Needing to find something to help

I have asthma. I grew up on a farm. I have what I call severe allergies. My allergies are nothing like yours. I can function. I suffer from some IBS from it. I think my body just produces tons of histamine. Histamine blockers seem to work to some extent. I did have the allergy skin testing done when I was younger. I have not had the food testing done. I dont know the answer but I will say that dogs make mine much worse. Cats particularly. I cannot have a pet in the house. I would not be able to function living with dogs on a sailboat. I think my wife has thought ok then you sleep outside.

Hello @joeclark, I want to add my welcome to Connect along with @tuckerp and others. I can't imagine how difficult it must be to get healthcare when you live on a sailboat and move to different ports along the coast to stay ahead of bad weather let alone providing for the schooling and needs of your 5 year old. I'm hoping you get some answers at your upcoming rheumatology appointment.

I'm not sure if you have seen these resources but thought I would share them with you to see if they might provide some suggestions.
-- Considering a Liveaboard life - Residency: https://www.cruisersforum.com/forums/f74/considering-a-liveaboard-life-residency-286160.html
-- U.S. State of Residency while cruising: https://forums.sailboatowners.com/threads/u-s-state-of-residency-while-cruising.138278/

@joeclark reading your post I see two possible problems right off the bat with your living on the boat - being confined with your dogs in a small space (considering dander is one of your problems) and vestibular problems (possibly being caused - or exacerbated - by the constant swaying in your boat).

My daughter has severe anaphylactic allergies to everything including your list (minus dogs, cats and peanuts .., yeah, go figure!) and she finally was put on monthly Xolair injections which are helping a lot. Perhaps you could ask some doctor to prescribe that for you …? But again, being “Stateless” you might have a problem getting a prescription for it, because Xolair has to be administered in a clinic or hospital.

Could you ask to be put on a waiting list for a cancellation, so you can get an earlier appointment date with the University of Michigan?

This link, provided by @johnbishop is worth looking into - but I do feel the dogs and living on the boat are compounding your existing problems. In fact, living with dogs may be the underlying problem …? Just my two cents’ worth. 🤷🏼‍♀️

U.S. State of Residency while cruising: https://forums.sailboatowners.com/threads/u-s-state-of-residency-while-cruising.138278/

@joeclark Welcome to Mayo Clinic Connect! Members of this group will give you tips and point you in the right directions, but no one can tell you straight out what to do. I see that members have already given you some suggestions to follow up on. Have you thought about going to the Mental Health support group? Here is a link:
https://connect.mayoclinic.org/group/mental-health/
The members there may be able to give you suggestions on handling the major change for you and your family.
What is your #1 priority when these groups for help?

So for the most part I can find near total relief from my issues by changing my environment. The boat is a pain and the rocking can be annoying but for the most part as long as I keep the hatches open and stay near the ocean my issues just go away. I do not have a good explanation aside from the fresh air must be devoid of the triggers for one reason or another, I suspect the distance traveled over the ocean has cause the particulates to filter out.
I am on a cancelation list but that may be problematic as we are starting our southbound transit from the Carolinas to Florida to hide out for the winter. When I did my allergy testing fortunately there was not a positive reaction for the dogs, they are family however and I cannot justify leaving them, so this situation just has to work for now.

joeclark, God Bless You. Have you tried allergy shots? Have they recommended taking antihistamines? I have a lot of allergies, but, not to your extent and I do empathize. Allergies are tiring, cause rashes, headaches, sinus infections, itching, asthma, etc., Mold allergies are especially hard.

Praying for you to get some relief. There has to be someone to help you. Blessings & Prayers right now for you.

Your situation sounds like the ultimate challenge but you have found some solutions that work!
I’ve had much better success being a pest and calling the clinic frequently for a cancellation rather than waiting for them to call me off the list. Office staff will usually give you an available appointment while they have you on the phone. There are three kinds of antihistamines that might be helpful when you need them. Histamine one blockers are like Benadryl or the nondrowsy Claritin and Allegra. That’s usually the first line of defense. The second group are histamine two blockers, which are usually used for excess acid in the stomach such as Pepcid, but they potentiate histamine one blockers. The third type is, antihistamines that help with motion sickness like Dramamine or Bonine. Those would be particularly useful for the vestibular symptoms that might be triggered with the boat rocking. All three can be taken together to get the most benefit. Nasal decongestants like Sudafed and nasal steroid sprays like Flonase can open up the eustachian tubes. I always use the generic equivalents to lower cost.
Your severe arthritis does suggest a possible autoimmune disease, as well as allergies. I am glad you are pursuing that idea at a university clinic setting!
You have gotten excellent suggestions here and I so hope that these pay off for you!

I think you have some serious allergies. You for the most part have figured out things that work and things that dont. I think a one shot answer is probably going to be hard to find. As I and others mentioned histamines help me. But merely help for the moment not cure. I have genetic high cholesterol, A1C runs a little high, BP borders on high normal. I go to the Dr and get all the testing and wonder if there is one thing to fix it. Yet I know I could lose a few pounds. I know I should eat more foods that are better for me. I know that I should do more aerobic exercise. You and your family have given up quite a bit but there may be some answers in your chosen path.

I have taken immunology serums via SLIT which started to cause reactions and the doctor's office removed me from them. I have been on allergy medications which have not proven to be fruitful at all so far. It seems that the only med to work so far is 20mg of prednisone daily, I am in my mid 30's and am not interested in dealing with the side effects of long term steroid use at this age.

So fr the antihistamines and meds. I was on daily Flonase and Sudafed in conjunction with Zyrtec, this offered little to no relief. I have tried aleve and other meds and they never seemed to help much. For the nausea I have found that a certain "herbal" remedy was the only effective solution at times even when I was taking the sublingual medicine (sorry I can't recall the name but it is the most common out there). The allergists and I believe that all these problems are being caused by an autoimmune problem but to paraphrase him there is no treatment currently available so there is nothing that can be done until more research is available. When I visit other specialists for immunology or rheumatology they just tell me to keep doing what I am doing which is nearly completely avoiding the allergens. The rheumatologists at the Spectrum Health clinic were not helpful though. I was provided with the product information for four medications and instructed to pick one. I tried half of them and they caused significant side effects such as skin burning and pealing. A third had nearly killed my sister, and the fourth was terrifying and even taking it for a short time was potentially going to cause decades of side effects. The rheumatologist had stated to me that these were "the only" medications available. They refused to do any form of testing or examinations, which made no sense to me.