posted
Hi friends- first I just want to thank everyone out there who responds to my posts and has been patient with my struggles. You all mean a lot to me and I would be 100% more lost without this board.
I am now seeing a new LLMD in CT. It sort of feels like we are starting from scratch as I took the last month and a half off while waiting for an LLMD appt.
I am now going to do 14 days of doryx, 150mg twice a day ( I am on day 10). I will then switch to tetracycline which I have never taken before. I am not sure of the plan after that, other than treating for a LONG time, but I know this doc wants to add cyst busters after MONTHS of monotherapy that I am adjusted to.
He says I am a tough case- I have been sick for 15 years undiagnosed until April2010. He also says that because I was treated with massive immunosuppresants for what doctors termed "nonspecific inflammatory bowel" and "nonspecific autoimmmune disease"...I am pretty screwed.
He is realistic and I like that.. but I feel rather hopeless for any improvement because of these two strikes..
Posts: 341 | From NY/FL | Registered: Apr 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I can't comment on your treatment protocol but I sure hope it works for you. I am glad you found a LLMD - that is too bad about the steroids. Don't forget co-infections.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thank you. Yea, I collapsed pretty hard from a protocol that overwhelmed my system. The new LLMD really HEARD that and took it into account.
Nobody can tell me what coinfections I have, but this LLMD mentioned treating for babs and probably bart at some point. (Quest labs were negative though I know this means nothing).
He also mentioned that steroids allow for the bacteria to go deeper into your organs.. and also allow for entry in some more protected organs like the pancreas... Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Hello. I have had undiagnosed Lyme for years. I had a positive blood and spinal fluid test back in 2009. I have crohns for over 20 years and was told I had lupus back in 2006. I have been on prednisone all of my adult life....I was on a maintenance dose of 5 mg , but on 60 mg at times . I was also on imuran, remicade, and humira. I wanted you to know that I am not perfect, but I have come a long way. I could barely lift my head up or walk properly. My thinking was impaired and I had severe dizziness and headaches. I am so much better. I can function. I still have a lot of problems with my bowels, but I am a new person. There is hope!!!! You will get better. It is a long journey and I am still traveling through it., but at least I am finally reaching the top of that mountain.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Hey Gatorade Girl- Thanks so much for sharing your story. I gotta say, I can totally appreciate you username now knowing about your GI stuff.
I am glad to hear you are doing okay and feel more hopeful having read your message. The way the doc explained it to me was that the two things that make it hardest to treat Lyme are being undiagnosed for a long time and having been on steroids. Oy.
I was on prednisone, methotrexate, colchicine, plaquenil. Some other stuff i cant remember. Anyways, any advice on GI stuff? My tum is a disaster.. I have inflammation all throughout and I still have yet to find anything that really helps. How did you tolerate the antibios? I am taking VSL3 (3 pills a day) and florastor.
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Dear Renny,
I don't know if I have ever actually posted on any of your threads, but I wanted you to know that I am thrilled that you have found someone who is listening to you!!
Good luck with the new treatment. Never lose hope.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Thank you!! I hope he keeps listening.. sometimes I feel like they listen until you don't get better and then they don't want to be your doc anymore. It didn't seem that way with this doc so fingers crossed he can get me into remission one day.
Thanks for everyone's positive energy and messages. I really needed it and I am HOPING for the best.
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Hello. Ask your llmd if asacol is okay for the gi inflammation. I also am on iv antibiotics. I believe I just was not absorbing the abx. This is just my case and everyone is different. I still have major gut issues. I have gastroperisis and really can't eat. I'm on tpn (iv nutrition) 12 hours a day. I believe a gluten free diet will help you. You can google pecanbread. They have lots of ideas of things that are easy to digest. My neurological problems are so much better so hopefully everything will fall in line. My dr says that Bart causes all kinds of problems in the gut. I have had problems with strictures all my adult life and wonder if this was really Lyme. My original "crohns episode" involved a quick 25 pound weight loss, swollen joints, pain, and fluid in my knees that had to be drained. I could not even cut my food and had horrific spine pain. I used to call everything prednisone sick.....low sugar, sweats, beating heart, shakes, and bone pain. I really think this was just prednisone driving the disease further into my body. I hope you feel better soon. I'm on vsl#3 too and florstar. If you have inflammation in your gut chances are you are not absorbing vitamins especially b12.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
Wow, I am sorry to hear you need the IV nutrition.. is that permanent or will you one day be able to eat? DO you drink or is it fluid as well?
I did have a bad b12 deficiency and so I take a pill for it which seems to get absorbed because my blood work numbers have gone up.
I dont have crohns but random inflammation all over with "normal" biopsies. Very unsure what everything is. I have heard Bart can cause all this stuff as well- have you been treated for Bart?
I have also lost 25 lbs. I can eat but I am generally sick to my stomach everyday. Somedays are way worse than others and I have yet to determine what causes a "bad day"... any thoughts?
Posts: 341 | From NY/FL | Registered: Apr 2010
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posted
Finished up my 2 weeks of doryx and now doc wants to switch me to tetracycline 2x day. Any thoughts on this? I hate started new meds.. I get worried I am going to get very sick and end up in the hospital like I did with Invanz and tindamax.
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