my appointment is next tuesday! iv or no iv...?

Did your doc say why he is recommending IV over orals or herbs?

I've likely had lyme untreated for 15+ years and many chronic cases are treated with abx, specifically via IV. They say more chronic cases go straight to IV treatment, but there are many posters here on this forum who have just as chronic cases but have been successful with herbs. I tried herbs for lyme, they were ineffective (but they were more effective for Bart and Bab, doc thinks). And I have severe GI problems, which the oral abx will surely exacerbate so we opted for the IV, which are injected via catheter installed in your neck that reaches straight into the main artery coming out of your heart.

I do not yet know how I feel about the port—have only had the IV for 10 days. But the port (a device installed under the flesh in your chest) is favored over a less permanent and reliable PICC (PICCS are known for being fussy and having a higher chance of infection). Doc says I could be in abx treatment for 12-18 mos., so that is another reason why we're doing the IV and why I got a port, not PICC. Google "Smart Port".

But this port is not what I thought it would be—it cannot handle daily puncture of a needle so I basically have the port under the skin but a huber eedle that gets changed out every week stuck into it and a short tube coming out of the needle, and I inject meds into the end of the tube. I was not expecting all the surface stuff. The needle and tube are partially taped down (the end is tucked into my bra) but yes, none of it can get wet and as you may have read in a couple of other recent threads, I do not know yet how that is going to work.

That said, doing the meds is a 4-step process but I know for me, it is 100% easier than taking orals and fighting the GI problems:
- I take the abx syringe out of the fridge 1 hr before injection;
- I swab everything with alcohol;
- I screw on a saline syringe into the end of the tube and empty 1/2 of it;
- I swab again and before each injection;
- I screw on the abx and empty it (1g Rocepthin) a little bit per minute (if injected faster, I end up tasting it, my eyes get really itchy and watery and it makes me a little light-headed);
- and follow up with another saline syringe;
- and the last syringe is Heparin (blood thinner).

My insurance approved Home Health Care to come and switch out the needle and take blood for labs, look me over with a mini check up, etc once a week. They also came to the house right after the procedure to check on me and administer the first dose and teach me how to do it. So far, I am fairly satisfied with the nurse care.

-p

My GI issues have been going on for 7+ years maybe longer. They tried to diagnose all sorts of things, Chron's, SIBO, gastritis, I forget all of them. The sx are so similar but not exactly so it's been a wild goose chase.
- My main sx in the beginning was pain after eating, crazy bloating and pressure;
- ND ran food allergy tests and just about everything showed really high antibodies, indicating leaky gut (something everyone w/ food allergies should familiarize themselves with—lots of info online);
- I started with HCl to trigger the pancreas to produce bile, which triggers the stomach to produce acids;
- I started a diet of no dairy, grains, sugar, caffeine, and rotation of foods that I could eat—but eventually everything still showed a lot of irritation and inflammation;
- The diet stopped helping all that much, stress level and neurotransmitters remained at extreme levels despite TONS of supplements and readjustment (later found out that my DNA mutation was causing the neurotransmitter imbalance, which was also exacerbating the GI problems)

Then things changed quite a bit after 2013 and 13+ months struggling with chronic sinusitis and bronchitis:
- I was in/out of Urgent care and the ER and they put me on course after course of various abx and steroids;
- soon, very obvious lyme, Bartonella and Babesia symptoms started to emerge and after lots of googling and researching, it was clear I had the infections and I started seeing an LLMD and got tested;
- other complications developed because I was ignorant and NONE of the doctors prescribing abx bothered to mention probiotics and I developed a severe systemic yeast/fungal overgrowth problem that I am still battling and might always, from what I've read. Plus, one of my DNA mutations suggests that I might always have problems metabolizing sugar;
- But in addition to those sx, I started developing these bizarre episodes that started in the middle of the night and would last for 12+ hours where I would have severe cramping (not gas) throughout my torso and upper GI that would kind of pulse on a 4-5 minute cycle, this would get worse and worse until finally I would projectile vomit everything I ate earlier (I had barely started digesting anything after all that time)—these were debilitating and terrifying experiences—I passed out twice trying to crawl to my phone to dial 911;
- While I often had cramping around mealtime and in the evening (during a certain part of the normal digestive cycle that occurs while you're asleep) , these extreme episodes occurred at a 4-5 week cycle;
- Throughout these episodes (about 7-8 months) I'd gone through various cycles of specific diets with no change in the episodes so it was pretty clear it had nothing to do with what I ate;
- Then someone here on the forum suggested "bell's palsy of the gut", which is from Bartonella—and it was like, EUREKA! that's it. I shared the info w/ my LLMD.
www.thehumansideoflyme.net/viewarticle.php?aid=62

hope this helps—

-p

Thanks everyone! Great information! I wonder if that's why he's pushing iv for me I throw up all the time.

Hmm.. good point traveler. I think the iv would be better than throwing up whole pills. I have diarrhea more than half the time on antibiotics if it would help that too I'd be happy. I get bad stomach aches and heart burn super bad from the pills.

But I can't get over not getting wet. And my son is a wild man what if he ripped it out? What if I got it stuck on wood when I was carrying it in or something?

But. Like used to garden said she wishes she used it sooner because it helped so much when oral didnt. Soooo....

I have no idea. I'd prefer oral. But if I'm puking it up all the time that sucks too. All I see are dollar signs going down the toilet. But I have to take my supplements which are pills anyway. My stomach is upset eating them but I don't have diarrhea as bad or puke quite as often. I don't know if it's a big enough difference to put a line in my arm to my heart though!!

Decisions decisions.... I think I will do whatever my doctor recommends. But it's nice to have the perspective of others. Thanks for sharing!

You'll get many opinions here. I disagree with some of them.
If you are vomiting, you will have trouble with the pills; a very hard time staying on a protocol.
I believe IV gets you better faster. That has been my experience.
It has been the experience also with many of my friends with lyme.

I was afraid like you, very....but you have to teach your son not to touch it & baths are working out fine.
I would have no problem keeping the line in.
There are no inconveniences to great for the healing I am receiving while on IV Rocephin.

In the end it is your decision.
My LLMD suggested it at go, right out of the gate, but I was scared.
I just wish I hadn't wasted time treating with multiple abx & herbals, when my IV Rocephin is slaying this Lyme.

Post Edited (Usedtogarden) : 11/13/2014 7:19:01 PM (GMT-7)

Yes, that's very difficult when you are so sick, especially when your doc is so busy & his brain is working at maximum capacity.
I really think they sometimes forget that our brains are barely functioning.
I am happy to hear he emails you back before the end of the day- how professional.
I couldn't count money at the store- so, I totally get the brain paralyses.
I was conscious & suffering, but not really 'there'.

You mentioned the vomiting, I did that, too & eventually went into anorexic-mode (still misdiagnosed at that time). I couldn't get anything down & was up all night vomiting.
I believe vomiting clearly indicates how infected you are.
Oral abx have to pass through the digestive system and twice through the liver before entering your blood stream.
IV abx will absorb more deeply into your body tissue and cross the blood brain barrier than oral abx.

I can only speak from my experiences and knowledge.
I believe the longer the spriochete are in your body, the more damage they will do, the more reproducing they will do & the harder it will be to get rid of them & heal.

Your doc knows your health and situation best; I think you are smart to follow his advice. Keep us posted!

My LLMD has me doing 3 shots of 2G Rocephin a week, and then oral the rest of the week. You get the benefits of the powerful dose, and oral Rocephin (Omnicef) with Bactrim for the other days, along with Flagyl on weekends to bust out any cysts that form. That might be a less invasive alternative you could bring up to see what your doc thinks. It seems to be working for me.

Well I just didn't eat when I was little. I'm thinking maybe I've been sick since childhood with something. But I got a bullseye rash when I was about... 16 or so? I can't remember at the mkment....huh... I'm 25 now.

I've been throwing up and passing out since I was 16 off and on. Those were my first symptoms to my mystery illness. I was treated with a month of docycline but I was so young not living with my parents anymore I never finished I don't think. I Just Don remember. No matter.

I'm sick as a dog now and actively trying to heal so.. ya haha

I have a very sensitive stomach- very. I can only report that IV Rocephin has not caused me any gi issues at all.
It has been much easier on my digestive system that the oral abx.

Keep in mind, always use probiotics when on abx for any reason.

Chloe- so glad to hear that both you & your friend are much better!
What iV meds was he on, for how long & what probiotics was he taking?

Post Edited (Usedtogarden) : 11/14/2014 8:34:48 AM (GMT-7)

I just posted some of this in another thread but I think it's applicable. I have been diagnosed with chronic lyme and I know I've been sick (actively) for 3 years before diagnosis (mostly GI and neuro issues):

I started on 200 mg a day of doxy.


I eventaully (two months in) added in tindamax (cyst buster)


Now I'm on ceftin instead of doxy, tindamax, and now planquil. (Like 2,400 mg a day total)Plus supplements (nothing fancy)


So I really do agree to work up to it. I have a very sensitive stomach but it's been ok with me. Nausea is there but I also feel like the meds are working. Like all lymies I have good and bad days


I personally would not be ok with going straight to IV treatments but I know plenty of people have. I'm happy with the protocols my doctor has followed. I always thought I needed to be on heavy abx from the beginning, but once I started doxy for the first time it was rough and I'm glad I had an adjustment period. Now we're really being more aggressive. (and for reference, I started low dose doxy in July, just went more aggressive in November...so 4 months of building)


Finally, it's ok to get a second opinion. Do your own research and also continue to advocate for yourself.

All of these protocols have the chance to not work for each person.What we want to use may not be what we can use. I started off using abx!

But remember, the choice is ultimately yours. You might want to bring up your concerns about your son with your LLMD too though - he should be aware of all of the possible complications to this.

Also ask what happens if IV just doesn't seem to be working out for you and your situation - kind of find out how he will respond if you decide that it's not going well.

And research carefully - or get help - about how to set it up, what it will entail, who will be at your house to do bandage changes when, how much your insurance will cover, and what you will need to provide, like covers for the IV and more.

Hang in there IHL - this is rough to get through, but it's not impossible!! I think it's a good idea to stop the BE spray as it's giving you a lot of issues. Be sure to discuss this with your doctor on Tues.

You can't just not do any thing about this though. So just take it one step at a time - you were worrying over things that have yet to happen. Today has enough worries for us.

Start fresh tomorrow. No BEG spray until you talk with your doc.

Are you detoxing? That will help control the herx.

Talk over the IV option with your doc, but don't start it that day - get some information starting with what your insurance will cover and more. We can help walk you through this, but not all the 'what if's' because there are just too many. I do have to say that if you wish to use pharmaceuticals, then IV's may be the way to go to possibly avoid your stomach issues. The abx bypass the stomach and go straight into the blood that way - but that has it's own complications. So please talk to your doctor.

One thing at a time - or you get overwhelmed.