Due to all the non working antibioitcs that I have had to shove down my throat I have gastritis. I cannot take all the rat poison that my LLMD, whom I have accused of being a distant relative of Lucretia Borgia, has insisted that I inflict upon the poor and long suffering Burgdorferis, Myrtle and Boris and their 18, 888, 000 children, grand children, great grand children, great great grandchildren, great, great, great, grandchildren, etc, etc. I have also inflicted them upon my poor long suffering self and have exposed all the holes and love nests that Boris and family have dug into my stomach. Painful.

So now I go into my regular primary care physician, who is very sceptical about all this lyme business. He thinks that I am crazy and has said as much. Why do you go to this man, you may ask? Have you tried to find an even half way decent duck in SC lately? He did an endoscopy and wonder of wonders I have gastritis. So, today in the follow up vist, to that happy event, he orders that I have a lyme serology. I then discover that the lab that is going to do this serology, you guessed it, is none other than Quest Diagnostics, which I am told is just about the worst lab for that sort of thing in the US of A.
Is this true?. I insisted to the lab technician in his office-whom I have known for twenty years- that they use IGENEX and she agreed to contact my LLMD. I did a mad dash for life and brought over some info and discussions of Western Blot tests. The Quest quacks were going to do a screening test and then if needed a WB. Oh brother. I just wonder what the results will be. Bets, anyone?

So sorry to hear of your troubles, I would be very frustrated too.

I don't know if Quest is the worst lab in the US? I know they are not the best for lyme tests.
I think IGeneX is one of the best labs for lyme testing, and I would want my tests done there also.

What is the "Chinese Curse"? It sounds bad?

I wish I had some suggestions for you.

Hang in there OK?

Looks like you have been royally ducked...

AGAIN!

Sorry 'bout that!

My suggestion..

Call tonight and leave a message... then follow up in the morning with another call to confirm they understand and KNOW you are serious.

Call the doctors office who ran the test and tell them to contact the lab and cancel the test. Tell them it will NOT be paid for. You need not give any reason at all. Just YOUR wishes. And be SURE to say it will NOT be paid for.. cause there... in that system..

Money talks... and ONLY money talks.

Then call Quest.. and write them a follow up note.. and tell them the same thing.

You are under NO obligation to have tests run that you don't want. You can offer to pay the doctor for the "draw fee" for drawing your blood.. but INSIST on the test NOT being done.

In this circumstance the best way to have it cancelled is to tell the lab that NO money will be paid for the test. Tell themn to discard the sample and you don't... repeat .. DON'T want the test done.

You DO have a problem here because the test will be negative. I am so sure of it, that if it isn't negative.. I will stand naked in the corn field with a tomato on my head.

Oh.. that's right.. I did that today!

Anyhow... A negative test will provide ammunition for not only the insurance companies to fight you... but your disability folks, as well... and the DUCK who is trying to prove you have ABLS. (Anything But Lyme Syndrome)

A negative test will be something you have to prove to everyone with NO knowledge of the "duck system" that it was wrong.. and it won't make sense to anyone... no matter how hard you try to explain.

The best results you can get at this point is NO results.

And next time.. before you agree to be poked... be sure to think first about the pokey... and the poke results in the hands of the ducks.

Otay goof ball?

If they need a reason...

Tell them that Quest is using testing standards that were set up for REPORTING PURPOSES ONLY... NOT diagnostic purposes... and you don't need the test because you already KNOW you have Lyme... and you ain't paying for a government study!!

And..

If they have a problem with it.. tell them to contact the CDC in Atlanta to get the PROPER testing procedures information... and once they do that... give you a call.

PS. Hey Beverly.. GOOD TO C YOU!

I see the dilemma. So here goes.

This might seem as a stupid question... but are you SURE you have Lyme? (this is what the people that you will face are asking anyway) How do you know? and are you sure that's all you have?

I ask this question because lyme imitates a lot of diseases but what about the other way around? ie. a lot of diseases immitate Lyme

There are a LOT of diseases that result in neurological problems similar to those encountered in Lyme. All of these are diagnosed clinically, typically after they get really bad.

As far as disability goes, one can be disabled with a neuro degenerative disease just as well as Lyme, In fact Lyme is a member of the neuro degenerative disease group. The symptoms can be the same and in many of these diseases and in most there is NO treatment available.

I fully understand that LLMD and MD's in general will do what ever they can in order to improve the quality of life of their patients, unfortunately, Lyme is purely a clinical diagnosis in many cases,if there is any indication at all of the presence of the Lyme infection, one is compelled to try to treat it, given the destructive nature of the disease.

In many cases the treatment works, in some cases, the treatment does not work.

(Note that this differs considerably from the main stream HMO funded medical community in that the most cost effect method of treating Lyme is to never diagnose it... there are a number of cost efficiency studies to this effect).

If treatment does not produce ANY result, one has to face the fact that it may in fact not be Lyme that is the dominant cause of the symptoms. And while it may have been present, it may only have been a additive factor to a pre-existing yet degrading condition.

So here are a few questions that you should answer prior to your disability review.

1. Has there been any diagnostic imaging that shows an organic problem. Things like MRI, SPECT, MRA or MR spectroscopy. If these where done, for sure they will not be conclusive but they can be highly supportive of a problem. If someone can see it in black and white then it is hard to argue.

2. Has there been any tests that have been abnormal, in particular, one that appears to show that a degenerative problem exists. One such test is the appearance of 14-3-3 protein in the CSF. This is a marker for a wide, range of degenerative processes that affect the brain. The presence of this protein is a very clear sign that something is very wrong, even if the cause cannot be identified.

3. Do any tests show problems with motor function, nerve conduction, vision, or any other quantifiable measure that has been tracked over time that can be used to indicate a degenerative process? If so, then this can support a degenerative condition.

4. Has there been any neuro psychiatric testing that shows significant deficits or the progression of those deficits?

5. What where the result of your lyme serology? This again is only supportive as it is common for many to believe there are both false positives and false negatives.

6. Given the lack of response to aggressive antibiotics, have other causes been considered by any of the Doctors that you have seen?

7.Your primary care physician should have a good record of your decline over time. Does the level and speed of degradation align with any other syndroms that have not been investigated?

As I noted above there are many many diseases that can cause similar symptoms to Lyme. It may be a easier to attribute the disability to a different disease process,even if it is not exactly known what it is. This approach does not have the stigma of Lyme associated with it. As an example there are a number of frontal lobe dementia's that mimick Lyme, all of with are extremely debilitiating.

Depending on the above informatin as well as what other records and reports that you might have, a neurodegenerative disease of unknown cause... ie a neurodenerative syndrome might be a better accepted diagnosis when you are applying for disability.

Once this hurdle is crossed, then you can concentrate on determining the cause of the degeneration, keeping in mind that it may never be found or it may be lyme related.

I hope nobody dumps on me because of this post, but the way I figure, this is the easiest way to solve this particular problem given the circumstances. At least you can fight another day rather than go down in your customized razor wire canoe.

quote:

---

Originally posted by david1097:
Hello

I see the dilemma. So here goes.

This might seem as a stupid question... but are you SURE you have Lyme? (this is what the people that you will face are asking anyway) How do you know? and are you sure that's all you have?

I ask this question because lyme imitates a lot of diseases but what about the other way around? ie. a lot of diseases immitate Lyme

There are a LOT of diseases that result in neurological problems similar to those encountered in Lyme. All of these are diagnosed clinically, typically after they get really bad.

As far as disability goes, one can be disabled with a neuro degenerative disease just as well as Lyme, In fact Lyme is a member of the neuro degenerative disease group. The symptoms can be the same and in many of these diseases and in most there is NO treatment available.

I fully understand that LLMD and MD's in general will do what ever they can in order to improve the quality of life of their patients, unfortunately, Lyme is purely a clinical diagnosis in many cases,if there is any indication at all of the presence of the Lyme infection, one is compelled to try to treat it, given the destructive nature of the disease.

In many cases the treatment works, in some cases, the treatment does not work.

(Note that this differs considerably from the main stream HMO funded medical community in that the most cost effect method of treating Lyme is to never diagnose it... there are a number of cost efficiency studies to this effect).

If treatment does not produce ANY result, one has to face the fact that it may in fact not be Lyme that is the dominant cause of the symptoms. And while it may have been present, it may only have been a additive factor to a pre-existing yet degrading condition.

So here are a few questions that you should answer prior to your disability review.

1. Has there been any diagnostic imaging that shows an organic problem. Things like MRI, SPECT, MRA or MR spectroscopy. If these where done, for sure they will not be conclusive but they can be highly supportive of a problem. If someone can see it in black and white then it is hard to argue.

2. Has there been any tests that have been abnormal, in particular, one that appears to show that a degenerative problem exists. One such test is the appearance of 14-3-3 protein in the CSF. This is a marker for a wide, range of degenerative processes that affect the brain. The presence of this protein is a very clear sign that something is very wrong, even if the cause cannot be identified.

3. Do any tests show problems with motor function, nerve conduction, vision, or any other quantifiable measure that has been tracked over time that can be used to indicate a degenerative process? If so, then this can support a degenerative condition.

4. Has there been any neuro psychiatric testing that shows significant deficits or the progression of those deficits?

5. What where the result of your lyme serology? This again is only supportive as it is common for many to believe there are both false positives and false negatives.

6. Given the lack of response to aggressive antibiotics, have other causes been considered by any of the Doctors that you have seen?

7.Your primary care physician should have a good record of your decline over time. Does the level and speed of degradation align with any other syndroms that have not been investigated?

As I noted above there are many many diseases that can cause similar symptoms to Lyme. It may be a easier to attribute the disability to a different disease process,even if it is not exactly known what it is. This approach does not have the stigma of Lyme associated with it. As an example there are a number of frontal lobe dementia's that mimick Lyme, all of with are extremely debilitiating.

Depending on the above informatin as well as what other records and reports that you might have, a neurodegenerative disease of unknown cause... ie a neurodenerative syndrome might be a better accepted diagnosis when you are applying for disability.

Once this hurdle is crossed, then you can concentrate on determining the cause of the degeneration, keeping in mind that it may never be found or it may be lyme related.

I hope nobody dumps on me because of this post, but the way I figure, this is the easiest way to solve this particular problem given the circumstances. At least you can fight another day rather than go down in your customized razor wire canoe.

---

Please note that I is not suggested to accept the diagnosis of degenerative disease and leave it at that, but rather is is very likely that such a diagnosis would be better accepted since there is no way to disprove it, provided that it is actually occurring.

The problem with Lyme is that many see it as a self diagnosed and self promoted disease. you can't test for it, you can't prove you have it, it stops you from working etc. but you can treat it. As a result, given all the things that it can mimic, it can be viewed as a disease of choice. A choice for many reasons, including a wish to be on disability. ...
Unfortunately this is the fact, and the main stream medial community has it tattooed onto their brain.

On the other hand, neuro degenerative disease is something that nobody would want to have (even though Lyme is one) and more importantly, it is diagnosed as a syndrome which has no yet understood cause. No one can prove you don't have it.
In comparison, in the case of Lyme, many believe that you can easily prove that you don't have it. This is the problem.

If there is objective evidence of,(and this is a good reason to regularly see a PCP so that you have a legal record of progression) of degradation that is debilitating as well as other observations like imaging, traffic accidents etc, then there is a pretty good case that the situation is indeed bad and getting worse. I think this is a lot easier to prove than to prove you have a disease that you "can test for" and that "can be treated with 4 weeks of IV to effect a cure".

In many places you cannot even be treated for Lyme even if you have the symptoms and positive serology and supporting imaging. You can however be given a diagnosis of a neuro degenerative disease, which has known debilitating sequae with not much more than a history as well as a neurological exam. The reasons for this range from lack of education to ignorance to cost savings, but we are all familiar with this issue.

As far as accepting the diagnosis, I would say never do that as long as you are able to search out the cause. All the neuro degenerative diseases with the exception of a very few are in fact syndromes for which the root cause could be anything. Atypical Lyme may be the cause but this search and proof should be done after you are able to sustain your self, through disability if need be.

From the original post it looks like this is the immediate problem and it is a lot easier to go with the flow rather than try to paddle up river.

Hope this clarifies my post.