Lyme Disease Support Group

Hey everyone!

I got my port put in Friday. I got the first dose of clidamycin in the hospital.

I am now ready to start the two time a day infusions on Monday after home health acceses the port. Tryin to figure out what time I will have to get up to infuse before work everyday!

I was just diagnosed in June and all this is overwhelming! I now am up to 22 pills a day and IV med and heparin injections twice a day.

Is everyone else like me and on a ton of meds?? I am on a total of 5 antibiotics.

I am so glad to have found this site! We all need suppot and its nice to hear from people who know just where I am coming from!

Have a good day and God bless!

Yay for you, Raney! Treatment sucks, but it's necessary, so I AM happy for you!

I've never been on five abx at a time, the most I've taken is three. As for other pills, like supplements: I've either eradicated my Lyme or put the bugger into remission and I STILL take 15+ a day. The very most was 30+; I could substitute whole meals for pills.

It's one of those things you gotta keep on, it can get out of control so quickly.

But once again, yay!!!! Raney!

Hi Raney,

I have been on 5 antibiotics at once, but they were oral.

I got my Groshong (a central line in the chest. It always has the lines dangling, so there is no accessing it ) in about 2 1/2 weeks ago, but had a severe allergic reaction to Rocephin. We are letting my body settle down from that. I will have my first infusion of Vancomycin at an infusion center this Tuesday to make sure I don't have a reaction.

If all goes well, I should end up on 5 antibiotics within 4 weeks. I got Lyme through the placenta and I am 46 years old. I was diagnosed in November 2007. So I have been taking supplements like crazy for YEARS!!! At one point, I was taking 60 pills a day!

I now take about 30 pills, I use a detox shake that my cousin says smells like turkey s***. yeah, it is not very tasty, but I can tell a big difference when I take it and when I don't. I use 2 IV meds now until we get started with the antibiotics again.

Raney, I am happy for you that you found an aggressive practitioner. You have suffered long enough. Herxing can be bad. Don't be a hero and tough it out if it is terrible. Call your doc/NP.

I also had the heart rate issues. I had bad reactions to Propranolol, Bystolic, Wellbutrin, Xanax, Klonopin, that's all I can think of now. Of course, they could not find the cause.

After my daughter had 2 life-threatening events within 6 wks of each other, I felt like I was on the verge of a nervous breakdown. So I saw a Psych doc, making it official that I was crazy all along! He put me on Valium and my resting heart rate went from 120-140 down to 68-76! I just take 5 mg every night. Boy do I sleep like a baby!

I hope this helps you. If you have any questions you think I could answer, you could PM me. It is always hard to get on here. It is VERY painful to type and I get confused and forget to follow up on the threads that I have made comments on or even started myself! LOL. Gotta laugh!

God bless you! I pray that He gets you through this and brings complete healing to you!

Goob

raney you poor thing...22 pills? i hope that is all supplements?!

Hey you all! Thanks for the YAYS! Its been 4 days with new port and IV Clindamycin. Well..leave it up to me to get in trouble from the start!! I my port was accessed on Monday by home healh and I got my 2nd dose (the first being in the hospital)

It kinda stung alittle during the infusion but no where near painful. The nurse did not check for blood return! She flushed and hooked me up! Ok, so at this point, I am not feeling comfortable.

The med finished and I was ok. She had to get the cap that goes on the end of the port tube out of her trash pile she made, stating earlier we didnt need it! Well, long story short,I began to hurt pretty bad tuesday, very sore and chest muscles hurt and was swollen some.

That night I, which was last night, I flushed and around my port area blew up like a balloon! Talking about painful!Ended up in ER, the access needle in my tissue, not in my port! Either it came out or was never in.

Then they done a port gram, and it showed that the acutal port was leaking too. So I was sent home with instructions to see my surgeon today. I ended up back in the OR for port revison.

He stated he checked everything, repositioned it, and flushed with scan and no leaking was noted. So I got to keep this one.

I checked for blood return when I got home and its good. I just am really hoping this port works good from here out. I am confused because I got different answers from differnt MD's.

So the begining treatment phase has not been great but hopefully will get better. I really need to read up on ports.

I have read but what and when does herxing start? I'm guessing it cycles? I am keeping up with my temp daily and symptons daily.

I have not started the 2 pills to help me get rid of toxins. I really need to get those started. I have to ask what kind of shake you have that taste like turkey s***?? LOL

I am going to take it easy the next few days and work from home.I jumped right back to work after the first surgery friday, think I may have over done it.

Thank you all for your comments, stories, and encouragement!

LOL my "detox stuff" is cholestyramine... and if I sit and convince myself over and over it smells like Tang, its not so bad... but uggggh the texture is horrible.. reminds me of how recycled paper mache looks... teeny pieces of paper fiber floating around!! NEXT TIME I will buy the capsules, not the powder! So gross!

Hi Raney,

I am so sorry you have had trouble with your port. I have had 3 Groshongs, 1 port and 1 PICC line. The port was TERRIBLE. Nothing but problems and I ended up getting septic from it. The Groshongs have been great.

The reason that I have had so many is that I get blood clots in them. My new Lyme doc FINALLY checked me for clotting disorders...and at my first visit! Imagine that...he listened! So now I am on aspirin, Vit E, Vit C and Fish Oil.

The detox stuff that smells like turkey s*** is from Metagenics. It is Ultra Clear Plus. I get the Berry flavor. I know that for yeast it is not good to mix it the way I do, but it is the only way I can get it down. I use Tropicana Tangerine/Orange juice 8oz and about 6 frozen unsweetened strawberries and blend it with 2 scoops of the powder.

I also take their AdvaClear that helps with clearing the toxins through the liver. Those are pills.

I hope your port works from here on out, but if not, you might want to do some research to see if you would want to do the Groshong. It is an older type and NOT preferred by most docs, but I LOVE it!!! NO needle sticks. You just always have the line hanging out of your chest.

Let us know how it goes!

Goob