Ongoing and going and going!!

[reelingenious]

I've been chasing a resolution to my recurring issues for over 10 years. Been down many roads, had a whole plethora of tests, all of which come back as "normal, no action". That, of course begs the question, do they mean normal, or more likely "average"? The latest test, a comprehensive stool evaluation, showed a couple of areas for possible concern. No growth of Lactobacillus and high levels of Blastocystis hominis. There is also a Lab comment which I don't understand and neither does my nutritionist, she's still trying to get in touch with Genova for an explanation, namely "3SENSI'S: All yeast, add'l bacteria". It just appears on a couple of pages, in the margin. There are also a couple of "potential pathogens", namely, Enterobacter cloacae and Citrobacter species. The pathogens show sensitive to Berberine, Oregano, plant tannins and uva-ursi. I have been GF for 15+ years, I have now cut out dairy, alcohol, sugars (apart from some raw honey), on the extracts indicated above plus turmeric, Apple cider vinegar (mother), probiotics, pre-biotics, Vits D, B-12, plus a dietary regime prescribed by the nutritionist including bone broth. After 2 weeks I still have the symptoms, i.e., Weakness, fatigue, stiff and aching, brain fog and depression. Question is, am I on an appropriate protocol?

[BadHare]

We're all different, & as you're seeing a nutritionist who has analysed your results, they probably know more than I can comment on.

However, what I suggest is if you are not extremely dairy intolerant, swap your probiotic pills for kefir. It's the only probiotic that's been proven to reach the gut, ie found in stools. The symbiosis of several strains each of lactobacillus, yeasts & streptococci enable it to withstand digestive enzymes & stomach acid, which all the other probiotics cannot. The kefirans eat lactose first, so it's suitable for those who are lactose rather than any dairy intolerant. There's a good chance it will eat up any gut pathogens you may have, too. Here's one of my favourite articles: chriskresser.com/kefir-the-...

There are many more, Yemoos being a good fermented food website. It's also possible to make water based kefir, but I've not tried this.

I looked up 3SENSI'S which came up with the most peculiar results, none of relevance helth tests, so hope Genova can explain.

If you're taking B12 (& hopefully folate?) as a supplement, it can buck the standard tests. Mine is low normal range, despite extremely high dietary B12. I've found the easiest solution to PA symptoms is increasing my B12 to optimal range with high dose sublingual methylcobalamin or hydroxycobalamin. I intend to start self-injecting B12 in a few months. Your GP should, but probably isn't aware of NICE guidelines for PA/ B12 supplementaion, whereby people are treated for symptom relief rather than blood tests results. Perhaps wave this at them: cks.nice.org.uk/anaemia-b12...

The other thing to check out is your thyroid hormone levels.

The PA & Thyroid UK forums are excellent, & have wonderful knowledgeable admins, who will be able to explain the PA & thyroid implications better than I can. It's a good idea to post any test results along with the lab ranges for interpretation, as each laboratory is different.

[reelingenious in reply to BadHare]

Thanks for that very detailed response. I have been ingesting Kefir and love it, whether it's good, beneficial one or not, I don't know. I will explore making it I have been peppering the Thyroid community for several years, but not as often as i pepper my GP!! All Thyroid tests have been inconclusive, and the anti body ones have shown nothing! I am seeing my GP again soon so will take up the cudgel again and mention the PA B12 issue again!!

Many thanks again.

[BadHare in reply to reelingenious]

You're welcome!

I drink up to a litre of kefir a day, & definitely feel better for it. It's easy to make, & takes as much time each day as making a pot of tea.

TUK is amazing! My hormone results are in normal range, but my life derailed after 40 years of hypothyroid symptoms. I self-diagnosed, after following links & advice on the forum, & now self-medicate. Just being warm is wonderful! Explaining to my GP what I'm doing & why has been interesting, but he accepts I now know more than he does. Medicine's marvellous, but not when some practitioners are so dogmatic they leave us ill. Hope your cudgel waving pays off, & your GP provides you with B12 jabs.

Keep us posted if you find out what the peculiar notes are?

[reelingenious]

I've had a positive meeting with my GP!! WOW!! I presented her with my stool results, also the NICE reference page given by BadHare, plus a note published by South Tees NHS Trust. The two NHS posts indicating the failure of "normal" B12 tests to show malabsorption of B12 and also possible reasons for this. Intrinsic factor is obviously mentioned but also the presence of Pathogens, in my case Blastocystis Hominis. The MMA test wasn't on her list as available from the local hospital's pathology dept. She agreed with me that the connection was far from tenuous, dashed out for a syringe and gave me a B12 injection on the spot. Two days later and strength has returned, head as cleared and aching as ceased!!

Now this seems good news, but I've had lots of false dawns and my symptoms are "roller coaster" ones. It could be just coincidence that the injection corresponded with a cessation of full blown symptoms or it could, of course, be a placebo effect. The proof of the pudding will arrive if the symptoms re-occur while the B12 is still active. When will I need to go for a second B12 top up, she never mentioned that, except to say that those PA patients she treats are usually desperate when the time comes.

Also it's obvious that the pathogen has to be eliminated, then, hopefully, by B12 levels can be maintained normally, either by diet or supplementation. (Best ones??) Fingers crossed.

ps., the Genova margin note "3SENSI'S" was merely an abbreviation for their own use!

[reelingenious]

Assuming the B12 deficiency/malabsorption, proves to be the cause of the symptoms I have been living with for such a long time, 1) If I can get my gut back to normal, how should I supplement? Which are best? 2) If the gut pathogens are not the cause of the malabsorption, is the only recourse injections, if so how often?

Should I try to get a "proper" active b12 test or MMA test?

[reelingenious]

Still up and down with the symptoms. The B12 injection did seem to have an effect, but only lasted about 10 days. So probably coincidence/placebo!! I have regular attacks of diaeorrea, and can't find an obvious cause. Still on my pathogen unfriendly diet, with Vit D, C, Zinc, Berberine, Microb X, Probiotics, fermented food, etc. No B12 as I've got a test kit for active B12 and waiting till the effects of the injection has left my system.