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Rachel--24

Omg...i Might Be On To Something

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Sherry,

Do you ever recall Naittokinase keeping you up at night? My bottle says to take it before bed but each time I do- I can't sleep! Its wierd. I think I'll try it in the AM instead.

April

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Sherry,

Glad to hear you are ok. That quake sounds pretty devastating. :(

Rinne,

WooHoo!!! :D Congrats on the Rinne bar sale. Glad to hear you are doing well and able to work as much as you are.

I forget if I had anything else to say. :lol:

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Guest LittleMissAllergy
Yea, breathing is hard. Apparently it's air hunger though. I asked my LLMD about asthma and he said that it probably isn't asthma, it's probably bad air hunger because we lowered the dose of my mepron.

You can definitely herx after a couple days. Some people it takes longer, but some people it takes only a couple days. When I started flagyl last week, I started herxing REALLY hard the next day! So...it's possible.

And the nausea then starving thing...I totally get that too! I can go from "move out of my way I'm going to puke" to "move out of my way, I need to eat all the food in the fridge" in two seconds! It's really hard to deal with that, because I get really hungry, then I don't think I need to bring food with me if I'm going somewhere, but then I'm SO hungry. Very frustrating indeed. ;)

My air hunger is really bad today :( How are you doing? Is yours any better? My heart feels funny too and I just feel weak. Icky.

And the actual hunger we were talking about...the hunger pain...definitely don't have it today. lol. I've got the nausea and the feeling like I have to go to the bathroom a lot but I really don't (sorry, TMI). I'm kind of paranoid that I'm going to lose more weight. That would NOT be good...

Anyone else struggle with their weight? I think I remember some of you mentioning it.

Four days is a very common point to herx from a new med. It seems to be the magic number .... many on LN mention 4 days, and the past couple meds I've been on caused me to herx at exactly four days.

No, I hate it. It's from babesia ..... were you diagnosed with babs? Babs treatment is what helps it clear up. I had a little shortness of breath that cleared with bartonella treatment, but the severe air hunger went away with babs treatment.

Well, I haven't done any tests for babesia but my LLMD thinks I have it. He's like 90% sure. I'm impressed that you can distinguish the shortness of breath from the air hunger...lol! I have a hard time telling which is happening to me. I know I get both though.

Okay everyone...so I have a predicament. I think I'm herxing a bit right now, just on the two Biaxin, and my doctor thinks that I should start doxy tomorrow. That in itself makes me nervous enough, but on top of it it's going to be 90-100 degrees here for a few days, and I'm so worried that's going to make it SO much worse. I want to wait until monday to start BUT...you know that week of every month that lyme patients are supposed to feel worse? Well if I start on monday, I'll be starting on that week. If I start to herx worse on top of that...I think that's almost kind of dangerous! So I'm in a pickle. Anyone have any advice?

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Anyone else struggle with their weight? I think I remember some of you mentioning it.

I used to.

I'm impressed that you can distinguish the shortness of breath from the air hunger...lol! I have a hard time telling which is happening to me. I know I get both though.

That's only because the horrible air hunger went away with babs treatment, but I'd still get short of breath .... but it wasn't like I couldn't get a full breath, it was just being short of breath (if that makes sense, LOL). The shortness of breath went away with bart treatment.

So, it was only in hindsight that I could tell the difference. I knew the air hunger had improved significantly, but I was still having breathing problems.

Okay everyone...so I have a predicament. I think I'm herxing a bit right now, just on the two Biaxin, and my doctor thinks that I should start doxy tomorrow. That in itself makes me nervous enough, but on top of it it's going to be 90-100 degrees here for a few days, and I'm so worried that's going to make it SO much worse. I want to wait until monday to start BUT...you know that week of every month that lyme patients are supposed to feel worse? Well if I start on monday, I'll be starting on that week. If I start to herx worse on top of that...I think that's almost kind of dangerous! So I'm in a pickle. Anyone have any advice?

I'd go ahead and start it. You will probably have a tough week next week, but it's going to be tough anyway. Drink lots of water to flush it out, plan on lots of rest. You can always ramp up on the doxy.

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miamia, I'm so glad you are doing ok with introducing some different things into your diet :) That's definitely a step in the right direction for you!

Sherry, I am relieved to hear you are ok. When I saw on the news about the earthquake in China I immediately thought of you.

rinne, congrats on the rinne bar sales!! What you are doing is such hard work (I know because some of my family are in the restaurant business and they are worn out, even with help!) I am glad you are finding it to be so rewarding. I hope you are able to find some good help very soon to take some of the work load off of just you.

Kassandra, I also have issues with my throat and swallowing (not just food but supplements). I have a narrow opening as it is, and then scar tissue from reflux I believe, and my throat tends to swell up, which doesn't help.

Paula, sorry to hear you are in that weird place. I've been there many times too. The good thing is it does pass, I hope it does for you soon.

Little Miss, do you mean keeping weight on or keeping weight off?

Welcome Moonstone, Rachel was the one who took ketofin. As far as I remember she was on and off of it a couple different times and had success with it. She'll be on sooner or later to confirm.

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i have a question for you rachel (or anybody else that may know)

i was looking in an older post and you mentioned a test: "Genetic testing of detox pathways to identify glutathione or methylation defects, among others"

would you happen to know what/where i could get a test for this?

I have not had any genetic testing done yet and I'm not all that familair with the tests. I do know that there are various labs that offer these tests...I dont know which one I would recommend because I've never looked into it.

The test is expensive....it will probably be a "next step" for me if I continue to have problems excreting metals after these next couple rounds of chelation. My Dr. would know about the tests but its not something we're looking at just yet.

Heres a couple links that might be helpful.

http://www.encyclopedia.com/doc/1G1-140490456.html

http://www.center4autism.org/therapyMETH.asp

hey everyone

HEy rachel I was meaning to ask you, what type of digestive enzyme do you take and trace minerals? Can you get them over the net?

The only digestive enzymes that have tested well for me and that I've actually done well on are No-Fenol and AFP Peptizyde. I ordered them online.

http://houstonzymes.com/mm5/merchant.mvc?S...tegory_Code=Enz

I'm not taking any multi-minerals or Nutramedix Trace minerals because I kept reacting. Also they all contain copper and my copper is elevated....so I'm working on bringing that down. I hadnt tolerated any oral minerals and my last attempt was Kirkman's....which I ordered online.

They offer trial sizes and I'm actually tolerating them...I plan on ordering all of them so that I dont have to go back to IV's for the trace minerals. They are very hypoallergenic. The only oral minerals I've done well with so far.

http://www.kirkmanlabs.com/

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im actually handling some of the foods its crazy I went from being able to tolerate nothing to being able to tolerate weird stuff but I am still uncomfortable but the thing is no more form these foods than really safe foods so I kind of figure why not go for it

Mia....I know the feeling!! I do MUCH better with avoiding the "healthy" foods. I still have to really scrutinize ingredients but I'm able to eat some things I can actually ENJOY. Th beef and peas was getting really old...so this feels pretty good. :)

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Rachel, this is a question for you, and anyone else who might have some info on ketotifen. I'm new to this forum, so I hope I'm not posting in the wrong place? I read some of your posts over the last few years, and I feel like I can totally relate to you!

I am gluten intolerant and chemically sensitive, (although my official dx is crohn's disease), and I am trying to find any info from people who have tried the ketotifen, what their experience with it has been. Did it help you at all? Did you find it to have any major side effects?

What a wonderful site, I wish I had found it sooner! I've sure enjoyed reading as many posts as I could this evening!

Hi Moonstone....welcome to the board. :)

The only side effect from the Ketotifen was drowsiness. It can really knock me out in the first few days...after that the drowsiness isnt an issue. When you first start it...its better to take a low dose and work up...to avoid the drowsiness. Also start out with only taking it at night the first few days.

I've been on it a few times and I always forget to start slow and at night....and then I end up crashing out during the day. :rolleyes:

Other than getting really sleepy the first couple days I also notice an increase in appetite. I'm always trying to gain weight so this side effect doesnt bother me at all. :)

I think it does help but since I still have underlying issues (that I'm still treating) its not gonna make a HUGE difference in my situation. In other words all my problems arent going to resolve simply by taking the Ketotefin....but its definately something that will help...along with the other things I'm doing.

I do feel that its good for reducing inflammation in the gut.....it does promote healing. How far it can take you probably depends on how many factors are involved. For example if gluten is the main cause of inflammtion....along with the diet Ketotifen can help speed up the healing process. However, if there are multiple issues contributing to the inflammation and those issues are not resolved...I dont believe the Ketotifen can heal the gut all on its own.

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Sherry,

Do you ever recall Naittokinase keeping you up at night? My bottle says to take it before bed but each time I do- I can't sleep! Its wierd. I think I'll try it in the AM instead.

April

No I haven't had this problem, but I don't take mine in the evening. Although, this could be why I have had trouble sleeping just lately, as I have gotten lax on my schedule and ended up taking some in the evening.

I take mine between meals: between breakfast and lunch, and lunch and dinner on an empty stomach.

Sherry

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Sherry,

Glad to hear you are ok. That quake sounds pretty devastating. :(

Yes, very. I was in a 7.3 in '99 and it was a horrible experience. This is much worse. I have friends there, they are currently out working on a 36 hour shift. (he's a vet, she's a nurse).

It is bringing back a lot of memories for me of what we went through in '99.

I see the death toll has topped 12,000; the school children who were buried alive is the most horrible situation. The death toll would have been worse perhaps at a different time of day, many people were outside and thus safer.

Sherry

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Guest LittleMissAllergy

Oh gosh you guys, today is the day I'm supposed to start the doxy...im so nervous! It already 80 degrees out and its 7:30 in the morning...and we've got no air conditioning! I also woke up with an even MORE swollen spleen and now I've got pain on the right side of my ribcage too! Isn't that my liver? And these heart palpitations are no fun...

Gosh, to do this or not to do this....

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Where do you live that it's so warm already? You don't have any air conditioning? That would be very difficult to be sick in that heat. Is there somewhere else you can go?

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Oh gosh you guys, today is the day I'm supposed to start the doxy...im so nervous! It already 80 degrees out and its 7:30 in the morning...and we've got no air conditioning! I also woke up with an even MORE swollen spleen and now I've got pain on the right side of my ribcage too! Isn't that my liver? And these heart palpitations are no fun...

Gosh, to do this or not to do this....

Could you wait a few days and let your body deal with what it has stirred up already?

Have you tried an epsom salt bath? That might help get some toxins out and take the work off the liver and kidneys.

My gallbladder/liver area has bothered me before and it is on the right side of the ribcage area.

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Guest LittleMissAllergy

Thanks for the reply everyone. Carla, I live in California. I guess if I DO take the doxy I could go to the grocery store or the library, where there's air if I just can't take it anymore..

Hi aprilh, thanks for responding :) I actually did take an epsom salt/baking soda bath last night and it DID make my spleen and liver feel better for a little while. I'm just wondering if it's smart to start doxy when my liver hurts...is that normal or even something to be concerned about?

It's hard with lyme because the symptoms and side effects are so severe, it's hard to know what to push through and what to be alarmed about.

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Well, the grocery store or library, or even a movie is a short term answer .... the thing is, summer hasn't even started! Can you get a window unit or something so that you're more comfortable as you go through this?

I would call your LLMD about starting the meds if you think your liver is bothering you.

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Guest LittleMissAllergy

I took your advice you guys, thank you very much for helping me :)

I called my LLMD and I'm going in today for blood work (and im going tomorrow for an IV, and Friday for an appointment! This is exhausting!), just to see how my organs are doing with this. He said though that he truly believes that its the lyme bothering my spleen and liver, not the antibiotics. He said that if I feel comfortable, start with just have the dose of doxy today. He said if it made me feel better though, I could wait until Friday when we get the blood results back, but then I'll be starting it on the weekend when he's not in his office, so it's kind of a catch 22.

So I think I might start it....have you guys taken doxy before? I'm just wondering what to expect.

Gosh, I'm so thankful to have you guys right now.

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I started doxy three weeks ago. I have had intermittent fevers since starting it and have felt very tired. It's not like it was early in treatment when I had pain, but I'm pretty useless from the fatigue, most likely due to the fevers.

I have a phone consult today, so I'll be asking about it then.

Take it with food to avoid stomach problems. Don't lie down for a while afterward. Avoid the sun. I have to wear gloves when I drive or I get blisters on my hands .... it's not like a sunburn, it's more like sun poisoning. I got a little red through a white shirt after spending an hour at a softball game last weekend. It can make you VERY sun sensitive.

I'm glad you called your LLMD .... better safe than sorry.

My appt. is at 3, so I'll update you all then. Chloe has an appt. too.

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Guest LittleMissAllergy

Thanks for the advice Carla, all good to know. I took it and walked (for some reason my LLMD likes me to walk on the treadmill after I take Biaxin and Doxy, he says it helps with detox) and all seems to be okay...so far.

I'm looking forward to hearing about your appointment!

Kassandra, northern California :) How about you? That's exciting!

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I just had my phone consult. We changed a lot around. She is thinking that since I'm not feeling better with the bart treatment that we'll go back to babs treatment. She feels that it's more of a Lyme/babs problem, so we're also going after the Lyme more aggressively. I have been on babs treatment all along, but we're going back to the yellow paint. If you want the drug list, let me know, I wasn't planning on sending out a more detailed update (they seem so repetative, LOL, it was more exciting the beginning of treatment).

She was concerned about Chloe's flare of knee pain and headaches when she had the flu, but that it's not time to put her back on abx. Chloe is still doing full Cowden, so she wants her to add Enula to treat any babesia that there might be. She felt that Chloe is doing fine on this regimen, but if she were to get worse then we'd get her back on meds. Flaring during an illness shows that it's still there.

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Thanks for the update Carla. Hope the switch around works for you and that the additional Cowden helps Chloe. :)

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Updates:

I'm going to be taking an antibiotic and an antifungal for the parasite/infection they found for 14 days. I picked up Tindamax today, but the other one has to be ordered from some pharmacy in Washington...I should get that Friday. I have to take both at the same time. The parasite is blastocystis...I hope it's slow at work tomorrow so I can look all this stuff up. The Klebsiella is also back, but my doctor said that it's nothing to worry about. She said it's more of a side effect from the other infection. Kleb is present all the time I guess but the other infection has thrown everything out of balance. After I've done the two meds, I'm supposed to take lots of probiotics, then we'll retest to make sure it's gone.

My neurotransmitters are still out of balance, with the excitatory ones being really active, lol. We're tweaking the stuff I'm taking, plus I've got two more things that she added today.

I got my labs back from last week. Everything is pretty normal except a couple of things...my lymphocytes are low again. They were low last year too.

My B12 was off the charts, lol, so she suggested I stop the injections, as did the doctor I saw today. Of course I have to run this by Dr. S to see what he says, but I have to admit I'm NOT sad about stopping them, lol.

My creatinine was at the lowest number of the low range...the doctor I saw today didn't think that was anything to be concerned about.

The only other thing out of range was Neutrophil...it was high.

My cholesterol was good...the "ratio" that they use to determine risk was 2.9 where anything less than 3.5 is a low risk for heart problems.

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Donna, what's the other med you will be taking?

Be careful with the Tindamax .... it goes after the Lyme. It was the one that really knocked me on my butt.

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