Omg...i Might Be On To Something

[confusedks 1]

Ok, I am going to post a list of questions I'm going to ask Dr H tomorrow...I'm really spaced out today, so can anyone think of anything I don't have on here?

-IgG Subclasses

-Detox HLA Gene

-Something non-addictive for sleep/anxiety/depression

-Detoxigenomic Profile, done at Genova Diagnositcs

-Asthma or air hunger

-anemia results

-if unable to detox

[CarlaB 22]

Carla, hope the herx lessens very soon. Sounds rough. I keep wondering if my symptoms are an almost constant herx on the andrographis.

Thanks.

How well did you muscle test for the andographis? How long have you been on them?

It's pretty palatable with the apple in it.

Sherry

Palatable? Ugh. Don't know if I could face that first thing in the morning, LOL. Actually, I have a juicer and used similar things to what you mention .... it's the pulpy stuff I'm having trouble imagining! I don't know that my blender is good enough for that! Of course, if I had C, I'd try it.

Ok, I am going to post a list of questions I'm going to ask Dr H tomorrow...I'm really spaced out today, so can anyone think of anything I don't have on here?

Looks good to me.

The night before last I slept ten hours .... woke up twice and went right back to sleep. Last night I was back to my five hours.

[confusedks 1]

The night before last I slept ten hours .... woke up twice and went right back to sleep. Last night I was back to my five hours.

That sucks! I didn't fall asleep until 2.30 AM and had to wake up at 8.00. I tried to go to bed around 11, but I had horrible chest pain and palpitations, it was really scary. So someone on lymechat was asking me all these questions, and suggested I go to the ER. Well, I hate the ER! So I didn't go, and I'm sure I was fine. I think it might have been a herx, but it was scary! Needless to say, I couldn't fall asleep after that whole thing.

[confusedks 1]

I had my appt with Dr H... it went really well! He's changing lots of meds, etc. He decided that instead of dancing around with the slow progress (like, VERY slow) we are going to start IV. He said I will need it anyway, so we might as well just get going. I will be working out all the details of getting a Port, etc.

I will type up an update soon and send it out to everyone who I have emails for.

[Green12 2]

Happy Birthday to Morgan!! Sorry about Adam's watch Carla, that was quite the skilled pick pocket to take it right off his wrist Hope you are feeling better.

Kassandra, glad you had a good appt. look forward to hearing about it

Sherry, I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

Little Miss Allergy, congrats on your diagnosis. Someone else mentioned (I think) that around here we give praise for a diagnosis because then you know what you are dealing with and you can get started on the road to recovery with treatment....so it's a good thing!

Andrea, that's awesome about the corn pasta at the Old Spagetti Factory. We used to have one here, but I think it closed down. It's great to hear that more and more eating establishments are getting that food allergy/intolerances are a serious issue, especially gluten, and jumping on the bandwagon offering gluten-free items.

[AndreaB 1]

I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

That's right......that's an article I wanted to read but didn't have the time earlier......off to find the link......

Happy Birthday Morgan!

[AndreaB 1]

Julie,

I couldn't find it (Klinghardt), I had read Sherry's link for the HBOT though.

Can you post the link again if you have it handy? If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.

[ShadowSwallow 0]

Kassandra,

Can't wait to hear about your appointment. Sorry that you need to go on the IV abx, but I'm glad you guys have a plan.

Everyone,

I'm just keeping up here. Ups and downs... emotionally down a lot. And I'm not on the computer as much as I used to be.

Birdy

[Green12 2]

Hey Charlie, glad to see you pop in. I haven't done well with any protein type bar (nut, seed, or fruit) so I gave up on them. I'm not really familiar with any of the brands out there, I am sure there are new ones all the time too. Sorry can't be of more help.

I'm pretty bummed out right now because for some reason I decided to look into my Graves/hyperthyroid....even though its not an issue anymore.

I read all kinds of stuff stating that zinc/copper imbalance causes thyroid problems. The presence of the toxic metals and the imbalances they cause can trigger hyper or hypo....and then its corrected with detoxification and mineral balancing.

Now I have to take thyroid meds for life but it probably would have completely resolved on its own once everything got back in balance.

This is a total bummer Rachel, stupid mainstream Drs indeed.

Constipation and detox treatment from my Chinese friends:

If you can handle raw foods this might work. They take 2 stalks of celery, about 4-5 inches of carrot, an apple, 4-5 inches of cucumber, 1/2 green pepper, and 4-5 inches of "bitter melon", all cleaned, pealed, etc., and blend it with a little water into a pulpy juice.

Drink this within 15 minutes of making it on an empty stomach first thing in the morning.

The ku gua (bitter melon) can be purchased in an Asian grocery or market, and they said using it once a week is okay. They use it every day because it and also kale have beneficial properties for controlling blood sugar.

It's pretty palatable with the apple in it.

Thanks Sherry, i might try this. I don't need it for the C, but I am curious to see what it does for detox.

I couldn't find it (Klinghardt), I had read Sherry's link for the HBOT though.

Can you post the link again if you have it handy? If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.

The one I emailed you earlier?

It's a huge pdf, the one I was asking about yesterday how to copy and paste. It's off of Klinghardt's website, maybe it has been posted before....

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

I'm just keeping up here. Ups and downs... emotionally down a lot. And I'm not on the computer as much as I used to be.

Awww Birdy, sorry you are feelong so down lately. What's going on with you?

Don't be a stranger

[AndreaB 1]

The one I emailed you earlier?

It's a huge pdf, the one I was asking about yesterday how to copy and paste. It's off of Klinghardt's website, maybe it has been posted before....

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

Oooohhhhhh, there it is! I couldn't remember where I had seen the link.

I'll read it later as all of us have monopolized the computer today and hubby needs some computer time.....it's only fair.

[mftnchn 1]

Thanks.

How well did you muscle test for the andographis? How long have you been on them?

Tested really well for the andrographis, both my body and effectiveness against Bb and co-infections. I've been on since Feb.

Ups and downs I have had all along since gluten-free, worse since December.

Sherry

[mftnchn 1]

Sherry, I was just reading a Kinghardt article and he mentioned hyperbaric oxygen therapy (is that HBOT??).

Yes, I'll check tomorrow on the Klinghardt site.

Sherry

[mftnchn 1]

Julie, I think I'll try this morning veggie blend for a few days because today as soon as I took it I had a BM and much more fully emptying than usual. I figure that alone should help the detox. Meanwhile I'll keep you posted if I start feeling better.

Carla, it is a little like a slush in consistency, and rather bland. Wayne says we should add a little honey and it would be good. Since he is not a veggie lover at all, I figure that's a pretty good recommendation.

Sherry

[CarlaB 22]

I had my appt with Dr H... it went really well! He's changing lots of meds, etc. He decided that instead of dancing around with the slow progress (like, VERY slow) we are going to start IV. He said I will need it anyway, so we might as well just get going. I will be working out all the details of getting a Port, etc.

I will type up an update soon and send it out to everyone who I have emails for.

I look forward to receiving it!

Happy Birthday to Morgan!! Sorry about Adam's watch Carla, that was quite the skilled pick pocket to take it right off his wrist Hope you are feeling better.

Very skilled indeed!

Well, I was feeling a little better yesterday .... my fever was down to 99.0. But this morning my regular monthly flare up hit. Yikes. I didn't even go to Mass this morning with the family (I'm hoping to be able to go to 7PM Mass).

I skipped the morning meds, used some glutathione cream, took some Cholestyramine, and need to get enough energy together to do an ecoffee. When the family gets home, I'll ask someone to clean the downstairs tub so I can take an epsom salt bath.

I can't skip evening meds because it's Lariam day. Historically, I've had a bad time when I put off the Lariam. Hopefully my detox day will help me get over this soon. Also, historically, I feel a lot better and my "new med" herx usually ends after my flare.

If it's the link Carla did for Dr. J my computer didn't recognize the program so I didn't get to read it.

The link I posted was a Power Point. If you don't have Power Point, you can't view it. I don't have any way to convert it to anything else. Sorry.

It basicaly says he has found HBOT to be ineffective for his lyme patients, but that's just one opinion I guess.

My doc feels the same way. He'd rather see the money spent elsewhere where he has seen more results.

Tested really well for the andrographis, both my body and effectiveness against Bb and co-infections. I've been on since Feb.

Well, if you tested well, perhaps it's just causing a good die-off.

Carla, it is a little like a slush in consistency, and rather bland. Wayne says we should add a little honey and it would be good. Since he is not a veggie lover at all, I figure that's a pretty good recommendation.

Sherry

Might be good to do for him .... a little local raw honey if you can find it.

It's hard for me to like veggies anymore. For so long I got severe stomach pain from veggies, so I'm kind of conditioned to not like them .. I used to love veggies. I'm working on that.

[confused 1]

Sherry,

Is there anything to subsitute the bitter melon for. I really dont think we have that here. I dont have any asian stores in this little hick town lol.

paula

[Rachel--24 7]

Kassandra,

Glad you had a good appt. yesterday...look forward to hearing about it.

Andrea....I'm so jealous about the pasta!

I cant wait for pasta and garlic bread! I think recently this has become #1 on my list of cravings....even replacing Big Macs!

One other thing that I've been craving ALOT the past few years is cinnamon rolls.....nice big ones like Cinnabon makes. Yum!

Anyways, a couple days ago I saw that Whole Foods started carrying a new line of vegan gluten free foods. They had some cinnamon rolls!! I cant ever have cinnamon because I react strongly to it...and its one of the few that showed up in my bloodtest. For some reason there was no cinnamon listed in the ingredients yet...it still tasted like cinnamon rolls??

Yup...I did buy them and I ate 2 of them as soon as I got home.

Very yummy...but my tummy was rumbling and I can tell by my symptoms that there were too many salicylates (also soy). Next time I'll only eat one at a time.

I had fun at the pool party yesterday. It was up in the hills (Los Altos) where the view is amazing and its just really peaceful (plenty of deer up there though ). The weather was PERFECT...It was really warm, no wind, I was so happy.

I brought my enzymes with me and I had 2 regular hot dogs with buns (no condiments), chips and salsa, bbq'd chicken and potato salad!!

None of it made me feel bad but I did get a runny nose and cough after I ate. My cold is still hanging around (barely) and if I eat anything other than beef and peas I'll end up coughing for a few hours afterwards. Its pretty annoying.

Oh yeah...I got a text from Lisa warning me not to eat too much CAKE!!

That totally cracked me up....fortunately, there was no cake (or any type of baked goods) to tempt me.

[Rachel--24 7]

I had emailed Dr. Amy all the info. about my RBC element test results as well as the results of my last provoked urine test. I was supposed to fax them to her office but I totally forgot since I stayed home from work 5 days out of the past 2 weeks. I got kinda thrown off from my priorities...not that thats anything unusual....but I'm just gonna blame it all on my cold cuz it sounds better.

Anyways, I did tell about my copper numbers on both tests and I mentioned that I wanted to get back on DMPS and if I need mineral IV's I'd like to leave the copper out this time. I told her I wanted to see if the metals will start coming out after copper is brought down.

She reminded me that I still havent sent her my lab results but she said that the amount of copper in my urine is significant. So I'm assuming that its higher than what DMPS would normally be pulling out if copper levels were normal to begin with.

She does want me back on the DMPS IV's and either mineral IV's without copper or no mineral IV's at all. She said zinc is the preferred treatment for bringing the copper down so if I do any IV's they need to have zinc.

Dr. S. also wanted me on zinc and I'm on my 3rd try with oral supplements. It looks like I might be tolerating Kirkman brand....so far so good with the ones I've tried....including the zinc. I think I might also need to do some IV's to help boost up my minerals though. I'm gonna wait until the copper comes down a bit first and then work on getting the rest up to where they need to be.

She wants to have a phone consult with me so I need to send over all my results and then schedule the phone consult.

[elisabet 0]

Rachel,

It is always good to read your posts,they give either information or hope.

thank you.

I like to ask you give me a list of your safe foods.Do you eat yogurt?

Elisabet

[Rachel--24 7]

Rachel,

It is always good to read your posts,they give either information or hope.

thank you.

I like to ask you give me a list of your safe foods.Do you eat yogurt?

Elisabet

Elisabet,

I'm happy to share my experiences and I'm glad you find it helpful.....we can never have too much hope.

I really dont have a safe foods list.....most foods do bother me. My two safest foods are organic grass fed beef and organic frozen peas....that pretty much stays the same and its been that way for a couple years now.

If the beef is not fresh or if I overcook it....then I will react to it. It has to be very fresh and it cannot get browned from cooking.

Everything else is a gamble....depending on how overloaded my system is on any given day, depending on quantity, depending on added ingredients, etc. etc.

I do not tolerate yogurt at all so I dont even try with that one. Some foods are just completely off limits and yogurt as well as ALL fermented foods are not at all tolerated. I avoid them completely. I dont eat anything with vinegar....I dont even try to eat condiments like salad dressings, mayonaise, ketchup or mustard.

I avoid all foods high in sulfur as much as possible and if I do have something with garlic or onion I only eat a small amount. I definately avoid sulfites in processed foods as much as possible.

I avoid all food colorings....no exceptions. I try to avoid anything with preservatives and other chemicals. Only occassionally will I indulge in that stuff.....like yesterday at the pool party. They did have some cookies but I passed them up because they had pink frosting (food dyes).

I try to avoid the high salicylate foods and stick to the Feingold diet as much as possible.

For me its not a matter of finding safe foods anymore (there just arent any). Its more important for me to avoid the ones that I know for sure are very stressful for my body.

Besides the stuff I just listed I know that these are also very problematic for me:

Soy

Whole Grains (possibly because they are high in copper)

Beans

All high phenolic foods (includes chocolate and most fruits)

All nuts

All spices

All herbs

Some of those foods are high in copper and that might be one reason I do poorly with them....spices and herbs are very high in salicylates.

As far as chemicals....I avoid all of these as much as possible.

1. Synthetic colours (or food dyes) I avoid these 100%

2. Artificial flavours: they are petroleum based additives: for instance vanillin or MSG (Monosodium Glutamate) which is found in two forms: naturally in food and as an added flavour enhancer, MSG is used in many processed foods such as stock cubes, soya products, crisps and Chinese food.

3. Anti oxidants and preservatives: BHA (Butylated Hydroxyanisole) BHT (Butylated Hydroxytoluene) TBHQ (Tertiary Butylhydroquinone) which are petroleum based preservatives. I avoid these 100%

4. Salicylates: these natural chemicals found in fruits, vegetables, plants and nuts act as preservatives and insecticides. High levels of salicylates are found in almonds, apples, apricots, berries, cherries, chilli powder, cloves, coffee, cucumbers, currants, grapes and raisins, nectarines, oranges, paprika, peaches, peppers, plums, prunes, tangerines, tea, tomatoes, wine, oil of wintergreen (list from the Feingold Association of the United States). Salicylates are also found in aspirin.

5. Aspartame: an artificial sweetener found in sugar substitutes. While the Food and Drug Administration, which regulates the manufacture of food, drugs and cosmetics in America, states that aspartame is safe, several consumer associations claim that it can cause illnesses including cancer. I avoid this one 100%

6. Nitrites and nitrates: common additives used in processed meat, fish and cheese. I avoid it 100%

7. Benzoates: they are flavourings and preservatives found in margarine, dry soup, salad dressings, condiments, sauces, soft drinks and some liquid medicine. I avoid it 100%

8. Sulfating agents: they are found in corn syrup and are generally used in dried fruits and to keep food white.

The ones that are harder to avoid are salicylates. Sulfites and artificial flavorings such as MSG are also harder to avoid and are present in most processed foods.

[confusedks 1]

I sent out my email update. If anyone didn't get it, let me know. I'm more than happy to send it to you, but PM me with your email address.

[Rachel--24 7]

Kassandra,

Thanks for the update.

It sounds like you had a productive appt. and are moving forward with treatment. Hopefully it'll be what you need to start feeling better.

I had to laugh about the fibro.....I feel the same way.

I cant believe that doctors actually get away with that...it seems almost like a crime to me.

Its like saying "I dont have time to figure out whats wrong with you...so here ya go."

About the genetic component. I'm really hoping its not an issue for me. Dr. Amy and Dr. S. say that it almost always is....but not in EVERY case. Its not too difficult for them to get around the genetic stuff once they know whats missing....but those tests are expensive!!

Amy said that if I had some genetic weakness/predisposition she would have expected some early signs/symptoms....and there werent any in my case...which is unusual.

I'm thinking that I just had too much exposure in a very short time...more than what my body could handle. So my enzymes may have become blocked or dysfunctional due to metals and nutritional imbalances. Still on the fence about the genetic stuff...for now I just know that its not working right!

If the chelation and nutritional support doesnt help get things functioning better I'm gonna have to shell out the $ for genetic testing. I'll probably talk to Amy about that when I have my phone consult.

The other thing is that noone else in my family has symptoms. I notice that in most cases other family members are having some chronic symptoms....but in my family I'm the only one with these problems.

Like you pointed out....I just all of a sudden got hit with this. Amy said thats not usually what happens...usually its a gradual thing with more and more symptoms coming up over a period of years. That why Lyme didnt seem the likely culprit for me because she said most people with chronic lyme and co-infections just dont wake up with everything happening all at once.

I'm praying that things start to improve for me soon though. The sulfur thing makes me feel really toxic and I think that avoiding those foods and supplements has made a huge difference for me as far as how much better I feel now. I'm thinking it will do the same for you...and hopefully make your treatment alot more tolerable.

The sulfur builds up to toxic levels and I know for me that it makes everything else seem alot worse.

I have a really good list of sulfur stuff to avoid....both food and supplements. I know I've posted it before but let me know if you want to see it. I'll be happy to re-post it for you.

[mftnchn 1]

Sherry,

Is there anything to subsitute the bitter melon for. I really dont think we have that here. I dont have any asian stores in this little hick town lol.

paula

Maybe just leave it out; my friend told me using it once a week in the mixture is adequate. When I talk to her next I'll ask about a substitute.

Sherry

[AndreaB 1]

The link I posted was a Power Point. If you don't have Power Point, you can't view it. I don't have any way to convert it to anything else. Sorry.

I think I have powerpoint viewer but I'll have to look.

Sorry about you having to miss Mass this morning.

Rachel,

I'm glad you were able to go to the pool party and have a good time. I'll look forward to your phone consult update when you have it.

Kassandra,

I got your email. Thank you. Hope everything goes smoothly with everything.

[mftnchn 1]

My doc feels the same way. He'd rather see the money spent elsewhere where he has seen more results.

Hmm, sounds like it isn't the best option. I read it helps but only temporarily. Bummer, was hoping for another option.

Sherry

[confusedks 1]

Rachel,

Yea, I agree with everything you said about genetics, etc. My mom and I are going to sit down tomorrow and figure out where exactly we are going to spend money (IV, home health care, genetic testing, food testing, etc.) If I do have this test done, I will definitely email you the results though, if you're interested.

And if you could re-post that list of sulfur foods, I would REALLY appreciate it! Dr H will fax me some stuff about it, but I'd love to get as much info as possible. When I google it...it's really hard to sort through everything! It's like when you first go gluten free, you think about how many foods you have to get rid of, and it scares you!

Also, I took a sulfur test strip today and it was lower!!!!! I don't have any idea why, but I was so excited!!!

Everyone,

So I realized today that I'm going to be having surgery this week! (Assuming everything goes as planned...) It hasn't hit me yet, but woah! I'm kinda trying to not think about it, but I've never been under general anesthesia before. I've had local, but not general...ahhh!!!