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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone else...no relief from detoxing?

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Author Topic: Anyone else...no relief from detoxing?
carolync
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I have been treating for 2 years (again...been battling lyme & co's for 22 years) and all along the way these past 2 years I have been trying to detox with various methods...different types of binders, chlorella, lemon, detox teas, milk thistle, dandelion root, castor oil, epsom salt footbaths, ionic footbaths, NT-Detox from Byron White, Burbur/Pinnel, etc, etc, etc.


It does not matter what form of detoxing I do, but I almost NEVER get symptom relief. In fact, it puts me into an even worse spot symptom-wise...even at teeny-tiny spread-out doses. I think over the past 2 years I've felt a REAL detox clearing that actually brought me relief maybe 10-20 times.


I don't know what to do anymore. I have baffled my Lyme Dr who has been helping Lymies heal for 20+ years, she doesn't know what to do about it. My liver is fine, organs are fine, liver enzymes fine...despite getting liver pain sometimes when trying to detox.


I've been to one of the top Lyme/Detox genetic practitioners in the country. He studied my genetic mutations and put me on supplements to try and get my body to detox better on it's own and I crashed so HARD on his treatments to the point I literally had no choice but to stop.


I feel so alone in this and feel it is keeping me from getting better. It is beyond depressing. Please tell me there is SOMEONE else out there who barely gets relief from detoxing and that it just keeps you feeling awful??? I am at my wits end with this and don't know what to do anymore.


If any of you have been through this or know of someone who has, can you please bring me some hope? Do you just have to keep pushing through it very slowly and EVENTUALLY you break through??


Besides genetics, what else can make a person's detoxing so extremely hard? Can there be some 'reaction' involved like a histamine/mast-cell inflammatory response to the toxins simply being moved?? Or any other things that can happen when you move toxins??? My Lyme Dr is clueless and I need some ideas.


The genetic guy I worked with said I'm just so backed up with toxins since my body doesn't detox well (because of genetics according to him, I'm not convinced) & from all the years of illness, so anytime I try and do something to detox, I'm just clogging myself up further...


He said picture a sewer drain being clogged and everytime you try to detox, you're just clogging it further since you're not addressing the root cause of why it's clogged (these genetic issues) He said his job was to work on those root issues and "unclog my drain." Great theory but when his stuff was extremely rough on me and not solving this problem & making it even worse, I've literally thrown my hands up in the air. He started wondering if the issue was environmental toxins sooo....


I just finished working with someone who found I had GMO poisoning, pesticide, herbicide & glyphosate poisoning. He felt this is why things have been so hard for me. That really got my hopes up for an answer finally. We've cleared all that out with a powerful detox protocol that put me through hell. I don't feel any change for the better and now when I try and do anything to detox like take a tiny bit of a binder or drink a tea, it still just makes me worse and no detox-clearing or relief.


All I want is sweet relief from detoxing, not torture. [Frown] Anyone else ever experience this??? It never ends...I take something to detox, get my usual bart marks or some red patch on my skin within 20 minutes or less, feel the detoxer mobilizing 'stuff' in me and the symptoms get worse and no clearing.


I've been wanting to post this for a long time but am afraid to hear yet again...that I'm the only one. I can't handle hearing this one more time from a practitioner or from anyone, I'm praying someone here can relate to NOT getting relief from detoxing. I found a post here yesterday where someone mentioned that some of you have a lot of trouble detoxing. True? How do we ever recover like this? Just time & pushing through?

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Keebler
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It may be that the "event" or "action" of "detoxing" is just too aggressive.

The term, "detoxing" or "detox" tends to set off an alarm for me in that, so very often, it is viewed as an aggression action - it should not be. It should never be that.

Rather, you might find cutting back on any methods, events or actions that promise "detox" and going to a simple liver support plan might be of help.

See liver support thread below.

In addition, lymph support with gentle self lymphatic massage is usually also helpful. However, I suggest avoiding any alcohol based homeopathic products if they tend to bother you.

Even a drop or two under the tongue really did me in as I tend to have some kind of mast cell alarm that trigger histamines.


Chlorella & Spirulina might be excellent support, too, for entire body in various ways. Yet, as with all things, start separately and slow and gradually work up to a typical dose or one that is comfortable for you.


If any thing is too much, do not do it. Just don't. There are always other ways to approach and various methods that you might have to test out for yourself. Go slowly. always.

These "actions" are not "events" but low key ongoing gentle support measures. You might start with just dandelion for liver support and then, later on move on to milk thistle.

Nutrients and avoiding the things that can hurt the body as well are important. A LOW OXALATE & LOW LECTIN diet can also be of great help if you find those food cause you pain or harsh symptoms.

For oxalate detail, search: Sally K. Norton

for lectin, detail, at YouTube, see the recent presentation by Dr. Paul Mason.

LOW HISTAMINE Diet, too, avoiding things like vinegar, etc.

Be sure you and your home are scent free and you don't have new textiles that might be coated in flame retardants or other chemicals.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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carolync
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Thank you Keebler. I sometimes wonder if I'm just living in a body that doesn't want to be PUSHED to detox, like you're saying...go through that aggressive 'action'.


I have always been extremely sensitive to everything so it makes sense that this might be too much for my body. It's just crazy to me because if I'm so backed up, how is all of that going to "get out?" Is gently supporting my liver enough?


I wonder if just a very healthy diet and TIME would be enough for me. Do you know of any Lymies who can't do the usual detox methods...and have recovered?


I eat the Wahls protocol, very high veggies everyday. I love vegetables and honestly I feel so crappy all the time, I can't tell if any particular food makes me worse. I know nothing about the oxalate issue or lectin issue but will watch the videos.


If I cut out veggies, I don't know what's left...just meat? I don't do well with grains, rice, nuts, etc and am still working on healing my gut.

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carolync
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Oh and yes... I've had MCS issues the past few years since I got worse. Our house is safe, no chemicals, scents and I've got MCS filters running.


How in the world can you know if a mast-cell issue is happening or a histamine reaction??? And why would a low-histamine diet help a detox issue? I was just told that my histamine level is fine but sometimes when I take benadryl it 'sometimes' calms down this extreme detox reaction. (not always) Maybe it's just sedating the symptoms and not lowering my histamine since I'm told it's 'normal.'

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Keebler
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You don't "have to cut out all veggies" -- just study up on oxalates and lectins and devise a list for yourself of foods that you know are low in those and, therefore, safer than others . . . less likely to cause a reaction or damage for someone sensitive -

for now - then later on when you feel better maybe add back in very small amounts of a food that might just be a little higher in one and see how you feel.

The kinds of histamine reactions I'm talking about can't really be monitored by some kind of routine blood test.

If you find you feel unwell after consuming a food that is moderate or high histamine, that's a big clue.

Search: "Low Histamine Diet" ""Mast Cell"

Search: "Trying Low Oxalates" and "Low Oxalate Diet"

as well as "Low Lectin Diet"

you will find various lists. Comparing them will take a little time. I have dozens of articles in my file notes but are not compiled. If I have energy enough, later on I may add some links but the names I posted earlier and then the search terms should help.

This may take hours and hours of study & it may be overwhelming so pace yourself.

I know no way around the hours of study to really learn all this. And time to see your individual reactions to various foods. Be especially careful about vinegar. I suggest avoiding it totally for a while.

. The good thing is that even just 20 years ago, Google did not even exist and searching - and learning - was really so much harder.

Take it slowly. But please keep at it. What you learn from these searches can be tremendously important to your future.

For starters: Avoid Spinach. Just six leaves can be sky high in oxalates.

Some kales are very high. Lacinato Kale is said to be lower.

Sally K. Norton, see her websites and also YouTube presentation / interviews at the Ancestral Health Conference. Other presentations to see by:

Elliot Overton - EONutrition - excellent Oxalate videos

Dr. Georgia Ede

George Diggs, Ph.D.

Dr. Paul Mason

After watching their presentations, then go to the VP Foundation and see their oxalate lists. Even in you don't have VP issues, their lists are some of the most accurate.

Almonds are high, too. and some other nuts. Almond milk or flour, even worse.

Still there may be room for 1/4 cup of pecans.

As to why I suggest oxalates, lectins and your possible response to histamine-triggering foods might be key to the reactions you are getting:

after seeing the presentations, this should be clear. I just can't easily find the concise sentence to explain.
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[ 04-23-2019, 01:28 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/36235

CHLORELLA & SPIRULINA - Informational Links


p.s. It would be safer for you to delete your name / website from your posing signature. It's never a good idea to put personal information in posts - for your privacy safety.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/92623?

Please Do NOT post your real name. Why not?
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MannaMe
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My hubby has to take everything very slow.

He doesn't detox well either - genetic testing to prove it.

He's doing lemon water every morning, epsom salt foot soaks each day, and either a foot soak or a foot detox before bed each night.

He's taking chlorella at bedtime and during the night takes charcoal and psyllium husks.

He's far from recovered, but is not getting worse. Its a VERY slowwwwww process.

Hope you can find something that helps.

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Bartenderbonnie
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The only thing I can offer is to add exercise.
To get the lymphatic system to drain.

I have a mini trampoline that I bounce on. I have vertigo with or without meds. I lean the trampoline againest a wall so I can brace myself. Nice little bounces.

Also weight-resistance exercises. The Dollar Store sells resistance bands for 4.00. Every 2 or 3 days I work on my arms and legs. Start slow while sitting in a chair. I always feel better after I exercise.

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Robin123
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Have you ever tried sweating, either in a sauna or on a biomat or similar?

I lay on a biomat for 6 months covered in a sleeping bag, and one day I could suddenly be around chemicals without reacting. I had sweated enough toxins out. It took 6 months, once a week, to get down below threshold.

Now I have an IFR sauna tent.

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DebraKelly
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I had to detox along with the MTHFR gene. It was tough! Infrared sauna for 50 minutes for one year helped me a lot along with charcoal and a list of supplements along with exercise. It can be very frustrating but keep doing and asking questions it's the way through.
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carolync
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quote:
Originally posted by Keebler:
-
The kinds of histamine reactions I'm talking about can't really be monitored by some kind of routine blood test.

If you find you feel unwell after consuming a food that is moderate or high histamine, that's a big clue.

Search: "Low Histamine Diet" ""Mast Cell"
-

I feel so awful all day long and symptoms come and go constantly, it's impossible for me to know what makes my symptoms worse...even from food. Because of this though I'm just going to play it safe and cut out moderate to high histamine foods. I haven't had vinegar in years, the only thing I have each day that I think is high histamine is organic bacon...I'm going to miss it so much!

What I'm wondering Keebler and I'm sorry if you mentioned this above (I'm feeling so bad and am struggling to write back) is...

Can people have histamine reactions or mast cell reactions to the lyme & co toxins?? That's what I'm wondering, if that could be a possibility of what I keep going through when I try to detox. Is that possible to have a histamine reaction to the toxins?

I will definitely search for mast cells on here, etc when I can...rough days and can barely be on computer.

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carolync
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quote:
Originally posted by Keebler:
-
As to why I suggest oxalates, lectins and your possible response to histamine-triggering foods might be key to the reactions you are getting:
-

Keebler, do you mean here that the oxalates, lectins, etc could actually make a person's detoxing reactions worse? I'm trying to understand why eating oxalates (or lectins) could have anything to do with really harsh detox reactions...I want to understand that. Is there anything you could share with me on that? Just trying to understand any and all possibilities of what I might be going through with my detoxing.


I really don't eat that many high oxalate foods, only sweet potatoes and I guess kale...will cut those out now. I don't really eat anything with lectins. I do eat zucchini sometimes, I read that squash can be high. I also eat frozen blueberries and cherries...sounds like they might possibly be high in lectins but not sure.

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carolync
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quote:
Originally posted by Robin123:
Have you ever tried sweating, either in a sauna or on a biomat or similar?

I lay on a biomat for 6 months covered in a sleeping bag, and one day I could suddenly be around chemicals without reacting. I had sweated enough toxins out. It took 6 months, once a week, to get down below threshold.

Now I have an IFR sauna tent.

Thank you, just tried my first session of sweating with a running shower today. I would LOVE it if this could help me actually get some detox-relief, will have to keep going and see.
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carolync
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quote:
Originally posted by DebraKelly:
I had to detox along with the MTHFR gene. It was tough! Infrared sauna for 50 minutes for one year helped me a lot along with charcoal and a list of supplements along with exercise. It can be very frustrating but keep doing and asking questions it's the way through.

Thank you for the encouragement. So did your detoxing feel horrible as well and flare you (with no obvious symptom relief) since you were doing it with the MTHFR gene? I'm praying that as I continue one day I'll get a breakthrough. Just feels like my body is sending out red flags all the time that the detoxing is too much for my sensitive-body to go through.
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Keebler
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"Detoxing" IS Too much for your body right now the way it's going on.

No one - no one - no on at all should feel bad, ill, or at wits end while "detoxing" (a term I still really hate).

Basic liver support - baby steps - is likely better. We can't make our body "detox" as it's all up to the liver & kidneys. Stop pushing them and just support them, gently.

You have permission not to knock yourself out, really. That's always counterproductive if something you are doing causes trouble. Back off, back a-w-a-y. It does not have to be hard. Really.

Good luck.
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carolync
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quote:
Originally posted by Keebler:
-
"Detoxing" IS Too much for your body right now the way it's going on.

No one - no one - no on at all should feel bad, ill, or at wits end while "detoxing" (a term I still really hate).

Basic liver support - baby steps - is likely better. We can't make our body "detox" as it's all up to the liver & kidneys. Stop pushing them and just support them, gently.

You have permission not to knock yourself out, really. That's always counterproductive if something you are doing causes trouble. Back off, back a-w-a-y. It does not have to be hard. Really.

Good luck.
-

I'm hearing you and I agree that the "detoxing" pushes me too far. I will try once again to back way off. Unfortunately even when I take breaks from detoxing I am still extremely symptomatic, cringing in a ball and cannot function. My case is so extreme, I've tried it both ways and I've been unable to find any "place" where I don't suffer..

. Unfortunately I don't have a choice whether I feel extremely ill or not, it breaks my heart everyday. I envy Lymies who just know that if they don't "do" something they can get some relief. I don't understand why but there is literally nothing obvious with me. I will keep trying though with a longer than usual break. Hopefully something would change. Two things...


1) If you barely do anything to detox other than gently support the liver, how does one continue treating/killing? I am going extremely sloooow with my killing because of my trouble detoxing (baby doses & not every day).

Between my tiny does of treatment and a probiotic, I'm constantly throwing off more toxins for my body to deal with because I'm so sensitive...I'm feeling constantly "backed up." But obviously trying the "detoxing" just makes it even worse most of the time.


2) Besides the gentle liver support, do you feel sweating is a detox-action that is too agressive? What I'm trying to understand about sweating is if it's "pushing" the body with detoxing. Or, is it a simple/gentle way of just "letting go" of toxins since they are just coming out of your skin? It seems different to me than pushing your internal organs, etc like with a binder. I would like to understand this regarding sweating
.

Keebler, thank you so much for your time. It is nice to hear someone say that "detoxing" can just be too harsh for some people...especially when the Lyme dr's just want you to keep going and trying. (Slowly) Hopefully one day I'll be able to find a "place" where I can gain some control and feel some relief. I pray for that everyday.


It's so confusing too when you have a genetic expert showing you with charts and data WHY you're not "detoxing" well...it gets in my head that there is truly something wrong with me and I just can't fix it even with his treatments to get the relief I so desperately need....

Even if I have a genetic issue why this is so extreme for me, I hope somehow I can recover despite that. It's a scary place to be, I just don't know who to believe anymore.


Thanks again for your thoughts. Even the Dandelion root tea can be harsh for me. Any other ideas of VERY gentle liver support? Like rubbing castor oil on once a day? Anything else?

[ 04-25-2019, 01:08 PM: Message edited by: carolync ]

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lymenotlite
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I had a neck adjustment by an osteopath and I firmly believe it dumped a lot of brain and neck toxins into my body. I was sick for several weeks with must have been a Herxheimer reaction. The way I stopped it was to fast for a day.

I'm treating herbally for mycoplasma pneumonia. Today I needed do another fast for the same situation, my second. Both times during the fast I coughed up a lot of stuff from my lungs.

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carolync
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quote:
Originally posted by lymenotlite:
I had a neck adjustment by an osteopath and I firmly believe it dumped a lot of brain and neck toxins into my body. I was sick for several weeks with must have been a Herxheimer reaction. The way I stopped it was to fast for a day.

Thank you. I have been doing intermittent fasting for the past couple months, can't make it past 19 hrs. Not sure if it's doing anything since I'm still stuck but will keep trying. My Lyme Dr's only other suggestion to me last appointment was a 3 day fast. I wish I could do it but I get to a point where I get this sudden thing where it feels like I'm about to black-out. Will stick to my 18 hours each day.
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Keebler
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It sounds like intermittent fasting for up to 19 hours is dangerous for you.

As you say you eat lots - lots - of vegetables, it may be that blood sugar is crashing the longer you go without food.

I'm only familiar with intermittent fasting for those who are on a ketogenic diet - and that is no more than 20 grams of non-starchy carbohydrates a day, no more than 10 per meal if eating twice a day.

When they go longer without breakfast, into skipping it into the lunch hour, when they are properly "fat adapted" intermittent fasting is possible and the body is in fat burning mode, not uses glucose as the primary fuel source.

If you are eating lots - and lots - as you say, of vegetables, your body is not likely fat adapted and relies on a steady stream of glucose from vegetables, even if non-starchy.

It sound very dangerous to be pushing your body by going up to 19 hours and then only allowing food when you feel the worst. Dangerous, indeed.

Do you have a blood glucose meter? If not, you should have one to know where your blood glucose readings are when you go longer than 12 - 14 hours without eating.

Even for those on a ketogenic diet and no more than 20 grams of certain carbs a day (that's about 3 cups of greens or cauliflower - no more) . . . fasting is often more difficult for women.

Some people, even when fat adapted simply should not be fasting. Some do okay with it but your body is sending you clear signs that it's not okay.

If you were getting enough fat on a well formulated ketogenic diet, including certain minerals and enough sea salt

and limited carbs and moderate proteins, for those who do well at intermittent fasting,

first of all they work up to it. Never proceeding beyond what is comfortable.

Due to the fat amounts in diet, hunger or feeling bad is usually not a problem. Yet, for some, especially some women, this kind of fasting does not work well and they should not push it.

But, with lots - and lots - of veggies, your body is not in this state. Even if you get a lot of good fat, when the carbs are over 20 grams, then glucose dominates, not fat. And fat is required as main fuel source to make intermittent fasting possible.

Read the works of Stephen Phinney . . . see his lectures on YouTube.

But fasting or anything else, if your body is crashing from it, don't do it. Your body is sending you red flags.

This is not a race, the person who suffers the most does not win. Find a way to make peace with your body and eat breakfast if you feel you need it.
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MannaMe
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Even the genetic supplements for my hubby had to be increased verrry slowwwly. And he is still at a low dose, not up to the amount recommended.

He found taking a shower several times a day helped him to feel better. Not always really hot showers, just letting the warm water run down over. He visualized the toxins washing along down the drain with the water.

Currently he is only using the rife machine as a way to treat. Anything else was too much, adding to many toxins to an already toxic body.

Yes, he also has a toxic dump after a chiropractor adjustment. He tries to drink extra water that day and does an ionic foot detox that night.

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carolync
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quote:
Originally posted by Keebler:
-
But fasting or anything else, if your body is crashing from it, don't do it. Your body is sending you red flags.

This is not a race, the person who suffers the most does not win. Find a way to make peace with your body and eat breakfast if you feel you need it.
-

I'm changing my diet now in the past couple days moving more toward keto, less veggies. That 19 1/2 hr fast experience was so scary, it was obvious that was dangerous for me. I found that 18 hrs doesn't effect me negatively. I don't even get hungry at 18, I eat a lot of fatty meat. I'm not even sure if the fasting at 18 is helping me move toxins, I might cut it back to 12-14 hrs instead.

When you get a chance can you please see my reply from earlier today and please answer my 2 questions that I marked 1) and 2)? Really wanted to get your thoughts on those.

Thank you so much for your time!

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carolync
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quote:
Originally posted by MannaMe:
Even the genetic supplements for my hubby had to be increased verrry slowwwly. And he is still at a low dose, not up to the amount recommended.

He found taking a shower several times a day helped him to feel better. Not always really hot showers, just letting the warm water run down over. He visualized the toxins washing along down the drain with the water.

Currently he is only using the rife machine as a way to treat. Anything else was too much, adding to many toxins to an already toxic body.

Sounds like I'm not the only one, thank you. My genetic practitioner had me start one thing a week and very small doses but it was still too harsh and fast for me....I was up to 7 or 8 supplements and holy cow...total crash.


Still debating if I should ever even try that route again. I might meet with my genetic practitioner soon and have a serious talk with him and explain I simply cannot do this...or we have to go so super-duper slow like one drop or tiny dose of one thing per week and only do that for months & months without adding anything else. Not sure I even want to put myself through that after realizing how any of this just pushes me too hard.


When you learn about these genetic issues you feel like you HAVE to work on them in order to recover but when it's too harsh on your body, what other choice do you have but to stop.


I'm sorry to hear about your husbands struggles and sensitivities, it's so hard. I hope one day he'll make a full recovery. Does he herx much from the rife? I've always been leary of the ride because I'm so sensitive.

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Keebler
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You might take a break from all supplements for a week. Seriously. Just focus on good food, rest, nature & art appreciation - however you can do that -- take a vacation from it all.

I don't know if you are taking any Rx right now for lyme but if you are, you might also want to taper back for a week.

Other notes:

you ask that I go back up and answer certain questions directed to me. I can't. I just can't. Sorry. I did find those but the answers are too involved for my energy level. I can only write some things - not others. Just can't form the sentences all the time.

What I can offer you, though, are some thoughts on things that sort of jump out at me.

You mention you are interested in starting the ketogenic diet.

To that, I ask: why?

You mention that you love vegetables (good), eat fatty meats (good) . . . and that you follow Dr. Terry Wahls' protocol.

Many have done well with that. My concerns are that

you get a blood glucose meter, though, and see what foods do to your levels, which ones work for you and which ones might not.

Also, too many veggies at any one time can really be hard on the gut.

If you love veggies and are used to eating 9 cups a day, as you say, I'm not sure why you want to curtail that. the Wahls plan might be your best fit.

First, though, if you wanted to change - it would be best not to go so low in carbs as the ketogenic diet requires but to just go "LCHF" low carb / high fat. That's about 50 grams of non-starchy veggies a day. Ketogenic is lower than 20 grams.

I would not at all recommend you go that low right now. I was not suggesting a ketogenic diet at all for you -- just that for those who do intermittent fasting, most of them are "fat adapted" and in ketosis.

Even for those on ketogenic diets, it is months on that before intermittent fasting should even be considered and it's not for everyone.

Really, first, though, if you stop trying to fast so long into the day and eat even a late breakfast of meat / fish / eggs and veggies . . . so that you get 3 meals for good

blood glucose stability and avoidance of what might be hypoglycemia from trying to fast too long into the day

the first step would be to review all your veggies / fruits for

OXALATE -- and for LECTINS and go low on those.


LymeNet Achives - search for OXALATES in "subject only" heading in both Medical (3 threads) & in General (9 threads) forums.

the most recent:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/37642?#000000

Topic: OXALATES .. More than just kidney stones -- thread started by LymeToo
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carolync
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quote:
Originally posted by Keebler:
-
You might take a break from all supplements for a week. Seriously. Just focus on good food, rest, nature & art appreciation - however you can do that -- take a vacation from it all.
-

Thank you for all of the information. I am definitely going to try a week break from all supplements, I can feel them taxing my liver. I do have a couple Rx's that I have to keep taking to literally be able to get through my day, they help to sometimes calm these violent symptoms I get and help me get upright to walk in the house a bit to get food, take a bath, etc. I really wish I could stop them but I can't. Hopefully stopping all the supps and antibiotic & probiotics will be enough to give my liver & kidneys more of a break.

If you're able, I would just like to know if you feel that sweating in a sauna is considered a "detox event" that can push the body too much? Or is it a gentle way of letting go of toxins? To me, it seems like sweating isn't pushing the body too much like supplements or binders would.

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Keebler
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Do not get too hot. Cozy warm, the temp of a low-heat infrared sauna (the kind suggested for lyme) would be fine but not a regular sauna.

Many with lyme are very heat insensitive, or worse. Getting too hot often exacerbates neurological dysfunction for those with lyme. High heat is also very stressful on the liver for those with the kinds of concerns lyme can bring.

Getting to hot is also taxing on the heart and the adrenals. It can take days to recover for many with lyme.

Even among those with lyme, once in a while there is a person who can "do" heat just fine. Most cannot. And they should respect that in the name of safety.

You can sweat just fine with lower heat, safely. Go low on the time, too, until you are adapted.

Same with a warm bath. Cozy warm for max of 20 minutes.

If you start feeling unwell in the least, gradually cool down.

Try to avoid getting too hot to begin with, though. Cozy, comfortable warmth is the goal.

ChiGong / /QiGong or Tai Chi - though gentle full body movement usually not involving sweating - can help increase circulation and that's really the goal, too.

A stroll, too, easy walking good as well. If you do not have access to a low-heat infrared sauna, a cozy warm bath seems a reasonable option - not quite the same yet any movement that gets circulation comfortably moving is good.

Just avoid the high heat typical sauna.

And do not shock your body with warm then really cold at the end like some might advise. That cold can truly be a stressful shock. Best for those in the best of health. A gradual cool down is best. Sudden shifts best to avoid.
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Keebler
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Talk to your LLMD if you are going to lessen or stop any Rx for a time. A good LLMD will help facilitate times like these where you feel your body might need a break.

Still, depending on your infections it might be best to consult them first in case it's a critical window of time to be on. And when on any abx, attention to microbiome matters so you might still require probiotics but be certain of the quality.

After some time off at least supplements, then you would add back on one at a time - slowly.

I'd then start with magnesium, next: dandelion tea. Just my ideas. Again, if your LLMD is good, they will know how to guide this experiment.
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Keebler
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My concern is that by trying to go so long into the day without food, your blood glucose could be crashing, putting anyone at risk. With a meter, you can figure out how your own body does with various changes in foods and fasting times.

[Though, as mentioned in previous post, for those in ketosis, "fat adapted" many can do intermittent fasting and have glucose still stay very nicely stay in range. ]

Affordable testing strips - and glucometer.

Why I think every home should have a glucometer:

To see where - anyone - is & how certain foods affect glucose levels. The idea is to keep glucose fairly level. Spikes can cause damage not just from the glucose but, actually, also by excessive insulin surges. Too much insulin can be toxic.

Wanted to share news about a good home glucose meter / glucometer - VERY affordable - as are the test strips.

And from the "tests" of foods like I did several months ago when a friend loaned me / gave me some strips, this is coming right in line to my findings then. I do find them reputable.

I got one about 2 weeks ago and find it easy to use. No prescription required. One can also find this at Amazon.com

While they offer a free "membership" and mailings every 3 months, that is more for the customer's convenience.

It is also possible to buy supplies not on the 3-month delivery plan.

I suggest one hour and two hours after "test" meals or foods. If a test food takes you high, keep testing periodically until it returns to normal.

For foods that are quickly absorbed, add in a test at the 30-minute mark.

For fasting blood sugar in the a.m. rather than test right out of bed, unless diabetic, to get an idea of where you are best to wait an hour or two if you aren't yet eating breakfast. Sometimes in the early a.m. it can be misleading (The Dawn Phenom.)

See YouTube for video segments from Dr. Richard K. Bernstein . . . The Diabetes University.

Great stuff for everyone to see, not just those who are diabetic but everyone so as to prevent where possible -- or reverse T2D, when possible, too.


https://diathrive.com/

DiaThrive - Glucose Meter, Test Strips
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carolync
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quote:
Originally posted by Keebler:
-
Do not get too hot. Cozy warm, the temp of a low-heat infrared sauna (the kind suggested for lyme) would be fine but not a regular sauna.

Many with lyme are very heat insensitive, or worse. Getting too hot often exacerbates neurological dysfunction for those with lyme. High heat is also very stressful on the liver for those with the kinds of concerns lyme can bring.

Getting to hot is also taxing on the heart and the adrenals. It can take days to recover for many with lyme.

Even among those with lyme, once in a while there is a person who can "do" heat just fine. Most cannot. And they should respect that in the name of safety.

You can sweat just fine with lower heat, safely. Go low on the time, too, until you are adapted.

Same with a warm bath. Cozy warm for max of 20 minutes.

If you start feeling unwell in the least, gradually cool down.

Try to avoid getting too hot to begin with, though. Cozy, comfortable warmth is the goal.

ChiGong / /QiGong or Tai Chi - though gentle full body movement usually not involving sweating - can help increase circulation and that's really the goal, too.

A stroll, too, easy walking good as well. If you do not have access to a low-heat infrared sauna, a cozy warm bath seems a reasonable option - not quite the same yet any movement that gets circulation comfortably moving is good.

Just avoid the high heat typical sauna.

And do not shock your body with warm then really cold at the end like some might advise. That cold can truly be a stressful shock. Best for those in the best of health. A gradual cool down is best. Sudden shifts best to avoid.
-

Thanks Keebler. I think I definitely pushed it too hard the other day when I first tried it. It ok me forever to break a sweat even with the shower running all the way hot. I question whether I will even sweat at all with a lower temp shower running, the only way I'll find out is to try.

If I do I'll do it for less time. I kept sitting in there hoping all the sweating would bring relief but I could feel myself getting more effected negatively.

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Keebler
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We all sweat out about a cup of water each night as we sleep. And all day long, too, we just might not realize it.

Even if you don't sweat much, our pee and poo will take out the trash, so to speak. We don't have to sweat gallons. Just get the blood moving and the rest will take care of itself.

Your water bill must be sky high with shower just running that long. If you have a bathtub, a warm bath might be more relaxing and save on water.

If you have a heating pad, you might use that on your back or belly - medium heat - just don't put it underneath you as you lie down. that will help your body heat up some to sweat a bit.

Now that spring is here, if you can get out in the sun for 20 minutes and that will help, too.

Came back to add in that you probably want to keep taking Vitamin D & K2 supplements every day if you take that. That's food more than other supplements might be to your body.
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Keebler
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Carolyn,

It not necessary to copy the post of everyone you reply to. Generally, it's easy to follow the conversation.
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carolync
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quote:
Originally posted by Keebler:
-
Talk to your LLMD if you are going to lessen or stop any Rx for a time. A good LLMD will help facilitate times like these where you feel your body might need a break.

Still, depending on your infections it might be best to consult them first in case it's a critical window of time to be on. And when on any abx, attention to microbiome matters so you might still require probiotics but be certain of the quality.

After some time off at least supplements, then you would add back on one at a time - slowly.

I'd then start with magnesium, next: dandelion tea. Just my ideas. Again, if your LLMD is good, they will know how to guide this experiment.
-

I'm pretty much on my own at this point, very disappointed with my Lyme Dr who has 20+ years of experience and says she's gotten everyone to at least 80% better. She's very nice, caring and likes to help sick Lymies. She had it, her family did and they are all in remission.


She doesn't understand why I've seen no progress, doesn't understand at all why I continue to be tortured by any detoxing. Says she's never seen this before, hearing that has made me feel sooooo bad, like I'm the only one out there who is beyond help.


I've been making really loud involuntary noises, involuntary screaming for a year (it is so embarrassing to even go to the office for a visit dealing with this) a half that started 6 months into treatment, she says she's never seen it this extreme before. My brain and nervous system are sooo affected.


I keep telling her the detoxing is making me worse, the treatment isn't helping, that I'm at the end of my rope and at the last appointment she said I can't help you anymore. All I can suggest is do a 3 day fast and then work your way up to a week.


I am so upset that a woman this experienced who has been able to help everyone else just doesn't know what to do with me anymore. I've been forced to manage myself after pleading with her for help.


I'm looking for a new Lyme Dr but honestly if they just keep trying all the same treatments on me and detoxing, I'm afraid I'll baffle them too...it's a very scary place to be.


And trying to even get to the appointments with the violent symptoms I go through daily is so stressful, it's disruptive in the office. So embarrassing, I just want to be able to go in stable but it's out of my control.


I really need someone to manage me in this extreme situation but finding a lyme Dr who has seen a case as severe as mine is beyond difficult. I don't even hear of anyone on the boards going through these sometimes constant noises I make. They are not just vocal tics which I get too but LOUD waves of unstoppable noises that rattle my house and torture me.


I know there are so many LLMD's out there but I need to go natural this time. I treated with tons and tons of antibiotics for years and it destroyed my gut, gave me Leaky gut, systemic Candida, tons of food reactions, allergies, hurt my immune...I'm just too sensitive now for mainstream antibiotics.


I treated with this Dr back in early 2000's for Lyme and she just kept plugging along with me but my symptoms are way more extreme now and she has no more ideas.


I've asked her about possible MCAS, histamine issues, maybe something going on with extreme cytokines and she just doesn't say much about any of that.

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quote:
Originally posted by Keebler:
-
Carolyn,

It not necessary to copy the post of everyone you reply to. Generally, it's easy to follow the conversation.
-

Sorry about that Keebler, this is the last time I do it...promise. I'm so desperate to talk to people who might have ideas for me I was concerned if I didn't reply to your comments with the quotes you might miss them. Wanted to keep the conversation with you going. Won't do it again.
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Keebler
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No need to be sorry. You can always use the person's name. Use sections of quotes that are key, rather than the entire post.

Whatever you want to do is fine, it's just that when entire posts are all duplicated, it gets harder to scroll down to the newer ones and you might miss some who want to post.

I'm taking a break from my computer for a while, though. Hopefully, others will continue to post.

My rule, after many years of pushing too hard is not to push too hard -- but try to figure out the most important points that might help with some changes or which to stick with and sweep out some others.

Take care.
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Keebler
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Just saw the post above the last one you posted, With the neurological vocal stuff - and hearing you say it takes you by surprise, I would not be in the shower or tub any longer than just to get clean.

No, I would not end with really hot water. The extremes in anything can be causing your brain and body lots of confusion. Stay steady even.

After hearing this, I would not stop your magnesium which I assume you are taking.

But, clearly, something has to change and I really do not think a 3 day with what seems like very little preparation / education from your doctor on how to do that safely - well, that's going to put your body at more stress.

The screams could be some kind of seizure activity -- don't be too concerned by that term, it basically means the neurons in your brain are just flooded with too much stimulating input

- if you can, treat it like that by going over all things that are pushing you -- anything stimulating you take / ingest, cut it out.

caffeine, anything that offers to "boost" you in any way could be too stimulating. Avoid all sodas, sugar, even artificial diet sweeteners and - sorry - even stevia for now. That can be confusing to the brain, too.

Maybe weak green tea.

Avoid all fluorescent lights - LEDs work okay but many fluroescents / CFL can trigger seizures.

Fasting can trigger seizure activity, too. Do. Not. Fast.

I can't say much more now yet I hope you can contact leaders of all support groups within a hundred mile radius and connnect. You need someone, LL, who understands this neurological condition.

Magnesium - the kind really matters.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM - Informational Links set
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lymenotlite
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I assume you are using drugs. They did not work for me with lyme and babesia. I also have Mycoplasma pneumonia.

I successfully treated babesia and lyme with herbs following the Buhner protocol and I'm now treating for M. pneumonia using his protocol for that. The M. pneumonia really has effected my brain.

I'm going to post how I made my own tinctures. I did that once before. It takes effort unfortunately but it's a lot cheaper than buying everything and you know what is in the tincture.

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Keebler
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Again, not to alarm yet to inform. Seizures can take any form - any neurological activity that your body does, can be short circuited when the neuron go a bit into overdrive mode.

There is a wide spectrum.

I suggest if you have not yet, do contact your local epilepsy foundation. Do not mention lyme. Do ask if they know of any doctors who have experience with unusual kinds of seizures, specifically describe your vocalizing.

The person there may think this is not the hallmark kind, but really, there are so many other kinds than that.

Just ask if they know a doctor more versed in this.

I am not saying this is a seizure disorder or even epilepsy (two different things). But you are having uncontrolled neurological activity and it could be some kind of seizure activity.

If you have hand any bumps to the head or tailbone, make note.

If you have not yet had some brain scans, EEG (though those miss a lot, still, important.

You need some of these base line tests.

Also find a new LLMD. A LL ND might be more appropriate for you.

If you have had chemical exposures, take note.

GAS ?

If you have gas heat, stove, water heater, fireplace or other . . . have the lines checked for leaks. Seriously.


I do suggest limiting your time out for your own safety - but mostly so your endocrine system / adrenals are not over stressed. And sooner or later, the screams might startle others so that's lot to try to avoid, I know, thinking of all the reactions by others to sudden screams.

A sense of humor can help a bit here but that's likely a bit raw by now, eh?

If you go to a park, call the city parks dept. and just inform them of what might happen but that you also really need some time in nature. Try to find times when little kids are not in some group activity but do still get out in nature.

You might find a therapist who does NEURO-FEEDBACK. there is a certification to this. It's helpful training no matter the cause, a good tool. It really helped me learn to feel seizure cues before they happened and then I could sometimes offset that.

Just search "neurofeedback" and your zip code. then really study up on their training, etc. Biofeedback can also help some, but the brain training with neuro is different.
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Keebler
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https://www.epilepsy.com/connect/forums/living-epilepsy-adults/screaming-during-seizure

Epilepsy Foundation - Community Forum

faecanuck posted

Q: Screaming During a Seizure?

I'm just wondering, apparently I scream while having a seizure, enough so that someone could think I was being murdered... Is this normal? I'd really like to know.

. . . [Keebler's interjection: This poster below is very accurate]

Halley Weaver posted 66 days ago:

Kenneth, what you're describing is one of nearly three dozen different seizure types.

During the Tonic-Clonic Seizure, which is a subset of the Generalized Seizure family, yes that is the typical layout of it.

However, Gelastic Seizures are defined by their uncontrolled bouts of laughter or giggling.

Dacrytic Seizures are marked by their grimace and wailing cry.

Dyscognitive, Complex, Autonomic and Simple Psychological Focal Seizures all address altered consciousness and

automatisms such as lip smacking, mumbling, screaming, picking at clothes, fumbling, pacing, garbled speech, emotional change, etc.
. . .

suebear replied:

As for testing? I had an EEG, a CAT Scan, an MRI, and video monitoring done as well.

It all depends on what is needed. In my experience the EEG does not always show and it required something more intense to see what is happening like an MRI.

If you ever do need to go through something like this, they do have MRIs that can be done openly instead of closed if your child fears closed areas. Sue (suebear)
. . . .

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Keebler
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Did not mean to bump lymenotlite's post, they posted while I was composing - so here that is again from a couple up.:

lymenotlite writes:

I assume you are using drugs. They did not work for me with lyme and babesia. I also have Mycoplasma pneumonia.

I successfully treated babesia and lyme with herbs following the Buhner protocol and I'm now treating for M. pneumonia using his protocol for that. The M. pneumonia really has effected my brain.

I'm going to post how I made my own tinctures. I did that once before. It takes effort unfortunately but it's a lot cheaper than buying everything and you know what is in the tincture.

by lymenotlite
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carolync
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Thanks Keebler. I have been thinking about going to a neurologist to have things checked out. I just want it to be someone who understands Lyme. My Lyme Dr did give me the name of a Lyme Neurologist. I'm just wondering what the smartest way to do this would be.....


To meet with a new Lyme Dr first and have them recommend tests to get by a Neurologist or just go to the Lyme Neurologist first and then meet with the Lyme Dr....


My biggest reason for waiting to go somewhere besides the fact that it's embarrassing and causes a scene is I am soooo sensitive to EMF's and I fear getting these big machines around me and my brain would really trigger things in a BAD way that could crash me even harder. Don't think I have a choice though. The EMF thing though is huge for me. I wear a good EMF protection pendant but even on bad days driving in the car really makes it all worse as well.


The only help I get (and only partial help "sometimes") is from klonopin and Benadryl. They can sometimes really calm this down when it's out of control. If I've pushed the detoxing too much, sometimes they barely help.


Honestly I'm so sensitive, ANY pill or supplement can set off my symptoms. I've literally taken Magnesium before and have gone into a bigger noise-tremor mode, it's very weird. It almost seems like my body is reacting to the "energy" of everything...or just simply adding something to it. Then other times I'll take something like a mag pill and it calms things down a smidge. Again, it's always changing with me...I've gotten set-off by every pill I own and had times of relief from every pill/supplement I own. I'm so sensitive a lot of the time I can FEEL the energy of a pill/supplement just by holding the bottle. Sounds weird but I'm so overly "in-tune."


It all comes together, I feel all this stuff moving/pulsing/rocking around in my brain, my feet, my spinal cord, my arms, my thighs, I loose strength in my thighs and have to crawl sometimes because I loose strength and some motor functions. My brain shakes and tremors bad. The noises are out of control and I have severe rage episodes, uncontrollable crying, my brain feels so fogged and I just feel "gone". I can feel the noises coming sometimes although they can also be very quick and sudden as well.


And the detoxing and treatments can just make it all come on worse...very often. And my liver is hurting me too while I go thru all this. I'm always thinking it's not true seizures (my LLMD said she feels it's seizure-like activity) but my body trying to move toxins (in a very violent way since it has trouble releasing them).


My Lyme Dr one appointment when it was bad after I did a lot of detoxing (earlier that day) and it kept getting worse from it gave me a Magnesium IV. The whole ride home I made the noises, the mag bag didn't touch it. It seems like anytime I try to detox this stuff just gets even worse.


I wonder if any of this could be mast-cell related or MCS-related.


So do I just contact lyme forum leaders and ask them for an LLMD that's very knowledgeable about the neurological aspects? I thought since lyme is a Neuro-disease that all Lyme Dr's should know about this stuff. You're saying some are better than others when it comes to the extreme Neuro-symptoms like this?


I feel like finding a Lyme Dr who treats with natural antibiotics but understands the neurological stuff will be trying to find a needle in a haystack!!


Thanks again. I understand the computer breaks, this has been very hard trying to type all this out and be on my phone in the shape I'm in.

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carolync
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Lymenotlite - Thanks for the info. I've considered Buhners protocol, just so sensitive and these protocols with multiple products to be on are usually too much for my system. Want to talk to a new LLND when I find one about the various herbal protocols.

Been treating naturally for the past 2 years...no more antibiotics for me. Had too many back in the day for my first bout with Lyme and they were just too harsh on my gut and system overall.

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Keebler
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Are there any specific triggers (either within your body or in the environment / space / surroundings) prior to the vocalizations?

How many seconds would you guess the sound lasts?

How do you feel afterward?
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MannaMe
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For my hubby, the rife machine has been a real blessing. He rifes for several different things.

He has different sets of frequencies programmed in and runs them throughout the day / night. Some are supportive rather than for killing bugs off.

He does an adrenal support, digestive support, one to relax tight muscles, one set for headaches, and he has a babesia set, Lyme and others.

The Lyme frequencies he doesn't use very often. Babesia was his biggest problem. That one he rifed several times a day and felt better almost immediately. Lyme frequencies he did herx with. The supportive one he has no herx.

We have a friend who also has genetic issues along with being very sensitive to everything. She had to try to get each component of the supplements from her genetics doctor and find out which ones were causing problems for her.

My husband is only using 4 supplements from the genetics doctor. Those 4 seems to help some, but didn't make any drastic changes. His doctor has given him others to try adding to it. Most times it didn't work to add more. (He is taking other supplements that we found with trial and error that work for him)

His doc has started letting my hubby try something new before we buy a whole bottle.

He is fairly stable at this time, which we are thankful for, but he/we are hoping & praying for a full recovery someday. He still has a long way to go to be well.

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carolync
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quote:
Originally posted by Keebler:
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Are there any specific triggers (either within your body or in the environment / space / surroundings) prior to the vocalizations?

How many seconds would you guess the sound lasts?

How do you feel afterward?
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Keebler - Nope, it really feels to me like if I've been pushed too hard with detoxing or treatment (which is most of the time), it's all worse all through the day and then yes, ANY noises, stimulation around me can bring it out....


BUT... when I'm in that same usual spot where detoxing/treatment is pushing my body, I can be in a totally quiet house with no one here, even in the middle of the night and be going through hrs of full body and brain torture which includes the noises, gasps, brain jolts.


Then on those rarer occasions where I feel 'closer' to a clearing (which I can never figure out how to stay in), I can be around noises or stimulation or talk to my husband, etc and notice it's not setting me off.


I get Bart marks / streaks everyday appearing on my skin. They come out all the time from taking something to detox or taking something to kill, or sometimes just out of the blue. I notice when they appear on me, these symptoms come out more....my head starts tremoring more, start getting some noises or gasping jolt sounds, get more irritable in my brain and that flip-out feeling, more sensitive to sounds, stimulation, feel stuff moving in my thighs, numbness, tingling and walking can get harder, etc.


I truly believe what I go through must be related to being extremely over-toxic and my body struggling to get rid of the toxins. Or lately after talking here, wondering if I could be having some mast-cell or histamine reaction TO the die-off.


Most of the time my bart marks look like scratches or long streaking but sometimes I also get a "patch" of what I call my bart marks. They come out and last anywhere from 10-20 minutes.


I do go through my waves sometimes without the marks but they are soooo common with me daily. Sometimes they even come out just from swallowing a pill, any pill. Just feels like this crap is "stuck" in me and anything stirs it up.


When I went to the genetic guy and he put me on allthis stuff to get my body to detox better, the marks were out of control...and I got even more extreme....walking got way worse, head tremors waaay worse and bigger, etc.


I'm curious to see if any of this will calm down on this killing/detoxing break.

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carolync
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My first Lyme Dr from 2 years ago told me after my sounds started (6 months into treatment), that he has seen some Bart patients deal with these noises/screaming due to the die-off. He was the only Dr so far to validate it. That's the only explanation I've ever had but who knows.


The noises aren't a separate thing for me, they go along with all my other symptoms when things are just "worse" which unfortunately now is most of the time.

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Brussels
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People here may throw stones on me by saying this, but I'll tell what I think, anyway.

I don't think you are alone in that extreme suffering.

There are many more people in your shoes than you think, they are just too ill to post.

You're not an exception, if that makes you feel better...

In my opinion, this comes from a full toxic liver. Liver exams will not show much.

If your liver - your main detox organ - were working well, you wouldn't have these extreme symptoms.

What made the liver so toxic, 'broken'?

Man made toxins is the number 1 (from a whole life accumulation), vaccines, medicines etc.
They do not come out easily.

Number 2 are chronic and acute pathogen toxins from die off.

Number 3 is nutrient deficiency. Nutrients such as antioxidants /binders have been missing our whole life. Without nutrients, the liver cannot detox properly.

Number 4 is lack of hydrocholoric acid in the stomach. This causes food to go undigested to the gut, creating more toxins, gas, and the liver has to do more work to produce STRONGER bile acids /salts to DIGEST the undigested food. It spends it's precious minerals, nutrients even more due to lack of stomach acids.

Number 5 is bad diet: any diet that is hard to digest, that consumes too much bile, too much hydrochloric acid will NECESSARILY burden the gut and the liver.

If you are the liver and you think: what is a bad diet for you, Liver? Well, a bad diet is high in fats, proteins, even if they are clean.

It takes a lot of effort to digest both fats and proteins, a lot of strong bile, and a lot of strong hydrochloric acid.

It makes both the stomach and the liver burdened because they need to overwork to help your body digest these hard-to-digest foods.

The moment you stop consuming these stuff, of course you'll go through detoxing-mode. It's inevitable. You'll feel your liver stinging, you get detox reactions, it may be uncomfortable.

Consume more and more fats and proteins, the liver stops detoxing because it needs to digest these hard-to-digest stuff.

So more toxins accumulate in the body (that is already full of toxins).

Result is more 'allergy', more undigested food in the gut, more gut problems, more pathogen growth, less detox ability, more liver toxicity (that is already totally full).

I know there are theories telling exactly the opposite.

Until Nov last year (about 6 months ago), I thought my life was in danger because of multiple food allergies, that kept increasing. My daughter was even worse.

We were both sad and afraid one day we wouldn't be able to eat anything else due to burning mouth, tongue, tummy ache, skin reactions...

I decided to try low fat, low protein, lots of fruits, lots of veggies, no soy, no corn, no GMO, no egg, no dairy (zero!), no gluten (we had been on no gluten for years anyway).

Fast forward to March-April: I don't think I have any allergy now anymore. My daughter is eating almost everything again (except for the NO list above).

it's been more than 5 years we could not touch an apple without having our mouth like burnt. Now, we're both eating apples daily WITH skin!

We're eating all fruits without any problem. The only big thing we did in December last year was to change our diets to low fat, low protein, high fruit, high vegetable and cut dairy / egg.

I feel finally safe concerning food allergies. I no longer have lyme (for exactly 10 years) but still, this allergy thing have plagued us for so long. My daughter had problems since her birth, with or without lyme.

My husband was the best of us, allergy wise. He could eat almost everything without many problems (except eczema).

Now, I have to say, we can each MANY more things than he can (we can even eat tomatoes, oranges, pineapples, all berries, etc) while he can't touch many fruits.

He never followed our diet, but is now considering it.

His food allergies only keep increasing, with the passing of the years. He loves animal protein, butter, olive oil, cheese, gluten and never really stopped eating them.

He also loves salad, and has been eating that almost daily (big salad bowl) for many years too. He loves carrots and fruits too, but he never stopped eating high fat, high animal protein.

He still suffers daily from eczema, and cannot touch any orange, tomato, even broccoli can cause him a bad allergic reaction.

After a certain age and toxic accumulation, even people without lyme will suffer from a toxic liver as in our case.

I now have no doubt that my food allergies came from bad eating habits. And my daughter's allergies too. The only proof is that we are finally out of danger with barely any allergy anymore.

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Keebler
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carolyn,

The Dr. Terry Wahls protocol for nutrition is very good, excellent, in fact. I suggest to stay with that for now just don't add in any kind of intermittent fasting. If you can go 12-14 hours from dinner to your breakfast - comfortably - that should be fine.

As Dr. Wahls explains in her book (which I hope you have, though do see all her recent lectures, too) . . . animal protein and animal fats, along with olive oil, etc. are important to the myelin sheath support and repair which you really need right5 now.

Also her range of protein, fats, and veggies are vital to help feed and repair the mitochondria.

This is not a high protein diet but an wise amount she suggests. Same with the fats. And, with the 7 -9 cups of mostly veggies, a few berries now and then, that's very high for a reason.

Still, it's important that you do go over the produce you consume for the OXALATE content and the LECTIN content and select veggies that are low in those.

Magnesium Citrate can also help mitigate oxalates, though I don't think lectins.

As what you describe with what I do call seizure activity with the screams, they are very similar to the kinds of seizure screams I've dealt with as part of the mix. My body often goes further than a scream

but it sounds like sound or sensory startles also trigger the scream for you. The slightest sounds or movement around me have done that, too.

The inner ear is also involved and I suspect that the klonipin might not be helping you much because it is toxic to the ears / inner ear and klonipin made all that worse for me.

"Detoxing" also made me much worse. I am so glad I left that in the past and rely on my own liver / kidneys to help me out as long as I support them.

I have been on ketogenic diet for nearly a year now and I can't recall the last time I had a startle scream (as with the phone might ring - though I have spazzed out a bit now and then - over all better in some ways with that).

I do not suggest that you embark on a ketogenic diet, now, as you mentioned you were considering. that might be something to study about but I think you need to be in a much steadier place before going that extreme.

The Wahls protocol seems a very wise choice for now, basically with a few tweaks.

Again, what I call "seizures" might not at all register on an EEG but they sure did on 3 different QEEGs from 3 different doctors. Any doctor who does that NEUROFEEDBACK I mentioned will do QEEG. It's a far better kind of EEG but most neurologists will poo-pooh it. Detail:

https://www.siberimaging.com/about

Siber Imaging
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Keebler
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MannaMe's posts about how very helpful RIFE treatment has been for her husband is important. See links set below.

Rife has helped many people.

It may well be the safest and most effective treatment method for those who are so very sensitive (and beyond) to either Rx or certain herbs / supplements.

Some support supplements might be important, still, low and slow. Please do not do anything that makes you feel worse.

Rife would be low and slow, too, especially at first with lyme, though other infections can be treated in the times in between working on lyme.

Cost wise, it's also more economical than most LLMDs, though it would be nice to have a LLMD / LL ND to help guide you.

Any doctor who pushes you to fast for too long for your comfort

or "detox" harshly is one I would run, run, run away from. Been there, done that. Damage ensued.

Toning down your effects can actually be a winning ticket.

Take care. Tender loving care.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS SET
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carolync
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quote:
Originally posted by Brussels:
People here may throw stones on me by saying this, but I'll tell what I think, anyway.

I don't think you are alone in that extreme suffering.

There are many more people in your shoes than you think, they are just too ill to post.

You're not an exception, if that makes you feel better...

In my opinion, this comes from a full toxic liver. Liver exams will not show much.

If your liver - your main detox organ - were working well, you wouldn't have these extreme symptoms.

Brussels, I can't thank you enough for the reassurance. I have ALWAYS felt like I'm the only one going through all of this extreme extreme stuff. It does help me soooooo much to hear I'm not alone. I guess I'm the only crazy one who sits here in agony hunched over my phone trying to post with it. I can really only handle being on here when medicated (ugh)


It just blew me away that even my Lyme Dr with a good reputation and 20+ years of experience told me she's never ever seen anyone this bad. I would really like to understand why....maybe other people in my situation with the extreme noises, etc just refuse to go to the Dr. Wish I knew because she really made me feel like I was the only case like this ever.


Then never seeing posts about screaming or people making loud noises ALOT made me feel even worse so thank you.


I know know KNOW in my heart that you are hitting the nail on the head with the liver theory. This makes the most sense with what I've experienced these last 2 years. Everything brings out liver pain, doing a simple castor oil pack last year and loosing the ability to tolerate treatment or any form of detoxing after that...turning yellow from that and so many other hard-core crashes that wiped me out completely for months and turned me yellow whenever I tried something to move toxins too much.


It makes total sense...if my liver was working properly i would not be crashing so hard like this ALL the time. I've been treating and trying to detox for 2 years and I think there is such a huge buildup between all of that and the last 20 years of chronic Lyme, medications, environmental toxins, etc, etc.


Thank you for your thoughts on diet, I will ponder all of this. The thing that absolutely SUCKS..... I want to ease the burden on my liver as much as possible but I unfortunately NEED klonopin and Benadryl in these extreme waves daily when it's pure torture to just be alive. I'm praying that with a longer treatment break and detoxing break maybe that will ease some burden on my liver, bring me enough relief to where I wouldn't need the meds as much. But man what I wouldn't give to just stop them completely since I know they're toxic.


It's just unreal when you're going thru this torture and your Dr tells you your liver enzymes are fine. She's always telling me the pain I get is from it working on the toxins which I'm sure is true. I just need a break from pushing my body and hopefully between that and diet and easing up (when I can) on the meds my liver can catch up a bit.


I wish there was something else I could do for it besides a little castor oil rub. Have to wait on adding the Dandelion tea back because even that is too harsh right now. I like doing gentle yin yoga on the floor which I know can help the liver meridian, I even think I get some detox reactions from that sometimes because I'm so very toxic. My Lyme Dr said yoga can release more toxins.


The other day I was finally able to jiggle lightly on my trampoline but I have read that even that can burden your liver more since you're moving toxins out of the lymph system. Not sure if I should do that with this backed up liver issue. Sometimes I feel worse for a few minutes after using the trampoline I'm sure just because it's moving things.

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carolync
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Keebler - will respond when I can, need a phone break and some rest. Thank you! Really feels like a fresh new perspective to ditch the "detoxing" mindset and baby my liver instead. Hope this will eventually all work out for me. Some relief would be a dream come true.


Will write more later.

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Keebler
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Carolyn,

you do not need to reply. Your above note is adequate. No need to take the time / effort to do more. KISS - keep is simple, Sweetie.

you have many links in the replies above for your study guide.

Also, be sure not to sleep with your cell phone in your bedroom. This matters - a lot - a whole lot.

When you rest, keep it far from your body. Try to keep it far from you as much as possible. If you have a laptop or desk computer, best to use those - if possible.

Keep all electronics out of your bedroom, though. Or if TV, unplug it before bed and when resting.

Take care. KISS - keep it simple, Sweetie.
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carolync
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Thanks for understanding Keebler. Keeping it simple sounds good.


Oh yes...I keep my phone out of the bedroom and turn it on airplane mode anyway at night in the house. We turn our wifi off at night for me, I'm SUPER sensitive to EMF's even my laptop...I have all kinds of protective gear to keep the vibes down on my laptop, wear protective grounded gloves, etc.


Through some of these few-month-long crashes in the past couple years when I'm REALLY bad and overly-disabled I haven't been able to touch my computer or phone for months...had my mom taking care of all my work emails, etc. Got a stylus recently so I can "touch" my phone here and there.


Just got a new pendant that supposedly keeps like 95% of the radiation/EMF's away from me. Wear that around the clock now.


Just curious... what other gentle ways have you supported your liver when you decided to switch from "detoxing" to just gentle liver support?


My genetic guy gave me a supplement called Antronex when he suspected my liver is having trouble, i think it's some bovine liver fat extract. He said it will gently 'support' your liver and in the past I did feel clearer after taking it sometimes but I suspect it might also throw me into more "detoxing" when I'm in these more fragile spots. Might try adding it back again after this long break from things....


It's the only thing else I can think of for my future "liver support plans" other than a castor oil rub here & there and some dandelion root tea. Any other ideas? I'd like to rotate things in the future when I get back to a couple supportive supplements for my liver.

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Keebler
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Bovine or porcine glandulars made me much worse. Too stimulating for me. I tried many different kinds of Standard Process formulas and just could not tolerate any with glandular / animal ingredients.

Although I do fine with NatureThroid / WP thyroid which is porcine thyroid glandular my ND supplies to me. Amour is really hard for me, though - never again - though some do better with that. It's an individual thing.

And the synthetic pharmaceutical thyroid Rx were terrible for me.


Milk Thistle is the most basic liver support. Dandelion is said by some to be a bit easier.

[This is not just regarding you / your posts.] In general, I hate to talk about all I've done as it's just exhausting.

I do not do well with long explanations or conversation dialogue usually. I speak in LINKS SETS. So when I post links, you can usually find the answers in a links set.

The key is not to pile everything on at once, too. One thing at a time. Lots of study goes before any decision, though.

Be sure to get books about lyme / coinfections by Stephen H. Buhner, a very much LL master herbalist.

and check out ILADS website for books by LLMDs. The "How to find a LL ND" thread also has books, etc. Always check for any newer editions or works, though as I don't keep my links set always up to date. Just search the author's name, etc.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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Keebler
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Check out all the tabs here - and doctor referrals, too, for both organizations: .

www.ilads.org

ILADS


www.lymedisease.org

Lyme Disease.org


https://www.lymedisease.org/lymesci-jhu-persistent-lyme/

LYME SCI: Seeking better treatments for persistent Lyme disease

April 2019

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MannaMe
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I'm wondering if charcoal would be a good binder that doesn't otherwise cause 'detoxing'?

My husband uses charcoal & pysllium husk as a binder. He sets them out so when he wakes to go to the bathroom, he can just swallow his capsules and go right back to bed.

Taking it during the bight avoids binding any of the good stuff / meds he takes during the day.

Another thing, he's working at weaning off his anti anxiety medication. The withdrawal symptoms can be really awful. He found using cbd oil (NO THC) has been really, really helpful.

So keep that in mind for when you try getting off the klonopin.

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Brussels
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Carolyn, sorry for late response.

Yellow color = bilirubin.

How can doctors say your liver is fine if it can't even detox dead red blood cells? Same as for a friend of mine: ended up yellow-green, his eyes were so yellow, poor man.

A couple of days in hospital, the doctor tells him his liver is fine again. Tests went fine in a couple of days, how can this be possible?

I guess, we can't rely on tests....

Every person with hyper sensibility is a liver sufferer, has a burdened liver that accumulated problems since birth (even before birth, as it gets charged with the mother's toxins).

How can a couple of days, a couple of medicines / herbs / treatments deal with a life long liver problem?

Just think how many people with lyme (or other diseases) suffer from multiple allergies, extreme sensitivities, electrosmog sensitivities etc?

Many.

Think of how many people go to doctors, like you, and they tell them they have NEVER seen someone react the way you do.

Same for me. Same for my daughter. How can you react with one capsule of zinc per week in the way you do? 'I never heard about that.' Practitioners with DECADES of experience, never heard that.

This friend that got yellow is exactly the same: he's been to dozens of practitioners, they tell him the same thing: I've never seen people react like you.

I tested him energetically, he's ABSOLUTELY telling the truth, as his body practically can accept next to nothing (food-wise). A small smell of gas/ petrol can cause him a chain of bad reactions such as awful migraines, neuro problems...

I heard that so many times, that practitioners are lost, that they never heard patients like this or that.

You are certainly not alone.

Now what to do?

I don't have the whole answers either. I'm still treating myself. Fortunately all my food allergies disappeared, I think. This is for me a good sign, that I'm going somewhere ELSE than falling in a hole.

Another hint I'm going right: the last 10 years after lyme went dormant, I kept loosing weight, slowly but SURELY. I could not gain any gram, nothing, only I could keep losing weight.

Guess what? I'm almost back to my pre-lyme weight now. Only 6 months in this diet of high fruits, high veggies, high hydration, LOW FAT, LOW PROTEIN, no gluten, no eggs, no dairy, no GMO, no corn, no soya.

I can only tell you this has been a very big surprise to me. I'm still with digestive problems, but the fact that things are turning to the good side is giving me hopes I can live longer again (which was not the case until October last year).

If I kept losing weight DESPITE eating the way I was eating, I don't think I would survive more 10 years (as I was already super thin).

I think liposomal Vitamin C helped me a lot initially. I'm still on it. Then diet was the KEY changing point for me.

I don't even consider myself electro-hyper-sensitive like I have been for more than a decade!

Even that seems to be disappearing.

Since lyme, I could not sleep in one bedroom, it made me feel so sick there. It's been about 10 years I can't sleep there. Now I'm back there.

Give your liver a break. Lots of lemon, celery juice (start slow with that), cucumber juice, mango, sweet fruits, raw food (if you can). Lots of good water, coconut water.

My policy is no oil or as little as possible. Where do cows and any herbivores get their oils? From greens!

I know I'm not the majority here (as most are keto-paleo, high in fats and proteins), but sincerely, high fat and high protein is not what the liver wants.

Nor your stomach.

The best book I read in the last years is Liver Rescue. Anthony explains exactly what the liver does, how it does, how it gets blocked, how to unblock it, how to nourish it etc.

The preface is written by a medical doctor, who thanked him, because she got a better understanding of the functioning of the liver.

No MD would write a preface and stain his/her name in a book giving medical advice, if there were too many mistakes there.

Just taking the right amount of good water, lemon juice, apple juice, celery juice or even cucumber can be a great start.

My friend who was yellow did not want to follow the diet, but now is having no more option, unfortunately. He's getting problem after another, headaches, nerve pains, muscle pains, joint pains, all sorts of painful rash on his skin, problems to sleep....

I told him to try, let's see if he'll get better. His liver is perfect according to medical doctors. He's still super sensitive to foods, but working on that slowly.

I hope this gives you some hope, Carolyn.

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SSB
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I agree, you are just recirculating the toxins, you are not eliminating them (think of a snow globe). Also, if your treatment is making you herx continuously, maybe your protocol is too tough for your body right now.

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SSB

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terv
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Alka seltzer gold works great for both my son and myself. He will even ask for it..

Need the "gold". I get it on amazon.

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lightfoot
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Three gentle at home detox methods to consider: coffee enemas, oil pulling and far infra red sauna.

So sorry for your situation. Don't give up!! Hang in there!

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Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

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daisys
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I am a long ways from reading this entire thread, but did want to comment.

I have 2 blockages in my detox system. One is in the methylation part, and I take Methyl Guard for it.

The other is in the sulfuric part. The only thing I know about that is if I get a glutithione push, they put in a tiny amount of molybdenum.

What happens to me is toxins are collected into fat cells, which is what's supposed to happen. But the fat cells are not escorted into the intestines. So, I look very pregnant, and if I do anything to detox, it just adds to it.

Years ago, I was on cholestryamine twice and really lost all the fat to the point of being underweight. Now, when I try that on an empty stomach, it does nothing. Many of the protocols mentioned in this thread I have tried.

I got a rife machine recently, and am trying to find out what frequency would help with detox.

So, I just want you to know, you're not the only one wondering how to successfully detox. I will continue to read this thread, and try what I haven't tried yet. Hopefully, I'll have some good news to report back here with.

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LisaK
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I started getting (more) better after I started the infra red sauna. I have only gone a few times- 1 hour each visit- and I can tell a marked difference in my toxicity.

I believe that and at the same time I started a better diet (getting rid of oxcalates) and using Biocidin. ALSO, at the same time I have ramped up my home-made MOLD BUSTER, which is a crock pot in the basement filled with water and a large amount of tea tree oil.

That crock pot has really helped with our house mold.

I see yo ulive in NJ? I am in PA. I am giong to PM you about your dr.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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carolync
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Thanks everyone for the encouragement and replies. Doing my best to believe in a new Lyme Dr, that she can help me crack this code. The idea of getting relief would’ve amazing.


Still waiting for my first in-person appointment. I KNOW there is something, probably multiple things affecting my detoxing...maybe mold, genetics, etc. New Dr is looking into all that but she is suspecting MCAS as a possible reason I can barely handle any treatment, detoxing, supplements, etc. She said she’s worked with people like me before and she was able to help them treat and heal.


We will see how that goes when I begin working on that with her later in the summer. I have found a few others online that had violent herxing and could not tolerate anything and had to give up treating and then learned MCAS was one reason. Sooo...hoping it could be ‘part’ of my puzzle.

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LSG Scott
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this time of year a hot attic is a great free way to detox

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LSG Scott

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Lymetoo
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Carol .. I rarely did any detoxing either. I suspect it is because I also have MCAS.

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--Lymetutu--
Opinions, not medical advice!

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carolync
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Anyone else discover their incredibly horrible time detoxing was due to MCAS?
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