C Diff Recovery Questions

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beth22
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Re: C Diff Recovery Questions

Postby beth22 » Fri Apr 14, 2017 7:40 pm

Jayut - Many of us have nutritional deficiencies after c difficile. Were these vitamin tests done via a stool test or blood tests? I don't know how accurate the stool tests are. I was deficient in vitamin A, D and on the low side for B12. The intestines do not always absorb what you eat after an infection like c difficile, so that accounts for part of it. I use a sublingual spray to take vitamin D, as it bypasses the Gi tract entirely. B12 also comes this way. It may be a better way to take these vitamins if you are malabsorbing. Talk to your nutritionist and see what he or she says.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Sat Apr 15, 2017 4:34 pm

Spectracell Micro Nutrient panel tests the functional nutrient levels inside red blood cells. Apparently it's less susceptible to daily fluctuations in diet or something like that.

Organic Acid test checks urine for nutrient metabolites.

I find it weird how my BM's can be rather normal but I still get a lot of abdominal pain. It's actually quite frustrating.

beth22
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Re: C Diff Recovery Questions

Postby beth22 » Sat Apr 15, 2017 9:39 pm

Yes, it is very frustrating. I do remember that when I first started with recovery, more solid bms caused more pain and symptoms.

Tsc1964
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Re: C Diff Recovery Questions

Postby Tsc1964 » Wed Apr 19, 2017 11:33 am

Was these test done by an md or functional medicine dr?
Curious because im scheduled to get labs soon .
Im experiencing alot weakness body aches. My last labs my d was low magnesuim serum was high, calcuim low. I made them retest my calcuim its not really a supplement i want to be on long an within a few days it was high. An my folate was double. I.feel its all off an causing these issues. Not absorbing an using nutrients well. Thats great you got a dr an nutritionist guiding you thro this.

lrose14
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Re: C Diff Recovery Questions

Postby lrose14 » Wed Apr 19, 2017 8:53 pm

Thank you jayut for posting this question. I've been eager to hear what others have experienced during their own recovery. You seem quite knowledgeable and on the right track to a full recovery.
I am new to the board and can't begin to express how thankful I am for finding it. In the midst of my daily tears, I'm able to find comfort in knowing that I'm not alone in fighting this awful illness.
I tested positive for CDiff on March 21, 207 and immediately started a 10 day vanco treatment. My last dose of Vanco was on March 31, 2017. No sign of D but I haven't felt well. I continue to feel that something else is wrong with me. It wasn't until I read this post that I realized recovery takes a long time. I feel so run down, weak, have lost a lot of weight, experience daily nausea and dizziness. I am currently searching for a new GI, one who has experience with treating CDiff. This has all been so frightening and frustrating for me.
I hope you don't mind me posting on your thread, I was also curious in knowing about the challenges during recovery and most important knowing that I'm not dying....because that is surely how I have felt lately. It is so hard for others to understand.

Tsc1964
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Re: C Diff Recovery Questions

Postby Tsc1964 » Wed Apr 19, 2017 10:18 pm

Lrose14
When i was so sick i told my husband many times i felt like i was dying an could barely walk alot i was so weak malnourished dehydrated alot. 6 trips to hospital 1 being admitted. I had fmt a month ago my stomach feels bit better an eating better. Im still very weak an keep saying i think something else wrong. Ive had tons of testing. Wash my hands constantly. Dealing with anxiety depression bad. I wish you all the best an that you only have treat once.
Last edited by Tsc1964 on Thu Apr 20, 2017 9:18 am, edited 1 time in total.

lrose14
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Re: C Diff Recovery Questions

Postby lrose14 » Thu Apr 20, 2017 8:22 am

Tsc1964 thank you for sharing your struggles with me and for your encouraging words. It must be such a relief for you to see signs of improvement. I know the feeling far too well and also ended up at the ER last week because I felt so weak. Talk about hand washing and disinfecting, I'm right there with you. Except now, I find myself out of breath most of the day. This has been emotionally draining.
I wish you continued healing and strength.

Tsc1964
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Re: C Diff Recovery Questions

Postby Tsc1964 » Thu Apr 20, 2017 9:22 am

Make sure you are staying hydrated, i drank pedialyte an coconut water mixed with water gallon a day. Also ate bananas vanco can lower potassuim.
It best start you a post so its seen by more an youll get more support.

lrose14
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Re: C Diff Recovery Questions

Postby lrose14 » Thu Apr 20, 2017 7:32 pm

I've been trying my best to stay hydrated with water and Gatorade. I don't think I'm taking in a gallon a day but will try. I go in for more bloodwork tomorrow. I'm convinced there must be some deficiencies or something else going on.
I have never felt this awful in my life.
I need to figure out how to start a thread, thank you for your responses.

Tsc1964
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Re: C Diff Recovery Questions

Postby Tsc1964 » Thu Apr 20, 2017 11:47 pm

Its good your getting bloodwork done. All thro my treatment i kept telling my husband something else must be wrong. Ended up with alot my blood work was off. I recently started liquid d3 4000 ui day is helping. Alot poeple have trouble absorbing nutrients.
Also if you can add hymialyan sea salt to water for electrolytes. Water was jus going straight thro me an i still got dehydrated. Hospital told me keep drinking electrolytes.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Tue Apr 25, 2017 1:39 pm

It's definitely a struggle. My appetite is still very low and I am not gaining weight even 6 months later.

I think completing a SpectraCell Micro Nutrient Panel through my nutritionist was helpful, because it showed very clearly that I still have nutrient deficiencies even though I take a fist full of supplements. I was surprised to find that many health insurance plans cover the cost of the panel.

My nutrient deficiencies are: B1, B2, B3, B6, B9, Serine, Glutamine, Oliec Acid, Glutathione.
Apparently, all these nutrients are intertwined in complex metabolic pathways.

I struggle with how to fix this when I have a very low appetite and take large doses if supplements. I need to get these nutrients somehow, but I just don't know how. I am planning on revisiting probiotics again to see if I can find the correct combo. Apparently, there are certain species which create B-vitamins during digestion.

I am also investigating Pelvic Floor physical therapy to see if this can help with the abdominal pain.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Fri May 19, 2017 2:01 pm

Quick Update:
Pelvic Floor Dysfunction was confirmed by Urologist and Physical Therapist. They said my Pelvic Floor Muscles are "tight like guitar strings." They said many of my remaining symptoms may be linked to the Pelvic Floor muscles.

An another note, I went back to taking Primadophilus Reuteri which does seem to help a little with my low appetite.

Additionally, I switched to a sublingual B-complex and my doctor prescribed a custom injection with B6, B9 and B12. He wants me to do the injection 3 times per week for 1 month and report back.

I hope that relieving the pelvic muscles and getting my nutrients in-line are the keys to getting back to normal.

NanciT
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Re: C Diff Recovery Questions

Postby NanciT » Fri May 19, 2017 3:46 pm

Thanks for the update. I also had the same diagnosis post CIDFF and a long Vanco Taper, long Dificid taper. Both Urologist I saw confirmed, thought I constantly had a UTI.

Hope things have improved and you are feeling better!

NanciT

jayut
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Re: C Diff Recovery Questions

Postby jayut » Tue Aug 01, 2017 7:42 am

Hello,

Thought I'd give a quick update.

Physical Therapy for pelvic floor muscles is helping. Therapist said my muscles were very tight and it's taking a lot of work with home stretches and weekly appointments.

I had my second SpectraCell Micronutrient test and it came back with almost no improvement.
Functionally Deficient: B1, B3
Borderline Deficient: B6, Glutamine, Glutathione, Oleic Acid

Apparently, B1 can cause a lot of crazy symptoms. Also, B1 replenishment is not as easy as taking an extra multi or B-complex. There is a rate limiting transport issue which will prevent the body from absorbing what it needs. Sublingual vitamins did not do the trick so now we are switching to Dr. Derrick Lonsdale protocol using TTFD in the form of Lipothiamine.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Wed Nov 15, 2017 7:28 am

It's been 1 year since my first post. No C Diff relapse, but still have digestive, nutrient, and weight loss issues.

I got the results for my third micronutrient panel. The results have improved, but I still have issues to work on. It's not easy to replenish nutrients when you have digestive issues.

The TTFD Lonsdale protocol worked to fix my B1 status. Thiamine Hcl did not work at all.

I now need to work on B3, B5, Biotin, Inostiol, A and chromium which are all considered "borderline" deficiencies.


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