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
Hey Maria.
I'll try my best to explain, however, after reading the first few lines - you
may be begging me to NEVER attempt something like this AGAIN!
The Lyme disease spirochete -I'll call it Bb from now on- produces many
Outer surface proteins A&B (OspA) and (OspB) -in swollen and unfed ticks
but no OspC, pre-infection stage.
After it's first feasting (you blood), the Bb upregulates OspC in preparation for starting an infection.
The immune system in response puts a lot of strain on the Bb.
Bb, in order to mount a full blown attack and inflict an extensive infection,
downregulates OspC in order to evade the immune system!
During this phase it upregulates other lipoproteins and other Osps substantially, adapting to the environment & time in order to defend itself from innate destruction.
This is what takes place in the initial stages of infection.
There's a complex matrix of constantly changing Bb activity in lipoprotein
expression and regulation, using adaptation and modification, with corresponding humoral response. Your IgG readings at the time of the testing are significant to a degree-high now for example to indicate possible early infection, but in absence of other clinical information, what about mutations and reformulations at later stages of infection eliciting Immune response, thus likely elevated IGg findings? Medical Gibberish.
That's my opinion.
My suggestion, don't bother with this, it will give you a headache.
From what I gather your test results and symptoms show that you fit the Lyme Disease profile well.
Who knows, the founder of "Surviving Neurological Limbo land-No DX" may be out of Limbo! But not any time too soon.
Ciao!
Niko
PS
Completely Off Topic
A friend of mine visited your home town (Napoli). Had a great time but
the city apparently has an uncontrollable cockroach (scarafaggio) infestation. (I figured you wouldn't be visiting there in the near future.)
I'll try my best to explain, however, after reading the first few lines - you
may be begging me to NEVER attempt something like this AGAIN!
The Lyme disease spirochete -I'll call it Bb from now on- produces many
Outer surface proteins A&B (OspA) and (OspB) -in swollen and unfed ticks
but no OspC, pre-infection stage.
After it's first feasting (you blood), the Bb upregulates OspC in preparation for starting an infection.
The immune system in response puts a lot of strain on the Bb.
Bb, in order to mount a full blown attack and inflict an extensive infection,
downregulates OspC in order to evade the immune system!
During this phase it upregulates other lipoproteins and other Osps substantially, adapting to the environment & time in order to defend itself from innate destruction.
This is what takes place in the initial stages of infection.
There's a complex matrix of constantly changing Bb activity in lipoprotein
expression and regulation, using adaptation and modification, with corresponding humoral response. Your IgG readings at the time of the testing are significant to a degree-high now for example to indicate possible early infection, but in absence of other clinical information, what about mutations and reformulations at later stages of infection eliciting Immune response, thus likely elevated IGg findings? Medical Gibberish.
That's my opinion.
My suggestion, don't bother with this, it will give you a headache.
From what I gather your test results and symptoms show that you fit the Lyme Disease profile well.
Who knows, the founder of "Surviving Neurological Limbo land-No DX" may be out of Limbo! But not any time too soon.
Ciao!
Niko
PS
Completely Off Topic
A friend of mine visited your home town (Napoli). Had a great time but
the city apparently has an uncontrollable cockroach (scarafaggio) infestation. (I figured you wouldn't be visiting there in the near future.)
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.
Oh could I have a false negative ... false positive if I have had EBV, CMV and shingles? (Which i have had all 3 lol).
Oh i have no idea what the last two indicate perhaps Niko you can explain please thanks. x
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
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.
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