Welcome to the forum.
I'm so sorry that you are going through all this.
It is disappointing that no doctors after all the investigation & testing have come up with any answers to help you. Psychosomatic my "BLEEP"!
You have been tossed around like a hot potato, while your body is
becoming more and more deficient in life-sustaining vitamins , nutrients
and macro-nutrients (proteins and amino-acids)
This is an extremely serious health situation, which soon will become a crisis, if not addressed right away!
If I were you, I would go ASAP to a Naturopathic Doctor who is experienced in nutritional IV therapy.
The nutrients in the IV solutions are absorbed directly by your cells without having to go through the digestive process.
You are likely suffering from Leaky Gut Syndrome, where intestinal permeability is allowing unwanted larger molecules (usually undiagested or
partially diagested) to enter the blood stream. The immune system considers these as invasive since under normal conditions are not present in the blood and it triggers an immune reaction.
Life is never the same with LGS , unless it gets corrected.
Yet conventional medicine (I'm appalled)
does NOT consider LGS as an "established" diagnosis and should this indeed be the case for you, this is the reason you are (unnecessarily) suffering so much.
There's a simple urine test available for Leaky Gut Syndrome: mannito/lactulose test or PEG
There are other possibilities, like low stomach acid, low enzymes, H. Pylori
infection, ammonia toxicity in the G/I system, Candida, kidney and/liver dysfunction,magnesium deficiency and many more, however most of these are inter-connected to each other and to leaky gut as well.
I'm certain that some of the above have not been ruled out, or the testing was inadequate/flawed.
Please let me know if you need any more details on anything at all,
however, my comments and remarks are not intended as a replacement for medical advice.
PS. Sorry about my ranting, but it is hard for me to understand
and accept the degree of Dysfunction and Incompetence in our so-called "Health Care" system!
Wow, thanks Niko,
You really seem to know what you are talking about, and it makes sense. I really appreciate your reply. It turns out I do have B12 deficiency and have started on sublingual B12 today. I also now have mild hyperthyroidism and they are going to recheck these labs in a month. I am scared about what you said about this becoming a crisis and I plan to find a naturopathic doctor in my area(florida). Could a nasty virus have triggered LGS? I know I should now probably see a GI doctor but I am now terrified of invasive tests and I have terrible allergic reactions to IV's, even just with saline only and no medicines delivered.
That said, I have to do something about it and about protein. I'm getting 20 grams a day and I know it isn't enough. You have given me a lot to think about, and the hope that maybe some day I can tolerate meat again. I will be making some calls Monday morning. Again, thank you so much, and I will be in touch!
Your B12 deficiency has 2 possible causes.
1. Low stomach acid (* highly suspected in your case) causes a deficiency in Intrinsic Factor, necessary for vitamin B12 absorption.
2. Inadequate B12 sources from diet (affirmative in your case).
You will do better with Methylocobalamin B12 which does not need conversion
AND you will also avoid nervous system Methylocobalmin B12 deficiency-which does not show on the standard MMA test.
Yeast imbalances, candida Infection, excessive sugars and carbs in the diet,
gluten sensitivity,stress, viral-bacterial-parasitic infections,
medications, alcohol, transfats, low gastric acid, toxins, are all possible factors in Leaky Gut Syndrome to my opinion.
I'm glad in a way that you won't see a G/I doctor (at least for now), as I think the simple urine test for LGS (as I mentioned in my previous reply) might serve you much better at the present time, than opening a Pandora's Box by seeing the G/I Doctor.
It is best if you work with a Natural health professional like an ND ,as you mentioned.
On your own you can self-test for:
Candida (saliva test),
Low gastric acid (baking soda burp test OR the Betaine HCL challenge)
Not diagnostic, but indicative enough, so if positive, considering your
symptoms and condition, they might be as a good as diagnostic!
Have you tried Undenatured whey protein powder?
Unlike casein, whey contains cysteine rich proteins: alpha-lactalbumin, beta-lactalbumin, serum albumin, lactoferrin and immunoglobulins - generally refered to as "lactalbumin" that remains soluble in whey after separation from casein.
These proteins are easily digestible and for this reason earned a reputation of an effective protein supplement and one of the best ways to raise Glutathione (the Master Antioxidant) production.
If you go to pubmed dot gov and search on ‘glutathione’, over 80,000 articles are listed! Not a typo!
It is worth a try and I wish I lived close to you and give you some, as I buy it
wholesale/bulk from a producer in Quebec.
It MUST be undenatured with no additives and no flavoring
and you cannot use a blender or heat! It will destroy it's delicate chemical structure, if you do. Just use a mini whisk when you mix it in a natural vegetable/fruit juice of your choice and tolerance.
I hope you consider this and if you do, I hope you can tolerate it!
Please stay in touch and let me know how things work out for you.
If you do have ANY questions, do not hesitate to ask .
I'm quite resourceful and well "connected".
You may message me anytime. if you prefer.
Sorry I forgot this:
Hyperthyroidism would be the last thing I would suspect, but I guess it is possible.
Here's another explanation which sits better with my analytical medical mind
--Hashimoto's and Hypothyroidism often can exhibit signs and symptoms of Hyperthyroidism.
-- Ongoing Biological stress, very suspect in your case, does not support
sustained hyperthyroidism and is more consistent with high cortisol levels at first and phasing into fluctuating with high- low cortisol and ending with low cortisol.
--- Thyroid hormone conversion T4 to T3 is inhibited by the high cortisol causing " T4 thyroid hormone pooling" in the blood as T4 cannot be used by the tissues (only T3 can be used but not always as it is subject to a few conditions) and the body response to the excess T4 is creating Reverse T3!!!
----This is also consistent with cases where there's low iron & low gastric acid.
--You're a good candidate for BOTH scenarios!
Confusing at first? It's OK. Please read on.
What type of thyroid tests did you have?
If you had serum T3, T4 and TSH, they are NOT necessarily indicative of cellular thyroid function.
Under the aforementioned conditions they likely giving inaccurate results.
The ones to get for accurate cellular thyroid function are: Free T3, Free T4
AND Reverse T3!
Insist on these even if you have to pay, otherwise you may be in perpetual Limbo, going by inaccurate results.
Any treatment in this case would be wrong and potentially dangerous
and nobody would know much about it to be able to explain it!!!
By now, you must have concluded that I like to get to the bottom of things,
specially when it comes to important matters like Health!
Time to sign off!
I don't know how to thank you! The protein powder you suggested worked well for me, and I had no immune response to it. Also, it is way yummier that plant protein.
but, here's the best news: I tested positive for H. Pylori bacteria, and will begin treatment for it today! After more than two years of suffering, debilitation, specialists and tests, I actually have a diagnosis that is treatable! I had resigned myself to living like this, and you, my friend took the time to help me. I wish I could reach through the internet and hug you. I'm literally crying tears of joy. I might get to have my life back, and my kids might now have thier mom back, instead of me laying around feeling like hell all the time. I am forever in your debt!
Thank you so much!
Oh, my goodness, that's incredible!
I'm so, so happy for you. This truly justifies all the time I put in replying to member's questions.
Well, you're not alone, I'm shedding some tears of joy right now myself and naturally have the urge to hug you, also.
I don't know about your proposed treatment, but certainly, some good quality probiotics are going to be helpful.
You can let me know what was suggested if you want.
Listen Jo, gotta run now, but, we'll stay in touch, O.K ?
The treatment for this H Pylori that I'm on is 14 days of amoxicillin (2000mg/day) and Clarithromycin (1000mg a day) and Prilosec once a day. I feel like my gut is the battle for Middle Earth. My mouth tastes like bug spray and I get nausea but I am determined to get rid of it. I have a good quality probiotic but I feel like I would waste it trying to take it now as the antibiotics just kill everything. What would you do? Also, do you think I will be able to eventually eat the proteins like meat and fish again? I have had immune reactions to them and I worry my body will continue to attack them.
You have been such a help, Niko, thank you so much!
So, you're not sure about taking abx and probiotics together.
Well you're right... partially!
Don't take them at the same time, but take probiotics as far as apart from the antibiotics as possible.
The effectiveness of probiotics in reducing the side effects of antibiotics and
preventing gut infections has been shown in many studies.
S. boulardii is one strain which cannot be damaged by antibiotics (it is a
yeast organism,not a bacterial organism) if you want to consider it, as part of the mutli-strain probiotic to take.
Once you eradicate the H.pylori, you must give a chance to your G/I and digestive system to heal well, before slowly re-introducing "hard" proteins.
This is going to be a trial & error approach with a lot of tweaking and adjustments till you reach the desired result.
Avoid excessive insoluble fiber while your gut lining might be compromised,since you don't need any additional irritation there, lol!
Prebiotics also promote the growth of your healthy flora, while and after you're on antibiotics, but like anything else, start with the minimum dose.
I'll check the abx you're on (I'm not so knowledgeable in Pharmacology)
and see whether there's a preferred probiotic/prebiotic option.
Things will eventually work out.
Love & Light
Doc left me a phone message saying initial blood tests for H Pylori indicated infection but stool test just came back negative. She says I must've had a previous infection and to go ahead and stop taking the antibiotics. Wtf? I have a week to go and I'm having awful side effects so I'd love nothing more than to be done with them, but I'm scared she is wrong and that I should take the rest of the prescription. If it isn't H.Pylori, than what? I'm confused and scared now. Would you keep taking the antibiotics? Can that test be wrong if it wasn't handled right? I did have all the symptoms of H. pylori: gnawing pains in my gut, nausea when my stomach was empty, loose stool, symptoms of leaky gut...plus my step daughter who lives with us was diagnosed and treated for it around 2 years ago, before I started to have these symptoms. I called my doctors office and left a message that I have questions but no return call. I called GI office to see if they could get me in out of desperation, and they have NO openings until end of September. Is there any advice you can give me once again? You are the only person who seems to care about me right now.
The medical system sometimes "S***s"
Not to worry too much.
A negative stool antigen test does not always mean that an H. pylori infection is not present according to Web MD, even if it's accurate
over 90% of the time.
I think that false negatives are much more common than false positives,i.e
it would be easier to miss the antigen in a stool or blood test than incorrectly detect its presence.
So my suspicion is that your blood test was accurate and the stool test was
a false negative, unless the stool sample was taken AFTER you started the antibiotics (highly unlikely that they would mess up like this, but again
The worse case scenario is that you finish the abx treatment, while taking probiotics AND extra virgin coconut oil (great antifungal) 2-4 T daily
and put up with the unwanted side effects.
Try not to stress too much over this.
The system is impersonal and uncaring, but once you take health matters
in your own hands, it feels great.
Trust me I know, because at one time, I was where you are today.
Jo, it's sweet of you to say this about me, but , truthfully, all I mentioned to you so far, would be exactly what I would do, if I were in your situation.
Love & Light
I wanted to give you an update. I made it through the triple therapy course for H. Pylori ( Clarithromycin,amoxicillin, and Prilosec) and although the side effects were horrendous, I felt better than I had in a long time after I was done. I was even able to eat some normal foods and digest them without side effects. It has been a week now, though, and I feel all the symptoms coming back with a vengeance. nausea when my stomach is empty, gnawing abdominal pain all night, bloating after I eat, gas and loose stools.
I am terrified of going through all those antibiotics again, especially if it doesn't work.
I didn't even bother to call my doctor because I feel like she doesn't listen to me. So I did some looking around online and read about this tea called matula tea that is supposed to eradicate H. Pylori. It is expensive and only sold by one company. Does anyone have experience with this? I also ordered mastic gum capsules as it is supposed to be helpful. Does anyone have any advice? Thinking maybe I will post in a GI forum also.
Hi Jo. So sorry to hear about your recent experience.
There's a possibility H. Pylori may not have been eradicated completely
and your short term improvement was just a H. Pylori retreat.
I have never heard about this matula tea, but if the seller checks out OK.
in the event it does not work for you, will they offer a refund?
The problem people have sometimes is that some companies will refund only one container, one month supply or whatever; but what if the treatment requires longer time. Find out if their warranty covers this.
I declined purchasing a supposedly superior quality mutli-vitamin, with guaranteed effectiveness if taken for two months (I think), because they only refund one month-supply, if not satisfied! Useless warranty.
I heard good things about mastic gum.
Interestingly, I'll be in Greece Wed. (for a month) and I'll be purchasing some Chios Masticha, which is claimed to be the best mastic gum in the world, if you want to look it up!
I hope, whatever you're trying is going to help you.
Keep me posted how it goes
Gotta catch some ZZZs. Flying tomorrow.