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Rachel--24

Omg...i Might Be On To Something

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Ok..I got my baby pic up but I couldnt change my avatar....kept getting an error message?? :huh:

I had to use my personal pic.

I wanted to put up two pics but cant because of the avatar problem. Donna didnt this happen to you?? I get some kind of warning message. :unsure:

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Rachel--Your baby picture is so cute :D

I get that warning message if the picture is too big--it drives me crazy. I just keep cropping off small amounts until it takes it.

Thanks Patti...I was able to change my avatar...so now I've got 2 pics up. :)

I actually wasnt even able to access the page to change my avatar....it was a bunch of computer jargon...like what you see when the board goes down. :rolleyes:

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Although day to day, I don't see a lot of a noticeable difference, over time (I've been on Omnicef and IVs for two months now), I have seen a difference. My weight is pretty stable, around 104-106 (although it did peak at 109 at one point!!!) I can eat food pretty normal, except for gluten and eggs (even though I tested normal for eggs, I know I can't tolerate it!). My energy is better, but I still get knocked down pretty hard when I apparently overdo it. This was my first flare in a week and a half or so, so it doesn't surprise me. I would say I am on a steady, but gradual, incline!

Thanks so much for the update Laura. I've been wondering how you have been doing as you haven't been posting too much.

Sounds like, overall, things are going well. Those IV's sound painful. :(

Yay on your bilirubin/liver enzyme levels! Also yay, on your weight gain.

Please let us know what the upcoming tests say. I'll be curious about your C_D 57 test if you have that done as well.

Love the new pic. :)

Okay, loaded a slightly different picture of me and my boyfriend Timmy, lol...I actually have a little tinsy hint of a smile. :lol:

Cute!

I tell ya--I go nowhere without my own water ;)

Boy, I wouldn't either! Actually, I don't. We use a filter (which you couldn't do) and I take my water with me everywhere.....including restaurants (which we don't eat at anymore).

When is your appointment this coming week?

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Didn't she have bull's eye rashes? I think she did ... in that case, she does have Lyme unless they were treated immediately for a month or so, even then, it still could be Lyme because that doesn't always work.

Yes, she had 4 bull's eye rashes and was treated but I don't know how long. I'm thinking something is still lurking in her body.

Ok..I got my baby pic up but I couldnt change my avatar....kept getting an error message?? :huh:

I had to use my personal pic.

I wanted to put up two pics but cant because of the avatar problem. Donna didnt this happen to you?? I get some kind of warning message. :unsure:

Cute, and Cute! We get to see you without a hat!

As far as changing the avatar I always get a bunch of garblygook but just scroll down the page and I'm able to change it......if it's not too big.

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Thanks Patti...I was able to change my avatar...so now I've got 2 pics up. :)

I actually wasnt even able to access the page to change my avatar....it was a bunch of computer jargon...like what you see when the board goes down. :rolleyes:

I see it now :) --had to hit refresh....

That jargon--I get it now, too. I find I have to scroll down, and the regular page is there. Strange :unsure:

Boy, I wouldn't either! Actually, I don't. We use a filter (which you couldn't do) and I take my water with me everywhere.....including restaurants (which we don't eat at anymore).

When is your appointment this coming week?

I learned my lesson--I thought I'd get something different for a change. <_< I should know better than to stray from my "safe" foods....but jeepers--water??? :o

My appt is May 11th. I'm not holding out much hope that I'll learn anything new--I did ask on the phone if he would discuss food intolerance with me, and they said that he would. We shall see.

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The good news with many LLMDs is that they don't "just" look for Lyme...they look for other infections, etc that could be causing problems. I was positive for other non-co-infections, and part of my treatment includes fixing those problems.

Good point Laura, its really important to not overlook things which could be huge factors along with Lyme. Some of them need to be treated in order to be completely successful with Lyme treatment. Unfortunately....I dont think with chronic Lyme there is ever a person who *just* has Lyme.

My bilirubin (liver) levels have been elevated since my pre-celiac diagnosis, with no explanation why. In recent months, it began rising again. This latest round of bloodwork reported that it dropped to WELL within normal ranges...not even "high" normal, but right smack dab in the middle of normal. Considering that it has been high for at 3+ years (I went through my records and they were all elevated), I was really excited about it!!!

This is AWESOME!! :)

Laura.....thats really exciting news...looks like you're making good progress!!! Its so great to hear about improvements. Little by little we're all going to be reporting our triumphs. ;)

The weight gain...eating more foods...all I can say is YAY!! :D

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This is encouraging! I'm sort of glad he thinks this way. I think I wouldn't be comfortable if he JUST treated me on the basis of what ART or BioSET said, but I'm glad he considers them and considers them in relation to the treatments. Did that make sense?! :lol:

Donna it makes sense to me. ;)

Yeah...Dr. S is very big on testing. He doesnt like to guess at stuff...he seems to like to get all the tests in and get a picture of whats going on. He can then use the results of the other methods to try and tie it all in....especially when test results are questionable...like my Western Blots were.

So are you getting the CD57?? :lol:

Yup. :D

As soon as I mentioned CD57 he was already ordering the test before I could even finish my sentence. :lol:

He said "Excellent...certainly we'll get that done...I would LOVE to see those results." So yeah...he clearly likes that test. :lol:

I asked him if it correlates well with Lyme....he said that it does...it really is a good indicator of where things are at.

The thing that sucks is that since I've changed my appt's from Mondays to Fridays any blood work that he orders cant be done...all bloodwork needs to be done in the beginning of the week. I had to schedule for Tuesday.

I wont be sceduling my appt.s on Friday anymore because of this.

He said the results for CD57 are quick....he'll have it back in 5 days. So yours should be in sometime next week....and then mine the following week. :)

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I can't wait to see your guyses results for the CD57.

I suppose we won't find out till the next scheduled appointments?

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My appt. yesterday...

It was a good visit but I'll tell you this much...he is NOT willing to give me the challenge test. We talked about it alot but the answer was NO at the beginning of the conversation...and NO at the middle...and still NO in the end. :o Sooooo...I'm not taking the test. :huh:

Sheeeesh...my Dr. is strict!! :blink:

He said what happened after I took 6 drops of NDF...and what happened after I took the sauna are both good examples of why he wont do it. He said those are "setbacks". If I have to miss days of work because I released to much toxins into my system....then thats a setback...which he doesnt want.

He said that some people get bad reactions to the chelators and there is no doubt in his mind that I fall in that category. He said I will feel very bad afterward and I'm not ready to be putting that stuff in my body just yet.

I told him that Denise said I'm not too toxic to just do the test...she said I'm not any different from other people going through the same thing.

He said everyones different and I'm an extremely sensitive individual and he's certain I'll react.... so no...he wont do it yet.

I told him I went to 6 drops of NDF and got pretty depressed and symptomatic. He couldnt believe I'd taken 6 drops. :ph34r:

I told him Anna said I tested for 3 drops twice a day but she never felt I'd be taking even near that much. He said 3 drops is ALOT...and if I can take 3 drops without having to miss work and without getting worse he would be very happy with that....and he would be content to leave me on that dose.

He said if I come back in two months and I'm taking the drops without symptoms and I'm "stable" then he has no problem giving the test. We'll do it then.

He said if I can tolerate the drops I could stay on NDF at that dose for a year and be alot better without having setbacks. I told him I didnt want to stay on NDF that long because it moves slow!!! :(

He said we dont want to go fast...he's had people who have had setbacks which have lasted MONTHS because they went too fast. He said hes learned that fast is not the way to go with this.

He said if I was some healthy 200 lb. guy then fine...he could do plenty of DMPS and not worry about it....but he said I'm not either of those things and I'm too fragile. :(

I asked him if I could be any better after taking NDF for a year....he said I could be alot better as long as we move forward...slow and steady and not having setbacks.

Also treating Babesia is important as far as detoxing the metals. He said with Babesia my body is not gonna rid itself of mercury very easily. He said the most important thing is for my body to start detoxing...in order for that to happen successfully we have to stay on top of the Babeisa, the Lyme and the Candida.

I told him Amy said that I need to get rid of the metals with something stronger than NDF. He asked what she would like to use?? I said she didnt say specifally but probably DMPS.

He said most definately later on he wants me doing IV DMPS...but not until he feels I'm ready. I told him my fears about it....the stories of "backfiring" and people getting worse, etc. I told him I heard of people getting permant damage because they reacted to it...mobilized more than they could excrete. :unsure:

He said....yes...some people do react to it...and I would be one of them. You can get major setbacks if your body's not ready or if the dose is too high, etc. He said they're doing more than 100 chelations every month....and he's been doing it for a whole lot of years.

He said he's seen people have setbacks which have prevented them from working for weeks or even months. He said people can get very sick but he has never had a patient in all these years who's suffered permanant damage from chelation. It can make you feel very badly though and this is what he wants to avoid....he said hes learned from his experience that you get better sooner if you go slow and dont overdo things.

When I told him how I threw up after the sauna he asked how long I took it for. I said 30 minutes. I know Anna had said to do 15 minutes but it was Amy (the receptionist) who had set it up for 30 minutes. I didnt think too much of it....30 minutes is what you get for $20.

Anyways...my doc was not happy about this at all. :huh:

He said no way should I have been in there for that long just starting out. He said only 5 minutes!! :blink:

He said just like with anything else its a gradual increase and 30 minutes is WAY too much. He said he wants me to talk to Anna about maybe getting half price if I'm not taking the full 30 minutes.

He said its no different from other methods of detox..if I cant handle alot of NDF...I'm not gonna handle alot of sauna either. Also...it all has a cumulative effect...so if I'm on NDF....plus supplements...plus sauna...its all adding up and can easily be too much.

He still wants me to do the sauna starting at 5 minutes but on the days I do the sauna I should not take NDF.

He said I vomited because I was doing too much too fast. I didnt even mention the gobs of chlorella I'd been taking all week prior to that. :ph34r:

He said unless I wanna have episodes of vomiting, worse chemical and food sensitivities, worse problems from yeast, more sickness and worse symptoms...I'll go slow.

Ummmm...I think I will follow his advice. ;)

He wants me on Nystatin everyday. He wants me to keep increasing my Cats Claw for the Lyme. He wants my BioSET treatments focused on keeping my pathways open, detoxification, b12 methylation and nothing else. He said I dont need any of the "fancy" stuff....just these issues.

I did tell Denise that I did not want to do foods the other day...I explained to him what she said. He said he knows they have their way of doing things but he really wants the focus to be on my pathways. I see Anna on Wednesday so I'll have to talk to her about it.

In the end I said "OH MAN...I really thought I could start getting on a stronger chelator and start getting the metals out and getting better in 6-12 months!!!"

He kind of laughed and said he loved my enthusiasm....but ummmm...no...its not gonna happen that way. He said if people think I could just get on DMPS right now and start detoxing that easily then he thinks they're dreaming. :huh:

So yeah...we have to do the slower approach for awhile but I can still be tons better in a year. He kept telling me that he knows I really wanna do alot of things to detox and to get better and feel normal again but this is something that is not dealt with quickly. It takes time and I'll probably be doing this for at least a year.

To him a year may seem long but to me its not. If I got alot better in a years time I would be extremely happy. :D

I'm sure there was more we discussed but that was the gist of it. I'll see him in 2 months and I'm gonna

work really hard to stick to the rules of going slow and taking small doses of things instead of getting carried away. :)

I go back on Tuesday for my CD57 and he also wanted bloodwork for my kidneys and liver to make sure everything ok with that. I havent been tested since I left Kaiser.

He asked me if I was still eating ice cream and this time he was very happy with my response. :D

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I agree with him--slow and steady ;) I know it's been a long time coming, but you're on the right track now--take a deep breath and slow down :lol: No more Racheling the sauna or the chorella or anything. This time next year, you're gonna be a new woman! :D

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Sheeeesh...my Dr. is strict!! :blink:

Your doctor makes a lot of sense to me. I'm glad he's strict so you don't have alot of setbacks.

We will hold you accountable if you let us. A little more difficult since we don't actually see you. Hm, maybe you ought to print the last post out and give it to Michelle. I know she'll keep you accountable or have your hide for it. :P

I agree with him--slow and steady ;) I know it's been a long time coming, but you're on the right track now--take a deep breath and slow down :lol: No more Racheling the sauna or the chorella or anything. This time next year, you're gonna be a new woman! :D

Ditto!

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I agree with him--slow and steady ;) I know it's been a long time coming, but you're on the right track now--take a deep breath and slow down :lol: No more Racheling the sauna or the chorella or anything. This time next year, you're gonna be a new woman! :D

Patti...I know everything is so true and I really need to get the racheling thing under control. :ph34r: I think my experiences with the setbacks (even though they werent long lasting) definately puts things in perspective. I dont like having increased sensitivities, real bad headaches, eye problems...and worst of all depression.

The vomiting episode was nothing compared to some of the other things. :(

The week that I took all that chlorella was bad for me. My eyes were pretty blurry and I was having migraine type headaches. Every single morning that week I wanted to call in sick really bad...and I wanted to be on disability again. I was hardly posting...and going to bed hecka early every night. :blink:

Then I went to the sauna. :o

This past week I'm just taking my normal stuff and at the right doses and I've been fine everyday....no depression and plenty of energy at work. :D

Its so crazy how things can be so different based on one thing I might be overdoing. :blink:

I hope I'll be sooo much better by Xmas this year. :)

I wont rachel my treatments at all anymore. ;)

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:lol: Rachel DOESN'T want to do foods and I DO and can't, lol. I thought for sure we were starting foods today because we did the wheat panel last week. NOOOOOOOOO!!!! We did mycoplasma. What the heck is mycoplasma, lol. Susan said it's bacterias etc, etc. I said we already did those I want food. :lol: She said no, we did mytoxins. :P Bummer! Anyway, I reacted to somewhere between 1/4 to 1/2 of the vials...BUT, they are affecting a lot of stuff. A LOT of my organs are being affected by them. Uterus and fibroids came up again as did the ileocecal valve. She commented that the fibroids and uterus keep coming up so she's going to ask Anna about that...I haven't had either since 2001. I said that me me wonder if the fibroids were caused by whatever "bacteria" is lurking around...the look on her face said that could be a possibility.

My energy and brain reading was higher today but the brain reading wouldn't hold. It needs to hold in order for my body to accept the treament...she checked to see why it wasn't holding and it was the same ole story...rest and water. I can't figure out the water part because I drink a lot of water, but I guess not enough...I had already had 2 16 oz bottles before I went and another glass at home!

Anyway, I'd like to hope that next week is foods, but at this rate I won't hold my breath! :lol:

I have Lyme green nail polish. :lol: Seriously.

How fun!!

Ok..I got my baby pic up but I couldnt change my avatar....kept getting an error message?? :huh:

I had to use my personal pic.

I wanted to put up two pics but cant because of the avatar problem. Donna didnt this happen to you?? I get some kind of warning message. :unsure:

I see you got the problem solved, lol. OMGosh, how cute are those pictures...in the one on your personal page your smile is exactly like your normal avatar picture. :P

He said the results for CD57 are quick....he'll have it back in 5 days. So yours should be in sometime next week....and then mine the following week.

Ha, well if you're going on Tuesdays we might run into one another one day. :P I have a followup for Tuesday the 15th (I think that's the tuesday)...do they call you with results or do you just wait to see him?

The lab that's doing the testing for molds called (not for results though...they needed my insurance info) me Thursday I think...I hope they're quick too.

It was a good visit but I'll tell you this much...he is NOT willing to give me the challenge test. We talked about it alot but the answer was NO at the beginning of the conversation...and NO at the middle...and still NO in the end. :o Sooooo...I'm not taking the test.

Sheeeesh...my Dr. is strict!!

I think I like this about him, lol. So many doctors just either don't pay attention to you at all or just do whatever you want. I like that he is careful. I think in the end this is going to be so healthy for you even if you have to wait a bit longer.

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Rachel, slow and steady is the way to go. As you go along you will get better and better, too, as the stuff you're doing now starts doing its job.

Thirty minutes is a lot to start off with in the sauna. I take an hour, but I increased to there gradually and some days I can only do 30 minutes. You have to pay attention to how you feel. Some days I get queasy (not nauseous) and lightheaded and cut it short. I always have to sit for a few minutes before I can shower. During the bad part of a herx, the thought of a sauna bothers me, yet towards the end of a herx, I feel better after a sauna.

What is he giving you for the babesia? Is tonic water mild enough on the quinine that you can handle it? What about Artemisia? I drank tonic when we were in Phoenix ... I had to get off the meds for a few days due to GI symptoms, but wanted to be doing something against babs. Tonic does not have a therapeutic amount of quinine, but it's got to be better than nothing, right?

I added in cardio today ... 15 minutes of elliptical. I always felt better when I was doing cardio, so I was in a hurry to add it back in. So far, so good. Last time I tried I did 45 minutes and felt bad the rest of the day. I guess it stirs things up.

Patti, I read the thread about Bell's Palsy ... I had to control myself from bringing up Lyme in yet another thread, but I'm comfortable mentioning here ... that's a sign of Lyme .... so is muscle twitching, etc. Maybe you should be tested ... but then again, if it's gone away, who knows?

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Patti,

I like your new picture. :)

Me too!!! Thats an adorable pic. :)

Its so funny because my monitor at home is old so the pictures are much clearer at my Moms but right now when I look at Pattis pic it totally reminds me of Donna!! :lol:

Its the eyes....they have that same look I see in Donnas pics...too funny. :lol:

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I love all the old pictures. After I shower (just took a sauna), I'll have to hunt down the scanner. Adam is always switching around electronics between home and office.

I have a picture of myself at 5 wearing a new raincoat. I remember modeling for the camera like it was yesterday! I was cute and totally knew it! :lol:

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:lol: Rachel DOESN'T want to do foods and I DO and can't, lol. I thought for sure we were starting foods today because we did the wheat panel last week. NOOOOOOOOO!!!! We did mycoplasma. What the heck is mycoplasma, lol. Susan said it's bacterias etc, etc. I said we already did those I want food. :lol: She said no, we did mytoxins. :P Bummer! Anyway, I reacted to somewhere between 1/4 to 1/2 of the vials...BUT, they are affecting a lot of stuff. A LOT of my organs are being affected by them. Uterus and fibroids came up again as did the ileocecal valve. She commented that the fibroids and uterus keep coming up so she's going to ask Anna about that...I haven't had either since 2001. I said that me me wonder if the fibroids were caused by whatever "bacteria" is lurking around...the look on her face said that could be a possibility.

I don't know what mycoplasma is. I'll be waiting to see what Anna has to say about uterus and fibroids coming up frequently. :huh:

Carla,

I'm glad you are able to add some cardio back in. That's so great that you have been feeling well enough to do that!

New avatar and me and one of my best buddies. This was the summer before my senior year.

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Speaking of pics...new one. Me and Timmy (of course, he WAS my boyfriend afterall), but I'm letting the bird out and he's having no part of it. :lol: There's another picture somewhere of the bird sitting on top of the curtain rods. :P By-the-way, I did NOT give him the black eye. :P

Its the eyes....they have that same look I see in Donnas pics...too funny. :lol:

No, mine is more like "deer-in-the-headlights", hers is much cuter, lol.

I have a picture of myself at 5 wearing a new raincoat. I remember modeling for the camera like it was yesterday! I was cute and totally knew it! :lol:

Can't wait, lol!

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Patti...I know everything is so true and I really need to get the racheling thing under control. :ph34r: I think my experiences with the setbacks (even though they werent long lasting) definately puts things in perspective. I dont like having increased sensitivities, real bad headaches, eye problems...and worst of all depression.

The vomiting episode was nothing compared to some of the other things. :(

The week that I took all that chlorella was bad for me. My eyes were pretty blurry and I was having migraine type headaches. Every single morning that week I wanted to call in sick really bad...and I wanted to be on disability again. I was hardly posting...and going to bed hecka early every night. :blink:

Then I went to the sauna. :o

This past week I'm just taking my normal stuff and at the right doses and I've been fine everyday....no depression and plenty of energy at work. :D

Its so crazy how things can be so different based on one thing I might be overdoing. :blink:

I hope I'll be sooo much better by Xmas this year. :)

I wont rachel my treatments at all anymore. ;)

And you know, I really understand. When something is helpful, it's quite normal to think that more must be better or faster.

It's like when the ground is really dry and parched from lack of rain. If it were to pour really hard, most of the water, no matter how much it rained, would just hit the surface and then run right off--not really doing much good. A lighter, steader rain will soak in and make much better use of the water.

Think of it that way--giving yourself what you need, in the proper amounts and steadily will pay off in the end.

Hang on a bit longer--and have faith :) Considering how long you've dealt with all this--Christmas isn't all that far away ;)

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Carla,

Now you got my curiosity picked with the Bells Palsy. Which thread is that?

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Andrea, It's the thread about facial numbness.

Carla--I still have it, only it comes and goes. :unsure: All the rest of the tingling and numbness went away gradually after going gluten-free, but the left side of my face never completely resolved. I didn't realize that was a Lyme symptom, too.

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