[Closed] For fellow Lymies...

The Lyme Disease seems to go under the radar in terms of the damage it can cause to people for whatever reasons. I think it is due to the difficulty in detecting or identifying it until it becomes too late. I was watching so many Youtube clips regarding this disease where all point to the difficulty in detecting the cause after the disease is seen as "cured".

I also looked at the way ticks "take a ride" on people by waiting (ambush) at tip of grass or taller plant. One particular scary Youtube clip was the scientist walking in some of the taller bushes and he managed to get at least 10 ticks on his body after a short while.

If you are in a grassland or bushes try to avoid brushing the "tall" grass or bush if you can and especially areas full of animals.

There should more research etc into this disease as it is spreading.

A colleague caught the Lyme disease and nearly died from it. He was never the same again even after he "recovered" from it.

Thanks sog, shall take a read.

The Lyme Disease seems to go under the radar in terms of the damage it can cause to people for whatever reasons.

chewkw - Money. Vested interests.

chewkw - senior people who have dug themselves into holes, and are still digging.

the CDC is the US Government's Centre for Disease Control and Prevention

Not according to Urban Dictionary its not 🙂

Apparently I have "traces" or indications of lymes disease in some blood tests - my missus thinks it explains a LOT of things.... me I think I am just difficult.

The post Lymes disease for everyone is very different because of the way the virus/bacteria/parasites (whatever you call it) that will morph to hide themselves.

The normal antibiotic will only kill off some of them virus/bacteria/parasites while some still remain in your body. It is the ones that are still in your system that will cause your life to be miserable and worst case scenario "pretend" to be seen as other illness so that you are diagnosed for other illness which is not really there.

I have the feeling that this disease is like parasite trying to turn you into some sort of host or drone to help them replicate in others. Hence, there are some people passing their illness to their children.

Bear in mind, if this is a parasite illness it will attempt to control you.

From the Lyme disease medical experts they have indicated that all Lyme disease will morph into something very different from individual to individual. One common antibiotic will not cure you and currently some of the bacteria etc have managed to evade being detected.

People who caught Lyme disease may have very different symptoms that come and go for many years without realising the root cause of their problem.

It is still unsure if people who caught Lyme disease can be completed cured at this moment.

A short explanation: the CDC is the US Government's Centre for Disease Control and Prevention. They have set standards for Lyme Disease testing and treatment since they first recognised it in the US (at Old Lyme, Connecticut). The following linky shows serious criticism of the CDC. It is long, but is worth the effort, it gets to LD about half way...

https://andthebandplayson.com/2016/10/23/cdc-corruption/

The UK health authority has followed the CDC's lead in LD.

That was a good find slowoldgit, thanks for bringing it to our attention.

Nothing surprises me any more, there's too many with power who're being financially rewarded for their intransigence.

PS Any tips for dealing with insomnia?

There's what I learned working shifts-on-ships: be careful about coffee, sunlight resetting one's body clock, sticking to a routine. Since then don't let it get to you: hot drink, stay warm, read something you're comfortable with.

Oddly I tried Ovaltine and it seemed to cause me to wake early. I suspect the chocolate content, for I don't have it otherwise, being a stimulant of sorts.

Background noises don't bother me, but if they did I'd try having gentle music playing. It works for small children ISTR.

(edit) The link comes from a LD support group on FB, I understand you don't like the idea of FB, but I'll suggest you need a contact there for thyroid issues.

It is still unsure if people who caught Lyme disease can be completed cured at this moment.

Depends what your definition of cure is. If you mean symptom free, then yes, it is absolutely possible. Even indefinitely. However, it may be that there are persisters that your immune system keeps in check. It's still not clear.

Any tips for dealing with insomnia?

If you are happy to use pharmaceuticals, then Amitriptyline works wonders for sleep and fibromyalgia, even at low doses.

Otherwise, Melatonin or 5htp.

Master herbalist Stephen Buhner recommends Ashwagandha too http://buhnerhealinglyme.com/symptoms/herb-for-insomnia/

I heard recently that the GP's in Callander nr Stirling have all become recognised as experts in this area due to the high levels of infection.

Interesting OP (and subsequent posts Chewk). Thanks.

A colleague caught the Lyme disease and nearly died from it. He was never the same again even after he "recovered" from it.

Care to elaborate? What were the long term implications?

One for those in Scotland: a couple of folk at the University of the Highlands & Islands are doing quite a bit of work on the background to the infected tick and human populations.
Anecdotally, there seems to be a lot of it around so raising awareness and asking folk to do the checking has to be better than getting infected.

http://www.smartsurvey.co.uk/s/CheckforTicks1/

Speaking of Buhner, this is a very insightful talk regarding current challenges with Lyme disease, hosted by Daniel Vitalis. I respect Buhner hugely for his work – endlessly researching and treating thousands over the years.

http://www.danielvitalis.com/rewild-yourself-podcast/zombie-ticks-and-the-lyme-wars

Absolutely worth a listen if you have an interest in the disease. Some entertaining moments too.

I've had years of treatment and still I'm not well

I can manage to get to work. Travelling can be a problem. Most weekends are spent recovering from the week. It can quite easily get you down.

I can manage to get to work. Travelling can be a problem. Most weekends are spent recovering from the week. It can quite easily get you down.

That sounds pretty horrendous and much like my own experience when I was misdiagnosed for 4 years. It becomes about just getting through the day. Sleep is a release.

Do you mind me asking...Have you tried a full course of multi agent antibiotics? i.e. not just a mono therapy of Doxycycline? Any herbal approaches?

[i]Most weekends are spent recovering from the week. It can quite easily get you down. [/i]

I've been there too. Stick at it, there's pressure building for change.

MCPH - I believe it can mess with the victim's heart. Obviously I don't know about the individual referred to.

One scientist got booted from the CDC for a conflict of interest, the rest is abject BS - this SPIDER group has not entered dialogue with mainstream media - the only reference to it is in conspiracory and alternative medicine websites.

Currently loling my balls off at the suggestion of treating lymes with herbs.

For Tom_W1987

Parsley

HTH

😉

Just out of interest OP, how long have you had lymes and what current treatement are you having from your GP?

[b]lyme[/b] [s]s[/s]

Parsley

Hngggggggggg........must resist....must not take the piss....mu.....and this my friends.....is why Brexit happened.

#posttruthsilliness

😆

xx

😉

Currently loling my balls off at the suggestion of treating lymes with herbs.

Many pharmaceuticals are based around herbal therapies.

Example – Artemisinin was used as a primary cure for malaria for YEARS. The WHO has recommended artemisinin combination therapies (ACT) be the first-line therapy.

Artemisinin is isolated from the plant, sweet wormwood.

You've just made yourself look a bit ignorant I'm afraid 😉

P.S. It's "Lyme Disease" not Lymes. Or Borellia if you want to use the more appropriate term.

Note isolated.....meaning that it's produced in known amounts and concentrations and prescribed at clinically relevant doses. None of which you can be sure of when munching down on your herbs.

Justifying herbal remedies by stating that some real medicines (actually loads are) are derived from them, shows real ignorance of the scientific method and drug development.

Nah, no "munching" going on here.

If you have any passing interest in Lyme disease or treatments and haven't just popped in to take the piss, I would recommend reading the book "Healing Lyme".

All of it is backed by peer-reviewed research, actual solid science and evidence of successful herbal treatment with thousands of patients either combined with antibiotics or not. In many cases, people have been healed where antibiotics have failed.

Would I replace antibiotics with herbs alone? No. But it doesn't make it less efficacious.

[url= https://www.amazon.com/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_1?ie=UTF8&qid=1477590187&sr=8-1&keywords=healing+lyme ]2015 Ed.[/url]

I'll check the book out, but I could get randomly generated tosh published in a crap peer reviewed journal. Publications dont make something true.

You dont have any pharmacovigilance data on mixing these herbs with antibiotics - so suggesting these things could actually harm someone.

I'll check the book out, but I could get randomly generated tosh published in a crap peer reviewed journal. Publications dont make something true.

Agreed.

I'll let you make your own mind up. It's worth a read though, whether you buy into the concept of non pharma therapy or not.

Why is not a suprise to me at all that he "majored" at Berkley in the 60's lol. The place that brought us such wonderful escapades like killing fully grown elephants with massive doses of LSD.

http://www.lymeneteurope.org/forum/viewtopic.php?f=12&t=676&st=0&sk=t&sd=a;

The heart as an organ of perception

Molecular self-organization

The use of direct perception in diagnosis and healing

Earth-centered Spirituality and Ceremony

Cultural Expressions of Nature Spirituality

Cross-cultural Contemplative Spirituality

I love stereotypes, maaaaaaaaaaaaaaaaaaaaaaaan.

Yep, a hippy. I'd judge him by his work though.

I mean, what else did you expect a herbalist to look like? 😆

Book, cover, etc

makecoldplayhistory - Member
Care to elaborate? What were the long term implications?

Fatigue. He cannot work long hour. If I am not mistaken also headache but definitely fatigue.

I think he got the bull eye red circle bite and was out of work for I think 3 months or more. Then struggled to get up to speed when he got back but somehow he managed to work until his retirement 5 years ago.

I have not heard of Lyme disease or tick borne disease at all prior to his case and I thought he was just either making it up or he was just allergic to something ...

Not sure about the long term implications but according to the Youtube medical experts it will vary according to individuals. Apparently the antibiotic cannot remove/target all the bacteria from Lyme disease as it has the potential to "hide". Hence, doctors who are not specialised in Lyme disease will always diagnose it as something else.

Apparently the antibiotic cannot remove/target all the bacteria from Lyme disease as it has the potential to "hide".

That's more or less the case.

There are varying forms of Lyme Borrelia that have been identified depending upon their environment. When under stress from antibiotics, they can create encysted forms that are much more resistant. In this form they become mostly dormant, but can't be eradicated as easily by many tetracyclines such as Doxycyline. Therefore other antibiotics such as Flagyl or Fasigyn have to be employed that can break through these cysts. Unfortunately these are much harder on the body and more expensive, hence why they are not employed as first-line options.

However, use these for long enough and you will potentially eradicate the Borrelia. Different antibiotics have differing abilities to penetrate tissue and so on. Like any organism, Borrelia try to locate themselves where they feel safest where some antibiotics may not be able to penetrate sufficiently to eradicate the last of the Borrelia – one example is across the blood brain barrier.

Not everyone's immune system is strong enough or primed to kill these last Borrelia, so in these persons they re-appear from their encysted forms and it starts all over again.

This is the point where herbs can come in very useful, as they can be tolerated for much longer periods of time, if not indefinitely. This allows those who could not recover from antibiotics, due to intolerance or side effects to keep a maintenance dose going forward. Alternatively, patients could use them for longer (months to years) to kill the last of the Borrelia, something that would leave them in a sorry state if they were on antibiotics for that time.

In the end, if your immune system is compromised, which often happens with chronic lyme, it becomes a struggle to recover.

There is obviously far more science to it, but that's an overview in layman's terms.

flipiddy - Member
Not everyone's immune system is strong enough or primed to kill these last Borellia, so in these persons they re-appear from their encysted forms and it starts all over again.

Lyme Borellia <= that's one of the culprit as it can attach to your cell or something like that.

This scare the shite out of me as I listened to the patient recalling symptoms reappearing after so many years because the root cause has not been eradicated.

This is the point where herbs can come in very useful, as they can be tolerated for much longer periods of time, if not indefinitely.

I remember trimming yew hedges and bagging up the cuttings to be picked up by a truck. They were used to make tamoxifen, I believe.

The question is what herbs? Where from? Who has such knowledge?

Buhner has everything you need to know really. If you have Lyme or know someone who has been touched by Lyme, really do buy his [url= https://www.amazon.co.uk/Healing-Lyme-Borreliosis-Coinfections-Rickettsiosis/dp/0970869649/ref=sr_1_1?ie=UTF8&qid=1477601116&sr=8-1&keywords=healing+lyme ]book[/url]. It's a good read – once finished, if you're struggling to source any of the rarer herbs drop me an email. I can point you towards reputable vendors.

Cowden is another one, everything is packaged by Nutramedix, easy to source, but it is a lot more expensive.

They vary in approach, but success rates are more or less the same between both protocols from what I've seen of online polls.

I would say that these should be considered complementary or last resort options to antibiotics in case they have failed. First and foremost should be a trip to a "Lyme literate" doctor (of which there are not many in the UK). Sensible safety warning over.

There's what I learned working shifts-on-ships: be careful about coffee, sunlight resetting one's body clock, sticking to a routine. Since then don't let it get to you: hot drink, stay warm, read something you're comfortable with.

Oddly I tried Ovaltine and it seemed to cause me to wake early. I suspect the chocolate content, for I don't have it otherwise, being a stimulant of sorts.

Background noises don't bother me, but if they did I'd try having gentle music playing. It works for small children ISTR.

(edit) The link comes from a LD support group on FB, I understand you don't like the idea of FB, but I'll suggest you need a contact there for thyroid issues.

Thanks sog. Have often wondered about going to bed as soon as darkness falls and getting up at first light.

I know, I should join the Lyme fb group. Shall think about it some more! Thyroid issues all dialled but it's the chronic (as defined by private doctor) Lyme that's the problem. This hasn't happened recently, I've definitely had this for a good few years although unable to pinpoint the exact year.

Thanks to flipiddy for some very informative posts.

I don't like putting a lot of FB stuff on here. Would send you the odd informative content, usually a link, if you like but don't have your email.

I seem to remember reading somewhere about remote people in the tropics, ie with fairly constant day length and no clocks. They'd be up at dawn, active in daylight, then sit around by firelight for three hours or so before sleeping. I guess that would be our default state before we got civilised.

https://www.sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/

and

https://www.sciencebasedmedicine.org/lemons-and-lyme-bogus-tests-and-dangerous-treatments-of-the-lyme-literati/#more-31066

Confirmation bias and the Lyme-literati

Individuals who believe they have Lyme disease that was missed by their own providers will sometimes seek out so-called “Lyme-literate” providers; I’ll call them Lymlits. Often these individuals believe they are suffering from chronic Lyme disease (a non-entity discussed elsewhere), and are hoping to confirm this diagnosis. Lymlits provide the confirmation bias these patients are looking for. They quickly empathize with these patients and offer what they claim to be a more informed approach to their diagnosis and treatment. Like all alternative medicine providers (and make no mistake, that is exactly what we are talking about here), they are quick to cast the patient’s more conventional provider as shackled by convention, or to Big Government or Big Pharma. Often they claim a more holistic approach as well, infusing other sCAM modalities or spiritualism into the mix. Again, like many sCAM providers, they claim special knowledge and insights not available to or ignored by conventional providers. To the sCAM-credulous, the Lymlits represent an open, understanding ear and long-sought answers to their problems.

The websites of Lymlit providers clearly pander to the fears, anxieties, and preconceptions of their clients. Often they contain entire sections devoted to the “problem” of undiagnosed (but not over-diagnosed) Lyme disease, and how the Lymlits can help uncover the diagnosis and provide the correct (often dangerously incorrect) treatment. The patients I see at my practice who have bought into a wide variety of woo diagnoses and treatments have often been seen by providers of the Northampton Wellness Center, and the over-diagnosis and treatment of Lyme disease is no exception. Their services are so typical of this this kind of practice that I will use them as an example. A quick perusal of their website’s Lyme disease section should be of concern to anyone who cares about the practice of EBM and SBM. Like many sCAM practitioners, this group does not serve as primary care providers but rather as “consultants”. This is a misnomer, however, as they are rarely consulted by science-based providers. Rather, patients typically self-refer. Using a “holistic” approach, they claim the ability to help patients with chronic illness who have not been helped by their conventional providers. What they offer is reassurance that they have come to the right place, that they will get the answers they are looking for, and receive treatments not available through most providers. Ironically, their diagnostic tests and treatment modalities are usually described with terms borrowed from true science, and are often claimed to be evidence-based as well. The Northampton Wellness Center’s website seems to do everything possible to reaffirm people’s fears about their chronic or undiagnosed Lyme disease. It explains why the organism is so tricky to diagnose and treat (it really isn’t), and how they can do so safely, effectively, and often “naturally” and “holistically”. They hype the existence and importance of biofilms, co-infections, weakened immune systems, and heavy metals in the pathogenesis of Lyme disease, and explain how they can help diagnose and fix these problems. And unsurprisingly, the Northampton Wellness Center website has the clear red-flag seen on many other sCAM practice websites – the ubiquitous web store. These stores typically hawk all manner of supplements, potions, and snake oils to treat your every ailment. I couldn’t access the Northampton Wellness Center’s web store without being a patient, so I don’t know exactly what they offer the chronic Lyme sufferer. Perhaps most alarmingly, Lymlits like those at the Northampton Wellness Center hype unapproved and non-recommended laboratory tests for diagnosing Lyme disease in their patients. One example is an extended, purportedly-superior Western blot assay. According to their website:

Unfortunately, most laboratories leave out the most specific bands, 31 and 34, on their Western Blot assays. If we use a special laboratory and get a positive band 31 result, we can confirm that this is truly related to the Lyme organism by doing a “31 kDa epitope” test, to make sure it is not positive from a cross-reaction, which could occur from having a chronic viral infection.

Without getting too deep into the weeds here, the Internet is rife with conspiracy theories about why the CDC would fail to include the 31 kDa band in the group of bands required to be present for a positive Western blot interpretation. At the heart of the conspiracy is the belief that this band, which represents OspA, the outer surface protein of B. burgdorferi, was left out because OspA was the main component of a Lyme vaccine (Lymrix) which is no longer available but was given to nearly 2 million people before it was taken off the market. The allegation is that the band was not included because people who had received Lymerix would likely test falsely positive. Given the limited number of individuals vaccinated with Lymerix, this seems an unlikely explanation. Another allegation is that the CDC and FDA do not want people to be diagnosed with Lyme disease as a result of a conspiracy involving the insurance industry. However, as explained by Halperin et al. in the book Lyme disease: an evidence-based approach, the explanation is much more mundane (and rational) than this:

the bands selected for use in the Western blot were chosen not because they are unique to B. burgdorferi but rather on the basis of statistical considerations that included an analysis of those combinations of bands that provided the best predictive values for well-characterized specimens known to have been obtained from individuals with and without Lyme disease

In other words, though OspA is a relatively specific marker for infection with B. burgdorfori, in the assessment of actual patients it was not found to be among the group of bands which best distinguished Lyme disease patients from controls.

Wblot

They go on to add that that:

laboratories using criteria other than these must establish the validity of their own criteria based on equally rigorous scientific assessments.

Scientists are actively working on better, more sensitive and specific diagnostic tests for Lyme disease. But it will take reproducible and validated results to move these tests forward. Not the direct marketing of unsupported tests to Lymlits by specialty labs. Other examples of unapproved and non-recommended tests discussed on the Northampton Wellness Center website and recommended by many Lymlits include dot-blot testing, PCR, and T-lymphocyte response assays. The CDC clearly states that none of these tests are sufficiently reliable for diagnosing Lyme disease. In 2005, the CDC became so concerned about the proliferation of non-validated and potentially dangerous tests for Lyme disease, that it issued an alert in its Morbidity and Mortality Weekly Report (MMWR). In April of this year, the CDC issued yet another warning about a new laboratory-developed culture method that has been made available commercially. Again, the CDC has warned that the results of these types of “home-brewed” tests should not be relied upon. According to the warning:

Published methods and results for this laboratory-developed test have been reviewed by CDC. The review raised serious concerns about false-positive results caused by laboratory contamination and the potential for misdiagnosis.

The CDC’s warnings are justified. While Lymlits claim these specialized tests are better able to detect Lyme disease than those used by conventional practices, what they do, in fact, is produce a predictable increase in false-positive results. Thus, by pretending to have superior testing options than those provided by the patient’s primary care provider, Lymlits provide patients with the elusive Lyme disease diagnosis they are searching for, and then offer unnecessary treatments for a non-existent infection. Ignoring the science-based treatment recommendations of the Infectious Disease Society of America (IDSA), Lymlits often recommend dangerously long, sometimes intravenous courses of antibiotics, in addition to myriad other potentially dangerous sCAM modalities for the treatment of these questionable infections. Additionally, the misdiagnosis of Lyme disease in these individuals potentially delays the diagnosis of other, real conditions, which then go untreated.

Ironically, Lyme advocates and Lyme-conspiracy proponents were at the forefront of the manufactroversy surrounding the demise of Lymerix, the first FDA-approved Lyme vaccine. Although Lymerix, whose main component was the OspA protein, was not the most effective vaccine (with an efficacy rate <80%), it was still a cost-effective preventative strategy for people at risk in endemic areas. Unfortunately a slew of adverse events reported soon after the vaccine was licensed, combined with an irresponsible (but predictable) media storm, put a chill on the use of the vaccine, eventually leading to its economic failure and being pulled from the market. Pre- and post-marketing studies involving large numbers of patients failed to link any significant adverse events to Lymerix beyond the usual injection site redness and swelling and occasionally fever seen with other vaccines. There was some evidence that a small subset of people with the HLA-DRB1*0401 genotype might be at risk for developing an autoimmune reactive arthritis in response to the vaccine, though the data was inconclusive and did not prove causality. Still these concerns, combined with the spreading fear of unsupported adverse events and the ensuing media frenzy was enough to put an end to the vaccine, a vaccine that could have led to the prevention of many cases of Lyme disease.
Conclusion: Lymlit tests are not supported by good evidence

Lymlit doctors claim they are providing their patients with a service that most others are either unwilling or lacking the knowledge to provide. They balk at the argument that these tests are not supported by sufficient evidence of validity, citing junk science, data from the proprietary labs themselves, or anecdote to support their position. These arguments are often shrouded in conspiracy theory, invoking closed-door sessions in which physicians and scientists do the bidding of Big Pharma or the insurance industry. So-called Lyme advocacy organizations have evolved to support individuals who believe they have chronic Lyme disease or Lyme disease undiagnosed by their doctors. While research is underway to develop even more sensitive and specific tests for diagnosing Lyme disease, the current strategy recommended by the CDC is the best we have to date. Unfortunately, as long as there are providers willing to pander to conspiracy theorists and to patients looking to confirm their fears, people will continue to be needlessly treated, and our societal approach to science will move further back in time.

Tags: children, chronic Lyme disease, complementary and alternative medicine, diagnostic tests, IgG blood tests, IgM blood tests, Infectious disease, Lyme disease, Lyme-literate MDs, pediatrics, Scam, Western blot

Posted in: Diagnostic tests & procedures, Science and Medicine
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Let me be a little bit controversial, and recommend a psychologist to cure your chronic lyme disease.

Tom - this is a US Oncology Doc's experience of LD testing and diagnosis. If you don't like the LD content, stick with it, at the end is the moving story of his heart transplant.

oops, started watching it...

The thing is with mavericks like Dr Spector, is that 99 times out of 100 they are wrong - Peter Duesberg, once an eminment scientist worthy of a nobel is now a nobody due to his continual AIDs denialism.

The further they climb, the harder they fall - I'll keep listening to the mainstream consensus for now - until a good review offers some credible evidence. As it stands, there is none.

My ex likely developed AVNRT due to an infection of flu, there is no way in hell he can prove that had anything to do with chronic lyme. Developed arthitis and heart issues after being stressed and overworked for four years in middle age......must have had lymes...lol.

He seems like a massive bellend, eminent in his field so thinks that his opinion overules that of cardiologists and infectious disease specialists.