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Rachel--24

Omg...i Might Be On To Something

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Mia,

I don't know what caused your reaction but I hope it's short lived. :(

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Rachel or anyone else taking whey protein......

If it doesn't list the amino acid break down does it still have it in there. We found some that listed and some that didn't. Without having a canister in front of me it's hard to remember what was on the list.

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Rachel,

I forgot to say that Dr. Amy was there but I didn't meet her today.

I think she was the one who had a brace on her arm.

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Just wanted to :wub: :wub: :wub: :wub: in!

Weird coincidence: Today June 28 is the 4 year anniversary of the day I think I contracted Lyme (looking at an old document I wrote up for my PCP in jan 2004).

Thos evil buggers are back to celebrate their anniversary. Not this time baby- YOU are getting slayed :lol: :lol:

Die bacteria die! :wacko: :wacko: :wacko:

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Hey

rachel

have you ever taken l-glutamine?

Yeah...2 years ago...I still have a huge canister of it. I think I reacted badly to it which is why I stopped taking it. This was back when I was trying to self-treat (and not doing a very good job of it :rolleyes: ).

I was trying to "fix" my leaky gut. :D

I could have been taking too much of it...I dont really know....nothing was really working...I was like grasping at straws.

Its a good supplement to take though. I dont know if I was having problems with it....or if it was something else...it was a long time ago.

Talitha feels ok......straight from her mouth. :)

She just learned how to swallow pills tonight. She did good. :)

Good for her! :)

Yep, sulfa is important, which is why she's starting with it. There is quite a protocol before and after treatments. We were given a nice big printout that goes over all the LED treatments and what needs to be avoided before hand for each one.

Yeah...I was told in my emails that the sulfa problem is pretty much universal for those of us who got sick. They always start out with the sulfa treatment first. The sulfa residuals can prevent all the other treatments from working.

I'm excited about it. :)

Rachel or anyone else taking whey protein......

If it doesn't list the amino acid break down does it still have it in there. We found some that listed and some that didn't. Without having a canister in front of me it's hard to remember what was on the list.

Make sure the whey protein is undenatured...thats most important. Most whey proteins you buy at the store are denatured....so they're really destroyed....that means the proteins arent active.

The stuff I have has a list of all the amino acids. This is what I use:

http://www.metagenics.com/products/detail.asp?pid=187

Rachel,

I forgot to say that Dr. Amy was there but I didn't meet her today.

I think she was the one who had a brace on her arm.

Yeah...that was her. :)

She messed up her wrist lifting some heavy stuff in her garage. :(

Thos evil buggers are back to celebrate their anniversary. Not this time baby- YOU are getting slayed :lol: :lol:

Die bacteria die! :wacko: :wacko: :wacko:

:lol::lol::lol:

Bev...you have such a great spirit! Always make me laugh. :)

Bevy the borrelia slayer.

:lol:

Yeah...thats PERFECT for Bev!!!

I LOVE that!! :D

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I dont know how it fits...I know nothing about copper toxicity. :unsure:

There seems to be alot of info. in this book I have so I'll have to see if I can learn anything. I'll PM you and let you know when I post anything I might learn.

Thanks, I appreciate that.

It seems like copper can do alot of what mercury does in the body. It also says that copper interacts with mercury in the body.

It says DMPS does increase copper excretion significantly...but DMSA does not.

I have to read more but hopefully you're detoxing better now that you're Gluten-free Casein-free and hopefully DMPS will be more effective in future treatments.

It says copper absorption can be reduced by excluding high copper foods, scrupulously avoiding copper in supplements, and taking 10-30 mgs of zinc and 250-1000 mcg of molybdenum with each meal.

I dont know which foods have high copper. I would check with the Dr. and see what he says.

It says the Carl Pfeiffer Center has extensive knowledge in treating copper toxic individuals and may be willing to cooperate with your Dr. to help him know how to treat you best. Theres a phone #...let me know if you want it.

Is it possible you were taking alot of copper in supplements?

It would be interesting to know if this is contributing to your symptoms. I guess if its indistinguishable from mercury and it does the same thing....its probably still a part of that "toxic world" so the DMPS is pulling those metals out and releasing the bugs.

Hmm. Interesting. Yes, the former vitamin I was taking had copper in it. I am no longer on that, and I think that was one of the reasons. What I am on now has more selenium, no copper, less molybdenum.

I know that I asked my doctor at one time about the copper, and I can't remember too much what he said. I recall him saying that he was less concerned about that than the mercury. He said any level of mercury is not good.

Also I don't have my 2000 levels here for comparison prior to lyme treatment.

So maybe to put this all together: going Gluten-free Casein-free encouraged gut to begin to heal. This increased my ability to absorb stuff and eliminate toxins and also probably awoke my immune system to discover more lyme. Some symptom return could be retracing. Chelating may have not been hugely successful to date. Chelating with DMPS every 2 weeks without ongoing lyme treatment may have also brought opportunity for the lyme to expand. Current symptomology is consistent with lyme, celiac, metal toxicity, food allergies, candida or some combination of all.

So currently for detoxing, I'm taking probiotics, activated carbon, drinking water, coffee enemas. Supplements include B complex with B-12 but the cyancobalanim type, minerals, Vit A, Vit C. Taking a liver support. Taking lysine (for the lyme, can't remember how it helps). Plus 1000 mg magnesium.

Sherry

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Weird coincidence: Today June 28 is the 4 year anniversary of the day I think I contracted Lyme (looking at an old document I wrote up for my PCP in jan 2004).

Wow!

There won't be that many around next year at this time. :) Their party is about over.

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Rachel,

Did you pick your whey protein up at WF, or the doctors?

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Rachel,

Did you pick your whey protein up at WF, or the doctors?

I got it from the Dr.'s office. I dont think they sell it in the store....or at least I've never seen it.

Actually Lisa said she bought my brand of whey protein but then returned it because of soy. I dont know if she got it online or in a store.

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I know that I asked my doctor at one time about the copper, and I can't remember too much what he said. I recall him saying that he was less concerned about that than the mercury. He said any level of mercury is not good.

I agree with what he said....mercury is definately worse. From what I understand the metals, environmental toxins, infections....all of it is pretty hard to get rid of until the mercury is dealt with.

I've read many times that once you get rid of the mercury all of the other toxins will follow. The bugs are much easier to get rid of once mercury is out of the body. The other metals (including the copper) might be difficult for you to get rid of because of the mercury....and they could all be having a synergistic effect.

So I agree with him on that. I would probably just focus on the mercury and then if the mercury is going down but the copper stays elevated...then see what you can do about the copper.

Current symptomology is consistent with lyme, celiac, metal toxicity, food allergies, candida or some combination of all.

I would say its all related....the metal toxicity is basically the one that will prevent you from recovering from the rest. If you've triggered Celiac obviously that would be forever....but once you get rid of the metals you should be able to get rid of the candida which should allow for alot of improvement with food and chemical sensitivities. Once you get the metals out you should have more luck with the Lyme.

Have you ever had a CD57 test?? This will give you a really good idea of where your immune system is at with regards to Lyme. Alot of LLMD's will continue to treat Lyme (even if asymptomatic) until the CD57 is showing that your immune system is capable of handling the infection on its own. If the CD57 is still low...its a really good indication that you'll relapse off of treatment.

So currently for detoxing, I'm taking probiotics, activated carbon, drinking water, coffee enemas. Supplements include B complex with B-12 but the cyancobalanim type, minerals, Vit A, Vit C. Taking a liver support. Taking lysine (for the lyme, can't remember how it helps). Plus 1000 mg magnesium.

The one thing that my Dr.'s say is really important during any chelation is kidney support. Maybe you could add something in your detox regime for kidney support??

I'm gonna post some of the stuff my Dr. uses in the next couple posts.

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More stuff from my Dr.'s presentation:

Non-prescription Lyme treatments

To reduce the virulence of co-infections, it has been my preference to start treatments with more broad spectrum herbs, then switch to prescription antibiotics if needed

Samento (work up to 30 drops daily or more in water or juice with electrolytes) If tinctures are not tolerated I like Raintree Nutritionals Cat

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Clinical signs of yeast/fungus

Gas and bloating

Lower abdomen is resistant to weight loss

Kids- high pitched squealing, silly , flushed cheeks and stimming

White coating on the tongue

Brain fog and fatigue

Vaginal or anal irritation/itching/redness

Headaches

Weakness/ fatigue

Sugar cravings

Stabbing sensations

Light sensitivity

Rashes

Memory loss or concentration difficulties

Joint pain and morning stiffness

Shortness of breath

Sinus congestion

Numbness and tingling

Skin sensitivity

Muscle aches and pains

Treating Fungal Issues

Diflucan (Fluconazole) for 1-3 months continuous (this also helps to address the Lyme issue)- it is also inexpensive now

Nystatin for 1-3 months or longer

Amphotericin B (250mg BID oral dosing for 6 weeks)

Yeast/Fungal Defense by Transformation Enzymes

Candicid Forte

Probiotics (like Klaire Therbiotic Complete, Metagenics Ultra Flora Plus or BioImmersion Beta Glucan probiotic to stimulate gut immunity)

KMT program #6

Uva ursi or Pau D

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Supporting the Kidneys

This organ is an absolute must to support if you are chelating metals!!!

Renelix by Pekana

BioPure Matrix Electrolytes added to all fluids

Burdock or Dandelion tea

Nestmann Solidago tincture

Acupuncture/ Neural therapy

K-Drain by Transformation Enzymes

Emergen C added to liquids

Tapping on K27 whenever taking supplements

Function of the liver

Detoxifies chemicals, drugs, hormones, etc.

Stores vitamins (A,D,E,K,B

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Heavy Metal Detox

Clear the excretory organs first, before chelating the brain

Remember: Lyme infections deplete minerals (esp. Mg) and treating infections helps to restore mineral balance

DMPS, DMSA or EDTA (it can be safest to start with EDTA)

Transdermals can bypass the gut if digestion is very sensitive

Dr. Neubranders mB12 protocol (methylcobalamin)- www.drneubrander.com

BioPure Chlorella pyrenoidosa or CGF Chlorella (the CGF chlorella is often tolerated better in women when you first start)

Modifilan- (brown algae that binds metals and helps to balance hormones)- Start with 2 daily and work up to 6

Phospholipid Exchange (small daily doses like 1 tsp daily in women, up to 1 Tablespoon daily in heart conditions)- contains alpha lipoic, magnesium, EDTA and phospholipids

BioPure CGF liquid- a good mobilizer and early intervention

BioPure Cilantro tincture (orally up to 20 drops in hot water or topically along the lymph)

NDF or NDF Plus

Multi-minerals (especially on the non-chelating days

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The importance of trace minerals

Chromium-regulates blood sugar/metabolism

Vanadium-helps control blood sugar

Iodine-affects metabolism via thyroid hormone

Selenium-anti-oxidant(in glutathione peroxidase)

Rubidium-for normal stomach function

Iron-binds oxygen in red cells & muscle

Molybdenum-aids liver detoxification.

Lithium-helps form neurotransmitters

Copper-forms hemoglobin & collagen; in SOD

Zinc-in metabolism, detox, immunity, reproduction

Importance of basic minerals

Calcium-contracts muscles; strong bones/teeth

Magnesium-relaxes muscles; helps metabolism

Phosphorous-builds bones; makes ATP energy

Manganese-aids metabolism; anti-oxidant(SOD)

Sulfur-crosslinks proteins in skin,hair,joints,etc.

Silicon-builds bones and connective tissue

Boron-aids steroids to stimulate healthy bone

Potassium-aids nerve function/electric potential

The role of basic vitamins

Vit.A- helps vision, immunity & mucosae

Vit.D- regulates calcium; reduces cancer risk

Vit.E- anti-oxidant; protects cell membranes

Vit.C- anti-oxidant; forms collagen/hyaluronate

Vit.B1- metabolism cofactor(energy production)

Vit.B2- makes FAD/FADH (energy intermediate)

Vit.B3- makes NAD/NADH(energy intermediate)

Vit.B5- makes coenzymeA(energy intermediate)

Vit.B6- metabolism cofactor(energy production)

Vit.B12- helps nerves & bone marrow (blood)

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Clinical signs of parasites

Rashes on the chest or neck

Discoloration around the mouth

Males often have risky behaviors

Aggravations around the full moon (bloating, irritation, etc)

Treating Parasites

(the most difficult to lab test, but the first thing to treat)

BioPure organic freeze dried garlic

Artemisinin pulsed in high doses 3 days on every 2-3 weeks

Vermox/Mebendazole (100mg BID * 3days, then repeat after 3 weeks)

Biltricide (600mg TID for one day then repeat in 2-3 weeks)

Tinidazole for giardia/amoebas (500mg BID for 10 days, usually following a different parasite treatment)

Albendazole (28 day course)- rarely needed in kids and typically only for severe neurological symptoms that have not resolved with other treatments

Alinia (dose varies)- 20 day protocol is great for MS and Babesia

Herbal Cleanses (Dr. Natura Colonix, Botanifuge

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Dear Rinne,

Isn't it annoying when people insult your intelligence? :angry: Especially when it is the media? Half of these people judge the celebrities, which they have no right to do. They talk about how bazaar celebrities' behavior is. There is not such real thing as journalism anymore. All they do is talk about their opinions. What happened to real news?

The celebrity combination nicknames are so awful! :rolleyes: I cannot believe the absurd combinations! You get so tired of hearing about them day in and day out. Don't get me wrong, I do like to know what people are up to. However, I have no desire to hear the name in every sentence!

Dear Carla,

I agree that no one treatment is proper for everyone. That is a big problem with doctors. They tend to think everyone responds to the same treatment. That is not the case. We are all different.

I am sorry to hear about the flare getting you down. Hopefully, it will not last too long. They are tough to deal with. Do flares have a cycle like herxes? Or do they just pop up at random?

I cannot believe that woman with brain cancer put her infant at risk like that! :o That is so sad. The poor child never had a chance. I am wanting to move my computer out of the basement, because the mold is so bad. I am nervous about the EMFs though, because my PC would have to go in my room.

My parents were thinking the Celiac needs tested. Apparently, my doctor's word for it is not good enough. :rolleyes:

I told them, the Lyme is more dangerous. I have been gluten-free for a long time. I really do not think I should wait on the Lyme testing. They are paying for it, though. I suppose I do not have a choice.

Dear Andrea,

Poor little T! She has so much wrong! :( I hope all of the supplements agree with her. I am so happy she had a productive appointment! We are pulling for her! I would like the complete list as well.

I know you are probably very worried. That is understandable. This is a lot to deal with. They did test her for compatibility, which is smart. At least now she will not be given anything that is not good for her system. I am not surprised about the yeast either, because that can cause children and adults to be moody.

Dear Lisa,

Hey, we are here for each other! HUGS! I understand what it is like. It really is nice to be here in Rachelville with everyone. They actually understand how scared you are, and no one else does. Sometimes you feel like you are the only one suffering in the world.

People around you have no idea what it is like to be so scared or miserable. The chronic pain is a real problem. Right now, I am getting pain all the way down into my neck and upper back. I do not know if it is my wisdom teeth, Lyme Disease, or a combination of the two. Naturally, my parents opt for Celiac Disease testing, instead of the more deadly and not taken care of illness.

I did not know there could be mold balls in your body! OMG! That is horrifying! Our house has mold in the toilets, in the shower, and in the basement. No wonder I am sick, huh? I will never get well with all of that stuff everywhere. I think the mold is probably toxic, but Dad does not believe it.

Dear Donna,

We love you too! :wub: This is a terrific place! We are all blessed to have been guided here! There is so much knowledge, support, and humor! Knowing we all respect each others' views and beliefs, no matter how different, and still share so much of our lives and struggles is amazing.

I have mold all over the place, too. We even have a dehumidifier. Still, you can smell it in the basement, and it is not good. I wonder if I will ever get well as long as I live here. I bet I would feel a little better once I move out. God knows when that will be. Please God let me win the lottery so I can get out of here!

Dear Bev,

That herx sounds so awful! HUGS! Puking is no fun at all! I do anything to avoid it. The heat might have done it. Heat is something I do not handle well.

The heat has been quite unbearable. We have started to cool down a bit from how it was. I hope you guys finally got some rain to fix that situation. Severe weather does have its benefits. We actually got lucky for once the other day. As long as the power does not go out, I am alright. No air = I go to someone else's house until it comes back on!

I am fascinated by the histamine connection as well. The only thing that stops my glutening reaction is phenergan. That stuff is a godsend. I have it on hand in case I need it. Before going gluten-free, I had to take it a lot more. I just wish it did not make me so drowsy!

Dear Mia,

That reaction sounds terrible! It could have been any of the things you mentioned. Unless you eliminate them all, then add them back, I do not think you will know for sure. The cause is not easy to determine when so many factors are involved. Try to take it easy!

Dear Rachel,

Thank you for all of the information on detoxing, mercury, and supplements for liver/kidney support, parasites, Candida elimination, and Lyme. I have them in my health file now. They are there in case I need them. I am getting pain in my head and neck. I wonder if Lyme bothers your wisdom teeth. I would not be surprised.

Of course, my parents want to do the Celiac testing instead. How the Hell am I related to these insane people? This is rediculous. Sometimes I swear that they are trying to kill me because they have a secret life insurance policy on me or something. Hey, I do not trust people.

Dear Sherry,

I know someone whose preacher's daughter had copper poisoning. She was having terrible abdominal pain, diarrhea, nausea, and vomiting. The poor girl could not keep anything in or down. I am not sure what they did to fix it, but could ask.

I could do some research for you. Let me poke around and see what I can find.

The Lyme relapse certainly occurred for a reason. Anything could set it off. You may be fine, then get a cold, and that could set it off. Other factors are contributing I am sure. I know the air in China is quite polluted from the factories. A man named Peter Hessler was a correspondant there. He got very ill due to the pollution.

Dear tom,

I can so relate to the sloppy roomies! My parents are unbelievable. Can you believe my father told me that it was disgusting because I had some Cocoa Pebbles spilled on a piece of paper that I had not gotten to throw away yet? This is a man that has petrified sausage biscuits from MacDonald's in his car. That thing was so hard, it could have been used as a weapon. (See Magic Bullet Chocolate Pudding Bomb.) God only knows how long it had been there.

He also is too lazy to empty the trash. In their bedroom, his side has a larger trash basket. It is probably two feet deep! Yet, he will have trash going halfway up the wall! Talk about disgusting! He has no right to say anything about me!

If it were not for me, those dishes would never be washed. Plus, he is too lazy to do laundry, so if me or my mother do not do it, he just goes out and buys new underwear and socks! He typically uses the same towel over and over to dry with after a shower. I would like to point out, that this is not clean. Then, there are the bowls he leaves in the den behind his chair or on the little table next to his chair. The spoon is stuck to them from him eating cereal!

Dear Susie,

I hope your MRI goes well! You probably will not know anything for a few days. Much of the time, results take a week to come in anyway. I am sure you will do fine. Just do the best you can!

Dear Julie,

How are you doing? I do not believe I saw you on today much or yesterday. Maybe you were lurking when I was sleeping. I slept during the day mostly yesterday. I am on a wacky schedule again.

Dear Judy,

Where are you? Have you been lurking at all? I know you have a lot of trouble getting the doctor to see things your way. I found it is best to ask questions to make them feel smart. Doctors are so pathetic when it comes to egos. We have to help stroke them.

Dear Alison,

Well, I got that test piece back of my hair. The hairdresser played with it. That was an ugly color. It looks like the black is me! Oh well. Now I know!

Dear Charlie,

That condition your sister has sounds interesting. I have some symptoms like that. I am very sensitive to touch. Do you have a link you could provide? I could use more information on that. I was diagnosed with Fibromyalgia over six years ago. Lyme is a possibility for me, so I would not be surprised if RSD was related to it somehow.

Sincerely,

Jin

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ok i am going to try to remember everything i wanted to say

First Andrea- Wow it sounds like that was a very productive appt. for T But alot you must be overwhelmed!!!! At leadt you are taking action and as always seem to be handling it well. You are mommy of the year !!!!!!!!!!!

Rachel-

wow lots of scientificness and useful info.

Thanks everyone for chiming in i do think i was reacting to the treatrment and while i am still feeling bad hopefully it is for the greater good and i can get some answers (if i feel as bad as i did yesturday today i might change my opinion on this!!)

Ok other stuff that came out of my appt.- I am going to start taking a few things- all homeopathic type treatments. Black Walnut it fights bacteria and worms, shows anti-tumor activity, and serves as a gentle laxative

There are 3 other things which center around constipation all are gentle!!

I also got PH strips and have to test my pee every morning and until i get a ph reading of 7.0 he wants me to take 1-2 tsp of baking soda in water to get me more alkaline.

I think i might put in a call to him today to tell him about my reaction adn ask him what he thinks.

I have another Physical therapy appt. today I don't really want to go becasue i ahve had so much running around all week and I am really run down but i know i probably will feel better once i go. I am just waiting till tomorrow though when i can really relax(hopefully)

oh one more thing -

Lisa-

I take L-glutamine it is a staple for me. Its one of the few things i have had no problem with and find it very soothing. Even the new doc asked if i was on it becasue he wanted me to take it. I even find it is helpful with occasional reflux that i get. I mix it with my Digestive enzyme and a little carrot juice and take it 3 x's a day.

ohi lied one more thing- I've been testing my supplements lately by cutting them out and then re adding them . I found my digestive enzyme is actually helpful for me (it is the same one i have taken for a hwile and the ponly one that didn't give me a bad reaction) Rachel i know you ahve had really bad luck with DEs I wonder if you could take this one)

And I also found the three lac i take is helpful for me. (although definitly not the miracle product they claim it to be) My nes doc was happy i was taking this he thinks it is a good product.

Ok thats really it for now

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oh ha ha i lied one more thing-

I just think it is funny everyone os trying to cut out almond butter and i am trying to add it. I have added it in for 2-3 weeks now and it seems (fingers crossed) to be ok . Again only this one brand for some reason. I even used it in a drink the other day. the only problem is it is so good i am always tempted to eat the whole jar but i am very good at carlaing so i haven't had any unfortunate events as of yet- but i was close the other day i ahd to call my mom and have her tell me to put the jar down!!!!!!

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They are tough to deal with. Do flares have a cycle like herxes? Or do they just pop up at random?

Flare ups are an increase of symptoms, but not a herx. They can happen at anytime. I'm starting to think this is a result of chelating and changing abx.

I just think it is funny everyone os trying to cut out almond butter and i am trying to add it.

I'm NOT!!! I eat it in fudge ... that fudge recipe I posted earlier with raw cacao nibs, almond butter, coconut oil, vanilla, and agave syrup. The recipe says you can use 1/4-1/2 cup of agave, I use 1/8, it's plenty.

I've been eating a bowl of frozen raspberries, blackberries, and blueberries with homemade whipped cream from just pure whipping cream, no sugar, and a piece of fudge as a "meal". It totally looks like something I shouldn't be eating!!! After not having sweets for so long, it tastes sweet, though it probably wouldn't to someone used to eating stuff with sugar.

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Dear Mia,

I hope the Black Walnut helps! I think your doctor has a good idea of what is going to be beneficial. :) The treatment might have made you react. There are many variables, though. It is probably a good idea to call him and ask, as you said.

That is wonderful news about the almond butter! It is great you are tolerating it! I am glad you are good at Carla-ing. I wish I could say the same for myself! However, I am happy to report I have been pulling a Susie on the potato chips, and so far, so good!

Dear Carla,

I knew herxes were not the same as flares. I just did not know whether the flares were cyclical. It appears they occur whenever. That can be very inconvenient, because it is not predictable. That is frustrating to deal with.

Sincerely,

Jin

P.S. Susie, I see you!

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