Thanks for posting your query.
I am Dr.RK and I am pleased to assist you. I went through your post.
I am sorry to hear about your health issues. Your oxygenation being normal is a good sign.
As I am unable to examine you personally , I will need you to tell me a little more about your condition.
1)You have mentioned that you are having difficulty in breathing, is it even in sitting position? Or do you feel breathless only after some amount of walking in the house or after small amount of physical activity?
2)Can you specify what other symptoms you are having and what foods precipitate your condition so that I can advise you on what you should consume.
3)Are you feeling dizzy?
In the meanwhile if you feel worsening of your condition, like sweating, gasping for breath, feeling faint,or hyperventilating (breathing rapidly) please call the ambulance and rush to the hospital immediately, as it will require immediate treatment.
Please reply as a follow up.
Patient replied :
1) I get breathless from specifically standing in a sitting position, if I lay down in bed it gets easier, I don't do physical activity anymore because I am too weak do any but oddly enough I don't think physical activity makes it much worse(hard to say, I haven't tried in a long time)
2) I tried all sort of diets, Elemental diet (whey,dextrose,coconut oil) it worked well for 2 weeks until I started becoming intolerant to the whey. GAPS,SCD. I cut down to the very basic of trying vegetable soups, eating only buckwheat or only coconut oil. It always work until I become intolerant to the food and my intestine feel hugely inflamed and I look regnant after eating but the worst triggers has been gluten and grains even non gluten grain and meat even chicken and fish as the lesser one. Btw even at day 4 on my fast, my digestive organs are pumping like they want to explode, its like I have a heart in my intestines. I can feel my heart rate more from touching my intestines then touching my own heart
3) I get dizzy sometime I get numbness and tingling in my extremities or full arm and legs I am on day 4th of my fast and it's no worse then usual.
4) Last night I had a very severe symptom, it is one of the first symptoms I had before all the digestive and fatigue issue. I Constantly need to urinate, usually this happens at night, it feel like the laying down position makes it worse, but last night was incredibly intense, I had a urge need to urinate despite having only a few drops of actual liquid inside. I had to take a xanax to fall asleep not because I couldn't sleep but because the urge to urinate was incredible. I been dealing with this for over a year but usually i could deal with waking up every hour, last night the urge would come back RIGHT after peeing, it was unbearable.
Thank you for the reply.
The symptom set you have mentioned here does not pertain to the gastro intestinal system. The cause could be an underlying cardiovascular , rheumatological or neurological problem.
The fatigue could be due to heart failure or rheumatological disease. The digestive symptoms are probably unrelated and it is not the first concern here. The frequent urination could be from a infection in the urinary tract.
The approach to these symptoms should be in a step by step manner. This should involve :
1. Complete Blood Count
2. ESR, CRP, ANA
4. Chest Xay
6. Pulmonary Function tests.
Based on the results of above tests , other tests can be considered at a later stage. Trust me your diet has nothing to do wtih this. I would recommend you to take a normal diet (Except milk and milk products). Considering the multidisciplinary nature of your problem I have assigned your consult to a Internal Medicine Specialist who will co ordinate all the consultations. If possible please share your blood investigation and imaging reports. You can email them to [email protected].
Your Personal Physician ID is [email protected]. You can also email him directly if required .
Patient replied :
I will have to get my breath checked but what more can you tell me regarding my gastro intestinal symptoms? I started getting the symptoms 9 months ago where I just felt bloated at first followed my constipation. Back then I tried cutting out all the triggers, coffee, peanut butter etc... It helped a bit but then quickly came back, my doctor suggested I cut gluten so I went gluten free completely for 3 months. I only noticed a relief in the first 2 weeks and then it came back, I would get huge cramps and spams of all kind in my intestine, I felt bloated and starting being so tired that no amount of sleep could help me.
In 3 months I went to being perfectly healthy exercising 3 times a week and in perfect shape to being bed ridden and having food intolerance of all kind, intestinal spasms and cramps, constipation, brain fog, difficulty breathing, neck pain, extremely sensitive body, couldn't tolerate caffeine or anything anymore. I also get major cramps when I smoke marijuana which is odd but I figured I would mention it, I do not drink alcohol coffee or smoke anymore my diet at the moment is restricted to vegetable, some fish , some nuts.
I found relief at some point by eating only soups which actually had some barley in it and I was getting better for the first time in 3 months, then I added the only food I could tolerate, fish, sunflower seeds and buckwheat. I could exercise again but then I became intolerant to fish then to veggie then I just had to find a new diet again. I changed my diet so many times because I always end up becoming intolerant to anything I eat, no matter how healthy it can be.
I again found relief one last time when I did my own elemental diet, whey protein powder, coconut oil, dextrose and multi vitamin, it last about 12 days then I became intolerant, I had severe feeling of inflammation in my intestines(this is the feeling I get when I become intolerant to a food).
I got tested for just avoid everything STD, Anemia, infections, parasites, blood test of all kind, celiac and so many different scans (colonoscopy, barium, etc..), I got tested in so many ways for IBD and there is nothing there, I NEVER get diarrhea or rashes. I do get headache all the time with dizziness and low grade fever often. I also always have this feeling that my intestine are about to explode, I can put my hand on my intestine and there is a pump, even after 4 days on a water fast I could still feel all my digestive organs pumping, liver and stomach but its mostly present in my intestines. I seen over 6 doctors with nutritionist and gastroenterologist, they all think it’s in my head or something, I lost over 40 pounds during those 9 months and I am ALWAYS hungry.
I tried all the stuff out there, probiotic, supplements of all kind for leaky gut, gut dysbiosis, Small intestinal bacteria overgrowth but nothing can explain all those significant symptoms. I looked every possibly and nothing makes sense to my symptoms. I am desperate for an answer.
Since Inflammatory bowel disease has been ruled out, the symptoms are more suggestive of Irritable Bowel Disease. I would recommend you a one course of antibiotic like Rifaximin for 1 week (in consult with your Doctor) + Anti ulcer medication like Prilosec. You CAN and SHOULD take a normal balanced diet . At best you can avoid gas forming food items and milk. DO NOT take any supplements. This should set your intestines in good equilibrium. If you have any more symptoms we can have a symptom based approach at that time. Rest of your (non Gastro ) symptoms are best managed by your Physician.
Hope this helps
Patient replied :
I tried a lot of stuff out there and surely you would think by my post that a "normal" diet is not going to fix all my symptoms, I don't want to take meds for anti ulcers when I don't have ulcers and to take antibiotics that will ravage an already compromise gut flora, that's just asking for more problems. I realize I am not going to get an answer that is any better then free health here as it follow the same MD mentality of prescribing pills and doesn't think outside the box.
I spoke to Amy Joseph via the customer support because I wanted to get refunded and she asked me to ask directly to the doctor, so this is what I am doing now.