Yves here. While this article may seem a bit far afield for this website, it illustrates how political considerations influence science and medicine, two fields we have been indoctrinated to view as relatively free of corporate and ideological influences.
By Bob Goodwin, an investor and medical device entrepreneur who lives in Mercer Island, Washington
A recent article in Medscape is titled New Lyme Culture Test Failed CDC Analysis. At first I took the article and paper at face value, and tried to dig into the errors of a chronic-Lyme disease researcher. The only errors I could discover were by the CDC, and they seem blatant. In the same article about the CDC paper was the explanation that they did not want tests that might lead to unnecessary antibiotic treatment. While it is understandable that the CDC would not want a bad test, why would they block a good test? Because it will cause people to get treated? The CDC is on record taking the position of the Infectious Disease Society of America on treatment of Lyme disease, but it seems odd for the CDC to be taking a position to kill this test, especially considering that two different university hospitals are currently doing independent reviews of the same test.
I wrote here last week that I was getting blocked on Wikipedia from providing details about the Lyme Wars because Wikipedia only wanted to present the mainstream view.
The two camps in the war have only one scientific disagreement that I can detect. The mainstream medicine’s view is that the Lyme bacteria is non-persistent if treated with a few weeks of antibiotics, and even if untreated, the infection should be considered cleared when the immune system is no longer fighting the bacteria. People can still be sick later, but this sickness is likely due an auto-immune reaction. The minority position is that the bacteria hides and burrows, changes forms and builds biofilm colonies that both make the bacteria resistant to antibiotics, but also invisible to the immune system.
For 20 years there has been no meaningful change in the treatment For Lyme disease or the scientific consensus due to the war. Contrast that with the HIV epidemic, and the pace of innovation by the exact same set of researchers and doctors, and yet the CDC estimates that 4 million people in the US may have been infected, and only 10% of those diagnosed.
A good Lyme test would go a large way to ending the wars, because at some point in the debate one side is right and the other is wrong. Eva Sapi is a researcher in at University of New Haven and has been treated with long term antibiotics for Lyme disease. She is firmly in the minority camp. She has done work in both the culturing of Lyme bacteria and the ability of Lyme bacteria to form biofilms.
Culturing bacteria is the gold standard, and has been in use for 100 years. A culture is a medium that allows a bacteria to reproduce. Given enough time, a small amount of bacteria can turn into a measurable amount of bacteria. And unlike PCR (DNA identification of the bacteria), culturing cannot detect dead bacteria that are lurking from a long extinguished infection.
Culturing Lyme bacteria has not worked in the past, and that part of the story is outside the scope of this post. There has been an attempt made about every decade, but they have proven faulty. What is different today is that there are microscopes now that can see the details of bacteria and microbiology is flourishing with new insights. And testing a test is very easy. Unless there is a war.
This is how a test of a test should work: Start with N known infected samples, and N known uninfected samples and send them blind to the lab. It is a commercial lab in Pennsylvania. The CDC does not have to use its own address to send samples to the lab. 10 days later the lab will return whether the sample of each blood was infected or not. Pretty simple?
There is even a gold standard on how to find known infected blood. If someone has a bulls-eye rash, they have Lyme disease. Extract blood and send to lab.
So two years after Eva’s paper comes out we hear the CDC say the test failed? The details are interesting.
First, the CDC never actually tested the test. They merely reviewed Eva Sapi’s paper and said that it must have failed, they even concluded “(the data) indicate that laboratory contamination was the probable source of the borrelial DNA found in the patient samples.”
Note that the paper is about a culture, and the criticism was about DNA. In fact the laboratory in question does provide a second DNA service on any successful culture, primarily to detect which of the three types of Lyme bacteria were found. The CDC made no statement about the accuracy of the cultures. But notice the tricky Medscape article title “New Lyme Culture Test Failed CDC Analysis.” Is it just my imagination, or did the CDC just broadcast to the scientific and medical community the impression that the test failed?
The DNA piece gets a little technical, and I might have gotten in over my head. Sapi’s test only sequenced 603 base pairs of the pyrG gene. That gene was selected because it is an “essential gene” which therefore is useful for identifying a genus, and useless for identifying an individual. And for testing, that is the properties you want. Another property of essential genes (I think this is right) is that mutation survival is poor. A genus tends to keep this gene intact.
The CDC paper first claimed that 44% of the positive results came from a European genus, and none of the tested people had recently traveled to Europe. The Sapi paper had produced the same result. But the CDC presumption was that the European genus did not exist in the US. The primary difference between the US and Europe in regard to Lyme disease is the tick population, and not the bacteria population. If you look at the geography of reported Lyme infection in the US it is similar to region of our main tick vector. But California also has confirmed Lyme cases, but different tick species. It seems more likely to me that the European genus was never isolated to Europe. Without a reliable culture test this cannot be known.
The second claim was that 80% of the DNA had exact matches with the DNA that Sapi used in her lab, and thus the CDC assumed cross contamination. There was no mention in the CDC article of what number of mutations should be expected in an essential gene, and I also didn’t see any mention that the verification tests were done at a medical testing company, not the lab that Eva used for her research, so I am not sure how the precise form of cross-contamination that was cited in the CDC paper was even possible.
With 2 universities already testing the culture, and the ability to independently test so simple, why is the CDC wading into research wars? In the words of Professor Durland Fish of Yale University, “This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned. We need reinforcements.” (here)
well, at least there’s some awareness in the US about LD, while in the UK it draws (mostly) blank looks from the GPs..
That despite the fact it’s a reportable disease.
I don’t have time to really dig through the literature to fully assess this. However, as someone who works in the field of molecular ecology, I’ll note that microbial and PCR contamination can be a huge problem in labs (I’ve wasted a lot of time dealing with spurious results from particular scientists who were prone to generating PCR contamination – and that seems to essentially be one of the accusations the CDC scientists make here). Moreover, a quick skim of the literature seems to show that there’s been extensive PCR testing of ticks in Europe and the Western hemisphere for Borrelia genotypes, and extensive serological and PCR typing of Borrelia in human patients – so the body of evidence supporting the “CDC presumpton” of restricted geographic distribution of the Borrelia species appears pretty strong. Finally, the fact that pyrG is an essential housekeeping gene wouldn’t prevent it from having numerous mutations – third base positions of codons are free to vary even while maintaining identical amino acid sequence – and moreover, existing data seems to suggest high genetic diversity in Borrelia species.
Without digging into this much further, I can’t exclude that there might be more subtle problems with the CDC scientists’ claims/arguments. But IMHO, the critique in this column is insufficient – and skimming the CDC and Sapi papers leaves me currently leaning in the direction of believing that there may have been a contamination problem in Sapi’s work.
My background: Years of studying dormant bacteria that tolerate antibiotics, including tuberculosis and chronic infections with Pseudomonas.
You’re correct that essential genes can still suffer from drift, but they’re highly constrained in doing so. And one of the advantages of using essential genes is that they’re highly conserved across species, but even more so within genus and species. It’s not unlike making evolutionary inferences from 16S rDNA coding. When tracking lineages of bacteria that thrived in a host for years, it’s often critical to sequence several essential genes to ensure that you genuinely are tracking a lineage and not newly occuring infection results. With that said, I tend to agree with your analysis of geographic spread of the pathogens that cause Lyme disease.
My PI was awarded money by the Lyme Disease Alliance to investigate this persistent infection/dormancy/unculturability issue of the pathogen. And his assessment of the field is that it was seriously lacking in rigorous study. Now this can be attributed to the main stream medical field considering it a closed topic. The research dollars to support important basic and clinical research are not there for this disease, and that is surprising given that the diagnosis can be quite difficult.
I think better molecular tools are going to aid in diagnosis. While DNA tests can find dead bacteria, one should not find dead bacteria that cause Lyme disease in people’s bloodstream. And strong efforts to culture rare pathogens are being made. Micheal Surrette is made some advances in finding rare pathogens in Cystic Fibrosis and other conditions by using brute force culture and molecular techniques to bring rigor to the question of what is there in a patient/environment. http://www.surettelab.ca/lab/
While I don’t think this article is rigorous on the CDC’s assessment of the test, it is good to highlight that Lyme disease is a poorly understood infectious disease that requires more rigorous research. At least by questioning the CDC’s assessment, we can turn around and ask them why there isn’t a good test and why they aren’t funding it.
here are two tick species that carry European Lyme bacteria for which there is no monitoring in the US.
Here is another species that is not monitored, but research has detected European bacteria in 5% of these ticks found on the atlantic coast.
Bob, there are so many kinds of Borrelia in Europe and bissetti and valaisiana are a few more and in addition, candidatus neo ehrlichia mikurensis, spotted fever rickettsioses are different as well and Tularemia such as Franciscella holartica can be spread by mosquitoes in Sweden. My family has been infected in both the US and Sweden and I suspect one member became ill in the Bahamas. The Bahamas has borrelia in mosquitoes but again we do not have accurate research to see what other vectors may be transmitting the pathogens of so called lyme disease.
Thank you for your thoughtful reply. I respect that I did not make a scientifically solid case, and that I am not a scientist. This is also not a science blog. What I did make was a case that the CDC is interfering with science. I have a lot of research on the Lyme wars, and there is no question that there has been disruption of research and that the CDC has taken sides.
So how should a citizen activist handle a case like this? A fairly blatant take-down of a critical component in contentious research. The title implied the culture test failed. But the take-down was about the follow on test, not the culture.
The science folks are not likely to engage in the debate unless they have a dog in the hunt, which leaves it to regular folks to question. I think that there is fairly good evidence that the CDC was trying to spike a test that they never actually tried to verify (or maybe they did try it and it worked).
Regarding your points on ticks and genotypes, I may be still out of my element, but my reading of the research and discussions from researchers is that these questions remain controversial and are only considered settled by those on one side. Serology is not useful for genotyping, and blood PCR is not considered reliable way to detect Lyme by either side when taken from live humans.
I do believe there is a controversy even on the tick research. You will find that every country has a broad distribution of genotypes except the US, and part of the controversy includes limiting research to known ticks and regions in the US.
I would ask also if it is possible to contaminate when different facilities were used.
This whole problem of lyme disease is a complicated one and unfortunately the infectious disease society is not the proper body to outline any treatment guidelines. Rather, we need more research on the myriad of pathogens transmitted and how those pathogens wreak havoc on both the veterinary and human population. Many of the pathogens are known to create chronic infections. There are numerous articles on the chronic nature of Mycoplasmas, Chlamydias, Brucella, Coxiella burnetti and others and these pathogens are being transmitted by zoonotic vectors. In my family alone we have Spotted fever rickettsioses, Brucella, Various Borrelia, Mycoplasmas, Chlamydias, Bartonellas, Babesias, reactivation of herpes viruses and compromisation of the immune system. Many of these microbes have efflux pumps, persister cells and other methods allowing persistent infection. 108 genera of baceteria were found in ticks in Italy and there are a multitude of viruses, protozoans and other parasites. We must search for answers and not rely upon flawed treatment options by a society that does not understand the pathogens. Treating all of the pathogens with a simple formulaic doxycycline or rocephin is not the answer. This is a world wide problem that requires concerted effort from both veterinary and human researchers and we need adequate funding.
You cannot predict the rate of mutation of a gene simply because it is “essential”. Although an essential gene is supposed to be conserved functional, mutations can accumulate without functionality loss to a degree that depends on each particular gene product and it’s mechanism of action. Those functional constraints to mutation vary even within regions of a particular gene if it codes products with different functional domains.
With the information available in this post it is not possible to evaluate if CDC claims hold water or not. The rationale behind the selection a particular gene for diagnosis musn’t be only it’s characterization as essential but also there must be previous data on the evolutionary history of the gene, good enough to conclude if it is suitable for the identification of bacterial genus, species or strains.
Lida Mattman (1912-2008) was a world-renowned authority on cell wall deficient microbes, at Wayne State University in Michigan. She was working on a test for these infections, and her laboratory was shut down by armed Michigan State Troopers, and her research thence forbidden. Are we getting the picture yet, America?
Do you have any links about why the storm troopers were called in? Or any other aspects of the situation?
This is one of the difficulties in trying to fully document and get good references on all the accusations and incidents in the Lyme wars is that I have to track down a lot of claims like this. I want to be careful and not say whether or not this one is true, because some of the claims are in fact true. But there is a lot of anxiousness and fear because of the ongoing war, and so a lot of claims tend to get amplified and are hard to verify.
Lyme has neurological symptoms, which make it harder to sympathize with some patients, as opposed to seeing HIV ravaging young men’s bodies while their minds remained crisp.
“While this article may seem a bit far afield for this website,…”
I would say that these on-the-ground illustrations of science corruption and scam are important to report. They are now everywhere as the Financial Crime Wave seeks new areas of the economy to corrupt with their criminal profits.
Another famous case of the failure of Medicine is that regarding peptic ulcers. Two Australian doctors discovered the cause of peptic ulcers but “The discovery was met by deafening silence from the medical community and created great anxiety within the pharmaceutical industry.” See this link for the full story of how Big Pharma and corrupted docs continued with improper drug treatment for these ulcers:
Lots of needlessly harmed and dead people due to our failed economics. Maybe some economist should start counting them.
“Lots of needlessly harmed and dead people due to our failed economics. Maybe some economist should start counting them.” – Skeptic
Someone has made an effort to tabulate some of the people who have lost their lives as a result of oligarchic economic mismanagement:
Greenspan’s Body Count
Hah! Central banking killed 50-65 million in WWII alone since the Great Depression was a (the?) major cause of it. Not that Greenslime is innocent of manslaughter by any means.
Antibiotic treatment to eradicate h. pylori in PUD is mainstream therapy and has revolutionized the treatment of ulcers in the US. It’s very effective. Proton-pump inhibitors and other antacids may be used to reduce acid while the stomach or duodenum is healing, or when ulcers are caused by irritants such as NSAIDS.
H. pylori isn’t found in US children but is present in 30% of adults (50% globally). The incidence of infection increases with age, as well as unsanitary living conditions. Infection is found in 80% of US adults with gastric and 90% of US adults with duodenal ulcers however. What isn’t understood is why some people infected with h. pylori develop ulcers while most don’t. Infection is easy to test for, and should be done both before and after treatment. I don’t know how ulcers are treated in Australia but here in the US, eradicating h. pylori, if present, is considered the accepted treatment.
The example of H. pylori as the major cause of ulcers was not a failure of medicine. At the worst it was an example of a researcher coming up with a totally new idea that was only slowly (over a decade or so) given serious consideration. This is not that uncommon in science — really innovative ideas are often not readily accepted. Even Planck’s idea of the quanta took about 15 years before it was seriously considered as a possibility.
Today H.pyliri caused ulcers are treated with antibiotics practically eliminating chronic ulcer disease. The discoverers were awarded the Nobel Prize in Medicine.
Huh? This is a serious candy-coating of the history. The researcher’s work showing the connection between H. pylori and ulcers was repeatedly rejected from medical journals, including narrow specialized ones. It was not “only slowly” given consideration. It was rejected with hostility for a long time (more than a decade). And I don’t recall precisely when this occurred, but it was only when the lead researcher injected himself with H. pylori and got an ulcer did he begin to get traction.
I was on the faculty of a medical school in microbiology when this paper was first published. I have no idea how difficult it was for them to get it published. This was in the mid 70s or so if I recall. At that time it was a paper that elicited interest and comment among my colleagues. Much skepticism to say the least. But among microbioligists and infectious disease types they liked the idea — why it suggested that what was considered an incurable disease by the GI community might be cured with antibiotics. In any case it took only about a decade for those initial findings to be confirmed and antibiotic therapy become generally accepted. I do know that by 1992 that this question had been settled in the minds of most physicians.
Thanks so much to reading and commenting. My biggest hero’s as a child were med profs (I grew up in a college town) and the changing medical landscape has been hard on the profession.
I’ve had Lymes twice, fortunately treated early, but was very ill for months and then months of recovery. The fact that there has been a media blackout and such strong institutional opposition to research, treatment, and even the existence of the disease shows that there is something huge that someone does not want people to know about. My hunch is that after the people die whose careers and reputations are in danger of what the truth is, then we will start seeing some action on Lymes.
It could be that this was a biological experiment/weapon that the government has been trying hard to run away from responsibility and liability for, or somebody a long time ago did a really good study using the computers they don’t grant academics access to that showed conclusively that the disease was both persistent and its spread could not be halted. The costs of permanent treatment for those millions who would one day be infected would be so high that all efforts should be made to avoid the dissemination of said knowledge. And so the testing and treatment regime for this disease became frozen twenty years back.
Like the magic question, “where did the post-9/11 anthrax really come from and who really sent it?” it is unclear that we will ever really know.
There are a lot of accusations of bad intent in every war. I just want the war to stop. I want the CDC to appear like they are working for the patients, and not the insurance companies.
In 1994 I tested negative for Lyme Disease despite exhibiting 23 of the 46 clinical symptoms. Research I consulted independently stated that the test I was given suffered from a huge percentage of false negatives, and that the existence of Lyme could only be determined clinically. I finally obtained the antibiotic only by demanding it in a fax to my doctor, who relied exclusively upon the test.
IMHO, anyone who thinks he has it probably does. Check the clinical symptoms. There are probably more these days.
Ticks. I hate em! They may be part of the Curse but I don’t see why we can’t design a bio-weapon to forever eliminate them and fleas too and deer flies …
My experience was just about opposite yours.
My doctor suspected I had Lyme disease, said the test was very inaccurate, and suggested going straight to antibiotic treatment.
I feel the CDC is likely being properly skeptical. However, if work continues maybe something will eventually emerge that is a reliable indicator for Lyme. What little I know about the search for biomarker type tests is that the results are fraught with issues and a lot less reliable then initial reports like to make it sound. It is rare, rare, rare for something to be truly good for clinical use; 999 times out of 1,000 it won’t be good. Sensitivity and specificity are usually way over-estimated when you send known samples to labs (too easy to classify compared to what real clinical samples are) and that’s just the beginning of a whole train load of methodological issues. It is just so very hard to get all the spurious influence out of work and it really only happens after multiple efforts with various methodological differences are seen to converge toward a common outcome.
Nonetheless you are right that political and corporate interests influence science and medicine. I think there are better examples though and the CDC is not the prime culprit but actually a pretty good gatekeeper compared to industry science. A really good book on the topic is “The Secret History of the War on Cancer” by Devra Davis. She depicts how medical /epidemiology research careers have depended on points of view served and she describes having delayed writing frankly about the matter until her career was ending so as to have a career. There are other really interesting stories in her book, including the history and behavior of the American Cancer Society and other cause marketing entities. She further describes the selective prosecution/protection of certain Nazi era scientists according to their use-ability for certain post-war goals. Corporate interests are the real powerful holders of health secrets, etc., including mostly famously (but not exclusively) the tobacco industry.
There are really good people in science, too. It is just very hard to do. To be human is to be fallible.
While the CDC might perhaps be unduly swayed by outside influences in isolated cases, I doubt anybody would seriously argue that they don’t adhere to sound scientific practices, with the public deemed to be the intended benefactor, not corporate interests. It doesn’t require training as a biogenetic researcher to see problems with Sapi’s methodology.
Other posters already addressed the problem of finding strains non-endemic to the US. The last paragraph on Medscape says that samples believed to be positive were checked using a method, polymerase chain reaction, known to be prone to contamination, also verified by previous posters. IOW, an unreliable test was used to verify the reliability of the test under study. But control samples were checked for presence of Lyme spirochetes in prepared microscopic slides only, not using the PCR method. Methods must remain consistent for all samples.
“Start with N known infected samples, and N known uninfected samples and send them blind to the lab.”
The “test” again fails here. Nobody was blinded. Blind studies, double-blind if possible, are considered the gold standard for eliminating research bias, at least for trials beyond the preliminary stage. Sometimes blinding isn’t possible for different reasons, e.g. treatment side effects. This is not one of those times. The testing lab at minimum should have been blinded to control group/diseased status. Those collecting the samples should have been blinded as well. The CDC should only validate research that uses standards designed to minimize the introduction of errors.
The CDC has not banned the test. It only stated that current data is insufficient to prove or disprove the reliability of test results, a reasonable conclusion. The title of the article didn’t state the test was a failure, only that it hadn’t withstood the necessary scrutiny that a determination on its reliability could be made. Hopefully further clarity in diagnosis and treatment will come soon for those suffering from the symptoms of chronic Lyme disease
“The CDC has not banned the test.”
But they have signaled to the universities that the CDC does not believe the results. They have created a citable objection that makes it impossible to use the test for research. They have identified the test as a target.
It has taken me years to accept the bald fact that the CDC is behaving with extreme bias. Examples are numerous, but require going into detail to demonstrate, of course. Once demonstrated, the thoughtful reader is left with his mouth agape. For anyone who wants to study, instead of assume, I recommend Pamela Weintraub’s masterful book, Cure Unknown: Inside the Lyme Epidemic. I have always been a skeptic, but things are worse than you think. For starters, using the Western Blot test for diagnosis is unscientific, as the Western Blot was developed for surveillance purposes only. There are readily discovered monetary and reputation reasons for choosing the Western Blot. Second, anyone familiar with the history of the disease and the history of the research is left to shake his head in wonder at the patently ridiculous claim that Lyme is “easily detected and easily treatable.” Although the IDSA has backed off slightly from their initial insistence that chronic Lyme simply does not exist, they have a long way to go. It is not scientific to make up a psychological diagnosis, Munchhausen by Proxy, as an explanation for signs of an epidemic. Despite the fact that there is zero research indicating the existence of such a psychological disorder, the same researchers who claim to be carefully weighing the evidence have thrown this diagnosis around with abandon in the face of suffering, dying people. Similarly, it is not scientific to explain away results using made-up reasons, such as that lab contamination occurred, yet these are precisely the kinds of biased, unscientific claims that the CDC has been making in the Lyme wars. To give another example, at one point in the 1990’s the CDC was simultaneously manipulating the results of two different studies, one in New Jersey and one in the midwest. In one case, they chose to rely on patient reporting of rashes and onset of symptoms years after the fact and threw out all physician reports made at the time of the diagnosis. In the other case, they explicitly denied the reliability of patient reports and insisted on clear physician records of the rash and the onset of symptoms before considering results valid. These two opposite approaches were being pursued at the same time by the same lead researcher, and in both cases the choice led to “confirmation” of the CDC’s stance.
One other quick example from the estimable Weintraub: In 2007, the CDC’s Ben Beard responded to Weintraub’s contention that the two-tiered test at the very least allows some people to fall through the cracks. Beard shocked Weintraub with the reply that the CDC feels the test is nearly 100% sensitive. Even in the cases of neurological symptoms (considered “minor” manifestations by mainstream researchers fitting observations into pre-conceived notions), Beard referred to a study proving his case, a study published in the prestigious Journal of Infectious Diseases. Stunned by a certainty out of step even with the manufacturer of the two-tiered test, Weintraub investigated and the answer was simple. Beard was using circular logic: Only patients already testing positive on the two-tiered system were allowed into the study he had referenced; it was an entry requirement.
Unfortunately, one must study the long-time pattern of such blatantly biased interpretations of results to begin to accept that even our cherished CDC seems to have suffered the corruption which seems to be flourishing in so many of our public institutions today. Please do not assume that the Lyme wars are a case of an honorable if flawed scientific sector and desperate, hysterical patients. The history paints a much darker picture. No, the CDC cannot be trusted when it comes to Lyme Disease, and it is worse than the scientifically minded among us would like to imagine.
I’ll end with one tid-bit as an example of how much more complex the disease is than is being acknowledged and widely addressed. Yves mentions the three types of bacteria. In fact, there are several. This spirochete is a shape shifter. In any given region, there is a mix of strains, and the mix varies from region to region. (The dominant B31 strain is genetically identical to the strain in Europe, btw.) In one experiment, 20 strains were found up and down the east coast. Of these, 6 did not infect humans and 10 caused only a rash. Only 4 of the 20 can leave the skin and invade other tissues. These results alone throw into question all previous research based on the assumptions of only one form of Lyme which always produces a rash. Today, all 1800 or so proteins produced by every strain of B. burgdorferi has been identified. The old two-tiered test is hopelessly outdated. Why is the CDC standing in the way of progress? Who can say, but there are enough monetary considerations to provide one possible explanation.
Oh, and several prominent CDC researchers have financial interests in possible vaccines, just to point out one of several possible motives other than serving the public interest.
Thank you for taking time with this issue. It is my opinion that people are accusing her of using contaminated samples because they don’t want to deal with the issue. I had lyme undiagnosed for 18 years. Despite obvious clinical symptoms I was denied treatment because of a negative test. I was 11. My life was crazy hard until I was tested again with the Western Blot and found positive with very high numbers just shy of my 30th birthday, and now I am finally getting treatment. Six months in and we just started going after the bio films, which has brought back joint pain I haven’t had in years. Good! The spirochetes are exposed and we are killing them. We are being treated the way AIDS patients were being treated when the disease was still new- disgracefully. So many people I know are suffering with a crappy treatment plan, one that was too short, or no treatment at all because insurance won’t pay and they can’t do it out of pocket. Lyme suicides are frequent and it is so sad. I spent a lot of time wishing I could just die. But now I am getting well and living my life! It is glorious! We just want to be well. Why does the CDC want to deny so many suffering people proper diagnosis and treatment?
Oh dear Yves, you should stick to economics. This topic is extremely controversial. Chronic lyme disease and treatment with long term mega-antibiotics should be considered in the realm of pseudo-medicine. It has replaced chronic fatigue syndrome as the disease of choice for hypochondriacs. I notice above that someone is trotting out Devra Davis as a cancer authority without mentioning that she is a major advocate that cell phone radiation causes cancer. Just more quack medicine.
This debate is not relevant to the CDCs decision to not approve an improved test for Lyme disease. Research into Lyme disease is well supported and it is always the goal of the NIH and the CDC to improve infectious disease diagnostics. They would have no agenda to refuse an accurate test.
The problem is that any decision involving Lyme disease treatment and diagnosis will bring out the quacks accusing the establishment of suppressing their notion of truth.
There are quacks in every debate. But there are also serious scientists involved in this. Columbia University has a research center specifically dedicated to Chronic Lyme disease.
But the point is that research should not be political. The reason this topic is controversial has nothing to do with science, it has to do with a medical society becoming a quasi-regulatory agency that could dictate what treatments were insurable and what treatments doctors could use if they wanted to keep their medical licenses (yes, there were 50 investigations of MDs for not following voluntary guidelines.) and that medical society was sued for anti-trust by the state of Connecticut. The bad blood is due to the war. The cost of the war is the destruction of science and fear by doctors. The patients lose. The CDC does not seem to be acting in good faith to say a culture test failed when they never reviewed the culture test, and made assumptions that are hotly debated.
Either side of the debate may be right, but there is definitely a position for anti-corporatist activism when a government appears to be interfering with research.
Bob this comment by you raises an point: “it has to do with a medical society becoming a quasi-regulatory agency that could dictate what treatments were insurable and what treatments doctors could use if they wanted to keep their medical licenses”
Yes modern medical societies have been quasi-regulatory going back over 100 years. They define what is considered valid medical practice and what is not. Insurance companies follow their guidelines. Here are two examples. The use of chiropractic therapy is not covered by medical insurance because modern medical societies do not accept many of their claims. I happen believe that some of the things chiropractors have real benefit, but also know that some of their medical claims are complete nonsense. This is a debatable example. The next one is not. Modern medicine completely rejects homeopathy and no medical insurance will cover the costs. This is a medical treatment that not only rejects modern medicine but also rejects the atomic theory of matter. Pure junk medicine and junk science.
Having said that I agree that many patients who have had Lyme disease do seem to have developed long term symptoms that certainly could be called chronic Lyme disease. But there is no evidence that viable borrelia spirochaets are causing the symptoms. We have a good precedent for what might be happening — tertiary syphilis, the result of another spirochaete infection, is not the result of active infection. It is something else though I don’t know if it has properly described yet.
I would classify myself as “Anti-war” activist, more than a “pro-chronic-lyme” activist. So I feel comfortable saying that there are two bodies of independent research that reach consistently opposite conclusions on this exact point.
The IDSA medical society actions are the most political to date (on both sides):
* The society was actively involved with the investigation or prosecution of 50 doctors for using practices that were common before they published their voluntary guidelines.
* Insurance coverage was drastically curtailed due to the actions of a medical society.
* A state sued the medical society.
* Six states passed laws to protect physicians from being subject to the guidelines.
That is what I meant by quasi-regulatory, and not the 100 year old tradition of summarizing best practices.
Thanks again for your participation.
Here is a link to an outline on my research so far on the Lyme war, which I think is pretty balanced, but may never complete.
Regarding European strains, there are lots of doctors around the Louden County Area in Virginia (one of the most Lyme dense regions of the country) who are testing their patients for the strain of Lyme disease and coming up with European strains in people who have never been to Europe. Among clinicians who work with patients every day it is commonly known that European strains are in America. The CDC does not have good data on this because there is not surveillance.
Unfortunately, the CDC often mistakes its lack of evidence for proof of a negative. For a long time the CDC denied the the prevalence of human babesiosis within the Eastern United States even though there was (and still isn’t) no mandatory reporting of the disease in areas where it was endemic, and most doctors were so poorly educated on it that they didn’t even know to test for it (let alone report). The CDC has now been forced to acknowledge the problem due to massive babesiosis contamination of the blood supply. Within the history of epidemiology, denial of the infection has long been coping strategy of societies. The establishment of modern science and elaborate bureaucracies to manage it have not changed this human impulse. It will always be the case that activism and persistence is required to overcome incumbent ideas.
Thanks for your work, Bob and your article, Bob. It is much needed in this area.
Yves, this is a great article. ToivoS—-instead of presenting your perspective in a respectable manner, you resort to name-calling and belittlement. “Quack medicine”? Fundamentally, electromagnetic radiation is akin to the radioactivity resulting from the weak nuclear force. To deny the radioactive effects of RF devices is to deny the effects of radioactive decay we find so evident naturally in certain elements, and man-made with our atomic weapons and power plants (same thing, really).
Oh, ToivoS, you should make sure your concepts are sound before ridiculing others.
Thank you for publishing this. I believe it is fully within the remit of an economics blog. Indeed there can be very little that would not be.
My supposition is that Wiki editors are also CDC staff. My greatest concern is that bits of Wikipedia might become unreliable because trusted staff are not presenting all aspects of an matter equally.
Theresa Russell (one of the authors of the CDC rebuttal) admitted to me personally that the contamination issue was a mistake, never done publicly to my knowledge. Claimed they did not know lab strains were kept in New Haven. Totally destroys any credibility of the CDC.
The argument that the “contamination” was somehow isolated to the “New Haven” lab is a meaningless argument. The scientists and other people visit both sites obviously. The culture medium was developed in New Haven but is also used at the test sites. People and equipment travel between the 2 sites. So the sites are NOT biologically isolated. I would suggest the results of the CDC analysis strongly imply the “contaminant” MUST have traveled with one of the people or in equipment or in culture medium etc… rather than this is somehow proof the CDC is wrong.
For over 20 years, dozens of independent scientists have been looking for Borrelia garinii in ticks and host reservoirs in the US using very accurate PCR and nested PCR. Borrelia garinii has NEVER been found in in the US while testing many thousands of ticks or hosts or humans. They knew this species was common in Europe and Asia so were looking carefully. Its true the US 2 tiered test for humans rarely catches B garinii but its the tick and host testing with PCR that prove B garinii is at best rare in the US.
So just finding 27/51 or over 50% B garinii in humans from across many US states is just not plausible. If they had a found a few, that would be possible, but not over half. That alone is a Big Red Flag. So if 27/51 were B garinii, then where did they come from? Contamination is most likely. The pyrG gene they mention is a 603 character section of DNA that is a housekeeping gene often used for phylogenetic studies of Borrelia. It changes slowly but in the NCBI database of every B garinii pyrG gene ever sequenced in the many dozens, only 2 have identical pyrG genes. One of them is the FujiP1 strain used by ALS to test the culture medium and the other is the PBi strain. That means only 2 B garinii out of dozens have identical pyrG genes in NCBI. Out of the 27 found in the study, 21 had this identical pyrG gene.
The other 6 had 1 nucleotide difference. Sequencing has an error rate so the 6 are probably just sequencing errors and all 27 are identical. In any case, what are the odds, a species never before found in a tick, a host or a human using sensitive PCR and nested PCR nevre found B garinii in the US while ALS found over 50%… Not likely. Not all the scientists searching for B garinii in ticks and hosts were somehow part of a conspiracy or all made the same error. What are the odds 21 of these ALSO have identical pyrG genes when only 2 strains of B garinii ever sequenced also have identical pyrG genes. The odds are near ZERO.
The Lyme community appropriately has argued the CDC 2 tiered test has serious problems. This is correct. It does. So now, why in the face of obvious logical evidence the culture has problems would they rather believe the CDC is somehow evil liars and 20 years of searching for B garinii is somehow wrong. All tests can and do have problems. Maybe ALS will go on to correct the contamination problems and the culture will be validated. Lyme cultures do work. Its been proven but have low sensitivity especially in late disseminated Lyme since the spirochete count in the blood is very low. Its a bummer but sometimes the truth hurts.
The culture didn’t fail. You were talking about the PCR which is a separate test.
Also, see earlier comments on genetic drift, tick distribution and borellia species migration.
Also all of the tick and human tests you discussed were in endemic areas, not national, and PCR is not considered useful on humans, and were only done on one tick species.
There are many aspects to this issue.
Another point on the lyme debate.
Everyone should see the documentary, ” Under our skin “.
Aside from a debate as to what is going on in the labs,and the wisdom/knowledge/science there. There are the people who have something.There are people trying to help. There are people trying to stop people from trying to help people with chronic lyme disease. There are the “board” members, who get to decide, almost all of whom were on the payroll of various industry regulars who would see a detriment to their bottom line profits were they to try and “help” people.
There is room for the debate of science, what are the laws of nature, and what is important.,But on the surface, the scientists are in the back seat wherever the businessmen want them to go, or not to go.That is the issue.
While there is the arrogance exemplified by toivo s up thread,which has the major liability of having ones head too far up his own behind to see the forest thru the trees.The reality is that something is up, and it should be being “looked at”, before being dismissed.
After all, doctors kill more people every year thru mistakes and misdiagnosis, than do guns, and drunk drivers combined.
This is a perfect example of how the war was lost: nail, shoe, horse etc. as without an accurate and/or much more definitive test we lose this war. It does go back to the basic question: Why isn’t the CDC demanding a better and more direct test (one not predicated on our immune responses to certain proteins)… and/or more research to get there? Borrelia are amazing organisms able to hide in various tissues and cells and biofilms. Able to change form during inhospitable situations making them even more difficult to culture or identify. The answers will be found at the microbiological level as the pathophysiology is much too obscure and even less well understood.
The CDC recently acknowledged that over 300,000 cases of lyme occur annually in the U.S. after narrowly defining lyme for decades and admitting to only about 30,000 cases per-annum. Many in the lyme community have suspicions that this was only announced to the benefit of Baxter and their new lyme vaccine.
Of course, no one can explain why a disease the CDC considers “hard to catch” and is easily eradicated with short courses of antibiotics needs a vaccine at all ?
There isn’t a scintilla of evidence that 2-4 weeks of an antibiotic eradicates borrelia. However, there are 77 peer reviewed studies showing the persistence of borrelia after antibiotic treatment.
How many more should be conducted ?
To answer the question why is the CDC blocking an accurate lyme test ? Just read the Connecticut Attorney General’s report.
The following petition provides evidence to suggest that Lyme disease has been intentionally mishandled. The petition has generated 16,387 signatures and 190 pages of heart wrenching stories from disabled Lyme patients across the globe.
Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF
Please sign this petition and forward it to others.
Letter to the Editor, The Lancet Infectious Diseases Published May 2012
The question in my mind is why the CDC insists on the two tier test, not just for surveillance, but for clinical use, despite the fact that it misses so many cases. Their officially blessed testing is based on just one strain of Bb, when there are many strains, and if they cared to look, other species too. In fact, there are published reports of other species in the U.S. already. How about just looking at the literature? There are also other species of babesia in U.S. patients, including B. duncani in the east, when officially it is only on the west coast.
What astounded me was when the CDC sent researchers to the Midwest to collect 50,000 ticks to find one tickborne virus. Meanwhile those ticks could have been checked for other bacteria just as well. Or are they only good at finding viruses, not bacteria?
Why is the CDC is not working with the doctors who have treated the most cases to find ways to improve testing and treatment. They are not doing this, but rather impeding advancement in every way possible. It makes one wonder whether this rot is throughout the whole institution or restricted to just certain areas. If just in the lyme area, why is the management not doing anything about it?
It has never been why some people go bad or are just incompetent, but when they are part of a bigger entity, why there is no oversight and correction made.
There is little doubt the first attempt ALS attempt at validation was flawed. You don’t need to do a DNA pyrG gene comparison with the test strains to see there was serious problem. You don’t even need the Johnson analysis. The 72 Lyme patients were recruited from 15 US states including CA, AR, CT, NH, NJ, NY, MA, MD, MN, OR, PA, TN, UT, VT. So they were drawn from a wide geographical range suggesting fairly diverse strains. Of the positive 51 samples, the ALS paper phylogenetic tree shows 27 of the 51 were a Borrelia garinii strain. This is not contended. This would be a major Borrelia scientific study finding over 50% B gariniii in humans given B garinii has never been found in 1 US patient ( infected in the US), or a US tick of many thousands tested or any host reservoir. It should have been a big red flag for ALS and they should have stopped and investigated. B garinii has only been found in abundance in Europe and Asia, not the US. Just finding over 50% B garinii is implausible. If they had found a few, it would be plausible but not over 50%.
Since B garinii is well understood and has been studied in Europe and Asia, the 1000’s of ticks tested by sensitive nested PCR here in the US would have found “some” if it was common here. They have not found any in the US and a few in ticks on shorebirds in Newfoundland. So irrespective of the pyrG matching issues, just finding 27/51 B garinii is near proof of contamination. A strain of B garinii was used to test the culture media so it was in the lab and could have been transferred in the medium or other equipment. It turned out that 21 of the 27 B garinii found had identical pyrG genes. The other 6 had a one nucleotide difference which was probably a sequencing error.
Of the 27 B gariniii found, the 21 that had identical pyrG genes suggests strongly they are closely related since a search of the NCBI database shows very few Borrelia garinii strains have identical pyrG genes. Out of dozens of B garinii strains collected over years, only the PBi strain matches the 21 identical pyrG genes AND the FujiP1 strain used to test the culture medium. The 21 identical Borrelia garinii are a match to the Asian Fuji P1 strain based on an NCBI lookup. For example: another Asian Fuji P2 strain pyrG gene is 97% or 587/603 relative to the Fuji P2 strain – 16 different nucleotides out of 603. Finding 21/51 identical B gariniii pyrG genes is unimaginable.
Its sad this culture validation had contamination problems since a culture is a valuable testing tools not available to clinicians. The Lyme community needs to be cautious and be looking for “truth” and claiming fraud when promising tests have problems just like the horrible CDC 2 tiered testing. Its known a Lyme culture can work. Gary Wormser achieved almost 50% sensitivity during the acute phase. Once the Lyme spirochete disseminates, it hides in tissues and the number of spirochetes in the the blood drops very low. This is why blood cultures have difficulty in late disseminated Lyme. There must be enough spirochetes in the blood sample to begin a culture.
Another suspicion is the Lyme spirochetes down regulate their genes in such a way that they can become uncultivable. If this is true then its one more barrier to a successful late disseminated culture. I would suggest a highly sensitive nested mRNA PCR be used in late disseminated patients. Even if the the spirochetes have become uncultivable or even difficult to culture, the presence of mRNA is the next best “test” for living spirochetes. It takes living machinery to transcribe DNA to mRNA ( messenger RNA). Even a down regulated spirochete that is uncultivable must transcribe its DNA to mRNA. It a complex process and can only happen in a living organism. DNA is very rugged but mRNA degrades very quickly. So if someone is suspected of having Lyme spirochete persistence, the finding of mRNA months after treatment is the next best proof to a culture and potentially more sensitive.
So if the ongoing validations don’t work out, an mRNA test might be worth pursuing.
IDSA will not accept PCR because there is no proof that the spirochetes are still alive.
You are making all of your genetic drift arguments based on the distribution of garnii in Europe. You cannot have it both ways, first to say it is not here, and then to say if it were here it would be broadly mutated.
And again, these are DNA arguments, not culture arguments.
That reminded me of something. Newly arrived organisms have less genetic variation than the population they originated from. An article from 2008 has said new genetic data show that borrelia burgdorferi originated in Europe, not America. If they were right then B. garinii would be a newcomer and would have less variation than the European type, which might explain the lack of variation in the samples from the lab we are discussing. However, it leaves me wondering why Bb ss causes the most disease in the U.S. Is that because other species in the sl group are not here yet or here in lower numbers. We know it is not true that Bb ss causes all disease in North America.
Very interesting, anonymous. Sounds like you know something about this. What I am wondering is whether this mRNA test will work on blood if the spirochetes have departed to organs, joints, etc. or have changed into cyst, bleb, other shapes. I am doubting that there has been enough work on these alternate forms to know the answer, especially since the establishment/IDSA have said either that they don’t exist or they are not a factor in persisting disease. If you deny that something exists, you are not going to be investigating how it affects testing results. Anyone who denies them cannot be trusted to have honest opinions on testing.
The value of mRNA testing is it proves a living organism is present like a culture does. A DNA PCR test only proves a living organism once existed. When a living organism dies, its DNA begins to degrade in vivo slowly but DNA is intentionally rugged and protected from degradation by a number of processes. mRNA on the other hand is the RNA copy of DNA being transcribed into a peptide or protein. It only exists long enough to build the one protein its defined to produce. Then it degrades quickly and there are intentional degradation processes in our bodies to degrade our own mRNA. So mRNA only exists when an organism is living and transcribing proteins.
So if you find Borrelia mRNA in human blood months after treatment – long enough for it to degrade – then it proves a living organism exists. Even a cyst or uncultivble form must perform transcription so leave mRNA around. Just like DNA PCR or culture, the organisms must be present in the blood to find them. So if a culture can work, so can a highly sensitive nested PCR or nested mRNA PCR. By using a large enough quantity of blood and performing the test multiple times, the odds can be increased. If a culture can find Lyme in your blood, a properly done PCR or mRNA PCR can also. But a DNA PCR only proves Borrelia was once there. A mRNA PCR proves its alive. Given enough blood, the proper nested mRNA PCR can prove a living Borrelia is in your blood even when the Borrelia have taken a form that are not cultivble.
To my knowledge, nobody has done a nested mRNA PCR on a human blood looking for persistence. A recent study was done in a test tube looking for mRNA to determine how long it took to degrade from living Borrelia due to antibiotics. This was done in a test tube without the machinery/enzymes in vivo and the mRNA degraded in a few weeks. In vivo ( inside a human) this degradation would happen much faster since all the enzymes and our immune system are there. So the mRNA probably last only hours at best once its used.
A properly done nested mRNA PCR should be able to detect only a handful of organisms. Similarly a culture requires more than one spirochete so the sensitivity should be comparable given a large enough blood volume ( more spirochetes) and multiple tries and possibly trying to stimulate spirochete movement out of hiding with antibiotics or other drugs.
Here’s another thought.
If indeed there was contamination, then that is fixable, right? So, maybe the lab admits it, moves on and makes this work. Meanwhile, tit for tat, the CDC should admit the failings of the two tier test which has caused so much damage, and is a public health disaster. They also do not admit that lyme can be chronic.
So, if you want to weigh the damage that has been done by the two contenders here, this is what it looks like:
People with lyme symptoms, possibly even positive CDC two tier testing at some time in the past or suspicious bands, or other reasons to suspect lyme have gotten positive culture results that were actually lab contamination. Some of these people may even have had other evidence of tickborne disease by positive coinfection tests. As a result, these people are not going to be comparable to a random sample, they are a lot more likely to be truly positive. And this helps them get treatment. Their response to treatment may help confirm the results.
On the other hand, people who get false negative results on the CDC’s two tier test, or they only test positive on one of them, may not get any treatment. And the result of this is chronic debilitating conditions, and some deaths are recorded (probably nothing like the real occurrence). Insurance or some doctor may even say a positive result is a false positive or only reflects old exposure (even with symptomology) and not treat the patient. This is why direct tests are needed, instead of indirect antibody tests. The CDC has been told this for years and has not budged or admitted anything, or tried to improve testing.
So, who has done the most damage here? My vote is for the CDC. Seeing them criticize the culture test is like the pot calling the kettle black. This is complete hypocrisy.
Why does the Red Cross think that there is such a thing as Chronic Lyme?
copied from http://chapters.redcross.org/br/northernohio/INFO/eligibility.html
Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed.
Those with chronic Lyme disease are not eligible to donate blood.
I can donate blood because although I do have very chronic signs of Lyme disease and have been tested positive many times and negative only one a single WB test that was called Euro-immune, my medical records state that I MAY OR MAY not have Lyme disease. Most of the serious chronic conditions I have are not recognized as Lyme symptoms in my area even if they are in other areas.
Until they come to some conclusion, I am assumed to not have Lyme despite the many positive IgG results; therefore I don’t qualify for treatment other than for the original 2 weeks of Doxycline100 after which I still had positive IgG.
If they can’t come to a conclusion they can’t tell me to not give blood because I have Lyme.
The reason the lyme community immediately assumed the CDC was wrong about the culture test is that they usually are wrong about lyme. How could anyone know that they might be right this time? But I guess even a blind pig finds an acorn now and then.
“Anonymous” suggests a PCR test instead. However, the CDC has already ruled out PCRs because they are also said to be susceptible to contamination. They offer us lousy two tier testing and denigrate everything else. This does not inspire confidence.
When I said the CDC might be right on this, that meant MIGHT not WAS. We still need to see the validation studies done. They have failed so often, we should not assume anything here.
If contamination happens in a lab, then the answer is to remove the contamination, not dump the test.
Hold on here a minute. We should not be accepting what an anonymous person is saying about this test. The other readers of this blog will not know whether the facts and interpretation of them are correct. This is too one-sided to just throw up our hands and concede that the testing results were a product of contamination. There have been trolls who show up and say this kind of thing, knowing few would have the background to rebut it.
So, let’s not think this is gospel. Wait for the other side to be told.
The problem with this war is that everybody takes a side and shoots down the other. With a good test, the war could end.
Bob, you have hit the nail on the head. This issue is over the DNA, not the culture. Whether or not the spirochetes grown in the culture were those of patients or lab contamination, they did grow. There are pictures of these spirochetes in the Sapi paper. And the difference in that culture and other less successful lyme cultures is that collagen was added, and possibly other modifications of technique.
So, the CDC should not call the culture into question, but rather the identity of what was grown.
Here is a quote from a textbook on molecular genetic testing, chapter on PCR:
“However, the increased sensitivity of nested PCR carries an increasing risk of contamination as a result of the additional manipulations that are required to perform the consecutive PCR reactions.”
One would suppose from this that the objections the CDC would have about PCR testing contamination would be X 2 for nested PCR.
Bureaucrats and scientists put opinion and bias above fair analysis, as do most people, us being a political species. Left unsaid above is that insurance companies don’t want to deal with the cost of another chronic disease, and the new test would show that Lyme disease could be chronic.
How do we de-politicize big businesses like insurance and big bureaucracies like the CDC? We make them responsible to, and beholden to, the patient. Researchers and officials should not get their paychecks from a central, powerful source but from many clients. That would introduce the discipline of the market.
To introduce the discipline of the government, politicians and bureaucrats need to be free of corporate influence. Corporations should not be so big as to wield so much influence. That calls for reforming limited liability of business and empowering consumers with shares of society’s surplus, happening now at progress.org.
I find it interesting that the Red Cross won’t let me donate my blood for reasons that the CDC say don’t even exist, Chronic Lyme. There seems to be quite a distinction by the Red Cross.
copied from http://chapters.redcross.org/br/northernohio/INFO/eligibility.html
The other listings around Lyme are alphabetical and for point of reference if you look for it.
Accept those with infectious mononucleosis (“mono”) once the infections has passed, as long as the person did not have hepatitis.
Intravenous Drug Use
Those who have ever used IV drugs that were not prescribed by a physician are not eligible to donate.
Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed.
Those with chronic Lyme disease are not eligible to donate blood.
Wait for 3 years after completing treatment for malaria.
I would think this might be a contributing factor.
Compositions and methods relating to lyme disease :WO 2013110026 A1
Publication date: Jul 25, 2013
Filing date: Jan 21, 2013
Inventors: Theresa M. RUSSELL, Barbara J.B. JOHNSON
Applicant: The Government Of The United States Of America As Represented By The Secretary Of The Department Of Health And Human Services, Centers For Disease Control And Prevention
I’m more and more convinced I have chronic Lyme. I should’ve realized it years ago (i’ve been bit by ticks more than once) but I just went with the made-up label “interstitial cystitis.”
A few years ago, I read briefly that long-term antibiotics could resolve *many* cases of IC (despite the official propaganda that there is no cure). This is identical to the treatment for Lyme.
I read that culturing was the only way to isolate the bacteria that causes IC. Same as Lyme.
But then I tucked it away in the back of my brain and forgot about it.
Then one day my subconscious, I guess, told me to Google IC and Lyme, and whaddya know, lots of correlation.
I thought back to the unsuccessful treatments I’ve been through. Doxy+ azithro had cleared all my smptoms within one week, but then once I got off the limited course (which the docs refused to extend) the symptoms slowly came back.
Then they gave me Cipro, but only a 2-wk course. It gave me nothing but side effects after just a few days (knee tendon getting sore just from walking, which isn’t cool. –Cipro causes a lot of ruptured tendons). So, I forgot about that and went to natural stuff.
Garlic seemed to suppress the flare-ups, but my stomach and GI tract don’t take consistent garlic use very well, even with food. I don’t have the cast-iron stomach many people seem to have. I rarely use ibuprofen for the same reason (not to mention it’s toxic, and doesn’t always help).
Hops, bromelain, turmeric and quercetin are all godsends. I wish I could afford to take all of those items every day, in sufficient quantity to stay inflammation-free. On my barely-existent grocery budget, I have to skimp on these items if I can afford them at all.
A bunch of pineapple and grapefruit (with inner rind left intact) every day is a good source of bromelain, quercetin and vitamin C. Adding cayenne helps your cells get more out of those ingredients.
Juicing cabbage and greens and eating lots of whole veggies, fish, nuts for Omega 3, and a probiotic superfood like homemade sauerkraut, are all very helpful too, especially if you can do those things consistently.
Now last fall, during a business trip, I happened to meet a guy who grows not just organic but BIODYNAMIC ORGANIC cannabis. He smoked me up — my first time in a couple years — and I realized I stopped hurting even without wolfing down my regular bowl of pineapple that day. On the way home, I managed without having to pull over every half hour to go pee. That was awesome! (Thanks, “bud”)
Both IC and Lyme, by the way, are helped by marijuana.
Looks like the same condition to me.
The problem is, I’m unemployed. I can’t even afford to buy weed.
Now our State government’s gotten into the weed biz and they will probably make it available free or cheap for those with an Rx who jump through all the hoops and get all the necessary permission slips. For the vendors, however, there are a million regulations and taxes. They will probably even try to control the strains grown. Much as I want to feel good, I’m not feeling this marijuana mercantilism. I’m gonna pinch my pennies, get back in touch with my old supplier, and try to work out a deal.