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Omg...i Might Be On To Something

Rachel--24

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mftnchn Explorer
mftnchn
Posted

Hi, another quick drive by. Good appointment today with Dr. E. She said overall there is improvement, and a half dozen or so of the supplements are no longer needed. Major stressors are three bugs: babesia (the #1 problem), chlamydia pneumonie, and mycoplasma, and the heavy metals. Parasites and yeasts were fine, digestion and other things mostly better than before.

Enula tests very well for all three infections, but not taking it with zithromax though it does work well with the andrographis. So we'll see what my LLMD wants to do. She said looks like based on ART that I would have allergic reactions to Mepron.

All for now,

Sherry

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AndreaB Contributor
AndreaB
Posted

Sounds like a good appointment Sherry. :)

CarlaB Enthusiast
CarlaB
Posted

Darn, Sherry, Mepron is so yummy! :P

miamia Rookie
miamia
Posted

hey all-

I have just been reading along. I am still having a really rough time. I think i have to change my gastro doc. He is just way to busy and never gets back to me and both my doctor and I are frustrated. I have to change my meds and I am going to start this new one today for the gut motitlity. I feel like I lkeep going back to square one , but in worse shape then when I started.

Miamia

aprilh Apprentice
aprilh
Posted
Does it matter what kind of vit a drops. Also what it the immune enhancer supplement. I would love to try this to help mine. They have been really bad lately. Also how much tea tree and eucolyptus. you can pm the info if want to.

paula

Paula,

Priority One Bio Vegetarian (Immune System Support) she said to take 2 every 3-4 hours. This is a good hefty dose to be used during infection or if you are having trouble kicking a virus.

5 drops of Vit A. - I can post the brand when I get home. She said the Vit A dries up the mucous membranes. I only do this high dose for 5 days.

5-10 drops each of the tea Tree and Eucolyptus and inhale in steamy water 2 times per day. Oregano Oil or Thyme are good too. Basically antimicrobial essences.

I will get more info on the machine that she used because that really kicked it in the butt!

Hi, another quick drive by. Good appointment today with Dr. E. She said overall there is improvement, and a half dozen or so of the supplements are no longer needed. Major stressors are three bugs: babesia (the #1 problem), chlamydia pneumonie, and mycoplasma, and the heavy metals. Parasites and yeasts were fine, digestion and other things mostly better than before.

Enula tests very well for all three infections, but not taking it with zithromax though it does work well with the andrographis. So we'll see what my LLMD wants to do. She said looks like based on ART that I would have allergic reactions to Mepron.

All for now,

Sherry

Sounds like a good appointment! Glad there is improvement!

AndreaB Contributor
AndreaB
Posted

Mia,

Hope the new med works for you. Sorry you're still feeling lousy. :(

Keep us updated as you are able.

:wub:

jerseyangel Proficient
jerseyangel
Posted
hey all-

I have just been reading along. I am still having a really rough time. I think i have to change my gastro doc. He is just way to busy and never gets back to me and both my doctor and I are frustrated. I have to change my meds and I am going to start this new one today for the gut motitlity. I feel like I lkeep going back to square one , but in worse shape then when I started.

Miamia

I'm sorry it's still so rough for you, sweet lady. You're in my thoughts :)

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Rachel--24 Collaborator
Rachel--24
Posted
  • Author

I'm so frusterated with the stupid CDSA test!! :angry:

This test is the worst for someone who's got C....maybe heinous would be a more accurate description. :P

I finally started the test last Friday....then completed day two on Saturday. I felt like I was on a roll...until Sunday....which is when I had the tiniest BM ever. :rolleyes:

Of course day 3 is the day that has 4 containers that need to be filled. So yeah....it wasnt enough. :(

Since then...nada.

I dont even know if its acceptable to have a day 4....but I just didnt have a big enough sample on day 3.

This sucks!! Im gonna have to call the lab and ask them if its ok if this turns into a month long project or something. :rolleyes:

Whats gonna suck even more is if I have to start the whole test over again!! OMG....that would be heinous for sure.

I'm wanting to move on from this so I can take my OAT test (which is just sitting here waiting) but I'm just so freakin stuck on the CDSA right now. Major bummer! :angry:

I been eating cheese all week. Regular block cheese. :ph34r: You guys think its making my C worse??

Back at the beginning of the thread I ate a whole big block and ended up with 2 weeks of C...I was in tears and the whole thing was quite dramatic. This time there was no racheling going on (imagine that :P ) but still...could it be enough to mess me up??

Yeah....I know....its not too smart of me to try reintroducing cheese while I'm taking this test....but I thought it might bring the yeasties out.

Its obviously not working like I planned cuz now theres not much of anything coming out. :unsure:

Ok...so maybe I just tried to justify my reasons for eating cheese. The truth is I just really WANT it!! :lol:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Also, I have to say that this process has made me realize how much my enzymes were helping. I'm not able to take them while doing the CDSA and for the first time in months I'm feeling bloated and really stuffed after my meals.

It always feels like I'm eating too much (well...ok I do tend to overdo it a bit) but the whole time I was taking my enzymes I wasnt feeling this way. I had forgot all about it!!

I was visiting my friend the other day and I said "Do I look sick to you?" I have to say that to her almost everyday....its just a habit thats been going on for like 5 years now. :lol:

So she goes "No...but your tummy looks fat....you dont look sick...you look pudgy". :lol:

Its because I cant take my enzymes!! My stomach was staying flat no matter how much I ate the past few months...now the bloatedness has come back with a vengeance. :o

The other thing is that I've been using the magnesium sulfate cream (epsom salt) consistently for a few weeks now. I put it on several times a day and I feel less toxic...even when I'm eating bad foods. :huh:

I wasnt getting this much benefit from the baths and I'm wondering if its because of the chlorine. <_<

I know the water has lots of chlorine because there have been times that I could smell it pretty strongly.

Anyways, I love the cream....plus it doesnt dry my skin like the salt baths...the cream is smooth and moist like lotion. :)

AndreaB Contributor
AndreaB
Posted

Rachel,

Don't know about the cheese. Dairy can constipate some people and it's probably not helping you.

Hope you don't have to start the test over. :(

confused Community Regular
confused
Posted

Rachel,

Im sure the cheese is not helping at all lol. I miss my cheese so bad. I need to just break down and orxer those enzymes if i can have cheese and soy again, but i keep forgetting to order them lol Ok back to you lol. Could u eat some prunes or something after the cheese to help out lol. Or drink some kind of the many juices out there, it would bring out the beasties and make u use the bathroom. Im right there with you and the C. More so when i have to go poo for test lol

April,

Thanks for that info. I am going to look into it later on tonight.

Everyone,

Still havent got an shower filter. But today i skipped my bath and just sponge bathed with bottled water and i felt so much better. So now i know it is the chlorine that is hindering me all over again.

Now i guess i have to get an filter head, get vit a drops, enzymes and my brain back and ill be good to go lmao.

paula

CarlaB Enthusiast
CarlaB
Posted

Rachel, didn't ice cream keep you regular? I'm thinking it's a good excuse for Racheling some ice cream.

Paula, we got a whole house filter .... it's great! I've been showering lately at the health club .... they have a pool, so the kids go to the pool, I work out, then I go to the pool, then we all shower. It's so much easier than taking turns at home. :D But their water has chlorine ... not to mention the chlorine in the pool. :ph34r:

I've been feeling about 90% on these new meds finally. I'm still taking just a half a zith .... if I take the whole thing, major fatigue so bad I want to lie around all day. Just doesn't seem worth the drop from 90 to 75%.

miamia Rookie
miamia
Posted
I'm sorry it's still so rough for you, sweet lady. You're in my thoughts :)

Patti-

thanks s so much for the kind words it means alot

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, didn't ice cream keep you regular? I'm thinking it's a good excuse for Racheling some ice cream.

Yeah...the ice cream had me regular. It balanced stuff out....but at the same time my brain function was way down....and I was in my own world...just me and my ice cream. :P

I didnt even realize it until I had to give up the ice cream...the Dr.'s kept telling me and it took awhile for me to take their advice but yeah....major difference in the brain function when I got off the ice cream!

I have to go to court tomorrow so I cant be there looking all drugged out and not able to complete my sentences. ;)

It definately brought the yeasties out though....it was when I was on the ice cream that my antibodies were sky high. Once I was ice cream free the antibodies went down over 50%....even though they were still high it was a huge drop. So yeah....ice cream feeds yeast and impairs brain function....I'm pretty sure of it now. :lol:

Mia,

Sorry things are rough for you still. :(

I hope you can get set up with a new gastro who is more available for appts. since you have been dealing with this for awhile. Hopefully things will start progressing soon. I'm keeping you in my thoughts. :wub:

miamia Rookie
miamia
Posted

Rachel-

Thanks- I hope that getting a new gastro will help things move alittle more quickl in finding an answer.

I really hope you can finally get this test done I hate C I suffer from it as you know and it is the worst thing. Nothing can make me go. I feel for you!!!!!!!!

Miamia

miamia Rookie
miamia
Posted

has any one heard from kassandra?

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel-

Thanks- I hope that getting a new gastro will help things move alittle more quickl in finding an answer.

I really hope you can finally get this test done I hate C I suffer from it as you know and it is the worst thing. Nothing can make me go. I feel for you!!!!!!!!

Miamia

Well I finally finished the test....thanks to a few handfuls of chocolate chips. :rolleyes:

The thing is I cant get the test picked up until Monday....since I'll be in court tomorrow. The instructions say the test needs to be at the lab within 5 days of collection. :huh:

Well the first collection (day one) was already 6 days ago. I have no idea if they mean 5 days since the first collection (which seems impossible) or within 5 days of completing the test. :unsure: By the time I get the test picked up (Monday) it'll already already be 4 days since completion. I'm so extremely frusterated about this....I do NOT want to have to start over!!! Boo-hoo. ::crying face::

I've been off my enzymes all this time and I just wanna be able to get back on track with everything.

I think the C might have more to do with stopping the enzymes than anything else. I'm sure the cheese cant be helping matters but it seems like the bloating/constipation became an issue again once I stopped taking my enzymes. :(

aprilh Apprentice
aprilh
Posted

I easily get the C problem and cheese definately makes it worse!

I agree with Paula, some prunes might be helpful, or prune juice. There is an herbal laxatea. Hmmmm.....flax seed? Fruit smoothie, wheat grass shot?

confusedks Enthusiast
confusedks
Posted
has any one heard from kassandra?

I'm here. Just kinda feel stuck in slow motion. I talked to the Dr yesterday and the bleeding got worse again, so she switched me to another med....it's used for uterine cancer. :( So I'm trying to not freak out totally. But it's given me horrible cramps, so I was in a lot of pain today.

AndreaB Contributor
AndreaB
Posted

Kassandra,

I'm sorry the bleeding has gotten worse today. Hope the new meds will help. Try not to worry.....I know easier said than done.

I'm thinking of you. :wub:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I agree with Paula, some prunes might be helpful, or prune juice. There is an herbal laxatea. Hmmmm.....flax seed? Fruit smoothie, wheat grass shot?

Actually all of those things are extremely high in salicylates/phenols......so even if they produced a BM....the toxicity that would build up in my body would not be worth it. So unfortunately those things (especially herbs/fruits) are totally off limits for me.

Kassandra,

I'm sorry the bleeding has gotten worse today. Hope the new meds will help. Try not to worry.....I know easier said than done.

I'm thinking of you. :wub:

Ditto to all of this.

Try not to worry too much Kassandra. Take it one day at a time. This new development kind of threw you for a loop....but you've gotten through some tough things in the past and I have no doubt that you'll get through this one too. Hang in there. :wub:

mftnchn Explorer
mftnchn
Posted

Mia so sorry things are rough and sure hope you can find a new GI. Kassandra, I sure hope the change in med helps things improve.

Carla, and those of you treating babesia, I might need a reminder about what meds work. I should have asked Dr. E to check Melarone I think. Although I would be delighted to be on an only herbal approach for awhile, I worry that it might not be enough.

Rachel I sure hope the test works, these are such a pain to do.

Sherry

miamia Rookie
miamia
Posted

Kassandra-

I am so sorry to hear the bleeding has gotten worse . Hopefully the new meds will help and the cramping will subside.

I have an acupuncture appt. today. I have done acupuncture but not for a very long time. This guy is supposedly amazing but I am still skeptical becasue I feel so bad and while I believe in acupuncture I guess I just wonder if it will really be able to help me at this point. Still its worth a shot so today I have my first appointment.

Miamia

CarlaB Enthusiast
CarlaB
Posted
Carla, and those of you treating babesia, I might need a reminder about what meds work. I should have asked Dr. E to check Melarone I think. Although I would be delighted to be on an only herbal approach for awhile, I worry that it might not be enough.

Herbs - Artemisia Annua (Dr. B says it will not work alone, but needs meds) and Enula.

Meds. - Mepron, Malarone, Lariam, Quinine (not as common anymore).

Mepron needs to be taken with a Macrolide (zith/biaxin) to prevent resistance.

Mepron is the strongest .... I'm on it with zith, art, and enula.

dlp252 Apprentice
dlp252
Posted

Mia, I'm interested in the accupuncture...I've been thinking of doing that for a couple of years now. I guess one of these days I should really check into it! Sorry you've been feeling bad!

I'm here. Just kinda feel stuck in slow motion. I talked to the Dr yesterday and the bleeding got worse again, so she switched me to another med....it's used for uterine cancer. :( So I'm trying to not freak out totally. But it's given me horrible cramps, so I was in a lot of pain today.

I'm so sorry Kassandra!

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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