Been a while since i've posted on here, but im always lurking and researching. The past few months I haven't really gone anywhere with my progress except slowly down or back to the middle.
My worst symptoms are still brain fog (detached, depersonalization, trouble concentrating) fatigue and bad muscle weakness. I am diagnosed with Dr. F's bug and I am currently seeing him, have been for over a year.
I've been steady on biaxin/plaquenil for 7 months now, before that was zith and many other drugs. Regardless i've been on abx for over a year and a half and going nowhere.
I've been to almost every doctor in the book, neurologist, infectious disease, internal medicine, I guess im looking to try out some new doctors, as much as I don't want to.
But i wanted to ask here if anyone had any luck what so ever with Hematologists, or Immunologists, Pathologists anyone in this field?
I have lots of faith in Dr. F and he will always remain my primary care doctor and I will stick with his decisions, but i'd like to take some more approaches while im playing this yearly waiting game.
I haven't been to an endo but i've had most tests an endo would run so i don't think I need to. Im thinkin Hematologist or Immunologist just to see if there is anything else going on with my blood or immune system in general, probably a dead end or a "its all in your head response" but its worth a shot.
I recently started seeing a psychiatrist a brain egg showed major depression and anxiety so im back on lexapro, and remain on klonopin which i've been on for over two years.
thanks for any input you can give, i appreciate it.
trevor
Posted by ott70 (Member # 18237) on :
I saw a hematologist, who is typically also an oncologist, and all he was interested in was checking for cancer. Real nice guy, but he had no interest in checking for Lyme disease or co-infections.
Posted by Haley (Member # 22008) on :
Have you treated for Babesia or Bartonella? I also have this brain stuff like crazy. I just saw a new LLMD and I told him that's all I care about fixing, once that is fixed I'll be happy. I'm in the process of taking tons of tests and we'll see what happens. He is a believer in HBOT for brain stuff. I may give it a try.
I really don't know if seeing other types of doctors will help. I am going with trusting my new LLMD. Let me know if you make any progress.
Posted by Trevor1 (Member # 15489) on :
I tested negative for babesia and bartonella through Dr. F, all he sees in my blood is this bug of his.
Posted by Trevor1 (Member # 15489) on :
I would avoid Oncology, and look for a straight Pathologist.
Posted by Robin123 (Member # 9197) on :
Curious - how does Dr F treat this bug? With the abx you mentioned? Do he/you see any test result changes?
Posted by Trevor1 (Member # 15489) on :
He likes biaxin/plaquenil, he is working on biofilm studies and more research is constantly going on.
Posted by seibertneurolyme (Member # 6416) on :
Trevor,
I wish I had an answer for you. Hubby is pretty much in the same boat, but it has been over 8 years for him.
He has positive slides from both F lab and Clongen.
Personally we are waiting for the new lab in Raleigh, NC to open in the hopes of getting an ID on this bug. In the meantime, we continue experimenting with meds and herbs.
The problem is that whatever hubby takes that seems to help stops working within a few weeks and we are back to square one.
Do you have elevated bilirubin on your bloodwork?
Hubby is stuck with oral Ativan and IV Phenergan to control his tremors, myoclonus, and dystonia. The doses change depending on how well the current antibiotics and herbs are working.
Bea Seibert
Posted by seekhelp (Member # 15067) on :
Hematologists are useless outside of cancer. I wouldn't bother unless you have labs indicating obvious issues with iron, anemia, etc. They don't care about TBIs and certainly aren't inclined to look at other issues.
Posted by AnnaL (Member # 18464) on :
I saw a hematologist when I was trying to figure out what the heck was wrong with me. (Curses upon the ID doctor who refused to test me for Lyme, back when I'd been sick for only a month!)
The hematologist I saw was wonderful. It was fairly obvious that I didn't have cancer (thankfully), so he focused a number of other possibilities.
He spent at least 30 -45 mintues with me, disussing my lifestyle, history, etc. Then ordered 30+ labs, all of which of course came back normal.
When I returned to discuss the results, he said that the good news was that my labs were normal, and the bad news is that he couldn't do anything else to help me.
All in all, a positive experience as I eliminated a host of possibilities that further narrowed the field.
I guess--like just about any other specialty--a hematologist cannot be a better doctor than s/he is a person. I was lucky enough to see a good man and a good doctor.
He didn't test for infectious causes, since I'd already seen an ID doctor (and an ENT and an allergist/immunologist and the list goes on). He tested me for things under his area of expertise.
Anyway, that doesn't answer you question of whether or not you should consult a hematologist, but my experience is all I have to offer.
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