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Rachel--24

Omg...i Might Be On To Something

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Hi everyone! I'm back! I don't have time to respond to everything, so if I missed something, please ask again. :)

Happy birthday to all the birthday girls!!! :D

Nancy, congratulations on your diagnosis!!!

Here are some questions for all of you:

1) What is Enula?

It's an herbal tincture used in the Cowden protocol for babesia. It helped me a lot with other parasites as well.

2) What is ART?

3) I have tried Natto K by Enzymedica just because it said something about protecting the heart. Do any of you take this and what do you take it for?

4) Because of all of my optical, neurological symptoms, my LLMD wants to eventually move to IV abx. Any advice for me...or can you tell me what I might expect from herx or fatigue or side effects.

5) I am also taking Cat's Claw, Andrographis and Resveratrol and probiotics, zinc, selenium, molybdenum and milk thistle (vit b gives me heart palpitations and I have had mixed reviews with magnesium/calcium. Has any one tried Smilax for Herx? How about Aremisinin for Babesia? How do you feel you did

I have not tried Natto.

Many with neuro symptoms eventually have to do IV. We talked about it at one point with me, but with bart treatment the neuro symptoms went away.

Do add the Artemisia for babs once you adjust to the other meds. Some forms of babs will not go away without it.

Ask your doctor about the milk thistle. I have read it can lower the concentrations of Mepron, but some LLMD's use it anyway.

6) I read that it is not good to take Vit E, ALA or COQ10 with Mepron ( I am on Mepron). What supplements do you recommend?

No CoQ10 with Mepron. I supplement ALA at my LLMD's suggestions. I don't know about Vit. E. I don't have a lot of time right now, but ask me again about supps if I forget to answer.

7) I have a possible mercury filling, do I have to get this removed?

I felt much better getting mine removed. You might have your LLMD do a provoked urine test to see if you're high in metals. If you're not high there may be no point in getting it removed.

I'm really excited for your diagnosis so that you can get better now and get your life back. :)

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I don't think you can do a provoked urine test with fillings in your mouth? :huh:

Rachel might know more about that, but I am pretty sure you would have to do an unprovoked. The provoking substance can pull more metals from the fillings.

Personally, I think getting the fillings replaced with non-metallic ones would be essential to healing. Nothing good can come of those fillings and the burden it puts on the immune system. :)

Hope you had a good trip Carla! B)

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I don't think you can do a provoked urine test with fillings in your mouth? :huh:

Rachel might know more about that, but I am pretty sure you would have to do an unprovoked. The provoking substance can pull more metals from the fillings.

I don't think it's a wise thing to do with fillings either. Didn't Lisa have a challenge with her fillings? She got a high score, in part due to her fillings and if I remember correctly her health suffered even more.

I would think if it had been a safe thing my doctor would have had me do it two years ago when I had my hair analysis done. The gal I see for ART won't do anything til I get them out either, aside from the toxin binder and immune support. She may have done some LED's if I had had the money though.

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Happy 4th of July to everyone in the U.S!

Welcome back Carla! How was your trip?

Sherry, glad the first day of enula went ok. Any alcohol drops I put in a little hot water to burn off the alcohol.

The rice pudding sounds yummy :)

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Happy 4th everyone.

Yesterday i had a small breakdown. I was so depressed about not being able to eat anything today. We have been invited to a few peoples house but im afraid of the cc, so we have decided not to go. I wish i could just let go for one day and eat what i want, but im too afraid of the aftermath. I wish i would of at least gotten the pills so i could of ate something lol.

Carla,

Welcome back.

Kassandra,

Im so jealous on the mac n cheese lol.

DOnna,

Have a great time in vegas, win some money.

paula

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Yesterday i had a small breakdown. I was so depressed about not being able to eat anything today. We have been invited to a few peoples house but im afraid of the cc, so we have decided not to go. I wish i could just let go for one day and eat what i want, but im too afraid of the aftermath. I wish i would of at least gotten the pills so i could of ate something lol.

Sorry about your breakdown Paula :(

Can you prepare your own food and take it with you? That's what I always do because then I can control the ingredients going in.

I hope you figure out something to eat :)

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Many with neuro symptoms eventually have to do IV. We talked about it at one point with me, but with bart treatment the neuro symptoms went away.

Do add the Artemisia for babs once you adjust to the other meds. Some forms of babs will not go away without it.

Ask your doctor about the milk thistle. I have read it can lower the concentrations of Mepron, but some LLMD's use it anyway.

I'm really excited for your diagnosis so that you can get better now and get your life back. :)

Carla-

Thanks for all of your help. I didn't see Dr. H yet, still waiting. It had been gnawing at me that he was far away in case I ever had a Lyme related emergency (my system is very sensitive). I saw a different LLMD in Manhattan, Dr. R. When I called Dr. R's office they didn't have an opening for five weeks. They asked if I know if i have Lyme and told them of all my symptoms, diseases, the receptionist said "Oh boy". They called me two hours later with a cancellation for the next day!!! I will get in to see this LLMD for a second follow up before I have my initial with Dr.H but I am thinking I may still see Dr. H (if I can afford it) for comparison sake and he comes so highly recommended by you.

I liked Dr. R very much and I trust him, but there were things he didn't know--- the herbs specifically. But, I could stay with him and have my naturopath who treats Lyme, cover all the other stuff.

Thanks for telling me about the milk thistle. I didn't know that. I love my milk thistle though.

What is bart? Is that short for bartonella? What did you take for that?

Thanks again, and I am trying to control expectations and not be too hopeful, but I feel a little better already, and I am not on the full dose yet.... Maybe it is in my head, maybe it is the herbs.

Hope you had fun in Miami.

Nancy

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Thanks everyone, I did have fun in Miami. I completely kept up with Adam and had no problems with the heat. One day we rode bikes around town for about 4 hours (with stops to eat, shop, etc.). We did lots of walking. I felt fine the whole time.

Adam is a diamond club member at the Hilton because he always stays at the Hampton Inn when he travels .... Hampton is owned by the Hilton ... and he stays there so many nights per year. So, we had a bottle of chilled champagne left in our room our first full day there. :) Adam and I shared it, then I had a half glass of wine with dinner.

I felt fine with the alcohol. It was weird though because it caused a babesia flare. So, I don't know what you're thinking, but I'm thinking champagne is the proper treatment for babesia! ;):lol: Just kidding ....

Nancy, yes, bart is short for bartonella. I took Levaquin for the bart along with a bunch of other drugs for Lyme and babs (babesia). Dr. R is a good doctor, too. I hear he likes IV more than Dr. H, though I've heard of Dr. H putting people on IV from the beginning.

You could be feeling better already .... I did when I started the drugs. But don't plan on much about three weeks into it, the Mepron will cause a heck of a herx about that time .... I couldn't even walk to the bathroom during that first herx! But afterward, I saw great improvement.

I take Enula for babesia, too. For babesia I'm on Mepron, Zith, Artemisia, and Enula (I'm on some other things too .... PM me if you want the whole list, I don't like to share the whole thing in public view :)).

I still need to sit down and type out the supps I'm on .... later. :)

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I finally found some really good scientificness about the hand condition I have called dupuytren's. I have very few of the risk factors but have it in both hands and both feet. I'm getting a contracture in my right little finger now so will see a hand surgeon this summer and it has also stepped up my interest in finding further answers.

Dr. E has a new treatment to try that is plant stem cell derived.

Apparently the whole chemistry of the hand/feet area is changed in this disease. Here's a few examples: The enzymes

matrix metalloproteinases, fibrinolysins, plasminogen activators and their natural inhibitors are disturbed. The cells in the dupuytrens tissue (the scar tissue that forms) is also unusually sensitive to growth factors--natural wound healing processes. The cells also have high levels of a number of substances. The tissue has very low oxygen levels, poor circulation, narrowing and blocking of capillaries. "Nodules show near complete absence of blood vessels, and other studies show evidence of low oxygen levels in the diseased tissues." There also may be an autoimmune response to collagen involved.

Kudos to anybody who reads all of this!

Anyway, there has got to be some reason this is all triggered. Also I think that the nattokinase should be helpful. Now what else do you all think might help increase oxygen levels in the area and rebalance the enzymes/chemicals?

Does anybody read French? I found this protocol for treating this disease with the plant stem cell deriviatives but the google translation of the French leaves more to be desired. Heres the website: http://www.reperes-sante.com/boutic/bou_ri....cgi?req=larges

Thanks, if anybody has input. I think I am the only one here with this.

Sherry

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Carla, Glad you had a good time.

Nancy that is so great that Dr. R got you right in!! It's good to hear of a receptionist that picks up on things rather than the barrier to keep patients out like it seems at times.

I've jumped in to try the Enula at full dosage and dropped the Zith (due to the ART testing results that they do not work together in my body). I'm still taking the andrographis at the same dose. I want to see if the Enula by itself does anything--and hopefully I'll know something in two weeks when I see my LLMD.

I'm going to ask Dr. E to retest artemesia (I think I didn't test well for it last winter, or it didn't test as having any benefit), and the other possible babs abx at the end of the month when I see her.

I've noticed that some people go back and forth between treating babs and treating lyme. Do you know how long the cycles usually are?

Sherry

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Does anybody read French? I found this protocol for treating this disease with the plant stem cell deriviatives but the google translation of the French leaves more to be desired. Heres the website: http://www.reperes-sante.com/boutic/bou_ri....cgi?req=larges

I think susie q knows french. She's quite indisposed right now with the deaths in her boyfriends family though. She knows a few languages but I don't know which ones.

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Happy 4th of July!!!

Just a little venting...I am really over all of this stuff. Holidays always get me really down. It's a reminder that another year has passed, and not a lot has changed as far as my symptoms. <_< I am very grateful that I do have a diagnosis, and we are treating something, but still...

I feel like we're missing something big. I don't know what it is...but I think there's something we don't "get" yet. When I see Dr H in a week, I'm going to ask him to do heavy metal tests, and to work on my gut. We're not doing anything to heal my gut other than probiotics.

I need to do the OAT test because I think that will help us figure out more of what's going on. But I keep forgetting...

I don't mind being in bed herxing hard, but the problem is I never really make progress. I really want to see Dr Amy, but I don't think we have the money to fly up there, and buy MORE supplements.

I am glad that the OB/GYN has finally run all kinds of tests, and I do think that my periods were a huge stressor on my body. So hopefully the pill will help with that...it will tell my body what to do, so my body doesn't have to try and figure it out.

It's just all so crazy to me. My mom wants to buy me a diamond ring for my 18th Bday, so we went looking today, and after one store, I was totally not interested. I actually really didn't even want to go....shopping used to be my LIFE! :lol: It's just indicative of how I feel...

Ok, sorry for the vent, just have to get it out to people who understand.

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Now what else do you all think might help increase oxygen levels in the area and rebalance the enzymes/chemicals?

I don't really know anything about your condition, but how about cardio/exercise or hyperbaric oxygen to increase oxygen levels?

I've noticed that some people go back and forth between treating babs and treating lyme. Do you know how long the cycles usually are?

Sherry

I think it's because the meds are so strong .. my LLMD treats both at the same time. He thinks the benefit outweighs the risk.

Ok, sorry for the vent, just have to get it out to people who understand.

Sorry Kassandra. I think the main thing holding you back from feeling any different is the iron. I never felt good when I was a little anemic .... and you are a LOT anemic! Get that fixed and you'll feel much better.

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Just a little venting...I am really over all of this stuff. Holidays always get me really down. It's a reminder that another year has passed, and not a lot has changed as far as my symptoms. <_< I am very grateful that I do have a diagnosis, and we are treating something, but still...

Kassandra,

I used to feel this same exact way. I HATED having to go through holidays. It especially sucked because I work in a grocery store and all day long I'd have to see everyone buying all the food that I cant eat....and on their way to some party or BBQ.

It was the most depressing thing....and sometimes I'd find it hard to hold back tears.

Just yesterday I was thinking about that and realizing that I no longer feel that way during the holidays! I dont get depressed and I dont feel so "left out".

I was talking to my friend about what a huge difference this is from a couple years back. I could barely stand to go to work and be surrounded by "normal" healthy people getting ready to celebrate with family and friends. These things dont phase me anymore because I'm not so "aware" of my issues.....my symptoms are less severe and I'm not forced to think about it every second of the day.

Like you said....it truelly IS indicative of how we feel.

But Kassandra, it DOES get better. :) So one of these days you're gonna realize that you too have improved enough that you are no longer feeling so bummed by the holidays. You'll enjoy the things you used to enjoy....like shopping....and you will want to go into EVERY jewelry store to find the PERFECT diamond. ;)

I feel like we're missing something big. I don't know what it is...but I think there's something we don't "get" yet. When I see Dr H in a week, I'm going to ask him to do heavy metal tests, and to work on my gut. We're not doing anything to heal my gut other than probiotics.

I need to do the OAT test because I think that will help us figure out more of what's going on. But I keep forgetting...

I think this is a good idea. If I could start all over I'd focus on the gut first. Even if metals are an issue....its still very important to work on the gut before doing any chelation. I knew this and yet I still went about it backward....mainly because I was in a rush...but also because I didnt know where to start with the gut issues. If I had done more testing in that area I would have had more to go on.

If you have certain things you wanna bring up in your next visit with Dr. H...just write them down as you think of them...and then bring the list with you. I'm really good at forgetting things....so for a couple weeks before I have an appt. I'll keep a paper on the desk right next to the computer. Whenever something comes to mind I write it on the paper.

As far as the gut issues go...the OAT test is the first one that I've been really excited about. I'm hoping I'll learn alot from it. I still have a couple weeks till my results are in.

I don't mind being in bed herxing hard, but the problem is I never really make progress. I really want to see Dr Amy, but I don't think we have the money to fly up there, and buy MORE supplements.

You could always put your name on the waiting list for when she's here (Bay Area). I know that Donna is on the list and she's been called a couple times already....she just wasnt able to make the appt.'s.

I havent really bought any supplements....but this probably has alot to do with the fact that none of them test well for me. I'm Dr. Amy's "less is more" patient. :P

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Kudos to anybody who reads all of this!

I had to read it twice to "get it"....but I made it through without my eyes glazing over. :D

Anyway, there has got to be some reason this is all triggered. Also I think that the nattokinase should be helpful. Now what else do you all think might help increase oxygen levels in the area and rebalance the enzymes/chemicals?

I think that hypercoagulation must be playing a role in this. This sentence almost describes hypercoagulation perfectly .... The tissue has very low oxygen levels, poor circulation, narrowing and blocking of capillaries. "Nodules show near complete absence of blood vessels, and other studies show evidence of low oxygen levels in the diseased tissues."

In my opinion the symptoms of this condition are caused by hypercoagulation. Did Dr. E. test the Natto for you?? It would be good to know which enzyme would be most effective for you. I actually didnt test well for any of them....but that part makes sense since they are plant/fruit based.....and I cant break those compounds down.

Its the pathogens which are activating the immune system.....resulting in the production of excess fibrin. So its MOST important to identify ALL of the pathogens. The enzymes can break down fibrin but as long as the pathogens are still there...the immune system continues with the fibrin production.

Wherever the oxygen levels are low....this is where the bugs will hang out. They thrive in an environment which is deprived of oxygen. The fibrin deposits actually play an important role in the survival of the pathogen...because where there is fibrin...there is also decreased oxygen and blood flow.

When the blood is flowing freely it is more difficult for the pathogens to survive. If the infections are unidentified its alot harder to get out of this state of hypercoagulation.

Another important factor is that fibrin also blocks nutrients. So when the blood is hypercoagulated....nutrients have difficulty getting to where they need to go.

I know that enymes have different cofactors...copper and zinc are two important cofactors for many enzymes in the body....but there are others as well. If any of the important cofactors are deficent....or if they are not getting to where they need to go ( blocked by fibrin deposits in the capillaries )...this could explain why the enzymes are inhibited.

Another important factor is mercury.....because we know that mercury has the ability to block/inhibit any enzyme in the body. It can do this directly....by taking the place of the essential cofactor in the cell. And I think it can also inhibit enzymes indirectly......by causing imbalances and deficiencies of important minerals.

Soluble fibrin becomes deposited in the micro-circulation (capillaries) as fibrin or fibrinoid-like deposition, blocking oxygen and nutrients transfer to parenchymal tissues. Many pathogens activate the immune system. These include viruses (such as EBV, CMV, HHV6 & others), bacteria (mycoplasma, chlamydia, borrelia, etc), fungi (such as candida), etc.

These pathogens are anaerobes, i.e., they live and reproduce in an oxygen deprived cellular matrix or environment. That

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I found out because of the terrible side effects from the methyl B12 shots.

What were the side effects?? Were your shots from a compounding pharmacy......or did they have added ingredients?

I've read alot about MB12 shots as an effective treatment for improving the methylation cycle in Autism. The vast majority of these kids have difficulties with the methylation and sulfation pathways.

I took MB12 shots for a couple months or so. It was Dr. Neubranders protocol...and the shots were compounded. For me there was no difference in symptoms either way....so I discontinued for lack of improvement....and because the shots were expensive.

I dont know what type of symptoms you experienced but my understanding is that the kids who actually need the MB12 the most...and who end up with the most improvement...initially went through a period of side-effects from the treatment.

It seems logical that as the whole cycle is "jumpstarted" and things start working again....that there might be a worsening of symptoms initially. But if the symptoms are severe....that would definately be reason to stop. I just thought I'd mention it.

Heres some info.....but with regards to autistic children and MB12. Symptoms are different in adults.

Lowering the dose until side effects disappear is a mistake, because the children with the most side effects who stay with the course are the ones who make the most recovery. However, side effects must be dealt with. The most common are hyperactivity with or without increased stimming, changes in sleep patterns, and increased mouthing (not pica, or eating of non-food item) of objects.

Dr. Neubrander agrees that certain side effects are an indication to stop this nutrient, such as an older child becoming uncontrollable and potentially dangerous to others or side effects that are so disruptive that a child can no longer function or learn.

However, he encourages parents to continue as long as a child can learn, attend to tasks, and stay focused in a controlled situation no matter how much increased activity there may be at home when the child can just let loose.

Mouthing objects is a sign that previously inactivated peripheral nerves are waking up and this represents a "positive negative" and a sign that the methyl-B12 is working. Within two to six months the majority of side effects diminish or disappear completely while the child continues to improve.

Anyways, you could always have the methyl b12 tested to see if your body wants/needs it.

And yes...nutragenomic testing could also provide some clues. I'm holding off on it right now because its expensive for one thing...but also because the testing isnt advanced enough yet....so there is alot that they still dont understand. I just dont know how much I can benefit from it...so I'm doing everything else first.

What do you do to support it? Is is the B12/Folate protocol?

No....actually B12/Folate didnt do much for me. I do need folate though....it was the only thing to show up deficient in my SpectraCell testing.

My problem seems to be linked to a deficiency of the PST enzyme and a faulty sulfation pathway. Heres an explanation of PST.

Phenolsulfotransferase (PST) is an enzyme that processes sulfur compounds namely phenols

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Happy 4th of July!!!

Just a little venting...I am really over all of this stuff.

I don't mind being in bed herxing hard, but the problem is I never really make progress.

Yes this gets really old fast. How long has is it been now since ABX? It took me 8 months before I started noticing progress, before that it was mostly herx.

SHerry

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Well happy fourth, oh well it's the fifth now. So some of the people in my household went to a poker party and my mother and grandma are on the couch sleeping after a few lemon drops.

I had a few screwdrivers and by a few I mean probably less than you would have.

We set of a few fireworks 50 dollars worth that lasted about 10 minutes. So I hope you all had a fun fourth!!

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Happy 4th of July!!!

Just a little venting...I am really over all of this stuff. Holidays always get me really down. It's a reminder that another year has passed, and not a lot has changed as far as my symptoms. <_< I am very grateful that I do have a diagnosis, and we are treating something, but still...

I feel like we're missing something big. I don't know what it is...but I think there's something we don't "get" yet. When I see Dr H in a week, I'm going to ask him to do heavy metal tests, and to work on my gut. We're not doing anything to heal my gut other than probiotics.

I need to do the OAT test because I think that will help us figure out more of what's going on. But I keep forgetting...

I don't mind being in bed herxing hard, but the problem is I never really make progress. I really want to see Dr Amy, but I don't think we have the money to fly up there, and buy MORE supplements.

I am glad that the OB/GYN has finally run all kinds of tests, and I do think that my periods were a huge stressor on my body. So hopefully the pill will help with that...it will tell my body what to do, so my body doesn't have to try and figure it out.

It's just all so crazy to me. My mom wants to buy me a diamond ring for my 18th Bday, so we went looking today, and after one store, I was totally not interested. I actually really didn't even want to go....shopping used to be my LIFE! :lol: It's just indicative of how I feel...

Ok, sorry for the vent, just have to get it out to people who understand.

Kassandra-

I really feel for you!! I feel very similar. Holidays are very hard with everyone celebrating and so on it kind of just highlights the things I cannot do or enjoy.

I really hope you get more answers soon and just stay strong which i know is a lot easier to sa than to do.

Miamia

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I had to read it twice to "get it"....but I made it through without my eyes glazing over. :D

LOL!

In my opinion the symptoms of this condition are caused by hypercoagulation. Did Dr. E. test the Natto for you??

Yes, I have been on natto since winter and just increased the dose. It works well for me. She said my current dose is good.

Its the pathogens which are activating the immune system.....resulting in the production of excess fibrin. So its MOST important to identify ALL of the pathogens. The enzymes can break down fibrin but as long as the pathogens are still there...the immune system continues with the fibrin production.

Wherever the oxygen levels are low....this is where the bugs will hang out. They thrive in an environment which is deprived of oxygen. The fibrin deposits actually play an important role in the survival of the pathogen...because where there is fibrin...there is also decreased oxygen and blood flow.

When the blood is flowing freely it is more difficult for the pathogens to survive. If the infections are unidentified its alot harder to get out of this state of hypercoagulation.

Another important factor is that fibrin also blocks nutrients. So when the blood is hypercoagulated....nutrients have difficulty getting to where they need to go.

I know that enymes have different cofactors...copper and zinc are two important cofactors for many enzymes in the body....but there are others as well. If any of the important cofactors are deficent....or if they are not getting to where they need to go ( blocked by fibrin deposits in the capillaries )...this could explain why the enzymes are inhibited.

Another important factor is mercury.....because we know that mercury has the ability to block/inhibit any enzyme in the body. It can do this directly....by taking the place of the essential cofactor in the cell. And I think it can also inhibit enzymes indirectly......by causing imbalances and deficiencies of important minerals.

Yes, I think the coagulation is a factor, I am just not sure how to get blood flow back in where there are no longer capillaries, etc. Stretching and massage actually causes the bad tissue to grow more. The interesting thing is that recently I have been thinking that the lumps in my hand are softer, but at the same time the contraction started.

Your quote was interesting because I tested by ART this time as positive for babesia, chlamydia pneumoniae and mycoplasma. So maybe just addressing what I already am is the best thing I can do. I am really curious about the plant stem cell treatment though and how it works.

Sherry

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Your quote was interesting because I tested by ART this time as positive for babesia, chlamydia pneumoniae and mycoplasma. So maybe just addressing what I already am is the best thing I can do. I am really curious about the plant stem cell treatment though and how it works.

I would agree that ART points to things that are the main stressors at that time.

I watched a DVD on stem cell treatment. It was pretty good. Don't know about plant stem cell.

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