Timeframe for considering trial of Antibiotics

Hi, Emms,

According to the book Toxic by Neil Nathan (I know I bring this up tirelessly...) the MCAS should be under much better control before antibiotic treatment (herbal or pharmaceutical). That might be a good place to start. If the MCAS is better, then your reactions to ingested treatments and to die-off endotoxins will be smoother. For many people, getting MCAS reactions (and mold and chemical exposure) under control enables them to take full doses of antimicrobial treatments and allows them to make real progress. Might be worth checking out that book if you have not already.

It's also possible that you are not detoxing very well. Are you using any binders, moving bowels regularly, drinking enough water, eating well, sleeping well, managing other conditions (POTS, allergies, autoimmune disorders, etc.)? It's hard to tell sometimes if you aren't seeing progress because your treatment is ineffective or if it's because of other things clouding the picture....

With pharmaceutical antibiotics, people usually see the most improvement when they take multiple drugs at once, in particular combinations. If you can't take whole classes of pharmaceutical antibiotics because of allergies or intolerable adverse reactions, then speak with a very good LLMD about whether there are enough kinds you are able to take to comprise a full, effective protocol. (This is the situation I am in - not able to take so many pharmaceuticals that treating Lyme pharmaceutically isn't an option for me.) Others on this forum know much more about pharmaceuticals than I do, so I'm sure you'll get good advice from them.

You could try other herbal protocols - Byron White, Jernigan formulas, Cowden, Buhner, Vital Plan, etc.

Another option is to opt for treatments you don't ingest. That way you still have the die-off reactions from effective antimicrobial treatment, but at least you aren't killing your gut, overloading your system with numerous supplements to process, or setting off MCAS reactions to whatever your mast cells feel like overreacting to that day. (Freaking mast cells, man.) Treatments using frequencies like rife or AmpCoil might be worth a try for the Lyme and co-infections.

For MCAS, you've probably looked into all of these, but perhaps nettles, quercetin, antihistamines, a low-histamine diet, a serious air purifier, switching to nontoxic cleaning and body products, limbic system retraining (DNRS), eliminating exposure to mold and environmental contaminants, taking binders, and avoiding discomfort and stress (lol) could be helpful. For me, a low-histamine diet and DNRS have made a difference in how reactive I am, quelling the MCAS significantly and allowing for more treatment tolerance.

People definitely do get better with herbal protocols, but if you determine that the ones you are comfortable with are not working for you, then there are lots of options aside from just herbs and antibiotics. Good luck with whatever you decide!

I hear you. It's so demoralizing to be trying so hard and have things not work, or worse - set you back. You're doing so many things! Apologies for all of my redundant suggestions. It sounds like you are doing everything right for MCAS (as far as we know what "right" is...) but still reacting to things. Any chance you are being exposed to mold or something else that might be keeping you reactive? Have you seen no improvement at all with that whole MCAS regimen? I think for a lot of people the improvement is pretty fast, provided that you are not exposed to triggers. Did you check that your probiotic strains are the low-histamine kinds? Just trying to come up with ideas....

I had a root canal-treated tooth extracted a couple of months ago and actually noticed a lasting difference that same day. I know someone else who had this experience, too, although I know it isn't guaranteed. You never know. (I started the low-histamine diet, quercetin, and DNRS around this time as well, so my causal determinations aren't entirely clear!)

I guess my main point before was just that you should try something else if you are seeing no improvement, but if you are uncomfortable with antibiotics, then you do have other things to choose from.

When I had the tooth extracted, I felt a little more energy and alertness. My stamina has been a little better ever since, as though my system was busy fighting the low-level infection in the dead root and now has more free time. Have you looked up the dental meridian chart? I didn't feel anything related to that, but some people say they do. The other person I know who felt better after an extraction described it as feeling like someone turned off a white noise machine, like a bunch of background "noise" stopped and she could think more clearly and feel less overstimulated.

Rife technology using sound waves to kill microbes - viruses, bacteria, parasites, etc. - with different frequencies for each one, so you can target specific infections. People tend to herx from rife machines, but there are no side effects unless you are very electrically sensitive. They don't involve ingesting anything, so they are good options for people with gut issues, autoimmune disorders, medication allergies, and MCAS. There are various types like a Spooky-2 and Doug coil.

The AmpCoil is a machine that combines rife-like technology with pulsed electromagnetic frequency therapy (PEMF). There's also a voice-based biofeedback component that can help to direct treatment. You can choose from a menu of settings or customize based on your priorities. Basically it targets microbes and supports proper function of the other organs and systems. Sound waves can penetrate hollow organs, address biofilms, and reach areas that ingested treatments (whether IV or oral) cannot. You know how an opera singer can shatter glass with the right note? This is the same idea. Pretty cool stuff. AmpCoil.com They will connect you with someone for a demo, if you are interested, and there are people from whom you can rent one on a monthly basis if you can't manage the cost of buying one.

I definitely try to be helpful! I think all of us sharing our experiences is a helpful thing.

And by the way I'm so sorry about your sleep. Not being able to sleep feels brutal, and it makes everything so much worse. Wishing you restful, restorative nights very soon!