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IV vs. Oral antibiotics. Beating a dead horse I know-

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Posted 12/28/2014 1:05 AM (GMT 0)
Soooo... who does what? When is it time for IV? I know not everyone has to do IV, so what qualifies the individual need for it? I'd like to stick to orals, but say I'm a year in and I havent made much progress, would that be a good time? Or 6 months?

Let me guess, it's totally and completely different for everyone? If thats the case, would anyone mind telling me their personal story?

I know there has to be a ton of information out there, but I just googled stuff for about 2 hours and still cant seem to find the answers I was looking for. I want to know in what instance LLMDs or LLNDs recommend IV.
Posted 12/28/2014 6:25 AM (GMT 0)
Hi IHL--I have been taking 3 oral abx for 9 months now with little improvement. I went to see a new LLMD and she has ordered an IV abx starting soon. She said that when you have had LD a long time it will take longer to show improvement. My whole life is nothing but being sick or tired so I will take any small drop of
progress that I can get!

Post Edited (sueg) : 12/28/2014 2:35:46 PM (GMT-7)

Posted 12/28/2014 1:59 PM (GMT 0)
When I was approved for IV but turned down by my insurance company, I went ballistic. I appealed and also was denied. That's when I found my current llmd. She told me to forget about IV cuz I was expending all my energy on fighting the system instead of getting well. She told me that there are other ways to treat and treat she did. So yes it depends on the person but there are also ways to continue treatment by switching up,and using new combinations. I think either way it's a long hard journey.
Posted 12/28/2014 3:18 PM (GMT 0)
I did 15 months of oral abx (different combinations), and have been doing 13 months of a modified Cowden's now. I'm supposed to go on IV doxy for a systemic Yersiniosis. My dr did several tests on me, and came to the conclusion it wasn't present in my intestines anymore, but highly active in my blood. So I'm forced to take an IV course to get this out of my system.

He wants to wait with IV abx for Lyme for now. It's hard on the system, that and my very high bacterial load + detoxing issues will be too hard for me to handle. He wants to keep a close eye on my blood results so I don't get in trouble.

If I were you, with all the problems you're having, I would just wait and see. Treatments can suddenly get changed by your llmd. I thought mine would have suggested iv abx for LD by now, but he hasn't yet. I'm still herxing badly on the herbal protocol.
Posted 12/28/2014 3:28 PM (GMT 0)
I'm going into my 4th month of IV abx. My doctor started me on them right away because I had been infected for 10 years and my issues were mostly neurological and nervous system. I too was nervous at first but now I am so glad I did. My symptoms have greatly improved and I am starting to feel like a normal healthy person again.
Posted 12/28/2014 4:28 PM (GMT 0)
Thank you, IHL, for posting this question. I was wondering the same thing!

I've been on orals for 3 months and have not made any progress. I was expecting to notice something by now.
Posted 12/28/2014 4:41 PM (GMT 0)
I feel like I can't get eno if he information about this stuff. And everything is so conflicting. I'm not going to worry about this stuff too much at this point. I figure having the knowledge before my doctor suggests something like this is wise.

I think if my doctor recommended IV for me I would do it. By the time I saw him I was already panicked about my health. And I know we are all desperate to feel better. I'd do anything to have my health back. I know a lot of people do IV and everything works out fine for them. It just seems so scary. And I'd be embarrassed of people seeing it. I'm still in the mind set of trying to hide my illness from the world..

I heard my doctor does a lot of IV. and I've heard that he is a very sought after because people have really good results under his care. Usually people have to wait 3 or 4 months to see him, and he saw me after 3 weeks. I'm not sure why he decided to call me personally or why he decided to get me on the schedule so fast. I'm pretty sure it's because of my heart stuff. But I'm thankful. Extremely thankful.

I want to give orals a fair chance. But how long is fair? I'll probably never know. But that's OK too, I'm choosing to trust my doctor and educate myself to the point where I feel confident making informed decisions. I know not even our doctors are always right, and I need to feel comfortable with whatever my treatment is. So I need to learn learn learn!!

I'll continue my search for knowledge, thank you all so much for you replies!
Posted 12/28/2014 5:02 PM (GMT 0)
Springsjean.....

Which combo of meds finally worked for you?
Posted 12/28/2014 6:37 PM (GMT 0)
IHL—
I have probably already referred you to this review of my IV experiences but here it is again—I did update it this AM:
www.healingwell.com/community/default.aspx?f=30&m=3233665

If I could have, I would have experimented with abx first before doing IV but my gut is too messy to do that. I, too, was worried and confused about the IV process and for good reason, there are many components to it and I couldn't get a straight answer from any of the nurses and healthcare specialists I spoke to (incl. my LLMD and her nurse and the home health care nurses and the hospital nurses). It was a cluster bomb of confusion. But it's all perfectly clear now —to those of us who are mid-IV treatment so ask any questions you want. I regret not getting more answers in the beginning.

Regarding people seeing it—it's wintertime so easy to cover up my port bandaging with high collars or scarves. Summertime will be very challenging—not that I care who sees it but I'm having severe reactions to the sun hitting the bandage. Not sure if it's easier with a PICC? Easily covered with a longer sleeve?

-p
Posted 12/28/2014 7:01 PM (GMT 0)
I read through your thread. Still it seems easier and less stressful to just swallow pills. So I'm happy that I don't have to deal with any lines or ports. But if I ever do I think it's important to know about it. And how better to learn than through someone's personal experience?

And at some point I'm going to have to stop worrying about other people knowing. It's so hard to talk about you know? I don't like pity, I don't like ignorance, and I hate feeling weak. But this is my reality! I'm sick with tick borne infections and I'm fighting my way through the long, painful, heartbreaking days. And all with a smile! Well, most days with a smile. It's a gift to be able to laugh at yourself.

Pirouette, do you feel like your port is what you needed to heal? 18 months is a long time. Do you take orals too? Does having an IV or port mean that you bypass all the digestion issues? It seems like you would need a lot more probiotics with the stronger meds.

I just don't know if I could handle having an IV or a port. It seems like it would make me a nervous wreck. I'd be worried about it all the time I'm sure. Is it something that you just got used to? We're you happy to get it or were you scared?
Posted 12/28/2014 7:42 PM (GMT 0)
Yes! If you can do the pills try that first. I would also talk w/ your LLMD about taking herbs simultaneously. They hybrid approach has been helpful for me.

I do not take any abx orally—I have major GI trouble, which is why we went straight to IV, which goes straight into your bloodstream—not your stomach and GI. I was terrified of making the GI issues worse. Now, I can't take my entire protocol by IV, unfortunately, but most of it.

I was more worried about abx effect on the GI than anything involved with the IV and have felt relieved that I have the IV option available to me. I just didn't want more problems in the gut (you have to eat 3x a day, and when you have issues every time you eat, it's like non-stop drama all day, every day—on top of everything else).

Also, I think I've had yeast problems my entire life, which contribute to the GI issues—I think I was born with it. So, it's all a matter of perspective—what you're willing to tolerate or sacrifice on your journey.

I am hoping to make huge progress with the IV abx some day… !
Posted 12/28/2014 8:04 PM (GMT 0)
I am actually taking alot of suuplements and herbs along with my abx. It all adds up to about 20-30 pills twice a day. yuck. It's a meal in itself! I take Meriva, MC-BFM-1, Serrapeptase, Hawthorne, a giant amount of Cats Claw, Capryllic, AKBA, B Vitamin Injections, DGL, NAC, Xymogen 100 billion Probiotics, Rifampin, Azithromycin, BEG nasal spray, Boric Acid, MyImmune, Colloidal Silver, Hydrocortisone, Tramadol. So I have inflammation, adrenal, biofilm busters, abx, yeast protection AND probiotics, detoxing help. I do alot of detox teas and lemon water...etc. Oil pulling.

I'd recommend anyone with Lyme to take all of this stuff. I think the reason I haven't "herxed" really bad is because I'm covering and supporting so many bases. Or maybe I'm downplaying the situation I was just in the last few weeks. I've looked forward to having a really bad die off reaction just to know that my treatment is working. I'm still having ups and downs- but nothing that I haven't ever experienced before in the last 6-8 years since I've been sick. So I can't really say that my worsening is die off, maybe it's just a flare like I've always had.

Anyway, back to the subject at hand- What kind of GI issues? I've had alot of those, hahaha. I figure the ABX are contributing a little bit. But thinking back I've had issues since my son was born in 2011. I actually went number 2 in the car when he was about 6 weeks old. SO HUMILIATING. But it happened.. Funny not funny. I have stomach aches, my doctor just informed me that my chart shows I've recently lost 15 pounds in only 27 days?! I don't know where it went! I only weigh about 95 anyways. My ideal weight is at least 105. I'm really really short and just small. But when I drop below 90 pounds I know it's time to worry.

And as far as IV's go, like I said I'd do it if I felt like I had to. I'm just really happy that I don't have to worry about it today, or tomorrow, or probably ever! I hope I get that lucky. But I do find it fascinating and would love to know every little thing I possibly can about it anyway.
Posted 12/28/2014 9:55 PM (GMT 0)
Springsjean--why would your insurance deny coverage? My dr said that should not be a problem b/c of my CDC positive lyme
test from Igenex.

Did they give you a reason?
Posted 12/28/2014 10:30 PM (GMT 0)
IHL, I'd be willing to bet that most of that weight loss was from having your innerds empty. I've lost 7 lbs in less than 10 minutes due to having constipation and then finally being able to "go" - most doc's wouldn't believe me, although one doc got to see the difference in weight before and after!

And I'm close to 90 pills a day with all the stuff I get to take now - and my doc wonders why I don't eat enough food - but I have the opposite problem - not eating enough food and I gain weight!!!! eyes My body assumes that it needs to conserve energy when I don't eat enough, so I have no energy and still gain weight, even on 900 calories a day!

Why do you take Boric Acid?
Posted 12/28/2014 11:29 PM (GMT 0)
Boric acid vaginally as a preventive measure. This was actually between September and October when I lost the weight. Last time I checked I was 99, so you're right I probably lost some major weight again hahaha.
Posted 12/28/2014 11:41 PM (GMT 0)
And that doesn't burn???? I can't use boric acid even in eye drops because of it burning so badly!

I would still encourage you to eat plenty of the healthy high fat foods such as nut butters, nuts, avocados, bananas and other things. Being underweight just gives the body one more thing to deal with while it's trying to heal.
Posted 12/28/2014 11:47 PM (GMT 0)
No it doesn't burn at all. I think it's some special kind because he warned me not to use anything but what I get from him. I do it once a week if I even remember.

I eat a whole bunch of nice good fats. It seems like the more I eat the more I lose anyway. It's been a constant battle for a really long time for me. I just keep eating good food everyday and I hope as I heal I won't have the issue anymore. It comes in waves like everything else. I'm used of stepping on the scale and seeing a 5 or 10 pound difference even within a week. But 15 pounds is pretty bad. The worst ever as far as I know.
Posted 12/29/2014 3:38 PM (GMT 0)
I used to wish I had the loosing weight issues instead of the gaining weight issues - but not any more!!! I'm so sorry that you are struggling so much with this and everything else. Know that we are all here to encourage you and do our best to help you through this time.

((((((((hugs))))))))
Posted 12/29/2014 5:02 PM (GMT 0)
From what I've seen over the years on here, what determines when someone gets IV abx has more to do with the doctor than the person's level or involvement of infection.

My current doc wanted me to use IV abx this time around, but I said no, I know what works for me and I've already been an abx failure once. True that I know more this time around and it might work, but I know that the herbs work for me.
Posted 12/29/2014 5:03 PM (GMT 0)
How do you know if antibiotics failed??
Posted 12/29/2014 5:37 PM (GMT 0)
Because all I did was get worse - to the point of having seizures, being so severely cognitively compromised that I couldn't even figure out how to log on to the forum for a year, couldn't follow even simple written instructions and things like that. It was if my symptoms 'blew up'. I likely should have been in the hospital, but I figured that would have signed my death warrant, as Lyme isn't even recognized here in Arkansas.

I also developed serious rage issues, and paranoia issues. Not easy to get through, but thanks to one daughter and my most steadfast hubby, I made it through their determination that I not be 'admitted' somewhere or just to leave me to my own demise.

I had used abx for a full 12 months, so it wasn't "just" a herx. I had gotten through them - although, had I or my LLMD at that time known how important detoxing was, I likely wouldn't have suffered as much. That's one of the reasons I'm always saying detox, detox, detox!! It's amazing how much you can avoid by not allowing those toxins to get to higher levels.
Posted 12/29/2014 5:52 PM (GMT 0)
Now I'm beginning to see the importance of not getting constipated. I think that's what screwed me. The toxins just weren't leaving my body. Maybe?

I'm so so sorry you had to go through all of that :( breaks my heart.
You're lucky to have you husband and daughter. It's incredible how resilient humans can be.
Posted 12/29/2014 5:58 PM (GMT 0)
I'm also very, very blessed to have had this forum for all of these years! I too relied on this forum and it's members to help me through all of this, to know that it wasn't "just me" and get that all important support and understanding. But, yes, I still thank them each for helping me through that period of my life. It's also a large part of why my daughter is in Epidemiology now too. :-) Although she said she's seen enough sickness without adequate answers, so she's in the side that tracks what people can do to stay healthy.

Yes, I think that's what triggered this for you. Toxins started building in large numbers when you got constipated. Many of us here have leaky gut, which is when nutrients and toxins can come and go through the walls of the intestines, and when you are constipated, a much larger number of toxins can be passed back into the body - at least that's my take on it and by following those thoughts, I have managed to keep myself from having to go through too many episodes like you just experienced. It doesn't take many of them to get a person to figure out how to avoid them!!
Posted 12/29/2014 6:17 PM (GMT 0)
For sure. I just took all 3 of my laxatives! Maybe I'm not as cleared out as I thought I was, or the damage has simply been done. I found it interesting that someone else said the detox tea constipated them. So ill keep that in mind also.

My poor son has been constipated too :( I gave him a bunch of chia seeds and a tiny bit of his miralax and he was in the bathroom on his potty within 10 minutes. I'm glad that it's so effective for him.

The joys of lyme... ugh. I can't wait to get better at all of this stuff! I've learned soooo much on this forum. I'm still pretty new to it all- hopefully in another few months I'll figure out what works for me. I'm looking forward to having more confidence!

It really sucks that as lyme patients we are left to figure all of this out on our own. Sure we have our doctors to help us but they don't always have the answer either. And what works for one person can be detrimental to another. It's so frustrating!!

Lesson learned- go SLOW! even if you've done something a thousand times it is capable of being different even that ONE time. Ugh.
Posted 12/29/2014 6:26 PM (GMT 0)
I think we end up being almost hyper aware of our bodies - at least I did/am. I have heart palps that I tell my doc about, but encourage her to understand that I'm hyper aware of these things due to survival strategies that I had to employ while trying to heal Lyme the first time around.

You will learn what symptoms to pay the most attention to (like constipation, inflammation that you can feel or see & unusual dizziness), and what ones to just try to reduce the severity of, but don't worry about (like tightness in your hands - I have that today). You will also learn what works best for you to help you detox and stay the course. I still use Benedryl to help suppress CNS symptoms when I herx, for example.

I would encourage you to get the MTHFR testing done so that you know if you have issues with that - there are treatments that help it, so it's beneficial to know!

And keep on truckin'! Remember you aren't super woman any longer (wink) and that you need to put yourself above others so that you can be there for them. Otherwise you'll just be in bed.
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