Lyme testing

[Tito]

I would be tempted to ask: do ME/CFS patients with a positive Lyme test get cured with antibiotics?
Because if the answer is 'not really' then it is like mycoplasmal infections 10-15 years ago... It is irrelevant.
I personally do not see the point of testing A, B and C if there are no treatments for these diseases. Of course, I exclude here situations when a diagnosis is necessary to get social security benefits, etc.

 

[Ema]

I would be tempted to ask: do ME/CFS patients with a positive Lyme test get cured with antibiotics?
Because if the answer is 'not really' then it is like mycoplasmal infections 10-15 years ago... It is irrelevant.
I personally do not see the point of testing A, B and C if there are no treatments for these diseases. Of course, I exclude here situations when a diagnosis is necessary to get social security benefits, etc.

I can't speak for anyone but myself, but I saw my first improvements on abx for Lyme. It isn't a cure but anything that takes the burden off the body is a plus in my book.

 

[Tito]

Of course, it is always a plus.
Do you know whether there are studies with percentages on this?

 

[Esther12]

Of course, I exclude here situations when a diagnosis is necessary to get social security benefits, etc.

That is another issue - even if the tests are utterly unreliable, they could still be socially useful! Which is another illustration of the difficult and often ridiculous situation that so many patients are in.

 

[beaverfury]

I would be tempted to ask: do ME/CFS patients with a positive Lyme test get cured with antibiotics?
Because if the answer is 'not really' then it is like mycoplasmal infections 10-15 years ago... It is irrelevant.
I personally do not see the point of testing A, B and C if there are no treatments for these diseases. Of course, I exclude here situations when a diagnosis is necessary to get social security benefits, etc.

If you look for me/cfs recovery stories on the net it can get quite downheartening. But it's a different result if you look for antibiotic treated Lyme disease recovery stories. There's loads of them!

If you take away dodgy lyme testing and dodgy lyme diagnosis you are left with the conundrum of a lot of ill people recovering on antibiotics for some unknown reason.
We don't have the same situation with untreated me/cfs.

As someone with limited medical knowledge I don't have an answer for this. But as someone who has been diagnosed with lyme and has improved on Abx I can say that it has been worth the gamble so far.
To be sure it's not all beer and skittles, but my number of good days has improved and the intensity of many symptoms has lessened. This has resulted in improved functioning for me.

 

[Vordhosbn]

If a warning sticky can't be agreed upon, a debate thread like this one would be fair and allow people to make their own mind up. If I was newly introduced to lyme or similar by such a forum, I would appreciate the balance. Although, it may need to be occasionally summarised somehow on the fist page as the thread length increased.

 

[Tito]

If you look for me/cfs recovery stories on the net it can get quite downheartening. But it's a different result if you look for antibiotic treated Lyme disease recovery stories. There's loads of them!
If you take away dodgy lyme testing and dodgy lyme diagnosis you are left with the conundrum of a lot of ill people recovering on antibiotics for some unknown reason.

You perfectly point out how the issues are intertwined:
Can people have both ME/CFS and Lyme at the same time? Or was ME/CFS a wrong diagnosis and people actually had Lyme all the way? Or people had 'contained Lyme' that is now full blown because they 'caught' ME/CFS at a later date? Or Lyme was just acquired during the course of ME/CFS? Or it could be that for some people it was scenario A, for others, scenario B, etc. Or is a Lyme positive test of no relevance because antibiotics would bring in some ME/CFS cases a positive outcome anyway?
It could explain why some people functionally get much better, slightly better or just no better.
There might be anecdotal evidence on the web, but a proper study is of course always better. It would be the opportunity to identify the different profiles (if any) and their potential outcome. Antibiotics are cheap compared to drugs like GcMAF, antivirals, etc. I am surprised that there does not seem to be proper studies on the effectiveness of antibiotics for us with or without a positive Lyme test.

 

[barbc56]

According to the studies, there is no such thing as chronic lyme. If you continue having symptoms after the recommended time, it may be that you are reinfected or something else is going on such as Fibromyalgia. There is late stage lyme diagnosis but that means you are getting symptoms because you were not treated when you got the infection.

IMPO, I would steer clear of LLMD's and go to an IDSA doctor. LLMDs often go by symptoms that are vague and could apply to many health conditions plus the criteria for diagnosing Lyme from the blood test is not as rigid as the IDSA doctors.

The attorney General of Connecticut sued the IDSA for neglecting to include long term antibiotic use in their protocal for the treatment of Lyme disease. An independent panel approved by both the IDSA and ILAD came to the following conclusion:

It determined what the IDSA and other groups, such as the American Academy of Neurology, have been saying for several years - clinical trials have showed little benefit from prolonged antibiotic therapy. Such treatments, using intravenous catheters, can cause life-threatening infections and other medical problems.

http://www.theday.com/article/20100423/OP01/304239950

http://www.idsociety.org/AR_Connecticut/

http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/Lyme Disease Testimony-Global Health Subcommittee.pdf

When people who have been treated for Lyme disease recover but later come down with its symptoms again, is the illness a relapse or a new infection?

The question has lingered for years. Now, a new study finds that repeat symptoms are from new infections, not from relapses.

The results challenge the notion, strongly held by some patients and advocacy groups, that Lyme disease, a bacterial infection, has a tendency to resist the usual antibiotic treatment and turn into a chronic illness that requires months or even years of antibiotic therapy.

The conclusion that new symptoms come from new infections is based on genetically fingerprinting the Lyme bacteria in people who have had the illness more than once, and finding that the fingerprints do not match. The result means that different episodes of Lyme in each patient were caused by different strains of the bacteria, and could not have been relapses.

http://www.nytimes.com/2012/11/15/h...oms-of-lyme-disease-study-finds.html?hpw&_r=0

The full study the above article refers to.
http://www.nejm.org/doi/full/10.1056/NEJMoa1114362

 

[Ema]

According to the studies, there is no such thing as chronic lyme. If you continue having symptoms after the recommended time, it may be that you are reinfected or something else is going on such as Fibromyalgia. There is late stage lyme diagnosis but that means you are getting symptoms because you were not treated when you got the infection.

IMPO, I would steer clear of LLMD's and go to an IDSA doctor. LLMDs often go by symptoms that are vague and could apply to many health conditions plus the criteria for diagnosing Lyme from the blood test is not as rigid as the IDSA doctors.

The attorney General of Connecticut sued the IDSA for neglecting to include long term antibiotic use in their protocal for the treatment of Lyme disease. An independent panel approved by both the IDSA and ILAD came to the following conclusion:



http://www.theday.com/article/20100423/OP01/304239950

http://www.idsociety.org/AR_Connecticut/

http://www.idsociety.org/uploadedFiles/IDSA/Topics_of_Interest/Lyme_Disease/Policy_Documents/Lyme Disease Testimony-Global Health Subcommittee.pdf


http://www.nytimes.com/2012/11/15/h...oms-of-lyme-disease-study-finds.html?hpw&_r=0

The full study the above article refers to.
http://www.nejm.org/doi/full/10.1056/NEJMoa1114362

The problems with those studies and articles have been discussed ad nauseam.

Obviously you are entitled to your opinion, but I could not disagree more with everything you have written.

My LLMD is a board certified internist. My initial appointment lasted over two hours while she took the most comprehensive medical history. These are true investigative doctors for the most part which is what those of us with chronic illnesses so desperately need whether it be Lyme or some other disease.

Ema

 

[barbc56]

I think this is some of the worst advice I have ever read on PR. The problems with those studies and articles have been discussed ad nauseam.

Obviously you are entitled to your opinion, but I could not disagree more with everything you have written.

My LLMD is a board certified internist. My initial appointment lasted over two hours while she took the most comprehensive medical history. These are true investigative doctors for the most part which is what those of us with chronic illnesses so desperately need whether it be Lyme or some other disease.

Ema

I have read quite a few posts on Lyme boards and was concerned about the advice I saw there as it is not scientifically based and goes against standard medical practice.

And yes there is freedom of choice.

Why do you think the studies are not valid? Could you point me to the other threads/posts? Thanks.

 

[barbc56]

Here is a detailed discussion of one study.

http://advance.uconn.edu/2007/071022/07102209.htm

 

[globalpilot]

If you look for me/cfs recovery stories on the net it can get quite downheartening. But it's a different result if you look for antibiotic treated Lyme disease recovery stories. There's loads of them!

If you take away dodgy lyme testing and dodgy lyme diagnosis you are left with the conundrum of a lot of ill people recovering on antibiotics for some unknown reason.
We don't have the same situation with untreated me/cfs.

As someone with limited medical knowledge I don't have an answer for this. But as someone who has been diagnosed with lyme and has improved on Abx I can say that it has been worth the gamble so far.
To be sure it's not all beer and skittles, but my number of good days has improved and the intensity of many symptoms has lessened. This has resulted in improved functioning for me.

I've been wondering lately if it isn't the case that a lot of people being treated for Lyme and recovering might have 'small intestinal bacterial overgrowth'. The treatment for that is short (1-2 weeks) and almost all relapse. But maybe the longer term antibiotics are helping subdue the overgrowth , if it exists.

 

[Ema]

I have read quite a few posts on Lyme boards and was concerned about the advice I saw there as it is not scientifically based and goes against standard medical practice.

And yes there is freedom of choice.

Why do you think the studies are not valid? Could you point me to the other threads/posts? Thanks.

The scientific methods can be and are fallible and studies tend to be narrowly focused and biased based on who is funding them. Typically the results papers are not even written by the research authors but often by marketing experts hired by drug companies. It is naive to put one's faith in such studies blindly without recognizing the limitations. You can make studies show just about anything you want. Statistics are easily manipulated. Murine models are criticized as not being representative of the human body. The list goes on and on yet some people still think of studies as the be-all end-all when they are just one tiny piece of the puzzle.

Anecdotal evidence should not be the end-all obviously either but it should not be disparaged as worthless either. There is a happy medium between the two. Anecdotal evidence should inform unbiased science but that is unfortunately not the world we live in today.

Google will provide you with a wealth of better written rebuttals to the studies "disproving" chronic Lyme than I ever could do in a short time here.

Suggesting that people avoid some of the most cutting edge, curious, innovative physicians out there carte blanche is just irresponsible in my opinion. If you send people to a typical mainstream doctor, they will not be tested or examined in any depth in most cases and will leave discouraged and disheartened with a prescription for antidepressants. Who knows how many years of suffering they may go through before trying again? I wouldn't want my words to be responsible for that.

Standard medical practice for many years for ME/CFS was CBT. Just because something is standard of care doesn't make it right. Medicine should be always evolving.

Ema

 

[barbc56]

I guess debating the scientific method might be best on another thread. While the scientific method is not perfect I believe the chances of it helping outweigh the harm of medical practice not based on science. I can best sum up my concerns as addressed in the following article:

The alternatives of using chance, partial or inferior methods, or haphazardness in attempting to solve these complex problems risks the danger of mediocrity. The threat to our competitiveness is well recognized. However, the harm from our inadequate education in and use of the scientific method is not recognized.

http://scientificmethod.com/bpg36_impofsm.html

Antibiotics can make people feel better as they have anti inflammatory properties.But long term use of antibiotics as suggested by the LLMDs come with huge downsides such as antibiotic resistance. The following recent study found other problems with overuse of antibiotics that directly affect our population.

The research study has found that certain antibiotics, when used over a prolonged period of time, can trigger a phenomenon called oxidative stress. This effect is a condition in which human cells can be programmed into producing chemically reactive oxygen molecules. For the killing of the desired microorganism this is effective; however the damage caused to the DNA, enzymes and cell membranes of the bacteria can also affect the body’s own cells.

As well as killing bacteria, the oxidizing process can negatively affect parts of body cells called mitochondria. These function to supply human cells with energy. This was seen with three common antibiotics: ciprofloxacin, ampicillin and kanamycin. Oxidative stress reflects an imbalance between reactive oxygen in the body and the body’s ability to readily detoxify the by-products or to repair the resulting damage.

Read more: http://digitaljournal.com/article/354041#ixzz2fCY4seqU


I would have to say that the reliance on just symptoms and of course for some conditions this is the only way of diagnosis, but the list for Lyme is so vague they could fit other conditions which might be overlooked.

Standard medical practice for me/cfs does not mean the same a condition is treated like ours. Yes studies can be flawed but the ones I site appear to be solid.

I am not saying people should avoid the treatments recommended by an LLMD but just giving some of the evidence for the other side of the issue. Then people can pick and choose to do what they want.

 

[beaverfury]

Here is a detailed discussion of one study.

http://advance.uconn.edu/2007/071022/07102209.htm

The above, is an article about an article about a review of data.

http://www.nejm.org/doi/full/10.1056/NEJMoa1114362#t=articleDiscussion

This is a study only about the recurrence of Erythema migrans in lyme disease. Any connection to systemic symptoms of lyme can only be speculated. Though there's nothing wrong with speculation.

http://wyss.harvard.edu/viewpressrelease/117/
Long term antibiotics cause side effects?! Hold the press.

http://www.idsociety.org/AR_Connecticut/The pdf from this site states-
"four placebo-controlled randomized trials do not support the use of long-term antibiotics as an appropriate treatment for Lyme disease."

Yet when you follow up on one of the researchers in the trials cited , http://www.ncbi.nlm.nih.gov/pubmed/23091568
BA Fallon, on NCBI pubmed.gov, is a member of a team which concludes this-

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

"2 of the 4 U.S. treatment trials demonstrated efficacy of IV ceftriaxone on primary and/or secondary outcome measures."

 

[beaverfury]

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

This is a new review of some of the 4 randomized clinical trials mentioned in the pdf of the IDSA, quoted above.

Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials. Nov 2012.

RESULTS:
Four RCTs met the inclusion criteria; all examined the efficacy of intravenous ceftriaxone versus placebo at approximately 3 or 6 months. Design assumptions for the primary outcomes in the two Klempner trials and two outcomes in the Krupp trial were unrealistic and the trials were likely underpowered to detect clinically meaningful treatment effects. The Klempner trials were analyzed using inefficient statistical methods. The Krupp RCT was well-designed and analyzed for fatigue, finding statistically significant and clinically meaningful improvement. Fallon corroborated this finding. Fallon also found improvement in cognitive functioning, a primary outcome, at 12 weeks which was not sustained at 24 weeks; improvements in physical functioning and pain were demonstrated at week 24 as an interaction effect between treatment and baseline symptom severity with the drug effect increasing with higher baseline impairment.
DISCUSSION:

This biostatistical review reveals that retreatment can be beneficial. Primary outcomes originally reported as statistically insignificant were likely underpowered. The positive treatment effects of ceftriaxone are encouraging and consistent with continued infection, a hypothesis deserving additional study. Additional studies of persistent infection and antibiotic treatment are warranted.

 

[WillowJ]

We have some alternative Lyme tests which are reporting many more people have Lyme disease than conventional testing, so it is disputed as to who 'really' counts as a positive sample.

If any new testing system did NOT identify more people as having Lyme disease than the current system, there would be a problem because we know the current system misses people with Lyme disease. Research conclusions I got second-hand (I have only so much energy, k?):
1) it tests only for one strain of Borrelia (from I think the NE of the USA), while we think there are more strains which are pathogenic
2) people with characteristic rash, known tick exposure, and classic symptoms can test negative to Lyme (and all known coinfections) with the CDC's interpretation
3) tests in mice show that the current system is incontrovertibly inadequate in mice: while that doesn't always translate exactly to humans, it's reasonable that there is a good chance it does in this case because of the other problems.
4) the interpretation used by the CDC does not even use an interpretation using the markers most specific to Lyme disease

I am not sure there are any existing tests which are great, but I am sure that the CDC's test system is shabby.

The last paper I looked at where someone was trying to demonstrate the CDC's test was valid and superior, they tested the validity of the CDC's test by assuming the validity of the CDC's test. i.e. positive cases were identified by the CDC test, and all the tests were compared to see how well they could identify those positive cases, or some such rubbish.

 

[Esther12]

Any worthwhile alternative test should still be able to hod up under blinded conditions though.

Ummm - I think some of my posts in this thread been deleted, as there was a section of this discussion I can't find anymore.

Re some of the discussion above, I think that some confusion can occur because of the different terminologies being used, post-lyme, chronic-lyme, post-treatment Lyme, etc, etc. To me, it does seem that there has been a recognition that Lyme disease can cause serious long-term problems, and that these patients have been mistreated, but the 'mainstream' approach has been very political, and driven by a desire to detach these problems from the alternative testing being used by some, and to brush aside problems with past treatment.

I really dislike the way in which people in power try to maintain their authority, but these problems don't do anything to validate 'alternative' approaches, or testing which has not been shown to be reliable under blinded conditions. A lot of people with what some now describe as PTLDS have been really badly treated, and I'd like to see more acknowledgement of this, and ideally some level of accountability... but I'm not expecting much.

Actually, a common theme that I've noticed in medicine is that often there is genuine mistreatment and quackery from those with power at the origins of most patient 'militancy', 'unreasonableness', etc. When one looks at the history of those patient groups that now have a bit of a dodgy reputation amongst doctors, it often leads back to treatment that was clearly morally unjustifiable. Maybe this isn't significant though - it could well be that for all patient groups, you will find that they were treated badly in the recent past. Sickness and disability do not seem to be things people are good at dealing with!

- sorry for ramble, a bit groggy at the mo.

 

[Ema]

Indeed, as time continues to pass without credible evidence of the reliability of any of these alternative tests, the dodgier it is to continue to use them imo.

These labs used by top professionals in the field, such as IgeneX and Infectolabs, are not dodgy in any way shape or form. There is not one shred of evidence to support this idea.

The best Lyme tests reliably and credibly show whether or not one has been exposed to one of possibly many strains of the Bb bacteria.

What they do NOT show is whether or not the current symptoms are due to an exposure to Lyme, a chronic Lyme infection or from something else entirely.

All testing ultimately relies on clinical judgment by a skilled professional in order to make a diagnosis. The same is true for basically all lab testing...should we not do any testing because none of it is perfectly perfect? That seems nuts to me.

Ema

 

[Esther12]

This study I referred to would seem to show that Igenex were selling unreliable tests.

Since then, there do not seem to have been assessments of their testing published. This does not inspire much confidence.

Sorry, end of the day for me.

This was one of the few studies we've had assessing an 'alternative' Lyme test from Igenex: http://www.ncbi.nlm.nih.gov/pubmed/11182109

I've not seen the full paper, but have read a lot of the discussion around it.

It could well be that I am 'picking' on Lyme testing, as it just so happens that I took the time to look into this a few years ago, and it seemed really dodgy. There may well be lots of equally dodgy tests around, but then I think it would be best to try to do more to provide patients with access to information on them too. There is a real danger that people end up trusting doctors who send them for testing of no value, and then make treatment decisions based on little more than tea-leaf reading, while the patient believes they are receiving science based interventions. I don't like that sort of thing, and think it is important for patients to have access to information which lets them make their own informed decisions about their health. If people want to go for spiritual healing type stuff, that's up to them, but it is important to make it clear to patients when they are stepping outside of medicine which has a good evidence base (and this is one of the reasons why I am so angry with the way CFS patients are often treated by 'mainstream' doctors).