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A thread to discuss lyme disease*  This thread currently has 176,239 views. Print Print Thread
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nowishow
Thursday, February 23, 2012, 11:02pm Report to Moderator Report to Moderator

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Quoted from ABJoe

I think this was too large a dose to start with.  I also don't like to take 1 B vitamin by itself.  This reaction seems a bit harsh to repeat...

I am much more comfortable starting with a small amount of Nutritional Yeast and working up in dosage to obtain the desired effect.  With the NY, your body has various B vits available and can use what it needs and flush the rest...


I also take a B complex vitamin as well. But because of the Lyme disease my doctor has put me on separate B vitamins as well. We (Lymies) seem to need so much more than the average person.


"Anxiety is the gap between now and then"

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Spring
Thursday, February 23, 2012, 11:41pm Report to Moderator Report to Moderator

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Quoted from nowishow


I was told by my doctor to start out on 500 mg and work my way up to 2000mg. It's a theraputic dose not a regular supplemental dose.


I would consider your doctor wrong about your dosage and for many other people as well for a beginning dosage. I never pay any attention to the recommendations of ordinary medical doctors about medication dosages unless it is an antibiotic. I have reacted to many things in the past that made life too miserable for a while not to be careful about what and how much of anything I put in my body. There is a reason why many doctors never want their patients to know the side effects of various drugs!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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ABJoe
Friday, February 24, 2012, 12:09am Report to Moderator Report to Moderator

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Quoted from nowishow
I also take a B complex vitamin as well. But because of the Lyme disease my doctor has put me on separate B vitamins as well. We (Lymies) seem to need so much more than the average person.

Sorry, I didn't realize this was a therapeutic dose recommended by the Dr.  It is possible he meant for it to kick the stuffing out of something and in order for it to do the job, it needed to feel like this...  

I would def. consult with the Dr. about the symptoms and see what the word is...


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Spring
Friday, February 24, 2012, 6:08am Report to Moderator Report to Moderator

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Quoted from nowishow
I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.
Connie

Your reaction was worse than any I ever heard of to niacin! I am pretty sure that a lot of people would have gone to the ER with such symptoms. I think people with Lyme's Disease have been through so much that they just sort of expect things to be worse than "normal" whatever it is. Is that right? Of course, I react to a lot of things too. I learned when I was pretty young that I had to be careful about what I put into my body or I was going to pay dearly for it. I just wish there was a regimen that could be depended on to fix Lyme's Disease that could be followed by everyone who has it so they could get well without all the guesswork and trial and error - plus all the suffering they go through caused by the "cure!" Reminds me of the Candida cure multiplied about a thousand times!


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Friday, February 24, 2012, 6:11am Report to Moderator Report to Moderator

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No, I hear you on that.  I think pineapple just takes the edge off sometimes.  But it doesn't really make it go away.  I've been trying to eat it about every 3 days or so and I can tell it helps keep me regular, along with I think helping me keep down some inflammation.  But yeah, for what you're going through right now, I'm sure you have to do something stronger.  I know it's frustrating.  I feel for you.  I have pretty much given myself a break on killing things, as I'm feeling better by just eating like crazy and not killing anything right now.  I don't think that will last forever, but my body really needed it I believe.  I'm not looking forward to going on the killing again.  But, all things have their time I guess.


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Victoria
Friday, February 24, 2012, 7:06am Report to Moderator Report to Moderator

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I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.  



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
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Spring
Friday, February 24, 2012, 12:21pm Report to Moderator Report to Moderator

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Quoted from Victoria
I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.  


I LOVE the way Hawthorne makes my heart feel!!! I take two caps of it every day. I didn't just jump right in with it though, as usual. I took one-fourth of a capsule to start with and worked up to the amount I am taking now over a period of weeks. My doctor, who is mostly into writing scripts, even likes the idea of me taking it. I have been taking it over two years now. Glad you mentioned this, Victoria. Maybe it will be a help to Lyme sufferers... I certainly recommend it.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Man am I melting down today.  My world is kind of upside down and I'm wanting to put my fist through wall at times.  Some of it is with foods and we also got a brand new dishwasher and I'm trying to deal with the transition as best I can.  I'm sort of freaking about the smell of the newness of it.  And right now it's running for the second time empty.  After that, I don't know what else to do but just use it and hope for the best.  Hopefully it won't make me sick.  I've gotten to the point where I'm just so concerned about so many things that have to do with food, thinking it might mess with me.  I'm getting better, but it seems like there's always something either new to deal with and overcome, or whatever.  Like I was really hungry today and it seems like so many food things are not working out.  At breakfast all the kiwi I had were not ripe enough, and then at snack I was washing my blackberries and I found a possible moldy one in it.  And then I didn't want to eat any of them because they're all in the same bowl together getting rinsed.  I tried making some spaghetti squash at lunch and I was really looking forward to them.  But when I cut them open they were super duper hard.  And darker than usual.  I should've known because they're about half the size they normally are.  And after an hour in the oven on 375 it still seemed like it needed to cook longer and I had had it.  I made something else but it wasn't as satisfying.  I let those cook longer and put them away for later, but it was really frustrating.  And it seems like most days when one thing goes wrong, it becomes multiple things.  You know?


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Spring
Friday, February 24, 2012, 11:27pm Report to Moderator Report to Moderator

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Yes, I can relate to "everything" going wrong. When something gets between us and food when we are really needing to eat, things can go downhill in a hurry!! I can grab a piece of banana and a little peanut butter to tide me over such hurtles now. But not before SWAMI. No way! A banana hadn't been in this house in YEARS! I'm making up for lost time! Maybe tomorrow will turn out better for you, JJR. I certainly hope so. I have a quirk about getting something new sometimes. Maybe you have the same deal.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Kim
Saturday, February 25, 2012, 1:18am Report to Moderator Report to Moderator

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Quoted from nowishow
I decided to try Niacin (real Niacin, the flushing kind) for the first time last night. It was recommended by someone in another group and my father swears by it.

I bought a bottle of 500mg capsules and took one with dinner. I was of course expecting flushing of the skin and tingling, but I had a much more severe reaction.

1 - I had intense flushing, my skin looked fluorescent, and was pretty painful.

2 - The flushing/tingling was in my head, my upper chest, my arms, and my knees.

3 - My legs broke out in a rash and became swollen.

This lasted about three hours and then I started having a strong (Babesia) herx reaction, I think. This is the kind of reaction I get if I take too high a dose of Artemisinin or A-Bab.

1 - This includes, constriction of my heart (the feeling you get on your finger when a band aid is too tight, my heart feels like this) and severe pain

2 - Racing and strong pulse

3 - Weakness

4 - Intense inching (mostly my upper chest and back)

I had to take several pain pills to ease the pain in my heart and could not go to sleep until 5 AM.

Of course I didn't make it to work today. I just got up a little while ago and my heart is still hurting.

Question - Has anyone else had a response like this? I'm trying to decide if this was a herx response or niacin response. If it's a herx, I believe I should try a much lower dose as I might be killing my Babesia bugs.

Any thoughts? Of course I'll check with my doctor when I see him next month. But if someone has had a similar experience I'd love to hear about it.

Thanks,

Connie


Always start at 100 mg twice a day and build up to the 500 mg. You should always start out slow with the real niacin.  My DH takes it at 500 mg twice a day but he took a couple of weeks to build up to that.  Glad you are alright.
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Kim
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I have been off of the forum for a while.  I try to post on my caring bridge site for those who want to follow someone who is doing antibiotics AND homeopathics.

I had a medi port put in a week ago.  That went okay but the first time the port was accessed the nurse didn't get the Huber needle in correctly and after hooking up to a myers cocktail bag, the fluid went into the surrounding tissues.  I ended up in the ER.

I am on IV Rocephin, Mepron for Babesia (then later we will treat the Bartonella) and azithromycin.  This was the first week I had an appetite and less muscle pain.

I am also using Young Living Oils and they are really helping.
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Quoted from Spring
Yes, I can relate to "everything" going wrong. When something gets between us and food when we are really needing to eat, things can go downhill in a hurry!! I can grab a piece of banana and a little peanut butter to tide me over such hurtles now. But not before SWAMI. No way! A banana hadn't been in this house in YEARS! I'm making up for lost time! Maybe tomorrow will turn out better for you, JJR. I certainly hope so. I have a quirk about getting something new sometimes. Maybe you have the same deal.


Yeah, it's the whole upsetting of the routine thing.  The worry of if my new dishwasher is going to leach new plasticy stuff on my dishes and make me feel ill for a bit.  And the fact that because of that, I'm handwashing lots of dishes and still not able to keep up with all the dishes there are.  I ran the thing twice and now I think I'm just going to have to trust it.  I may rewash  by hand the ones I use for a little while, just to make sure.  But I do that now.  The old dishwasher we had was so old, it didn't smell good either.  So..... It was a darned if you do, darned if you don't type of thing.  But when the balance in the kitchen gets upset, my world sort of gets tough real quick.  Thank you for your comforting thoughts!!!  It's always nice to hear someone else has similar experiences.

Kim, I'm glad to hear there is some progress.  What oils are you using?  I was a "user", hehehehehehe, for over 2 years.  I know that stuff helped me.  I'd use them in the morning and at night and I always felt calmer when doing so.  And I'm pretty sure some of the oils helped kill bad stuff too.  Like thyme and oregano.  And then there is peace and calming for soothing.  Lavender is a nice soothing one.  Weird thing is, right around late summer, I just couldn't do them any more.  Like I needed a break from them too.  I would use a little something and I'd feel really strange.  I do sniff them from time to time and that's enough to help.  I have a whole bunch of them too and they're just sitting there.  I'll have to call the company and ask if the ever go bad.  But I really think they made a very positive impact on my health challenges.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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ABJoe
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Quoted from JJR
The worry of if my new dishwasher is going to leach new plasticy stuff on my dishes and make me feel ill for a bit.

There is NO way that there will be enough residue on any dish to cause you a problem if the initial smell didn't do you in...  Eat beneficials and let the dishwasher do its job...  Sounds great to me...  We don't have room in our kitchen for a dishwasher, so someone has to hand-wash everything...


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Thank you Joe.  That helps me.  I've got it loaded and will run it after lunch today.  The initial smell is pretty stiff.  And it's kind of stinky after running it, since it is hot.  The first load I do I'm doing all glass and metal and not anything plastic, except for a few pyrex container lids.  I figure gunk can't stick to glass and metal too much.  I'm a little concerned about the plastic tupperware.  Of coures most of that is getting old and I should throw it away anyways.  We're trying to transition to mostly glass.  But I still have a few small ones that are plastic.  And then there's the cutting boards that are plastic.  Anyways, I'm trying not to be stupid and anal about it, but it's not easy for me right now.  But I have to just let it go.  

I'm sorry you don't have a dishwasher.  I don't know how I'd manage without one.  We use tons of dishes.  It probably wouldn't be so bad if I just kept a place setting for each person and just wash them up every time.  But then there is the cooking utensils.  The kids seem to want to eat all the time, and me too.  And then there's the different blood types so I sometimes cook things for some that some of us others shouldn't eat so then it creates more mess.  And my wife is a little bit picky too and likes things cooked only certain ways.  It just gets to be a lot of dishes sometimes.


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Spring
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Quoted Text
There is NO way that there will be enough residue on any dish to cause you a problem if the initial smell didn't do you in...


Now, that is a good thought, Joe. One sniff would have probably been enough to knock a person over if they were going to react to the extreme. That is the way I am, anyway. With those things sitting around in stores shut up and not being used, the fumes are bound to build up in there. The more it is used the better I think, too. I have more of a horror of dishwashing detergent than I do anything else. So I run my dishes through again to wash any of that stuff off.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Quoted from JJR


Kim, I'm glad to hear there is some progress.  What oils are you using?  I was a "user", hehehehehehe, for over 2 years.  I know that stuff helped me.  I'd use them in the morning and at night and I always felt calmer when doing so.  And I'm pretty sure some of the oils helped kill bad stuff too.  Like thyme and oregano.  And then there is peace and calming for soothing.  Lavender is a nice soothing one.  Weird thing is, right around late summer, I just couldn't do them any more.  Like I needed a break from them too.  I would use a little something and I'd feel really strange.  I do sniff them from time to time and that's enough to help.  I have a whole bunch of them too and they're just sitting there.  I'll have to call the company and ask if the ever go bad.  But I really think they made a very positive impact on my health challenges.  


The Lavender is helping me sleep.  I am just starting to use a diffuser because that really helps too.  I use Panaway and Valor on my spine at night an no more pain there that wakes me up.  If I can't sleep, it is just my central nervous system still all messed up.  

I use the Peace and calm on the bottoms of my feet.  Panic attacks are lots better.  I have been looking at these oils for a year thinking they were bunk, and now I feel like an idiot because I could have had some relief sooner.

They are using these oils in some hospitals now like Johns Hopkins.  I am still experimenting.  There is a doctor who has put out a list of oils to use for Lyme.  I am going to gather those oils and start using them.  As far as I know only the citrus oils have any kind of shelf life and I don't know how long that is.  Sniffing from the bottle is good too.  What ever works.

In one week of the IV Rocephin though, muscle pain has gotten better.  Now I know there are still going to be some nasty herx days, but I am grateful to not be in constant pain.  That is a miracle for me.  I have to give the oils a lot of credit for that.  I had always planned to combine the antibiotics with the homeopathics and it is helping using them together.  

I still have some bad tremor days.  Those seem to happen when I have to use Flagyl.  I do two weeks on and two weeks off.  That medication breaks up the Lyme cysts and those two weeks are rough.  But if you don't break up the spriochete cysts, nothing either antibiotics or homeopathics can get rid of the bacteria.

The Mepron causes more headaches, but the Peppermint oil mixed with Lavender gets rid of all or most of it so that it is bearable.  Three more months of Mepron and then I am not sure if my Lyme practitioner will continue with that or work on the Bartonella.  

My church is there to support me and my faith has kept me strong most of the time.  I still have a lot of work on eating better.  Lyme has hit me hard in the gut.  I can eat Kale now.  That is a biggie.  I can make soup ahead and toss that in and there are a lot of nutrients in that.  Slowly making progress. Thank God!!

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Quoted Text
Those seem to happen when I have to use Flagyl.

You are so brave. About twenty-five years ago, I tried to take Flagyl for five days, I believe the prescription was for, but on the fourth day I got so sick I could hardly stand up. There was no way I could take that last pill. I wish there was better, more humane help for this dreadful problem.


"We are all born ignorant, but one must work hard to remain stupid." -- Benjamin Franklin
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Quoted from Kim


The Lavender is helping me sleep.  I am just starting to use a diffuser because that really helps too.  I use Panaway and Valor on my spine at night an no more pain there that wakes me up.  If I can't sleep, it is just my central nervous system still all messed up.  

I use the Peace and calm on the bottoms of my feet.  Panic attacks are lots better.  I have been looking at these oils for a year thinking they were bunk, and now I feel like an idiot because I could have had some relief sooner.

They are using these oils in some hospitals now like Johns Hopkins.  I am still experimenting.  There is a doctor who has put out a list of oils to use for Lyme.  I am going to gather those oils and start using them.  As far as I know only the citrus oils have any kind of shelf life and I don't know how long that is.  Sniffing from the bottle is good too.  What ever works.

In one week of the IV Rocephin though, muscle pain has gotten better.  Now I know there are still going to be some nasty herx days, but I am grateful to not be in constant pain.  That is a miracle for me.  I have to give the oils a lot of credit for that.  I had always planned to combine the antibiotics with the homeopathics and it is helping using them together.  

I still have some bad tremor days.  Those seem to happen when I have to use Flagyl.  I do two weeks on and two weeks off.  That medication breaks up the Lyme cysts and those two weeks are rough.  But if you don't break up the spriochete cysts, nothing either antibiotics or homeopathics can get rid of the bacteria.

The Mepron causes more headaches, but the Peppermint oil mixed with Lavender gets rid of all or most of it so that it is bearable.  Three more months of Mepron and then I am not sure if my Lyme practitioner will continue with that or work on the Bartonella.  

My church is there to support me and my faith has kept me strong most of the time.  I still have a lot of work on eating better.  Lyme has hit me hard in the gut.  I can eat Kale now.  That is a biggie.  I can make soup ahead and toss that in and there are a lot of nutrients in that.  Slowly making progress. Thank God!!



I'm interested to see that list.  I have over 20 types that I've collected over the last couple of years.  But I don't have them all.  I have panaway too.  That one is supposed to be good for inflammation.  I have valor too.  Peppermint was always a good one for me.  I used to put that on my liver and kidneys a lot.  My doctors assistant told me there was something really special about peppermint.  She said if you had a bacteria in a petri dish, and you introduced something to kill it, like say, cinnamon.  She said you'd see the cinnamon kill the bacteria and the dead bacteria would be there.  Just like when you kill yeast, there is die off your body has to filter out.  Well she says peppermint is like a miracle killer.  She said, going back to the petri dish, if you put peppermint in with the bacteria, the peppermint will just like eat up the bacteria, and there is no dead portion.  It just makes it like disappear.  I don't know if that's true or not, but I was like DANG, that's cool.

Wintergreen helps with inflammation.  And one oil that I can't explain why but it makes me feel good, is Spikenard.  It has this really weird smell that is unlike anything.  It's like burnt something.  But it just makes me go,  aaaaaaah.  I guess it's very anti bacterial and anti microbial.  And they used it in Jesus time a lot.  I think it was the oil Mary broke and rubbed on his head.  Or wait, was it his feet?  Oh shoot, I should know this.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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I wish to make a combo list of all links here,, (will share it later)  

as long as I am going to do this .. are there other suggestions I might follow that would serve a bigger purpose?

I seem to be in need of a project..haha  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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Quoted from Victoria
I have not heard of this in relation to Lyme treatment, but I was wondering if Hawthorne might help to alleviate the stress on the heart.  


Yes, Hawthorne is great! It's helped keep me out of ER. I've been talking it for 1 1/2 years now. I also added CoQ10 and extra B1 (in the form of Thiamine Tetrahydrofurfuryl Disulfide) which is the biologically-active form. These seem to help alot as well. Because I have bugs and toxins in my heart, I always have a heart reaction when the bugs are killed and toxics and released.   It can't be helped, I guess. I just try to keep my reaction as low as I can.


"Anxiety is the gap between now and then"

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Location: Niagara Peninsula, On
Age: 47
Lyme has been with us for a long time:

http://www.bbc.co.uk/news/science-environment-17191398

Quoted Text
Oetzi the Iceman's nuclear genome gives new insights

Oetzi's full genome has now been reported in Nature Communications.

It reveals that he had brown eyes, "O" blood type, was lactose intolerant, and was predisposed to heart disease.

They also show him to be the first documented case of infection by a Lyme disease bacterium.
Another peice of the puzzle.....


My weight loss goal: 220 lbs.  A 6'4" dyslexic oddball: the size of a line-backer, the silhouette of Winnie-the-Pooh.
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Ribbit
Friday, March 2, 2012, 10:01pm Report to Moderator Report to Moderator

~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
Posts: 8,156
Gender: Female
Location: Atlanta, Georgia
Age: 37
Peppermint tea always made me feel like I was going to throw up.  I wonder if it was killing something off.  Hm.  Maybe I need it.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Victoria
Friday, March 2, 2012, 10:23pm Report to Moderator Report to Moderator

Swami Nomad 56%
Sun Beh Nim
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Peppermint tea gives me heartburn.



Normal day, let me be aware of the treasure you are.
Let me not pass you by in quest
of some rare and perfect tomorrow.
~Mary Jean Irion
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Chloe
Friday, March 2, 2012, 11:07pm Report to Moderator Report to Moderator

42% Teacher Rh+ N1, N1b
Kyosha Nim
Posts: 9,519
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Location: Northeast USA
Age: 72
Quoted from Victoria
Peppermint tea gives me heartburn.


Me too!



"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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Kim
Saturday, March 3, 2012, 8:41pm Report to Moderator Report to Moderator

SWAMI GT3 Teacher, Slight Taster
Ee Dan
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Location: CO
Age: 60
Some people put the peppermint on their tummy and get the same benefits or put it into an empty capsule and swallow it.  Might not have the same affect.  My DH swiped my peppermint and uses on his forehead to help him stay alert.  
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