sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
its my fault.
with all that has been going on, about a month ago i realized how sporadically i had been taking my daily mega-amox, and that i was down to a less than a week's worth.
so, i called in a refill. the pharmacy said no, no refills. he called my llmd. same answer, no refills. i called my llmd and begged for a refill until i could speak to him long-distance in a phone followup. same answer. no refill until then, which is a week from today.
meanwhile, i am going downhill faster and faster, accelerating into an out-of-control, splatting into trees kind of losing it, cognitively, emotionally, and dang, the neuropathies are so bad i wake up paralyzed with pain.
what the hey to do to stay afloat until a week from now???? any thoughts?
thanks- dilly
[ 07. January 2008, 06:18 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Dilly,
This would be horrid. I'm so sorry you are having to deal with this. If you have exhausted all resources of how to get more antibiotics, are there any herbs that can be taken to hold you over until you can get to a doctor to get more?
I know that I was taking Allicin (garlic) for awhile with abx, but I also keep reading about how it's a pretty potent abx all by itself. I can't say first hand if this would help, but desperation would have me wanting to try SOMETHING.
Hopefully someone will come by with more knowledge on this and help so bringing this note to the top.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thanks, Cathy.
i'm thinking maybe my best bet is to reach for big guns.. i have leftover zith and malarone and one other something or another from a year ago - am thinking to whomp those, but recognize my judgment is hugely impaired, so am hesitating for the moment.
dill in a pickle
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
dilly.,
my only suggestions are:
CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1200 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I can't imagine how taking the zith could hurt you and it stays in your system for awhile so why not??
That's what I'd do anyway....
My non professional 2 cents worth.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm with Charlie. Obviously neither of us are doctors, so this is not medical advice and only something I would do out of desperation if I were in your shoes.
I wasn't aware that you had any med's left over, but if I couldn't get a refill in a timely manner and had any others from the past....if I saw myself falling fast, I would be likely to try gong back on a past med.
I'm taking zith right now and had amoxy in the past. Again, please understand we aren't doctor's, but when you can't even get help as you fall harder and harder, sadly, we have to take this disease into our own hands at times.
As Betty says, someone may be able to help you from a local support group also, but I can't imagine that zith could hurt you, especially if you didn't have any bad reactions the first time you took it.
Good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
If it were me I would take the Zith
You gotta do what you gotta do!
Hope you feel better soon!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I don't know that I'd switch from one abx to the other only to switch back again. It sounds like you have a few days worth of amoxy ... then another few days until your appt.
I would just take the amoxy you have, then have a couple days off. Focus on detoxing on your days off. That way your body is accomplishing something.
We're in this for the long haul. A few days will make no difference. I've had to take a few days off twice and it was fine.
One time, I was going to Florida, so my PA told me just to stop the minocycline while I was there. It all turned out fine.
One thing, my pharmacy will loan me a three day supply on a medicine that I regularly get refilled. That may help you fill in the gap. Just tell them you can't get the refill from you doctor until next week, can they give you a few to hold you over.
But I would not take the zith. They don't do the same thing ... my daughter is on both amoxy and zith.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Dil,
Sorry to miss you last week. I had an awful cold and fever and spent most of the last week on the couch with Kleenex! It was a bad one, hope you had more fun than that!
Really sorry to hear that you are feeling worse recently and about the abx gap. I hope this is very temporary.....
SixKids makes some good points; I also had to take a break of several days while on amoxy last year, and it did not seem to hurt the overall trend. (Our doc does not believe in resistance, but I am not so sure....)
Can the pharmacy give you a 3-day supply until the next refill is called in?
However, under these circumstances, I would probably take the zith. If you do, please be very careful of your stomach, zith and amoxy together or close together do a number on the friendly flora & fauna....more probiotics are needed, and I suggest garlic for good measure too.
I hope you feel better soon and take good care whichever you do! Posts: 2557 | From home | Registered: Aug 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Ever see things that arent there?? Now MAY be the time to treat that sick pet you never thought of before!!
Seeing things that arent there is helpful in "SOME" instances!! like disappearing--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
thanks, guys and gals.
i didn't say it straight, no surprise there.
i ran out of ALL the amox a good 3 weeks ago, and hadn't been incredibly compliant taking the buggers for the prior month or two.
a few days off- i agree, no problem. but this is a much larger gap and really, really dumb on my part.
Just Don- for sure i have multiple sick pets if need be, and that's exactly what i will discover if for some reason my llmd won't refill my amox.
i've been noncompliant enough it occurs to me that he might fire me as a patient.
meanwhile, i am hanging tough on most of what is beating the bejeebers out of me right now, but what is doing me in the past days is EXTREME anxiety and jitters like i've had 40 cups of coffee instead of the modest 1/2 cup i begin my day with.
maybe something targeted for anxiety, even if it is just a symptom???
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Oh, and it doesn't help that you had a bunch of Lymies reading! LOL I misunderstood.
As you know, a week at this point is not going to make much of a difference. You might try an herb to help with symptoms until you can get back on abx ... oregano oil? garlic? both?
Then COMPLY!!!! Right on the Dr. B guidelines it says one of the top three reasons people don't get better is not complying with treatment! This is okay, as long as you learned your lesson.
It gets difficult, I admit, to take the meds when you're feeling good. You've got to, though.
Just wait out the week .... or treat your dog .... but don't take something different, that will really "tick-off" your LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear 6goofies:
alas, i don't even have the excuse of not taking abx because i was feeling good.
one 1/2 years into tx, i haven't done all that much improving at all, and it is all too easy to fall into the fogged-up mental pit of going with "what difference do the abx really make?"
this past summer i actually went off them altogether on purpose for about 2 months. lo- i found out very much the hard way what difference they make for me. even if they are not making me better, they are keeping me from falling all the way into an abyss.
kinda where i am heading so fast right now, and i don;t even have the excuse of ignorance.
what i have figured out for myself is that the long distance doc thing just does not work for me. since i almost never see him and i refuse to see ducks every part of tx becomes too abstract very quickly, and off i float to lala land.
back to the point. garlic, eh? and its the weekend so i can freely exhale that fire at home. not sure garlic is going to do it, but its a start.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Well, I don't think garlic will cure you .... but some natural abx may help hold you over for a week. The oregano oil is strong stuff ... it's REALLY good and good for your gut, too. Start out slowly! It can cause a herx!
I think the Cowden herbs are better, but you have to order them, so they wouldn't really do you any good right now. I'm taking Samento, Cumanda, Parsley and Burbur in addition to my abx.
Sorry you haven't seen improvement .... I saw GREAT improvement on Levaquin, have you tried bart treatment?
My LLMD is long distance, too .... I talk to the PA monthly and I just go to a local walk-in clinic here for my bloodwork so that I don't have to deal with a local duck.
Amoxy was a tough drug for me .... I don't know that I saw much improvement on it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
dilly, sorry you are feeling so bad. I know I'm not feeling your body. Nobody but yourself can know how YOU feel, but here 's my two cents worth....
You just went thru a very stressful time. You've got one week without abx. Your body is barely hanging on so, maybe you spend this week just focusing on detoxing your body.
Drinking tons of water. Good water. Filtered or bottled, not iced. Try drinking some distilled water. Search for my posts on the benefits I got from drinking distilled water two years ago or so. I would drink distilled for 5-7 days and a gallon a day.
Use some good quality chlorella (if you are'nt one of those people that have experienced what they consider bad herx like reactions)
Detox baths maybe morning and night. Scrubbing skin, no lotion after these baths and small chores to keep you moving after a hot bath to continue to sweat of toxins.
I wouldn't do anything too extreme, because obvisiously your body/immune system is already on alert.
If we could always control life, then we might be able to control our negative reactions to almost everything.
Oh yeah, can you spend the week resting more than normal? I hope your to do list is not also burdening?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Dilly,
I can certainly relate to getting off track on meds during a stressful time. If it weren't for my pill sorter who knows where I would be.
I managed to remain on most of my meds most of the time, but I got completely off schedule for the progesterone cream I started using last summer.
If there were any doubt about it helping me there is none now. I can really tell the difference.
I just started back on it today.
I hope you are able to get this straightened out and get back on track. Any thoughts about switching to an area LLMD? There are a lot to choose from around here.
Meanwhile, I think Pam gave you great advice on how to hold yourself over until you can get back on the meds.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dilly, if you lived here you would just let your support group know and someone would slip you extra Amoxi!!! Try it with your local support group.
Of COURSE that's illegal so that's a joke, right?
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Pam- thanks for the really excellent suggestions. Your head sounds clear- wow, you;re fortunate.
Sarah- yes, a joke, of course, thanks, and good to know of places where folks might share the same sense of humor.
Lyme Diva- you're right, an in town doc is possible here and i know who they are, and both are 20 minutes away at the most.
again, no excuse for not following the dotted line to the door of either one of them, just Lyme inertia and a ton of other stuff that comes out of the blue that always seems to trump the ongoing, forever lasting, chronic thing Lyme.
sigh. dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I had a duck do that to me once with an anti-depressant. I hadn't realized there were no refills. She wouldn't even call it in if I made the appt & promised to keep it.
It's positively maddening!!!
I know Buhner's herbs can be taken WITH ABX. I don't know Cowden at all.
The LL?ID recommended Buhner's Book "Healing Lyme" to me. He said the herbs do seem to give some people relief from symptoms.
This might be a good time to try it because you can add the ABX when you get them and starting without ABX you would definitely know if they were doing anything. You can call a local health food store & make sure they have them. I personally would take the leftover Zith as well, but that's just me & I'm not telling you to do that.
I just got some Andrographis, Cats Claw & He has to order the Japanese Knotwood w/resveratrol & the Smilax (sarsparilla)
The Astragalus is a no-no in late-stage Lyme.
I need to help you, but I DON'T KNOW WHAT TO DO!!!!!!!
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Actually checking out a local LLMD WOULD solve the problem of "too far away - out of mind".
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Dilly - Tried to send you a PM but your box is full. Please empty your box.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
emptied box.
hats off to the tequila lady...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Dilly, how are you doing? Did you do your detox bath this morning? lol
Just checking in to see if you are okay?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
No suggestions here but just saw this and you have my sympathy!!! I've also taken sudden NOSEDIVE.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi dilly,
How are you doing? Well I hope....
I forgot to suggest andrographis; it is one of the Buhner main herbs, and his book gives alot of good evidence for its use in our disease. I took it for about one year and I think it is strong and hits lyme.
So hopefully that and positive thinking (along with zith) can tide you over until you see the doctor?
Posts: 2557 | From home | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Pam- thanks for thinking about me.
weekends are difficult times to do anything just for me since i have a hugely energetic- even- when- Lymed- 5 year old boy who craves constant attention, and a DH who doesn't get a break all week who needs time off on weekends to stay sane.
the mom-me comes last in that equation- just the way things are. dilly comes first tomorrow, which is soon enough.
DLL- I am incredibly, all the way down to the bone sorry to hear that you're relapsing at all, much less right before attempting to go back into the work world.
For what it is worth, i think your instinct about not going too much in detail about Lyme with your employer was good and appropriate.
Hopefully you'll bounce back enough to give the job a real go so you KNOW what you're able to handle right now and what you can't. There seeems to be no way of knowing that without going forward.
Is it possible that the stress of even just contemplating such a huge step might have brought on some of the symptoms you're experiencing?
I've learned in the past 2 years that stress alone definitely amplifies my symptoms and even gives birth to brand new ones.
Whatever happens next, i'll be thinking about you and hoping for you that you land safely and in better health.
Vermont- i'll hope for the best and try to call you tomorrow. I'm finding writing very difficult and keeping up with emails and messages and PM's almost impossible. Calls are easier, so will try. that. Thanks for your thoughts and good wishes.
hugs, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
cave-
i'd never, never, ever, ever think of going that route either.
unless my multiple felines suddenly come down next week with a whatever that requires amox, then what is a person to do?
as a completely unrelated aside. i remember taking an ethics class in college decades ago, and one of the "problems" we had to consider was this-
a mother with no resources whatsoever of any kind has a sick child who requires meds. seemingly lacking any alternative, she steals the meds from a drug store.
the question: is she morally culpable for this theft?
let's just say for me that was a no-brainer question many years ago and still is today.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Dilly,
You have less than a week before your LLMD now right? I hope that the next few days are manageable for you.
Make sure you let your LLMD know you were not taking the Amoxy regularly, because you may have built up a resistance to it. And I would make an appointment with an LLMD in the area. It's really important to have somebody you can get into when you need to.
Maybe with a doctor nearby, you could see the doctor more regularly and that will keep you on program. You should also tell any doctor that you are having difficulty following a treatment regimen and you need advice on how to follow through.
Maybe a therapist could help? Or creating a chart that you mark off every day that you took your medications. You could even come up with a little punishment if you don't, like you don't get to wear your favorite slippers that night or something like that.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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quote:Originally posted by sometimesdilly: as a completely unrelated aside. i remember taking an ethics class in college decades ago, and one of the "problems" we had to consider was this-
a mother with no resources whatsoever of any kind has a sick child who requires meds. seemingly lacking any alternative, she steals the meds from a drug store.
the question: is she morally culpable for this theft?
I took a moral theology class in college as well .... she was NOT morally culpable for the theft ... or for stealing food either. Though she would be civilly culpable if she got caught.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Help is on the way.
Spoke with my LLMD this afternoon and all is well.
He wasn't happy with my noncompliance but gave me a pass because he understood the stress of all that has been going on in my family these past months.
I'll have abx tomorrow.
He thinks it is past time for me to go on IV's;
which works out fine logistically, because thanks to the support of AliG I actually lined up a local LLMD, and will begin with that DR in mid-March.
No more excuses-- time to gear all the way up again to battle the buggers.
Gigantic hugs and enormous thanks for all the support these past days. You all were a much needed life-line.
Better days are a'coming.... dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yay! Go dilly!
IV sounds like a great idea....I would love to do that but am allergic to rocephin.
Posts: 2557 | From home | Registered: Aug 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
hope you are hanging in there!
Melissa
Posts: 3905 | From USA | Registered: May 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
dilly, you might want to find out how many weeks your insurance company will cover? It will save you some heartache down the road when the insurance company decides they only want to pay for 4-6 weeks and send you a letter right in the middle of a herx period.
How's the LLMD going to go to bat for you needing it for months or longer?
The insurance companies can add so much stress to your life. Just yesterday I was on the phone with my primary medical insurance, which is paid from thru my husbands employer.
Every January I go thru more paperwork because I am primary with this insurance provider and Medicare is secondary. They primary insurance company loves to go into the system and change it.
Aaaarrrggggg!!!!!
Dilly, hang in there girl. Better days will be here soon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Map1131 has a good point about the insurance issues. My son was covered 2 1/2 years on oral abx by our insurance co. w/out question, but when he went on IV abx the insurance co. suddenly decided he didn't have Lyme! This was AFTER the Groshong line was in place at a cost of over $10K. Strangely enough, they paid to put the line in! Just wouldn't pay for the abx!!!! It was too late to turn back then. A phone call or two could help you to keep most of the hairs on your head, and out of court. Posts: 81 | From Iowa | Registered: May 2007
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posted
dilly, your story sounds familiar... i have an abx from a while back that has one more refill listed on it. Can i just give the pharm the rx number to get a refill? -- do they have to make any phone calls to confirm? ... just wondering? thx -- a long ride
Posts: 13 | From philadelphia | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
alongride-
not sure what you're saying. i know you can't be offering me YOUR amox. However incredibly generous and sweet that thought is, it is also illegal, and i wouldn't want any one else to misunderstand you.
in any case, i picked up my plentiful refill of amox today,and am a happy camper for the time being.
Pam and ?- sorry, can't remember- i will definitely check with my insurance company (cigna) about length of time i can do IV's.
They have been 90% great so far with paying for tx, but i know their written policy for Lyme tx allows coverage for only 30 days, 60 days max.
I have been dreading battling them about IV's and what follows if i can't get coverage, but the time is here.
It would sure help to know that IV's make an enormous, sustained difference. Lacking that certainty faith will have to do, and more importantly, i thank God my son will most likely be spared having to go that route.
more thanks for good advice and good intentions....
hugs- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Dilly,
Time to hit the big guns, huh?
Don't be so hard on yourself.
My non-compliance basically revolves around my diet lately.
I think we all have moments of rebellion. As if to say
I've had enough of this. Then we either realize that we need to do more
Or less (diet wise ) to go forward.
Hang in there. Sending you positive thoughts and a reprieve
For being human.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Sweetie!
I hope you're feeling well(er) this morning! I just wanted to let you know that my lower half stopped burning yesterday. So far today, (knock wood), the upper half seems to be doing better too.
I don't know what the cause was. I was told that sometimes when people come off the IV they experience a flare of Sx. (I'm guessing that means I'm not "cured" (bummer:()). My decline into stupidity doesn't seem to have come rushing back yet, like it was doing on the orals previously.
I'll have to let you know how I do. I'm also still wondering if the burning pain & crushing fatigue had anything to do with the Omnicef. I had switched to Azithromycin 4 days before the burning started to resolve.
I don't really know about the fatigue yet. I'm not sure if it was compounded by the constant pain. I hate pain! It makes me very cranky.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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