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Wednesday, October 7, 2015

Lyme, POTS, Mast cell activation syndrome: a constellation.

This 23 year old female is like many other, very sick and hard to fix patients. She was in extremely good health until age 17. She was an excellent student and a serious athlete: a happy, well-adjusted young adult on her way to college and other great things. Then the train derailed and broke into pieces. She developed a complex, multisystem disabling disease and had already seen a lot of specialists before coming to see me. When I met her she had been disabled for more than 5 years. Some of her primary complaints included: pain, fatigue and cognitive dysfunction, but there was much more. She had incapacitating, mysterious abdominal pain. She had new onset intractable daily headaches. She had severe, 9/10, diffuse joint pains. She spent most of her time in bed. Sleep was not restful or restorative. She had crushing post exertional exacerbations of all her symptoms. Conversation became difficult. Her focus and working memory were so poor that she was unable to watch TV – let alone read.

Born and raised in Northern Virginia, in a family with highly educated and successful parents, she grew up uninformed about the dangers of tickborne disease. She always had an active outdoor lifestyle. She was active in the Girl Scouts, hiking and riding her bike along trails. On a single day, age 12, after a bike ride she recalls 7 tick bites. She had numerous tick bites on a regular basis for years, seemingly without consequences. Like so many others she was told only to worry if there was a bull’s eye rash and this never appeared.

It is then not surprising that she suffered with chronic Lyme disease and the various attendant coinfections.

A lot bad things happened to her normal physiology. Sometimes it seems that good health is more precarious than we think. A final, unseen straw can break the camel’s back and the dominoes begin to topple.

She suffers with a constellation of Lyme, POTS and mast cell activation disorder. Clinically she suffers with a chronic pain syndrome, chronic fatigue syndrome and intractable-daily migraine syndrome.

I use the term Lyme in a generic sense, encompassing coinfections, typically Babesia and Bartonella.

The POTS was clearly proved with a tilt table test. This explained why she topples over when she tries to get out of bed. It also helped explained her gastrointestinal symptoms, in part, associated with dysfunction of the autonomic nervous system. The POTS piece has been the easiest to address, responding to: salt, Florinef, midodrine and other agents, discussed elsewhere.

Lyme has only responded to heavy bombardment from long term intravenous antibiotics.

Babesia, with increasing resistance had been very difficult to treat. Numerous agents are frequently needed, generally in combination. Malarone + Coartem + Cryptolepis (infuserve) + low dose quinine and even Artesunate (from Canada) in selected patients. This continues to be an issue for this patient.

Bartonella can be tough too. In my experience the best drug by far is Rifampin (always be aware of drug interactions). In most of my Lyme patients I go to a three drug cocktail early on which includes Rifampin.

An overarching, key part of her treatment has been hyperbaric oxygen therapy. A new patient today informed me she was told it never works. I have never seen HBOT fail to help, at least to some extent. The myth that HBOT cannot be used in the presence of Babesia is just that – a myth. If this were the case it would never be used since the majority of patients suffer with the effects of this insidious parasite.

Hyperbaric therapy (HBOT) must be used correctly – which is: low pressure over a very long period of time. Low pressure means pressure less than 2X atmospheric pressure. I use a soft chamber made by Newtowne; with aftermarket valves I am able to treat with a pressure of 1.6 atmospheric pressure (ATA). Otherwise standard FDA approved, home use devices allow only a pressure of 1.3 ATA. The effective therapy for this patient has been 1-2 hours in the chamber daily.

The mast cell piece has added a lot to her recovery. A number of specific agents, discussed elsewhere, and a low histamine diet have been very helpful.

It is important to pay close attention to gut and microbiome. Large doses of probiotics administered several times a day will help. 

Oxidative stress plays into the overall illness in a big way. An advantage of the PICC used for IV antibiotics is that glutathione, the best antioxidant, can be administered intravenously as well and IV is the only effective route of administration.

Mitochondrial dysfunction is a problem. The only treatment I know of is the use of supplements. PPQ may be the most effective of the group.

HBOT helps with so many things: inflammation, immune dysregulation, oxidative stress and improved metabolic function.

More benefits include:  production of natural antimicrobials, biofilm dispersal, improved neuroplasticity and safety. It only works if you keep using it religiously.

The therapy I would love to add is IVIG. To convince a third part to pay we have to prove specific immune and/or specific neurological dysfunction. It works beautifully when available.

I have been treating this patient for 15 months. Where is she now?

Incapacitating abdominal pain is gone; she has headache free days for the first time in 5 years; she is able to think much more clearly, the fog is lifting, she is able to converse, watch TV and read; she is able to get out of bed and walk a few steps, now more – she recently walked an entire block to a friend’s house. Joint pain is still problematic: this can be a very vexing symptom to break.

Post exertional malaise is slowly lifting. She is inching her way towards recovery. She is greatly helped by a positive attitude and a very loving and supportive family.

It started with Lyme: then the dominoes fell. From this patient’s history it is clear that education about the dangers of tick borne disease is criminally unavailable to the general public.  The pattern of disease I see in this patient is one I am seeing frequently: Lyme, POTS, MCAS (mast cell activation syndrome). In many cases I am also seeing hypermobile joints and possible forms of Ehler’s Danlos syndrome. Gut dysfunction likely plays a much bigger role than I have appreciated.


padawan said...

Please share a story of healing.

Lyme report: Montgomery County, MD said...

My patients do very well. I will keep this in mind.

Anonymous said...


Please see my comment at one of your earlier posts on this topic.

I've been working on this puzzle for years, and have found some success in dealing with my own mast cells gone wild.

The pieces I’ve gathered have so far (and I'd appreciate any additional or contrary ones):

1) Food allergies and sensitivities appear to be running rampant. This is inescapable, as we are altering our bodies (antibiotics and poor diet ----> leaky gut) and our diets (same few items all day every day – gluten corn soy egg peanut sugar gluten corn soy egg peanut sugar…..)
We also have a number of common additives, like carrageenan, known and used in the lab to INDUCE mast cell degranulation (such as carrageenan). White sugar, too, reportedly ups allergic response according to the books I have read.

Unbeknownst to nearly everyone, we were getting injected with egg albumen and even PEANUT OIL in our vaccines as excipient or adjuvant.

So we have all that against us, but then:

2) Lyme disease appears to cause new onset food allergy or intensify existing ones.

(I think this is the case with me; I have many other Lyme disease symptoms which arrived simultaneously with the food allergies.)

3) Deficiency: i'm unsure of how, but I've seen hints that the bacteria depletes vitamins B12, C, and D, among others. These are inflammation-fighting/immune-stabilizing. It seems C has multiple functions both to prevent and moderate reactions.
Also, B5 is essential for the ability to break down excess histamine after it's been released. So, less of them means immune havoc.

What has worked for me so far:

1) elimination or near-elimination of the offending foods was necessary. Peanut is a respiratory allergen for me. Dairy, respiratory but also arthritis/athraliga. Gluten is more GI and arthalgia.

2) supplementing B complex, C, and D (via sun exposure) helped calm down my worst allergic reactions.

3) getting mold out of my environment helped a great deal too. At the very least, it reduced the lung “burn.” I am still scheduling an appointment with a lung doc who can check me for mold infection.

4) certain anti-inflammatory foods and herbs. I have to cut this short but will later post a list.

Finally when I added the B complex, it was the last piece in the puzzle that took out these hyperreactions and now I can tolerate all these foods much better.

This leads me to conclude it's nit any one thing, but a collection of things that fulls up your allergy/toxicity. "bucket," until it overflows in the form of allergic r action.

I'm not saying I am inflammation free. Truth is, the times when I have felt fully free of pain and inflammation in the last year have been few and brief. Some of these "perfect" days have been aided by drugs such as prednisolone (given to me after a few ER visits) and Benadryl. I do cheat on my abstinence sometimes, and I pay the price; getting the offender out of your system can take days or weeks. But, the things above will help, and I promise to add a fuller list of anti-inflammatory items soon.

Atwood said...

It is an amazing story. This blog clearly shows how HBOT works and is really helpful for patients. Thanks for sharing helpful information.
Shai Efrati