Lyme community says we all have it

[duncan]

The ixodes scapularis ticks that flourish throughout many areas in the U.S. are perfect hosts for not just Bb sensu strictu, aka conventional Lyme, but also are excellent reservoirs for both B. garinii and B. afzelii. Which begs the question: Why aren't U.S. health surveillance agencies regularly testing for the latter two species? We know that many parts of Europe can and do sift for all three of the sensu lato family.

In fact, you would think at this stage, not only would tests distinguish between species, but also determine strains since virulence can be tied into strain, just are purportedly it is to species.

Now, testing around the world is rushing to catch up with the unexpected and widespread - at least in terms of continents - emergence of B. miyamotoi, which darkens further the pathogen mix. Without a good test yet, although labs like Imugen are working on the problem, how can we tell how deep this TBD has burrowed into communities that just 24 months ago were told were safe from it? And how many are ill with it, and are jettisoned out of medical communities with the label of diagnosis unknown since current tests cannot define it?

This is representative of the broad and long-standing practice of foisting TBD patients into the ME/CFS community. Moreover, it muddies the picture on how great or small the differences are between those two theoretical distinct maladies.

 

[JalapenoLuv]

The ixodes scapularis ticks that flourish throughout many areas in the U.S. are perfect hosts for not just Bb sensu strictu, aka conventional Lyme, but also are excellent reservoirs for both B. garinii and B. afzelii. Which begs the question: Why aren't U.S. health surveillance agencies regularly testing for the latter two species? We know that many parts of Europe can and do sift for all three of the sensu lato family.

The US government has an extensive black operations program running for the rich plutocracy which is entirely classified. If you look up the history of the Central Intelligence Agency (CIA), you'll see they routinely intervene to support insurgents against democratically elected officials. Similarly, for decades the Center for Disease Control for decades waged a propaganda campaign to classify myalgic encephalopathy as a psychological illness to benefit disability insurance companies (Osler's Web by Hillary Johnson).

Last year there was a 10% chance that the entire US electrical grid would be taken down by excessive solar flare activity. US congress debated the issue a few years prior but decided to do nothing about it. Instead, large numbers of subterranean transport tunnels and living facilities were built called Deep Underground Military Bases (DUMBs).

It is a goal of the plutocracy to kill off people they deem not worthy of reproduction, called useless eaters. Denying research for serious chronic diseases like B.afzelii is a means to that goal. When patients contract lyme they can be shuffled through the disability insurance system then rejected as being fit to work so they become destitute and die off.

I did a Freedom of Information request for information about bartonella spp. research from the Fort Dietrick army base in an area where I first displayed symptoms and was denied all information under a presidential order stating a national security risk.

Now, testing around the world is rushing to catch up with the unexpected and widespread - at least in terms of continents - emergence of B. miyamotoi, which darkens further the pathogen mix. Without a good test yet, although labs like Imugen are working on the problem, how can we tell how deep this TBD has burrowed into communities that just 24 months ago were told were safe from it? And how many are ill with it, and are jettisoned out of medical communities with the label of diagnosis unknown since current tests cannot define it?

I wouldn't look to the USA and UN for leadership on health issues. They are part of the problem, not the solution. Official opinions are highly suspect.

 

[duncan]

If anyone wants to weed through the population, one way not to do it is via Lyme. Or ME/CFS. As a rule, neither is inclined to kill very quickly.

 

[JalapenoLuv]

So maybe the primary driver are the insurance companies. Neither lyme nor CFS are listed as automatically qualifying impairments.

 

[duncan]

It's a pretty safe bet to suggest insurance companies are stakeholders. A lot of it can be chalked up to legacy concerns and dogma and greed. The human element pervades this story like a faint but persistent odor.

You know the old bromide: Follow the money. It's voracity is certainly ratcheted up in the Lyme world of patents and medical miscues and diluted science and inertia.

 

[helperofearth123]

Thought I'd post an update:

Had 3 months of Ceftin + Artesunate for suspected chronic lyme from a private hospital (after 3 and a half years of moderate-severe CFS following an NHS lyme diagnosis). No improvement. I got a lot worse in the first 2 months and had to take a few days off, felt better, maybe slightly better than how I was before starting treatment, no completed the third month and haven't had the side effects come back but am basically the same as before I started.

I took a western blot at Igenex and came back Igenex + CDC positive for igm and Igenex + CDC negative for igg. Don't know what it means. On the fence as the whether to pay another £50 for interpretation when CDC website says it means it's probably a false negative. I'll send it in to my NHS infectious disease doc.

Going to switch to 3 months of doxycycline, if there's no improvement after that i'll give up on chonic lyme.

I've got a lumbar punture and venogram next week on the NHS, so hopefully they will find something there.

 

[duncan]

I hope the lumbar puncture works out for you. If you've never had one, I have, and for me at least, it wasn't all that bad of an experience.

If you are having it for Lyme, I suspect they will look for pleocytosis, slightly elevated proteins, and of course signs of Bb antibodies in your CSF. This can be through an ELISA or WB or via PCR. Just as with blood, there should be thresholds they are employing. They will also probably check the antibody index, which is a metric they use to see if Borrelia is in your brain or spine.

I would wager they will try to culture it, but odds are they won't be able to.

 

[Hanna]

Thought I'd post an update:


I took a western blot at Igenex and came back Igenex + CDC positive for igm and Igenex + CDC negative for igg. Don't know what it means. On the fence as the whether to pay another £50 for interpretation when CDC website says it means it's probably a false negative. I'll send it in to my NHS infectious disease doc.


.

Dr Horowitz says lymees present often a picture like yours : IgM + and IgG -. And that does not refer to false negative. This is weird and there is still no scientific detailed explanation for this, but this is the conclusion he has drawn from seeing 12,000 patients.

 

[maryb]

@Matthew Jones
Ceftin + artesunate isn't going to get all 3 forms of Lyme is it?? Perhaps others more knowledgeable will chip in.
So you stuck at 2 months of treatment? Good for you, its so hard when you don't feel any better.
I take it you're able to work?
Hope the doxycline does something, again though need to be addressing all form of the little beggars.

 

[Charles555nc]

If anyone wants to weed through the population, one way not to do it is via Lyme. Or ME/CFS. As a rule, neither is inclined to kill very quickly.

If too many people die too quickly, people- however stupid- would catch on.

GMO's, lyme, and fluoride do major damage over generations. In fact, I think 3 generations of GMO food leads to complete sterility in lab animals.

 

[Charles555nc]

So maybe the primary driver are the insurance companies. Neither lyme nor CFS are listed as automatically qualifying impairments.

You were right the first time, the cdc stood against AIDS treatment, stood against "chronic fatigue syndrome" treatment, stands against adequate lyme treatment, and now is letting Ebola run through Dallas, Texas, ignoring its own protocols.

Its scary to think people want you dead, but denying the truth will just lead to longer suffering. People like Bill Gates who use vaccines to sneak in animals viruses and large doses of aluminum and mercury into people's bodies, they aren't going anywhere unless people get politically aware, ie audit the fed, vote libertarian, protest.

 

[duncan]

Hanna, the IgM vs IgG debate is a good reason why everyone tested should have access to detailed Western Blot records (as opposed to being denied a WB because of a negative ELISA, or simply receiving Western Blot results which don't identify bands). Regardless of whether they are IgM or IgG, specific bands can attest conclusively to Borrelial exposure, at the very least. They won't define whether the infection is past or current, but they will tell you if your body is generating antibodies to it. They will enable people to shrug off that IDSA myth that most chronic Lyme sufferers never were even infected.

 

[duncan]

I know that some physicians frequent this forum. Some researchers, too. Can they - or anyone else for that matter - explain (as in justify) to me the requirement of running an ELISA - that may only carry a 65% accuracy rate or less, according to some studies - and then scoring a positive on that ELISA, prior to allowing a Western Blot for Lyme?

Why not go straight to a Western Blot?

 

[Hanna]

Yes, you're right @duncan, would be better to run directly a western-blot, with detailed results per band, and precision of the strains of the borrelia which were included into the kit, which is also not so easy to get.
After fighting 5 months to get a WE -even after a + ELISA- what I could only get in my country was a WB, without any detail, nor per band, nor strains. Only a negative conclusion which is completely useless.

 

[Antares in NYC]

I know that some physicians frequent this forum. Some researchers, too. Can they - or anyone else for that matter - explain (as in justify) to me the requirement of running an ELISA - that may only carry a 65% accuracy rate or less, according to some studies - and then scoring a positive on that ELISA, prior to allowing a Western Blot for Lyme?

Why not go straight to a Western Blot?

I'm no physician, but I can explain that easily:

The requirement to run the highly inaccurate Elisa first and postpone a WB as much as possible is the direct result of the IDSA guidelines on handling Lyme, which the CDC adopted and now every insurance company enforces with an iron fist.

Just like with ME/CFS, insurance companies have a tremendous interest in not treating Lyme because it's expensive and requires long term aggressive doses of expensive medications. Needless to say, the IDSA board is composed of 14 members, 9 of them have several conflicts of interests and multiple collusions with the insurance industry. It is obscene how deep in bed with the insurance industry they are, but apparently that's perfectly ok in this day and age.

As you can imagine, it is no surprise that the guidelines the IDSA issued in 2006 denied the existence of chronic Lyme (outright denied it even exist), eliminated the opinion of the many dissenting doctors and specialists, and claimed Lyme is no worse than a bad cold, requiring no more than 30 days of antibiotics. The insurance industry and the CDC adopted those guidelines and stonewalled any studies, doctors or treatments that did not comply with their extremely narrow view.

They basically denied the existence of the disease, so they don't have to pay for any treatments (same for Lyme as it is for ME/CFS).

When asked about the hundreds of thousands of patients suffering from Lyme for years, they just shrug it. Some of these doctors are on the record saying "it's all in our heads" (sounds familiar?) despite studies that prove otherwise.

That's the same reason why we are not seeing better diagnostic tools for Lyme. In the US they still test for only ONE strain of borrellia, when they have discovered more than 100 different strains. Craziness indeed, but extremely convenient. No proof of infection = no reason for the insurance company to pay for treatment. Make no mistake: the business model of the insurance industry requires the denial of services for them to make a profit.

So it comes down to MONEY, like most things in this world we live in. It comes down to greed and to the protection of the profits of the insurance corporations. It is remarkable to me how ME/CFS and Lyme patients have been ignored and mistreated by the system for three decades now, despite the alarmingly rising numbers of patients affected by these silent epidemics. We should all join forces, frankly.

 

[duncan]

Well said. The single strain they test for in the U.S. - as a rule - is the B31 strain.

It is just as curious imo as to why there are currently no late stage Lyme studies that I could see underway at the NIH, just as there are currently no treatment studies.

Maybe late stage cases no longer present with complications even the IDSA historically has acknowledged; and maybe the incidence of Lyme cases refractory to treatment has finally declined to zero....

 

[Antares in NYC]

It is just as curious imo as to why there are currently no late stage Lyme studies that I could see underway at the NIH, just as there are currently no treatment studies.

Well, even if they had recognized the severity of late stage Lyme in the past, the dogma now is that chronic Lyme does not exist. Just like CFS, it's all in your head. Get on with the program, buddy! There are profit margins to secure!

Also it's not like Lyme and CFS are true priorities that need to be investigated like male pattern baldness or erectile dysfunction. Come on now!



PS: This reminds me of a recent quote from the head of the IDSA in an interview for a Canadian documentary in Lyme. When confronted with the fact that in all animal models and lab research with mice and dogs shows that chronic Lyme is indeed real, proven and serious, he had the chutzpah to reply that "serious researchers should not infer from animal models when dealing with human illness studies" (I'm paraphrasing).
Boom!
In his stubborn denial of chronic Lyme, he basically denies the usefulness of use of lab animal testing models, which has been used in medicine for the best part of the last two centuries.

"Animal models? Craziness! Disease, what does "disease" mean?"
These people have no shame. I'll see if I can find and post a link to the video later.

 

[Antares in NYC]

Here's the link to the exact video clip I mentioned:

https://www.youtube.com/watch?feature=player_detailpage&v=t4IEzEwOkF8#t=2181

It's a great documentary overall, but too neutral and does not mention the serious conflicts of interests from that doctor. Again, no shame whatsoever when denying the evidence or even discarding animal studies off hand .

 

[Antares in NYC]

Here's the documentary in its entirety. Interesting viewing for all those suffering from chronic Lyme:

 

[helperofearth123]

Thought I'd post an update:

Had 3 months of Ceftin + Artesunate for suspected chronic lyme from a private hospital (after 3 and a half years of moderate-severe CFS following an NHS lyme diagnosis). No improvement. I got a lot worse in the first 2 months and had to take a few days off, felt better, maybe slightly better than how I was before starting treatment, no completed the third month and haven't had the side effects come back but am basically the same as before I started.

I took a western blot at Igenex and came back Igenex + CDC positive for igm and Igenex + CDC negative for igg. Don't know what it means. On the fence as the whether to pay another £50 for interpretation when CDC website says it means it's probably a false negative. I'll send it in to my NHS infectious disease doc.

Going to switch to 3 months of doxycycline, if there's no improvement after that i'll give up on chonic lyme.

I've got a lumbar punture and venogram next week on the NHS, so hopefully they will find something there.

Updating here. I gave up on the antibiotics after no improvement for 5 months. I had the lumbar puncture and had a small/moderate improvement afterwards for about a week. I had a venoplasty with balloons being inflated in the back of my head had a mild brain fog improvement for a few hours 2 consecutive evenings following the procedure (not much effect at all). Speaking to the neuroradiologist tomorrow on the phone to see if he will do anything else, hoping he will!