Hi Mike....u have quite a a list of symptoms. I was looking up some of the them online and won't go thru what ur dr. has already tested for. I saw something about Chronic Fatigue Syndrome (CFS) but that doesn't explain the thirst. Do u take Chinese medicine. You describe itchy face,trouble breathing sounded like allergies. CFS causes brain fog, trouble sleeping which leads to fatigue, low concentration. That being sad I would be depressed and I wouldn't be drinking, just my two cents and that's about all it's worth. Also while looking Sjogren's Disease came up..might want to look at that to but I don't think the symptoms exactly match. Wish I could be more help......good luck to you Mike
Peace
Debbie
Debbie,
Thank you very much for taking the time to try and help me out. I do not take Chinese medicine but will definitely take a look at Sjogren's Disease.
Thank you again,
Mike
Hey Mike,
You also posted at the A/I Community where I have already replied.
I will read your post again later and send you a supplementary reply.
The negative findings from some standard tests, are often responsible for many people being in perpetual medical limbo, as this changes the direction of the investigation for diagnosis.
Niko
I see you checked food allergies, so this may be a long shot. But I had been getting so tired I had to take naps.. Also had a terrible brain fog, as you call it.
I've changed to a low carb diet now. (Especially white bread and sugary stuff like candy/iced cream).. and within two days, I quit being tired, and the brain fog lifted... I feel 100% better. I can still eat a few carbs and continue to feel good. i'm not sure about your other symptoms though.
Thanks for the suggestion, I was on the Anti-Candida diet for two months which cut out basically all carbs. Was the healthiest I ever ate and even lost 15 pounds in the process... but felt no better. Very confusing but trying to stay positive and keep moving forward. Thanks for responding and I am happy you are feeling better!
I agree wiith jkewelz1987. Dounds like Lymes Disease. My son has it n took almost a year before dr diagnosised him.
Initially I was thinking Diabetes but tests prooved otherwise.
So Im stuck on presuming u may just have thyroid issues. As blood test for my nieces n I came back negative and an ultrasound was only way they found abnormalities. Unfortunately. All of us had cancer. So if u dont feel well, keep persisting and dint stop til u do !
I found my diabetes n tokd dr to check. And the thyroud I insisted in ultrasound snd found cancer there.
Sumptoms are scary sometimes and u need to persist the doctors etc to persist in tests til they find substantial proof of what condition u have. Brain fog, thin hsir, thin nails, constipation, trouble swallowing, sinus inflammation were all part of my thyca dymptoms. Thirst for me was the diabetes and thyroid.
I also was active with work n school n family.
Good luck and i hope you can feel
Better soon !
That's some symptoms! I would have thought diabetes. However, since that has been ruled out and diet seems to work...why not try a Gluten Free diet. I was not a believer in such things until my son came a long. He has a gluten insensitivity that does not rise to the level of celiac disease. He has concentration issues consistent with ADHD, extreme bouts of agitation, extreme thirst, and inconsistent reactions to foods that can give him diarrhea/constipation. We put him on a gluten free diet, and it all vanished within a day or two. It's worth a shot while you wait for your neuro appointment.
I took the liberty to copy and paste my original replies to this question
from the A/I forum, for (hopefully) the benefit of all, since there's more activity over here, and may lead to more discussion and who knows?
"Hey Mike,
Just a couple things and I'll continue later in another post.
Re: Candida testing.
--Stool testing will show if your levels of yeast are within a "normal" range,
a statistical model, which reflects an average of what is normal for many other people but may not necessarily indicate a level of yeast that is "normal" for your body.
---Blood testing. Besides allergic type of reactions, anti body blood tests will not reveal other types of immune responses and consequences in other body systems outside the blood circulation, which are also possible reactions to increased candida levels.
Should you indeed have candida which was not detected, 2 months of treatment and strict diet will not eradicate it.
It takes average of 1-2 months of strict treatment per year from the onset of candida (not the symptoms, as you may be unsymptomatic for years!).
Have you ruled out MTHFR gene mutation or other undermethylation issues?
Please let me know. About 40% of all people have this gene defect, which
affects them in varying degrees and ways.
Did you get a homocysteine test for Neurological B12 (methylocobalamin)?
The standard mma test for B12 does not show this.
It's related to undermethylation.
Polydipsia, which is excessive thirst and the resulting excessive water intake, is often caused by very high production of aldosterone ( adrenal hormone) and leading to very low potassium. This needs to be ruled out.
An endocrinologist or Urologist would probably the type of doctor to see for this.
Also Osmotic diuresis needs to be ruled out, as it is another possible cause.
You may have to see a Nephrologist (kidney specialist) or Urologist for this.
I'll post again more, but for now, you're welcome to reply and comment.
Continued:
Back to the genetic link.
This has to do with methylation processes as I mentioned before-a bit too technical to get into right now in detail, but basically the result is that when you have a mutation of the MTHFR gene, the corresponding MTHFR enzyme works at a much lower rate and one of the many issues that result from this, possibly pertinent to you, in relation to your sinus issues, is that histamine produced in your body does not get broken down.
And this is just of many consequences and if left untreated, serious diseases like MS or cancer can develop.
There are many possible mutations but you need to be tested mainly for
677 and 1298 , so you need to hook up with a knowledgeable geneticist
who can also treat you.
There has been considerable research that shows one or more MTHFR mutations may play a role in cancer, stroke, heart problems, congenital defects, depression, IBS , miscarriages, migraines, chemical sensitivities, schizophrenia-like syndromes, bipolar disorder, Parkinson’s disease, Alzheimer’s disease and more.
MTHFR Gene testing. One of the least expensive places for this is
23andMe, which will send you back "raw data" which needs interpretation.
No problem. If you decide for that , let me know and I can give you a couple links where you can upload the data and get the answers for free .
The good news is that it is treatable (to a great extend)
Should you have one of this gene's 40-50 mutations (it is actually quite common), please let us know which one.
Also, underlying infectious pathogenic conditions, such as mycoplasma, babesia, ehrlichia, bartonella etc, considering your medical history, have to be ruled out, as well, as they are A/I mimickers. The good news is that these infectious conditions are treatable!
Your doctors are not likely to help you with these.
Just do search here under Dr. Garth Nicolson, a part time contributor in medhelp and the world's top expert in these types of infections regarding
diagnosis and treatment
They are notoriously difficult to diagnose and to treat, leaving the majority
of sufferers undiagnosed or worse misdiagnosed as CFS,FMS and other conditions.
Hope this helps, but please note that my comments and suggestions are
not intended to replace medical advice.
Final installment:
23andme would be the one I would go with and when you get the raw results back
(no interpretation what-so-ever from 23andme, due to some FDA situation) you can go to the Genetic Genie for help regarding the analysis.
Just visit their website for details. there are other ones, too, but Genetic Genie is fairly straight forward.
TheNutrEval, is probably good, but not specific enough for your purposes,
in regards to your suspected genetic defect(s).
Keep me posted and I hope you get the answers you're looking for. "
Cheers!
Niko