I have not been around much as I been having a really hard time. I started IV doxy 3 months ago, and after having problems with the sun, I had to stop. They started me on monday, on IV rocphin, 2 grams every 24 hours. I am so tired all the time now. I am sleeping 18-20 hours a day, and even when I am up I am fighting to stay awake. Also I had to go to the ER, as I am having miganies non-stop. I got IV durgs thursday for pain, and to help with the migraine and one hour after I got home from the ER the mirgaine was already back.
Could this be the abx? Or somthing else?
I have no enery at all. I went to the cardio doctor on tuesday, and had my pacer checked, they are sending me for a stress test, and echo, the echo is to check to see if my heart has enlarger with the lymes, and I am having more chest pain and racing heart. So if the test come back the way the doctor thinks I am going to have to go back for mapping and another abltion. I am so tired to all this. I been sick for ten years. My body keeps getting sicker. When do things start getting better? I been stuck in my home for the last 16 month. I miss working, I am never there for my son as I am always sick. An outing for me is going to the doctor, and I sadly enjoy my home health nurse coming 3 times a week as I can talk to some one who understands. How sad is that. Due to everything with my body I am on IV saline daily, one liter a day, and then the rocphin, I use oxygen as needed. As for all the joint pain they just keep giving me pain pacthes (febtanyl) I wish there was somthing I could do just to stop the pain, insead of being on pain meds.
Sorry of venting I just want a life again. I getting depressed, it fact last week I asked my doctor to start a anti- depressant (I hated asking, but I felt I needed too)
Also I have alot of Problems with my PICC line I am no number 6 now since oct last year. I have it for abx, and fliuds, so I have to have one, they are talking about a port, but I worry about one, and with a pacer, I worry about infection. In Jan. I got sepsis and ended up in the hospital for 8 days.
I am to the point where I question if its worth fighting the lymes. I feel like the meds are making me so sicker, that I would have a life if I was not on them. (But I know having Late stage lymes I need to be on them) How do you all deal with it? Anyone have any good ideas or supplements that could help with energy?
Thanks for all the support!
[ 06. May 2007, 04:01 AM: Message edited by: LookingforHope ]
Posted by Tincup (Member # 5829) on :
Hey there Good Looking..
WOW! You ARE a mess!
My goodness! If I were in your shoes.. the ones you don't wear much now... I would be a bit depressed too.
And that is an understatement!
I am trying to think of something to say that would make your situation better... or make you feel better... but the whole thing stinks so much I don't know where to start!!!
Ok.. how is this for a deal? It is VERY late.. and I wouldn't count on many folks being up and wandering around in this General Section tonight.
I am going to move your post (a link) over to the Medical Section so hopefully the early crew can come in and make some comments.
Let me know though... Have you tried oral antibiotics before?
Also... Are you treating yeast?
Any details you can share MAY help others with suggestions.
I WILL say though... MANY of us have been where you are right now. It sucks.. no doubt. BUT.. it can get better!
We've had to hang on till it got better... thinking the whole time it NEVER would.. but it eventually did.
One day.. and it shouldn't be much longer.. you WILL have a glimmer of hope because you WILL have a good day.
Then be warned.. the next day you will be just as bad or worse than ever. And maybe the nest few days it will be rough.
THAT is the worst of the worst.. and is SO depressing.
You will suddenly have.. for some unknown reason.. ANOTHER good day!!!
And maybe then another one!
Then a bad day again.
This is a HARD time because you have then "tasted" that good day.. and you will be afraid it will never happen again.
But it will!
Eventually the bad days will become less.. and you will start having more good days each week.
We just need for you to hang in there till you get that first good day. OK?
I will try to get back here soon.. but will leave you with the others who actually will have a refreshed brain that can do some good thinking till then.
So know you aren't alone.. and that we DO care.
Posted by k-lyme (Member # 5574) on :
My god. You poor thing! I am so sorry that you are in such a badly tangled mess of problems right now I've been there......it may not have been as bad as this........but I've been there, and I think I know where to start to help you. We've gotta get you to the point where you can function again.
If you are sleeping 18-20 hours a day, then, most likely, you have a condition called Narcolepsy. The only way to treat this is with medication, and the best one is called Provigil. It had no effect on my issues personally, but I've witnessed a few people with bad fatigue from lyme have remarkable results with it. It is an amazing medicine if it works for you.
As for running to the ER for pain relief, I can relate. I have been there and done that because my pain was so unbearable. I was running to the ER every week at one point because I was on the verge of pulling my hair out the pain was so bad. The problem is, is that, after a while, they will label you in the computer as a drug seeker. Now you and I both know that you are NOT a drug seeker, but they will try to make you out to be one and will give you a really hard time.
INSTEAD of the ER, you need to find a pain management doctor. A neurologist, rheumatologist, and a physician specializing in pain management all fall under this category. These type of doctors will work closely with you to find a medication to relieve your pain. Make sure though that if you go to a nuerologist or a rheumatologist that you specify that you are only coming there for pain management and not for further opinions on your lyme issues or treatment.
I'm glad that you are starting an anti-depressant. You feel like now that you are not there for your son, but you certainly wouldn't be there for your son if the depression drove you to suicide. Good Move.
For now, this is all I can of.
One last thing that I wanted to tell you is that your lack of energy is probably related to your narcolepsy. Start treatment for that, and you should have more energy.
It's late and my brain is about to shut off, so, I will post back tomorrow if I think of anything else.
Take Care, K-lyme
Posted by robi (Member # 5547) on :
I am not familiar with your case so please excuse me if these suggestions are out of line.
Have you seen a practitioner who has a good handle on basic support of the body. This could be a chiropractor, ND, acupuncturist,MD, trained homeopath, etc.
I would suggest a person with a great deal of legitimate training in alternative / complementry medicine . These folks can really suggest high quality supplements and other ways to support the body. Allopathic medicine is so neglectful of this aspect of illness. I am not talking about a multi-vitamin here. I am talking about support for the body at a cellular level with proper supplements in proper amounts.
This can really help your energy. Your body must have this support with all it is going through.
Also, I would suggest acupuncture for pain. Weekly visits............... it is a process of balancing and maintaining balance in the body. You don't just go a couple of times and get fixed.
I am sorry to hear of your pain. I too am there with you at times. The above has helped me and I thought I would pass that along.
Posted by kam (Member # 3410) on :
Looking for Hope...
Hope is on the way. Hang in there.
Thanks for posting here.
Please keep us posted.
Posted by lymemomtooo (Member # 5396) on :
looking, I am not a Dr so have no professional advise to give. But my daughter goes thru this Hell daily and had a picc with rocephin and doxy.
First one did not have a lock and fell out, second time around after a few months, she developed a blood clot and infection.
I think the picc line meds did the best job at killing the spirocetes but she has psychiatric manifestations of undiagnosed and misdiagnosed LD,and her herxs have contributed to many suicide attempts...So while it was killing bugs, it almost killed her in a few ways.
I think you really need to talk all of this over with your dr and I am sorry if that has already been posted, I am rushing to finish with some displays for a museum opening.
Make sure you are detoxing..or your neuro toxin load will be very hard to handle.
Also make sure you are not dealing with other monsters, mold, metals, etc.
Good luck, find a good friend that you can talk to and find something to help you thru this. ie--long walks, movies, books, hobbies, etc. YOu do not need extra time to worry..Sleep is probably needed. I know my daughter spent most of her time sleeping.
Also check in on Cobwebs posts about a cautionary tale from the IV Pole or something like that. lymemomtooo
Posted by Katcon (Member # 9812) on :
I have been there too!
3 iv lines. Hospitalized many times because of this disease.
The dispair and hopelessness is such a heavy burden.
Keeping moving forward with treatment don't give up.
Have you tried treated babs, I have noticed improvements with this treatment. The bad days are still bad, but I am having more good days now.
In the past when I was on iv rocephin, I would also get headaches. I really had to force myself to drink water or I would easily feel dehydrated.
Hang in there.
Posted by db (Member # 733) on :
Dear Looking For Hope,
Thank you for writing and sharing all that you did. You are going through more than one person is intended to endure. I know you are hurting both physically and emotionally. You are in the right place and you have my support.
I've been through falling asleep while I drive, in the bathtub (I flooded my bathroom/bedroom 3 times falling asleep in the bathtub.) It just hits me and I'm out of it. I was so scared and ashamed of falling asleep because my family thought I was a bit nutz for going through the Lyme treatment anyway so I proceded in mopping up the water by myself and falling down everywhere in the process because my brain was shorting out and I was almost sleeping through the mopping. It's awful and I'm sorry you are going through all that you are. I did take some medication for it: provigil. It helps when I can barely stay awake. Also the anti depressants help. I have never taken the IV abx only oral. It doesn't matter though. I just know you are going through a lot. I wanted to write and just let you know I'm thinking of you and hoping this day is better than your last.
Posted by tabbytamer (Member # 3159) on :
Looking for Hope,
So sorry you're going through this. But it sounds all too familiar with what many here have gone through during treatment.
Good idea to have your docs checking into your heart, etc. just to be on the safe side.
I was ready to give up on treatment about six weeks ago. I started treatment in 2002 for an infection that started at least 14 years prior to that.
I would start to make progress, then backslide. Try new med, start to feel better, then backslide. Finally I tested positive for Babesia WA-1.
Started Mepron/Zith/Art. Started feeling better around month two. Around month six felt that backslide again. Wanted to give up. Was exhausted beyond exhausted and was blaming the meds.
Told my LLMD just how I was feeling. Was encouraged to try to hang on, maybe change meds at next visit. Then, before my next visit, I had several really great days!
Hadn't had days with energy in sooo long. It gave me hope to keep trying. Now I'm back to the exhuastion, but I have got to believe it will break and I'll have a day or two where I can get something done.
Would love to go back to work. But that is still probably a way off.
Try to hang in there. If your tired, you body is probably telling you that you need that rest. It's tough when you're a mom, though. And I bet you're a great mom, even in this condition.
Please just try to take one moment at a time. Always keep your doctors informed of everything you are going through. Many of us are taking antidepressants to help us through. So don't feel like you're cheating if you need help from them. And vent here as much as you need to. Okay?
Posted by canbravelyme (Member # 9785) on :
I really like the suggestion of making sure you are detoxing, because if you have a high bacterial load, and you're killing 'keets, you are going to have tons of neurotoxins that are -making- you feel much worse.
Coming from someone who didn't detox...
The simplest thing to start with, and hugely effective for many, is to drink a lot of water with lemon. I'm drinking about 2L/day now. I've been building up, but now I drink it religiously because I know it's one of the only things that improves matters. I plan on increasing my water to between 2 1/2- 3 Litres...
The second thing I would do ASAP, is make another appt. with your Lyme doc, and tell him your situation clearly.
Please let us know how things unfold over the next short while...and after.
I say thank goodness for the internet frequently, because it's a great help in finding ourselves to well.
With many blessings,
can bravely me!
P.S. Please post in the medical questions next time, so we see you're here ASAP - Thanks Tincup, for sending us over.
Posted by Cobweb (Member # 10053) on :
The first of many questions I asked my LLMD at my last appointment was-"Will I ever be able to function without Provigil?" The med I take to help keep me awake during the day.
Her answer- "We'll see". In other words, the jury's still out on that one. Time and perseverence will tell. On days when I don't have any afternoon commitments I don't take the afternoon provigil, and let myself sleep.
Posted by k-lyme (Member # 5574) on :
Hello, I'm back again. I came up with a few other ideas that might help. If you are interested in any of these suggestions, PLEASE consult your doctor first. Obviously, I don't know your case as well as your doctor does, and I only want my suggestions to help you and not harm you.
1. If you think that the Rocephin is causing you to have a massive herx, then test that theory. Try not infusing for a couple of days and see what happens. If you feel better, ask your doctor to adjust the dosage of medication that you are giving yourself daily so that you can be functional and still be killing off spirochetes. 2. Pulsing. Pulsing is very effective in killing off the bugs, and is not as hard on the system because you will have a certain number of days where you will not be infusing(ie: ten days on, two weeks off). 3. Vitamin B12 (Methylcobalamin). This comes in sublingual pills or shots. The shots you have to get compounded at a pharmacy and the pills you can get at a health food store. What I found was that with the shots, I got a temperary boost of energy that lasted for 30 minutes or so, and with the sublingual pills, I gradually had more energy over time. 4. Vitamin D. A massive percentage of people sick with this disease have a severe vitamin D deficiency, and don't know it. This deficiency also contributes to severe fatigue, severe pain, etc, etc.
This is a start. Good Luck to you and I hope you start feeling better soon!
Take Care, K-lyme
Posted by LookingforHope (Member # 9680) on :
Thank you all for all your post. It nice to have so many ideas, and support. I called my LLMD yestersay, and am waiting to hear back from the doctor and all the problems and possablity of trying provigl (sp?). I can't get an appointment till august. Too busy. (It's kind of sad that, that many people have Lymes) I will let you all know what I find out!
Thanks for the support!
Thanks for all the info, you are right too about the vit. D, I found out last month from a blood test the LLMD order that my vit d was 9. he want mine to be 45-65. I was like wow, so I am taking 4000 unit a day, I am to be re-test later this month to see if it is up. I am hoping it is.
Posted by CaliforniaLyme (Member # 7136) on :
HEY!!! THAT IS HOW I HERXED ON ROCPEHIN!!!!!!
SLEEPING 18-22 hours a day!!!
THAT IS HOW I HERXED!!!!!
Then month 7 I began to get better and better and no more sleeping and no more fatigue and less pain every day until it was gone!!!!!!!!!!
I have met a couple of Lymies along the way who also had sleeping Herxes with RocephiN!!! Don't go off of it-!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The only people I met like that were like me- REALLY sick- and both got VERY well!!!!!!!!!!!!
VERY happy to read your post because there aren't that many sleepers out there*)*!)*!)!
It was AMAZING!!! I felt DRUGGED!!! I could NOT stay AWAKE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It was incredible!!!!! SLEPT MONTHS AWAY!!!!!!!!!!!!!!
Was very down, depressed.
Didn't think it was working-
Month 7 my left hand, this little centimeter by dime size spot DID NOT HURT one day! I was like, "Wow, that tiny section of my hand DOES NOT HURT!" It was exciting which shows you how bad I was. I thought maybe it was just tired nerves or maybe I had gone numb there- but the next day- most of that hand was NOT IN AGONY! and it was less swollen- and I COULD MOVE MY HAND more than I had in MONTHS!
I slept for 6 months.
Month 7-9 on Rocephin every day I got my body back!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Now I am running the stairs again and have for years- can run adn play and do whatever I want- because I didn't give up on IV Rocephin!!!
I slept too!!! You are not alone!!! Bestest wishes, Sarah
Posted by lymex5&counting (Member # 7202) on :
I read your post and am so sorry for everything you are going thru. Although I have a screaming lymie kid right now and didn't read the replies.
But the things that came to my mind.
Underactive thyroid. The first time they gave me thyroid medicine I did more in 3 days than I had done in 3 years.
Babesia!!!! I started Malarone a few weeks ago and alot of my fatigue is gone.
I have been on 2 grams Rocephin in the AM and 2 grams in the PM. 4 days on 3 days off. Are you pulsing so you get a break.
Are you on Actigall for your gallbladder?
I had horrible headaches at first. It was my first major herx. Xanax really helped get thru that.
My friend that has a port has to infuse sooooo slowly or her lungs and chest fill up. So I would stick to a picc if you can. Especially since you are doing extra saline.
Do you get the heart issues if you slow down your infusion?
Preservative free Methylcobalamine injected IM daily at 25mg per 1cc, can help with fatigue.
And also are you detoxing? You need to get rid of all the toxins the killing of the Spirochete is giving off. Either with CSM and Actos. Welchol, Chlorella, etc. Binding agents to remove neurotoxins.
They probably need to check your hormones too.
Have you looked at Heavy Metal Poisoning, etc?
Just a few suggestions. Hope something I said helps.
Lyme x 9
Posted by HaplyCarlessdave (Member # 413) on :
I also would recommend considering bringing in some "herbal" elements.
Presumably, the IV doxy, though it was hard on you, was hard on the lyme as well! The ceftriaxone, though it's an old standby for lyme, has its issues, too; most notably that it's hard on your gall bladder. There's a supplement called 'actigall' (I'm not sure what's in it) that may help. Milk thistle may help, too.
Sauna, whirlpool, or just long hot baths may help, too.
Some supplemental vitamins are probably good to take, too. My doc had me take "B50" caps,
Gingko biloba was very helpful for a number of things, including pain and spaciness. Lyme Sucks. I hope things look up for you soon!
Posted by LookingforHope (Member # 9680) on :
I wanted to let you all know I am hanging in. I am still sleeping alot.But I am still having a hard also with the joint pain. I am startung Phyiscal Therapy (sp?) on Wed. I am hoping that will help some. Today I had a echo, and stress test at the cadrio, so I am hoping everything will come back good on that. So I thought I would give an update. And thank you all for the support!
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