Back Tracking

[jkoconne]

Hi all,

I had been doing pretty good the past few months! But then i woke up 3 weeks ago and its been down hill from there. My stomach has gone back to how it felt 2 years ago...Im neasuous all day, my stomach wont tolerate much volume and it wont empty the same. My gi tract is moving so slow and causing so much pain (stabbing and cramping). Im so upset becasue I dont know what happened...i was doing good and nothing changed!

Im still trying to do my daily workouts but its hard when im in pain, Im trying to get my 90oz but with my stomach not emptying the same anymore Im struggling to get 70-80oz. Ughh...being in this spot has really made me realize how far ive come the past year and half/ 2 years and I dont want to back track like this. Has anyone else experienced something like this?? Doing good and then wake up and start back tracking for no noticable reason??

Im really trying to stay positive but I saw my GI and she couldnt explain why things got bad again. My neuro told me it was a flare up and to listen to my body. By that he ment keep trying to do my daily routine, eatting and fluids but dont push myself and give me body rest if it asks for it.

Well...its always asking for rest now. My tachy has been so bad that after a few hours of being awake and a light workout Im ready for a serious nap. I know when i feel that way i need to give my body what it wants becasue, knowing me, if i dont ill get extra set back. But when i do that I cant get the school work i need done, or spend time with family and friends or do the little things around the like laundry and dishes. Not doing thoes things add stress and the stress makes symptoms worse. Its a teribble cycle. I work with a congitive behaviorist who helps me deal with stress but in times like this that doesnt seem like enough.

Does anyone have advice? Im sure many of you have been through something similar.

Thanks much

[Joann]

I am so sorry you are going through this. I wish I had an answer for you. I have had some flares too, and alwaysafraid I will be back to my worst. I am getting over the flu and during the flu I had no bad POTS symptoms but the day my fever went down, it flared awful.

One thing I think that may help us a little is recognizing the symptoms and maybe learning some little things that help? Rest, not to push yourself to much, but its that fine line of not pushing but still pushing? For me, if I have a flare up, I know I have to take it easy, but I can't lay down for too long of periods of time or it will be worse.Sorry for my ramble.

I hope you are back on track soon. And hopefully someone with more experience can offer you some advice.

[Angela]

so sorry Jamie. I have had a really bad start to 2013 too....the flu for over 2 weeks, now I think I am going thru a herx. Ugh. Are you still doing the midridone?

[Joann]

The flu *****, but what is a herx?

[roxie]

Somethig that helped my stomach immensely was going dairy free and i mean completely diary free, not just lactose free. It really helped my motility, reflux, stabbing, and cramping feelings.

Also digestive enzymes helped and I spent a while eating really gentle and as "pre digested" foods as possible. Like only steamed vegetables instead of raw. Then i gradually added things back in.

I still have some stomach problems but they aren't unbearable anymore. Also, as my stomach started improving off dairy and with enzymes I realized it was my lower abdomen/pelvic area was causing the most trouble. It turned out to be endometriosis and learning to manage that is also helping.

[jkoconne]

Joann - thanks for your input. I know the fine line all too well. Im trying to do what i need- class, exercise, eating- and giving up all the other things until I can slowly add them back in.

Anglea- Im sorry you're having a rough start to the year too! Im sorry you're sick again, i know the flu hit you harder then it hit me in dec. I hope you get better fast Im still on midodrine and my Gi and neuro told me to try to add in mestinon (spelling?) this weekend..they think itll help with my GI symptoms

I hate Bananas- Thanks for the advie! Im trying to cut all dairy out...i started to wean off it in dec and im down to a very small amount about 3 times a week. I havent seen a difference at all. Im also gluten and corn free. I do digestive enzymes too and depending on how bad the pain is I adjust my meals from normal diet to liquid diet :/ I know what you mean about the lower abdomen pain. All my docs said endometriosis, since it runs in my family and all the symptoms said that...went into surgery a year and a half ago and they found nothing Then they told me it was pelvic floor dysfunction sooo with this flare up my Gi and neuro have decided to try mestinon (spelling?) in hopes it will help!

[POTLUCK]

Hi jkoconne

Any changes, such as medication, that might match with changes in GI symptoms?

[Relax86]

We are all so much smarter after having learned what we know from the forum. If you've made a recovery before you can do it again. Stay positive and try not to let the fear and worry get ahead of you. You can do this

[jkoconne]

Potluck- I started midodrine a little over 2 months ago but this didnt start until 3 weeks ago and docs dont think its related. I use to feel this way but its been a long time!

Relax86- Thank you for the encouragement

[Dizzysillyak]

My flare that sounds like your was from getting h pylori and parasites at the same time. Have you

been tested for these ? I'm not a doctor but I was thinking that a quick home test for h pylori would be using pepto

bismol. My tongue turned black from killing off the h pylori. Pepto is said to kill h pylori

but if you're positive I'd see a doc for real testing and meds to make sure you kill it.

There are parasite treatments on the web or you can get tested by metametrix then treat.

I was already using digestive enzymes and avoiding certain foods when this hit so I knew

it wasn't that. Gluten is notorious for causing gi problems with or without causing celiac disease.

Hope you feel better soon. D

[jkoconne]

Dizzysillyak - thanks! I was tested a month ago for parasites and i was clear. But have you heard of Protoza's? there has been some talk on the forum about this new idea. I tested positive for it 4 years ago but the doc had not yet connected it to pots and knew little about it so Im waiting to go back to Dr.Fry until he has a better understanding of it.

[issie]

Jamie,

Pepto can slow your digestive system down more. It can cause constipation. It is however something that treats h pylori and is used with antibiotics to treat that.

Let us know what you learn from Dr. Fry. I know he will have to take you very slow (as he is me) some of us that have such high levels of the protozoa and are so sensitive have to be treated very slowly. I was listening to a webinar tonight about methylation pathways and the doctor spoke about protozoa and the connections with methylation. She said that when we start to kill off protozoa and/or fix methylation pathways that are not functioning properly - we release heavy metals along with bacteria and toxins and that will make us very sick. (I wondered why EDTA was suggested, and now I know.) A person has to be extremely careful with detoxing heavy metals. I did have too high levels or arsenic a few years ago. So, a lot of the things I'm learning are starting to make more sense. I detoxed it with cilantro.

Issie

[Dizzysillyak]

Dizzysillyak - thanks! I was tested a month ago for parasites and i was clear. But have you heard of Protoza's? there has been some talk on the forum about this new idea. I tested positive for it 4 years ago but the doc had not yet connected it to pots and knew little about it so Im waiting to go back to Dr.Fry until he has a better understanding of it.

Depending on who did your parasite test, it may not be accurate. I was told that the metametrix test was the only one that looks for DNA so it's more accurate than the others. But even then some parasites can be missed. I use papaya seeds, pineapple and raw pumpkin seeds on a regular basis as a precaution. But I need to look at better options.

I've heard of protozoas but haven't looked closely at these. Info on which parasites, bacteria, etc is favorable is conflicting at this point so I'm not sure if I'd try to kill those off or not. Issie knows more about this than I do tho ...

I had cod worms and can tell you those weren't good for my gut. I got them from eating cod fish that I hadn't cooked all the way. These worms hide out in between the meat layers so they're had to find. I found them half way through eating the fish ... I'd gotten the cod from Publix so I just assumed it was safe.

Some people continue to get or identify other food intolerances after removing common intolerances so you may want to look at the rest of your diet. I had to totally give up all red meat, raw onions and garlic last year. I'm mostly ok with most foods in the paleo diet. Also, cross contamination from the foods you're intolerant too can be a big problem for some. Be sure to check all supplements for cc too.

I had to change my digestive enzymes over the years too. I went from taking Digest Gold to Virastop and Candidase (these are the strongest otcs I could find) and I'm now on Creon, prescription, but playing with taking Candidase to help me digest cellulose. And I take Virastop if I wake up in the moring and can feel food stuck in my stomach or I have stomach cramps. So far it's working the best for cramps. I take it on an empty stomach.

If you decide to try the pepto, Natural calm, mag citrate should keep things moving. I read that pepto can't be considered a thorough treatment for h pylori so IMHO, if you're positive, I'd see a doc for antibiotics. My integrative dr told me that my infection was too strong to trust anything but strong antibiotics. The treatment seemed to worked because my next metametrix test came back negative.

hope you feel better soon ... d

[yogini]

I don't think you have backtracked. It is common to have ups and downs in symptoms which sometimes last for weeks, I think we all have our own way of healing from a flare up. But I tend to agree with your dr. Listen to your body, you will heal faster. You can take a break from exercise if you're in a flare. It is all about the big picture. Missing for a few days of exercise should not make that much of a difference. I think fluids and rest are a big help. Feel better soon