Wow, welcome and I hope we can at least be of some support. I am myself feeling crappy today, so I have to make this short, but will watch your posts. In a nutshell, you need to get to an LLMD if possible. I know your doc understands, but is he an LLMD?
You have other medical issues that may be worsened or just in addition to Lyme. If you can't keep weight on, that is a serious prob. I couldn't keep weight on when i was having anxiety and panic attacks - I also couldn't sleep and hated to eat.
My lips stay chapped and I still struggle with insomnia. But, I cannot stand a hot bath, so that is where we are different. I take Doxy and I don't really think it's doing anything. I'm going back to my LLMD in Dec., so he will be putting me on more abx.
A person in my support group described constant feelings of passing out, but she didn't. Not unusual. The heart pounding, insomnia, chest tightness,e tc sure smacks of anxiety, which is a byproduct of Lyme as well. Get yourself seen by a shrink if possible, a must have for a Lymie in my opinion. I am really tired right now, so forgive me if I don't make sense. You take care and I will try to keep in touch. The people on this forum are very supportive and kind, so you are in the right place.
Hi, to find an LLMD go to lyment dot org and look in the "seeking a dr" forum. God bless you.
lyme spirochetes - bacteria - seem to like soft tissue - collagen, etc; - you really do need to find an 'LLMD' - in my opinion [not qualified - other than having lyme] - you need to start antibiotics - Doxycycline can be 'harsh' on our systems - there are alternative abx. but it seems - if you can tolerate doxy. - it helps a lot of lymies.
If I were you I would do my best to find an LLMD. and also try talking to my doctor about atleast getting started on some abx.
maybe the hot baths helps your anxiety - being more relaxed will loosen things up and get the blood circulating more efficiently - all through my own lyme -I have found the more I can relax the less intense my symptoms are - it is easier said than done to relax when there is a lot of stress/worries in your life. I have been amazed at times - how much better I have felt - pain wise - just through working on relaxation - the hot bath is a good place to start - deep breathing and mind clearing is good too. If you can 'persuade' someone to give you a 'gentle' massage after a bath - you may find that helps too - try using massage oil containing - rosemary, eucalyptus and lavender - I buy one ready mixed - it is for muscle & joints - it would be worth you trying to find something similar.
I know the baths and massage isn't the answer but it can give some immediate relief.
Anxiety is a part of lyme - when we are anxious we are tense - stressed - so the body can not function as it should which obviously affects our different body systems - immune system included.
Best wishes - keep us posted
Hi, apologies for previous post concerning abx. when I first read your post I presumed your meds. were for anxiety and pain.
There are so many different names/drugs - I am in U.K. and I guess there are alternative names for the same stuff here!
Best Wishes - Gorbs.xx
I am sorry that you are going through so much pain with your illness for so long.
Please don't give up and continue to seek a doctor who can help you. Your symptoms could all be from Lyme and co-infections, and if that is your root cause, keep in mind that people come back from horrible situations and return to normal lives. Even if you have other conditions complicating the picture, it certainly sounds like you are undertreated at this time.
Also, though it's difficult to endure or understand, people who've had Lyme for a long time before treatment often get more sick on antibiotics before they get better. This is do to Herxheimer reactions. Basically, one the antibiotics start killing the bacteria, the die off in your system makes you sick. It sounds crazy, but I've gone through this during my 11 months of treatment. With time, the Herx's become less severe and last for less time, but it can be a real struggle to get through.
Keep us posted, even if just to vent. This disease can be lonely and maddening, but we're here to help as much as we can with that.
I just googled "LLMD Binghamton NY" which looks on the map like it is close to you.
Several items popped up that may help you find an LLMD if you still are looking for one -- the 'hits' I got in google lead to specific Lyme-oriented websites that often have messages or posts or a private message board where you can get leads to an LLMD in your area.
You can find support groups the same way, but finding an LLMD is the first thing to do.