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Rachel--24

Omg...i Might Be On To Something

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Another quick drive by...I'm in Portland, and able to "piggyback" on a wireless in the area, so hopefully I'll get to catch up over the next two days.

So cool today!!!! I got to meet Andrea, and the adorable kids! How fun! Wish you were all there.

I have my update almost ready to send by email...

The herx is better today and steady rather than pulsing with the meds. I am hoping to stick in there, and push it enough for that hard hitting attack on the lyme like you have talked about, Carla. But I'll check that with my LLMD before I do that. I am supposed to go up to 30 drops a day of the andrographis and herxed on 3 drops a day! Or it could be the stephania that I am herxing to.

OUr free house is really nice! Needs a few things, but there wasn't much food so it will be easy to clean out the gluten stuff. Yey!

Thanks for your thoughts and will be back soon with more update.

Sherry

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I have no good news about the insurance unfortunately. Sigh. They didn't even call us today like they were supposed to. No shock there. <_< So we paid $600 for 21 days of stupid Mepron! I started it tonight and am already herxing! Ahhh! I have a busy day tomorrow, but it's a b12 day, so hopefully that will help.

So I got back my stool sample tests and apparently I have a lot going on.

First of all, I am STILL off the charts for gluten! Ugh! What does that mean? I wonder if I do have Celiac?! Hmm! You would think after 10 months (I think....can't do math :lol:) I shouldn't still be reacting.

I have:

-a parasite. No surprise there. I will talk to Dr. H in February about going on Humaworm for that.

-opportunistic bacteria...well, it was very high. Does anyone know what this means?

-weak positive yeast issue

-high percentage of propionate

-high percentage of valerate

-WBC's are "few" and it should be negative

-Mucus is positive

-pH is very low

-many vegetable fibers :lol: :lol: I think that's so funny! They actually LOOK for vegetable fibers!

-high cholesterol- don't know how though...I never eat anything with cholesterol! :wacko:

-resistant to: amoxicilin, cefuroxime, ciprofloxacin, clindamycin, penicillin, potassium clacula, sulfa, berberin, and caprylic acid. I don't know what being "resistant to" means, but whatever

Now, the blood tests that came back are for Viruses. I am positive for Epstein Barr Virus (both kinds :() and Mycoplasma. Ugh, I have no idea what is going on with me. I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!

Well, there is more I wanted to say, but I need to get some sleep.

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Wow, I think I am finally caught up reading. We have a "friendly neighbor" here with an open connection, so are able to get online even though this house has no internet access.

The herx has settled into a more mild ongoing one, so I am hanging in there on the starting dosage.

I'll email my update in the morning to the several who want it...once I have time to add the list of meds Dr. E is suggesting I take.

Oh, boy have I ever wondered in the past if I had lyme!!! Especially in the first few months of treatment. After a lot of improvement, I am convinced but find it quite hard when I go to explain it to other people. Perhaps because of the controversy, because a lot of people don't know much about lyme, and because my treatments sound strange. Long term abx is not acceptable to most people, let alone alternative treatments. That's why it has been so great to connect up with everyone here.

Sherry

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Sherry, they say one day per hour of time change .... it's pretty much right on the money for me and jet lag ... you probably already knew that. Just try to get as much rest as you can!

LOL that's 16 days....

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You and me both!! :lol: I HATE the phone, lol.

Add me to the list of folk who dislike the phone, I don't mind receiving but often avoid calling out except for certain people or some business calls. I avoid calls where I am not really confident of what to say.

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April, that sounds interesting. Japanese and Chinese can have both similarities and differences.

Interestingly my strong color and bruising from the last gua sha has been clearing up quite rapidly the past two days. I wonder if the chlorella is helping that?

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OUr free house is really nice! Needs a few things, but there wasn't much food so it will be easy to clean out the gluten stuff. Yey!

I'm glad the house is going to be easy to get into shape. :D

Now, the blood tests that came back are for Viruses. I am positive for Epstein Barr Virus (both kinds :() and Mycoplasma. Ugh, I have no idea what is going on with me. I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!

Yes, you have lyme.

EPV.....I think happygirl had that but I'm not sure......hopefully she'll chime in.

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Donna, you really should try a neti pot. I still have my sinus problem, but the neti pot has been the only thing to give me relief.

April, your piccie is adorable :D

Kass, epstein barr is a nasty critter lol. Dr P feels that it was the start of my problems (which I agree totally with). He is of the opinion that it holes up in the adrenals and can wreak havoc there months or years later. With all that stuff going on, it's little wonder you've been feeling so rough.

Nyxie, I understand just how you feel about being in denial. I've been on the same roller coaster. I get to see Dr P at the beginning of March, and am having some tests in the meantime, so me and you can encourage each other to hang on in there until March, when hopefully we'll start getting answers and be back on the road to health :)

S x

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kassandra-

what stool test did you have done? was it genovas or a different one? it sounds really in depth.

Miamia

when i am gonna get to meet a fellow rachiellvillian?

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i think i need to clean under my bed because i have been sleeping really bad- maybe thats thekey. It seems like all of a sudden at night i get really nervous it doesn't seem normal- more chemical its really weird.

Where has Rachel been? Its been awhile

Donna-

i don't have anything exciting to say to you but i just haven't said hi to you in a while- I hope you are doing well and slept better last night.

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kassandra-

what stool test did you have done? was it genovas or a different one? it sounds really in depth.

Miamia

when i am gonna get to meet a fellow rachiellvillian?

It was Metametrix. It was really thorough!

Everyone,

I woke up at 7.30 this morning because I have to go see my brother....ugh! Thank god for b12 shots....it's like my coffee! :D

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Hey all, what a difference to be in another part of the world! Usually I check in the morning to find 3 pages of posts!!!

I sent the update about my visit with Dr. E by email. If you didn't get it and want it, send me a PM.

Sherry

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I am now starting to wonder if Lyme is my issue. I think this is just denial...but I don't know!
You have Lyme. It has weakened your immune system so much that these other things have taken the opportunity to reside in you.

Dr. B said in a talk I watched online that before they used to just treat borrelia for years and years .... all the other infections would eventually go away, too. That's because the Lyme makes it possible for you to have the other infections. Now they treat coinfections and that has cut down on total treatment time.

I'm glad the Mepron is working, LOL. How much are you taking? I was on 2 tsp. twice daily. Tastes yummy, huh?

LOL that's 16 days....

Or if you subtract the other way it's only 8 days. ;)

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Regarding the jet lag, it usually takes me 10 days, but if I stay up in the daytime and take ambien at night I usually function pretty well without much late afternoon dragging around.

Sherry

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Short update of my own. I had a BioSET appointment today...I'm at the point where I don't need to go that often, and we're done checking what they had me scheduled for, so now when I go in, they basically ask me what's going on healthwise, any complaints, issues, etc. So I told her (Denise) about my sinus infection.

She asked if I was having any other fungal symptoms, and I said I thought so because I've been having horrible itching, bloated belly, sinus issues and some other things, so she did the candida panel from the computer. TONS of stuff came up and sure enough my sinuses came up. TMJ came up and she asked if my jaw hurt...it has, but I told her it seemed connected to my ears...my ears hurt too...kind of like an ear infection. Sure enough, ears came up, lol.

So, I need to recommit myself to really sticking to the diet... I haven't been. :ph34r::ph34r:

I made my next appointment for next month.

I also checked to see if I'm on the list to see Dr. Amy when she comes. They said she is going to try to come every MONTH!!!! That'd be cool!

-resistant to: amoxicilin, cefuroxime, ciprofloxacin, clindamycin, penicillin, potassium clacula, sulfa, berberin, and caprylic acid. I don't know what being "resistant to" means, but whatever

It was Metametrix. It was really thorough!

I was going to say it sounded like my Dr.'s Data test. What they did for that was to test various agents, both prescription and over the counter, against the particular bacterial issues and see what worked best. For me and my particular bacteria Oregano Oil and Caprylic Acid was VERY effective against ALL of the bacteria. There were a couple of things that worked okay for one or another, but these two worked on all of them. So it sounds like the test you did tested your stuff against the various supplements and meds.

Donna, you really should try a neti pot. I still have my sinus problem, but the neti pot has been the only thing to give me relief.

No, no :lol: It's giving me e-coffee nightmares, lol. :lol:

i don't have anything exciting to say to you but i just haven't said hi to you in a while- I hope you are doing well and slept better last night.

Hi sweet Mia!!!! It's always good to see and hear from you! I slept a little better, but apparently not good enough....my mom told me today that my dark circles are back. <_< They'd been getting better.

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Kassandra,

People with Lyme have mulitple issues....I've never heard of anyone *just* having Lyme. I dont think that there's a specific order as to what leads to what...in the end its a bunch of factors all contributing to unwellness.

There are MANY people who have Lyme and are not sick...they havent reached that point where the immune system has become overwhelmed...and they may never reach that point...everyone is different.

Personally, I dont believe that Lyme is *the* main factor in every case....but for you it very likely is. You will most likely need to address many things in order to overcome it. Your immune system has to be strong enough to keep the Lyme in check (after treatment)...the more things that you have going on the more challenged your immune system will be.

Most of these infections are opportunistic...including the Lyme. They work together..(with the help of metals and other toxins)...and they create an environment which is favorable for them. All of these things together can severely weaken the immune system....leaving you even more vulnerable.

Its almost impossible to say which symptoms are caused by Lyme, which by parasites, which by candida, which by an overwhelmed liver, etc. etc. Basically most of us just have alot going on and when you address each issue you take a burden off of your immune system. Ultimately, you want to remove as many burdens as you can identify so that you can regain your health.

Often people are just treating the Lyme...but then relapse after treatment is a strong possibility because all of these other factors are still present....and still weakening the immune system. Lyme will come back just like candida will come back if conditions in the body are still favorable for the bugs.

Dont think that because you have so much going on you do not also have Lyme. Just know that by identifying these things and treating them with the Lyme...you have a much better chance of fully regaining your health without having to stay on abx for years and years.

You are doing the right thing in testing for all of these contributers. Some of them may be causing more of your symptoms than the Lyme itself....everyone is different. For many people coinfections are more of an issue than the Lyme...and without those coinfections and other factors (such as metals) the Lyme itself would not be causing chronic illness. The more infections you have the weaker your immune system will be...and the weaker your immune system is the sicker you become.

Also, all of these issues have an impact on how well your body is able to detox...once these organs become overwhelmed by the toxins from all of these infections youi will feel the symptoms. The symptoms are mainly coming from toxins which the body is unable to clear. Lyme produces neurotoxins...its a huge burden.

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I also checked to see if I'm on the list to see Dr. Amy when she comes. They said she is going to try to come every MONTH!!!! That'd be cool!

That would work out GREAT if she's able to do this. That would pretty much resolve the problem of having so many patients waiting to see her.

I'm sure follow up appts. would still be every 3 months...but by coming every month she can see ALOT more patients without having to extend her visits.

She could probably just come for a couple days each time.

I hope this means you'll become a patient soon. You will LOVE her....she is amazing! :)

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Its almost impossible to say which symptoms are caused by Lyme, which by parasites, which by candida, which by an overwhelmed liver, etc. etc. Basically most of us just have alot going on and when you address each issue you take a burden off of your immune system. Ultimately, you want to remove as many burdens as you can identify so that you can regain your health.

This is sooo true. Lyme is my main problem, but I don't think it's causing all of my symptoms...it's just allowing all the other stuff to go bonkers.

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I hope this means you'll become a patient soon.

Me too! :) :)

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Rachel,

Thanks for that. I know I have Lyme, but there is a part of me that keeps thinking that's not the case. ;) I am really worried about detox. I plan on talking to Dr. H about that when I see him on Feb. 9th.

Everyone,

I think that I'm just frustrated about Lyme, etc. because everyone in my family thinks I am letting this take over my life. I have NEVER been one to be sick, for example I went 30 days with a period before I told my mom! :lol:;) I don't like being sick at all, but for now I need to focus all of my energy on getting better. I am still going out when I am able to but since I'm not in school, they are all freaked out.

On a random side note, I am worried about detox. I know people take chlorella and charcoal, but what else can I do? I just worry that I am not going to detox well and then next thing we know, I'm dealing with high liver enzymes, etc.

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Donna,

I am actually doing good on my diet so far. It's not an anti-candida diet necessarily, but it's the diet from Dr. B's guidelines, the LLMD just basically copy and pasted it for me. I think it's easier than a strict anti-candida diet. I don't have a huge problem with candida, so they aren't having me be super strict. For example, I can still have vinegar and condiments that don't have sugar.

It feels much more manageable than a strict anti candida diet, for me anyway.

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Kassandra, I do the coffee enemas, take saunas, and drink lemon water for detox. I take chlorella if I feel toxic, like during a flare up or herx.

The parsley and burbur of the Cowden protocol is also for detox.

Maybe you can see if your grandparents will buy you a spice ship .... or maybe your dad when he's here. :)

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