posted
It's been so nice reading all of your uplifting recovery stories. Thanks for them! However, I write today to try to get some answers from anyone who knows anything.
About five weeks ago my LLMD put me on BIaxin. I got REALLY REALLY sick. Every bone in my body hurt, I was sick beyond belief. I would have gone to the hospital except I've learned all they do is pump me full of dilaudid and iv medications and then send me home where I go back to where I started.
I was diagnosed after having lyme disease in my brain and spine mostly for two and a half years. Now they have me on another antibiotic and are talking about IV Rocefin. Anybody have any advice?
I know that my kind of lyme disease hides in my brain when the antibiotics are in my system, but the herx lasted three weeks, and I'm barely recovering right now. I am so weak and can barely get out of bed.
The good news is I have a great support network with my family. My four year old is great, always rubbing my back and smiling only like a child can, my husband helps out with everything and my parents live next door and help out amazingly.
The problem I am really facing right now is that I cannot stand to be in my own skin right now. I'm litterally bouncing off the walls.
If anybody has any advice, please let me know. I'm going to a Dr. in Pittsburgh in three weeks who is supposed to be really good. We'll see if he can help.
Any idea how long it takes until I'll start feeling somewhat like a human being again?
Sorry for the negativity, but I really would like some advice from those of you who are there or have been there. I should say here!
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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bettyg
Unregistered
posted
Jenn,
Please edit your post and remove the Drs. LAST name from your post. The webmaster put out a strict rule about this since this is a public board.
Have you gone to TREEPATROL'S NEWBIE LINKS found on the 1st screen of medical? Print off the links, check them off as you read them as there are 4-6 months of reading there.
Chose what is important to you right NOW.
Print off Dr. B's guidelines....our chronic lymie dr.; believe it's 40 pages now updated 9-05!
It's a LONG journey; I've been on meds now for 17 months and see now progress but was undx for 34 years until 7-04!
posted
Hi schnuddelka [Jenn], I want to help. Yes, the pain is very real.
I don't much about Lyme still, because I didn't know it had it for so long. But LymeNet is a good place, a safe place, to let negativity out, and to get support. You sound surprisingly positive to me.
I'm not sure exactly what you mean about not being able to "stand to be in my [your] skin right now." But I have felt like a tiger in a cage with barely room to pace, with the real ``ME'' so trapped inside. As far as skin senstations go, sometimes I've had the sensation of being flayed, like when you skin a piece of chicken. Other times it's like everything that touches my skin is made of sandpaper. Then there's the feeling of being slowly electrocuted. Sometimes all these at once, not to mention the dizziness and the muscle and joint pain, and the brain-fog, and exhaustion...
It's horrible when your body becomes a torture chamber and there's no viable way out. It's been a long journey for me, too. I was only diagnosed with Lyme a year a go, and have been on two regimen's of high-dose oral antibiotics thus far. When I went downhill again after being on one set for 8 months, my doctor switched me.
The antibiotics have helped me the most by giving me back my ability to think clearly, or greatly improving it. This is, to me, remarkable, because being undiagnosed for 23 years, I spiraled downhill for the past eleven, living mostly in bed, while trying to raise teenagers! I couldn't read anymore, listen to music anymore, converse any more, bring an image to my brain anymore, get refreshing sleep anymore, bear light, sound, vibrations, motion, or touch. My memory was gone. My smile, once so ready and cheerful, was now a grimace. I know this all sounds ``stress related'' but it wasn't. I knew there was causative agent, however illusive. In addition to the pain, I lost nearly all of my physical and ``mental'' abilities, those connected with brain function. There is loss and grief. Due to extreme fatigue, my brain was often a sea of black-fog with room for one work only, HOPE. I've found that there IS light at the end of the tunnel, though you can't see it, and have no idea how long the tunnel may be. DON'T GIVE UP. NEVER, ever, give up. The pain, and suffering has been great, more than I thought I could bear, yet I have. And now I can think again.
Mine is not a "recovery" story, though it could turn out to be...eventually. If it takes until I'm 80, I won't know the difference! But however long, or short, your journey, I think you have to believe in yourself as much as in medical help.
I hope someone who has experience with the medications you're on will post here, because I don't know anything about them. But I do know about having your family patient and loving. I'm glad your family is close. My husband has by now taken over nearly every chore (I don't tell him of all the ones that go undone that I used to do, but can't now.) There's a lot of letting go. One must have support. And a firm personal religious faith is, I have found, of prime importance to making it through.
On a more practical note: One thing I learned from my CFS/FM doctor, who still doesn't think I have Lyme , despite my marked improvement on antibiotics from when she first saw me, is to drink a lot of water and get more salt; to essentially give your self the fluids you'd get in an I.V. You drink 1/2 teaspoon salt per quart of water within 15 minutes, 2 to 3 times a day. I hope you get someone else to verify this for you, or warn you against it. You modify it by feeling what it does to your body; I do it two times a day. (You have to be cautious.) A neurologist, who thought I had M.S. told me to take 400-800 mg. vitamin E a day, counting what you get in any multi-vitamins plus capsules of E. This helped me some too. Malic acid helped me with leg cramps. M.D.'s are the ones who recommended these and the saline drink. So that was a surprise!
Hope any of that helps. I'm here with you too.
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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posted
Thanks for the advice. I know the pacing in a cage feeling. I'm on a multivitamin, an antibiotic and a sleeping aid. That's it right now. I drink two liters of lemonade or gatorade a day, and that helps with the muscle cramps. The bone pain, though, especially in my back becomes unbearable. I have lyme encephalitis (sp?) which means it's in my brain and nervous system, like many I'm sure.
I actually have two nerve stimulator implants. One on my occipital nerves in the back of my head and one on my trygeminal nerves in my forehead and cheeks. These send electrical impulses to my nerves which screw up the pain message to the brain. Before those surgeries, I was litterally 10/10 every day, unable to eat, drink, wasting away and nobody knew why.
Some said it was in my head, others said I had a tumor, and others just threw up their hands and told me not to come back because I was way beyond their help. I was on oxycontin and dilaudid shots to the point where I was practically a vegetable.
The good news now, no more narcotics, hopefully ever again. That's a slippery slope I'd rather not go down again.
Anyway, all this babbling. I thank you for your comments and will continue to pray that God hold me tighter so that I can make it through this!
God bless, Jenn a.k.a. Schnuddelka
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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lyme_suz
Unregistered
posted
Jenn,
Our lyme dr. tells us take a few days off the antibiotic if we get that miserable.
We also take 5days, then 2days off. This is helpful physically, but especially emotionally as you can enjoy non-pain for a while and get refreshed.
quote:Originally posted by schnuddelka: It's been so nice reading all of your uplifting recovery stories. Thanks for them! However, I write today to try to get some answers from anyone who knows anything.
About five weeks ago my LLMD put me on BIaxin. I got REALLY REALLY sick. Every bone in my body hurt, I was sick beyond belief. I would have gone to the hospital except I've learned all they do is pump me full of dilaudid and iv medications and then send me home where I go back to where I started.
I was diagnosed after having lyme disease in my brain and spine mostly for two and a half years. Now they have me on another antibiotic and are talking about IV Rocefin. Anybody have any advice?
I know that my kind of lyme disease hides in my brain when the antibiotics are in my system, but the herx lasted three weeks, and I'm barely recovering right now. I am so weak and can barely get out of bed.
The good news is I have a great support network with my family. My four year old is great, always rubbing my back and smiling only like a child can, my husband helps out with everything and my parents live next door and help out amazingly.
The problem I am really facing right now is that I cannot stand to be in my own skin right now. I'm litterally bouncing off the walls.
If anybody has any advice, please let me know. I'm going to a Dr. in Pittsburgh in three weeks who is supposed to be really good. We'll see if he can help.
Any idea how long it takes until I'll start feeling somewhat like a human being again?
Sorry for the negativity, but I really would like some advice from those of you who are there or have been there. I should say here!
posted
Hi: I just posted nothing. Not used to this site yet. But I am from Wisconsin also, and this site has sooooo much it is overwhelming right now. I was just steered to this site by a gal in Iowa when I was down there last week. I believe I too have Lyme Disease, though have not had the money to get it properly diagnosed. My family doctor gave me Cypro back in 1999 when I first had trouble with the tendons so painful in the backs of my knees. BUT he only put me on it for 24 days, one a day, and now the past year or two had been terrible again, and actually much worse as I have gone from age 64 to 94 in just a few months. I am on social security, and don't have the money I read on another post that people are spending to see a LLMD. I have an illeostomy and can barely scrape together the money I need for those supplies, plus trying to pay some bills and food and heat, car expense, etc., each month. $550 doesn't go far these days as I am sure you know. My wife of 4 years helps out tremendously as she is still working, but is also retireing in January. We have NO insurance, and I am not eligible for medicare yet, so have been just trying to tough it out. My family doctor gave me samples in the beginning, but he doesn't even seem to acknowledge that I have Lyme now, even though he was the one who said IF I felt much better back in '99 after 7 days of the Cypro that it most likely was Lyme. AND I definitley felt many times better at the time. I had gotten bit about 6 months earlier, before I went in to him. I couldn't even get off this chair by the computer before I did. Is there only ONE doctor in Wisconsin that is what you all call a LLMD? IS there a program here in Wisconsin that would pay for a real testing to see IF it is Lyme for sure? Thanks, Jim ###
quote:Originally posted by schnuddelka: It's been so nice reading all of your uplifting recovery stories. Thanks for them! However, I write today to try to get some answers from anyone who knows anything.
About five weeks ago my LLMD put me on BIaxin. I got REALLY REALLY sick. Every bone in my body hurt, I was sick beyond belief. I would have gone to the hospital except I've learned all they do is pump me full of dilaudid and iv medications and then send me home where I go back to where I started.
I was diagnosed after having lyme disease in my brain and spine mostly for two and a half years. Now they have me on another antibiotic and are talking about IV Rocefin. Anybody have any advice?
I know that my kind of lyme disease hides in my brain when the antibiotics are in my system, but the herx lasted three weeks, and I'm barely recovering right now. I am so weak and can barely get out of bed.
The good news is I have a great support network with my family. My four year old is great, always rubbing my back and smiling only like a child can, my husband helps out with everything and my parents live next door and help out amazingly.
The problem I am really facing right now is that I cannot stand to be in my own skin right now. I'm litterally bouncing off the walls.
If anybody has any advice, please let me know. I'm going to a Dr. in Pittsburgh in three weeks who is supposed to be really good. We'll see if he can help.
Any idea how long it takes until I'll start feeling somewhat like a human being again?
Sorry for the negativity, but I really would like some advice from those of you who are there or have been there. I should say here!
You might see if you doctor will try something you suggest. Find an LLMD (Lyme-Literate M.D.) if you can, or at least an open-minded M.D. Mine turned out to be a Family Practicioner, Dr. P. He sent blood work with a history to http://www.igenex.com/ in California. I'd been diagnosed with CFS/CFIDS/FM a couple of year before (after an 11-ear downward spiral) but he knows Lyme. The test came back positive by Igenex standards, though not by the CDC's. Dr. P. put me on Amoxicillin 500mg 3x day, working up over several weeks to 1000mg 3x day, then as I adjusted to that, he added Probenicid 500mg at night to keep the amox. in my blood stream all night. I've been ill for so many years I need a calculator! But within three weeks, I could think again, and had 6 months of getting better. I'm in a slump again, so he switched my anibiotic (the Probenecid isn't good for your teeth over time, so I chew Spry gum with Xylitol made in Provo, UT, I think, that kills tooth-decay bacteria).
This regimen (with insurance we pay $10 only for generic amox. and probenecid) might be affordable and worth the trial. Getting the Igenex blood test, for IgG and IgM (I think those are the ones) would give your M.D. "ground to stand on" and costs $180 total (ins didn't pay). On the other hand, the Lyme bacteria is a spirochete, and there are lots of those types of relatively unknown bugs around. They are hardy, and hide, so even without the Igenex test, an MD might be willing to give the highdose antibiotics a try for a couple of months and see what happens. Ask.
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Jim,
Check your PM's, there's more than one doc who'll treat lyme in WI. For free meds, go to the following sites.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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Due to extreme fatigue, my brain was often a sea of black-fog with room for one work only, HOPE. I've found that there IS light at the end of the tunnel, though you can't see it, and have no idea how long the tunnel may be. DON'T GIVE UP. NEVER, ever, give up. The pain, and suffering has been great, more than I thought I could bear, yet I have. And now I can think again. ![[lol]](graemlins/lol.gif)
But however long, or short, your journey, I think you have to believe in yourself as much as in medical help. ![[loco]](graemlins/loco.gif)
, despite my marked improvement on antibiotics from when she first saw me, is to drink a lot of water and get more salt; to essentially give your self the fluids you'd get in an I.V. You drink 1/2 teaspoon salt per quart of water within 15 minutes, 2 to 3 times a day. I hope you get someone else to verify this for you, or warn you against it. You modify it by feeling what it does to your body; I do it two times a day. (You have to be cautious.) A neurologist, who thought I had M.S. told me to take 400-800 mg. vitamin E a day, counting what you get in any multi-vitamins plus capsules of E. This helped me some too. Malic acid helped me with leg cramps. M.D.'s are the ones who recommended these and the saline drink. So that was a surprise! 
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