What to do when too hypersensitive to take treatment?

Welcome to the forum!

The book Toxic by Neil Nathan focuses on people just like you describe. I was like that as well - too hypersensitive for any type of treatment. After reading Toxic, I felt like finally a doctor understood my condition, and it gave me the ideas I needed to get better fast. I strongly suggest you check out the book.

That allergy-like reaction you mention sounds like mast cell activation syndrome (MCAS), which can be associated with these chronic tick-borne infections.

MCAS triggers include: herxing, mold, fragrances, over-stimulation, heat, shivering, high-histamine foods and beverages, high-histamine supplements, stress, allergens, EMF exposure, and exertion. Triggers vary for everyone.

Humans have mast cells all over our bodies, so when they are primed to over-react, we can have symptoms anywhere. Common MCAS symptoms include: digestive system issues (nausea, diarrhea, IBS, GERD), skin issues (rashes, hives, itching, flushing), nervous system issues (anxiety, irritability, sense of doom, neuropathy, headaches, brain fog, pins and needles, twitches, dysautonomia), respiratory system issues (anaphylaxis, wheezing, congestion, sneezing, scratchy throat, cough), and many more.

Severity can range form a minor annoyance (cheeks turn red while drinking wine, which is high-histamine) to life-threatening (anaphylactic reactions). MCAS is not an allergy process, but it can look like one because both involve mast cells being activated. MCAS also should not be confused with mastocytosis, a different but overlapping mast cell disorder. Unfortunately many LLMDs don't know to look for MCAS yet, although awareness is improving.

Treatment can include:
Supplements - quercetin, curcumin bromelain, DAO, CBD or other cannabis preparations, etc.
Prescriptions - ketotifen, cromolyn sodium, etc.
Over-the-counter drugs - H1 blocker antihistamines (Zyrtec, Allegra, Claritin), H2 blocker antihistamines (Zantac, Pepsid)
Dietary changes (a low-histamine diet)
Limbic system retraining - DNRS, Gupta
Stress management (because a hyper-reactive nervous system can lead to hyper-reactive mast cells)
Trigger avoidance when possible

Testing for MCAS is controversial, and can be skipped if the remedies above stop some of your symptoms. I knew I had it when I stopped my daily miso soup and kombucha (both very high-histamine) and found that some of my symptoms (which I had been attributing to infections or herxing) ceased immediately.

Some people find that once MCAS is under control, they can tolerate treatment much better and improve quickly. I was surprised to find that many symptoms I thought were from herxing were actually MCAS reactions to treatment. One way to tell (which is just a guideline) whether a response to treatment is a herx or an MCAS reaction is to think about timing; a herx by definition is endotoxins building up in response to antimicrobial treatment, so it's unlikely to happen right away, whereas an MCAS reaction can take only hours or even minutes to arise.

Feel free to message me directly (my email address is in my profile if you click on my username) and I can send you more information if this sounds like something that applies to you!

Good luck!

I experienced a sensitivity to touch, like the "tender points" people describe with fibromyalgia except all over, and definitely had burning sensations. I had a low tolerance for temperature fluctuations, both hot and cold, and felt ill pretty quickly if forced to be too hot or cold for any length of time. I also had dysautonomia, which affected my circulation, blood pressure, and body temperature needs. Sometimes I couldn't tell if bath water was too hot and needed someone else to test it for me, and other times I would shiver for seemingly no reason. Maybe some of this sounds like what you experience? For me, these were the result of neurological inflammation and hyper-reactivity, and stopped when I treated MCAS.

Members' email addresses are on the right side of the profile box.

I hope you find something that resonates!

Thanks for this, I've been taking source naturals quercetin for many months and take antihistamines as and when needed but although symptoms are so similar to yours they don't seem to ever be resolving.
The products you really kindly described and mentioned give a bit of temporary relief but nothing long term.

Hi Natz,
I'm another one that was extremely sensitive to treatments. For me, it was all about getting my body back to being able to detox effectively, and lower, more gentle treatments. I had to use all herbal treatments due to this, but I healed quickly and well, once I found the right treatment and detoxing herbs/routines that worked best for me.

It seems to me that's what's required no matter what form(s) of treatment a person uses. It's a balancing act between detoxing enough, and not pushing treatment too fast for what your specific needs are. It can get quite complicated, and that's why it's best to work with someone that can help organize, keep track of what does and doesn't work for you, and can help direct/suggest what might be best to do next.

Many can do this themselves, but I've found the more compromised a person's health is, the more they need this kind of help.

As Garzie said, it sometimes take incredibly small doses to start, and for some, they never need to get to "full doses" in order to heal. It's all very highly individual. As I said, I used herbs - as herbal teas, no less, and healed quickly and well. So, finding the appropriate doses for your own body is key as well.

But, we must also make sure our gut is healthy too. Without a healthy gut, we not only can't absorb the nutrients our body needs, but medicines/herbs as well can't be properly absorbed. Also, with leaky gut (many Lyme patients have this) there will be toxins and things that work like allergens that get into our bloodstream. Of course, our bodies are sensitive to this, and can be a road block to healing.

Keep asking questions!!

ref - Low Dose Naltrexone (LDN ) and Lyme / Bart

I have been using it to modulate my immune system as part of my overall treatment for bart and lyme. What i wanted to pass on is that LDN is not a normal medication. ie not something you just take at x dose per day and that's that done. It’s actually a very unusual drug and people with chronic illness can react extremely strongly to it, even at tiny doses. I had to start extremely low dose - 0.5mg and work up in 0.01mg steps per day ( yes 1/100th of a milligram per step) or i would have severe pain all over. however, it definitely helped me with my most limiting symptom - fatigue and i can now do 3x more than i could before.

But i still hear accounts all the time of "my Dr started me at 2mg per day and i felt awful" - or - "i took 1.5mg a day for 6months and it did nothing for me".
Even many LLMDs do not understand this drug or how carefully it has to be tailored to the individual patient’s response. the LDN research trust states that those people who have adverse reactions in the beginning are often the ones who benefit most in the long term - but that those with chronic fatiguing illness - like lyme, CFS, Fibromyalgia and autoimmune disease like Hashimotos may have to go very slowly and ramp up over many months or even years - this has been the case for me.

TUDCA helped me a lot with the sensitivities and numbness.

Thanks very much for this.

So have you found LDN to be helpful as an anti inflammatory? I'm finding the lymes and the Bart are really affecting my memory and was hoping that the LDN could help a bit with this?

So it's really helped reduce fatigue for you? Interesting as when I tried it last time I put on weight and had more fatigue. But I see what you're saying about the ultra low dose. I wish I could remember the dose I took. I'll check my emails and see if there is anything that can remind me.

Many thanks!

@Natz7:

it's a late answer, but i searched on 'labo life' in the forum, and saw your question.
Labo life has very good products: it's a combination of homeopatic and micro immunotherapy products. It works also on the cytokines as you can see in their ingredients for example (these are the ingredients of 2LEID):

Interleukin 1 (IL-1): 5-10CH, Interleukin 2 (IL-2): 5-10CH, Interleukin 5 (IL-5): 6-10CH, Interleukin 6 (IL-6): 6-10CH, Interferon Gamma (IFN-γ): 6-10CH, Transform. Cresc. Fact. Beta (TGF-β): 10-30CH, Tum. Necr. Fact. Alpha (TNF-α): 5-10CH, Acid. Desoxyribonucleic (ADN/DNA): 8-10CH, Acid Ribonucleic. (ARN/RNA): 8-10CH, Acid. Nucleic. Specif. SNA®-HLA I: 10-16CH, Acid. Nucleic. Specif. SNA®-HLA II: 10-16CH, Acid. Nucleic. Specif. SNA®-EID: 10-16CH, Excip. Lactos. Saccharos. Pro Caps. gel. una.

I've used in the past L2EBV (ebstein barr virus), 2LEID (for chronic infections) or 2LEID-N and also 2LARTH.
My husband takes now L2ALERG (for his allergic symptoms & histamin)

My kids has also taken in the past LCMV, L2EBV, LPAPI (papilloma virus)
If i take a labo life cure, i feel strenght and support for my immune system while taken it. For my youngest boy who had EBV since his birth and a lot of health problems, the L2EBV had made such a change at his age of 2 years old! From that point he started developing good and caught up on his developmental delays.

The capsules are numbered from 1 to 10. So the first day i take capsule 1, next day the second capsule till 10.
For the kids the capsules are halved from 1 to 10, and then repeating the other halved capsules again from 1 to 10.

There are three strips per package. Sometimes it is necessary for me to take 1 strip. Sometimes the entire box of three strips is needed...
Both my holistic GP and our homeopathic pediatrician work with it. They are always tested kinesologically on us or the children.

https://www.labolife.com/

They have products for various cancers, for viruses, for degenerative diseases, inflammation. I will look on my other computer because i have a pdf file of all the products with information in dutch and french. I will post it here or in a new post for who is interested. However, I do not know how well known Labo Life is among doctors abroad and whether it is readily available.

Natz7 said...

So it's really helped reduce fatigue for you? Interesting as when I tried it last time I put on weight and had more fatigue. But I see what you're saying about the ultra low dose. I wish I could remember the dose I took. I'll check my emails and see if there is anything that can remind me.
!

yes - the amount of physical and mental tasks i was able to do in a day improved during the ramp up phase of LDN - this was gradual as i had to ramp up very slowly over around 9 months - as otherwise i would get things like fatigue and pain all over and disturbed sleep - all common during ramp up phase - and why the drug neds to be treated differently to pretty much any other drug - and bot the starting dose and speed of ramp up has to be adjusted for each individual carefully based on their response

lyme treatment is a marathon - not a sprint - typically chronic lyme patients have to try many things and learn from each trial in order to find what works for us and move ourselves forward.
if you are attempting to treat yourself - rather than use a recognised LLMD who can draw on their experience in treating 1000's of other patients before you - then we really need all the help we can get in this learning and adapting process
if self treating i strongly believe careful record keeping is an essential part of this learning process - so i would encourage you to keep some form of system for recording all trials/ interventions - including doses and symptoms along the way - so you can refer back and understand what changed - and what caused what
miracle cures are exceedingly rare - instead improvements may be very subtle - but vital to identify to find what helps.
i spend 20minutes each day recording this information and reflecting back on trends - and have been amazed how often it has helped me identify what was helping - or what was making things worse - that was not at all apparent without such a record. as a result it both dramatically increases ones chances of success - and enhances ones sense of control along the way (a sense of control is tremendously valuable in such a challenging disease that often otherwise cause people to descend into hopelessness).

there have been some discussions here on how to go about this.
i prefer to use an excel chart - as this allows the use of charts - that make it easy to spot trends visually. i have shared a basic template for this - if its of interest
others may keep a simple calendar - or some other paper based system

i hope its of some help