I'm losing faith in my LLMD and fast. Let me explain. I've been on antibiotics since April 2015 and a lot of them! Currently taking for Bebesia, Bart, and Lyme
Doxy............ daily Rifampin........ daily Cefuroxime......daily clarithromycin.. daily Atovaquone....... 2xdaily tinidazole...... daily Just started Artemmisinin.... daily.
Supplements: B12 Magnesium Milk Thistle Vitamin D Multi Vitamin
I started April of 2015 Doxy/Rifampin/Cefuroxime. I then moved slowly to the others. I had bad neuro symptoms that have mostly have gone away during treatment. Then Around December I've been turning in the wrong direction with reoccurring symptoms of;
bad night sweats again, burning toes/now numb, and my neuro symptoms are coming back more now(anxiety head pressure) now monthly. I also have RED EYES a lot!
I just had a LLMD appointment to point all of this out and they seemed confused on treatment and where to go. I told her that it seems we should have been doing Artmmesinin a while ago. She said ok lets add it. She wanted me to add it in every day. I told her in my research its not supposed to be because an enzyme can develop after 14 days and become useless. She said she has never heard this before. I also told her I was worried about the burning/numbness in my toes being from neuropathy from the Tinidazole because she just blew it off and didn't mention it.
We then were going to try another protocol for Bebesia. She gave me three options and told me to research them. I then had a hard time looking them up because the spellings were wrong. This was the case for Bartonella as well.
Long story short I asked her for some clarity. I also asked her what is new or trending in terms of protocols or what they are learning over the last couple years. Sarapeptase was all they could tell me.
It seems I do more research than her on certain things. She wanted to add Bactrim DS for Bart. I said I've heard of it for Bebesia but not Bart and she stated she has never heard of people using if for Bebesia!!! I'm just losing confidence in her really fast!!
We left the appointment upping my Atovaquone to 2 teaspoons daily and adding Artemisinin both because of my research on what to do not her recommendation. Also switching from Tinidazole to Metrondazole because I was scared my buring toes and numbness was a sign of neuropathy. Again my research not her's.
It also seem like 600 mlg daily of rifampin is low and we should have upped it at some point because of resistance being developed. She didn't think that was appropriate at this time.
I made some VAST improvements and went from almost being on disability to being a supervisor of to offices and working a high intensity job. I'm headed in the wrong direction fast. It seems like I'm doing alot of the work here and she is trusting me to make calls on meds.
Im looking for some direction and confidence from a LLMD. I've made such vast improvements and I think if I had a plan in place with some quick med switches that made sense I could get on the road to remission. I feel like I'm on my own here.
I need some direction!!!!
**dosages edited per LN rules**
[ 03-13-2016, 06:30 PM: Message edited by: Lymetoo ]
Posted by lostlyme (Member # 38561) on :
Sorry to hear, for myself has been 2 steps forward 10 steps back. Look into anything you are taking is reducing or canceling out a medication.
Also try your best to keep track of symptoms and medications you are taking. So its a medical diary.
With being sick with multiple TBD, it becomes a juggling act. As to which one to attack first, or back off on another.
Posted by Lymetoo (Member # 743) on :
I honestly cannot imagine how you could get well on that many meds all at once. My body would crash.
Do some research on the SIDE EFFECTS of tinidazole. Nerve pain is included in that list. You don't want those symptoms to become permanent.
Posted by Lymetoo (Member # 743) on :
I forgot .. I'll have to edit the amounts of each drug in your list .. per Lymenet rules. If anyone wants the dosages, please PM "goose."
Posted by Jordana (Member # 45305) on :
Bactrim works really well on Bart. That's in the literature. It's one of the ones that have been found to have some direct in vivo activity on Bart and there aren't that many of them.
From what I've read, dealing with multiple co-infections means treating what's "on top." Red eyes is not a symptom of Babesia, it's a symptom of Bart. So are head things and foot issues so it could be that what she's deduced from your symptom list is that Lyme is pacified but Bart is emerging.
If you're handling Lyme and it's being suppressed honestly that would have been my guess too.
What I would be thinking is that treating Babesia has to be a continuous, unbroken, very intense treatment. If it doesn't work and the symptoms continue then the next one on the list is Bart anyway.
Posted by Edessajarrue (Member # 35310) on :
You need to listen to your gut feeling about this (and any other) doctor you have on your payroll.
Doing your own research and having a basic understanding of lyme & coinfections and even looking up drug interactions, ectera is prudent on your part. Bringing to the docs attention of current info you have come across should be at least acknowledge in some way as well..
all that being said... you are NOT responsible for doing the work of research for your practioner. They need to know what,where and why of each drug they are giving you. This is not an exact science and sometimes they need to swing and hope they get a hit. However i also believe that swinging and not knowing what the heck the timing of the swing should be and what they are aiming for ad what the consequences of hitting or missing could be is stupid and irresponsible on their part.
This doc needs a document research assistant or two. Sending your patients out to do this work for them is going to be hit or miss and info is gonna come in pieces that make absolutely no sense in the big lyme puzzle tx arena. This can become a dangerous very quickly.
Imho only, 1 yr on the rx protocol, taken every day, your body is probably in a toxic crisis spiral. Your doc has managed to chemo every good bacteria out of your intestines. Your immune system is probably on a semi permanent vacation.
I know that lyme and babs both have so replication cycles. (Babs replicates approximately every 30 days?) I've also know that antibiotics are most effective in killing during replication.
Bombing your body with constant antibiotics is just gonna end up poisoning you more I get extremely symptomatic around my menses, so i try to time my weeks on during that period in the assumption that the bugs are in a replication cycle
The body needs time to rest, time to detox. I have read that antibiotics train your immune system to not be needed, so basically it takes a vacation. Too long of a vacation and it may not want to come back.
We need to stay diligent, work with our doctors, be a team, share our knowledge and learnings. However, i do not believe it should be the patient that gives the seminar to the doctor who has trained in that specialty.
i do not go to a brain surgeon to be told to research the techniques needed for them to do surgery on my brain tumor. Though i may show him a paper i found on a technique being used elsewhere and ask about their knowledge/expertise and if this technique as been considered and if why/why not it is a good idea or alternative.
Does that make sense?
-ede
Posted by goose (Member # 45410) on :
Thanks so much for the replies!!!! One thing that would be nice if anyone could help. People on here seem to be very in tune to what is used an what symptoms are and meds that could work better or worth trying.
My symptoms are mostly right now:
-Night sweats often like every two weeks that last for a week! -Pressure in front of my head. -RED EYES!!! This is getting worse and I look like the devil. -Burning in toes is getting better now that I switched to Flagl and got off tinidazole.
I just need some guidance on what to try or consider.
Posted by Lymetoo (Member # 743) on :
Flagyl and tini are basically the same. So BE CAREFUL.
Maybe you need to see your eye doctor for the red eyes?
Posted by Judie (Member # 38323) on :
Gosh, it sounds similar to what I went through. I knew more than the LLMD by the end.
I finally had to quit because the LLMD was asking ME advice.
I'm sorry you're going through this. It's taking me awhile to undo the damage from the medications I was put on.
Good for you stopping the tinidazole. Avoid the fluoroquinolones (you probably know that).
Posted by Judie (Member # 38323) on :
Atovaquone causes red eyes.
Posted by Edessajarrue (Member # 35310) on :
gabapentin may help with your painful toes.
Posted by SacredHeart (Member # 44733) on :
Did you ever get checked for mold? Get the twin labs urine test for mold ordered as a first step.
Posted by goose (Member # 45410) on :
Does anyone have a chart or somewhere to refer to that lists each infection and mediation used to treat it??? That would be helpful. This could get me in the right direction in to making some new recommendations in switching my meds up with my doc.
It just seems to me there are combos out there that some meds work for two thus you have to take less pills. Also it would be nice to do some research on different protocals for each so I'm more prepared when I go back to meet with her.
Posted by TF (Member # 14183) on :