Lyme testing

[beaverfury]

It's important not to conflate the 'alternative Lyme' testing and treatment with all Lyme testing and treatment. We do have good evidence showing what a serious diseaseLyme is, and evidence which supports the use of some testing and treatment for it.

It is important to use the best available testing - that which has supporting evidence showing it's validity, reliability and specificity, at her than alternative testing which has no evidence of value.

I can agree with all of this.

I think it's also important to differentiate between the sensitivity of two tiered Elisa/immunoblot testing in early and late stage lyme.

The sensitivity of testing in the early weeks of illness is quite pathetic, but often reaches 100% in later stage lyme with arthritic symptoms,which can only take a matter of months.

With the complexity of reading and interpreting the IgG and IgM responses beyond the average patient (me), the quality of your diagnosis and treatment will in large part depend on the quality of your physcian.

There are at least some loosely established guidelines in reading these IgG, IgM bands.

http://www.ncbi.nlm.nih.gov/pubmed/18532885

http://jcm.asm.org/content/33/2/419.long

http://informahealthcare.com/doi/abs/10.1080/07853890500431934

http://cid.oxfordjournals.org/content/47/2/188


As to the effectiveness of newer tests i have no idea. They may turn out to be more accurate than Elisa/Immunoblot.

They are not 'alternative' in the batik tie-dyed, incense burning sense. They have science behind them.
But as Esther rightly points out, they do not yet have the validity of evidence that the Elisa/Western immunoblot testing has.
C6 peptide Elisa
http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2004.01041.x/full
http://www.ncbi.nlm.nih.gov/pubmed/23592827
Oxoid-IDEIA
http://www.ncbi.nlm.nih.gov/pubmed/24072766

N.B My opinions on borrelia testing are formed by googling.

 

[beaverfury]

Even for those patients with a confirmed diagnosis of Lyme (by 'mainstream' testing) that suffer from ongoing symptoms after normal treatment, there is only very weak evidence of value for the long-term treatments available (generally negative results with one or two weak positives I think).
.

Can't agree with that.

Roxithromycin in the treatment of Lyme disease--update and perspectives.

http://www.ncbi.nlm.nih.gov/pubmed/7782115

http://www.ncbi.nlm.nih.gov/pubmed/8798283

Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.

http://www.ncbi.nlm.nih.gov/pubmed/22922244

A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/23091568

A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy.
http://www.ncbi.nlm.nih.gov/pubmed/17928580

 

[barbc56]

Ah, good, someone brought up validity. I haven't been able to post and it's late so hopefully will be able to tomorrow. I think validity is an important issue here and needs to be addressed.

Someone also asked what's the harm with taking long term antibiotics. If you have lyme, the science shows that except in special cases such as untreated lyme or the 15% who may need more than one round of an abx , they don't help in the long run, if given for a long time and other treatments are needed. Unfortunately the prognosis is still not that good. Going to an LLMD who focuses on lyme, means there is a possibility of missing what is really causing the symptoms. And yes, Lyme disease is real and debilitating.

Amy Tan, the author, came down with Lyme and was seriously affected to the point of having hallucinations. She wrote about her experiences but I can not remember the name of the book. Great read, though.

Has anyone gone to an LLMD with vague (but serious) symptoms like ours, without getting a diagnosis of Lyme? I don't know but it would be an interesting to find out.

 

[barbc56]

Can't agree with that.

Roxithromycin in the treatment of Lyme disease--update and perspectives.

http://www.ncbi.nlm.nih.gov/pubmed/7782115

http://www.ncbi.nlm.nih.gov/pubmed/8798283

Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.

http://www.ncbi.nlm.nih.gov/pubmed/22922244

A reappraisal of the u.s. Clinical trials of post-treatment lyme disease syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/23091568

A randomized, placebo-controlled trial of repeated IV antibiotic therapyforLymeencephalopathy.
http://www.ncbi.nlm.nih.gov/pubmed/17928580

But, the populations used in these studies had lyme as defined by the CDC. This is comparing apples and oranges.

 

[beaverfury]

But, the populations used in these studies had lyme as defined by the CDC. This is comparing apples and oranges.

Yeah. It's quite difficult to test effective lyme treatments on patients that don't have lyme.

Let's not do a back and forth on 'lyme treatment'. It's another issue, and could make this thread incredibly long.

I wanted to rebut Esthers statement with the above links. I promise, i will stick to' lyme testing' in future.

 

[roxie60]

Some Lyme, CD57 info from interview of ILADS doctor who treats CFS patients

http://www.townsendletter.com/July2009/idsa0709.html

 

[vamah]

Some Lyme, CD57 info from interview of ILADS doctor who treats CFS patients

http://www.townsendletter.com/July2009/idsa0709.html

This looks interesting and I will have to give it a read when I am feeling more awake. Do you know if the doctor profiled is still practicing in virginia? He would not be far from me.

 

[Ema]

This looks interesting and I will have to give it a read when I am feeling more awake. Do you know if the doctor profiled is still practicing in virginia? He would not be far from me.

It looks like he is:

https://secure.intmednova.com/portal/default.aspx

You've also got Jemsek in Georgetown that deals with Lyme and Jaller in Rockville. Jaller has written a great blog on Lyme for about 5 years that is always informative.

http://www.drjaller.com/

http://www.jemsekspecialty.com/

You have lots of good choices in DC!

Ema

 

[Esther12]

Can't agree with that.

Thanks for that/them. I was a bit out of date (or misrembered), but still, even for those with clear 'mainstream' evidence of Lyme disease, it sounded as if the benefits of long-term treatment for on-going symptoms tended to be limited, and far from the dramatic results which tend to be seen with initial antibiotic treatment.

Not that you were saying otherwise, but just to be clear, this is not any sort of evidence for the long-term treatment of those lacking in validated evidence of Lyme infection.

 

[roxie60]

Anyone onw know of an LLMD near central Illinois?

 

[Ema]

Anyone onw know of an LLMD near central Illinois?

I will send you a PM.

 

[roxie60]

thanks for the PM.

 

[roxie60]

I'm going to post this question under Lyme thread but this is what baffles me, how I can feel semi ok 1-3 hours and then feel my self decline in function/health as if a switch is turned on and symps start increasing. I know others expereince this with CFS/ME/CFIDS but is this also the case with untreated Lyme - can one feel ok (never 100%), more functional for awhile and then quickly start having symps that can go from mild to severe?

 

[SOC]

I'm going to post this question under Lyme thread but this is what baffles me, how I can feel semi ok 1-3 hours and then feel my self decline in function/health as if a switch is turned on and symps start increasing. I know others expereince this with CFS/ME/CFIDS but is this also the case with untreated Lyme - can one feel ok (never 100%), more functional for awhile and then quickly start having symps that can go from mild to severe?

This happened to me before I was treated for POTS/low blood volume. Now with Florinef in the morning and verapamil (for tachycardia) throughout the day, I don't get that switched off feeling after being up for a few hours. I do still fade slowly starting midafternoon, but it's not the same. I can do quite a bit more during the day now.

 

[Sushi]

I'm going to post this question under Lyme thread but this is what baffles me, how I can feel semi ok 1-3 hours and then feel my self decline in function/health as if a switch is turned on and symps start increasing. I know others expereince this with CFS/ME/CFIDS but is this also the case with untreated Lyme - can one feel ok (never 100%), more functional for awhile and then quickly start having symps that can go from mild to severe?

My experience is similar to SOC's--it was OI for me that caused sudden worsening of symptoms. For instance, though my OI is much better, yesterday I was standing for about 4 hours (and some slow walking) and very suddenly I couldn't stand for one more second and had to sit down on the ground and kind of pant for a while, eat some potato chips for salt and drink down an electrolyte solution.

I would not normally be so "dumb" as to stand that long, but circumstances yesterday got me into that situation. After recovering a bit and driving home, I stayed on the couch with an FIR mat for the evening and had pretty much recovered by bedtime.

Sushi

 

[vamah]

I'm going to post this question under Lyme thread but this is what baffles me, how I can feel semi ok 1-3 hours and then feel my self decline in function/health as if a switch is turned on and symps start increasing. I know others expereince this with CFS/ME/CFIDS but is this also the case with untreated Lyme - can one feel ok (never 100%), more functional for awhile and then quickly start having symps that can go from mild to severe?

I have a friend with lyme who would have days feeling absolutely 100%, followed by days feeling awful. I think that some cfs symptoms, like pem, can also happen with lyme. That's just my opinion tho.

 

[SOC]

I have a friend with lyme who would have days feeling absolutely 100%, followed by days feeling awful. I think that some cfs symptoms, like pem, can also happen with lyme. That's just my opinion tho.

I wonder if it's the OI that is common in ME/CFS and Lyme. Both could be affecting the endocrine system in similar ways, perhaps?

 

[roxie60]

Anyone with Lyme also have thyroid issues or are they separate issues? Reason I'm asking is my company just made it clear th only reason I was approved for disability was because of the Endo's dx and the labs indicating a thyroid issue. And since they are pushing for info each month and only approving disability month by month that says to me that they are making their decision once again on lab results, so I have been taking Synthroid so it is quite likely the FT4 and TSH I just had done last week will show improvement but that doesn't equate to instant health but I'm sure they will care not and withdraw disability as soon as labs are in range. So I am asking the question about Lyme and thyroid since I'm wondering if there is a relationship....

 

[SOC]

Anyone with Lyme also have thyroid issues or are they separate issues? Reason I'm asking is my company just made it clear th only reason I was approved for disability was because of the Endo's dx and the labs indicating a thyroid issue. And since they are pushing for info each month and only approving disability month by month that says to me that they are making their decision once again on lab results, so I have been taking Synthroid so it is quite likely the FT4 and TSH I just had done last week will show improvement but that doesn't equate to instant health but I'm sure they will care not and withdraw disability as soon as labs are in range. So I am asking the question about Lyme and thyroid since I'm wondering if there is a relationship....

I don't remember... do you have a Lyme dx?

 

[beaverfury]

A good roundup of lyme diagnostics. Well worth going over if you need a clearer picture of some of the issues. http://www.ncbi.nlm.nih.gov/books/NBK57026/