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Posted 8/29/2014 3:49 AM (GMT 0)
Dr will put in IV on Wed… a little nervous—I have very bad veins. Also nervous to start the abx—been on herbals for 3 mos. with almost no herxing and it was suggested that meant the infection load was pretty high. Last time I took abx (2013 I had about 8-9 different rounds of various abx for sinusitis & bronchitis and reactions were so bad… the reaction symptoms themselves from the abx actually helped me get dx w/ lyme, bart & bags. So… really nervous what it's going to do to be on high doses. Not sure what's on the menu yet.

Also, should I start contacting insurance company about coverage after 30 days? LLMD felt they would likely cover without incident for first 30 days since I was CDC positive and then some for the borellia. But beyond that… I'm worried about being in the position to start fighting for more treatment at the same time the treatment is knocking the wind out of me (I don't really have an advocate—live alone).

Anyway, just looking for suggestions/thoughts/feedback/warnings from you veterans of the IV abx…!

thx

-p
Posted 8/29/2014 4:42 AM (GMT 0)
I also have an appointment on Wednesday to put a PICC line in! I'm also nervous, I am currently on doxy but have had no improvement with it. I had some bad anxiety and twitches today, I'm hoping and praying the PICC line will be my miracle.
Posted 8/29/2014 4:44 AM (GMT 0)
After the first few weeks of herxing on IV's I started feeling better. I may not be the norm, but I always feel better after I get my Iv rocephin and clinamyicin. I am pulsing 3 days a week. As for insurance I don't ask (maybe stupid) but they've been paying for 6 months.
I'm having a good day so I can say, put your energy into healing and don't worry about fighting the ins co.
Best of luck!
Posted 8/29/2014 9:21 AM (GMT 0)
Picture of health, who is your insurance company?
Posted 8/29/2014 3:20 PM (GMT 0)
Thanks everyone…

Yes, Poh — who is your insurance??? that is great. You offer good advice—I should focus my energy on the treatment. Hard to do with so many expenses.

I've been watching informational videos on how to administer the drugs into the IV (in a home setting), keeping everything sterile and safe and I'm already overwhelmed. Good thing it's only a couple times a wk (I hope).

Does anyone have words of caution? Best ways to sleep? Does the PICC ever hurt or bother you?

-p
Posted 8/29/2014 3:44 PM (GMT 0)
Pirouette, are you getting Rocephin what dosage? I am actually getting a daily dosage of Rocephin. What symptoms do you have?
Posted 8/29/2014 5:02 PM (GMT 0)
P,

PICCs can become easily infected and quite dangerous if they aren't handled properly. I'm not trying to scare you because a lot of people with lyme get them and you'll be fine. But just be careful and make sure it's cleaned properly. If you start to feel deathly sick, get some help, it's not a herx.

My mom just passed from an infected PICC while getting chemo. She crashed from septic shock and couldn't recover, since her body was so weak from the cancer. But, sepsis is a massive cytokine storm and its really bad.
Posted 8/29/2014 6:03 PM (GMT 0)
cccmama3000-
I am not having a good day at all so won't try to type in all my crazy sx but in general, I have muscle/joint pain, cognitive issues, and exhaustion plaguing me now for the most part. I don't know yet what she's going to give me… a little worried because I won't have enough time to research anything since she's putting the IV in during the appt but bet it will likely be the typical cocktail.

Thanks Louise—I am so sorry about your mother passing. What a horrible thing to happen with everything she—and you were going through.

Those risks played a huge role in the decision to opt for the PICC. I have extreme digestion issues (that have mostly subsided) and I cannot get back into that cycle again. LLMD and I were worried taking oral abx would exacerbate that situation. I don't have it in me to go through that again along with everything else. So, just going to take the chance. I'm a bit of a germaphobe to begin with so I am used to hyper cleaning, etc. Hopefully that will finally come in handy and help make sure there is no infection. I'll need to keep lots of alcohol swabs on hand.

I know some people have nurses come and administer—maybe that is an option for my bad days.

-p
Posted 8/29/2014 6:14 PM (GMT 0)
I hope that it all goes well, Pirouette!! It is a lot to deal with, but know that many do and I know that you will get the support you need from the members here that have gone through this. My new doc wanted me to do IV also, but I refused because I have had good results with my herbal protocols, so I believe they will work well for me again.

I just wanted to clear up something too. Herbals will work no matter how high your bacterial loads are, if you are on the right ones at the right dose - just like abx. I went 40+ years without treatment and I healed well the first time and expect nothing less this time.

Whether to use herbals or abx is a very personal decision as far as I'm concerned with a number of issues that have to be taken into account.

I hope that you heal well and have very few -if any- complications. Please be sure to let us know how you are doing as you go through this!
Posted 8/29/2014 6:23 PM (GMT 0)
Hey Pirouette, its been a couple years since I had the picc line in but gosh I remember the idea of that thing had me freakin! Dont though...its really not that bad. I only had mine in for 30 days but some people have much longer and many have said their "picc became a part of them" and they didnt even know it was there.

Im a germ-a-phobe too! The 1st in home nurse I had told me to remember the acronym S.A.S.H. (Saline, abx, saline, heparin). This is how I remembered the order to use and flush. I went crazy with using ALOT of alcohol pads to wipe the lumens (sp?)

Also, the shower is tricky. They will give you a plastic sleeve things with elastic on both ends but I preferred to take plastic wrap and wrap around real good. Then I would seal with rubber bands(not too tight to cut off circulation or anything) and tape one each end of plastic wrap and then put the shower sleeve thingy on over top of all that. Its important to not get it wet!

As long as you take the precautions with proper flushing, cleaning, and not getting wet...it should be fine.

Dont get yourself all worked up in your head about it. Its something you need to do to get better so just essentially roll with it and lets the strong meds kill the darn buggers ya know. Some people cant even take advantage of iv meds because of costs and ins....so at least your able to take advantage. I know you will keep your eyes open for anything extra alarming...but dont be looking for things, ya know.


Also, would like to mention...my mother got well off the picc with just rocephin! I think she had just lyme though.


Best of health & xx's
-Courtney
Posted 8/29/2014 6:45 PM (GMT 0)
I am envious, Pirouette!! I don't think there's any way of getting IV antibiotics here in Canada. My Dr. isn't that aggressive...and I'm lucky she's even accepted my Lyme diagnosis.

My husband had a bad arm infection - either staph or strep...and his arm was growing by the hour...the ER dept. released him with oral meds.

Next day, went to the Dr. as his arm was huge, infection spreading...and that Dr. called the ER and argued with the ER nurse to administer the IV to my husband - once a day for five days. He told my hubby not to mess around...it could kill him.
IV antibiotics worked like a charm...his arm improved quickly after the first IV.
I think IV antibiotics is a good decision if you've had lyme disease for a long time.
Posted 8/30/2014 6:45 AM (GMT 0)
Thanks again everyone—
Good stuff.

Traveler—OK, thanks. I think it was a statement you made, in fact, that maybe I misunderstood. Is it possible to take too much and not get a reaction? I've been taking 1 dropper 2x/day of AL-Complex for 3 mos., A-Bab and A-Bart for over a month now and have had no significant reaction so thought maybe herbs weren't working. I was heartbroken because it's cheaper and better and I felt I would not live to see another day if I had to take oral abx and suffer exacerbation of the GI issues I was suffering.

I think LLMD also wanted to start abx because I've gone untreated for maybe 15 yrs or more—her preference for the chronic late stage. I'm not wild at all about abx but I'm anxious to get something going. And given my reaction to abx last year (didn't know I had lyme then and was prescribed 8-9 rounds of abx over about 12 mos for sinusitis & bronchitis), which were so significant they actually led me to seek out an LLMD, so we thought they would be more effective but we'll see.

We know that the 30 days of lyme tx will be covered but not beyond that. Likely not. And I have to undergo more testing for Bart & Babs to get tx covered.

Girlie—
I ran across a website that sells the lyme IVs. I will try to find it again and post it! Your hubby got so lucky—that sounds like an incredibly dangerous close call. Glad it all worked out.

Orchid_rain—
I will make note of everything, thanks. I am very very worried about my lymebrain. It is getting really bad lately. Just doing crazy stupid stuff, not remembering my meds or schedule and disconnected with everything. So I'm worried I will screw it up somehow and not sure what to do about that. I live alone and so I don't have help. I'm wondering if there is an affordable service that can jump start this whole thing until I start getting better and less absent-minded.

Thanks for the advice from all—I am getting more and more comfortable with the idea!

-p
Posted 8/30/2014 1:07 PM (GMT 0)
Pirouette, we seem to have very similar situations. I was also undiagnosed and untreated for a number of years, 12 to be exact. I also have Babesia. Along with that I have both MTHFR mutations, I'm a compound heterozygous. Have you been detoxing? I know that people like us with MTHFR have issues with detoxing. Love to hear what you are doing for that.
Posted 8/31/2014 3:32 PM (GMT 0)
Wow—we do have common circumstances! Yes, I have been detoxing and I think I am doing better. This is my regimen—let me know if you have any q's or are unfamiliar with anything (I'm skipping over a lot of detail but can describe specific things if you like):

- drink bentonite clay twice/day;
- get in some roughage like psyllium husk, chia seed or quinoa;
- twice per day I take 15 drops ea of bur bur and parsley tinctures to support the detox and then I also take 15 drops ea of pinella for brain support, and milk thistle seed and burdock root to support liver/kidneys as they flush out toxins;
- LLMD and ND prescribed epsom salt+hydrogen peroxide+borax baths but for now, I'm just soaking my feet in that solution before bedtime a couple times a week;
- LLMD and ND also prescribed coffee enemas but haven't started those either—will be more inclined to do so once I start the IV.
- I do oil pulling every other night before bed alternating between sesame seed oil and virgin coconut oil;
- and I try to ride my bike at least once per day and work up a good sweat. I don't know if this is weird or common—but I am having trouble walking—it's like my leg muscles/tendons/bones aren't communicating and my walking is painful and uncoordinated. But I can ride my bike so that's what I'm trying to do.

I've also been taking a lot of methyl support—are you? I have found that it's helped quite a bit too.

Hope this helps!

-p

Post Edited (Pirouette) : 8/31/2014 4:36:32 PM (GMT-6)

Posted 8/31/2014 10:40 PM (GMT 0)
Thanks MM—

I will definitely post my progress. I think there are quite a few posters here who have also had or know someone who has had abx by IV and I think they will be a good source of info.

-p
Posted 9/2/2014 5:53 PM (GMT 0)
Piroutte,

I really need to increase my detoxing. I want to start tinctures but not sure which ones, there are so many out there. You say you do 15 drops, do you do them directly on the tongue? or in water? Can there be any reaction taking that in addition with IV drugs or ABX in general?

Whats the oil pulling for?

Right now I do cupping (with my acupuncturist), warm water with lemon first thing in the morning, detox baths and saunas (but I am going to have to stop those when I get my IV tomorrow) and exercise when I have time.

I only take Methyl b12 - which other methyl vitamins are you taking? I was taking a B-complex but stopped after I found out I had MTHFR because the supplement had folic acid. Which is a no-non for those that carry the MTHFR gene.

One more thing - did your doc prescribe taking Flagyl in addition to the IV ABX?
Posted 9/2/2014 6:01 PM (GMT 0)
pirouette - meant to say "is your doc prescribing Actigall in addition to the IV ABX?"
Posted 9/2/2014 6:20 PM (GMT 0)
Good note w/the Actigall cccmama :-)

I had thought about that (mentioning protecting gallbladder) after my post in this thread to Piroette. I didnt not personally take to prevent gallstones because I only had picc 30 days but def wouldve been more inclined to getting a prescription from my doctor if I had the picc any longer than that.


~Courtney~
Posted 9/2/2014 7:17 PM (GMT 0)
cccmama3000—

I take the tinctures together (BurBur/Parsley/Pinella/Milk thistle seed/Burdock root) in 1/4 cup of water. You can dilute it more but I prefer to throw it back like a shot—the taste sometimes tips me into nausea but I understand most people tolerate it really well. Then I kind of hold my breath a bit and it helps not to taste it as much.

Can there be any reaction taking that in addition with IV drugs or ABX in general? That is a good question and I vaguely remember my LLMD mentioning no issues because I plan to continue taking them after starting my PICC tomorrow--but maybe someone else can chime in on that.

Whats the oil pulling for? I LOVE IT but I don't do it as much as I should. Theoretically, swishing the oil around in your mouth helps clear out bacteria—the oil gets into all the crevices between and around your teeth, under your gums, all over your tongue and throughout your mouth and then you spit all that toxic stuff out. I add tea tree oil as well, which acts like an antiseptic and I like the taste. Afterward, my teeth feel cleaner than after a professional cleaning. Some say it helps remove staining, too—but I haven't seen that personally (yet).

Right now I do cupping (with my acupuncturist), warm water with lemon first thing in the morning, detox baths and saunas (but I am going to have to stop those when I get my IV tomorrow) and exercise when I have time. I am not familiar with the cupping. I think you bring up a good point—what do people w/ IVs do in place of saunas? I will need to ask my LLMD tomorrow.

I only take Methyl b12 - which other methyl vitamins are you taking? Correct, if you take the B's or folate, it needs to be in the methyl form. I am currently taking Methyl B12 Plus, 1400mcg 1x/day and Seeking Health Active B12/5-MTHF 1 lozenge daily, 5000IU Vitamin D (which most people don't realize is a hormone). I've read that many people w/ methylization issues are commonly low in Vit. D.

did your doc prescribe taking Flagyl in addition to the IV ABX? I don't yet know what she's going to prescribe—at previous appt. she mentioned she might only do meds for lyme right now because it's the only CDC positive test I have and we anticipate issues w/ ins. co. for Babesia or Bart treatment. But she was going to think about it.

And thanks to you and orchid_rain for the Actigall suggestion—I have been reading about associated gallbladder issues as well so I will definitely bring that up tomorrow.

-p

Post Edited (Pirouette) : 9/2/2014 1:21:00 PM (GMT-6)

Posted 9/2/2014 7:47 PM (GMT 0)
Piroutte, would you mind if emailed you directly? I have more questions...
Posted 9/4/2014 4:22 AM (GMT 0)
Not at all—my email is in my profile. I don't check it every day so please give me a day or two to respond.

UPDATE:
LLMD decided that since I forgot to get labs done (thank you mushy good-for-nothing lymebrain) and since I requested nurse support, which takes about a week to set up, she's sending me to hospital to have PICC or Port put in (not sure which yet) next week. She's going to start me off on Rocephin and Mepron or Malarone for Babs.

I am SO relieved. I was really not ready physically or psychologically to do this today. Am fearing that I might not be mobile after pumping a bunch of meds in and have quite a few things I want to get done before we start the IV. Plus, I am terrified of GI issues coming back and I need to buck up and do this so an extra week will help me face the music with a little more courage. Plus, I was so nervous I forgot to ask the questions on my list I was holding in my hands.

-p
Posted 9/4/2014 4:30 AM (GMT 0)
I had two picc lines after a bad dog bite. It isn't so bad. The vein they're after is huge. They used ultrasound to find it.

I worked full time with mine. Sometimes I'd catch the tubing on something, and OUCH! That hurt. I'd be working while running vancomycin. It it hadn't been sutured in I'm sure I would've pulled it out. It came in a pressurized ball that I'd put in my pocket. But overall, it was easy to deal with.

If I could afford it, I'd push for one now.
Posted 9/4/2014 4:41 AM (GMT 0)
AWESOME that you worked out—thanks for sharing that. I've been worried about it hurting just by moving around and if I don't get to ride my bike I will go insane. I am right on the edge already. I am doing OK with the mechanisms of a PICC or Port—what I am really anxious about is how I'm going to respond to the meds. I have a friend who is now wheelchair bound after starting abx so I have that in the back of my mind—plus I had GI problems that I just cannot go through again and I'm worried that the mepron is going to bring them back. But it is what it is. Gotta take this next step.

BTW—our IgM band results are quite similar. I think I also had a 23 in there but the rest are the same…

-p
Posted 9/4/2014 10:25 AM (GMT 0)
I had 23 on Labcorp's test. It was my only positive band. I'm not sure where it went with Igenex.

I'm almost positive I had Lyme back then. I was on unasyn, vancomycin, and invanz. I never had any side effects. All of those should have hit Lyme to some degree.
Posted 9/4/2014 6:16 PM (GMT 0)
Hi Piroutte
I just had the PICC put in last week at the hospital. Piece of cake! The home health nurse came to my home later in the day to set me up and teach me how to infuse. I unfortunately have the drip bag and not the ball, but heck, insurance is paying the first 30'days and I didn't test CDC positive so beggers can't be choosy!

As far as showering, I find if I first put on the sock covering, then wrap in plastic wrap it's fine. Saran makes a "ClingPlus" that clings really well. Nothing else needed! As far as the "sock covering", get a few pairs of men's white crew socks and cut off the foot part. Works really well to keep it covered - better than what the nurse gives you.
I read a very good post written a few years back about paying for IV meds on your own, and as I will have to go that route, I started doing some research. I have had lyme, like you, many years so I know it's going to be a long road back. My symptoms are similar to yours with major cognitive issues. Talk about mushy Lyme brain! Since starting the rocephin last week, I am incredibly forgetful, more than usual if possible! Example: I put together batter for oatmeal cookies for my husband. I tasted the batter as always and thought it wasn't as tasty as last time. So, I put the batter in the refrigerator and started doing the dishes and low and behold, there was the small bowl with the flour, salt and baking powder mixed together, waiting to be added to the batter. Grrrr ...
Anyway, I would like to know more about your detoxing - mind if I email you? I am using what someone on the forum suggested but it sounds like I need a lot more...
Thanks!!!
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