Since September I've been having a hard time understanding my reactions. I've been on different things trying to detox or boost my immune system with different practitioners, but they never truly addressed the core issue which is Lyme (and possible co-infections) that is very much chronic and active.
I would react to the supplements I would take, my tolerance for supplements became even lower than it used to be, I would react to food that would normally not cause me so much discomfort. I got heightened sense of smell and became very sensitive to stimuli.
Felt like I was in fight or flight mode constantly and very much anxious. Neuropathy got worse and lots of burning in my skin, all around my torso and arms.
The only thing that helped me to detox and keep me going forward was acupuncture, but my acupuncturist and I knew that it wasn't enough, so we started me on Chinese herbs for Lyme.
Before starting the treatment, a few things did get better which is my heightened sense of smell and I don't feel like I am in constant fight or flight mode, but I do feel like my body is tense, anxious, and very much in pain. Neuropathy and burning sucks sad.
I have a hard time understanding if I am having a die off symptom, if I am reacting to something, or if I am flaring. Every time I eat, I feel my neuropathy and burning in the skin get worse. Also my brain feels inflamed and I get more panicky.
Then I take my herb a little bit after. But I don't understand which food I am reacting to. And if I am reacting to the herb after.
Ugh. However, I think I do react to eggs, nuts, chamomile tea (the only tea I ever drink), and fruits, because it becomes clear as day when I consume these things, so I decided to not eat these things.
I feel like though I am overreacting to things and wonder if this is how it is while you have Lyme and if it gets better with treatment.
I am wondering if it's my limbic system or my nervous system or my mast cells or histamines or if I have oxalate crystals (one doctor said I have in my blood, but it was awhile back and I tried to be on the diet, but it is so restrictive and I felt that I wasn't getting enough nutrients). And I am so sensitive to supplements as well. Hard to start something new.
Fortunately on Tuesday I will go to an integrative Chinese medicine clinic that does testing for mast cells, histamines, and food sensitivities.
I want to make sure I eat food that won't flare my symptoms and prevent me from getting well faster. I am gluten free, diary free, sugar free.
Has anyone ever been in such situation?
Maybe it is leaky gut too (I do have GERD and my stools are not well formed even though I take probiotics and eat clean, also I did change probiotics and think I may be having die offs now, but that's unrelated to the food I eat, I think)?
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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Brussels
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Hi, first thing: your questions are questions we all do. Are these good reaction or bad ones? Are we reacting to treatment or is it lyme getting worse? Am I getting better or worse? Are these supplements doing good or bad?
All very normal questions that people with lyme have to ask every day, many times a day, unfortunately.
No one knows for sure.
I can 'feel' by your posts that you are very aware of your body. So consider yourself a lucky person, because this is a gift not many people have.
What you describe as fight or flight reaction is very clear to me. It can be both infections or toxins.
In my case, it was more toxins than infections / inflammation.
How can I be sure? Because when I took binders, in right amounts, many times a day, this EXACT fight or flight feeling totally disappeared, and I felt RELAXED, until toxins built up again and I needed more binders and so on.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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As for allergies, specially for food: lyme makes it bigger, no doubt. It's SO COMMON that some practitioners say that without a proper diet, individually tailored, you can't get better.
So you are doing well to avoid some foods you react.
I went to a kinesiologist who tested all foods (dr. K's approach) with energy testing so they could eliminated all foods I reacted (some I knew, because they made me feel bad, but some I didn't).
I eliminated all of them, and felt better, so I got on that diet.
After lyme was gone, many allergies or reactions disappeared very fast. AS fast as they came. Some remained though, but not that bad as with lyme (during lyme, I had the impression every week I had at least 2 foods I got intolerant... or allergic...).
Keep these away, to avoid fatigue.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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If you feel well with acupuncture, you'll feel well with tapping: it's a way to do acupuncture by yourself, at home, daily, many times a day if you'd like, only through tapping.
You can google EFT tapping or so, and learn the EFT points. Try to tap each EFT point about a minute each (it is not long, very fast) and see for yourself how powerful this can be.
If you do that, I'll teach you another important points (just 3 more, that I swear, are wonderful!!).
I have many years experience with these points, and they work REALLY like acupuncture at home, any time, no needles needed!!
good thing: totally for free!
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
You sound just like me. I have Mast Cell Activation Syndrome as my main issue.
I don't tolerate any herbs anymore. Period.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
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Lymetoo,
Peppermint, parsley, basilic, oregano, cilantro, chamomile are herbs, as well as Japanese knotweed (it is food in China).
Dandelion and nettle, used in salads, are herbs...
when you guys say 'I do not tolerate herbs, period', does it include lettuce, all spicy herbs used in salads and cooking?
Or do you mean anti-microbial herbs like coptis (extremely strong), oregano oil, stuff like that?
Can this mast cell disease also affect animal protein (like some people that became allergic to meat?).
If yes, wasn't that disease labelled MCS (multiple chemical sensitivity) some years ago?
Some people with MCS in the past (with lyme and MCS) said they were allergic to EVERYTHING, including ALL FOODS, no exception?
They did blood exams and confirmed the allergies of absolutely all food types, at least, so they said.
If that is the case: isn't the problem with absolutely EVERYTHING, not only herbs, but with most foods and many other chemicals in our environment?
It's just a question, trying to understand the statement 'I can't tolerate any herbs'.
Posts: 6199 | From Brussels | Registered: Oct 2007
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quote:Originally posted by Brussels: If you feel well with acupuncture, you'll feel well with tapping: it's a way to do acupuncture by yourself, at home, daily, many times a day if you'd like, only through tapping.
You can google EFT tapping or so, and learn the EFT points. Try to tap each EFT point about a minute each (it is not long, very fast) and see for yourself how powerful this can be.
If you do that, I'll teach you another important points (just 3 more, that I swear, are wonderful!!).
I have many years experience with these points, and they work REALLY like acupuncture at home, any time, no needles needed!!
good thing: totally for free!
Brussels, thanks so much! I am gonna try EFT this way. The one where you have to speak makes me feel negative and I don't want that, but this is simple enough to do!
What kind of binders did/do you take to get rid off toxins? I think I may have build up of them, but it is hard to tell. Unfortunately, I can't take many supplements due to sensitivities and it is hard for me to detox because of MTHFR and other gene mutations. I dry skin brush, drink lots of water, and do acupuncture. My acupuncturist makes sure that I am detoxing with her therapy. I am wondering if it is enough.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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Brussels
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Acupuncture is great, but it is not enough for detox due to heavy metals (your body cannot do much of the job alone, because we were not built to recognize heavy metals in such high concentrations).
And as for herxes, these are the main mechanisms some critters use to defeat our immune systems. They developed that for millions of years, so it is effective (otherwise, they wouldn't be here).
so acupuncture can help with herxes a bit, but in my opinion, it is not enough.
My binders are the ones I posted in another thread: Many Good Supplements to Detox your Body.
posted
tepid .. I'm concerned this is what YOU have.
Brussels.. I can season with salt and chives.
As for other herbs, I tolerate just about nothing. NO essential oils, no other herbs.
I DO stubbornly take curcumin. It seems to be lower in salicylates than turmeric. Because it is an anti-inflammatory, I think it does more good than harm.
In my opinion, MCS is a subset of MCAS. SOME with MCAS have no issues with scents, etc ..but most who have MCS very likely have MCAS. They just haven't been diagnosed yet.
So far, I can eat meat proteins. I also eat any foods low in salicylates, like romaine or iceberg lettuce.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by Lymetoo: tepid .. I'm concerned this is what YOU have.
Brussels.. I can season with salt and chives.
As for other herbs, I tolerate just about nothing. NO essential oils, no other herbs.
I DO stubbornly take curcumin. It seems to be lower in salicylates than turmeric. Because it is an anti-inflammatory, I think it does more good than harm.
In my opinion, MCS is a subset of MCAS. SOME with MCAS have no issues with scents, etc ..but most who have MCS very likely have MCAS. They just haven't been diagnosed yet.
So far, I can eat meat proteins. I also eat any foods low in salicylates, like romaine or iceberg lettuce.
How on earth can one deal with this? OY! Well, fortunately I will have my appointment on Tuesday to see what's up with integrative health center.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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quote:Originally posted by Brussels: Acupuncture is great, but it is not enough for detox due to heavy metals (your body cannot do much of the job alone, because we were not built to recognize heavy metals in such high concentrations).
And as for herxes, these are the main mechanisms some critters use to defeat our immune systems. They developed that for millions of years, so it is effective (otherwise, they wouldn't be here).
so acupuncture can help with herxes a bit, but in my opinion, it is not enough.
My binders are the ones I posted in another thread: Many Good Supplements to Detox your Body.
Thanks for sharing! Wish I could tolerate it all, but I'll find out on Tuesday what's going on, maybe I have mast cells issue like Lymetoo. That's a different approach right there.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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posted
Re heightened sense of smell, I sweated out on a biomat for 6 months and suddenly I was not bothered by smells much, as I had lowered my toxin level.
Now I sweat out in a portable sauna tent.
If you can handle heat, it's something to consider.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
My lyme doc said, when I asked about heavy metals...something about not doing anything for fear they will move to the brain, so to treat the lyme stuff first. I didnt quite understand.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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randibear
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I can't tolerate herbs or abx anymore. I just keep adding to the list. so many things, odors, clothing items, cosmetics, etc.
I keep thinking surely this all can't be lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Robin, that is great! I improved on the heightened smell thing myself overtime.
Lymetoo, I am taking lightning pearls by classical pearls. They have curcumin and asparagus I think there :/.
6hynone, yeah it is always best to treat lyme first instead of heavy metals.
randibear, I am so sorry, I feel like we're on the same boat. I don't think it's all Lyme either.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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Brussels
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In my opinion, it is NOT lyme, but can be lyme TOXINS.
I do think toxins (heavy metals, die off toxins, other toxins from environment) are LARGELY underestimated here in the lyme community.
They try to convince themselves that they HAVE to get sicker after treatment for getting better after.
The problem is that in most cases, you just get sicker, but it takes AGES (if you manage!) to get better 'after'.
some people will even not get better, unfortunately.
Look: I do not have lyme for the last 7.5 years, nor my daughter. I have though candida (on and off), and if I do not clean toxins off, I have LOADS of problems:
insomnia, anxiety, tremors, funny sweats, low body temperature, I get angry, funny types of hunger (for oils, for example), and the more I'm like that (= fight and flight mode), the more I get:
I do not have lyme anymore, but DURING lyme, I had everything I have today, if I let toxins on the run, but about 10x worse than now (with lyme).
Look at Lymetutu: she has no lyme either for a long time. But her food allergies and other allergies just keep increasing. She also fights candida, chronic candida.
It is not only lyme! I think it is DIRECTLY related to toxins!
People with lyme think they take 2 pills of chlorella, one lemon, and drink loads of water, take a couple of green teas or something like that, eat veggies, and that is ENOUGH for detoxing!!
this is just a joke. It is NOTHING compared to what I had to do during active lyme!!
I spent my days drinking about dozens of pills of chlorella MANY times a day (at least 6 times, religiously), rubbing oils, taking so many supplements (dozens again),
homeopathics, acupuncture massage (tapping, sometimes even with needles), electrotherapies, whatever,
ALL THAT JUST to keep my body CLEAN of die off toxins (and other toxins).
All these supplements were not for killing. Just for cleaning!
About 80% of my energy was dedicated to that cleaning job.
80% of my treatment was only detox.
Detoxing was where I concentrate my money, energy, and TIME. All the 3.
Like that , my food allergies got under control (not skyrocketing), anxiety to the minimum, my digestion improved amazingly well, and I could finally feel relaxed (until next strong herx).
Chronic infections (Bb, babesia, bartonella, FSME, candida, fungal infections), all these nasty critters use TOXINS as a main weapon against us!
I do not have any single doubt how AGGRESSIVE are these toxins.
Let the toxins on the run, the pathogens will thrive very easily and the immune system goes bananas:
you'll get neuro symptoms for sure (they are called NEUROtoxins!!,
you'll never feel RELAXED (relaxation is THE number 1 thing to aim during infections!!!)
and the gut gets in such a mess (because the liver is toxic, and the gut is toxic...) that no way you'll get rid of allergies (you'll only get more allergies, and that is totally understandable, as these toxins destroy the gut walls).
The only way out (with or without lyme) is detoxing as the MAIN strategy (not a side dish, but main dish!!).
Some people are lucky just with one therapy (biomat, or infrared). Others need incredible amount of imagination to find out detox therapies, products etc.
Allergies are the most awful thing to live with. I feel SO SORRY for you guys.
Having a label name for a disease won't help healing. New labels come and go. Only detoxing, in my opinion, will take you guys out of the allergy circle. I'm not totally rid of my allergies, but they are MUCH better, I'm touching wood!
Another symptom of toxicity is electrosensitivity. If you are badly sensitive, think toxins!! Specially heavy metals.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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During very active lyme (when I got re-bitten so many times, then I had a double infection, acute on top of the old chronic infection)...
the only moments I felt deep relaxation, was after binder ingestion: it was as though someone was doing a wonderful massage, internal massage, it was profoundly relaxing.
I do think that is a great way to know when we are getting the right binders (or not). If you can't feel relaxed like that for at least, an hour a day, it means, something is wrong.
Fight and flight mode does not mean INFECTION only. It mainly means TOXICITY, because in my worst times of infection, I had a couple of hours with TOTAL relaxation!
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels, you are so right about detoxing. But how does one go about it when they have gene mutations that prevent them from detoxing properly? I used to do so much myself and I must say it has helped me through the worst of times, but then the toxins got so bad that I couldn't tolerate anything anymore without reacting. Also I wasn't in proper treatment for a while, so that didn't help me. What kind of binders do you take?
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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Brussels
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Detoxing is not taking cilantro (mobilizer), nor alpha lipoic acid (mobilizer) or anything that mobilizes toxins MORE than bind to them.
I don't have a definitive solution for you guys. Lemon helps a bit. Water helps a bit. Anti oxidant foods and teas help a bit.
Clay is usually easily absorbed and tolerated (it helps a bit too).
Sulphur rich foods and herbs or supplements are THE thing to concentrate (as they bind to heavy metals and other toxins), but some people can't even take onions (so forget about sulphur).
I love anything containing sulphur (garlic, onions, bear garlic, MSM etc): they were not little help, but BIG help, if taken in right amounts.
When you can't take supplements, take food, teas, etc. We evolved with them, not with supplements. That is where I would start.
You got to find the best magnesium that exists in the market for you: if you can't stomach, you have to rub (transdermal magnesium).
There are salts, different types for baths, skin baths. they won't help a lot, but if done regularly, yes.
Any electrotherapy or other therapies that help detox (FORGET about killing, until your body stabilizes) are like God given (some people swear by the biomat, I like my PE1 infrared, even though I think EACH person must find what fits, because these stuff may also mobilize toxins).
If you can't take chlorella, think green leaves. Very green leaves and eat them as MAIN meal (in huge amounts, I mean).
Oils: can't be forgotten. All oils you can take, clean, with balanced Omega 3 and 6. The body needs them in great amounts (specially nerve cells, brain).
Miss your daily magnesium: thousands of metabolic reactions cannot be performed by your body.
It's very easy to miss an important point, that is what I mean.
It's like an orchestra: forget some instruments, here and there, and the music won't sound as good.
Each member of the orchestra has a purpose. So must be your detox plan.
I react to chamomile tea, or peppermint, or Roiboos (baby teas!), I was a total KPU (porphyria) example, my liver was in constant pain for years,
... my skin dark or purple looking like a corpse most of the times, my kidneys get in pain on and off, I had all symptoms of toxicity (air hunger, numbness, tinnitus, sun light sensitivity, food allergies increasing almost daily...).
If my body's detoxing paths were open, functioning, you can bet I would be able to drink chamomile tea!
Here in Europe, they do not do tests to see if your detox pathways are blocked. At least, dr. K's followers didn't do that.
According to dr. K., all chronic infections patients do not detox well. That's simply a fact.
In his view, if they detoxed well, they wouldn't fall ill with chronic infections!
You don't need to test to see if you can't detox: no one here can! That is why we need binders.
Binders that help me, can harm you. And vice versa.
If you wait too long, you may get to the point of very hard return. Not all people will get there though (no return).
But when you get allergic to almost every FOOD, that is horror.
Because at that point, of course, you'll be allergic to your supplements (that are less friendly than food), to all drugs, even to yourself (own sweat, own joints....).
At that point, only very knowledgeable practitioners may help you.
I don't know how people get better without energy testing, because I reacted to things that were very mild and friendly for others.
Only energy testing could pick what I could take, the amount, the frequency... That is how I figured out my supplements, herbs, cleaning stuff.
that your pathways are blocked, this is fact. Not only yours, though, all of us, chronic infection sufferers.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels
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Tutu, I'm so sorry to know you are reacting to all these foods, supplements.
I remember when you were taking a juice daily years ago (a fruit juice, I forgot the name...) because you swore by it.
It helped you in the past, how does it feel today?
The problem with chronic candida is that toxins still build up, like with lyme, but it is SLOWER.
So we do not see as clearly as with Bb herxes.
I know they were with me, because after lyme was gone, many allergies disappeared as fast as they came.
But candida continued, slowly, but surely. It took years after lyme to re-start having again more food allergies.
I came back to lymenet, when I realized my allergies were skyrocketing (about 2 years ago).
I started to panic. I didn't want to go back to treatment (after lyme, I wanted vacations forever!!!), but that problem FORCED me to treat again.
I know how awful can the situation be, and I'm so sorry people have to live this hell of multiple allergies this way. It is even as frightful as worst times with lyme...
My suggestion is only energy testing + good practitioner... I'm still on daily kimchi + cistus + binders, and I'm still crossing my fingers that was the solution for my food allergies (but only time will tell).
Posts: 6199 | From Brussels | Registered: Oct 2007
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Brussels, thank you so much for such wonderful feedback. I am sorry for all that you went through. I hope you are feeling better.
I feel like Lyme isn't the biggest issue anymore (if I even have it), but the toxicity I feel after all the treatments I've gone through. Since I am challenged with MTHFR and other gene mutations, it is hard for me to detox and methylate properly.
I am also reactive to everything, even good food now (even if it is anti-inflammatory and good source of folate, etc.). Starting a new supplement gives me a terrible overreaction. But I just went to an integrative clinic that does Advanced Allergy Therapeutics. We will be working on restoring the functionality of my organ systems and getting rid of these overreactions I have.
The naturopath said it is important for me to supplement, but I am not ready yet to take in anything until we fix those mast cells/histamine issues. She gave me liposomal Vitamin C which isn't supposed to make you overreact to it and will stabilize mast cells.
She told me I am very much depleted of all the needed nutrients. But hopefully we'll get that under control. I agree with you, detoxing is so important.
And whenever I was supplementing with different detoxing supporting supplements I felt relatively OK even with Lyme, but I was self-supplementing, no doctor or alternative doctor ever told me what I should be taking in my condition and what diet I should follow, etc.
Saw a bunch of them with different opinions and tried their regimens which only made me feel worse. And now because of that I am too sensitive to everything.
posted
Lymetoo, this is so sad, I am so sorry you are going through that. Here is the vitamin c I started taking, which is suitable for the most sensitive souls: http://physicaenergetics.com/dv/products/CAMU-CAMU-Vitamin-C-Liposome..html. I don't think I react to it, but it is hard to tell between my meals and other supps and other triggers lol.
Posts: 74 | From Lawrenceville, NJ | Registered: Dec 2016
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I've been sensitive to Vit C for at least 25-30 yrs. I think it's because of the sals. There are quite a few people in our group who have the same issue.
It always gives me acid reflux and/or bladder pain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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. I am sorry you are dealing with this!
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