Thursday, September 18, 2008

Urban Myths

One of my patients was quite confused. She told me that she had a hard time reading my blog because everything else she read on the Internet seemed to contradict the things I say. It is so hard to ferret out what is true. Of course the things I write about here are my opinions. But I try to put a lot of thought in the things I write. The community of folks who take chronic Lyme seriously are ridiculed by mainstream medicine. A patient I saw today was told by her neurologist: "Don't see those Lyme doctors, they are bull...." There is very little information about the clinical aspects of the disease which comport with the strict standards of evidenced based medicine; the same thing could be said about most of what "mainstream" doctors accept as gospel! For example, I attended a very interesting lecture about the connection between periodontal disease and systemic diseases. He showed graphic evidence that people with gingivitis and periodontitis had a much higher incidence of coronary disease, diabetes and many other diseases. The conclusion he drew was that periodontal disease causes or contributes to the causality of these illness. I learned in high school that this represents false syllogistic reasoning. For example: All doctors are smart. I am smart. therefore, I must be a doctor. This is obviously absurd. Well lets look at this presentation. Where are the double blind placebo controlled prospective studies that demonstrate that periodontal disease is causally related to heart disease or diabetes? Where are these studies which were performed at a large well respected medical center which were peer reviewed, demonstrating statistical significance? And where is the corroberating evidence obtained, by the same methodology at other such prestigious institution? This is the standard for "evidence based medicine." CORRELATION IS NOT CAUSALITY. This is a fatal logical flaw. For years doctors were taught that post-menopausal women who took estrogen had less heart disease. It was based on the observation that women had a 10 year delay in their relative risk of heart disease compared with men, and that this lower risk of heart disease disappeared after menopause. Then, finally, the prospective clinical trials were done. And guess what. The women who took estrogen after menopause had a higher rate of heart disease compared to the control group!
So the lecture I attended was interesting, but if I were a lawyer I would say: he brought everything. except his case. Let me explain. He showed a correlation, not a causality. Perhaps, for example, patients who get periodontal disease have an impairment in their immune system which also can lead to these other diseases. Perhaps people with gum disease have some unknown genetic mutation which can also cause these other diseases. But the best alternative explanation might be: people who have gum disease don't go to the dentist and take care of their teeth. Perhaps this same group ignores all other aspects of their health as well. Perhaps they eat more sugar-hence dental disease: maybe this is the cause of higher rates of diabetes. Perhaps they ignore cholesterol in their diets, exercise less, smoke more , drink more and have a wide range of deleterious health habits. Perhaps this explains why this cohort (population group) has more heart disease. Maybe the orthodontist is correct after all. But he sure hasn't proved his case. None of the many doctors in the large audience questioned his conclusions. In fact, he supplemented his claims with an abundance of medical "literature" and links to web sites which make exactly the same claims, all lacking scientific proof. When it comes to Lyme disease it is a different matter. Even science based evidence is ridiculed by the non believers who know better. There are a lot of claims made about Lyme disease which are clearly false or likely false. Excuse my pontification. Now, I will get to the meat of this post.

Lyme is sexually transmitted: No evidence. Lyme has been found in semen and female genital secretions.Even if it were true that Lyme bacteria had been found in semen and genital secretions it would not prove that Lyme is a sexually transmitted disease. BUT: IT IS NOT TRUE! Lyme bacteria have never been found in these fluids and secretions. Laboratory tests have shown positive PCR tests for Lyme DNA in these secretions. PCR technology used a primer of DNA, the blue print of organisms, which can attach to segments of DNA which are associated with the organism. This does not mean that live, viable intact Lyme spirochetes have ever been found in these fluids. It is well established that killed Lyme organisms are excreted through the urinary tract. In fact this is the basis for a laboratory test for the diagnosis of Lyme. Such protocols have been developed by Burrascano and IgeneX. A patient is loaded with LARGE doses of antibiotics after which PCR technology can demonstrate the presence of Lyme derived DNA in urine samples of tested individuals. If the test is done without antibiotics it is generally negative. No studies have been done which demonstrate live Lyme organisms in these fluids. Then, Lyme is compared to syphilis. Syphilis is transmitted with the help of an open sore in the skin or mucous membranes. Lyme presents no such lesion. In addition, all the evidence about Lyme demonstrates that it is a tissue confined organism. It cannot be found in any body fluids. Urinary contamination can very easily leave trace amounts of DNA in or around genital fluids. In fact, PCR testing involves tremendous amplification. It will find the most minute particles of DNA. The test is frequently criticized because it can be contaminated by a trace particle of DNA "floating around" the lab. Where is the meat!

Lyme is transmitted by mosquito bites and biting flies: Lyme bacteria have been found in these insects. NO EVIDENCE OF TRANSMISSION . Borrelia burdorferi has indeed been found in other insects. Can they transmit it to humans? A lot of work has been done working out the chemistry and immunology regarding the transmission of Lyme by Ixodes ticks to humans. It is a complex process.Mainstream thinking is that 24 hours of tick attachment is required. Even if this is incorrect, attachment must occur for a significant period of time. Mosquito and fly bites are over in seconds. To the best of my knowledge, an ECM rash has never been documented after a mosquito bite. Even if ECM is relatively rare, there should be at least one documented case if this is a significant mode of transmission. Let us discard this popular urban myth.

LLMDS are certified by ILADS: Sorry, there is no certification for LLMDS. They are self taught.

Herbs like samento work well. There is no evidence. Many of my patients have failed such therapies before coming to me for help.

Rife machines: No evidence.

Salt and Vitamin C: No evidence.

Cell wall drugs like Amoxil and Ceftin are dangerous because the convert Lyme to L-forms: L-forms are the dangerous form of Lyme. There is no evidence. In fact, clinical experience would suggest the opposite.

Vitamins, herbs and supplements: alpha lipoic acid, co-enzyme Q10, anti-oxidants, mutivitamins, magnesium, carnitine, omega 3 supplements and many others: No evidence.

Colloidal silver, intravenous vitamin C, intravenous hydrogen peroxide: Not only is there no evidence that these things help, but is ample evidence that they may be harmful.

Pulse therapy versus continuous therapy with antibiotics: No evidence.

Intravenous Zithromax and Flagyl are more effective than oral administration of same meds: No evidence.

This list can go on and on. More later. People: lets try to make sure their is a scientific basis for the claims we make. Let's at least qualify statements: "Bartonella might be a factor here, I am not sure: I have discussed this option with the patient. We are going to try Levaquin, based on anecdotal reports form other physicians that it might be helpful."

Careful. The others want to take us down. Don't give them the ammo!


Rami said...

I am so thankful for your blog.

I am on the quest to find if I indeed have Lyme. Pretty confident I do based on symptoms. Today I received my lab results for the western blot and I reacted to the 41 and 23 bands. Another blood work test came back only showing that I was a tad bit low on my albumin level (34).

My mri - the first was "normal", but received the summary of my second that says I have a white lesion on my right frontal lobe and there is a problem with the c5-c6 region.

So-here's my dilema's/questions....

I have had a headache for 9 weeks, 24/7. Never had a rash. I have black spots in my right eye, stiff neck, numbness in my left hand and light sensitive. Sometime throughout this headache I have developed a pinhead size rash on my torso.

I have done everything possible to find the cause. I know lyme is based on symptoms, not tests, but should I pay for the Igenex testing for co-infections? Also, if indeed I do have lyme, this headache occured post partum, what are the possible risks my unborn son was exposed to?

I am heading 800 miles away to a headache clinic, and I am afraid they will turn their noses to my suggestion to Lyme as all the other doctors I have mentioned it to have as well.

Any help....

PJ said...

Here is an article from a well known hunting photographer on his getting lyme from a black-fly bite.

Lyme report: Montgomery County, MD said...

Stiff neck, headache. Certainly can be from Lyme. The bands are diagnostic. Lyme meningoencephalitis should be treated with IV Rocephin. A lumbar puncture may be helpful, but not required. Co-infection panels for: Ehrlichia, Bartonella and Babesia microti can be obtained from standard labs. IgeneX testing can be added for Babesis duncati. Expensive IgeneX testing is not required. Mostly co-infection are diagnosed clinically. Labs are inaccurate. I have seen other patients who have presented with severe headache as the primary symptom. You need a LLMD to evaluate and treat this. Transplacental transmission of Lyme has been documented but is thought to be rare. Your child is at low risk, but watch for symptoms.

Lyme report: Montgomery County, MD said...

This article is not convincing. The individual involved is a deer photographer and was shooting pictures of deer at the time he developed Lyme disease. The fly bite is probably coincidental. He reports some swelling and redness at the site of the fly bite. This is not unsuall. Maybe he even got Bartonella or possible a Strep or Staph infection. Again, there was no ECM rash documented. This sort of report should not be considered evidence that Lyme is transmitted by fly bites. Credible evidence would require a physician diagnosed ECM rash, prefferably with positive serology or better yet, a positive biopsy/culture showing Borrelia burdorferi organisms. Using reports like this as proof that Lyme is transmitted by flies becomes part of the process of the genesis of urban myths. Per Carl Sagan: "Extraordinary claims require extraordinary evidence."
Maybe flies can transmit Lyme. But there is no legitimate evidence here to promote this hypothesis. When such unsupported theories are put forth by members of the Lyme community it only undermines their credibility.

Rami said...

What symptoms should I watch for with my son? He seems to be normal, on course, however, he sleeps more then I would think he should at 3-1/2 months old.

I did do 2 lumbar punctions and then a blood patch and the punctures come up empty handed and the blood patch did not work.

I did do trigger point injections last wed night and they seem to have helped the head pain, but I hear they don't last long.

My family doc uses Quest for labs, are you aware if they have the coinfection testing available?

Also, my PCP is very willing to work with me if indeed it is lyme, but he has openly said he knows nothing about it or the treatment for it. Would you consider the possibly if the headache clinic doesn't work for me, if my PCP could work with you via phone calls on a treatment plan? I am scheduled to see the headpain clinic tomorrow with hospitalization happening afterwards.

I am desperate. My employer notified me last week, and my "talk" is today that I am losing my job since I have been unable to return to work from my fmla leave. I need my job, if not, we will loose everything.

Thanks again!

NietzscheanLandscape said...

I got lyme Jan 2016. I went on doxy for 21 days.. I relapsed with extreme tiredness exactly 2 months later.. So my experience Lyme shows itself strongly after 2 months.

My sister who i visited Jan 22 Feb 1, and Feb 8. She comes down with sever vertigo March 22..or about 2 months after my initial visit with her. She was doing very badly April 2016

Ok now. She never went in the woods, never had a rash, basically had never even heard of lyme..I tell her I think I infected her around Feb 1. She gets tested via Western Blot, and is positive for lyme. She is doing better with Doxy.

I infected her, I think by using her soap in her bathroom or by sharing a spoon for coffee. And my doctor says there is no evidence of transmission via saliva. I am 90% she got it via saliva from me