For those that need a little bit of hope and sunshine - one of my old threads

Dr. thinks I'm crazy and still have one week left before LLMD. Things went down hill fast, muscle tremors and then complete loss of sleep cycle (1 hour a night) doc lectured me, but gave me doxycycline to go on again which overnight got rid of the muscle spasms. Still sleep cycle is affected but at least got 5 hrs last night. My mind started going comatose too and is still greatly affected.
My question....I'm going to up my doxy dose from 200 mg/day to 300 mg/day because I know it helped but part of what is hurting is my certain bart infection. I took keflex in october when bart symptoms started coming out. Pharmacy screwed up and gave me extra pills. I really feel like I have to take them. My urine/kidneys are clear as of testing this morning but they are starting to hurt from the bart....PLEASE HELP I also have Bactrim but I'm worried about herx..... WILL KEFLEX WORK FOR BART OR DO I NEED TO TAKE THE BACTRIM


PLEASE ADVISE.....I'm so scared.

Hi Opugirl,

I can't answer your question, but our thoughts and prayers are with you.

Don

I've also been told I was crazy, it's the "go to" answer for Drs. when they can't figure out what's wrong. Keflex won't do anything for Bart. Bactrim can be effective for Bart, but isn't usually the top choice/most effective. Rifampin and Levaquil (sp?) are most effective. Levaquil can cause tendon rupture though so some LLMDs stay away from it.

What about going ahead and starting on a natural treatment for Bart? Maybe others can chime in about that? I don't know a lot about the natural protocols.

I do know, I stopped Rifampin for 5 days and the severe foot pain and digestion problems started up again. Bart attacks the feet and digestive track a lot.

I'm sorry you're in the midst of this bad flare. I bet you are sooo excited to see the LLMD in a week!

Thanks everyone, yes Sam I believe my kidneys hurt from the bart. I didn't realize all my "issues" with UTI's - lingering pain, Interstital cys*** were signs of Bart. This started happening years ago and I had herxes with Bactrim which at the time I thought was killing me but as it turns out it was a true herx.

I am now confident that I have Bart.I have started getting the foot spasms also. I think this week before the LLMD will be the longest in my life.

That is interesting about the relationship between Bart and feet issues. I have had bouts of pain in my arches, feels like a dose of Rheum. arthritis. It comes and goes. One of the very first things, years ago, before I was diagnosed, I kept having big toe pain. It started with left foot and eventually moved to my right foot big toe. Maybe I should get checked for Bart or either that, start treatment for Bart for a little while and see what happens?

The thing is...I know that on keflex, my B12 went up and I had normal MHC levels and I'm not sure if doxy did the same thing so I'm wondering if I should be taking keflex to make sure I'm getting the nutrients. Even though I'm takig B12- I still can't sleep. I read that B12 def. can cause lack of melatonin.

Also on keflex, my skin healed very fast like super fast. I did not notice this with doxycycline

Post Edited (opugirl) : 1/22/2013 9:14:29 AM (GMT-7)

It sounds like Keflex is helpful for you then. As far as Lyme, it's proven to be ineffective, but maybe it helps w/ your Bartonella?

I'm sorry your symptoms are increasing so much right now. When do you see the LLMD? Make sure to tell your LLMD all of this about the Keflex. Give him/her as much info. as possible because it will help him figure out what treatment plan to start w/.

It sounds like you have dysautonomia which is caused by Lyme and causes an inability to sweat, problems w/ temp. regulation, POTS, etc. From everyone's stories that I have read, their autonomic nervous system does recover w/ Lyme treatment, so that's the good news!

Take a picture of it to show the LLMD! I think Bart causes a lot of my symptoms also. Like you, I get muscle spasms and twitching all over and have the jerking sensation when trying to fall asleep. Do you get severe muscle pain and stiffness, especially in the legs?

I have had many think that I'm crazy, doctors, family, friends, my own husband...

Now that I'm seeing an oncologist everyone has changed their tune and they realize something really is wrong. SAD ISN'T IT?? Ugh!!

So for those of you with Bart/Kidney symptoms, can you take NSAID's? I get extreme diarrhea and stabbing stomach pains with Meloxicam (Mobic) and Aleve. When I take Ibruprofen I am covered in bruises. Now I'm wondering if there's a link here?? I also have issues with IC, urgency and pain, etc. I've also had foot problems before, at one point my left foot swelled and I couldn't walk or bear weight on it. That was a few years ago. A couple yrs before that, my right foot was doing the same thing. I was told I needed to wear a boot but didn't have ins. X-rays are always negative. Just like when I go in for chest pain and congestion, my lungs always sound clear to the docs. And just like so many other symptoms that can't be confirmed thru tests. Why does this disease INSIST on making us look crazy??? It's horrible!!!

opugirl- I'm SO sorry you're going through this. It's so unfair. I'm still waiting for my first LLMD appt. I still have 2 weeks to go. It's torture.


Mystery, I get the stiffness and pain, but for me the stiffness is worse in my neck. Today when I woke up I couldn't move my head until my pain med kicked in. But I do have extreme hip/thigh pain.

Opugirl I also jerk and wake myself up. Last night was bad. sometimes I feel like I'm about to go into a seizure, and I've even wondered if I am having some type of seizure in my sleep, don't know if it's even possible, lol
Are you feeling any better today?

opugirl,
I can assure that sleeping issues are very common. Sleeping for me is a complete disaster, there are nights that I don't get 1 minute of sleep, that is very distressing when you have to go to work the next day. Like you, I find myself worrying about it before nightime even rolls around. I know I shouldn't be stressing about it before I even try to sleep, but it just happens. Every now and again, 1 or 2 times a month, I actually have a night where I sleep pretty good and get 7 or 8 hours, that makes a huge difference on how I feel the next day. If I could only sleep good every night.

Thanks for posting this. We need to hear positive news from those who have made a good recovery.