Article is a summary of a long interview by Scott Forescren with Dr. Tania Dempsey, MD in New York on Bartonellosis and Mast Cell Activation Syndrome.
Bartonelles are the difficult “Lyme” patients
Many patients with chronic complaints have symptoms that are associated with Lyme disease, but whose origin corresponds to a co-infection with Bartonella. Because of this, they are not improved with correct Borrelia therapy.
So I was grateful when I interviewed Scott’s Dr. Tania Dempsey discovered. I got Scott at Dr. Met and met Simon Yu in the course. A “beer-serious”, absolutely hard-working, extremely conscientious person, who takes the most precise notes in the course and has participated 100% in every exercise!
In the interview, there was for me a sudden jump from Bartollenosis to mast cell activation syndrome MCAS, the connection was not exactly clear to me.
I suspect Dr. Tanja Demsey wants to express the following
if patients continue to have symptoms after successful and successful infection therapy against Borrelia and Bartonella (“persistent post-Lyme patients”), this is an immunologically triggered mechanism that is best found in the MCAS.
This is not a real autoimmune disease but rather “in between”: mast cells release a lot of inflammation mediators and thus produce complaints, and depending on where in the body most mast cells are located, there is a confusing and misleading variety of different and apparently unrelated symptoms which are almost always misinterpreted, whose cause is an activation of mast cells.
The greatest difficulty is not only the recognition and correct objective diagnosis, but above all also the right treatment, since the patients react very individually and mostly very differently to a multitude of treatment options: from “miracle healing” to severe deterioration!
When I heard this interview, it became clear to me that these were my most difficult patients – I call them my “salicylic acid intolerants” – in any case:
a misleading variety of violent, sometimes life-disrupting complaints (headache, Brainfag, dizziness, migraines, facial pain, palpitations, shortness of breath, nausea, diarrhea, abdominal pain, cramps, constipation, gas, muscle pain, joint pain, frost, heat, depression, paralysis, Panic attacks, bladder problems – interstitial cystitis etc.) – complaints that are caused by constantly changing triggers, so that the complaints cannot be reduced by avoiding one special trigger etc.
Scott Forsgren even published this
in Townsend Lettters, a US journal for complementary and integrative therapies, Scott and Dr. Patel 2019 wrote an article about MCAS, which indicates that this is probably the remaining symptoms after successfully eradicated Lyme disease, as Scott claims again and again that he started his interview series in response to his own lyme disease.
Dr. Dempsey has always had a penchant for patients with whom no one can really do anything, which appealed to them and challenged them.
The journey to chronic infections began with a conversation with the world-famous Lyme doctor Dr Horowitz, who spoke to her and said: “You are in NY, you have a lot of Lyme patients there?” – and she replied: “Well, some “. Dr Horowitz says: “Well, you have to look even better there”.
Over the next few years I became more and more aware, tells Dr. Dempsey, that most of my patients (90%) have such hidden infections!
So why don’t many patients get better despite good treatment?
this is due to immune dysregulation that persists after infection and leads to a mast cell activation syndrome (MCAS). Thanks to the acquaintance with Dr. Lawrence Afrin – the world expert for MCAS – she finally understood everything.
The majority of Bartonella patients have MCAS.
Bartonellois is a bigger problem than Lyme disease. And the vectors are ubiquitous: gels, flies, ticks, brakes, bees, wasps, dogs, cats – “cat scratch disease”, Bartonellose is everywhere in the world, whether Sahara or Alaska.
- It can also be transmitted to the child during pregnancy.
- These children then have: ADHD, autism, anxiety, neuropsychiatric problems, all of which are associated with congenital Bartonellosis.
- very typical symptom of bartonellosis: late onset of fears, OCD = compulsions, depression, tics, movements, twitches, neuropsychiatric problems. This ranges from mild complaints to psychosis.
- Ankle and sole pain are very typical, small fiber neuropathy, connective tissue diseases: acquired Ehler-Dahnlos.
- Rashes: striae – as long as they persist, there is an active infection. See photos below
- Bartollenosis is actually not a co-infection, so to say just a sidekick, because the real problems are mostly Bartonella, is actually more important than Lyme disease. The same also for Babesia.
Bartonella ALWAYS invades the brain and triggers an immune response there.
Just think of a PANS / PANDA in adults, an autoimmune response as a result of Bartonella infection.
Mast cell activation syndrome (MCAS) – the mast cells surround all nerves (glia), trigger inflammation and “autoimmune reactions”.
laboratory results are only seen in 50% of cases. iGenix does good combination tests: AK and PCR and FISH tests, but only 50% positive. If labwork is positiv to bartonella then Dr. Demsey treats with antibiotics, otherwise more homeopathic or with herbal drops. (Evan Hirsch is very fond of Byron Whites A-Bart —> see Scotts Interview with him)
High antineuronal antibodies as well as high CaM Kinase II (CaMKII, Calcium-dependent Calmodulin Protein Kinase II) in the Cunningham Panel (measurement at PANS / PANDA) makes me think of Bartonella, she says.
the persistence is not removed by using Antibiotics, the Bartonelles remain. You can reduce the load of Bartonella and optimize the immune system so that there is no more suffering.
There is no optimal treatment. Some react to antibiotics, others to RIFE machines or homeopathy, says Dr. Demsey
Antibiotics she uses: Azithro or Clarithro + Rifampizin is our main combination, but John-Hopkins has just published that all Bartonella are immune to it, and disulfiram also seems to help (while Dr. Kinderlehrer thinks that it just does a bit on Bartonella, cannot clear them like it does with Borrelia and Babesia)
Methylene blue and disulfiram and co-trimazole are also effective, they say. No further instruction how to use it.
Mast cells – MCAS mast cell activation syndrome
Mast cells are the body’s first immunological defense, which is why they react with every infection.
In my patients (Dr. Demsey) there is a strong overlap between MCAS and Bartonellose, the patients have 90% of both disorders.
However, you can have MCAS without Bartonellose or vice versa.
17% of the FRG population have MCAS.
There are no really good tests. V.a. since the many mediators that are distributed are not stable.
Histamine + tryptase are quite stable and can be measured. If I don’t have a fixed laboratory diagnosis, I can only use simple therapies.
QEESI Questionair identifies chemistry sensitivity. The so-called MCS (multiple chemical sensitivity) is actually an MCAS she is convinced.
acquired Ehler Dahnlos syndrome EDS
I see hypermobility in many of these mast cell patients. Activated mast cells release enzymes that digest the connective tissue, which changes the connective tissue.
It is not yet clear whether treating MCAS will improve hypermobility, but it looks like it.
Mast cells surround the nerve cells and especially also the vegetative nervous system, which is why MCAS also leads to POTS (dizziness, a drop in blood pressure and palpitations when you get up from sitting or lying down).
To be healed – no idea – but yes, improvement is possible.
she says: I’m not sure if the vagus stimulation soothes the mast cells. But of course the MCAS have an activated sympathetic nervous system that can be reduced with vagal stimulation. We are doing breathing exercises (coherence breathing).
Take out heavy metals
the heavy metals favor MCAS, but pulling them out can stimulate the mast cells even more. I believe that the Herxheim reaction is nothing more than an MCAS. (Dr. Retzek: also my own expierience)
I think you have to treat the mast cells first, only then is it possible to get out or treat the heavy metals, the fungal poisoning, the Bartonella!
It is often the case that – if you reduce mast cell activation – the body can suddenly detoxify itself.
Dr. Chris Shade shows that there is either inflammation NFkB or detoxification NRF2 in the body, never both at the same time. If you actually calm the NFkB and thus reduces inflammation, the body can suddenly do enough detox.
Many patients only get sick after being exposed to mold, even though they have had many problems before already. You have to get out of the mold first. As long as there is still some mold in the house, forget the whole treatment!
CIRS = chronic inflammatory response syndrome – the mold toxin disease – I have suspected for years that this is nothing more than a MCAS.
Treatment strategies for MCAS
if we reduce the causes, such as Bartonella, mold and heavy metals, the MCAS can go away. But there are other patients – that’s the majority of people – have a genetic predisposition that was really triggered by the trigger – they get better but not healthy. They remain sensitive, they probably need lifelong support against MCAS.
there is no such thing as “one treatment option”. It is always individual. Some patients need medication, others homeopathy,
Bromeolain, probiotics, ramnosis, herbs (andrographis) – people often react well to it. Some become practically healthy!
However, the patients are very, very, very sensitive and can react to everything, including food supplements such as cellulose or magnesium sterate as a filler in food supplements.
Some get Allegra – a third generation antihistamine “fexofenadine” – and it’s live changing. I have a child with serious neurological problems that disappeared after 3 doses of Allegra.
I have seen quercetin working on MCAS, but also patients where this has caused the worst deterioration.
We always try to change only one remedy at a time in order not to cause unrest so that we always know where we are.
CBD can sometimes be helpful. If the patient is in chronic pain, it is often beneficial if it contains a bit THC is inside, others cannot tolerate THC at all.
CBD and other means: it is a “tool” but you cannot generalize, you have to try every patient everything again and again!
that also varies. Some patients only need to change their diet and become healthy. I have a patient has recurrent herpes zoster pain, if she eats reduced histamine (avoids tomatoes, chocolate) she is painless. As soon as she eats histamine, the pain is back
Others have no diet changes at all. It is really a difficult clientele!
Genetic / epigenetic cause?
Methylation problems – histamine is broken down via methylation – make a predisposition. But then another blow has to take place and we see that mutations or epigenetic changes in the mast cells are present, this is currently being researched.
Yes, there are certainly a lot more sick people like there used to be, it’s like with the autistic people, we just see a lot more than before – it’s not just a better diagnosis or better perception of these problems as we are sometimes told, the number is increasing
DNRS – dynamic neural retraining system?
DNRS makes the biggest difference from all treatments. You know patients who eat 5 different foods and are then bedridden and a few months later they can tolerate all of this without any problems and can go to foreign countries, it is “mind boggling”. It is complex but it can work wonders!
It is the only one treatment option that we use that has never had any side effects on the patient and has the most potential and benefit.
most important treatments in my office
- Nutrition / diet (can make up 80%)
- Better: ketogenic, even Carnivor – the MACS can benefit a lot from meat only
What will the future bring?
there is a new substance that is being developed in Germany that stabilizes the mast cells. With regard to chronic infections, disulfiram is probably the most interesting
What does Dr. Dempsey for herself
takes many nutritional supplements: probiotics, VitC, quercetin, glutathione, NAC, ALA, try detoxes regularly, do a lot of sport and eat carnivor.