Lack of answers (and diagnosis) has me frustrated and stressed!

I can only tell you what has happened to me. 

In 1973 I traveled outside of the country and picked up a bacteria that my system couldn't fight. Symptoms for years were mild. Then twice I got severe food poisoning. 

After which I seemed ok. Then in 1982 I got chronic eye infections and noticed my scalp felt dirtier. Along the way I always had skin issues. I was always "under the weather"  Life went on without knowing what was causing it. 

In the 90's I heard about a clinic in Southern California. I started working on removing the amalgam so common in my generation and doing a cleanse. My teeth looked better butt still no help. The doctor wanted to run tests and included stool samples to see if I had an overgrowth of bacteria. I was prescribed 3 drugs and natural supplements. I felt better for awhile.

Since 2001 I've been on the drug protocol many times to keep bacteria low. It doesn't kill it only controls it. Pre and probiotics make me itch horribly as do most herbs. I have to stay off all fiber for long periods to keep from aggravating my intestinal tract. That means eating only rice with butter and ground turkey. Hot coffee only in morning. Nothing hot after. I never eat out.

But the best thing was when my doctor prescribed Xifaxan for 6 weeks. I stretched the last week to make 7 weeks. I felt so much better overall that I've now been on Xifaxan for 11 months. I still keep to a strict diet for now. In between all of this about 7 years ago I went to a place to do the 2 hour breath test to measure the bacteria. 

When I cheat I take ranitidine for H2 histamine relief to not itch as much.

Some foods make me more tired than others. I have a part time job so I have to be very good with self control or I'm too sick to work. I do use Excedrin often in half tabs if I want something different. Unfortunately it takes days to return to normal. I don't socialize because everyone wants to eat and I love food. My weight has been as low as 94 pounds but with Xifaxan I'm above 100 pounds and feel decent. 

Some doctors want to put me on more than one drug at a time but for now I'm not doing it. I feel no side effects with just Xifaxan. 

They told me recently that it's autoimmune now. Probably hereditary set off by the bacteria. 

Also I'm always inflamed but they say it's not rheumatoid arthritis. My sister traveled outside the country and has similar health issues and does have rheumatoid arthritis. 

She also had food poisoning with me. 

He food restrictions are not as severe as mine. 

Please consider Biotoxin Illness. All of your symptoms match. Biotoxin illness can affect all systems in the body and can mimic lupus. Normal blood labs will all come back normal. There is an online symptom checklist. I believe if you have 8 out of 13 then you most likely have Biotoxin Illness. You would also want to do a Visual Contrast test which is usually about 92% accurate in detecting Biotoxin Illness. If you find that your symptoms match the online list and have questions let me know. Hope this helps.

It can be mold in your home or workplace. It can also be triggered by Lyme disease if you were possibly bitten. Pfisteria from fish or the ocean is another possibility. Have you ever had water in your basement or a leaky roof? Or possible people who lived in your house before you. It may be something completely different but Id still check the online symptom list. BiotoxinJourney .com has an easy test you can take to give you an idea if this may be causing your symptoms

Hi Carrie I have been in the same situation as yourself it’s very frustrating. I had tonnes of trips to doctors we’re they miss diagnosed me. I got referred on to a nutritionist she then told me I had parasites and a leaky gut of course when you it’s not from a doctor you don’t know who to believe. I have been taking supplements such as L glutamine digestive enzymes and zinc. I have previously had symptoms which o could barely get out of bed from but I’m slowly getting energy back, not fully there but definitely better. Have you ever considered this to be the case for yourself? 

Thanks shaun

Well 3 Dr says Sjogren's Syndrome and 3 Dr;s tells me no all blood work Neg Who knows anymore

Hi carrie,

I think we have all been in your situation at some point wondering what is wrong. The fatigue and alot of your symptoms mimic many AI diseases. I would keep seeing your Rheumotologist and if nothing comes from it, switch to another. My sedmentation levels were high as well as my Rheumotoid factor. Did they do an ANA?

Hi Carrie, I am so sorry for all that you are going through with your medical symptoms and doctors. It can be very frustrating. I started to get sick in the beginning of 2011 & after some time started to believe I was crazy, because it made more sense I was mental, then I was sick during quite a few times on my journey. I actually thought, "Maybe I had the ability to alter my lab & diagnostic tests? That could explain why these smart docs were so confused at my results & couldn't diagnois me!"

From 2011 to until 2016 to finally get a diagnoisis, couldn't even tell you how many doctors or specialist I had seen. Yet, I believed if I had a name for what I had, it would all make sense, but it only led me down more "rabbit holes". I have Common Variable Immunodeficiency, Mastocytosis, Autoimmune Urticaria, B12 Deficiency, D Deficiency & Spondylitis. Each one is complex, rare, & seem to overlap with symptoms & very odd test results. My Specialists at Mayo, a speacilty hospital in the United States explained that it was difficult for doctors to diagnois me, due to the fact my conditions were systemic & rare. Even the Mastocytosis is still 20 -50 years away from the reasearch needed to truly understand the condition, possible treatments, or even hopes to find a cure, per my doc's at Mayo. 

My point is this, your are on a journey right now that is tailored specifically for you. It is a long & difficult journey & you are your only advocate. Your Anxiety will be through the roof, so you have to find what relieves it for you. For me it was journaling, gardening, walking on the beach, sitting in nature, yoga, meditation, even online shopping without purchasing all the goods. I also keep copies of all my labs, diagnostics, & medical reports in binders & bring them to every doctor appointment. I journal daily my symptoms, new foods or experiences to see if patterns emerge. Once I began to put all the results in chronological order over the years, it made it easier for the specialists to see the patterns that helped them to diagnois me & begin the treatments. Point is, whether you figure it out or not, the anxiety will still be there, you are the only one who can determine what can help release that anxiety, calm your mind & bring you Peace, not matter what lies on your path. Good luck Carrie. I am here if you need me.