I’m looking for some advice about whether I can take Alforex while also taking Helico ] X and Mastic Gum supplements, both herbal. I’ve been taking Helico ] X for over 30 days and still have same symptoms as before. It’s supposedly recommended that the paitent take it for 60 days? Isn’t it not true that any supplements take around 30 days to take affect? My symptom is complex - I have functioned heart burn associated with stress not acid reflux according to a NHS consultant. However, I recently had a consultation with a holistic specialist, I completed an application form along with all my medical history and then had a one to one consultation. Although I haven’t been tested yet by the practitioner because of the current situation, she ‘strongly’ suspects it’s down to infection in my throat aka Helico bacteria.
If anyone has taken this route I am open to advice and information or outreach?
Thank you!
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Catatvet05
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Please step away from these holistic specialists. Unfortunately they are not doctors. Many of their qualifications only require basic english and maths as prerequisites, so they don't have the in depth medical background that doctors have. They can also use treatments that have no scientific basis or haven't been through clinical trials. If they had the hospitals would be using them. I employed more than one of their kind last year. They diagnosed me with and treated me for something I didn't have and I became extremely ill as a result, much worse than when I started. I ended up spending £4.5k on their fees and expensive supplements and it was a complete waste of money. The institution that got me back on track was the NHS. In fact the therapists made me so ill my inflammation markers went sky high so I ended up needing a colonoscopy, which is how I got my IBS-C with visceral hypersensitivity diagnosis.
In relation to your question I would have thought that Alflorex can be taken with those products (if you want to continue taking them - I'm not surprised that they haven't done anything for you). The best people to ask are Precision Biotics themselves who manufacture the product. Their email address is ask@precisionbiotics.com. The Alflorex can take a couple of months to take effect in some people. For me it was just over a week.
Please liaise with your NHS consultant about the functional heartburn - they will have a set treatment for this which would have undergone clinical trials.
There is some information about functional heartburn here:
I believe it is a similar syndrome to what I am suffering from called visceral hypersensitivity. My brain picks up the normal activity of the bowel as pain. This is caused by pain control neurons in the brain being worn down by extreme stress, PTSD, neglect and abuse in childhood etc. I understand with functional heartburn the brain is hypersensitive and experiences pain to a minor amount of acid in the throat, which other people without this syndrome wouldn't experience. The treatment could involve nerve pain agents, but your gastro team should be able to advise you on this. For visceral hypersensitivity the first line treatment is 10mg amitriptlyline. The theory is that 6-12 months of amitriptlyline can help these pain control neurons to regenerate.
Thank you very much for your extensive information - it's was very insightful and given me lots to think about.
I have seen a consultant under the NHS and undergone a PH, lots of different meds and an endoscopy to only not resolve the issue -all was clear of any sign of acid. I was put on amitriptlyline and for 6 months nothing change; I could not tolerant it any longer because the adverse effects were terrible especially as it was effecting my bowl. I don't have much of IBS trouble as such it's more to do with constantly burping 24/7 at the moment for the past 2 years. The doctor asks that I take another blood test because no one can resolve!
The holistic 'specialist' don't rate her at all. She has prescribed and no follow up.
I also wanted to ask, do you think the supplements are commissioned? My current specialist says she isn’t?! I was actually going to find another for a 2nd option but since you have seen more than one I think I will just have to try with NHS again. Not a route I wish to take again to be honest.
Sorry to hear about all that you have been through and it seems that you have been trying lots of different things. Some of the holistic practitioners may have an account with particular supplement providers- the second of mine did, although she did declare this fact. The supplier was 'practitioner only' which meant I had to give the name of my therapist to obtain the supplements. This meant that even though I ordered them, she would have got a kick back from the sale. Not all therapists will be getting such commission though. My gripe is the fact that although many have good intentions, they are not medically trained.
It is interesting what you are saying about gas. It is possible to get some elements of IBS like symptoms and not others, such as gas & bloating without disordered bowel movements. There is not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with digestive problems bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excessive gas. There is an interesting infographic on this here:
This excessive gas, builds up pressure in the system and can cause the lower oesophageal sphincter (LES) - the value that sits between the stomach and the throat to weaken allowing a certain level of acid to flow back into the throat, which results in the feeling of reflux.
This is why it’s worth trying good probiotics such as Alflorex or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a NHS nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app it will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with digestive issues don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my digestive issues was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.
Yes I’m following some of the FODMAP and have been for some years. I can’t eat most carbs like rice, potatoes especially sweet potatoes gives me acid. I’m also taking manukau honey on a daily base - it’s not scientific backed up but I’ve tried everything else so might as well. I must say though, taking mastic gums has enabled me to eat some wheat like pitta bread something which made me terribly bloat and a little in pain, so I guess I do have IBS elements? I’ve just started the Alforex supplement and will see how that goes too. Thank you for sharing your post.
Yes it seems you have everything in hand. In reality IBS syndrome is a catch all for digestive complaints that don't fit any other known digestive disease. Once further research is done I'm sure it will be split into a number of sub-components. To an extent it already is with IBS-C, IBS-D, IBS-M, but I also think the sources of these issues will be categorised further with things like gas and bloating lumped into the mix. If you are still experiencing problems, it's probably worth raising this with your NHS team. You mention your functional heartburn is stress related. Have you been referred for CBT or anything similar? I'm sure you are going to come back and say yes :-). I used to suffer from acid reflux and raised the head of my bed by 20cm using strong plastic bed risers found on the internet. I still sleep this way today to help guard against it. It's also important to try to clear your bowels every day, since I found my reflux got worse when I was backed up. The NHS recommend ground flaxseed to help with this, but I think you said you were fine in this area. Good luck with the Alflorex. It would be interesting to know how you got on with it.
Because 4.5k is crazy amount of money & I wanted to know what tests/supplements someone receive for that amount of money.
A few iv spoke to the main cost was for fmt.
pm me if you don't want it in forum, I always ask people in forums about what tests they had privately & what they paid.
I can't believe how prices are so different from what Iv seen over the years on forums, or how much some have to spend trying to find answers.
One nutritionist (& by qualifications thats all she actually was, so short course any of us could do) was charging up to £100 a phone call, no tests, just a phone call.
I hate to think what someone like that makes off supplements to.
This is what the lady is, a nutritionist and wanted payment for consultation. The information she gave could of got it from her sight! She couldn’t get what my symptoms were but strongly suspects infection, something which nhs missed?!
I agree 4.5k is a crazy amount of money. I never intended to spend that much - no where near. The problem is these therapists can suck you in making you believe they can help you - "if you just try this or just try that" - "I have had so many clients who have done well on this or the other" and when it doesn't work, you get fed the next line "it's because of this or that", "this means that we now need to try x or y", there is a limited amount of science behind it, which then sucks you in further. Both therapists I used became inconsistent in their advice, which then made me realise that they really didn't know what they were doing. Also their ethos is that I shouldn't be feeding my gut bacteria for a while, but many of the supplements they recommended had ingredients that actually did this and they were completely unaware. All of this should be regulated - I think they can do real harm with their practices.
In terms of cost here are some examples, but sorry to put this in CAPS, just for the audience out there I DO NOT RECOMMEND ANYONE WASTING THEIR MONEY ON THESE. The tests I mention have a lot of information, but these therapists are really not qualified to interpret them or to make any recommendations from them.
What I did learn from all the research that I carried out to help guard myself from their advice is that you need to balance out your microbiome using a good probiotic. I could have replaced everything below with spending £24 on Alflorex. I was gutted, but now I have learned my lesson, I can also help protect others from making the same mistake.
Costs:
Initial consultation (brief) - £62.5
Further consultation - £60
Tests:
Dutch complete test - £259
CDSA/P test - £383.5
MOAT test - £161
SIBO test - £149.5
Results consultation (3 hours) - £360
- she spent a chunk of this time telling me about the fantastic holidays that she goes on (yeah - I know how you can afford it)
Hydrogen Sulfide SIBO test - £130
- this is rubbish - there is no proven test for this
Repeat SIBO test - £193.5
0
New therapist initial consultation - £110
Further consultations - 5 x £75 = £375 plus results review £33 = £408
Osteopath visceral manipulation consultation x 2 - on recommendation of therapist - a waste of time - £139
Supplements:
Whey protein isolate (to give me calories on a very restrictive diet) - around £250 in total (multiple bags)
Elemental diet (Absorb Plus) - £75.05 per tub (many tubs had to be consumed in order to be on a liquid diet for 2 weeks plus - £450 spent in total) - this diet left me tied to the house for 2 weeks since it is liquid in and liquid out. This did nothing for my symptoms and made me lose weight that I couldn't afford to lose.
GI Revive (210 capsules) - £78.95 - I took these for 2.5 weeks and they made my symptoms far worse, so I had to leave 1/3 of the bottle which I was gutted about due to the cost
Vitamin C (2000mg Ascorbic acid) - £23.11 - I was told to take 1-10 capsules at bedtime - this meant taking up to 20,000 mg of Vitamin C. Even I knew that taking large doses of Vitamin C are bad for your health. There'd been some studies that large amounts of Vitamin C can stop cell die off which can lead to cancer. When I mentioned this to her, she became quite irate and said that monkeys manufacture large quantities of their own Vitamin C and are no worse off for it (so she thought her opinion was above the science ... hmmm )
Rifaximin & Neomycin antibiotics - on recommendation from therapist - £150 private gastroenterology appointment to obtain private prescription. £332 for 42 tabs rifaximin
plus £17 for Neomycin (28) plus £15 delivery DHL - this had no impact on my symptoms
Saccromyces Bouladrii - £25.24 - this is one of the very few things that I can recommend to support the system whilst on antibiotics - a beneficial yeast that doesn't get killed off by antibiotics and helps to protect the microbiome whilst on them. Actually I should have been on the antibiotics in the first place.
Garlic Plus - £22.86 - she didn't know that this supplement is high fodmap, so it made my symptoms worse
Arthred (pre-digested hydrolysed collagen for increased absorption) - £44.16 - multiple tubs of the stuff - around £230+ - not sure if this helped my symptoms or not
You can see how, as time goes on things start to mount up. It's like getting caught down a rabbit hole that you find it difficult to get out of. Their treatments made me so ill, that I started to feel dependent on them to get me out of it. In fact I had to break the cycle and do my own research to get my health back on track and undo the damage that they had done.
My current one hasn’t even bothered to follow up or respond to my emails. She also suggested pepsin for digestive aid but I was against it because of the zinc and some of the ingredients I’m sure would have troubled me. Many past supplements have. Though now I’m starting to tolerate some of supplements after eating.
I have read about the benefits of taking vitamin C and do take it in normal dosage. I do follow a forum and seems to have some interesting stories from the group. But, and I say but, from what I have read there has been no success stories to get rid or stop covid. Although a scientist made an interesting discovery in China.
Any chance you could name and shame those people? I’m tempted!
I do have high hopes for Alforex, it hasn’t bothered me. And my diet is getting along better than I used to.
Many thanks for sharing. Let’s hope we both recover by the end of the year!
Thanks for your kind words Catatvet05. I do think that some of these people set themselves up in these roles as a lifestyle move - ability to work from home, work part-time and charge high fees, which means the lifestyle rather than their clients are their priority. All of the ones I came across previously had other careers, so were obviously using it as a way out of a job they weren't happy with.
I took pepsin too and couldn't tolerate it.
I do understand the temptation to name and shame. When I was doing my research, one of the therapists was actually an ex-GP who had been struck off due to malpractice - I found a newspaper article on them. It's probably better for everyone to treat these practices and therapists with skepticism. It it really up to the government to put laws in place to regulate them, for it to proven and a stream of work within mainstream NHS with people who for instance have a minimum degree in microbiology, with follow up medical training with a strict code of practice.
Hope you find some relief from your symptoms soon. Good luck.
A GP? Now I’m hearing it all. She should of known better! Mine well it’s her full time career and She passionate about moving holistic approach; she is always banging on about how the government is against our best intentions for health and recovery from Covid. Needless to say, I disagree and one of governments current new programs proves otherwise!
It was actually a fella who was the GP. I didn't go with them because of what I found out. Your therapist sounds as evangelical about it all as mine was - to them it's almost like a religion - to the point where they start ignoring the science and can only believe in their own ideology.
I also agree with you about the vast array of fees charged for these services. When I did my analysis of the charges, fees are in the range of £85 to £449 for an initial 1.5 hours consultation with £60 to £299 for follow up 1 hour consultations.
What they practice is something called 'functional medicine', but this approach has not been proven:
One important thing to remember from a UK stand point, is that the NHS run loads of tests in the background on your blood, stool samples etc. that you are not aware of. They just come back with a 'normal' result. When I asked my gastroenterlogist about the results of my test, he printed out the contents of my patient record around testing and I couldn't believe the amount of information that was there - laid out in a way of the expensive private tests, showing expected ranges and whether the value of e.g. a nutrient is in range or not. If you want this information all you have to do is ask and you'll see how much you get for free.
After I spent all that money on tests, the first nutritional therapist recommended 18 supplements with an initial cost of nearly £600. I spent most of the consultation in shock whilst the therapist reeled them off without batting an eyelid.
One of the therapists went for the hard sell on initial contact, pressing me in multiple emails to immediately order very expensive tests when I’d only just made an enquiry about her services.
Another therapist replied to my email queries about the diet and supplements with paragraphs of information about her personal life, the fact she worked part-time to look after her grandson, the number of clients she had recently taken on and why she didn’t have time to answer my questions to gain clarity even though the information she provided was conflicting. This was really unprofessional.
When I asked another therapist questions that it seemed she couldn’t answer she would ignore my emails rather than replying that she didn’t know.
One of my last emails to my last therapist indicated that I wasn’t well at all. I had decided at this point to no longer continue with her, but she made no attempt to contact me again to find out how I was considering I was under her care, I found it pretty unbelievable.
Maybe she had realised I was onto the fact that she hadn't a clue what she was doing and didn't want to be exposed.
Wow! I think this is why my current one is not getting back to me. She had said during my consultation that everything I written she would have suggested. So begs me to question, I could of done her job anyway, with all the supplements I looked into I could of referenced the supplements myself. I just needed a practitioner to authorise one of the supplements. I sent her a wide list of other supplements asking for her advice, of course she ignored my emails. 😆
Hi, I just thought to send an update since we spoke earlier. She managed to email me back and had said that the treatment should by now taken affect. She would have liked to run some tests but as I have done so with nhs she asked for the results instead. She doesn’t want to give any more suggestions since what she prognosis was under the symptoms I explained. Of course she would have run a lab tests but because of the Covid restrictions I was unable to see her. She also sent a standard list of further supplements I could purchase online, one of them being betain, b12, zinc, acid soothes and digestive enzymes, Acidophilus Plus, etc
She asked for results from my gp and go from there. Would the endoscopy show wide results or just a diagrams of the diagnosis (this is what I’ve seen)
Sorry. I don't know the answer to that question. To be honest you seem to know a lot of stuff already and found many things out for yourself like I have. I wouldn't waste any money on her. I'm sure that you could try different things yourself. It took me some time to realise that I didn't need their guidance and actually in the end, I knew far more about many things than they did. I was pretty shocked out how limited their knowledge was and how they hadn't kept on top of the latest science. I just needed to have the confidence in myself to do it on my own.
Unless you are vegan, you are unlikely to need B12 - in fact I've just looked at my NHS test report which is on my patient record and B12 is included on there. You could ask your GP for a print out of your record with all your tests so you can see how this is yourself. You could individually try betain, digestive enzymes etc. Please remember that it's best to only try one new thing at a time. For instance, if you are trying Alflorex, just stick with that for now and see how you get on with it. The problem with trying more than one thing at a time is that if things get better or worse you won't know specifically what is helping or hindering. I took Acidophilus & Rhamnonsis for years - it helped a bit but no where near as good as Alflorex.
When I tried betain and digestive enzymes separately they made my pain worse. Everyone is different though. With enzymes it is best to start with small doses (though even small doses affected me):
Thank you for the details. Yes, I’m looking at a few ideas and your right about going about it myself. I know I had full blood count and everything seemed normal: b12, zinc levels etc. I will go a head and ask for my results just to see, give me an idea. Thank again.
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