I finally got my IVIG approved for a dose that should get my IgG back into the normal range. This should finally give me a fighting chance at fighting these infections. Had one dose, yay!
Then my infusion co called today and told me that my doctor has decided to pull my IV antibiotics, he's only doing port maintenance. What?
Then local CVS called to tell me that they had my new oral meds, amoxil and levaquin...
I can't stop crying. I want to get better I just can't get a chance!
I'm scheduled to see my doc next week, I don't understand why he couldn't wait to discuss these changes then. I wanted to discuss trying a cyst buster like Tindamax, have never been on one more than a few days...
I'm not in a good place right now mentally
Posted by desertwind (Member # 25256) on :
So sorry to hear that!
Why would he pull your IV meds without discussing it with you first?
Can you call him or the PA/NP and speak with them? How can you not feel overwhelmed by this....It's just never easy. Hang in there. DW
Posted by skies (Member # 28064) on :
So sorry!!! I would call as well. I'd probably leave a message on the urgent line so they call back quicky. I can't believe they would do that without a discussion.
Try to hang in there... God bless.
Posted by Rumigirl (Member # 15091) on :
Oh, sammy, this is terrible! This is not your local doc, right? We should talk on the phone tonight or tomorrow. I'll help you strategize here.
You so need a knight in shining armor here---or a fairy godmother!!
Let yourself cry and feel your feelings. And then we'll pick up the pieces and figure a way forward. I will check on a few
relevant things from this end to help figure out what's going on with the doc. As you know, the politics are not favorable right
now here----more than ever. But never fear, where there's a will, there is a way.
Now, about that fairy godmother! (Not to make light of the situation at all).
Posted by Keebler (Member # 12673) on :
- This may be a political decision forced upon him. If so, he may not be allowed to discuss much with the patient.
Insurance may also have lowered the boom.
It's important not to guess, though, and get the facts from the source. It is very odd, and unprofessional for you not to have been notified FIRST, especially as they ordered new orals Rx for you.
Did someone at his office miss calling you? If so, first, find out what happen. There may be a logical explanation. Can't imagine what - but I've been very upset before (sometimes understandably) but when I found out details, the glitches seemed unavoidable.
I assume you've not called your doctor's office yet (or you would have said) but if it's still before 5 pm in your time zone, I suggest finding out directly from him or his office manager.
Or try tomorrow. There has to be an explanation. It could even be due to a shortage or quality control issue.
Still, there is always another way - many ways. Really. MANY OTHER WAYS. -
Posted by poppy (Member # 5355) on :
I think this is politics and the persecution in that state of all lyme docs. Nothing to do with your particular case probably. Bet there were very many other calls like yours to other patients too.
You might want to figure out whether it is still worthwhile to travel long distance next week for your appointment or wait until things are clearer in that state.
Posted by Keebler (Member # 12673) on :
- Feeling like giving up? Well, it's okay to feel that way. In fact, if you didn't I think something would be wrong.
Just honor where you are this moment in time and nurture yourself. Don't try to change your feelings as they are natural reactions. They are just feelings / thoughts, though, so don't let them kidnap you.
In a little while, as you eat some nutritious & delicious food (with protein), have a cup of Green Tea (I watch too many British dramas where a cup of tea is offered as a cure to all heartbreak and sadness - and I find it does help, actually) . . . you will have other feelings. Feelings cycle. That we know.
The water in the river is never the same.
We also know that there are many other ways to approach this and you don't have to have all the answers or options right now. Just take care of yourself today, tonight. Focus on that.
Find something of beauty to appreciate. And never stop that action of appreciating beauty, skill, workmanship, art, craft, humor, color, nature, music, cinema . . . and love.
Even if we can't participate as we once did or wish we could, I know that I can appreciate that some of these things even exist and hope for the days when I can be more of a participant.
For now, I can appreciate how others go about certain activities. For now, I am still entranced at so much about life, even from the sidelines.
I hope you can become entranced in some activity or interest, on any level - & enchanted by something you can't quite touch but will touch your soul. Even in your dreams. Do dream. -
Posted by lax mom (Member # 38743) on :
sammy: Is there a possibility that he got your monthly lab results and based his decision on that?
He didn't order the port removed, so he's not finished with IV.
Can you focus on the wonderful positive that is the IVIG?
I know that this feels like a catastrophe, but I think your LLMD must have a good reason that is not based on the current political climate in that state.
He is not leaving you out in the cold and your treatment is not over. He has prescribed orals...by all means take them. They will kill the bugs in the meantime.
Posted by Dogsandcats (Member # 28544) on :
So sorry - you have really been put through the wringer.
Go ahead and feel all the feelings - and start calling tomorrow. It just is no fun dealing with being sick and then all the other stuff that goes with it.
Maybe it was a clerical error? Sounds fluffy, but it does happen.
Hugs - keep us posted.
Posted by Sammi (Member # 110) on :
sammy, I am so happy about the IVIG.
I am very sorry about the IV meds. I agree with lax mom though. There must be a good reason for the doctor stopping them like this. I would call. It is good that oral meds were ordered in the meantime.
Hang in there. Let us know what you find out.
Posted by poppy (Member # 5355) on :
Sorry, lax mom, I do not agree that her doc must have a reason not related to that state's current politics. On what basis do you make this statement?
Anyone who has lost several lyme doctors due to persecution over the years would not be making such assumptions, with no evidence for such optimism.
It is time for everyone to realize that taking out doctors HAS AN EFFECT ON PATIENTS. Is this not obvious?
Posted by Lymetoo (Member # 743) on :
Sammy... I'm so sorry to hear this. I PRAY things will work out for you! What a battle!
Posted by faithful777 (Member # 22872) on :
I hope you can work things out with your doctor.
Posted by lax mom (Member # 38743) on :
quote:Originally posted by sammy:
I'm scheduled to see my doc next week, I don't understand why he couldn't wait to discuss these changes then.
I think that's the reason right there. He's waiting until he sees you to authorize more IV.
Posted by lyme in Putnam (Member # 11561) on :
Last to give advice but one day at a time. God bless.
Posted by Jane2904 (Member # 15917) on :
Sorry to hear this. Hope things get all turned around in a positive way for you.
Posted by Sammi (Member # 110) on :
sammy, did you find out anything?
Posted by seibertneurolyme (Member # 6416) on :
Thinking of you.
I know how frightening it is to be fired by docs -- it happened to Steve several times over the years.
But so far the doc has not given up on you.
You need to find out the reason for the change in meds and then move forward from there.
Orals are better than nothing and sometimes they work just as well or even better than IV's.
Maybe the orals with the addition of the timdamax or flagyl would be worth a try.
Bea Seibert
Posted by Sammi (Member # 110) on :
sammy, have you seen the doctor? How are you doing?
Posted by we'll win (Member # 11112) on :
Sammy,
Hang in there. We've all gone through these variations in different ways- time and time again.
In fact I posted a few hours earlier how for a month I could not have my ketek prescription filled with the pharmacy, wholesaler, and manufacturer all pointing fingers at each other. Here I had been doing fairly well (on omniceff and ketek during the week with added flagyll on the weekends), and know once again, I am going downhill. Though an independent pharmacy has now filled my ketek prescription it does not look like the ketekthat I have been taking for years. So I am bummed out too.
So Sammy, just hang in there. We are all for you. One day we just may succeed against the forces that seem to want to keep us from getting better.
We care.
One of your compatriots. Keep smiling through the tears.
We'll Win
Posted by carolann2013 (Member # 39964) on :
So sorry Sammi. I have been feeling like that too.
Praying that everything works out for you.
Posted by Dekrator48 (Member # 18239) on :
Praying for you sammy.
May God lift you up out of the pit and open the eyes of the blind.
Posted by sammy (Member # 13952) on :
Thank you friends
I found out yesterday that my insurance co is no longer covering ANY Lyme patients IV antibiotics. Was told this when I ordered my supplies for IVIG.
They are also not wanting to pay for my May antibiotic infusions so the infusion co is fighting them for that right now. This is scary because if they don't pay I could be left with a huge out of pocket bill!
I still don't know what prompted my doctor's office to change their orders so suddenly.
I have my monthly follow-up appt with my Lyme doc so I'll try to find out what's going on. And if they'd like me to stay on orals for awhile then I'd like to have some better coverage so I don't relapse like I've done in the past.
So if you will, think of me or pray for me today as I have my appt. That my doctor will listen, be patient, and open minded. That in the end, he will prescribe for me what will be the best for these next couple months.
Thanks so much for caring!!!
Posted by Catgirl (Member # 31149) on :
Hang in there Sammy. :)
Posted by sparkle7 (Member # 10397) on :
Best of luck with everything! Sometimes, when one door closes, another opens up.
Posted by Sammi (Member # 110) on :
[QUOTE]Originally posted by sammy: [QB] I still don't know what prompted my doctor's office to change their orders so suddenly.
Maybe the doctor's office was contacted by your insurance company?
I pray that your appointment goes well and that you will get what is best for you. Please let us know how your appointment went.
Posted by skies (Member # 28064) on :
Yes, hoping all goes well. Let us know how you're doing when you're able...
Posted by MattH (Member # 30846) on :
Sammy,
Have you considered PE-1 or Rife or Doug Coil (I realize Doug Coil is a type of Rife) along with herbal ABX?
My liver enzymes went up and the pain in my right side was awful back in Dec. I thought I was making progress on the ABX but it was slow, 18 months on mino and other ABX.
I had to stop ABX and thought I would be back on ABX in month or two and did all the liver treatments (milk thistle, caster oil packs etc.). 6 months later the liver is still not there. I went on the Dr K cocktail and will start using a Doug Coil machine early next week.
I was ready to try bicillin injections back in January to help get around the liver issues but the insurance gave me three months of run around and by then I had already started the Dr K cocktail.
The new information from the researchers in Norway suggest that in my case Pharma ABX would not have gotten be all the way there. So I needed to look at other options like Rife. I also did several UVB/Ozone IV's to help knock down the bacterial load until I could research and then get a machine.
All the Best, MattH
Posted by Sammi (Member # 110) on :
sammy, how did it go? I hope well!
Posted by CherylSue (Member # 13077) on :
Sammy,
We've all felt that way one time or another. Lyme does that to us.
Hang in there. It does get better. Finding a good doctor, treatment, and prayer helps.
Hugs
Posted by poppy (Member # 5355) on :
That sheds some light possibly on the change in direction. Perhaps not ordering IV if it is known the ins won't pay.
Posted by sammy (Member # 13952) on :
My doc thought it was time to transition me to oral meds.
A nurse was supposed to call to discuss this with me. Instead, as you all know, I got the news from my infusion co and CVS pharmacy.
My doc did not know about the ins change.
So it was the lack of communication that upset me so much. I like to be very involved in my healthcare decisions and here they are making huge decisions without even discussing it with me first!
My follow-up appt went well. We made some changes to the antibiotics, no more pulsing, both are taken daily.
I also get to try tindamax, for now it is only 2-3 days per week. If I do well with it I can call and request a new script to take it daily. I'm pretty excited to try this!
I just hope and pray that I'll be able to get better with oral meds this time. Now that I'm on IVIG maybe my body will be strong enough. Before I always relapsed pretty badly within a couple weeks.
Posted by Sammi (Member # 110) on :
sammy, thanks so much for the update.
I am sorry the nurse did not call you like she/he was supposed to. That is really upsetting because then you try to figure out what is going on when there is no way you can! Arrggh.
I hope the IVIG will help you respond better. I am having problems with this myself right now, so I know it is frustrating. I also hope Tindamax is a great med for you.
Good luck with your new protocol!
Posted by randibear (Member # 11290) on :
i am so sorry this happened. i think we're going to start seeing more of this.
my friend was just told they would not refill her arthritis meds. she has hodgson's also. reason, the insurance company just decided not to pay anymore.
she's been on it awhile..
Posted by Dekrator48 (Member # 18239) on :
Praying that the oral meds will help get you well!
Posted by Rumigirl (Member # 15091) on :
Well, finally you have some answers---although not quite what you would want. The tinidazole is huge though---majorly important. I presume that your doc has you on another abx for a different form of the Bb, too. Maybe with the tinidazole this can help turn a corner for you. Keep us updated.
What an unreal saga this all is. No one not involved would believe it. Preaching to the choir there.
Love and prayers for a good response to the tinidazole, etc.
Posted by dbpei (Member # 33574) on :
Sending hugs and prayers that these new oral meds will be a step in the right direction for you Sammy . What a painful journey this can be! You sound much more hopeful. Yay!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)