I am in one of the fights of my life while being very sick with chronic Lyme. I believe it is in my brain and a lot of times I feel like giving up.
My disability insurance provider wants to cancel my claim because they have a Doctor who has never seen me state I probably never had Lyme Disease and if I did I was cured in May 2003 with the first course of antibiotics.
The Doctor stated my test results in May 2003 did not meet the CDC requirement. I think he is confused about 5 bands for IGG and two bands for IGM. I have the two bands in IGM and still do. I do not meet IgG CDC requirements.
They have schedule an Independent Medical Exam with a local ID next week. I have no option on that.
This board has been so informative so I thought I would ask for some help in wording of a document I am sending to the insurance company with my most recent test results.
Here are my August 2007 IGENEX results after being off antibiotics for two months:
IFA, B Burgdorferi G/M/A 1;80 Titer (= or > 1:80 POSITIVE)
Western Blot August 2007 Western Blot May IFA, B Burgdorferi G/M/A 1:80 Titer (= or > 1:80 POSITIVE) IgM positive (CDC)with bands 18 +, 31 ++, 34++, 39 +, 41 + (I believe 31, 34 & 39 are specific to Bb) IgG negative with bands 31 IND, 34 IND, 41 ++
Here are my May 2003 results: IgM positive with bands 18 +, 31 ++, 34++, 39 ++, 41 IND IgG negative with bands 41 ++, 58 IND, 66 IND
Here is what I am stating in laymen's terms. I need validation the statements of why my IgG does not indicate Lyme and the IgM continues to indicate Lyme after four years. I have not been reinfected. I have been under the care of an LLMD since May 2003 (he is one that got whacked and is moving soon).
Here is the text:
After four years of antibiotics I still test positive for an acute infection (see the IGM results attached). This is CDC positive on the IgM which reguires two bands. The IgG requires five bands which may be where Dr. xxxxxx is confused (Doc who never saw me). Either test indicates Burgdorferi (Lyme bacteria). The IgM indicates acute infection and the IgG indicates an infection active at present or at some time.
A negative IgG and a positive IgM (me) indicates the body's immune system is unable to form long term antibodies to fight the infection. Perhaps Dr. xxxxxx (local ID doing IME) will have some insight and suggestions for me. Please include the attached tests in my medical records. I will ensure Dr. xxxxxx has a copy on September 13.
Also, if you have additional suggestions on what to add to this that would be GREAT!
BTW I live in South Carolina and got it here.
Posted by Lymetoo (Member # 743) on :
"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. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
Posted by Lymetoo (Member # 743) on :
Can't you also explain how this has affected your life? Tell them all the things you are unable to do. How it affects you mentally. Whether or not they believe you have an existing condition is not as important as how this "old" infection is continuing to affect your life.
There are others here who would be better at helping you on this.
I'm sure they'll be along soon!!
Posted by Aniek (Member # 5374) on :
Does it need to be a Lyme diagnosis for your disability insurance to cover you? It might be easier to get the coverage continuing on one of those diagnoses we all try to avoid, like fibromyalgia or even post-Lyme syndrome.
I would never say accept one of these diagnoses as related to treatment. But if it will get you disability coverage, then maybe it would help.
So, if the ID duck is no help to you, see if they will take a diagnosis from a pain specialist or other doctor who could confirm that you are disabled no matter what the actual diagnosis is.
Posted by sixgoofykids (Member # 11141) on :
I agree, go for a fibro or chronic fatigue diagnosis.
The thing is, the CDC requires the IgG to be positive if you've had it for more than six weeks.
All of us here know you still have it ... but you do not meet the CDC criteria since it's been more than 6 weeks. They say if you really had Lyme you would be showing IgG antibodies.
So, no use arguing with a doctor who expects you to meet CDC criteria ... just be sure you're seeing someone different for treatment!
Posted by abacomah (Member # 5633) on :
quote:Originally posted by Lymetoo: Can't you also explain how this has affected your life? Tell them all the things you are unable to do. How it affects you mentally. Whether or not they believe you have an existing condition is not as important as how this "old" infection is continuing to affect your life.
There are others here who would be better at helping you on this.
I'm sure they'll be along soon!!
Thanks Lymetoo and Aniek for such quick responses.
I have been fighting this for three months now because I know they are trying to use the Doc's (who has never seen me) evaluation.
I have three Doctors that see me that have written that I cannot work including my eye Doctor.
I have written bunches to them on how it has affected my life and they are not listening.
Bettyg directed me to disinissues and that has been helpful. I meet with my lawyer on Wed.
I took the risk on the IGENEX tests knowing that it might come back negative but lucky for me (yeah right) it is positive still.
I am trying to get them to listen on the fibromyalgia and Sjogren's (my eyes are so dry I can't read long without pain).
So I am putting together this text and sending it to them and taking it to the ID next week.
Lymetoo, the bold print you posted will be good in the previous post.
Isn't it enough they attack our Doctors? Now they are attacking the patients who are suffering. I do feel like I am slipping very fast.
Posted by abacomah (Member # 5633) on :
quote:Originally posted by sixgoofykids: The thing is, the CDC requires the IgG to be positive if you've had it for more than six weeks.
All of us here know you still have it ... but you do not meet the CDC criteria since it's been more than 6 weeks. They say if you really had Lyme you would be showing IgG antibodies.
I didn't know the CDC expects the IgG to go positive after six weeks. That really is not good for us with chronic cases. Thanks for pointing that out.
I thought the IgM indicated acute bacteria reproducing. How does the CDC explain an IgM being positive years after treatment? I know the answer to that ... they don't have too.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by abacomah: How does the CDC explain an IgM being positive years after treatment? I know the answer to that ... they don't have too.
Exactly ... they make the rules here.
Posted by Lymetoo (Member # 743) on :
Have your lawyer demand that you be SEEN by a doctor. How can a dr diagnose you without seeing you? So much for a "clinical diagnosis" which the CDC says is valid!!
Posted by Lymetoo (Member # 743) on :
^ any more suggestions ?
Posted by abacomah (Member # 5633) on :
quote:Originally posted by Lymetoo: ^ any more suggestions ?
Thought I would bring this to the top one more time to see if anyone else had any suggestions on literature to use to explain the significance of IgM still being positive after so many years of treatment. (Thanks Lymetoo for Dr. C's article)
So in my case, as I suspect with others with chronic Lyme IgG antibioties are just not formed as they should be to fight the disease.
Any additional help would be greatly appreciated. Thanks.