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What consititues a negative or positive IGG or IGM for Lyme?
I'm quite sure I have Lyme disease, and probably also have Babesia and Bartonella given all my symptoms and what MRIs and CT scans have shown so far. (I've had symptoms for over a year.) My cerebral spinal fluid test for Lyme antibodies was negative, but I've heard that test isn't worth much. My IGA serum test came in at 90 (normal is 70-400), my IGM at 98 (normal is 40-230) and my IGG at 744 (700-1600). I can't find anything on the Internet that tells me what constitues a negative or positive cutoff for Lyme. Can anyone tell me if my IGM and IGG levels can be this low and I can still have Lyme?
Thanks!
Thanks!
The assumptions are stunning. You can read the actual text on their website. Here's my summary:
They say continued antibiotics beyond the "normally curative courses" are not effective because
1. Lyme is not antibiotic resistant (Assumption: 4 weeks will kill all of it.)
2. Persistent symptoms are not objectively measured (Assumption: Whatever the patient says s/he feels doesn't matter if we can't objectively measure it.)
3. No other spirochete before has required long treatment (Assumption: Nothing new will arise in the field of medicine that is different, unique, or contrary to our current knowledge base.)
4. No other ongoing bacterial infection results in a significant decline in antibodies (Assumption: Because your antibodies decline, the infection must be gone. Never mind all the evidence that Lyme is immunosuppresive and hides from the immune system!)
5. Lyme disease doesn't look like other bacterial infections that require long courses of antibiotics. (Assumption: Again, that we know all there is to know, and we will assume that any new pathogen will act in a way we expect it to.)
6. Patients with "Post Lyme Symptom" do not improve with another 28 days of IBX. (Assumption: We are right. The patient is wrong. The improvement reported by patients isn't real. They're making it up because they just WANT to feel better.)
One underlying assumption and conclusion in all of this: We are right. Those who disagree with us are wrong. Therefore, we will not actually do or read about a study with long term antibiotics. To do such a study would suggest that we are questioning ourselves.
And the last two sentences reveal their absolute contempt for patients:
Anecdotally, some experience a
subjective improvement while on antibiotics, with
symptoms recurring rapidly following medication
discontinuation, suggesting a placebo effect. Still,
based on a transient improvement in symptoms,
some physicians have treated patients with PLS with
various antibiotic regimens for months to years.
They say continued antibiotics beyond the "normally curative courses" are not effective because
1. Lyme is not antibiotic resistant (Assumption: 4 weeks will kill all of it.)
2. Persistent symptoms are not objectively measured (Assumption: Whatever the patient says s/he feels doesn't matter if we can't objectively measure it.)
3. No other spirochete before has required long treatment (Assumption: Nothing new will arise in the field of medicine that is different, unique, or contrary to our current knowledge base.)
4. No other ongoing bacterial infection results in a significant decline in antibodies (Assumption: Because your antibodies decline, the infection must be gone. Never mind all the evidence that Lyme is immunosuppresive and hides from the immune system!)
5. Lyme disease doesn't look like other bacterial infections that require long courses of antibiotics. (Assumption: Again, that we know all there is to know, and we will assume that any new pathogen will act in a way we expect it to.)
6. Patients with "Post Lyme Symptom" do not improve with another 28 days of IBX. (Assumption: We are right. The patient is wrong. The improvement reported by patients isn't real. They're making it up because they just WANT to feel better.)
One underlying assumption and conclusion in all of this: We are right. Those who disagree with us are wrong. Therefore, we will not actually do or read about a study with long term antibiotics. To do such a study would suggest that we are questioning ourselves.
And the last two sentences reveal their absolute contempt for patients:
Anecdotally, some experience a
subjective improvement while on antibiotics, with
symptoms recurring rapidly following medication
discontinuation, suggesting a placebo effect. Still,
based on a transient improvement in symptoms,
some physicians have treated patients with PLS with
various antibiotic regimens for months to years.
"[The test subjects] reported significant improvements in fatigue in those on IV Abx after 1 month, but then diminished those results by saying that because more of the patients on Abx guessed that they were indeed on Abx there must be a placebo effect."
That's priceless. The fact that the test subjects guessed correctly that they were on abx instead of placebo doesn't diminish the validity of the test, since the tests were done blind! If the test subjects KNEW which group they were in (placebo vs real meds), then the test subjects' guess would have been tainted ... *but not if they didn't know beforehand what they were taking*. Sigh.
I have not looked very hard, but have found nothing in nonLLMD literature discussing the fact that Lyme bacteria divide slowly, like tuberculosis and leprosy bacteria do, and that each of those diseases has as the standard treatment many months of abx: TB requires 18 months' antibiotics and docs don't think twice about it.
Mainstream medicine gets stuck on stupid when it comes to Lyme. What a scandal! Looking forward to the "ah-HA!" moment. May it come soon.
That's priceless. The fact that the test subjects guessed correctly that they were on abx instead of placebo doesn't diminish the validity of the test, since the tests were done blind! If the test subjects KNEW which group they were in (placebo vs real meds), then the test subjects' guess would have been tainted ... *but not if they didn't know beforehand what they were taking*. Sigh.
I have not looked very hard, but have found nothing in nonLLMD literature discussing the fact that Lyme bacteria divide slowly, like tuberculosis and leprosy bacteria do, and that each of those diseases has as the standard treatment many months of abx: TB requires 18 months' antibiotics and docs don't think twice about it.
Mainstream medicine gets stuck on stupid when it comes to Lyme. What a scandal! Looking forward to the "ah-HA!" moment. May it come soon.
Correction: That document is on the IDSA website, but it is produced by the American Academy of Neurology (AAN).
It's very disappointing to see that the AAN is just as bad as the IDSA when it comes to only looking for the results they want to see.
It's very disappointing to see that the AAN is just as bad as the IDSA when it comes to only looking for the results they want to see.
I just checked out an IDSA document on neuroborelliosis (which I have), and it's unbelievable.
They did 3 trials of patients previously treated with 2-4 weeks antibiotics who were still sick after treatment. Each trial was a bit different, but the total # of patients is 221. They excluded patients with "confounding medical conditions" but didn't explain what that meant. They treated them for another 28 days. One of the trials gave some patients a placebo. They reported significant improvements in fatigue in those on IV Abx after 1 month, but then diminished those results by saying that because more of the patients on Abx guessed that they were indeed on Abx there must be a placebo effect. (Uh, perhaps they guessed they were on Abx because they actually FELT better!?)
Then, they print their conclusion as follows:
Conclusions. Several Class I studies indicate that the
disorder referred to as post-Lyme syndrome does
not respond to prolonged courses of antibiotics and
that such treatment can be associated with serious
adverse events (see below).
Wow! Because they weren't well in 28 days on a second round means that any more antibiotics are useless? What? What school of logic did these physicians go to? That makes absolutely no sense to me, and I'm not a medical professional. However, I have been a business and systems analyst, and I still don't see how a study that shows that 28 days of treatment didn't make someone well means that such treatment was useless and the patient's symptoms are permanent and cannot be helped.
To really test the long term antibiotics question, they need to give them treatment until symptoms go away, and then follow up and see how they do (which is what my doc will actually do). If they won't actually give long term treatment, then they really don't know, do they??
They did 3 trials of patients previously treated with 2-4 weeks antibiotics who were still sick after treatment. Each trial was a bit different, but the total # of patients is 221. They excluded patients with "confounding medical conditions" but didn't explain what that meant. They treated them for another 28 days. One of the trials gave some patients a placebo. They reported significant improvements in fatigue in those on IV Abx after 1 month, but then diminished those results by saying that because more of the patients on Abx guessed that they were indeed on Abx there must be a placebo effect. (Uh, perhaps they guessed they were on Abx because they actually FELT better!?)
Then, they print their conclusion as follows:
Conclusions. Several Class I studies indicate that the
disorder referred to as post-Lyme syndrome does
not respond to prolonged courses of antibiotics and
that such treatment can be associated with serious
adverse events (see below).
Wow! Because they weren't well in 28 days on a second round means that any more antibiotics are useless? What? What school of logic did these physicians go to? That makes absolutely no sense to me, and I'm not a medical professional. However, I have been a business and systems analyst, and I still don't see how a study that shows that 28 days of treatment didn't make someone well means that such treatment was useless and the patient's symptoms are permanent and cannot be helped.
To really test the long term antibiotics question, they need to give them treatment until symptoms go away, and then follow up and see how they do (which is what my doc will actually do). If they won't actually give long term treatment, then they really don't know, do they??
From an earlier post -Oct21st
Fibromyalgia...is this the end? Re: Why Doctors aren't willing...
My reply:
"Hey Everybody.
I took time to read all the various comments here.
There seems to be a lot of interest to help and support or to seek help and support, a lot of useful contributions and a lot of confusion also regarding these conditions.
Specifically testing and diagnosis. Very justifiable confusion.
Some information to help some members understand what they are up against, and why we must all become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.)
Lyme Disease along with all the other Pathogenic Infections, including Pathogenic Mycoplasma infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or un-diagnosed diseases in the western world.
IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most health authorities and medical doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.
From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act".
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?
Their denial that Pathogenic Infections and Lyme disease
are chronic conditions is welcomed by Insurance, Employers -like the U.S
Goverment- Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.
Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
I'm planning a meeting in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)
I strongly suspect that the interests of health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme . It was a step in the right direction , however, NOT MUCH has changed 9 years later-my opinion only- as these agencies are largely self-regulated)
Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL
Another time I will explore inefficiencies, limitations and faults of tests and labs.
Please post your comments. Do not keep them for yourselves.
Even if you do not agree or have some skepticism with something.
At the end, who knows, truth might prevail.
Blessings to All.
Niko "
The above post gives you an idea of what is going on.
Stay strong and keep on pursuing what's best for your health!
You are very courageous and a great model for many to learn from!
If you have any comments or questions do not hesitate to pm me directly
or copy and paste from your last post to start new thread and then post again. Good idea from Jackie.
Happy and safe Holidays to All!
Niko
Fibromyalgia...is this the end? Re: Why Doctors aren't willing...
My reply:
"Hey Everybody.
I took time to read all the various comments here.
There seems to be a lot of interest to help and support or to seek help and support, a lot of useful contributions and a lot of confusion also regarding these conditions.
Specifically testing and diagnosis. Very justifiable confusion.
Some information to help some members understand what they are up against, and why we must all become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.)
Lyme Disease along with all the other Pathogenic Infections, including Pathogenic Mycoplasma infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or un-diagnosed diseases in the western world.
IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most health authorities and medical doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.
From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act".
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?
Their denial that Pathogenic Infections and Lyme disease
are chronic conditions is welcomed by Insurance, Employers -like the U.S
Goverment- Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.
Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
I'm planning a meeting in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)
I strongly suspect that the interests of health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme . It was a step in the right direction , however, NOT MUCH has changed 9 years later-my opinion only- as these agencies are largely self-regulated)
Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL
Another time I will explore inefficiencies, limitations and faults of tests and labs.
Please post your comments. Do not keep them for yourselves.
Even if you do not agree or have some skepticism with something.
At the end, who knows, truth might prevail.
Blessings to All.
Niko "
The above post gives you an idea of what is going on.
Stay strong and keep on pursuing what's best for your health!
You are very courageous and a great model for many to learn from!
If you have any comments or questions do not hesitate to pm me directly
or copy and paste from your last post to start new thread and then post again. Good idea from Jackie.
Happy and safe Holidays to All!
Niko
I'm SO sorry to hear about this 'adventure' you had.
Good for you for persisting, and thank you for posting your experience.
So the experience doesn't get lost in the email chain, would you copy and paste your post as a new thread here where it might catch someone's eye who badly needs the information but doesn't know it? "When MDs ignore your symptoms ..."
This is important data to help everyone understand the shortcomings of mainstream medicine so we can defend ourselves.
Take care -- and keep fighting! J.
Good for you for persisting, and thank you for posting your experience.
So the experience doesn't get lost in the email chain, would you copy and paste your post as a new thread here where it might catch someone's eye who badly needs the information but doesn't know it? "When MDs ignore your symptoms ..."
This is important data to help everyone understand the shortcomings of mainstream medicine so we can defend ourselves.
Take care -- and keep fighting! J.
I did the full Lyme panel and full co-infection panel at IGeneX, and then 3 hours later, drove myself to the ER. They admitted me for 3 days for severe abdominal and rib pain. They did multiple scans and blood tests and came up empty.
I kept telling them I was sure I had Lyme (30+ symptoms!!) and they ignored me. I was told that my prior negative CSF Lyme test was an "extremely accurate test." When I tried to explain what I'd read about most late stage patients having no antibodies in their CSF, the hospitalist cut me off and said, "It doesn't matter what you read. None of us think you have Lyme." They didn't do any Lyme tests at all. When I asked if there was a Lyme expert in network, he said, "No, not that I know of." Then I asked for an out of network referral to a Lyme expert to either exclude or confirm Lyme, he said, "No". Then he proceeded to keep me in the hospital another day and ordered an MRI of my back, thinking maybe it was nerves in my back causing the mysterious pain in my stomach and liver area. AARRGGHH! Note: This is a prestigious hospital in the SF Bay Area.
After I got out, the IGeneX tests came back with a positive IgM Western blot and positive for Bartonella. My original neurologist was very surprised, but he's a good listener, so I told him what I had learned about the flaws of testing. "Very interesting," he said. "I didn't know about that."
I'm just about to fill out that patient survey the hospital sent me...
WHY aren't doctors willing to do ANY research on a disease they don't know well? I saw my neuro researching MS when he thought I might have it but I didn't fit the profile. He knows MS pretty well already. Why didn't he research Lyme when he knew nothing about it?
I kept telling them I was sure I had Lyme (30+ symptoms!!) and they ignored me. I was told that my prior negative CSF Lyme test was an "extremely accurate test." When I tried to explain what I'd read about most late stage patients having no antibodies in their CSF, the hospitalist cut me off and said, "It doesn't matter what you read. None of us think you have Lyme." They didn't do any Lyme tests at all. When I asked if there was a Lyme expert in network, he said, "No, not that I know of." Then I asked for an out of network referral to a Lyme expert to either exclude or confirm Lyme, he said, "No". Then he proceeded to keep me in the hospital another day and ordered an MRI of my back, thinking maybe it was nerves in my back causing the mysterious pain in my stomach and liver area. AARRGGHH! Note: This is a prestigious hospital in the SF Bay Area.
After I got out, the IGeneX tests came back with a positive IgM Western blot and positive for Bartonella. My original neurologist was very surprised, but he's a good listener, so I told him what I had learned about the flaws of testing. "Very interesting," he said. "I didn't know about that."
I'm just about to fill out that patient survey the hospital sent me...
WHY aren't doctors willing to do ANY research on a disease they don't know well? I saw my neuro researching MS when he thought I might have it but I didn't fit the profile. He knows MS pretty well already. Why didn't he research Lyme when he knew nothing about it?
I think you're going the right way by getting further testing. I just went through a bout with thread worms, once you got em you got em, you got em for life they say. But I think I beat them. Helminths, like the Lyme spirochete can shut down your immune response to them. Had I got an IgG test done, it probably would have been negative at first, then low, then off the scale. These things even had my lymphatic passages sealed off! Its really an odd thing to flow start again! All you need is something to stir up your immune response to the Lyme spirochete before you get you blood drawn, if you're not already on some antibiotic, get some and take them before hand. I'll bet the numbers will be higher than they were.
These IgG and IgM tests look for antibodies your immune system makes against the Lyme bacteria. A higher IgM indicates a more recent infection, and a higher IgG indicates an infection that has been in place longer.
They are two different antibodies, from what I understand (and I'm not medically trained), and they are useful to the doc to have an idea of where you are in an infection.
There is no limit or cut off, just a directional indicator useful over time to measure your immune system response to infection by Lyme. It's an art, not a science.
They are two different antibodies, from what I understand (and I'm not medically trained), and they are useful to the doc to have an idea of where you are in an infection.
There is no limit or cut off, just a directional indicator useful over time to measure your immune system response to infection by Lyme. It's an art, not a science.
Thanks! I've already ordered the test kit from Igenex. Hopefully it will arrive quickly.
Hey Riciboro.
Welcome to the Forum.
These findings are indicative only, NOT diagnostic.
Following is Dr. Burrascano's Diagnostic Criteria (use as a guide only)
CDC's criteria are for investigative and surveillance purposes and not for diagnosis. Many Doctor's use their Criteria for dx. WRONG!
Should your Doctor go by CDC's or IDSA (Infectious Disease Society of America) criteria for diagnosis, FIRE him on the spot!
It is not only controversial,it is a huge disservice to Tens of Thousands
sufferers of the fastest growing infectious disease today!!
Deal only with competent LLMDs and trust only reputable reference Labs like IGENEX. Ask for a complete Borrelia and Co-infections Panel.
Please do not allow any guess work, internal medical policies, procedures and or ignorance deprive you from getting back your Health!
Wishing you well!
Niko
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