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Rachel--24

Omg...i Might Be On To Something

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Rachel,

Your doctor at the time was wrong about diagnosing endometriosis...the only way to diagnose it is to do laproscopic surgery. I had numerous ultrasounds (both types <_< ) and it was never picked up.

Patti....yeah....I think thats what she was saying. She didnt diagnose me with endometriosis but I was supposed to have that surgery so that she could check it. It was a long time ago but from what I posted I think that was the plan.

She did say even with the surgery there is no guarantee that it would get diagnosed.

I dont like the idea of taking hormones but I'm assuming she was talking about progesterone?? :unsure:

I honestly think that those things actually promote candida problems and there is a TON of research suggesting that candida is a main cause for endometriosis in the first place. Thats why I wanna stay away from those sorts of treatments and go the route of antifungal treatment/anti-candida diet instead.

I think theres a good chance I'd either aggravate the situation or even if the cysts were removed they'd come right back because the problem is still there.

Every mainstream treatment has worsened my condition so I'm totally not into that stuff right now. I took birth control as a teenager and I dont know if that helped to set me up for the yeast problems because antibiotics didnt come into the picture until after I got sick. <_<

My thinking is similar to Nanjkay's. I think they label all of these symptoms and go about treating them even though half the time they dont even know if it'll help or if it'll make things worse. They can diagnose something like endometriosis (however they choose to diagnose it) but it still has to be caused by *something* and they have no concern about that part of the picture. So in that case are they really "fixing" the problem or just putting a bandaid over it?? <_<

Thats my whole problem with these kinds of diagnosis.....the treatments arent really gonna get me better and the stress from surgery or the treatments themselves might just make me worse.....which is what happened so many times already....starting with the radioactive iodine for my thyroid. Yeah....that really helped me. :rolleyes:

Sorry for the rant....but yeah....looking back at my post kind of scared me. :ph34r:

If my OBGYN hadnt went on maternity leave I might have had the surgery and I dont think I'd be any better today after having done it.

I'm gonna focus on the copper/candida connection first. ;)

High copper is very much associated with yeast...as are leaky gut, oxalates and phenols....all stuff that I've got going on. I think its all related and the cysts/fibroid would be a symptom of those underlying problems.

The female reproductive organs are a major site for candida activity," according to Leon Chaitow, author of Candida albicans: Could Yeast Be Your Problem? "If, for any number of reasons, the acidity of the regions alters, then the relatively benign yeast form can alter into the fungal form and become actively invasive and spread to other regions accessible from the vagina. This can lead to inflammatory conditions in the womb, fallopian tubes and ovaries."

Often women who have been treated for endometriosis will find that candida is the cause of problems with their gastrointestinal tract and reproductive organs. And candida victims will almost certainly have food intolerances and both conditions are often present in ME.

In 1996 the Endometriosis Association described the relationship of Candida albicans and endometriosis in their newsletter. Here is a brief excerpt: "No other approach to endometriosis has given as consistent, long-term, positive results as the treatment for Candida albicans / allergy / infection and its related problems." (Endometriosis Association, 8585 N. 76th Place, Milwaukee WI 53223).

According to a recent report, some women with endometriosis show an allergic reaction to Candida albicans and are "in need of treatment that includes ... anti-fungal drugs and proper diet." (Current Approaches to Endometriosis, Patient Care, Jan. 15, 1997,pp.34-38).

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Rachel--that's interesting info about the link between endo and candida. I do remember reading a little about that when I did some research.....evidently, it's also thought to have an autoimmune link.

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Patti,

I just HAVE to say that I totally LOVE your new avatar! :D

Yes....I love SUMMER...really HOT days and really PRETTY sunflowers!

It makes me happy. :)

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Rachel--that's interesting info about the link between endo and candida. I do remember reading a little about that when I did some research.....evidently, it's also thought to have an autoimmune link.

Yeah...thats why I'm super glad that we're gonna focus more on my gut issues now and hopefully get on the right antifungal treatment to get the yeast more under control. My gut really needs to start healing and its not gonna happen until we can correct these imbalances and clear up the gut infections.

Alot of the things I've done have been helpful but I think they need to be done simultaniously....rather than a little bit here and there.

I think my OAT test will be one of the most helpful tests I've done so far....I'm hoping so anyway. :)

I think that leaky gut is the main cause of autoimmunity in the body and candida is a well known causative factor in the development of leaky gut. The gut is the main "entryway" for pathogens such as yeast to get into the bloodstream and into the organs. If the intestinal lining remains intact these things dont really get into places where they could trigger an immune response which may result in autoimmunity.

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It makes me happy. :)

Glad you like it! :D Sunflowers just say "summer" to me :)

I think that leaky gut is the main cause of autoimmunity in the body and candida is a well known causative factor in the development of leaky gut. The gut is the main "entryway" for pathogens such as yeast to get into the bloodstream and into the organs. If the intestinal lining remains intact these things dont really get into places where they could trigger an immune response which may result in autoimmunity.

I agree totally....I only wish I had known about so much of this stuff years ago.

I'm looking forward to hearing about the results of the OAT testing.

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I find it interesting so many of us have problems with cyst. I had my first one when i was 17. I remember it was themost painful thing that had every happened. One thing about mine tho is they get to an point and then just pop and it is so painful. None of the drs that i have had have never been too worried about them tho.

So are you gals sayng many times it is cause of candida that we have the cyst. Or am i reading everything wrong lol.

I had an major set back today. I almost felt like i was herxing, but couldnt figure out why i was feeling like this. I actually had a big list of things to do today and i literally could not even do anything. I alid around til noon and then forced myself to go watch my oldest sons baseball game. I have not felt like this in a long time.

paula

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So are you gals sayng many times it is cause of candida that we have the cyst. Or am i reading everything wrong lol.

Theres alot of evidence/research which indicates that candida is a probable cause for alot of cases of fibroids and cysts. Obviously, nothing that mainstream would acknowledge...so the normal treatment would be hormones and/or surgery.....but from what I understand many of the people with endometriosis or these other issues involving the reproductive organs will respond favorably to antifungal treatment along with anti-candida diet.

Endometriosis advances rapidly in the presence of yeast and Candida albicans. The Woman's Hospital of Texas examined 50 women with endometriosis and found that 40 women showed yeast overgrowth. After eight weeks of treatment, there was a significant reduction in symptoms.

People can identify a worsening of endometriosis symptoms during times when the yeast is more of a problem...and when the yeast is more under control....the symptoms of endometriosis improve.

Sorry you're having a setback today Paula. :(

What happened....was it something you ate?

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I finally just spoke with the OB/GYN. She basically said I have to start the hormones right away to stop the bleeding. It's pretty much just progesterone. She said if the bleeding doesn't slow down by Monday morning to double the dose of the Provera.

We will eventually have to get rid of my "thick" lining by making my bleed with certain hormones. She said otherwise there's not much of a chance of getting a normal period...we gotta get the old stuff out and the new stuff in. :P But she will do that at a time when I'm a little more stable as far as anemia goes. (She knows a little about my iron IV's, etc.)

She isn't going to send me to an endo right now, because she wants to run a baseline first. If and when I see an endo, it will need to be a reproductive endocrinologist who apparently are hard to find. So she wants to see what she can do on her part first, THEN send me to a specialist.

She said that a lot of what the Nurse Practitioner said was true, but she (the Dr) wants to come up with a plan of action for the long term. She wants me to feel safe in what we decide to do. :) She talked to me for about 7 minutes, lol! That's half of a phone consult with Dr H...but this was free! And, on a Saturday night! :):D

I am totally anti BCP also, but don't really have much choice these days. I would be fine with not being on it, but right now the hormone stuff is causing a LOT of my symptoms. I just assume get as much under control right now, even if it's a bandaid, as I can so we can treat Lyme, metals, etc.

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Kassandra, I'm just so sorry you are having to go through this, on top of everything else you are dealing with <_<

I hope what the OB/GYN Dr starts you on gets the bleeding under control. It sounds like she is very caring and concerned, taking her time with you, that's got to at least be encouraging after you were so worried working with someone new.

Hang in there dear :wub:

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I am totally anti BCP also, but don't really have much choice these days. I would be fine with not being on it, but right now the hormone stuff is causing a LOT of my symptoms. I just assume get as much under control right now, even if it's a bandaid, as I can so we can treat Lyme, metals, etc.

I'm glad the OBGYN is on your side with this and like Julie said....taking her time to make sure you get things right. Hopefully, this will put an end to all that bleeding and the anemia as well.

I know if I was having those types of symptoms I'd have to do something to stop it from getting worse.....luckily I havent had the period problems or any pain associated with the cysts...which is probably why I forgot all about it! :blink:

Getting the hormones balanced is definately important and I think they will stay that way once you get all the other issues under control. :)

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i found a holistic dentist near me! i have no fillings, but there's a lot of dental work i'd like to have done and it'd probably be a good choice...was always beyond scared to go to the dentist and never took good care of that :lol:

http://www.grotondentalwellness.com/

what's everybodies experience with a holistic dentist? they use EAV so maybe that'd be a help with everything going on

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Kassandra, I'm just so sorry you are having to go through this, on top of everything else you are dealing with <_<

...

Hang in there dear :wub:

Thank you. It just NEVER stops! My port is now giving me problems...won't stop bleeding. So I have to call the surgeon on Monday to see what he wants me to do. :(<_<

I know if I was having those types of symptoms I'd have to do something to stop it from getting worse.....luckily I havent had the period problems or any pain associated with the cysts...which is probably why I forgot all about it! :blink:

I forgot about it all until this happened, LOL! Bleeding for 6 almost 7 weeks forced me to deal with it. Also this new GYN is great...her Nurse Practitioner said "We need to diagnose you! This is ridiculous!" I agreed with her. :D My other GYN never wanted to run tests, etc. Finally someone who cares and takes my crazy menstrual problems seriously. ;)

It also helps my uncle is her really good friend...so I have priority. :) She is totally going out of her way for me, which as I said, is nice for a change. :P

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Kassandra, it is so good that this doctor is taking this seriously. I am hoping this progress really well and the pain and symptoms stabilize.

Sherry

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Kassandra,

I'm glad you were able to get in with the OBY/GN as soon as you did and that she's taking this seriously.

Hope the port bleeding can be dealt with quickly and that it won't be a big or painful fix.

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Carla-

Do you think it would be beneficial to take indole 3 carbinol on its own? (I think that is in Xymogen). I have PCOS and a hidden copper toxicity. And I think the copper toxicity is what causes my terrible endometriosis...plus I am hypothyroid and have all kinds of adrenal issues. Do you find that it helps your symptoms?

Well, I'm taking it because my mother had breast cancer. I didn't really have specific symptoms it was targeting. But, I know my hormones have changed because I had a second puberty, LOL. I had gotten totally flat chested with my illness. It wasn't all weight gain, either.

I told you I didn't think I could ever use NFP! :lol: My temps are so crazy, so are my periods so it makes sense. :)

Actually, you would have known there was a problem before you had symptoms from it. You would have known that you had low progesterone. :)

If I missed something intended for me, please let me know, I just skimmed. :)

I found out why I was feeling so fatigued ..... it was the new sleeping pill .... I guess it just wouldn't wear off. :lol: I didn't take it last night and am feeling fine today. I figured it had to be the sleeping pill because I was getting headaches, too and I've NEVER gotten headaches. Too bad, it was a great sleeping pill .... knocked me out cold. :D

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Carla, I'm glad you figured it out. Are you back to using Ambien then?

Everyone, this is my last full day before I leave for the USA...and I am not sure about my connection once I get to Portland. I finally just confirmed my appointment with Dr. E. on Wednesday, and then I'll have tests drawn on Monday and will try to get a list of what I am having done. I know I am doing Rosmed, a comprehensive gut panel. It's a German company so the website is all in German, but the address is Florida. If I have time, I'll post the description from the kit as I have it with me. Also I am having Vitamin D levels checked, and the Spectracell re-done. The latter one checks the levels of nutrients in the cellular level. I think he also mentioned lyme and babesia but I don't know for sure what test that is.

I'll try to update you when I can and read along when I can!

Sherry

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Sherry, I was still taking Ambien ... the sonata was for when I woke up in the middle of the night.

My headache is gone, but I'm still fatigued. Adam thinks it's because I don't sleep very well ... I didn't realize waking up three or four times per night wasn't sleeping well. :lol:

I have a script for Lunesta that I've never filled. I'll go to the pharmacy tomorrow and see if that works any better for me.

Have a nice trip. :)

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Here's what the Rosmed Gut Health Panel involves: Stool flora, digestive residues, bile acids, pancreatic elastase, secretory IgA (sensitivity testing included: for yeasts and for potential pathogenic bacteria.

Sherry

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I had to go to the ER last night. The bleeding wasn't slowing down and I was SO pale, I looked like a ghost. I didn't want to go, but the on call Dr at my OB/GYN's office said to go and have my iron levels checked.

So we did, and the ER doc was pretty nice. A little ignorant about Lyme. He asked me if I've been to the East Coast because that's the only way you can get babs, and I just said yes. I didn't want to fight with him.

They took blood, and my hemoglobin has dropped 4 points in 2 weeks! :o It's at 11 now. So we will re check it tomorrow morning and decide what to do from there. Of course he didn't order ferritin, so I don't have any clue what that is....It's probably pretty low though. It was 19 about 2 months ago, before any bleeding.

I will probably have to go back to the Hematologist soon so he can give me more Iron IV's.

My glucose was high too... I hadn't eaten in 5 hours at least. :blink: I'm a little worried. He didn't say anything because it wasn't really high, but considering I only had steak and salad for dinner, it should have been lower.

I'll ask the OB/GYN when I see her, if we should do a glucose test.

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Egads Kassandra! I'm so sorry you are going through all this!

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Kassandra,

I'll keep you in my thoughts today....they're gonna have to figure out what's causing all the bleeding. Gosh, for such a young woman, you've had to endure so much--take care and I'll be checking for updates. :)

It's going to be fine--try not to get too stressed ;)

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Kassandra, something I came across yesterday mentioned that PCOS is somehow connected to blood sugar problems .... you might Google that and see what you come up with. I can't remember where I saw it, but meant to mention it to you.

I hope you're feeling better. I bet you're really tired .... I know I get tired when my hemoglobin is low.

I'm skipping meds and supps today, except for thryoid, adrenal, detox, etc. I've been on the new meds five weeks and the zith is still dragging me down. Generally it takes me six weeks to adjust to a new med, so maybe things will start looking up next week. :) I'm going to start back on a lower dose for a few days.

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Egads Kassandra! I'm so sorry you are going through all this!

Kassandra,

I'll keep you in my thoughts today....they're gonna have to figure out what's causing all the bleeding. Gosh, for such a young woman, you've had to endure so much--take care and I'll be checking for updates. :)

It's going to be fine--try not to get too stressed ;)

Thank you ladies! :)

Kassandra, something I came across yesterday mentioned that PCOS is somehow connected to blood sugar problems .... you might Google that and see what you come up with. I can't remember where I saw it, but meant to mention it to you.

I hope you're feeling better. I bet you're really tired .... I know I get tired when my hemoglobin is low.

Yes PCOS has an insulin component. That's why they usually send you to an endocrinologist because that's their specialty. A lot of people have to go on Diabetes meds in addition to hormones for PCOS.

Yes I'm really tired. More tired from being up all night the past two nights because it was so out of control. I was almost hemorrhaging. And I'm tired because my iron is all low.

I looked on the blood work from the ER and my RBC is low. It's NEVER been low...the whole time I've been sick. I'm thinking we're going to have to go to the Hematologist again.

Update: Dr H finally called and I told him what's going on. He said he thinks I need a D&C, and to ask the gynecologist tomorrow. He said to keep him in the loop and if necessary, he will talk to the gyno.

He said that my hemoglobin dropping that fast is dangerous because the body goes into shock mode. He wants me to have follow up blood work with the OB/GYN and then if it's lower see the Hematologist to get Iron IV's.

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Sherry, wow, what a story about the tuberculosis getting healed just by sunshine /vitamin D. Of course we have heard about that in history lessons, but is really thought-provoking. What else can vitamin D be good for? Really encouraging.

I paid privately and my level was 57 nanomol/l (something else in the gram units, 30-something probably as I think 80 nmol/l is 42 ng-something.) and I was taking some vitamin D for a year and a half. Sun-bed and sunshine is good too for bringing up the levels. Now we have rain and thunderstorms and soon I will leave to the arctic, 78 deg. north for the summer again. Must get the levels up to above 100.

Kassandra, I hope they sort this bleeding and iron and PCOS thing out soon.

I did read about PCOS in http://jcem.endojournals.org (glanced briefly over some years) and they use metformin a lot.

I wonder if PCOS is autoimmune in nature, I must check the LDN websites as they list some diseases that are not officially atoimmune but they theorize they are since LDN helps for them. Endometriosis is autoimmune I heard.

I had read about the PCOS-and hypothyroid connection in the PCOS section at www.inciid.org and they have a fact sheet about PCOS and the other hormones. Most of them are a bit off.

And if the thyroid levels are a little bit off (slightly hypo) one can have heavy periods too because hypothyroidsim alters the von Willebrandt factor which is part of the cascade to clot normally. Someone on the thyroid forums has avWWS (aquired von Willebrandt Syndrome) and she is fine as long as her ft4 is high, per orders of the hematologist. There are some abstracts in pubmed about this AvWWS and thyroid.

(but you have this bleeding that does not stop for some other reasons too, not just possible hypo)

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