Hyperbaric update

Lots of questions about my experience treating my patients with low pressure hyperbaric oxygen therapy.

I have only been using this treatment for a few weeks. I have started all of my patients at a pressure of 1.3 ATA, breathing 100% oxygen. All patients have experienced Herxheimer reactions, of varying degrees.  I am not yet seeing much clinical change in my sickest patients (who have completed two weeks). This is not surprising; but I hope to hear good things after a month or more.  I am hearing good things from moderately ill patients already, and this is very exciting.  Of course I cannot rule out the placebo effect. Some patients have reported significant improvements after only 4-10 treatments. Improvements include: rapid wound healing (not a surprise), less joint pain, more energy, less brain fog, less headaches and a greater overall sense of well-being. Changes in function ability have also been reported. One patient reports a tremendous increase in energy and endurance.

A couple of patients have had rather severe Herxheimer reactions characterized by severe fatigue. In these cases I have lowered the frequency of therapy.

My sense so far is that HBOT is like many other treatments: results are variable and treatment programs need to be adjusted.

I suspect that therapy is going to be prolonged for most patients.  I think a 3 day per week schedule will help but may take longer. Perhaps more time in the chamber will help.

A lot of benefits have been described for low pressure HBOT.  Currently I am using 1.3 atmospheric pressure which equates with swimming about 11 feet underwater.  I have supplemental valves which will allow me to raise the pressure to 1.5 ATA, equal to  swimming 18 feet underwater. I will try different pressures with patients to see what works best. 1.5 ATA is the upper limit of what is generally considered low pressure.

There is an argument that low pressure is better than high. A primary mode of action of HBOT is the generation of reactive oxygen species. These compounds are oxidants, not anti-oxidants. At lower levels they reduce inflammation, kill bacteria and promote improved functioning of the immune system. It is possible that excessive amounts of these compounds may have a toxic effect. (I do not know if this is true; I have only read about it).

Does low pressure HBOT work? I think so. Maybe I said this before. All elite athletes own and use HBOT units, finding better recovery from work outs with a lot less muscle pain.  I hear some athletes even sleep in them; but the consensus is that this is likely not a good idea. Home chambers do not exceed 1.3 pressures based on current FDA allowances (which is being challenged).

Ceftin in the summer and Mycoplasma

Doxycycline is the standard first line drug for Lyme disease. During the summer because of reactions to sunlight we frequently prescribe either amoxicillin or Ceftin. These drugs as mono-therapy are inherently problematic. They have no activity against a number of co-infections, such as Anaplasma, Ehrlichia, Bartonella and Babesia. Doxycycline may have a modest effect against both Bartonella and Babesia, particularly early on.

There is another germ which I have underplayed and may be highly significant. Mycoplasma. Most Mycoplasma species are not tick borne but M. fermentans can be tick borne.  Other common species of Mycoplasma include: M. pneumonia, M. penetrans, M. hominis.

Mycoplasma bacteria are the smallest living organisms known: most don't consider viruses living. These tiny microbes are cell wall deficient and can survive only within cell

Most doctors are only familiar with M. pneumonia which is associated with "walking pneumonia." Another variant is associated with an STD.

I am looking at a review article by Endresen.  Evidence is presented that Mycoplasma is highly associated with chronic fatigue syndrome, fibromyalgia and Gulf War Syndrome.

There is a trend in medical literature to claim that fibromyalgia and chronic fatigue syndrome are one and the same disease.

Other papers has shown a clear relationship of Mycoplasma with inflammatory arthritis, including rheumatoid arthritis.(not mentioned here).

He  reports that patients with more than one species of Mycoplasma detected have disease of greater severity.

It is interesting:  he discusses Mycoplasma as a potential coinfection in patients with CFS/FMS and mentions: Chlamydia, brucella? enteric bacteria like Proteus? and various viruses.

I think Brucellosis has been causing a chronic "Lyme-like" disease for decades before Lyme came on the scene. This is certainly not a mainstream view. 

Why couldn't he mention the "L word."  Is it that much of a third rail for academic researchers?

He even talks about treatment. He discusses the use of Minocin, Cipro, Biaxin, Zithromax but downplays the role of doxycycline.

It seems this has something to do with a clinical trial sponsored by the US defense department study of veterans with  Gulf War Syndrome treated with doxycycline for one year.

We know that Garth Nicolson has strong views on the topic.

The author believes that short courses of antibiotics are frequently associated with relapse and that one year of treatment may be required for recovery.

Once again, long-term antibiotic therapy may be acceptable as long as it is not for Lyme.

Mycoplasma should be considered a potentially significant player and I suspect that doxycycline works as well as minocycline and that antibiotics need to be used in combination for effective therapy.

Another Lyme: B. miyamoto

From the CDC, New England Journal of Medicine and Columbia University (Brian Fallon) --

Deer ticks, Ixodes scapularis carry another Lyme like bacteria. It appears to be a nasty spirochete in the Lyme family.  No test is currently  available:  Borrelia miyamoto.  We have known about this germ since  2001. It caught the attention of health authorities: a study published in the New England Journal of Medicine reported 21% of 14 patients evaluated in a Lyme clinic in Southern New York, with only flu-like symptoms, tested positive. (We do not have the test yet).  Some patients sero-converted.  The opposite of STARI, which gives a bulls eye rash, this spirochete does not cause EM (Lyme rash) but presents with  flu-like symptoms.

It may cause cases of a sero-negative illness which may resemble chronic Lyme disease according to Dr. Brian Fallon as reported on CBC July 2, 2013. 

A test is only available to researchers and the CDC.

Yes, as many have said all along, the diagnosis of Lyme disease is based primarily on clinical grounds, not laboratory data. What else don't we know?

Lyme and killer headahce

 

My 52 year patient felt she was a failure in life when she saw me 5 years ago.  Before that (in her previous life) she was living the "American Dream."  Gregarious, vivacious and outgoing  -  she was the life of the party. Barbecues on the deck were a regular occurrence. To escape the stress of daily life and raising three kids she was passionate about her hobby, gardening.  She was frequently seen pruning and trimming her exquisite landscaping, the envy of all, late into the night. Then at age 44 she developed headaches, diagnosed as migraines. It seemed odd that migraines would suddenly appear in midlife --  and there was no family history of migraine. The headaches became more frequent and unbearable. They robbed her of all quality of life. She went to numerous doctors ultimately ending up in pain management taking narcotics which barely took the edge of her progressing misery.

The parties stopped, as did the gardening. She could not work or help the kids with their homework. She had other symptoms too. She had drenching night sweats and trouble moving. It was an effort to move her legs to get out of bed in the morning. Her body hurt: her hands started swelling. She wasn't just tired. Words don't describe the crushing weariness she experienced. She just wasn't thinking as clearly as she used to. Her once sharp memory was now dull, and getting duller. She became depressed. Antidepressants offered little relief: at times she contemplated ending her life.

What the hell was wrong with her she thought. A neighbor still gardened avidly and went to the PTA meetings. She had simply fallen to pieces. She thought she was weak, a failure and somehow it was her fault. Doctors pretty much told her as much.

When she finally shared with me what had been going on I asked her if she knew anything about Lyme disease. She did not.

Let my digress for a moment.  Now that I "specialize" in Lyme I can no longer help others like her  --  falling thorough the cracks or perhaps off the cliffs;  caught in a medical system which is blind and deaf.

Ultimately I convinced her to proceed with my recommended treatment for Lyme disease.  It helped. But she never took the medications long enough because of side effects. Despite suboptimal therapy, sweats got better as did the brain fog. Fatigue and depression were a little better.

Headaches --  not so much.

Over the last year, at my behest,  she has been receiving Botox injections every 3 months. She is better but the headaches are still killers. This means there are fewer trips to the ER and less days in bed.

I talked her into trying hyperbaric. She went in despite claustrophobia. Only one day later, she felt miserable with a Herheimer, lasting 3 days. One week later she reported  her headaches are better and she is very excited about continuing hyperbaric oxygen therapy believing this may be the final bullet in the war against her migraines.

I am also hopeful that the combination of hyperbaric oxygen and low dose antibiotic therapy, which she is able to tolerate, will get treatment for her Lyme disease back on track as well.

Is STARI Lyme?

I will got on a limb; I think a short branch.  Lone star ticks transmit Lyme disease. My patients have pointed this out to me for quite some time.

 We have to ask the question, what is Lyme disease?

The answer is a little complicated.

Willie Burgdorer discovered the famous spirochete granting him "medical immortality." The spirochete we associate with Lyme is Borrelia burgdorferi. Over the past few decades the Lyme epidemic has spread throughout the US and become global.

But not all Lyme is the same.

Our standard Lyme germ is designated strictly Lyme:  B. burgdorferi (sensu strictu). Other forms of the bacteria causing Lyme disease(or something like it) are still called Borrelia burdoreri even if when they are a different species of Borellia. We do this by adding the suffice "sensu lato," meaning it is Lyme in a looser way. So bacteria with names like: B. garinii, B. afzelli, B. japonicum are called Borrelia burgdorferi (in the looser sense).

Normally a bacteria is only allowed to have one species name.  Scientists are particular about the way the group living organisms in a particular taxonomy.  KINGDOM, PHYLUM, CLASS, ORDER, FAMILY, GENUS, SPECIES.  Strains are variations within the same species.

With Lyme disease, we have made an exception and attach an extra species name in honor of our friend Willie Burdorfer.

Mainstream medicine informs that  STARI or Master's disease, caused by the lone star tick is no cause for alarm because it is not Lyme disease.

The particular bacterial cause of STARI has at times been elusive. But, some species of Borellia have been identified in STARI cases.  The first was B. lonestari , currently not considered one of the Lyme sensu lata species. More recently two Lyme "sensu lato" species have been connected to STARI:  B. adnersoni and B. americanum.  So STARI can be Lyme even by the CDC definition.

I think they need to update their website.

The rash seen with STARI is more dramatic than that seen with standard Lyme is more like to cause the classic "bull's eye" appearance. In other words: STARI is more Lyme than Lyme --  at least with regards to the rash.

Maybe STARI explains some sero-negative Lyme disease.

STARI is said to be milder than Lyme. Are we sure?

Anyway, it seems to me that B. lonestari should be part of the Lyme sensu lato family.

But we are cautioned to avoid bites from the lone star ticks because this may lead to meat allergy. True.

As Ixodes scapularis (deer tick) invades from the north and Amblyomma americanuum invades from the south, they both converge here, in the mid-Atlantic. 

It can be hard to tell the ticks apart.  Adult female lone stars have a distinctive white spot on their backs.  Nymphs cause most disease and are hard to tell apart.

Another marker or co-infection

Lots of patients are testing positive for Rocky Mountain Spotted Fever. Patients universally have low positive titers.  I do not think most have ever had the disease.  There are many tick borne diseases yet unknown or undiscovered. A Rickettsia bacteria, unclassified, has been reported in a European species of Ixodes ricinus.  This is a novel find.

Rocky Mountain Spotted Fever (RMSF) is caused R. rickettsia.  Patients have spots on their hands which spread to their trunk and these patients are frequently critically ill.  Rickettsia species cause other diseases including typhus. RMSF is not known to be transmitted by small tick, deer ticks or lone start ticks, but transmitted by larger ticks like wood ticks/dog ticks.

I think these positive results are due to cross-reactivity with some yet unknown form of Rickettsia carried by deer ticks.  Some species of Rickettsia may cause little or no clinical illness.  Low positive serology for RMSF may be another marker for the presence of tick borne illness in general.

Like other tick-borne co-infections ( like Anaplasma) , Rickettsia species are all sensitive to doxycycline. 

For this reason, a course of doxycycline should always be incorporated in an antibiotic program used in the treatment of Lyme disease and tick borne illnesses.

Updates: antibiotics

The FDA has issued an alert:  Zithromax is associated with an increased risk of cardiac arrhythmia.  Because of this I have shifted away from this therapy.  I have found that IV Clindamycin, despite early concerns that it causes C. difficile colitis, is a highly effective drug and that it use had been effective for some patients with neuroborreliosis particularly in combination with Flagyl. Recently, several patients have had significant cognitive clearing with use of the combination. Clindamycin is highly active against Borrelia burgdorferi and has good penetration through the blood brain barrier.

Oral Zithromax as long been a cornerstone of anti-babesiosis therapy. Other macrolides, in particular Biaxin may be substituted with a good response. Alternatively, clindamycin or Bactrim may also be used.  These drugs have been used to  prevent resistance of Babesia to Mepron but also have mild anti-parasitic effects independently.

Bartonella:   Levaquin/Cipro  --  largely promoted for the treatment of bartonellosis may not be a good idea.  The fluoroquinolones are associated with tendon /muscle/joint pain with the risk of tendon rupture.  In a recent patient, the agents caused knee swelling and pain, not tendon pain which resolved with cessation of therapy. More importantly however:   Bartonella species may develop resistance to these antibiotics fairly quickly.  Overall, rifampin is a better choice.  A big caveat here as well : rifampin should never be used as monotherapy.  Bacteria develop quick resistance to rifampin when it is used as a sole agent . Traditionally, rifampin has been combined with Zithromax.  Alternatives to Zithromax include doxycycline and others.  I have consistently found  minocycline to be anti-Bartonella, while doxycycline lacks this property.  Biaxin/Zithromax do in fact have some (weak) anti-Bartonella properties although Bactrim remains a better drug for Bartonella.