Should I ask for a PICC?

A beer enema sounds like a jam!

Ah, I'm bias, but my friend who wasn't responding to her Abx didn't respond to her IV ABx either. She got blood clots, had to have her PICC line removed 3 times, and put herself in a situation where she has built up a mega tolerance to antibiotics.

Personally, when I was on antibiotics I felt worse. Now that I've done genetic testing, it makes sense - my body doesn't methylate properly, so antibiotics were inhibiting my enzymes, getting "stuck" in my liver and essentially adding to my toxic load.

I would put it on the back burner and exercise some other options first. Investigate. Their are tons of other factors that may be halting your progress. If you are eating any foods you are mildly intolerant too, for example, that will keep your cytokines high and your body will remain in an autoimmune state.

Antibiotics are here to help us lessen the load. They MAY NOT be able to ever cure us. Lyme is smart, and chronic lyme is buried deep in the crevices of our bodies (shiet). Even if you do opt for a PICC line, build up your immune system first.

Best of luck.

Levaquin can have permanent and scary side effects, so I would be careful with that one!

I would definitely inquire - I mentioned this to you before, but I am not sure of the "requirements" to get a PiCC, meaning, I don't know what guidelines Drs follow in order to decide if it is necessary or not

what about asking about injectable penicillin? I think that was next in line for me if I didn't improve, but I was luck that I did. if I recall correctly, my LLMD did one abx, then two abx, then 3 abx, then Injectable penicillin, then IV - I think that is her order of things on the plate.......

IVIG is also another option, I haven't seen anyone mention it on here except for one member. it costs a fortune, but if you are a candidate, your insurance could pay for it.

Good idea. Maybe I will ask to try injectable first!

I did a 30 day picc line in Sept. with rocephin and for the first time in 6 months I actually thought I was cured. I felt good for a few weeks and was med free and then all symptoms came back. I was put on oral cephine for 30 days-no results. I was denied another picc line in January. I am not on any meds currently. I started having severe panic attacks and uncontrollable crying for weeks. Every day I have a headache, dizziness, wooziness, brainfog, chills, sweats, insomnia yet extreme fatigue and nauseousness. That's a normal day. I would have done another picc line if approved. All NIH studies show there are no benefits
to having a second one if the first one didn't work but the studies are from 2008. I am sure the studies are biased as they are usually funded by government money and it costs insurance companies a lot of money....

itsnotjustlyme.com said...
A beer enema sounds like a jam!

Ah, I'm bias, but my friend who wasn't responding to her Abx didn't respond to her IV ABx either. She got blood clots, had to have her PICC line removed 3 times, and put herself in a situation where she has built up a mega tolerance to antibiotics.

Personally, when I was on antibiotics I felt worse. Now that I've done genetic testing, it makes sense - my body doesn't methylate properly, so antibiotics were inhibiting my enzymes, getting "stuck" in my liver and essentially adding to my toxic load.

I would put it on the back burner and exercise some other options first. Investigate. Their are tons of other factors that may be halting your progress. If you are eating any foods you are mildly intolerant too, for example, that will keep your cytokines high and your body will remain in an autoimmune state.

Antibiotics are here to help us lessen the load. They MAY NOT be able to ever cure us. Lyme is smart, and chronic lyme is buried deep in the crevices of our bodies (shiet). Even if you do opt for a PICC line, build up your immune system first.

Best of luck.

the problems with PICC they carry a high risk of clots and infections, because it provides a tunnel for bacteria to enter the body from the outside.

Yes I should have noted my insurance wouldn't pay for a PICC that was why it would be so expensive for me. I am doing the oral antibiotics route still.

@Simela I have read and my LLMD mentioned Lyme is very slow growing. Around 30 day period. Bartonella is 12-14 day. Babesia can cause issues in 6-8 hour period not daily until it is under control. Of course everyone is slightly different.

Seeing as Bart has been noted to cause seizures sometimes it wouldn't surprise me about your son.

I am not a DR but based on your other posts I think you should go see a LLMD not a regular doctor if you feel it is Lyme or Bartonella.

Utahgal, before you get a PICC I would just ask about bart and babesia some more. Just because you didn't test positive certainly doesn't mean you don't have them.

Your doctor should be able to clinically diagnose you by your symptoms. Or maybe trial of a babs or bart medicine and see how you react.

I posted details of bart and babesia in your other thread, Utah.

Post Edited (sarahm620) : 2/5/2015 9:48:45 AM (GMT-7)

sweetpeaisme said...
I'm new to this forum-1st post was Feb 4th...why are the posts for that date gone? And today, the 9th is 1st I've logged back in to check to replies but there are NONE! at f?

a new post will only show up as the first log, if someone replys without qouting the last message, its kinda wierd.

I'm certainly not an expert but I have also wondered when IV abx is the way to go. My doctor thinks it takes a good year or more on abx to see results. I've done modifications to my abx since diagnosis 7 months ago, but only been on heavy dose abx for 3 months.

Part of me wonders if IV is what I need to get better. But I'm also not emotionally ready for that.

I did order 23 and me and I'm curious what I will find out. Also, I am getting adrenal testing done since I suspect that may be an issue too

Uch...Sounds like this has been very tough for you.

Tough question, to PICC or not to PICC. My question, if abx didn't help you the first time, would getting them IV create different results? I'm some got absorbed.

Before rushing to have a PICC inserted, I would really research other infections, and determine why abx didn't work, so you can know how to properly proceed (without further screwing yourself). Did the spirochetes learn how to survive from abx? Did they need to be rotated? Pulsed? Did you get better at all on abx, and then the same? (if so, maybe they needed to be pulsed and rotated). or did u get gradually worse? (for me gradually worse on abx was a big red flag that something opportunistic was going on). Was fungal addressed at the same time? (According to my old doc, fungus supports lyme...so I think that partially explains why some people get only somewhat better on abx). Was fungal support enough? Good you requested what you need, even though the Dr. disregarded it. I would just search for the right Dr. who knows about this if she doesn't know. I just think, if you rush for a PICC without deeply exploring this, you may not see any changes if bacteria is not your primary problem (or possibly become even worse from opportunistic infections).

Personally, I felt better once off abx., and I hope you start feeling well too. ( i have a long way to go, trust me). Now that your off everything, don't you want to know what your baseline is? Is the sweats/fever your immune system naturally fighting something here? Or is something getting worse? how long were you off abx for, and when did this all start?

I say think it through. You know your actions, and your body's does next. Analyze it, look for patterns, read into it. For me, tuning into my body, and figuring things out by watching my actions and reactions allowed me to properly advocate for myself. Without this, I think its really all one guessing game (I get the vibes, it's even a guessing game for some docs too, as they collect $500/visit). It's so frustrating.

My doc. said lyme is the smallest of my problems right now. Fungal, parasites, metal, and detoxing are what I'm focusing on primarily. Yet, so many conventional docs don't know a thing about this! I really had to take things into my own hands...my only regrets are that I didn't do this sooner.
and...by the way, since your looking into parasites....my labs were always negative until I started treating with herbal antiparasitics (mimosa pudica)...my doc said it was ok...after 2 months my stool looked really funky, and only then did my Ova and parasite test come out positive. So, my point, it's not as simple as "i don't have it, labs are negative' You have to search for answers.

Good luck, I really hope you get well quickly, and make only the best choices along the way.
If you want more info. on anything, feel free to contact me.