New Lyme Dr feels I may be dealing with MCAS but so confused because I don’t have a lot of typical bad allergic-type reactions, itching red skin issues, anaphylaxis, etc. Is it possible for MCAS symptoms to present neurologically instead of the true allergy-type symptoms???
I’m an extreme neuro Lyme/Bart case, nervous system in total over-drive, tremors, seizure-type activity, brain fog, Bart irritability/rage, electrical currents from head to toe, numbness, tingling, super-sensitive to noise, stimulation, extreme fatigue, etc.
Wondering if mast cell issues can be a partial cause of any of these neuro symptoms?? (In addition to the infections being the cause of course)
Posted by unsure445 (Member # 15962) on :
Typically there are some allergic-type symptoms but also many others. Mine began as severe itching and swelling.
Why is your new doctor thinking its mast cell?
It seems to be getting lot's of attention these days which is good but I wonder if some doctors will be a little too quick in making that diagnosis now.
You may want to see an allergist/immunologist who is knowledgable about MCAS and get another opinion. Fortunately, taking antihistamines and changing your diet will tell you a lot.
It takes about 3 weeks to see an improvement after starting antihistamines, just a few days to see improvement from a low histamine diet. Conversely, if you eat histamine foods, such as nuts or some stevia dark chocolate, you might notice an immediate uptick in your symptoms, also useful information.
If I eat a few nuts I have symptoms in a matter of minutes.
I hope you get some answers and improvements very soon! Take good care!
Posted by Robin123 (Member # 9197) on :
Your sx don't sound like MCAS - they sound like Lyme and Bart! And very inflamed nerves! Are you getting treated for the infections?
A PEMF machine can also treat us, if anyone has one - it can quiet down the nerves.
Otherwise, just chipping away at sx named here - have you checked your thyroid levels? If low thyroid, that can be a cause of brain fog. I tested low thyroid, went on Armour thyroid and became present again.
I take turmeric powder to take down inflammation - it's really simple to do, if you can handle it. I get the powder in bulk at the health food store, dip 00-size capsules in it, take one in the am and pm.
For fatigue, have you tried taking magnesium? One mg product I used to take was Super Malic - mg with malic acid. Also, flower pollen worked for me way back when.
Posted by carolync (Member # 50016) on :
unsure445 - I’m not totally sure why she feels it’s mast cell involved. I guess because I told her I can barely handle any treatments or ever stay on anything. This isn’t really due to bad allergic reactions but I think just from being in a body with raging Bart & Lyme... I herx so severely on barely anything and my detoxing totally sucks...
She said she believes the infections turn on mast cell activation syndrome and just make treatment waaay harder for patients. I don’t know. She admitted she’s not an expert but first thing she told me was that it seemed like I’m a classic mast cell case. I have no idea!
I did find a couple articles online that explain how MCAS can present itself in a neurological way with some of these symptoms but obviously my symptoms are so classic for Lyme & Bart too....she believes the top first priority for me is going after the infections because of how bad I am.
Robin123 - Been treating since March of 2017 but oh so slowly because of how extreme my herxing is and b/c I don’t get much relief from detoxing and that can make me much worse. I’m a hot mess.
This new Lyme Dr is supposed to be one of the best in the country so just praying somehow I can make it through her treatments for Lyme & Bart, she’s very experienced and has a high success rate.
Just wish I knew if MCAS plays a role in the severity of what I go through. Trying some experiments with mast cell stabilizers (if I can tolerate them!) to see if that can give just a fraction of relief. Don’t know yet.
Here are the articles I was led to regarding MCAS presenting as neuro/brain symptoms...
I did testing with Genova Diagnostics and 23andme that showed the genetics as to why I'm a bad detoxer. The reason for your herxing and inability to tolerate stuff could be a genetic issue.
Feel free to PM me if you are interested in me looking at the details of what I tested for.
I detox best through sitting in an infrared sauna. Can you handle heat?
Posted by carolync (Member # 50016) on :
Thanks Robin. Already went that route with 23andMe and working with a genetic/Lyme expert to try and get my body to detox better. The testing showed I have genetic issues that make it harder for me. I crashed soooo hard on his treatments, it was awful and I had to stop.
This new Lyme Dr also looks at genetic tests to help guide patients with treatment...just haven’t had a chance to talk with her about this yet, haven’t had my first in-person appointment. That will be in July.
She told me she feels my detoxing is so hard because my infections are so extreme...explained that trying to detox a patient as sick as I am can just make them even worse. That’s me!! She’s also running tests for mold, etc to see if that’s in the way of my detoxing.
Should be interesting. I’ll definitely be picking her brain on all of this including the genetic side of things in July when I see her in-person.
I can barely tolerate anything, heat can be rough on me too...everything is hard, herxes me and brings out more Bart marks and rough symptoms. Hoping one day I can be a lymie who can handle an infrared sauna, I know she suggests them but in my case not sure when she’d feel I should even try.
For now before more treatment begins she’s starting me on an herbal protocol from Beyond Balance for highly sensitive patients who can barely handle anything and are so overly toxic. Supposed to calm the nervous system down, help the immune system and do some gentle detoxing to prepare the body for real treatment. My first goal is to see if I can even handle that! Ugh, hoping one day I can make some steps forward!
Posted by Lymetoo (Member # 743) on :
You could easily have a problem with mast cells. I think it happens in severe cases of Lyme and Company or in long-standing cases.
It does cause a lot of neuro symptoms.
Here is the link I gave you in a PM .. in case anyone else has need of it: