Lyme Disease as a model and or subset of CFS - Must reading on Lyme or CFS/ME

[Athene]

I just received a DVD copy of the ILADS 2011 conference proceedings yesterday but have not watched the DVD yet. Is this where you got their newest ideas on dealing with the difficulties getting at all the forms and places the Bb hides out? If not, where do you get the latest thinking?

I also have a number of immune issues. IgG subclass deficiency in IgG1 and IgG3, low CD3 and CD8 and low NK cell activity. What is their latest thinking on how to help bolster the immune function since that's the other half of the problem? My doctor suggested trying Zadaxin which is used worldwide as an adjunct to cancer treatment and other viral infections due its ability to stimulate immune function? Dr Kaiser in Mill Valley is doing a CFS trial of KPAX's immune supplement that was trialed in Canada. Any thoughts on that?

I regularly check the ILADS website and watch their DVDs , but my main source if info is my Lyme doctor. He is one of those intellectual types who gives you a fabulous brain dump and really goes into detail when you ask a question instead of just giving you a simplified answer. I'm also a member of a lyme forum.

Low CD3 and 8 and low NK cells are typical of Lyme, the low NK cells level (absolute number and also activity level as measured by CD 57) is considered diagnostic of Lyme as it is absolutely Lyme specific. You normally get this measured every time your Lyme titers are monitored as it is the best indicator of whether you have beaten Lyme or not. If people stop antibiotics when their CD 57 is still low they get a relapse.

The low IgG subclasses are less infection specific. But the ones you have are usually ssociated with chronic lower lung infection.
I think you should get tested for chlamydia pneumonia and mycoplasma pneumonia, which are 2 very common co-infections in Lymeadn other chronically immune-compromised patients and which can cause these subclasses to be suppressed.
(Bear in mind these tests produce incredibly high rates of false negatives and a good doctor will diagnose you on symptoms rather than test results).

Read this:
http://ednieuw.home.xs4all.nl/IgGsubclasses/subkl4.htm

The bottom line of what I am saying is, you have these immune problems because of the infections, as you fight the infections the immune system will heal.

I don't know about either of the immune boosters you mentioned but the one my doctor is very keen on is "anti factors" produced by Researched Nutritionals. He doesn't trust anecdotal evidence, he likes controlled / peer reviewed medical research. Apparently this stuff has produced very good results, consistently.

I have tried all kinds of immune support and the thing that works best for me is nutrients. Vitamins A and D and C. Taking A, you need a mix of beta carotene adn A, as Lyme makes you unable to convert beta carotene to A in sufficient quantities, so you do need both. D also protects you from getting an excessively inactive thyroid, which is another common complication in chronic Lyme. And taking very large doses of C also helps uyour adrenals function, which is essential in a chronic inflammatory situation - which Lyme most certainly is.

 

[LHCTom]

I regularly check the ILADS website and watch their DVDs , but my main source if info is my Lyme doctor. He is one of those intellectual types who gives you a fabulous brain dump and really goes into detail when you ask a question instead of just giving you a simplified answer. I'm also a member of a lyme forum.

Low CD3 and 8 and low NK cells are typical of Lyme, the low NK cells level (absolute number and also activity level as measured by CD 57) is considered diagnostic of Lyme as it is absolutely Lyme specific. You normally get this measured every time your Lyme titers are monitored as it is the best indicator of whether you have beaten Lyme or not. If people stop antibiotics when their CD 57 is still low they get a relapse.

The low IgG subclasses are less infection specific. But the ones you have are usually ssociated with chronic lower lung infection.
I think you should get tested for chlamydia pneumonia and mycoplasma pneumonia, which are 2 very common co-infections in Lymeadn other chronically immune-compromised patients and which can cause these subclasses to be suppressed.
(Bear in mind these tests produce incredibly high rates of false negatives and a good doctor will diagnose you on symptoms rather than test results).

Read this:
http://ednieuw.home.xs4all.nl/IgGsubclasses/subkl4.htm

The bottom line of what I am saying is, you have these immune problems because of the infections, as you fight the infections the immune system will heal.

I don't know about either of the immune boosters you mentioned but the one my doctor is very keen on is "anti factors" produced by Researched Nutritionals. He doesn't trust anecdotal evidence, he likes controlled / peer reviewed medical research. Apparently this stuff has produced very good results, consistently.

I have tried all kinds of immune support and the thing that works best for me is nutrients. Vitamins A and D and C. Taking A, you need a mix of beta carotene adn A, as Lyme makes you unable to convert beta carotene to A in sufficient quantities, so you do need both. D also protects you from getting an excessively inactive thyroid, which is another common complication in chronic Lyme. And taking very large doses of C also helps uyour adrenals function, which is essential in a chronic inflammatory situation - which Lyme most certainly is.

I was tested for mycoplasma pneumonia and toxoplasmosis IgG and was positive for both. May I ask who your doctor is and located? What level of success have you had in fighting Lyme and strategies you have tried and have worked? I've read Dr Joseph Burrascano's guide which seems good. Do you know what your doctor's thinks of his guide? It seems the IDSA has suppressed organizing treatment research and clinician's have had to try and sort it out in a clinical setting without the coordinated research and trials since they don't believe Lyme can even be chronic. At least CFS seems to not have this level of barrier.

 

[Athene]

I was tested for mycoplasma pneumonia and toxoplasmosis IgG and was positive for both. May I ask who your doctor is and located? What level of success have you had in fighting Lyme and strategies you have tried and have worked? I've read Dr Joseph Burrascano's guide which seems good. Do you know what your doctor's thinks of his guide? It seems the IDSA has suppressed organizing treatment research and clinician's have had to try and sort it out in a clinical setting without the coordinated research and trials since they don't believe Lyme can even be chronic. At least CFS seems to not have this level of barrier.

I'm afraid the barriers and problems with CFS are a lot worse than the Lyme ones. I guess the Lyme situation is just even more irrational and infuriating because there is even a blood test proving you have a specific infection yet they still claim it doesn't exist!

Anyway, my doc is at the Borrelise Centrum Augsburg in Germany
www.b-c-a.de

My doc, and Burrascano, are both doctors registered as members of ILADS, so they are both on the same page as far as treatment protocols go.
Do look at www.ilads.org, that is THE place for cutting edge Lyme research. They organise the global lyme conferences.
Burrascanos latest guide was written several years ago and some of the antibiotic protocols are now out of date - rumour has it he is working on a new edition. Other than this, most of it is still valid, I think there are also some advanced on nutritional issues. Basically Burrascano gives a brief summary, you cannot compress all the info into a booklet but it is the best starting point for a new patient.

I have made definite progress - lots of progress - with my treatment. I am using antibiotics andnutrients, EWOT, in the past used high-frequency therapy (when at the BCA), infra red saunas for detoxing. They all help. It's the antibiotics and nutrients that do the bulk of the work.

 

[voner]

Lyme neophyte questions...

I'm starting to wade into the quagmire of Lyme disease.

I have one neophyte question -- do the neurological symptoms include neuropathic pain, allodynia, hyperalgesia?

Another neophyte question -- How do the medical doctors figure out you have Lyme or not -- meaning the tests commonly inconclusive - or do they just say, " let's try this and monitor what's going on"?

There is one doctor my town that practices in the Lyme long-term antibiotic protocol -- but she has a 5 year waiting list at minimum. I've tried searching on the Internet sites -- with no luck finding a doctor in my area, outside of the one I mentioned

Lyme seems s to be just as much of a medical paradox as CFS. I have no desire to spend a lot of money and feel horrible for little or no positive symptomatic change........

 

[LHCTom]

Lyme info

I'm starting to wade into the quagmire of Lyme disease.

I have one neophyte question -- do the neurological symptoms include neuropathic pain, allodynia, hyperalgesia?

Another neophyte question -- How do the medical doctors figure out you have Lyme or not -- meaning the tests commonly inconclusive - or do they just say, " let's try this and monitor what's going on"?

There is one doctor my town that practices in the Lyme long-term antibiotic protocol -- but she has a 5 year waiting list at minimum. I've tried searching on the Internet sites -- with no luck finding a doctor in my area, outside of the one I mentioned

Lyme seems s to be just as much of a medical paradox as CFS. I have no desire to spend a lot of money and feel horrible for little or no positive symptomatic change........

The later stages of Lyme are not well understood but it can cause all kinds of neurological and neuro-psychiatric symptoms when either the spirochete itself, toxins it produces or the immune system switches to autoimmune and get into the nervous system and brain. This is disputed by the IDSA but researchers coming from a clinical setting like the ILADS doctors or neurological point of view like the Columbia Tick-Borne Research Center see it all the time and are trying to get to the bottom of it.

Testing accurately and getting a good diagnosis is problematic because of the IDSA's position blocking it from mainstream medicine. If you want to get a good but scary intro, watch the movie trailer of "Under Our Skin" at www.youtube.com/watch?v=sxWgS0XLVqw and you will get a sense of the problems.

Lyme seems to be able to mess up the immune system like in CFS making you more likely to get other infections and making it more difficult to treat once the Spirochete is widespread, has converted to other forms like the Cyst and the immune function is weakened. Early in the infection, a month of antibiotics can stop it cold. Once it gets a foothold, even IV antibiotics and immune support often fail.

Many researchers believe Lyme is one example of a triggering infection for CFS but with its own spin. Spinal Fluid testing has shown very large quantities of unexplained proteins in both CFS and Lyme versus controls. Those proteins then float around through the Spinal Chord and brain ventricles and are probably related to the autoimmune problems causing CNS damage and the weird symptoms.

If you have good reason to believe you might have Lyme, this is what I would recommend.

Get a doctor to order a Western Blot with PCR and a complete co-infections panel from IGenex http://igenex.com/Website/.

If they show a positive by their criteria ( not the CDC criteria), then the odds you have Lyme is >90%.

If you then get a culture done by http://advanced-lab.com/spirochete.php and its positive, the odds are extremely high.

Negatives don't rule it out as the tests are not perfect but negatives across the board is a very good sign. Sometimes the Lyme has effected your immune system which in turn can cause a false negative.

If your doctor puts you on an antibiotic like Ceftin and you get really ill after a day or so, then the odds are even higher.

Its important to find a doctor who is knowledgeable of Lyme and isn't hung up on the IDSA side of the controversy or their mind will be closed. Its tricky....Good Luck

 

[Athene]

I'm starting to wade into the quagmire of Lyme disease.

I have one neophyte question -- do the neurological symptoms include neuropathic pain, allodynia, hyperalgesia?


#########YES. For most people with Lyme, these would be in their top four symptoms, coming only after relentless, inexorable exhaustion.


Another neophyte question -- How do the medical doctors figure out you have Lyme or not -- meaning the tests commonly inconclusive - or do they just say, " let's try this and monitor what's going on"?


#########Good labs can get a pretty high rate of accuracy with Western blot testing and CD57 counts combined.
A common policy when results are negative but all the symptoms all say yes is to try antibiotics for a period of about weeks or so, then test again - you often get a positive the second time around.


There is one doctor my town that practices in the Lyme long-term antibiotic protocol -- but she has a 5 year waiting list at minimum. I've tried searching on the Internet sites -- with no luck finding a doctor in my area, outside of the one I mentioned


##########Go to www.ilads.org and email them to ask for a list of their member doctors in your state, or nearby ones. Unfortunately all good Lyme doctors have a long waiting list but I am sure Ilads can find you someone with less than 5 years!


Lyme seems s to be just as much of a medical paradox as CFS. I have no desire to spend a lot of money and feel horrible for little or no positive symptomatic change........

##########Treatment makes you feel better (apart from the first 4 days herx) from the start and gradually, steadily improve. If it makes you feel worse not better then you need to change antibioitcs. An Ilads Lyme doc will never leave you feeling worse, that is a sign treatment is having an adverse effect on you and that you are NOT getting better.
30 percent of people with long term Lyme cannot be cured. The rest can, so long as they are willing to take antibiotics for months to years. I cannot tell you it is easy, ut personally I find it easier then just livig with CFS and doing nothing about it.

 

[Mercy]

Since the test from Advanced Laboratories actually cultures Borellia, by definition a positive result means that Borelia was present, otherwise it could not be grown in the culture medium. Unless I am missing something, there can be no false positives, only false negatives.

The following are links to two studies by Eva Sapi. One demonstrates the in vitro efficacy of several antibiotics while the other describes the efficacy of Samento and Banderol for treatment of bothcystic forms and biofilms.

http://www.lymebook.com/nutramedix-samento-banderol-study.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

 

[Athene]

Since the test from Advanced Laboratories actually cultures Borellia, by definition a positive result means that Borelia was present, otherwise it could not be grown in the culture medium. Unless I am missing something, there can be no false positives, only false negatives.

Yes that is right.
There is a link explaining it here
http://www.researchednutritionals.com/information.cfm?ID=255

Thanks for the links about samento and banderol, Mercy. Those are extremely interesting and I am planning to discuss them with my doctor soon.

 

[Mercy]

Thanks for the links about samento and banderol, Mercy. Those are extremely interesting and I am planning to discuss them with my doctor soon.

You're welcome, Athene.

 

[pine108kell]

##########Treatment makes you feel better (apart from the first 4 days herx) from the start and gradually, steadily improve. If it makes you feel worse not better then you need to change antibioitcs. An Ilads Lyme doc will never leave you feeling worse, that is a sign treatment is having an adverse effect on you and that you are NOT getting better.
30 percent of people with long term Lyme cannot be cured. The rest can, so long as they are willing to take antibiotics for months to years. I cannot tell you it is easy, ut personally I find it easier then just livig with CFS and doing nothing about it.

4 days and the herx is over from chronic lyme? I've been diagnosed with lyme and used to follow many of the forums and went to two LLMDs. There may have been a few, but it would be rare to hear anyone with Lyme or an LLMD say you should only herx for 4 days and then just start feeling better. It is way more complicated than that and many with lyme have other immune problems. I also do not know where the 70% with chronic lyme CAN be cured statistic comes from.....I doubt it, although I know some do--I would guess less than half that.

 

[LHCTom]

Since the test from Advanced Laboratories actually cultures Borellia, by definition a positive result means that Borelia was present, otherwise it could not be grown in the culture medium. Unless I am missing something, there can be no false positives, only false negatives.

The following are links to two studies by Eva Sapi. One demonstrates the in vitro efficacy of several antibiotics while the other describes the efficacy of Samento and Banderol for treatment of bothcystic forms and biofilms.

http://www.lymebook.com/nutramedix-samento-banderol-study.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

Thanks... Do you know where the Samento and Banderol treatment protocol is described? Is it on the ILADS site? Are they used alone or in combination with antibiotics? Where can they be purchased? I would like to share this with my doctor as I believe he may not be up to date on these issues and of course try it.

 

[Athene]

4 days and the herx is over from chronic lyme? I've been diagnosed with lyme and used to follow many of the forums and went to two LLMDs. There may have been a few, but it would be rare to hear anyone with Lyme or an LLMD say you should only herx for 4 days and then just start feeling better. It is way more complicated than that and many with lyme have other immune problems. I also do not know where the 70% with chronic lyme CAN be cured statistic comes from.....I doubt it, although I know some do--I would guess less than half that.

The up-to-4-day herx can happen when you add any new element to your treatment protocol. A herx is caused by the quantity of toxins, produced by bacteria as they are killed by antibiotics, being so high that the body's ebility to eliminate them is temporarily overwhelmed.

If you get symptoms that feel like that Herheimer reaction happening again during treatment, and you have not added another new antibacterial agent, then you are not having a Herxheimer reaction. You may be overwhelmed by the quantity of bacterial toxins, but it cannot be called a Herx, becuse that is simply not the definition of a Herheimer reaction.

In this case, what you are having may be:
1. A breakdown in the function of one of your emunctory organs (antibiotics may cause pathologies in your liver or kidneys, most notably) which diminishes your ability to eliminate toxins
2. A relapse! in other words an increase in the quantity of live borrelia, which may be caused by the development of antibiotic resistance, or by a weakening of the immune system (either by Borrelia or by another acute infection, for example) or other causes - in this case you need a change of treatment protocol
3. An adverse or toxic reaction to one of the medications you are taking. These can sometimes cause permanent organ damage or even death. Again, you may need an immediate change in meds.

The one exception to this is the approximately four-weekly lifecycle of Borrelia, which will cause a worsening of symptoms approximately once a month. Again, this is an increase in the bacterial toxin load, NOT a Herheimer reaction.

If you have a good ILADS member treating you, you should never be left suffering what feels like a Herheimer reaction. You could have something highly dangerous going on. Your doctor should be checking to find out the true cause.


The 70 percent cure rate for chronic Lyme disease statistic comes from my doctor. He is a prominent member of ILADS and hosted the ILADS educational meeting in Augsburg last year. I do trust him, and I trust his statistics better than I trust your guesses.

 

[LHCTom]

99.99% or better but not perfeect due to human errors - but is academic

Since the test from Advanced Laboratories actually cultures Borellia, by definition a positive result means that Borelia was present, otherwise it could not be grown in the culture medium. Unless I am missing something, there can be no false positives, only false negatives.

http://www.lymebook.com/nutramedix-samento-banderol-study.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

Yes in principle a positive culture should be a 100% positive. That is in principle and assumes no errors are made in the implementation of the culture. The Western Blot and other immune system response tests make all sorts of error prone assumptions about your immune response plus implementation accuracy so have a major error component that a culture does not have.

I believe there are only 2 ways a culture could produce a false positive. The first is contamination. Since ALS appears to only culture the Lyme Bb and the patients sending blood are nearly all trying to verify already positive findings, this lab must be very careful about contamination since most of its samples contain the Bb bacteria. Contamination is possible but very unlikely in a high quality lab but nobody is perfect. Is it 99.99%? Only there quality control people will know after they have time to study their process. So its darn close but not 100%

The second is proper identification of YOUR Bb after the culture completion. We know they send a micro-photograph along with the results so probably use dark field or fluorescent microscopy for identification. The Lyme spirochete is very unique in the way it looks so it doesn't take a very skilled morphologist technician to make the ID. I believe they offer a DNA PCR ID for an additional cost with near perfect ID. A suspect the only room for error here is mixing up samples and getting another patients sample ID by mistake. Stuff happens. I've worked in Labs and people make errors.

It may be splitting hairs but I felt Lab QA should be considered. I was positive and have very little doubt and am being treated.

So its not perfect but darn close for positives. MUCH better than the Western Blot. Good lab QA can probably get it VERY close to 100%. This is rather academic and if you get a positive culture, get treated, PERIOD.

 

[baccarat]

The up-to-4-day herx can happen when you add any new element to your treatment protocol. A herx is caused by the quantity of toxins, produced by bacteria as they are killed by antibiotics, being so high that the body's ebility to eliminate them is temporarily overwhelmed.

If you get symptoms that feel like that Herheimer reaction happening again during treatment, and you have not added another new antibacterial agent, then you are not having a Herxheimer reaction. You may be overwhelmed by the quantity of bacterial toxins, but it cannot be called a Herx, becuse that is simply not the definition of a Herheimer reaction.

Sorry I disagree. Antibiotics used to work for me but not any longer. At the time, the herxes wouldn't start immediately but kind of build up over the first few days and there wasn't an automatic cut off on day four. But you're right, after an initial peak then it gradually subsided but over a period of at least a week. Unfortunately over the past year or so, I haven't had any of those prolonged herxes and with that, no improvement.

Thanks... Do you know where the Samento and Banderol treatment protocol is described? Is it on the ILADS site? Are they used alone or in combination with antibiotics? Where can they be purchased? I would like to share this with my doctor as I believe he may not be up to date on these issues and of course try it.

You can get them from Nutramedix or amazon. If you buy them from Nutramedix they'll send you a document which explains you how to take them based on Dr Cowden's protocol for Lyme (may be you can find that online somewhere). They're usually taken without abx but with a bunch of other herbs and supplements, see Cowden's protocol.
http://nutramedix.com/

 

[voner]

how does one find a chronic lyme doc with experience???????

 

[Askeladden]

I would like to add this article about Lyme disease:

http://www.kenoradailyminerandnews.com/ArticleDisplay.aspx?e=3508080

 

[Askeladden]

how does one find a chronic lyme doc with experience???????

Which country are you in?

 

[Athene]

how does one find a chronic lyme doc with experience???????

If you email www.ilads.org they will suggest the closest Ilads member doctor to your home. An Ilads member is your best bet with Lyme disease. Any doc claiming ot be "lyme literate" who is not a member (and there are many) cannot possibly be up to date with all the latest research.

 

[Askeladden]

I totally agree with Athene in that! They are the best!

 

[Mercy]

Thanks... Do you know where the Samento and Banderol treatment protocol is described? Is it on the ILADS site? Are they used alone or in combination with antibiotics? Where can they be purchased? I would like to share this with my doctor as I believe he may not be up to date on these issues and of course try it.

I just noticed your question. Banderol and Samento are both part of the Cowden protocol, but there is no reason why they cannot be used by themselves without following the entire protocol. They are in a liquid form and a specific number of drops are added to 4 ounces of water, which you drink after it has sat for a minute or more, 30 minutes before a meal. Treatment begins with only one or two drops twice a day, increasingy the amount as tolerated. From my experience people very widely in their reactions. Some experience massive die offs with only a couple of drops while some take the full dose of 30 drops. I take the full doses.They can be used alone or in addition to antibiotics.

You can buy the products, made by Nutramedix from several places but I provided a link to a company with very reasonable prices and fast service.
http://www.naturalhealthyconcepts.c...arch_Begin_Only=&sort=&range_low=&range_high=

And for the Cowden protocol:
http://www.nutramedix.ec/ns/