Guest guest Posted September 24, 2008 Report Share Posted September 24, 2008 AFAIK, there really aren't autoimmune specialists unfortunately - there are sometimes specific doctors that will treat your symptoms based upon what organs/body parts are impacted - e.g., for Raynaud's, neuropathies, MS, etc. - neurologists are sometimes good. Internists as well are sometimes okay. Rheumatologists are often the most knowledgeable since autoimmune arthritis is very, very common. A rheumatologist that specializes in Lyme was the one that made me aware of how these infections can trigger auto-immune diseases (due to molecular mimicry and innate immune responses. Unfortunately, this doc is in the D.C. area. And, more unfortunately, I have yet to find a single doctor in the DFW area that really understands the spectrum of autoimmune diseases. Part of this is due to the fundamental fact that doctors traditionally are trained to only treat the end stage of diseases and few recognize the symptoms before the disease progresses to the point where they will even consider looking for autoimmune diseases. Of course, I suggest looking at the gluten issue, since it's believed by many of the research MDs to be at the root of many autoimmune conditions - again it's the genes - those determine which organs/body parts are impacted when the autoimmune reactions are triggered. There are 1578 articles on this topic in pubmed - many are very recent including one from August 2008 that uses the most up-to-date info from the human genome project. Nearly half the articles were published since 2000, which explains why alot of docs are totally unaware of this - again I'll get on my soapbox that since there is no drug for this, docs aren't taught in their CME courses - the majority are sponsored by big pharma. I know this isn't particularly helpful, but I fear he'll be on the endless merry-go-round for over 7 years before he can find a medical professional to consider this - 90 months is the average time to diagnose for folks with celiac/gluten intolerance - agin it's in the medical literature and that's end stage celiac. It's for this reason that I strongly recommend the enterolab test - even the $99 version will give you basic info (just no genes). Even the complete test is an absolute bargain IMHO. Good luck, B. > > My husband would like to see an autoimmune specialist since no one can > figure out what is going on with him. Can anyone recommend any docs? > Travel is okay, but we are in Dallas. > > > > Thanks! > > Grace > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2008 Report Share Posted September 26, 2008 Grace, I would definitely get him to Launius due to all his symptoms (even his neck pain is a hypo symtpom!). In my experience, the chronic infections (and need for abx) alone are a big red flag (and also point to the gluten issue That was me for 30+ years. Has he been measuring or can you get him to measuring his BBT in the morning? That would be a sure sign that he's hypo. Also, in my mind, the fact that he was previously treated likely means it's autoimmune (i.e., he improved for a while, but it's back! - that happened to my mom - unfortunately she seems to prefer taking a dozen Rx meds rather than thyroid). Good luck! . > > , thanks for your reply. > > > > He's been seeing neurologists, but they have only been able to do rule outs > and say they are stumped. He's seeing a physical med doc who is good, but > needs a good internist. > > > > I think he will go ahead and do the Enterolab test. I decided to do it and > shipped mine off a couple of days ago. I think I will also do my youngest > even though he's still nursing and in diapers. If we end up going totally > gluten free it would be nice to test him now before much more time passes > without gluten in his system. > > > > I also believe that my husband is at least a little hypothyroid. He hasn't > had his frees tested, but his last TSH was 2 something. He told me he was > on thyroid treatment as a kid or teen or young adult (not sure of the age). > We probably all suspect it is a lifelong issue and wasn't something from > which he totally recovered. I've also followed the posts about EBV since > he had mono as a kid and is always picking up colds and flus at the drop of > a hat. And he ALWAYS needs ABX to recover! Yet, I don't think he does > enough to recover from the ABX. > > > > I actually had an appt. with Launius today and mentioned something about my > husband. We got to talking about his situation for quite a few minutes. > Launius also strongly suspected some thyroid might help my husband ( with > some of his symptoms. The big weird thing is that he's been having muscle > twitching and there is a blood test that shows he is losing muscle mass or > losing protein from his muscles (also carpal tunnel). Launius mentioned the > muscle loss can be from hypothyroid. Also, since cholesterol is an issue > for B, I would love for him to see if thyroid treatment would help. I've > noticed the articles and comments here about thyroid and improvements in > cholesterol. > > > > Maybe even a visit to Launius would be a good next step. I know B is burned > out on doctors, but he is in a lot of pain due to some problems in his neck > and then is exhausted on top of that. I would love for both of us to get to > feeling better! > > > > Grace > > > Quote Link to comment Share on other sites More sharing options...
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