posted
Hello to all my lyme friends and to the new members that I have not met yet.
On Valentines day my LLMD and I decided I could stop taking my abx and see what happens. I was having surgery and my pain meds killed my stomach so it didn't combine good with my other meds. I had been on abx for over a year and I was symptom free for almost 3 months.
Well, the good news is I felt great for awhile. The bad news is things are creeping back up again. Although some of my returning symptoms are minor some are coming back full force.
It started about 3 weeks ago with pretty bad anxiety/depression. I just woke up one morning feeling all freaked out and shakey. Then the afternoon fatigue came. Those two things are easing up. The depression and anxiety are pretty much gone. I knew that it was a bad sign though.
For the last 2 weeks this is what has been happening. Terrible insomnia, restless leg syndrome, heart palps (although not as bad as before) headaches, mood swings, hot flashes, night sweats, vision changes, heal pain and my favorite brain fog.
I called my LLMD 3 days ago and we went over everything. I have an appt. next Thursday. Here is my question. He told me he wanted me to think over some things for the next week. Such as, continue on orals or switch to IV. Try new orals or go back to the ones that were working before.
I don't know what to do. Those days of feeling normal were so wonderful. My doctor has me be a part of all decisions regarding which treatment we choose.
Does IV kill this faster? Would I be smart to switch and see what happens or just up my orals again? I don't really have any troubles taking the orals..only tetracycline. That makes me go crazy..literally.
Just a reminder for those who have forgotten me or don't know me yet...I have had lyme for 11 years this April. Mis dx'd as MS until just over a year ago. Igenex test are IND..Igenex Bartonella test is positive.
Sorry this is so long..I know how difficult it is for some to read long posts.
Any advice???? I know it has to be left up to me but I just don't know what to do this time.
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Have you been treated for co-infections??
That may be what is "causing" the relapse.
My LLMD has a remission protocol.
Obviously two months on antibx. being symptom free.
Then for the next two to three months on the first two days of the week
You are to take 750 mg of flagyl on Mond.
500-750 mg of biaxin on Tues.
If you get a herx reaction that week, then you know you are not in remission.
If you don't get a herx reaction you continue that protocol on the first two days for the next 8-12 weeks.
If you remain Symptom free during that time, you can be officially
Dx as being in remission.
I just talked about this with my LLMD on Wed of this past week.
New protocol for his office.
Glad he has it.
Sending you positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by kitkat32:
For the last 2 weeks this is what has been happening. Terrible insomnia, restless leg syndrome, heart palps (although not as bad as before) headaches, mood swings, hot flashes, night sweats, vision changes, heal pain and my favorite brain fog.
I called my LLMD GREAT!!!
Does IV kill this faster?
Any advice????
Thanks everybody...kit
1. First thing I would do is get on abx's again pronto! 2.Does IV kill this faster? It puts more abx in you faster it gets blood serum levels high fast but you need abx that penitrates the blood brain barrior well. Yes it can kill faster But orals will do the same once you reach the serum levels 2 or 3 days.Benifit of IV is no stomach problems at first.
3. restless leg syndrome are you or have you been taking any acetametaphen for the pain or say for a cold like niquill? Because I have restless leg syndrom when I have been on this for a week or so when I back off that particular med is when I get the RLS
I now take pecodan with asprin in it instead of percocet,vicodin,oxycotin,oxycodone which all contain acetametaphen.
Get back on abx's sorry this reared its head again.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
The abx weaning that you mention sounds like a great idea. I will talk to my LLMD about that at my appt. Having a taste of wellness and not taking any meds was pure heaven.
Tree,
I only take my Paxil..haven't had anything else. When I have a flare of my symptoms RLS is always included. The only thing that seems to help me is a wake more poor hubby up and have him rub my legs until I fall asleep. I try taking Lunesta for the insomnia..it worked the first night but then I took it last night and things went bad.
My little girl got out of bed and came downstairs for a glass of water. I got up to get it for her and I passed out. This use to happen to me before if I rose to quickly. My blood pressure just plumments. I think the sleeping aid made it worse.
My little girl is 4 and she ran up stairs and woke my 10 year old son. They were so scared. While I was laying on the floor my son called hubby at work and I guess my daughter was yelling at him to call 911.
I felt really bad for scaring them but hubby and I did have a good laugh later in the evening. My daughter said she wanted to call 911 but couldn't find the 6 on the phone. LOL.
I should also mention my relapse reared it's ugly head after myself and whole family had the flu. I guess the stress of another illness rained on my parade.
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