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Omg...i Might Be On To Something

Rachel--24

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aprilh Apprentice
aprilh
Posted
I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??

Rachel, what exactly is alinina (?) the parasite remedy you will be taking. Is it homeopathic, prescription?? Sorry if this is a repetitive question, I just skimmed over a lot of the posts so maybe you posted about this already.

Julie,

I read something in Dr. Buhner's book about LYme and it made me think of you. If you are interested I will post. It had to do with the Anaphylaxis you talked about the other day. I am having a brainless moment so I can't remember the exact wording you used, but he mentioned that in the book. And the herb Andrographis that he recommends for lyme is supposed to help this type of anaphylaxis.

I can post more later if you would like. You may have heard of this already or read about it, but I thought I would throw that out there just in case :).

April

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Green12 Enthusiast
Green12
Posted
Julie,

I read something in Dr. Buhner's book about LYme and it made me think of you. If you are interested I will post. It had to do with the Anaphylaxis you talked about the other day. I am having a brainless moment so I can't remember the exact wording you used, but he mentioned that in the book. And the herb Andrographis that he recommends for lyme is supposed to help this type of anaphylaxis.

I can post more later if you would like. You may have heard of this already or read about it, but I thought I would throw that out there just in case :).

April

Yes, yes, yes April I am interested in this info!!!!

I have been researching the last 3 or 4 years, and more recently trying to find if there was a connection to lyme, a connection to anything, but haven't had much luck. And the people I have been dealing with...

as Rachel would say, MORONS :rolleyes:

Nobody knows what is happening with me!

Do you mean the name of the condition, angioedema, or something else I mentioned??

Thanks so much April.

CarlaB Enthusiast
CarlaB
Posted
Apparently, there are a couple of LLMDs in the area. Problem is finding a good one. Any ideas how to scope out one of these docs? The last thing I need is another added to an already too-long list of bad ones.

I've only heard of one LLMD in PA .... I'd post on Lymenet for recommendations on which is best over there.

You sounds just like the rest of us, LOL, we've all been there!!

I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??
I think a laxative is a good idea if you need it.

Carla,

I completely forgot that. I have a call into the LLMD now, but we have to leave momentarily for the Naturopath's. Hopefully they won't call back during the 4 hours we're going to be away. The steroid I'm on is aerosol, so it's only supposed to affect my stomach and esophagus. :huh:

Steroids are a BIG no-no for Lyme .... even if it "only" affects your stomach and esophagus .... I'd bet your digestive issues are actually caused by the Lyme .... the steroids may make them feel better, but they are only making the Lyme worse. DEFINITELY ask your LLMD BEFORE you take any more!!!

Green12 Enthusiast
Green12
Posted

Sherry I came across the following:

Some of the Chinese herbs that have anti-spirochete action are: Smilax, Oldenlandia, Artemesia, Andrographis, Japanese Pokeweed(Poygonum cuspaditum)
happygirl Collaborator
happygirl
Posted

Alinia is a prescription.

Nyxie63 Apprentice
Nyxie63
Posted

Thanks for pointing me to lymenet! I posted over there and hope to hear back from folks soon.

Btw, how in the everlovin' world do you guys afford some of these treatments? I'm just boggled at all this stuff you're doing (in a good way). I hope you don't mind my asking. I think the reason I've been getting crappy drs is because I've been relying on the insurance company to pay for things and I'm beginning to find out that the best health care practitioners don't take ins.

aprilh Apprentice
aprilh
Posted
Sherry, thanks for your thoughts. I have a chronic form of angioedema (the disease rather than the condition/situational) and have had since around the time I first started getting sick. I get an outbreak pretty much every month, and it coincides with the hormaonal cycle (drop in estrogen/progesterone)

Julie,

I think I am going crazy here but I could have sworn you were the one that mentioned they had "Passive Cutaneous Anaphylaxis" aka PCA. Was that someone else? I searched and searched througout the posts and could not find this reference.

Andrographis herb is anti PCA and has repeatedly shown mast-cell stabilizing.

Andrographis is perhaps the best primary herb to use in the treatment of lyme disease. It is antispirochetal, enhances immune function, protects the heart muscle, is anti-inflammatory (helping with arthritic symptoms), crosses the blood brain barrier where it is active as both antispirochetal and calming agent, enhances liver function and protects the liver, helping clear infection from the body.

Since it has show significant effects against inflammation-mediated neurodegeneration in the brain it is essential to use in lyme disease. It easily crosses the blood/brain barrier and accumulates in significant quantities in central nervous system tissues - brain, spinal cord, and cerebral spinal fluid

.

Julie, I will keep on the lookout for any reference to angioedema. There are some references to edema but not that one specifically.

Sorry!

April

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mftnchn Explorer
mftnchn
Posted
I sometimes get nauseous from ginger. I've heard it's good for a lot of things...I bought some to take on my first cruise because I had heard it was good for sea sickness. I took a little the first day even though I wasn't feeling sea sick...after I took it I started feeling nauseated, lol. Don't know about the other properties though...someone in choir once told me that ginger tea was good for the throat. Don't know how reliable that is though.

Thanks for the info, Donna on the bioset, asyra, art, etc. I am getting a much better picture of it all, and I think I had a simplified form of the bioset it sounds like. I think it is worth trying this approach, especially as all of you have benefited.

The Chinese use ginger for colds/cough. Boil a number of slices of ginger in water with rock sugar, then sip that. Also I boiled ginger and used it for nausea when I was battling h pylori and didn't know it. It was quite helpful actually. I didn't make that sweet, I can't remember if we put rock sugar in it, maybe just a tad.

Sherry, I'll email you copies of T's first ASYRA so you can look at it.

Thanks I got that, I can't open all the files though. I think I get the general idea though. The info was very helpful. I am not familiar with homeopathic approaches very much though I am respectful, just ignorant. So I don't follow all of this easily but am willing to learn.

I got my Humaworm without psyllium and cascara sagrada, I am allergic to psyllium and it binds me up and I'm not a fan of cascara sagrada, but I am thinking I need to be on some sort of "laxative" while I take it. I'm wondering if I drank senna leaf tea every other day if that would be effective enough...anyone have any thoughts on this??

The psyllium is a fiber/bulking agent and the humaworm already contains senna I believe. I think the senna tea would be okay, I think you want to make sure you are eliminating well. The psyllium would help to "scrub" the sides of the intestine to get all the bugs and residue loosened and eliminated. So I wonder if you push whatever fiber you can take? I take phameceutical grade cellulose which I get from my doctor (should also be available at compounding pharmacies.) Probably you know what fiber you could take.

Sherry I came across the following:

Thanks, I'll check those out. I am already on two of them I believe.

Nyxie63 Apprentice
Nyxie63
Posted

Got a reply from lymenet already! Have the names of 3 docs within an hour's drive of me. Will be calling tomorrow to see about an appt.

Thanks again! :)

mftnchn Explorer
mftnchn
Posted

"Some of the Chinese herbs that have anti-spirochete action are: Smilax, Oldenlandia, Artemesia, Andrographis, Japanese Pokeweed(Poygonum cuspaditum)"

Julie, I have looked here for andrographis and can't find it, which is strange I think. I am taking polygonum cuspadium which is also known as resveratrol and Japanese knotwood, and taking samento. So I am taking two of the core protocal herbs in the Buhner approach. I see that the artemesia is good for babesia. Can't find that much info about oldenlandia. The smilax is supposed to be really helpful to bind endotoxins with herxes. That makes me interested!

AndreaB Contributor
AndreaB
Posted

Nyxie,

We charged everything. :(

We don't have good insurance....actually hubby and I canceled ours. We have state assisted insurance. If we had better insurance some of what we had done may have been covered, but probably not much.

confusedks Enthusiast
confusedks
Posted

Well, I do have some good news...my body likes my semi-liquid diet! LOL!!! I have been drinking smoothies all day along with some fudge and my body seems to like it! YAY! I don't know how long I can not eat real food though...we'll have to see.

I had an iron IV today and I was really worried the Dr. was going to come in and ask about the LLMD appt. but he didn't! YAYY! I will have to tell him sooner or later, but for now everything went well!

Kassandra

AndreaB Contributor
AndreaB
Posted

Good news Kassandra! :D

AndreaB Contributor
AndreaB
Posted

Sherry,

I sent a pm, in case you didn't get notification.

CarlaB Enthusiast
CarlaB
Posted
Got a reply from lymenet already! Have the names of 3 docs within an hour's drive of me. Will be calling tomorrow to see about an appt.

Thanks again! :)

Wow! Aren't you lucky! I have to fly to NY to see one!!!

Well, I do have some good news...my body likes my semi-liquid diet! LOL!!! I have been drinking smoothies all day along with some fudge and my body seems to like it! YAY! I don't know how long I can not eat real food though...we'll have to see.

I had an iron IV today and I was really worried the Dr. was going to come in and ask about the LLMD appt. but he didn't! YAYY! I will have to tell him sooner or later, but for now everything went well!

Kassandra

This is great news! This is all that would sit well with me for months .... I ate my first real meal about 2 or 3, then ate again at dinnertime. I put it off so long because I would feel bad after I ate ....

Actually, other than a lack of variety, it seems like the fudge/smoothies provide some balance .... it has protein, fat, and carbs ....

ShadowSwallow Newbie
ShadowSwallow
Posted

Carla,

The LLMD's office called back when we were away. This is so frustrating. I can't go off of it, because the strictures won't heal, and will only become worse because of the stretching (and this is the only way to treat EE, before going on an elemental diet, etc). On the other hand there's the lyme... :blink: I'm also back to the point where Mom's starting to say again that we need to hold off treating the lyme until my intestines are healed. :rolleyes:

Body, I would've loved to not have diseases where the only treatment options are contraindicated. :angry:

Everyone,

Rachelville was right. :P Heavy metals are now finally showing up, after 3 weeks detoxing. I have mercury (.4) and cadmium (.08) high (she uses a hair analysis sheet to muscle test on), along with some other trace minerals. My sister's even worse, with just about every one very high (mercury, lead, cadmium, aluminum, etc). :( I'd think that my sister's levels at least would call for some chelation, but the naturopath is insistent that it's not needed. I'm becoming more than slightly annoyed with her. She's knowledgeable, but only in a very limited capacity. In several subjects (Celiac, Lyme) I know more than she does.

AndreaB Contributor
AndreaB
Posted
I'm becoming more than slightly annoyed with her. She's knowledgeable, but only in a very limited capacity. In several subjects (Celiac, Lyme) I know more than she does.

I'd have a urine challenge done by someone who treats mercury toxicity. If the hair analysis is high it would mean that you are excreting it, but you need the challenge for a more complete picture.

miamia Rookie
miamia
Posted

Carla-

did you ever take levaquin?

ShadowSwallow Newbie
ShadowSwallow
Posted

Andrea,

Mom already wants to go to our allergist, Dr. K, to discuss lyme with him (why, I don't know), but he is very knowledgeable about metal toxicity, so it would be nice to discuss that with him. Mom's said that she doesn't want to "jump from doctor to doctor" with our problems, but I'm really not comfortable with the care we'd receive from this doctor. Ok, I'm done thinking out loud, now! :lol:

Mia,

I believe Carla just stopped taking Levaquin.

CarlaB Enthusiast
CarlaB
Posted
Carla-

did you ever take levaquin?

Yes, Birdy is right, I just got off Levaquin. It was a GREAT drug for me! I made great strides on it. It's obvious from that that Bartonella was a huge player in all this for me.

confusedks Enthusiast
confusedks
Posted

More good news...my Nystatin is on its way! YAY!

Carla, yes, I agree with you! It's a pretty good balance of everything really...and my green smoothies have greens and fruits in them, so it's all good!

Kassandra

confusedks Enthusiast
confusedks
Posted

Carla,

How much Theralac do you take in a day? It says on their site that 30 pills lasts for 10 weeks... :blink:

Kassandra

CarlaB Enthusiast
CarlaB
Posted
Carla,

How much Theralac do you take in a day? It says on their site that 30 pills lasts for 10 weeks... :blink:

Kassandra

My LLMD has me taking one per day.

I think that it's meant to be taken weekly or something like that .... but my LLMD wants me on it daily because of the abx.

Nyxie63 Apprentice
Nyxie63
Posted
We charged everything. :(

I'm afraid that's what we're going to have to do. Either that or tap into hubby's 401K. We're going to have to tap it anyway - found out the roof leaks during the ice/sleet/freezing rain storm we had this past weekend. Ugh! Mold anyone? Could explain some of my problems as well as hubby's chronic itching. And since I'm the only one who can fit up into the crawlspace, guess who's going to have to check out the damage?

Wow! Aren't you lucky! I have to fly to NY to see one!!!

It shocked the heck outta me. Thought I'd have to travel a LOT further. Of course, I don't actually expect to get in to see him until late spring/early summer.

Was thinking earlier today that it might actually be nice to shed all the docs I have now and have someone with fresh eyes (and opinions) take a look-see. I'm hoping this is a sign that I'm finally going to be getting some answers.

Green12 Enthusiast
Green12
Posted

Thanks Laura :)

April, darn. No, that wasn't me. BUT angioedema is anaphylactic in nature so there still could be a connection. Thanks for the info anyway, it gave me an idea on something more to investigate.

Birdy, your mom has a point. But on the other side of the coin, if you wait until your gut to heal you may never get anything accomplished, or at a much slower rate. Sometimes some of these things are keeping the gut from healing, just another perspective anyway.

Kass, glad the new food plan is so far so good. How is the bloating?

Was thinking earlier today that it might actually be nice to shed all the docs I have now and have someone with fresh eyes (and opinions) take a look-see. I'm hoping this is a sign that I'm finally going to be getting some answers.

That's a good idea Nyxie.

I pay out of pocket :( I don't have insurance but even if I did most of it probably wouldn't be covered. BUT, some of the clinics and practitioners have been really good about working with me, offering a break and/or payment plans.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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