posted
I miss events, weddings, showers, dinners. I am in pain all the time and so tired. Now I am getting trembling all over with and without anxiety. Twitching muscles are coming in too. I have had it. I went to dr. yesterday and he put me on new regimen listed below. Before, that I was just on Diflucan and Minocycline. I hope it works but now I have to go through another herx. I thought my Bart was done as I had 5 months of Levaquin.
I have had 4 herxes in the last 2 months and having yeast on top of this is hell. I am tired of this, never a break. I go from bed to the couch. Rarely do I go out, if I do, it is a short and close trip. If this doesn't work, LLMD is going to put me on IV picc line of Rocephin. Can anyone tell me how they did on Rocephin??
-------------------- 30 Supplements Awaiting new protocol Diagnosed 2nd time 9/08/2011 with positive western blot No co infection Posts: 74 | From Pine Island, NY | Registered: Sep 2010
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posted
I'm in the same shape as you... just started IV rocephin 3 weeks ago... hurting more, hoping it's helping....
Posts: 120 | From Evansville Indiana | Registered: Dec 2010
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posted
Hang in there. I know this really sucks, but you'll get thru it. The IV abx work better in my opinion anyways. That's the only way I treated. Do you have a good pain management doctor? Pain was my biggest problem before I was healed. When you're in that kind of constant pain, it's hard to even function let alone think straight. If you don't mind, I'll be praying for you. Don't look at herxing as a totally negative thing. Herxing means you're killing the bugs. Many folks treating actually wish they could herx so they knew their treatment was actually doing something.
-------------------- Blessings to you! Posts: 141 | From Southern California | Registered: Mar 2010
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posted
Hang in there it is worth getting through this.Be good to yourself,it takes time.
Posts: 342 | From northern california | Registered: Dec 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Kerry 23: It will get better. I didn't think things would change for my bedridden son. He suffered depression and had major cognitive issues along with every body problem. When he went on IV antibiotics and stayed the course with his other antibiotics, probiotics, vitamins and supplements, things got better faster than they did without IV.
Within 3 months his stomach was working again and the fatigue was less. His relentless nausea ended and the body pain eased up. He had been infected sincer birth and sick for 3 years before a proper diagnosis.
The three of us are with an ILADS doctor. I'm not sure what kind of doctor you see and I'm not sure if you are treating coinfections. When we treated babesia and bartonella things improved.
I would try to stay positive and give the IV Rocephin a chance. Maybe it is just what you need to pass the blood-brain barrier.
You might want to read up on what else you could be doing. I don't know enough to comment on your current treatment.
Best wishes!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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My husband was seriously ill with Lyme and co-infections. There wasn't a part of his body that wasn't in pain. He had pulmonary fibrosis and the muscles in his shoulders and hip area had wasted away. He was ill for a year before he got a Lyme diagnosis and started treatment. A year of oral antibiotics did nothing for him and he continued to spiral downhill. Once he started IV antibiotics his symptoms slowly, slowly started to improve and then go away.
Today, my husband is back at work full-time, he can run again and has energy after work to enjoy his free time. Don't give up. There are better days ahead of you.
Posts: 984 | From San Diego | Registered: Nov 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
You just described me! I went from the bed to the sofa and there I sat all day long; weeks had turned into months and now years. I have 2 young kids that I can no longer care for. So about 7 weeks ago hubby and I decided that the oral meds (12 months plus one month of Bicillin injections) were just not working for me. We decided to go aggressive and found a LLMD who agreed with us. I am going to fight this thing hard and fast or die trying but I refuse to live half dead!
Anyway, 4 weeks 2 days ago I had my Hickman line placed and had all kinds of complications. FINALLY 13 days ago I started my IV Invanz... my LLMD said she did not want me on Rocephin because too many of her patients have lost their gall bladders to Rocephin even though they were on Actigall.
We checked my organs after 8 days on Invanz and my liver enzymes were quite high... so we re-tested today. Yes this is a setback... but we're going to try to do more detox and see if we can bring the levels down.
Now the good news is in 13 days 80% of my pain is GONE!! I'm able to stand up and walk!! I felt so good I that I made 3 breakfasts, 4 lunches and 3 dinners since! Tonight I was cooking and cleaning for 3 hours straight!! Before Invanz I can't walk more than 30 steps before having to sit down due to the pain. So just tonight I cooked, cleaned, swept the floor, cleaned the stove top, the fridge and re-organized my meds. Now that doesn't sound much but to me it's a huge step forward literally. And the fact that I have the DESIRE to do anything is simply amazing!!
Hubby had to say "Now, now just b/c you're feeling good right now doesn't mean you have to over do it". I am sure I'll pay for it tomorrow... but for now let me enjoy a glimpse of my former self.
So what the heck am I saying? I'm saying that while risky, IV have done more for me in 13 days than orals/herbals in more than a year!! Another strange thing while on orals I herxed like crazy but on IV the herxing is soo manageable. So while I am bummed about my liver, I have enlisted a retired Pharmacist who is now a Naturopath to help me detox. Also keep in mind I have the Dreaded Genotype so my body does NOT detox on its own... so my liver problem could just very well be that! I would not hesitate to give Invanz a try!
Please hang in there... I for one think IV for Neurolyme is the way to go. I have brain lesions and peripheral neuropathy and been sick since Nov 2008. Good luck!
Hang in there... we are all in the same boat!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Kerry It does get better. Wading thru all the meds and supplements, changing things up, etc does seem overwhelming especially if you aren't feeling better. I did get a port in January and IV Rocephin has helped. I now can remember having good days once in awhile!
We are here for you!
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am feeling a little overwhelmed myself this morning. Hang in there. We are all in this together.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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