Someone please tell me what this might be...

[Iwillbeatthis]

Since July after I stopped antidepressants I've had what I assume to be a recurring infection. It started off with a small stomach ache and would go away then come back a week later. Then it developed into a stomach ache, loose stools and diahorrea, nausea and a strong sense of imbalance in my head similar to brain fog. It would go for 2 weeks and then come back stronger every time I was feeling run down. In a way this felt much worse in my head than normal brain fog does. I felt immensely vulnerable and not in control of my body, a strong shift in mental state almost as if I was losing consciousness of mind. My best friend described me as if it was I possessed. My long range eye sight also rapidly dropped within 20ft me everything was suddenly blurry. I was also getting intense neck pain/stiffness and ear pain as the symptoms developed. I also started getting muscle pains in my arms the same pain as if I had the flu but with no fever. The bones in my face was incredibly tender and painful if I pressed on them especially the one next to my ear canal was the most painful. These symptoms have been gradual. When I tell the doctors these symptoms they say they don't add up.

 I went to an optician to see if anything was wrong with my eyes and they said there were no underlying problems with my eyes apart from my eye sight being a lot worse. I did get some relief from these horrible symptoms with lots of raw garlic, it made my head feel much better. I also went to acupuncture and this did help my symptoms a bit. I went to my gp and he said anxiety is probably playing a role but in my opinion I don't think it is my heart rate was normal I don't  butterflies in my stomach and I wasn't constantly worrying or obsessing about it. He suggested it might be IBS but I am 100% certain its not. I went to a tropical illness hospital and they said it could be a left over infection in my GI tract from Mexico. He did blood test and was fine but I have yet to hand in a stool test.  My stools have improved a lot so I am wary to hand in a sample which might not bring back any results. I have also done stool tests in the past with no results. I am 100% certain this is some type of Viral/fungal/bacterial infection but I need some advice on how I can find out what it is.


I mediate, do yoga and run most days and I still have no improvement.


I was in Mexico from March to May so maybe its something left over from there or maybe this is the same infection that has been causing my POIS this whole time. Weirdly I started trying Alpha gpc and vitamin d and my eye sight became back to normal and the difference was massive.

[Iwillbeatthis]

Interesting thing to add I saw a Chinese herbal medicine guy. He gave me some Chinese herbal medcine to cleanse my stomach this did settle my diarrhoea for one week and then the next week  a liver cleanse one which didn't do much. Then he gave me a antiviral one for flu surprisingly this did make my mental and cognitive symptoms a lot better however I was getting a lot of stinging and pelvic pain from it so I had to stop. 

[Simon66]

The blurry vision and all over body pain are indicative of severe inflammation. It usually starts from an imbalance of gut bacteria, antibiotics can trigger it. Antibiotics like Fluoroquinolones (Ciprofloxacin and Levaquin), Metronidazole and Clindamycin are known to cause these issues.

Garlic is a natural antimicrobial, it could be suppressing some bad bacteria in your gut and relieving some of the inflammation, natural anti-inflammatories like ginger may also help.

[Iwillbeatthis]

Hi Simon

Yes I agree with you about the imbalance of gut bacteria. This has only started since August but 2 years ago when my POIS started I asked my doctor for antibiotics and he prescribed me Cipro, luckily I researched it before trying and never ended up using it. I sympathise for you as I see cipro has made your situation a whole lot worse. I think its crazy how they prescribe it so easily for non serious infections. Btw I am also uk based.

I have tried raw ginger root maybe around 15 grams a day, for a few days and it didn't do much in relieving my symptoms, where as with raw garlic I instantly feel much better. If you try raw garlic I would suggest 5 cloves a day with water on an empty stomach.

Since I've had this problem that I've described above, I've given in stool samples to my Gp they haven't found anything. I also went to the tropical disease hospital and they said my bloods were normal. I haven't done any bloods with my Gp since this started as I am scared they are going to come back showing nothing and they also were reluctant to do any further blood tests because of the ones I've had for POIS. Personally I don't think anything would show up as I don't have a fever.

I feel a complete altered state of consciousness when its bad, its much worse than my POIS brain fog. It seems to be a gradual build up with the mental symptoms and I feel very fragile. I have tried meditation in this state unable to focus much and I end up falling asleep, with running I feel very light headed and not in control and my joints ache like hell when normally I can run fine. Garlic is the only things which seem to relive this problem. I know this is far fetched but the symptoms seem the same as fungal meningitis especially with how they gradually build up. I think one time high doses of alpha gpc and vitamin d fixed my eyesight issues.

I have seen on other posts you are interested in Functional Medicine. I am also interested in seeing a Functional Medicine doctor in London but they all seem to be quite basic and very expensive so I'm not sure if its worth it. I was wondering if you had found any good ones.

[Nas]

Hi Simon

Yes I agree with you about the imbalance of gut bacteria. This has only started since August but 2 years ago when my POIS started I asked my doctor for antibiotics and he prescribed me Cipro, luckily I researched it before trying and never ended up using it. I sympathise for you as I see cipro has made your situation a whole lot worse. I think its crazy how they prescribe it so easily for non serious infections. Btw I am also uk based.

I have tried raw ginger root maybe around 15 grams a day, for a few days and it didn't do much in relieving my symptoms, where as with raw garlic I instantly feel much better. If you try raw garlic I would suggest 5 cloves a day with water on an empty stomach.

Since I've had this problem that I've described above, I've given in stool samples to my Gp they haven't found anything. I also went to the tropical disease hospital and they said my bloods were normal. I haven't done any bloods with my Gp since this started as I am scared they are going to come back showing nothing and they also were reluctant to do any further blood tests because of the ones I've had for POIS. Personally I don't think anything would show up as I don't have a fever.

I feel a complete altered state of consciousness when its bad, its much worse than my POIS brain fog. It seems to be a gradual build up with the mental symptoms and I feel very fragile. I have tried meditation in this state unable to focus much and I end up falling asleep, with running I feel very light headed and not in control and my joints ache like hell when normally I can run fine. Garlic is the only things which seem to relive this problem. I know this is far fetched but the symptoms seem the same as fungal meningitis especially with how they gradually build up. I think one time high doses of alpha gpc and vitamin d fixed my eyesight issues.

I have seen on other posts you are interested in Functional Medicine. I am also interested in seeing a Functional Medicine doctor in London but they all seem to be quite basic and very expensive so I'm not sure if its worth it. I was wondering if you had found any good ones.

Maybe try a mast cell specialist instead of spending boats load of money on functional medicine doctors who don't even know what POIS is?

[Muon]

My advice: Don't bother going to a doctor at all. It will probably cost you tons of money without getting any results.

Try some things that were succesfull to other members: https://poiscenter.com/forums/index.php?topic=2338.0

And/or find a lab and do your own research: https://poiscenter.com/forums/index.php?topic=2684.0

[Simon66]

I don't really have any more advice for you other than be careful with your diet. I eat the same meal everyday (sweet potato, butter and chicken, sometimes chicken liver) and keep a food, supplement and symptom diary to help me figure things out when I do make any changes.

The doctors I saw were useless and I am having success by cautiously trying new supplements that I have researched. It is really just a case of throwing money at this problem, buying many supplements, maybe ordering a few blood tests and seeing which stuff reduces symptoms.

I'm documenting my progress on another thread and slowly working my way through each type of supplement. Feel free to join in if you want, I'm about to start flavonoids for oxidative stress.

[Simon66]

One further thing, there is a product called Allicin Max that may interest you. It is supposedly a concentrated form of beneficial garlic chemicals, fairly cheap for 30 capsules.

With regards to your gut and the negative stool tests. It's worth considering that there is nothing bad in your gut, people like me who have a reaction to Cipro are probably proof of that. An imbalanced gut with low diversity can give rise to an overgrowth of undesireable gram-negative bacteria. So, in my opinion it's not pathogenic bacteria causing issues but just a lack of gram-positive bacteria to regulate the gut and provide balance. My advice is avoid all pharmaceuticals, they do untold damage to our bodies.

There is a test from genova called something like comprehensive stool test 2.0 with parasitology, that's probably the one you want to do to rule out anything bad.

[Vandemolen]

I don't really have any more advice for you other than be careful with your diet. I eat the same meal everyday (sweet potato, butter and chicken, sometimes chicken liver) and keep a food, supplement and symptom diary to help me figure things out when I do make any changes.

The doctors I saw were useless and I am having success by cautiously trying new supplements that I have researched. It is really just a case of throwing money at this problem, buying many supplements, maybe ordering a few blood tests and seeing which stuff reduces symptoms.

I'm documenting my progress on another thread and slowly working my way through each type of supplement. Feel free to join in if you want, I'm about to start flavonoids for oxidative stress.

I do not think it is healthy for your gut to eat the same meal every day. The gut needs all kinds of good bacteria. Some are in chicken, others are in meat, fruit and vegetables. But the liver is very healthy. A lot enzymes. I try to eat less bread and eat a sweet potato salad instead. And I eat papaya. I also take pills with enzymes.

[Iwillbeatthis]

Ok I will try Allicin Max thanks for the suggestion. Do you know if the stool parasite test you suggested is any different to the Nhs ones. Also I saw you had an Atlasbiomed Microbiome test and I was thinking about getting the Dna and Microbiome test but I wanted to know if they are worth it or not?

I was in Mexico early this year for 2 months and I had the same type of stomach pain there as I did here so I'm pretty sure its some bad bacteria left over from there in my gut.

I keep waking up with bad neck pain I am not going to sleep stressed or sleeping in a bad position. The neck pain usually signals the start of the other symptoms.

I do agree with Vandemolen about  eating the same meal everyday. Do you not eat any green vegetables? Also what do you guys think about the keto diet, my friend just started it. It doesn't seem very safe or nutritious in my opinion.

[Simon66]

Ok I will try Allicin Max thanks for the suggestion. Do you know if the stool parasite test you suggested is any different to the Nhs ones. Also I saw you had an Atlasbiomed Microbiome test and I was thinking about getting the Dna and Microbiome test but I wanted to know if they are worth it or not?

I was in Mexico early this year for 2 months and I had the same type of stomach pain there as I did here so I'm pretty sure its some bad bacteria left over from there in my gut.

I keep waking up with bad neck pain I am not going to sleep stressed or sleeping in a bad position. The neck pain usually signals the start of the other symptoms.

I do agree with Vandemolen about  eating the same meal everyday. Do you not eat any green vegetables? Also what do you guys think about the keto diet, my friend just started it. It doesn't seem very safe or nutritious in my opinion.

Sorry for the late reply, I don't seem to get any email notifications for this topic.

I don't know what the NHS uses for their stool testing. I did a 23 and me DNA test and didn't find it helpful. The Atlasbiomed test is frustrating, they don't give you the raw results, just some basic data. I won't be testing my microbiome with them again, not detailed enough.

If your problems are anything like mine, the body pain is oxidative stress. Things like Nitric Oxide and Superoxide can damage the body's tissues and deplete things like B12 and other nutrients involved in producing antioxidants. I had a test done with Biolab called "Antioxidant Profile" that showed some abnormal results, my GP had no clue about oxidative stress and antioxidants so I'm dealing with it myself.

My antioxidant profile results are here:
https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995

Nitric Oxide, Peroxynitrite and other antioxidants can be inhibited by Hydroxycobalamin (A specific form of B12), Gamma-Tocopherol (A specific form of Vitamin E which is heavily deficient in my antioxidant test results).

If you're looking for a probiotic, BB536 has been the most effective for me. There is another one called Normaflore that you can get on ebay that is supposedly good for diarrhoea and rebalancing the gut. Obviously, use these at your own risk as they could make things worse, I always start by opening the capsules and taking a tiny dose.

[Iwillbeatthis]

Thanks I have ordered Normaflare hopefully its just as good for me as it was for you. I have also party solved the problem in this thread. I  cut out gluten and white potatoes and started only having brown rice instead. However I noticed I was still getting the same imbalance. I have now cut out all rice and have felt  much much better. For some reason I can eat sour dough bread and feel fine so I don't think gluten is that bad for me. White potatoes and both coloured rices and roast pork seem to really mess me up a lot though. Every time I ate them I would feel pressure on both sides of head and imbalanced. I would wake up with neck pain and brain fog and it would just get worse from there.

[Simon66]

Thanks I have ordered Normaflare hopefully its just as good for me as it was for you. I have also party solved the problem in this thread. I  cut out gluten and white potatoes and started only having brown rice instead. However I noticed I was still getting the same imbalance. I have now cut out all rice and have felt  much much better. For some reason I can eat sour dough bread and feel fine so I don't think gluten is that bad for me. White potatoes and both coloured rices and roast pork seem to really mess me up a lot though. Every time I ate them I would feel pressure on both sides of head and imbalanced. I would wake up with neck pain and brain fog and it would just get worse from there.

Just be careful taking it, I can only really tolerate about 2 drops daily and if I take 4 drops then I wake up with some joint pain. I don't know if I need some cofactors or perhaps it is a die-off (herxheimer) reaction and I just need to gradually increase the dose.

I tried to power through this possible herx reaction, I took 4 drops daily for about 2 days but discontinued when I started getting bruising and soreness on my shins. I also had some pain in my gut initially that felt like a battle going on, it was quite encouraging and hasn't reoccurred since. About 6 months ago, I was reacting to all kinds of foods and decided to do a water fast for 3 days. After the fast, I had better tolerance to foods and started getting bruising on my shins just like with the Normaflore, so I can't help wondering if it is a die-off reaction. The danger is that it may not be a herx reaction or it could be a sign that my good bacteria are dying.

I've never liked the idea of eating a limited diet, it's a workaround I won't be ever satisfied with. If I can find something that re-balances everything in the gut and alleviates all of these intolerances then I'll keep taking it for the rest of my life. Be careful with cheap meat, they are known to contain antibiotics and steroids, I only eat organic chicken currently. I also do really well with sweet potatoes roasted in some unsalted organic butter.

Let me know how you get on with the Normaflore, I'll be updating the other thread periodically.

[Iwillbeatthis]

Ok cool it came today after buying it yesterday! I will try some drops in the next few days. Do you think I should buy B. Longum BB536 also like you mentioned in your other post. Also I've never taken probiotics before do I need to take them with food or without?

Yes I agree with you sweet potatoes are great but I try not to have too much. I actually buy a lot of grass fed steaks from my butchers which make me feel great after probably due to all the b vitamin content inside of them.

[Simon66]

No, I wouldn't bother with the BB536 for now.

Ideally take the probiotic 30 minutes after eating. Put the drop(s) in a glass of water.

One thing I think may be helping as a cofactor for Normaflore is I bought a multivitamin from Holland and Barratt. It's called Nature's Way Children's multivitamin:

https://www.hollandandbarrett.com/shop/product/nature-s-way-alive-children-s-chewable-multi-vitamin-tablets-60027959?skuid=027959

This multivitamin contains a sweetener called sorbitol that the Bacillus Clausii in the Normaflore will happily consume. With probiotics, you can feed them with certain sugars to better activate them in your gut and help them multiply. The research article I read said that Normaflore bacteria like to eat Sortitol and Xylitol sweeteners. I am thinking about getting Sorbitol off ebay as well as it's not sold in most shops.

[Iwillbeatthis]

Ok thanks for the advice!

So I took 3 drops in the day and felt very good after, I had very minor stinging in my neck(where I usually have chronic pain and stiffness) but maybe it was a die off symptom. I'm unsure whether placebo or not but I felt a lot sharper today and more present. And I just had two more drops now.

The only worry I have with this is that if I start taking it every day, then surely my gut will be mostly just this specific bacteria strain which apparently isn't a good thing as you need a wide range of good bacterias:
https://renewingallthings.com/how-to-tutorials/why-you-shouldnt-take-probiotics-every-day/

What do you think about this?

Also I found out that apples, peaches and plums are high in sorbitol. Do you think I should also be taking a multivitamin as I'm currently only taking this probiotic.

Thanks
IWBTS

[Simon66]

Ok thanks for the advice!

So I took 3 drops in the day and felt very good after, I had very minor stinging in my neck(where I usually have chronic pain and stiffness) but maybe it was a die off symptom. I'm unsure whether placebo or not but I felt a lot sharper today and more present. And I just had two more drops now.

The only worry I have with this is that if I start taking it every day, then surely my gut will be mostly just this specific bacteria strain which apparently isn't a good thing as you need a wide range of good bacterias:
https://renewingallthings.com/how-to-tutorials/why-you-shouldnt-take-probiotics-every-day/

What do you think about this?

Also I found out that apples, peaches and plums are high in sorbitol. Do you think I should also be taking a multivitamin as I'm currently only taking this probiotic.

Thanks
IWBTS

The guidelines for Normaflore suggest taking 2 vials daily for 2 weeks and then reducing it to a maintenance dose of 1 vial daily. This probiotic is unlikely to take over your gut, these particular strains probably remain for 1 week maximum. Probiotics don't really colonise, they need to be taken daily in order to get the benefits.

The downside of eating the fruits for sorbitol is that they contain other sugars like pectin which could feed other bacteria. I ordered some sorbitol and xylitol powders so I'll see if they help.

I can't really help you much with cofactors for this probiotic, the only thing I've found is this research article.  When the page loads, just click the PDF link to see the full research article and search for the Bacillus Clausii, it talks about the sugars that this bacteria likes to consume:

https://mic.microbiologyresearch.org/content/journal/micro/10.1099/13500872-141-7-1745

[Simon66]

If garlic seems to help you, maybe try Linden's Super Garlic. I've just bought some to try along with my Allicin Max.

[Iwillbeatthis]

I tried allicin max and I didn't feel any benefits  really long term apart from the first two days of feeling slightly better. I just started a full ketogenic diet now so will see how that goes. I've restricted rice, gluten potatoes before but never have done anything as extreme as keto, in the past I didn't know keto was so strict on carbs. I'm also doing daily yoga and deep breathing in combination with this plus vit d, flaxseed oil and magnesium.

Honestly I've tried 6 cloves of garlic a day (sometimes more) and it does fix my symptoms when I'm at my worst but doesn't seem to kill anything in the long run. If keto doesn't work I might try antivirals and I am also thinking about seeing a functional medicine doctor in London. Due to the chaotic way I'm trying supplements with no tests and just me guessing most of the time. The only problem is that the functional medicine doctors here don't seem to be that functional like the good ones in America. Seems like most here are just naturopaths claiming to have a functional approach.

Wishing you success!

[Simon66]

Are you still doing the L-Arginine?

I think it might be helping me if I take 500mg or less each day and I think it needs to be taken everyday in order to start seeing results within a week. I took 3000mg each day at one point and my hair started falling out so I think the body only needs a small amount or else other aminos like lysine become deficient.