Will it ever get better?
Hubby has been tested and treated for many many things -- parasites, leaky gut, casein allergy (another milk protein besides lactose), gluten intolerance or celiac, candida and the list goes on.
The CDSA test from Great Smokies Lab is a functional G.I. test and will tell whether you have enough good bacteria and it indicates whether you produce enough bile and pancreatic enzymes as well. See http://www.gsdl.com
In my opinion, the best doctors for G.I. problems are ACAM doctors (American College for Advancement in Medicine). See http://www.acam.org Click on Public and then Find a Doctor
Gastroenterologists usually do not have a clue.
There is an ACAM doctor in Roanoke, VA I know of. Hubby has not been to her as we went down the road in the other direction --from Martinsville to Greensboro, NC to see old PCP who had moved practice -- to find a new primary care provider when we moved back to VA.
Another possibility is of course Bartonella -- Dr B on Long Island treated hubby for this based on a clinical diagnosis -- primarily G.I. symptoms which included chronic gastritis found on 2 endoscopies within 1 year.
Parasite treatment made the biggest difference for hubby.
The ACAM doctor in Roanoke has a website -- link from ACAM site. May be able to help with Lyme as well, but I have no idea how good doctor is or what doctor knows about Lyme. UVB treatments with this doctor could possibly be an option. Hubby has had 3 with other doctors in past and felt may have been of some benefit.
If you decide to see this doctor, please email me with your experiences.
Bea Seibert
If you do have an endoscopy make sure they test for yeast. Yeast from abx (and my child has diabetes) was the cause of her problems, and was clarly visble as well as biopsied at the endoscopy.
So leaky gut from yeast was causing her reactions to food, both Gi reactions and systtemic (many of which we were blaming on Lyme, such as weakness, dizziness, etc.).
This type of food reaction will not show up in a blood test. An elmination diet follwoed by "challenging" one food at a time, to evaluate reactions to single food types, then helps diagnose.
My daughter had dramatic reactions to both the elimination diet (improvement) and to the challenge w/milk (sick), her first and only challenge so far. W wre amazed.
She had fluconazole for 7 weeks as well, and may still have more.
The fact that your doctors are not thinking about Lyme means they are also not thinking about yeast (from Lyme treatment) so chances are "leaky gut" isn't on their radar. It may not be on a LLMD's either, frankly.
I am surprised to find myself recommending this, since I was formerly so conservative, but I would suggest an alternative doctor of some kind...board certified, alternative doctrs who are covered by insurance are hard to find, but they exist and we found one who is very helpful.
Forgive me if I am repeating myself. Oh- and if gluten is a problem, and you are really not celiac, then leaky gut is a good avenue to explore. Intolerance of gluten is a common problem for many people who are not celiac. Celiac disease is autoimmune...while food allergy is "mediated" by the immune system, which causes inflammation, but does not involve attack on the villis of the intestinal lining by one's own immune system. It's still real.
I am sensitive to gluten, but not a celiac, although my mom is. I cannot guarentee the accuracy of the testing as it is not FDA approved.
I can't find my old docs.
I have gotten to the point now that I am just always tired. I can't blame the baby now because she has been sleeping through the night.
There is something going on with me for sure. I just have to find some one to help. I will just have to call my old ID doc back and see if they can recommend someone I guess.
Anyway, I've been off wheat for over a year and I am so much better. I'm absorbing minerals again and kicking this dreaded disease.
Giving up wheat seems like a big deal in the beginning, but after awhile it isn't. Now if I eat pasta or store bread they don't taste good.
Think about this. We don't feed livestock large quanities of wheat. They don't do well with it. Why would humans do significantly better?
Eat well and heal.
Mel