posted
I wanted to share this with others....for any further scientific insight or just for information.
Quick summary of my situation/email to them so you can appreciate their response:
I have been sick for about 2 years and after having seen every specialist and having every test known to medicine, I finally had a positive IgM Western Blot (according to CDC standards). My ELISA was negative. 2 weeks into treatment, I felt worse than ever and ended up in the hospital for a week (suspected Herx). 6 months later, I had another WB performed. Bands 23, 39 and 41 for IgM all positive. 41 and 51 were positive for IgG only.
I do not have 'traditional' Lyme symptoms so it is hard to make a clinical diagnosis for me.
Of course there are all kinds of interpretation regarding what these test results mean. I wanted to try to better understand the CDC's rationale for discounting this as Lyme Disease at all. I don't feel they are 'out to get us' and wanted to understand their scientific rationale (even if wrong).
Here was their response:
"Hello,
As you likely are aware, recommendations state that IgM along should never be used after the first 4 weeks of illness. This is because IgM tests have a relatively high likelihood for false positives.
They should never be used alone, without an ELISA first, even in the first four weeks of illness, because of this reason. IgM blots should really be used by physicians who really understand all of the caveats that go along with them.
The reason for the high likelihood of false positives-IgM antibodies, the first to respond to an infection, are less specific than those that are created later (IgG). For this, there is a potential for cross reactivity with antigens other than those on the surface of B. burgdorferi. For example, the 41kDa flagellin protein has epitopes similar to many epitopes in our own tissues, including in the synovia and myocardial tissues.
Low level reactivities to 41kD and 23kDa (OspC) have been observed in persons presenting with other infectious and non-infectious illnesses, including rheumatoid arthritis, infectious mononucleosis and lupus. Many of these same bands are also on the IgG test.
Note that if your IgM reactivity was specific to these bands, and not cross reacting, and given the time that you have been ill, these same bands would be reactive on the IgG blot, whereas only the 41kDa is, which is reactive even in many healthy individuals.
For more information, see the "Diagnosis of Lyme borreliosis" review in Clin Microbiol Rev. July 2005 issue, buy Aguero-Rosenfeld et al.
Jarish-Herxheimer reactions occur in a small portion of Lyme disease patients when they begin treatment, but they are usually not very severe, and occur within the first 24 hours of treatment. The fact that you were hospitalized is very concerning, and may be an indication of inappropriate treatment, which could be very harmful.
The comments made by doctors are also very concerning, and are not based on any scientific evidence (they are referring to a doctor suggesting I still had an active infection to Lyme or another Lyme infection).
We would like to encourage you to seek care from a physician, preferably one associated with a University, who can help to find a cause and/or relief for your symptoms.
Good luck",
Posts: 561 | From mass | Registered: Jul 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
What on earth is wrong with them?
"Jarish-Herxheimer reactions occur in a small portion of Lyme disease patients when they begin treatment, but they are usually not very severe, and occur within the first 24 hours of treatment."
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Of course there are all kinds of interpretation regarding what these test results mean. I wanted to try to better understand the CDC's rationale for discounting this as Lyme Disease at all.
It dosent matter what CDC says except that it is CDC criteria is for tracking the disease Not for diagnosis.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Hmmmmm sorry, but I agree to a point, with the CDC. There are way to many people claiming they are Herxing on this (even Vitamin D!!!!!) and that when they have absolutlely no proof if it is a real Herx. Don't you think these research Doctorsat the CDC know a little about JH reactions?
ONE of my LLMD's, Dr. D.C., President of ILADS told me this years ago. He also understands how many proteins, etc., can react with a WB test, and that, yes, not all testing is accurate.
For this very reason w need BETTER TESTS, that have higher accuracy.
How can anyone dispute the reasons given if one does not have clinical or research experience in the testing arena?
Reactions to the drug itself are the probable cause of most of our hard times...proof?
Easy.
Simply look at the side-effects lists provided by the manufacturor. Good grief, the list is enough to make anyone run for the hills.
I have NEVER had a Herx in 14 years. I have felt worse, but not soon after using a med, and not significantly different that I felt before the med. IN FACT, I have felt suddenly worse when I was NOT taking any meds at all!
I was actually HERXING on water...or air.
Of course some of us have herxes, but there is absolutely no way (according to the same Doctor) of knowing if it really a Herx, or just a reaction to the drug.
Right now, with our state of the art...we have no way to know the difference between Herx and drug reaction. Any one that says we have a proven way to know the difference, has no proof to back up the assertion. This too was stated by my Doctor...who is on OUR side.
Medical drugs can and do produce terrible reactions in people...in fact, some people die from medical drugs.
Yes, I too am sick of being sick...14 years in fact.
I am going to get tested for Viruses, and I urge EVERYONE to DEMAND the same from their Doctors.
Peace, Love and Wellness, JRW
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
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posted
I agree with JRW that until we have better methods or a better understanding of this disease, there are many unknowns here.
With regard to my test results, I don't have RA or Lupus or Syphilis or Mono, etc. That combined with the fact that ALL 3 bands came up positive....I don't know, what are the chances of a cross-reaction/false positive?
Hopefully time will tell what is happening here. For me, I'll repeat my WB at some point and see if I get 5 IgG bands.
I know there are a number of others out there with similar test results (i.e. only IgM positive response) and it sure would be nice if we could figure out what is going on.
Posts: 561 | From mass | Registered: Jul 2007
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jamescase20
Unregistered
posted
maybe a coinfect is taking over after killing some lyme?
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sorry, but this makes me really SICK.
I have NEVER heard of ANYTHING that could make band 39 positive, despite occasional cross-reactions on other bands.
It looks to me like they are saying:
"We refuse to accept even our OWN impossibly restrictive CDC positive test result."
"Come to think of it, we won't accept ANY western blot finding that wasn't first preceded by a positive ELISA." (Despite the Johns Hopkins study proving ELISA misses 75% of late lyme cases.)
"We won't accept any bands on IgM that aren't also positive on IgG." (Totally false and stupid and without basis.)
"We don't like LLMD's and are very concerned that one would dare tell you that you might have lyme based on this CDC positive result. Good heavens! Stay away from him and go to a university, such as where our beloved Dr. Steere, et al. practice."
Complete and utter denial.
I appreciate your sharing this with us.
However, considering the positively STUNNING rate of false negatives in the ELISA test (see above), how they can still cling to that sinking ship is beyond me. They may as well come out and say, "We know that around 75% of you will be misdiagnosed, but we don't really care."
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Not sure where I read it, but I thought there was some early literature by the ducks that the 41 band IS specific for Lyme.
Posts: 13116 | From San Francisco | Registered: May 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Sorry to keep "replying" to myself but this just sizzles me.
Tom Grier says:
"... the presence of the single band 39 kda is specific for only Borrelia burgdorferi, and no other bacteria yet discovered."
Tom Grier knows more about lyme than anyone at the CDC.
Idiots.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Robin123: Not sure where I read it, but I thought there was some early literature by the ducks that the 41 band IS specific for Lyme.
Well, kind of, but not. Here's why:
1. 41-kDa shows up almost ALL the time in newly infected people. It's one of the first to show up. So in that sense, it's a good marker.
2. However, it does cross-react with other infections, so in that sense it can't be said to absolutely mean lyme.
Whereas, on the other hand, 39-kDa does not cross-react with ANYTHING, EVER. (Or at least nothing discovered thus far in medicine/science.)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I'm new here and diagnosed in June. My doctor and I think I've had Lyme for about seven years. I was put on five weeks of doxycycline, a common antibiotic that I've taken for other things in the past, and I too became so ill with the herx reaction that my doctor sent me to the hospital for an IV. After the first week it was fine and when my next course of tetracyclines started the herx was not nearly as bad, but still there. How do you explain that?
Posts: 12 | From Maysville, KY | Registered: Jan 2008
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bettyg
Unregistered
posted
ks, thanks for posting their response.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Kentucky Betty: I'm new here and diagnosed in June. My doctor and I think I've had Lyme for about seven years. I was put on five weeks of doxycycline, a common antibiotic that I've taken for other things in the past, and I too became so ill with the herx reaction that my doctor sent me to the hospital for an IV. After the first week it was fine and when my next course of tetracyclines started the herx was not nearly as bad, but still there. How do you explain that?
Hi Betty. It's my opinion that the initial treatment (usually the dreaded doxy) is the hardest. That's when you have the MOST bacteria. Borrelia burgdorferi produces toxins when you kill it off which make you feel pretty sick initially.
Once your load of bacteria is reduced, subsequent courses of antibiotics may seem "gentler."
That doesn't mean every last spirochete is killed. It just means the numbers are hopefully greatly reduced.
Most people WITHOUT lyme can take an antibiotic (such as for a cold or bronchitis) and not feel ANYTHING from it, really -- except hopefully better!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I read the CDC's response and thought......
Sheesh! What a load of horse manure!
I only had band IgM 23 show positive (Quest not Igenex).
I tested negative for everything else including RA, Lupus, etc.
Politics, cover-ups and a failure to Step up to the epidemic proportions of this disease
Certainly make for very strange bed-fellows.
Consider the source of the letter and the (lack) of intent and then....
Get thee to a LLMD and let them tell you what is going on.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I can say, without doubt, that my 1st Herx hit me sometime early in the day, following having increased pm Doxy dose to bactericidal levels.
It lasted close to a week and then cycled monthly, which would have corresponded to the "ketes" coming out to try to reproduce. It was shorter in duration and severity with each cycle as their numbers decreased.
It was a VERY odd symptom that I had not experienced before & definitely neurologically related. LLMD explained Herxs to me, when I told him what had happened at the visit following the first one, after he finished chuckling a little. (IT was REALLY weird )
It followed in the exact pattern he had explained so it was sort of neat to be able to know exactly what was going on & what to expect. He was absolutely, positively right in his explanation to me of how Herxes occur.
I still don't understand why when they stopped I started going backwards again. Right now we're back to looking for co-infections again.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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KS...Read the entire link above, including the responses, where you will find tons of info on all the bands. ------------------
FROM THE ABOVE LINK, WRITTEN BY DR C OF MO:
"Patients often tell me that other physicians they have seen use the CDC recommendations. This is unfortunate, in my opinion, since these physicians are not in the business of disease surveillance, like the CDC is.
But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.
One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Robin123: Not sure where I read it, but I thought there was some early literature by the ducks that the 41 band IS specific for Lyme.
Read the responses to Dr C's WB explanation. The info you remember is there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
KS...I got knocked offline right in the middle of my responses to you!
I wanted to add that there is NO NEED to wait until you have 5 positive bands show up!!!
If you have ONE lyme specific band, you have LYME!
Band 39 on the IgM is proof positive.
Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all. ... Dr C of MO
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Ok....so 39....I do not show + nor does my daughter for 39. Nothing at all IgG or IgM. Is that significant????
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
All the disagreement about "Lyme Disease" testing, existing, etc. makes a lot more sense if you stop focusing on borrelia! CDC & most doctors are talking about Bb specifically, not cell-wall-deficient, lister, blebs, coccoids, cystic, or whatever you want to call all the other forms/mutants. Our bodies are also a "DNA soup" of sorts, so even thinking in terms of a single species really makes no sense.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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