Omg...i Might Be On To Something

[jerseyangel]

Nice new picture, Donna. You get to some really cool places

[dlp252]

Nice new picture, Donna. You get to some really cool places

I really have been to some cool places, haven't I, lol!?!

[AndreaB]

I am in a not good place right noww I ate something for lunh yesturday that I had a major reaction to and I am really sick still. I was hoping I would wake up ok but that is not the case I feel really awful. This is going to be a really long day. The horrible thing is I think it was rice cakes I am reacting to. I hate those things !!!

Miamia,

I'm so sorry you're not feeling well and all for a lousy rice cake.

Donna,

Can't wait for your appointment!

Love your new pic! You have been to some nice places.

[Rachel--24]

The horrible thing is I think it was rice cakes I am reacting to. I hate those things !!!

I cant eat rice cakes at all. The more candida I have....the less I can tolerate rice cakes or anything containing mold. Its definately a mold reaction I get from them. Candida is pretty out of control right now and last time I tried a rice cake (about a month ago) I reacted before I could even get half through the rice cake.

Most people with a significant candida problem will be highly sensitive to molds.

I'm sorry you're not having a good day.

Hope the reaction is a short one.

[miamia]

I cant eat rice cakes at all. The more candida I have....the less I can tolerate rice cakes or anything containing mold. Its definately a mold reaction I get from them. Candida is pretty out of control right now and last time I tried a rice cake (about a month ago) I reacted before I could even get half through the rice cake.

Most people with a significant candida problem will be highly sensitive to molds.

I'm sorry you're not having a good day.

Hope the reaction is a short one.

unfortunatly I am still feeling really bad- and yess for a stupid rice cake!! I have not tolerated them well for along time but I haven;t had one in so long that I figured I would gove it a try- needless to say I regret the decision!!

Todays donnas appt right? Any news yet?

[jerseyangel]

Mia--Those of us on the east coast have to wait until at least 4:30 to hear something from Donna--given the time change. I only know that because Andrea and Donna said so

I'm so sorry that stupid rice cake got you so sick

[DingoGirl]

Well hello dear ones, I have not checked in for days....but I really need your help and your scientificness. I apologize for not keeping up....I am just SO SO tired these days and need to figure out why. This is LONG - - apologizing in advance.....

Okay so long story short......in recent weeks I have been feeling inordinately fatigued. I guess it started about a month ago......of course seems like much longer. As you may remember I received good news from GI and those blood results (iron/ferritin/hematocrit/ttg etc), so I guess I should be feeling really perky, right? Not the case.

There are days I'm just staggered with fatigue, and a feeling of the most intense heaviness, looking pasty and white and hollowed out (while gaining lots of weight). I had my annual PAP and "physical" just three weeks ago. PUll up a comfy chair and let me tell you about THAT.

I've had this doctor (primary) for about 15 years, before moving to Monterey. She used to be really wonderful and thorough and kind. Lately......not so much and may I use the word? SHE IS HEINOUS!!! In Jan. of '06 I had an abnormal PAP, and she did a colposcopy - it was normal. I have not even seen her since then - - not so much as a cold since removing gluten (which is a good thing, because when I saw her for the PAP last year, a newly-diagnosed Celiac, she said that she could NEVER prescribe an antibiotic for me due to my Celiac condition and intestines - right). So, just saw her in April.

My ENTIRE "PHYSICAL" lasted about four minutes, I'd say. she did a PAP, probed my abdomen for a fraction of a second - said, does that hurt? I said - yes - she moved on. I guess I was too stunned to persist. She "examined" my breasts for about 2.2 seconds - - they were intensely painful and it was more than two weeks before my period. That was about the only time she looked at me - said "WHY? are you drinking enough water?" (I drink plenty as I work in the yard so much and so vigorously that I was worried dehydration might be causing the fatigue.)

So - - and this is the part that makes me homicidal - she sits down and starts writing notes....she never listened to heart, lungs, looked in eyes, ears, throat, don't they do all those things? But the real kicker - - she said

"WHAT IS GLUTEN? WHAT IS IT IN?"

I nearly fell off my chair. But she was in a hurry, madly scribbling made-up notes in my chart and not listening to anything I had to say about probably one-fourth of her patients having undiagnosed Celiac or gluten intolerance, that it manifests in this way and that.....blah blah blah - - - she didn't listen to a word....and then she was gone.

So......a week later I get a call that my PAP is abnormal again, BUT they are not going to do the colposcopy since they did it 15 months ago.....and that I should just come back in six months for another PAP (I will never set foot in her office again, BTW, and the reason I HAVE been going to her is that she doesn't charge me a co-pay. Remember, I am still on disability and the Medi-Cal doctors are pretty terrible - - but thinking back - - FAR better than this imbecile).

So.....I am done with my doctor. Harrumph.

Now - up to the present.

I have intense abdominal and lower back pain almost constantly now, and I am tired beyond belief, sometimes barely getting through my days at work (3 x a week and only 7-hour shifts) and crawling into bed by 7 pm. People are actually telling me, on some days, that I don't look well. Work is a true test of stamina and an academy-award winning performance given by yours truly each time I'm there......not so easy. My face is often puffy and pale and I am very bloated - stomach very distended. Am gaining and gaining weight, despite eating a really healthy and balanced diet, low-carb, high protein, veggies and fruits.....still walking the dogs very vigorously nearly every day......only drinking about a bottle of wine a week - - I don't think THAT is too much. And through all of this - - there ARE days and moments - hours - when I feel okay and laugh and play and dance around the house with the Ipod.....they just seem so few.

Okay. You're all going to tell me to go to another doctor, and I will, eventually. I don't know that my disability benefits will cover another PAP and the colposcopy, and franky, I don't really care if anything is SERIOUSLY wrong - - - many of you dear ones will understand that I am too tired and don't have the stamina or wherewithal to fight off a terminal illness......but that is another story. My life has been a struggle of ups and downs that have worn me as a piece of elastic, stretched and pulled too many times, until it cannot ever regain its original shape. Again - another story. All the ups and downs of the bipolar years - - - days and weeks and years without sleep, and then sleeping as though I'd never arise again......to say it's taken its toll is a severe understatement. Take my word for this - - a bipolar, improperly-medicated undiagnosed and fully malnourished Celiac is not much fun to be around....... I lost many people, many dear, beloved friends and family, in my life in the last decade. I wore them out. Hell, I wore myself out.

So......here I am. My wonderful and wealthy cousins in Boston have been very vigilant with me, and have literally forced me to get into a psychiatrist who is not an antique. I'll be seeing him in a few weeks and they are paying the co-pay (they are angels in my life). But.....this, I feel, has little to do with antidepressants and psychotropics and therapy - - I feel something physiological is going on.

SO! I have in my hand the lab sheet that my ridiculous doctor provided - I think she checked three boxes. Ha ha, I have begun to check as many boxes as I want. T3, T4 uptake, CBC w/ differential, Vit. B12, cholesterol.......

Can you guys think of anything else that might be going on? Any more boxes to check?

I have been very carefully avoiding gluten....that isn't the issue for me.

What I am afraid of, is that my Celiac dx came too late in life for me (my 45 years is about 75 for a normal person ) and that I truly am just suffering a permanently broken heart and a body that is worn out. and maybe I have actually NO neurotransmitters left? utterly NO chemicals of well-being?

I am sorry this is so long.....God bless any of you for reading it!

[CarlaB]

Susan, I'm sorry you're feeling so bad. I can relate ... truly I can.

Are you maybe part of the Lyme Clan after all? I've read that one LLMD (at least) thinks that 50% of all chronically ill people probably suffer from Lyme Disease! Weight gain, fatigue, neuro issues ... I also get the sensitive breasts ...

I don't know what lower back pain could mean, but it's something I've had in the past. Now I usually ache in the upper back/shoulder area.

My brain is only half working today ... I'll think in it though ... I'm sure others will have some ideas.

[AndreaB]

Susan,

I would suggest looking into lyme/mercury.

Do you have amalgams (aside from the two teeth that are bothering you)? Do you have any other metals in your mouth?

I forget....did you say you'd been on antibiotics?

Lyme isn't totally unreasonable with all the hiking you've done. I don't know if any ticks could have jumped on the dogs and then you. I know my MIL told me my SIL had a tick in her back from picking ticks off the dogs and they live in the woods.

It really seems as if a good thing to do is go to a good LLMD (how far are you from Rachel and Donna?). I think they are about 1 hour south of Sacramento, don't know where their doc is in relation to that though. A good LLMD will run all sorts of tests to try and pinpoint problems. Would that be doable? Could your cousins (was that it) pay for an initial consult with a good doctor instead of a psychiatrist? With what you are dealing with it would seem that would be money better spent. For all we know you could have lyme or mercury that is causing you depression type feelings.

[CarlaB]

It really seems as if a good thing to do is go to a good LLMD A good LLMD will run all sorts of tests to try and pinpoint problems.

This is true. A good LLMD will test you for all kinds of problems that could be causing these symptoms ... not just Lyme.

[DingoGirl]

Thanks girls. I have never considered Lyme as have never had any aches/pains/chronic physical malaise - - quite the contrary until the last three years with advancing Celiac and malnutrition. Carla, that LLMD who thinks 50 % with chronic illness have Lyme - - - doesn't that mainly mean PHYSICAL illness? i.e. disease of chronic physical sickness and pain, as most of you have had? Mine has been in my very flawed mind. But physically - - I have always been very strong and fierce....until my pilot light seems to have gone out, these past two years.

Andrea - - my benefactor cousins - well, she was a social worker and strongly believes that medication is the answer for me......I think it's about 10 or 20 % of the puzzle. And the mercury etc. - - have always had a mouth full of mercury but could NEVER afford to do all of that.

I am wracking up debt like you can't imagine - - but should I win the lottery, I will see Rachel and Donna's doctor, maybe. I dunno. Need a new car, new crowns and root canals, gotta pay off this credit card debt......*sigh*.

did I mention how TIRED I am? sometimes I am just so tired, bone-ass tired, and overwhelmed by everything, that I just cry and cry.....in the bathroom at work, walking through the paint aisle at work, in the car, in Target....walking the dogs.....lots of crying.

and NOW, I must go mow the lawn. Sheesh, I swear, I am THE MOST TIRED and issue-plagued person in this entire Stepford complex, and THEY all have cleaning ladies and gardeners.......where is the justice?

it's all b@#$%$#%, I say, BOLLOCKS!

I would WELCOME a fatal illness......settle my affairs, rent a cabin in the Sierra and have friends and loved ones and dogs come stay, and fly slowly and peacefully up to the arms of my heavenly father.....

Dang, I am getting too deep for the OMG thread. sorry.

[CarlaB]

Thanks girls. I have never considered Lyme as have never had any aches/pains/chronic physical malaise - - quite the contrary until the last three years with advancing Celiac and malnutrition. Carla, that LLMD who thinks 50 % with chronic illness have Lyme - - - doesn't that mainly mean PHYSICAL illness? i.e. disease of chronic physical sickness and pain, as most of you have had? Mine has been in my very flawed mind. But physically - - I have always been very strong and fierce....until my pilot light seems to have gone out, these past two years.

True, I'm sure he meant physically ill, but most of the symptoms you brought up this time were physical.

I'd be concerned with the amalgams, but if you've had them for a long time, it would seem that it would have taken something to put you over the edge into toxicity and they could have contributed to the psychological issues as well.

The celiac being triggered could be just one piece of the puzzle .... I know Rachel can pinpoint when her health started declining and why. I can, too, though I've had Lyme symptoms for years, they just weren't disabling until four years ago.

It would be feasible that a tick bite could have made you mercury suddenly be a problem, along with Lyme from the tick, and triggered celiac. I mean, it's possible.

A good LLMD could sort it all out. They are well-versed in chronic illness it seems. Mine tests for everything under the sun, including celiac disease. They are the only doctors I've come across that look at the whole person and what is contributing to the person not being well, then come up with a plan to help them return to health.

I'm really concerned about the mercury.

[AndreaB]

Duplicate post again.....grrrrr

[tiredofdoctors]

Susie . . . . . . .

I think you need a physical. Go to a free clinic in your area. Tell them your dilemma and ask them if they can run the lyme and mercury tests, and ask them to test for a CMP18. While I was at it, I would ask them to test your DHEA, Estrogen and Testosterone. I would also ask them to run a B12. You would be surprised what pernicious anemia can do to you. I was literally exhausted all the time until they found out that my body had a malabsorption problem with B12. I'm on shots. Right now, I'm taking 1 cc/day -- I KNOW, IT'S A LOT -- had to get that out of the way -- but only doing that for a month to get my absorption up. Then I'll reduce to 3x/week, then 2x/week then 1x/week for the remainder.

I also would be very sad if you developed a fatal illness. I would miss you.

Please take care of you.

xoxoxoxoxoxoxoxo

Lynnie

[CarlaB]

Hi Lynne! And, have you been tested for Lyme yet? I know you were talking about it a while back! How'd your appt. go today?

[jerseyangel]

Susie,

You poor little thing--I just hate hearing you talk like this. I'm so sorry that you're going through such a bad time right now.

Maybe you don't want to hear this, but you are still strong. Look at how far you've come just since I've known you! You're smart, realistic, caring, funny, sensitive and we all love you.

I wish you could see a good gyn--some of these things could very well be hormonal--and I think you need another opinion on the pap.

I wish I had a solution to add, but I will be here if you need to talk.

[AndreaB]

I am wracking up debt like you can't imagine - - but should I win the lottery, I will see Rachel and Donna's doctor, maybe. I dunno. Need a new car, new crowns and root canals, gotta pay off this credit card debt......*sigh*.

I hear you. I'm in misery over our debt load as well. It really makes me question getting my teeth done as I'd rather pay down our debt. I've already waited 2 years and I needed 4 more crowns then.

Dang, I am getting too deep for the OMG thread. sorry.

Never too deep for this thread my friend. We are here for you whenever, whatever you want/need to talk about.

[AndreaB]

It would be feasible that a tick bite could have made you mercury suddenly be a problem, along with Lyme from the tick, and triggered celiac. I mean, it's possible.

Mercury can trigger celiac. It does trigger autoimmune diseases and I still believe it triggered mine and the children's. Mitch has 2 celiac genes and tested negative through enterolab. He's had tons of vaccines in the military but no amalgams.

I'm really concerned about the mercury.

Me too.

[AndreaB]

I wish you could see a good gyn--some of these things could very well be hormonal--and I think you need another opinion on the pap.

This would be a good idea too. Your exam wasn't, to say the least.

I also like Lynne's idea of checking b12. Since you had severe malabsorption last year maybe your stores are critically low, or you aren't absorbing it anymore.

[AndreaB]

Hey Patti!

My hubby wants some of that meringue pie!

[dlp252]

Gosh Susan!!! What a mo-ron doctor!!!! Sheesh...where was she pressing when she asked if it hurt? I'm wondering if she felt fibroids or something...those could be causing pain, they could also account for some of the bloat. My fibroids were first found by my stupid doctor that took my pulse when I was extremely dizzy, extremely low blood pressure and heart palpitations...a few years before the pulse episode, during a routine exam, she was feeling around the abdomin area and said, "Hum I think I feel something...um yes, okay, I think we'll send you for an ultrasound" ! At least she did one thing right, lol. Actually two, she sent me to the urologist who did my surgery last year. Gosh doctors can be frustrating.

Okay all...my mind is mush and I've already forgotten half of what Dr. S said. I just know we're not starting any treatments for the next six weeks. These six weeks, we're going to try to get my body strong and able to handle the treatments. Basically, I am toxic, I've got imbalances in my mineral/vitamins, I've got mold exposure and have been exposed to lyme. He said that at some point in the future we might want to test for co-infections, but we'll wait for these six week.s

Forgive me...this will all be willy-nilly cuz while I was talking to him I dropped all my paperwork and everything is out of order.

First of all...CD57...Mine was 84. Not great he said, but not bad either.

My western blots showed past exposure to lyme, but not a present infection. Igenix shows my IgG as Positive, CDC is Negative. Here are the numbers:

IgM | IgG

18 - | -

22 - | -

23-25 IND | +

28 - | -

30 - | -

31 - | +++

34 - | -

39 - | -

41 IND | ++

45 - | -

58 - | +

66 - | -

73 - | -

83-93 - | -

The testing for molds showed that I have elevated levels of Penicillium notatum, Aspergillus furnigatus, and Stachybotrys chartarum. He wants me to get rid of my carpet. I really have needed to for years...I've lived here since 1988 and the carpet was already in at that point, plus I've had two dogs, and lots of birds, and well, there is most likely tons of mold under there. He wants me to put in hardwood. I asked if laminate flooring would be okay...basically he said "you'll react to everything, so go with the least reactive. Don't know how I'll afford it, but maybe I'll have to refinance my house...I hate to though because my payment is SUPER low.

The Spectracell test showed that I am very deficient in Coenzyme Q-10. I am also low in magnesium, glutathione and my antioxidant function was a bit low.

My thyroid antibodies were okay, so I do NOT have thyroiditis. Still he mentioned something about eventually maybe putting me on thyroid meds...not sure why.

Heavy metals: my levels were actually pretty low. I said good...he said maybe not so much. He said what we all know already, that it CAN be that my levels are low, but it can also be that I am not mobilizing or excreting them, and that is bad. He said with my level of toxicity that it's probably more that I am not excreting them or mobilizing them well. My silver was high though.

Essential elements: basically the only one that was okay was vanadium. Everything else was out of whack. He especially wants to watch magnesium, copper, manganese, molybdenum, selenium and cobalt (which has to do with B12).

So right now he wants me to concentrate on getting my digestive tract in good shape. He wants Anna to make sure my sulfer and methyl...?? pathways are clear and okay. He wants me to chew REALLY slowly...he said that is as good as taking digestive enzymes...maybe better. Over the next 6 weeks I'll be adding a bunch of supplements to my regime, one at a time. I've got 4 to start with. I'm starting with Lymphasol which is supposed to help clear the liver...and it's also supposed to help with sleep!!!!! So, that's where I'm starting, lol. He also wants me to start sooner rather than later with magnesium, glutathione (liquid), essential fatty acids, coQ10, [one which I can't read now, lol], lipoic acid, l-carnitine, NADH (he explained what this is and now I've forgotten).

Gee my posts aren't nearly as scientific as Rachel's are, lol. Before we started he asked how my memory was today, and all I said was, I guess we'll find out. I guess I know.

[CarlaB]

Donna, I know how it is in those LLMD appts ... they come in like a tornado and you have to take notes to even hope to remember anything!

I'm under the impression that Lyme is different than other bacteria, that Igg can be an active infection ... I was Igg positive and Igm negative. I saw someone post today on Lymenet who was Igg positive for years, then all of a sudden was Igm positive and had no new exposure.

You ought to post those results on Lymenet ... or at least look up an old post of Lymetoo's ... she has a description of what all the numbers mean.

I'm glad you're moving forward!

Is this Dr. S the one who's president of ILADS? I know he's out in CA somewhere.

[DingoGirl]

The celiac being triggered could be just one piece of the puzzle .... I know Rachel can pinpoint when her health started declining and why. I can, too, though I've had Lyme symptoms for years, they just weren't disabling until four years ago.

I think mine all started with the appendectomy in 2001 - mine had "complications" and severe blood loss and blah blah blah......then a year later the systemic/edemic poison oak w/ 103 fever and three trips to the doctor, two trips to the er.....and THEN the c. difficile from all of the steroids and antibiotics. And I had a RAGING case of c. diff - - lost 20 pounds in two weeks and had never been so sick in my entire life. So, I think that is what triggered Celiac for me.

And if God wants me to remove the amalgams, He is going to have to provide the $$.

Susie,

You poor little thing--I just hate hearing you talk like this. I'm so sorry that you're going through such a bad time right now.

Maybe you don't want to hear this, but you are still strong. Look at how far you've come just since I've known you! You're smart, realistic, caring, funny, sensitive and we all love you.

I wish you could see a good gyn--some of these things could very well be hormonal--and I think you need another opinion on the pap.

I wish I had a solution to add, but I will be here if you need to talk.

Um, okay, I know I said that I cry a lot......but when I read your posts Donna, Carla, Lynnie, Andrea and then Patti's.......I just burst into tears. Good advice and gentle, motherly concern. Still crying here. But kind of in a good way.

I just mowed the lawn, and cried out there. I keep having the feeling that I just want to lie down, and be taken care of.....just rest and rest. And guess what, my niece, who just shattered her ankle and had surgery, is off her feet until July - - she just moved in and her boyfriend is moving in tomorrow. And so, I'm kind of taking care of her....I don't mind but I can't do it for too long. (and a THIRD dog is living here now... ) Maybe I can get them to barbecue and cook and stuff like that......

DONNA!!! get the carpets out! Carpet is evil. Dang, girl, gotta re-read your post when I"m not crying.

I may have ovarian pain, not sure, maybe fibroids? there is a really good gynecologist here but I will have to pay the co-pay....could be pricey. My mom would absolutely pay.....but she's got to help with crowns/root canals - - if they are ever done.

did I mention how tired I am? really tired of myself, and the same old story. Well, I suppose a new variation this time.

Love you guys. :wub

[CarlaB]

And if God wants me to remove the amalgams, He is going to have to provide the $$.

Fortunately we had dental coverage when I had mine out ... since they were so old, they were covered. I felt much better and put the Lyme back into remission for over ten years after I had them removed. I hope God provides a way for you! Maybe you need to have a good long talk with Mom. Will your niece and her boyfriend be paying rent? Maybe that would help ... I wouldn't ask if it was just her, but since her boyfriend is moving in, too ...

When I'm herxing, I cry all the time, too ... Rachel, Rinne, and I have decided it's a good way to detox.

Come here anytime ... nothing is too deep ... this is what we're all about ... supporting each other. It's so hard because the chronically ill just get forgotten by society ... so we have each other.

[dlp252]

Donna, I know how it is in those LLMD appts ... they come in like a tornado and you have to take notes to even hope to remember anything!

I'm under the impression that Lyme is different than other bacteria, that Igg can be an active infection ... I was Igg positive and Igm negative. I saw someone post today on Lymenet who was Igg positive for years, then all of a sudden was Igm positive and had no new exposure.

You ought to post those results on Lymenet ... or at least look up an old post of Lymetoo's ... she has a description of what all the numbers mean.

I'm glad you're moving forward!

Is this Dr. S the one who's president of ILADS? I know he's out in CA somewhere.

Different Dr. S. The one you're thinking of is in San Francisco...about 50 miles north of me. The Dr. S I see isn't listed in the lists of LLMDs that get circulated, but two of the doctors in his office are. I heard the receptionist say that there is a huge wait list for the better known of the two in that office. Someone made an appointment today for JULY!

Now that I have the results, I'll post them on lymenet. The way my doctor was talking...he doesn't necessarily believe that the IgG is strictly in the past...and he knows that the testing isn't always a good indication. I think I do have the explanations somewhere of the western blots.

I just mowed the lawn, and cried out there. I keep having the feeling that I just want to lie down, and be taken care of.....just rest and rest. And guess what, my niece, who just shattered her ankle and had surgery, is off her feet until July - - she just moved in and her boyfriend is moving in tomorrow. And so, I'm kind of taking care of her....I don't mind but I can't do it for too long. (and a THIRD dog is living here now... ) Maybe I can get them to barbecue and cook and stuff like that......

DONNA!!! get the carpets out! Carpet is evil. Dang, girl, gotta re-read your post when I"m not crying.

I may have ovarian pain, not sure, maybe fibroids? there is a really good gynecologist here but I will have to pay the co-pay....could be pricey. My mom would absolutely pay.....but she's got to help with crowns/root canals - - if they are ever done.

did I mention how tired I am? really tired of myself, and the same old story. Well, I suppose a new variation this time.

Love you guys.

Love you too! I'm always so sorry when any of you have a bad day, week, month or year!

Yeah, I've known I needed to do something about the carpet for a long time, but every time I get enough saved to do it, something comes up. This year it was my stupid car with the timing belt and the exhaust system, then the amalgam removal and all the medical stuff and bioset treatments...talk about credit card debt.

My doc today asked what was the biggest stress for my right now besides my health. Without a doubt it's financial. I know the feeling of wanting someone to take care of me...on the other hand, that always seems to come with baggage. Wait, maybe it's ME that comes with baggage. Maybe I AM the baggage.