, but a victory in being able to get treated.
If you have not also been tested for co-infections (other diseases that the Lyme ticks often carry along with Lyme), then your doc should look into that. The tests are separate from the Lyme tests and are ordered depending on your other symptoms, such as the burning in your legs.
Congratulations is an odd word to apply to learning you have an illness, but it means you now have evidence get yourself treated properly. If they try to foist off a couple weeks of doxycycline on you without anything further (testing or other meds), I would find another doc who is more aggressive about diagnosis and treatment.
Get copies of all the detailed test results, and plow ahead -- you're now on the trail to getting well! Somewhere here I posted yesterday a link to the name of MD in England who may treat or be able to guide you to an LLMD.
Take care -- and take heart!
I am assuming the following bands you listed were from IGeneX? The lab would normally send back results with + or - signs next to each band, and the more +++ marks after a band, the stronger the reaction, and thus more surety about the infection. (I am in the habit of always getting hard copy of all test results from the doc AT the appointment, because asking for the results later means the [lazy] person behind the desk may or may not copy all that is in the file and that may be of interest to a future MD. If I forget and have to ask later, I offer to pay them for copies if it is a burden on their budget, and say specifically that I want ALL the pages. But I digress.)
Here is the interpretation of your bands from a website called truthaboutlymedisease (take it for what it's worth). "Specific" means no bacteria other than Lyme would give a positive result on that band (Bb = Borellia burgdorferi, the formal name for the Lyme bacterium):
23 -- outer surface protein C (OspC), specific for Bb
31 -- OspA, specific for Bb
39 -- a major protein of the Bb flagellin [whip tail]; specific for Bb
41 -- reacts to all spirochetes (spiral-shaped bacteria), including Lyme
66 -- common in all bacteria, including Bb
93 -- unknown, probably the same as band 83, which is a specific antigen for Bb, so counts as a positive
The IgM and IgG antibodies your immune system makes against bacteria appear at different times: one soon after infection, the other later on. The band numbers have the same meaning (as in Lyme or not-Lyme) whether IgM or IgG.
So it looks like you've got the gold medal in proving you have Lyme -- a sad distinction, because it means you've got Lyme, but a victory in being able to get treated.
If you have not also been tested for co-infections (other diseases that the Lyme ticks often carry along with Lyme), then your doc should look into that. The tests are separate from the Lyme tests and are ordered depending on your other symptoms, such as the burning in your legs.
Congratulations is an odd word to apply to learning you have an illness, but it means you now have evidence get yourself treated properly. If they try to foist off a couple weeks of doxycycline on you without anything further (testing or other meds), I would find another doc who is more aggressive about diagnosis and treatment.
Get copies of all the detailed test results, and plow ahead -- you're now on the trail to getting well! Somewhere here I posted yesterday a link to the name of MD in England who may treat or be able to guide you to an LLMD.
Take care -- and take heart!
Here is one old message from 2010, not the one I was thinking of, but perhaps useful (and cautionary?) data:
============================
Dr Monro & Breakspear Hospital outside NW London in Hemel Hempstead is very good.
The Hospital is very very expensive though & she does like to order several tests costing a small fortune.
She also like to presribe hundreds of supplements etc. You just have to be shrude and say, no thanks, I'm on a tight budget, just give me the oral antibiotics and some basic supplements that shouldn't cost me more than £30 per month. Thats what I do anyway.
They have a full body hyperthermia bed there that brings the body into an artificial fever, 104 -105F which is supposed to be excellent for killing lyme and co-infections. Sauna's can't do this, even far infrared ones wouldn't get the core body temp this warm, they do this under proper medical supervision @ a cost of £95 which is a fair price. Havn't done it yet but will like to do faily soon as the results are supposed to be very good for lyme.
====================================
============================
Dr Monro & Breakspear Hospital outside NW London in Hemel Hempstead is very good.
The Hospital is very very expensive though & she does like to order several tests costing a small fortune.
She also like to presribe hundreds of supplements etc. You just have to be shrude and say, no thanks, I'm on a tight budget, just give me the oral antibiotics and some basic supplements that shouldn't cost me more than £30 per month. Thats what I do anyway.
They have a full body hyperthermia bed there that brings the body into an artificial fever, 104 -105F which is supposed to be excellent for killing lyme and co-infections. Sauna's can't do this, even far infrared ones wouldn't get the core body temp this warm, they do this under proper medical supervision @ a cost of £95 which is a fair price. Havn't done it yet but will like to do faily soon as the results are supposed to be very good for lyme.
====================================
A post I made a few days ago that may give you further leads if you need them:
============================================
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/
===============================================
============================================
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/
===============================================
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.
=== 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.
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!
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!
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
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
looks like you got a hell of a birthday present this year, mrs. a.
oxoxxo
oxoxxo
Believe it or not, it's good news. I was told I had MS and I much rather have Lyme because you can be cured. I try to stay positive, not always easy but possible.
OH NO WHAT A MESS. I DONT HAVE LYMES.
I kept thinking about the results AFTER WHAT Niko wrote and re read the copy of the letter this morning which I had just received which was originally sent to my doctor which was sent by Dr munro and it didnt make no sense, so I checked back on the Igenex results, and have found a real mess.
I dont have 6 IgG.
What has happened is Dr Munro must have dictated some of the letter to her secretary and gave her a copy of the results from Igenex and immunosciences, and what I think has happened is she has seen the stars by the side of the numbers and just assumed those were the results i had.
BUT they are not. The stars are the bands they would expect to see on a western blot which I knew anyway.
So she has typed them all down and when I read the letter it reads as though I have those bands but I dont as when i went through my results this morning I could see straight away what she has done.
So the results are just as they were from the beginning and the only difference is the immunoscience finding the positive IgG Outer Surface P. A=C 1.4 Lyme antibodies (peptides), and the and IgG C2 + C6 immunodominant at 2.1.
I feel really stupid now.
So i do have 3 igG, and 1 igM.
So nothing really.
I was so upset I rang and spoke to her secretary and she said she had misunderstood what was meant to be written to my doctor. Thankfully my doctor had no clue what the results meant as I spoke to her today so no harm done there then.
So still totally non the wiser.
I did think it was odd when i got a copy of the letter and all the results lol, i just assumed it was right, as my brain i thought the extra results were from immunosciences as there was tons of stuff on the results form I didnt understand.
I give up to be honest.
Its all too confusing. I am destined to stay in limbo land. maria
I kept thinking about the results AFTER WHAT Niko wrote and re read the copy of the letter this morning which I had just received which was originally sent to my doctor which was sent by Dr munro and it didnt make no sense, so I checked back on the Igenex results, and have found a real mess.
I dont have 6 IgG.
What has happened is Dr Munro must have dictated some of the letter to her secretary and gave her a copy of the results from Igenex and immunosciences, and what I think has happened is she has seen the stars by the side of the numbers and just assumed those were the results i had.
BUT they are not. The stars are the bands they would expect to see on a western blot which I knew anyway.
So she has typed them all down and when I read the letter it reads as though I have those bands but I dont as when i went through my results this morning I could see straight away what she has done.
So the results are just as they were from the beginning and the only difference is the immunoscience finding the positive IgG Outer Surface P. A=C 1.4 Lyme antibodies (peptides), and the and IgG C2 + C6 immunodominant at 2.1.
I feel really stupid now.
So i do have 3 igG, and 1 igM.
So nothing really.
I was so upset I rang and spoke to her secretary and she said she had misunderstood what was meant to be written to my doctor. Thankfully my doctor had no clue what the results meant as I spoke to her today so no harm done there then.
So still totally non the wiser.
I did think it was odd when i got a copy of the letter and all the results lol, i just assumed it was right, as my brain i thought the extra results were from immunosciences as there was tons of stuff on the results form I didnt understand.
I give up to be honest.
Its all too confusing. I am destined to stay in limbo land. maria
"So i do have 3 igG, and 1 igM.
"So nothing really."
Which bands were these? That matters! And how many * did they each have?
"So nothing really."
Which bands were these? That matters! And how many * did they each have?
Maria just compare those against the list from IGeneX in my post.
Abnormal brain function, neurotoxins produced by Bb, lyme meningitis
and other neurological manifestation with Lymes is likely and this can make the simplest cognitive tasks very difficult!
( It seems that I'm going with the LD dx for you, but let us know which bands were there.)
Take extra time, ask questions, even if you feel that they're stupid,
don't worry about it! Everyone in this community understands, otherwise what are THEY doing here, right?
So just ask.
Hugs,
Niko
Abnormal brain function, neurotoxins produced by Bb, lyme meningitis
and other neurological manifestation with Lymes is likely and this can make the simplest cognitive tasks very difficult!
( It seems that I'm going with the LD dx for you, but let us know which bands were there.)
Take extra time, ask questions, even if you feel that they're stupid,
don't worry about it! Everyone in this community understands, otherwise what are THEY doing here, right?
So just ask.
Hugs,
Niko
Yes, what a mess! Very confusing. Sounds like a good reason to send patients an actual copy of the lab results rather than dictating letters.
I haven't given up on Lyme for you either. You have Ehrlichia, which comes from a tick bite, and you have symptoms consistent with late stage neuro Lyme, and you don't fit the MS profile enough to get a diagnosis of it. You have some evidence of Lyme...has your doctor said anything about doing an antibiotic challenge for you? I think it would be worthwhile.
I haven't given up on Lyme for you either. You have Ehrlichia, which comes from a tick bite, and you have symptoms consistent with late stage neuro Lyme, and you don't fit the MS profile enough to get a diagnosis of it. You have some evidence of Lyme...has your doctor said anything about doing an antibiotic challenge for you? I think it would be worthwhile.
Hey Maria!
This is becoming quite a thread.
While we're at it, don't forget Bartonella!
The photos you sent-remember?- and the symptoms you mentioned were SCREAMING Bartonella !!!
Blood tests for most strains are not sensitive enough to detect it and the same for Ehrlichia- as Rico mentioned - (there are no tests for many species)- so a clinical dx is probably necessary.
This means that your specialist will have to be darn good!
It seems that we're gonna be keeping an eye on you, as long as you keep
posting and giving us updates.
Hugs.
Niko
Rico's antibiotic challenge suggestion would make sense at this point.
Rico. You've come a Looong way since we first met last year!
This is becoming quite a thread.
While we're at it, don't forget Bartonella!
The photos you sent-remember?- and the symptoms you mentioned were SCREAMING Bartonella !!!
Blood tests for most strains are not sensitive enough to detect it and the same for Ehrlichia- as Rico mentioned - (there are no tests for many species)- so a clinical dx is probably necessary.
This means that your specialist will have to be darn good!
It seems that we're gonna be keeping an eye on you, as long as you keep
posting and giving us updates.
Hugs.
Niko
Rico's antibiotic challenge suggestion would make sense at this point.
Rico. You've come a Looong way since we first met last year!
Yes, I have! Thanks! My PA told me today she was grateful that I was aware of all my meds and possible side effects. She said she has patients that don't know what they're taking and refer to meds as "the red ones" or some other meaningless description.
I do appreciate getting much of my brain back, but I still have a long way to go.
I do appreciate getting much of my brain back, but I still have a long way to go.
Hi just having a break at the minute as I am too confused with it all, and am in so much pain I cant stand it to be honest. I have this stupid rash again since the awful heat we had i havent been able to get right again.
Anyway I found the copy of igenex results.
IGG
41 KDa ++
66 KDa +
83-93 kDa IND
IGM
41 kDa IND
Immunosciences
P41 IgG
P66
Immunosciences Lab
LYMES ANTIBODIES (PEPTIDES)
IgG OspA+OspC (Outer Surface P A+C) high 1.4
IgG Immunodomiant Protein 2.1 (seems quite high for the range).
I shall be talking to her on Tuesday at 10 we have a lot of results to go through as many things have showed up which shouldnt be there.her
Sorry I should have really read the letter properly and put two and two together ordinarily i would have noticed a mistake, now my brain is just not functioning too much brain fog and making stupid mistakes.
Thanks for sticking with me guys.
Mariax
Anyway I found the copy of igenex results.
IGG
41 KDa ++
66 KDa +
83-93 kDa IND
IGM
41 kDa IND
Immunosciences
P41 IgG
P66
Immunosciences Lab
LYMES ANTIBODIES (PEPTIDES)
IgG OspA+OspC (Outer Surface P A+C) high 1.4
IgG Immunodomiant Protein 2.1 (seems quite high for the range).
I shall be talking to her on Tuesday at 10 we have a lot of results to go through as many things have showed up which shouldnt be there.her
Sorry I should have really read the letter properly and put two and two together ordinarily i would have noticed a mistake, now my brain is just not functioning too much brain fog and making stupid mistakes.
Thanks for sticking with me guys.
Mariax
Oh i have no idea what the last two indicate perhaps Niko you can explain please thanks. x
Oh could I have a false negative ... false positive if I have had EBV, CMV and shingles? (Which i have had all 3 lol).
I am not a medical doctor and can relate to the confusion over testing, but as I've written before one way to face a possible diagnosis of chronic infection (Lyme or bartonella or both or other) is to weigh the risks of treatment against the benefits.
Many LLMD's will make clinical diagnoses based on symptoms, history, and the ruling out of other conditions. This is what happened in my case, and I was offered a "trial" of oral antibiotic treatment. Oral antibiotics are generally low-risk, though again I am saying that as a patient and not as a medical expert. I was highly skeptical of chronic infection as a culprit, but my reaction to that initial treatment made the decision of how to proceed more clear to me. Years later, I've recovered a great deal of my health.
It is, no doubt, a departure from mainstream medicine to pursue diagnosis and treatment of chronic Lyme, and to accept that you may never have definitive proof. It seems "backwards," but really the patient must decide if and how to pursue this possibility.
Many of us, had we listened only to specialists and primary care physicians, would never, ever have gotten treatment for chronic Lyme. My personal tally: 1 primary care doctor, 1 rheumatologist, and 4 neurologists all emphatically told me that what I had was not Lyme. I had 4 negative ELISA tests in 1 year, and even my Igenex western blot was inconclusive. I also had a spinal tap (for the purpose of testing for MS), and my spinal fluid tested negative for Lyme. It took my conscience decision to explore options, and again I did so by personally assessing my options, as well as the risks and possible benefits of treating for Lyme despite unclear test results.
I feel for you trying to make sense of all of the test results, it sounds like you are in a lot of pain and are frustrated with the lack of clear answers. I know too how difficult it can be to navigate a situation when you are so sick and run down. I think you are doing a tremendous job evaluating your plan of action and considering alternative directions, and wish you luck moving forward.
Many LLMD's will make clinical diagnoses based on symptoms, history, and the ruling out of other conditions. This is what happened in my case, and I was offered a "trial" of oral antibiotic treatment. Oral antibiotics are generally low-risk, though again I am saying that as a patient and not as a medical expert. I was highly skeptical of chronic infection as a culprit, but my reaction to that initial treatment made the decision of how to proceed more clear to me. Years later, I've recovered a great deal of my health.
It is, no doubt, a departure from mainstream medicine to pursue diagnosis and treatment of chronic Lyme, and to accept that you may never have definitive proof. It seems "backwards," but really the patient must decide if and how to pursue this possibility.
Many of us, had we listened only to specialists and primary care physicians, would never, ever have gotten treatment for chronic Lyme. My personal tally: 1 primary care doctor, 1 rheumatologist, and 4 neurologists all emphatically told me that what I had was not Lyme. I had 4 negative ELISA tests in 1 year, and even my Igenex western blot was inconclusive. I also had a spinal tap (for the purpose of testing for MS), and my spinal fluid tested negative for Lyme. It took my conscience decision to explore options, and again I did so by personally assessing my options, as well as the risks and possible benefits of treating for Lyme despite unclear test results.
I feel for you trying to make sense of all of the test results, it sounds like you are in a lot of pain and are frustrated with the lack of clear answers. I know too how difficult it can be to navigate a situation when you are so sick and run down. I think you are doing a tremendous job evaluating your plan of action and considering alternative directions, and wish you luck moving forward.
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