More about HBOT

 We have had a lot of success with our hyperbaric oxygen therapy (HBOT). Positive clinical responses have been varied.

The latest research regarding the use of low pressure hyperbaric oxygen therapy for the treatment is presented in a peer reviewed study published in PLOS one. Patients suffering with mild brain injury were shown to have significant improvements by cognitive metrics, quality of life assessment and SPECT scanning. The patients were treated with a typical regiment available for our patients: one hour at a pressure of 1.5 ATA. These patients were treated for 2 months, total of 40 treatments and were shown to have persisting benefits.

There of course is no research regarding the use of hyperbaric oxygen therapy for patients suffering with Lyme disease, but I think this study can be used as a good surrogate.

There is some evidence that low pressure may be more effective than higher pressure with less risk of toxicity. The pressure of 2.4 ATA may be associated with toxicity in the brain.

There is evidence that pressures of 1.3 ATA with room air are effective. This therapy has mistakenly been used as the placebo control group (in another study)  but in fact rather than acting as a placebo was found to be beneficial.

Many of our sickest patients have cellular dysfunction with glutathione inadequacy.  This can be measured with a blood level. MTHFR mutations with decreased methylation and elimination of toxins may be an issue. HBOT is another way of increasing glutathione and promoting cellular detoxification. Other benefits include: increased tissue oxygenation, decreased inflammation, beneficial effects on cytokines and lymphocyte functioning (enhancing the immune system) and improving neuroplasticity.  HBOT works well with antibiotics and may increase antibiotic penetration into tissues. The therapy may obviate the need for intravenous antibiotics.

Lies about the Western Blot

Patients have endless curiosity about Lyme tests, especially confusing Western Blots. It is no surprise since mainstream medicine keeps pushing the same lies.

Lie #1:  The only test you have to order is "Lyme serology." This is the ELISA or EIA followed by a reflex Western Blot. (The second step, Western Blot, is only performed when the ELISA is positive). The technology has improved a lot. The ELISA is highly sensitive and the Western Blot very specific. Other laboratories (always referring to IgeneX)  have invalid tests which are not FDA approved and are not peer reviewed. Do not use the laboratories. (And make sure your patients stay off the Internet).

Truth:  Despite the claim, the technology has not improved and does not continue to improve. The technology is the same. The FDA regulates drugs and medical devices, not laboratory testing. Biomedical companies may develop off the shelf  test kits and market these diagnostic test kits to clinical laboratories. These diagnostic test kits are considered a "medical device" and thus come under the purview of the FDA.  In general, test kits sold for the mass market are designed to be easy to perform or idiot proof to the extent possible. Commercial laboratories like Labcorp and Quest purchase such ready-made kits for testing patient samples for Lyme disease. These commercial test kits are vetted by the FDA and considered "accurate:"  They do not change year-to-year. These tests are not upgraded anymore than a tablet of aspirin is. Lyme ELISA and Western Blot from Labcorp/Quest done in 2005 and 2013 are the same. Despite claims to the contrary, the test is not better, the ELISA is not more sensitive or the Western Blot more specific.

These tests are not peer-reviewed. I do not know what this means. The tests are approved by the FDA. Which peers are we talking about?

Specialty laboratories like IgeneX and Stony Brook do better Lyme tests. They make better, more complex and accurate test kits for use only in their laboratory facility. They do not manufacture testing kits for resale to other laboratories. Because of this the FDA has no involvement whatsoever in these laboratory activities. This is not something the FDA does. Laboratory specific testing methods are not a medical device. Why is this so complicated?  OK -- so you might wonder, how do we know these facilities do a good job. Clinical laboratories are licensed by and regulated by states agencies who perform routine proficiency tests to make sure the labs do a good job. New York state goes a step further. Not trusting other state laboratory licensing boards, it does its own proficiency testing in addition to those performed by the state of origin of the laboratory. So when New York  licensing authorities allow IgeneX to operate within its jurisdiction, you can be assured that the lab has passed the mustard. Despite this, physicians of authority in New York and elsewhere continue to disparage IgeneX calling it such things as a "quack lab." They say IgeneX for example is not validated, peer reviewed or FDA approved. These claims are misleading obfuscations, prevarications or lies, plain and simple. Why do they want us to use less accurate testing methods??

Lie #2: Although the standard Lyme tests are not accurate in early Lyme disease and may miss 40% of cases, the test is virtually 100% accurate when performed later in the course of the disease (generally after 6 weeks). In virtually all cases patients convert from IgM bands to IgG bands. When this does not occur the original positive 2-tier ELISA/IgM Western Blot positive test was in fact a false positive. False positives are common. Many other common ailments like mono and rheumatoid arthritis can cause false positive Lyme tests. Many patients diagnosed with Lyme disease showing only positive IgM Western Blots never had Lyme in the first place. The conversion to the 5/10 IgG bands is dependable.

Truth: I do not know what planet they are on. None of the above is true. The CDC designated the 2-tier test for surveillance was designed to be exceedingly accurate: about 100% accurate. I am sorry to report that Lyme did not read the rule book about IgM and IgG antibodies.  Very few patients ever develop a significant IgG response. The infamous magic number, 5/10 seems to have been made from whole cloth.  The formula was agreed upon in a weekend meeting in Dearborn Michigan of CDC scientist and national laboratories directors.( 19 years ago in 1994 and never re-visited). The point of the exercise was to find a formula that would put various laboratories and researchers on the same page. This test was designated for surveillance purposes. A positive means you were definitely infected with Lyme disease.  It was called a national surveillance test and retains that name to this day. The famous CDC test was never developed for purpose of making a clinical diagnosis of Lyme disease.  Why is that complicated? Just to show the insanity of it all --  the same researcher, Dressler, who came up with the famous 5/10 also presented a 2/8 IgM band standard. This scheme was kicked out because his laboratory used the N40 strain instead of the B31 strain of Lyme.  The assembled experts decided to use a formula of 2/4, changed to 2/3 for positive IgM criteria. Again, it was a tool designed to follow the number of cases of Lyme disease over time in different geographical locations. It would not have mattered it the 2/8 formula had been adopted instead of the 2/3 formula. By the way, the 4th band, #37, was dropped for technical reasons. These agreements were reached so that researches everywhere could read from the same sheet of music.

As for false positives , these appear to be exceedingly rare. As far as I can tell a positive 2-tier CDC test again is virtually 100% accurate. Of course most patients suffering with Lyme disease do not have this result.

Please visit our new facebook page, facebook.com/Drjaller

Babesia cerebritis

Psychiatric problems which accompany neuroborreliosis have largely been attributed to Borrelia and Bartonella like organisms within the central nervous system. This synergy has been linked to an array of psychiatric syndromes and symptoms. Many of these patients have irritability, mood swings, depression, mania, personality changes and even episodes of rage. "Lyme rage" seems to be closely linked to the affiliation of these two brain invading pathogens.

But I think the problem of cerebral babesiosis may present even greater challenges. I am thinking about a patient I have just started treating as well as several others in my practice. Some patients have incredibly severe psychiatric Herxheimer reactions whenever treatment for Babesia is instituted. Even minute amounts of antimalarial therapies are not tolerated. Several of my patients share certain characteristics. Their moods are particularly labile. They frequently cry at the drop of a hat or for no reason at all. They experience racing thoughts associated with severe anxiety which are frightening and difficult to control. They also may quickly develop suicidal thoughts. These reactions are intense and come on very quickly. And they leave just as quickly when anti-malarial therapy is withdrawn. These reactions may occur with even drops of Mepron or artemesinin. In treatment we (the patient and me) find ourselves repeatedly treating and backing off and never getting to therapeutic levels whichever drug we are attempting to use.

A current patient comes to mind. He has suffered with Lyme for more than 15 years.  His chief complaint relates to a muscle problem. When I looked at his blood smear I saw great examples of Babesia. And to firm up the diagnosis the WA1 titer was positive at 1:512. It was only after I gave him these results that he told me various doctors had been trying to treat Babesia for years but he could never get through therapy because it always made him crazy.

One of my observations is that it is easier to treat these patients when they are on IV Rocephin. I presume this is due to a neuroprotective effect.

Other strategies are needed for the treatment of these vexing patients.

Lyme colitis

I am hoping that case reports of this kind will be written up in the future for publication in medical literature.

I first met this 48 year old female in the spring of 2012. For several years she had a variety of mysterious symptoms but the one of interest here relates to problems with her gastrointestinal system. Because of chronic abdominal and pelvic pain a gynecologist had preformed a laparoscopy looking for pathology and this was normal. She noted changes in her bowel movements complaining of some loose and frothy appearing stools without the presence of blood. A gastroenterologist performed an upper endoscopy, a pill-camera exam of her small bowel and a colonoscopy. All of these tests were normal. Her gastroenterologist was stumped.

She did not recall a prior history of tick bites. She lives in an urban area. Historically, she could not recall significant risk factors for tick exposure except sitting on a blanket at a picnic on one occasion.

Her general practitioner --  paying attention to other symptoms, including fatigue, neurological symptoms and cognitive symptoms ordered a Lyme test:  the two tier standard surveillance test was positive by CDC standards.

Her physical examination was unremarkable except for mild diffuse abdominal tenderness.

Standard laboratory testing, including tick-borne co-infection testing was negative.

I ordered a test which was performed by Clongen Labs which was highly instructive.
At my request, a specimen obtained via colonoscopy from a normal appearing section of colon mucosa was submitted for PCR analysis. The results were positive for Borrelia burdorferi sensu stricto.

She has a complex, multi-system case of Lyme disease and associated co-infections, the details of which will not be discussed.  The gastrointestinal symptoms completely cleared within about 3 months. Other symptoms have been more stubborn but are now much better after 6 months.

I have found similar finding in many other patients. I do not think PCR positive Lyme case reports exist in medical literature.

In some cases there are abnormal findings with colonoscopy usually diagnosed as microscopic colitis and/or collagenous colitis.

Comment:  Most gut flora withstand are intense bombardment with antibiotics because of protective biofilms.  In the case of Lyme colitis is seems likely the spirochete becomes incorporated within some of these poly-microbial biofilms. In nature, most biofilms contain a variety of microorganisms which may include bacteria, fungi and protozoans. Despite innate protection of "good flora," pathogenic bacteria like: shigella, camplobacter, toxigenic E. coli, and C. difficile respond to appropriate antibiotic therapy.

I believe Lyme colitis is a common and generally unrecognized part of multi- system Lyme disease and that further research into this area my provide further evidence of a protected niche which supports persistence of the organism in human hosts.

Lyme disease, Alzheimer's disease, Glutathione

Nothing short of amazing. This 62 year old female walked into my office beaming. She drove more than an hour to my office, something she had been incapable of doing for many years.

This patient had been dealing with 2 sick family members over the past years and had neglected herself. Over the last 2 years her family had become progressively concerned. She was loosing the ability to function. She could hear something repeated ten times over only to forget it moments later. She was experiencing a rapid, global decline in cognitive functioning and the ability to manage activities of daily living.

She had a long history of Lyme disease but had been non-compliant with therapy. She complained that every medicine gave her side effects: a moot point since she never remembered to take them.

We skipped the SPECT scan and went right to a PET scan.  These are both nuclear medicine scans which make observations regarding brain function. A SPECT images blood flow: areas of the brain which are not functioning have decreased/abnormal blood flow and therefore oxygen utilization patterns.  The PET images tagged glucose and actually images areas of the brain that are specifically not metabolizing sugar, not working/nonfunctional.  The PET is approved for an adjunct in making the diagnosis of Alzheimer's disease.

Her PET showed classic signs of Alzheimer's disease.  With these results the patient was now worried and agreed to attempt to treat Lyme disease in earnest.  And as one of her astute neurologist astutely: Alzheimer's doesn't get better. She has.

On my recent exam I could find nothing significantly wrong with her memory. Doctors frequently assess mental capacity with a mini-mental examination. She did great. She could count backwards from 100 by serial 7s; she could recall three items after 5 and 10 minutes and she could spell WORLD backwards. Her affect showed clarity I have seen in 5 years.

So what happened?  IV antibiotic therapy. I started treating her with Rocephin. Chronic pain melted away which was a great relief but her mental status was not quick to change. I then added Flagyl, a drug which fights the strange pleomorphic (cyst-like) forms of Borrelia in the brain.  After 3 months her brain was not significantly better.  Now after 4 1/2 months there is a real change. My patient did something else as well,  with my approval under my radar. We ordered IV glutathione which she has been receiving every other day for the last month. I don't know yet, but this could be a game changer.

Glutathione is the master antioxidant on a cellular level and it is critical for detoxification on a cellular level. Chronically ill patients are generally deficient. Many patients have reported that intermittent doses of IV glutathione in their doctor's office have been very helpful. Having a PICC provided convenient access.

I am hearing a lot about methylation. The induction of methylation pathways promotes glutathione and this can be achieved with a number of supplements, primarily various forms of B12 and folate.  Active forms of B12 including methylcobalamine and hydroxycobalamine are taken under the tongue with special forms of folic acid such as Folinic acid. The recommended protocols are a bit more complex.

It makes me wonder if this might be why patients frequently have a lot of energy after receiving B12 shots. Maybe not a placebo effect after all.

The simultaneous use of hyperbaric oxygen therapy also augments the effectiveness of antibiotics for brain recovery.  Hyperbaric by itself, results published (for what its worth), at low pressures, about 1.5 ATA is associated with significant cognitive improvements.

As I ramble on.... the snarky (for what its worth) comment has to do with how doctors like me look at medical studies with our distrust of "evidence based medicine."  Perhaps it is a little hypocritical for us to throw out the studies that deny chronic Lyme but keep studies that prove things we believe in/agree with. Well lets not go overboard and throw out the baby with the bath water. Some studies are useful. Anyway, the "denialist" studies never proved their point: they were poorly designed with built in biases and them misinterpreted.  In my blogs there is a recurring theme:  medicine is a healing art, not a science. But studies and science have a great deal of value. The help us understand mechanisms and at times point us in a direction.

Immune hyperstimulation, Lyme disease, lymphoma, hyperbaric oxygen therapy (this post has an identity crisis)

My patient today is a 60 year old female who has suffered with severe Lyme disease for more than 3 years. At one point she was mistakenly diagnosed with tertiary syphilis.  Most recently symptoms have included: burning sensations, numbness, twitching, palpitations, flulike symptoms, difficulty walking with leg weakness, double vision, forgetfulness, brain fog, joint pains and mood swings. At this time she is very troubled by symptoms of head and ear fullness.

I will tell you a little bit more about my patient.  She suffers with chronic hepatitis C contracted from a blood transfusion in 1989. Several years ago she was diagnosed with Waldenstrom's macroglobulinemia -- before the Lyme diagnosis. This was treated with chemotherapy and plasmapheresis and she has done quite well.  Waldenstrom's is a type of B-cell type non-Hodgkins lymphoma.

A paper published in 2008, Archives of Internal Medicine, Koshiol et al, reviewed the relationship between WM (Waldenstrom's) and chronic immune stimulation.  Persons with autoimmune diseases had a 2-3 fold increased risk of developing the disease. In addition, certain infectious diseases were also linked to an increase risk of the disease. Prominently the authors mention Hepatitis C and rickettsiosis.  Autoimmune diseases listed include rheumatoid arthritis, Sjogren's syndrome, and MS.

WM is a rare type of lymphoma. Although incurable, it can have a rather indolent course. Suffering with Hep C, lymphoma and Lyme, my patient is most troubled by Lyme.

One might wonder if chronic Lyme disease might itself be a risk factor for the cancer.

Hyperbaric oxygen therapy has been somewhat helpful but she still experiences a fullness in her ear and head which are very bothersome symptoms. She has only been treated for one month and we are hopeful that additional treatments will provide additional relief of symptoms.  She has only had 20 sessions.  My patients have done better with 40-60 sessions.

There is a high pressure vs low pressure HBOT controversy. Many believe that HBOT for Lyme is only effective with the higher pressures typically available with hospital grade chambers. Pressures of 2.4 ATA are generally recommended. This equates with a diving depth of 49 feet underwater. Others have suggested that lower pressures, typically 1.5 ATA, equal to about 17 feet under water may be adequate or better.

Soft portable chambers on the market generally employ a pressure of 1.3 ATA, about 10 feet under water. This is the FDA approved pressure for such devices. Many patients report excellent results with these devices and pressures.

My Hyperbaric device is a bit of a hybrid. Some portable devices are built to handle higher pressures although they are not licensed by the FDA for pressures above 1.3. My portable, extra-strong chamber has 3 settings: 1.3, 1.5 and 1.6. The highest pressure, 1.6 is the equivalent of diving 20 feet down. I have found that all three pressures are effective but the higher 1.6 pressure seems to be the most effective. As an example, it worked well for this patient.