posted
Hello everyone. I have not posted for several months now. I have been diagnosed and treated since Sept 07. I have now done IV rocephen for 5 months. I have also done mepron/zith along with it for about 2 months. I am positive for ALL coinfections (babesia, the two ehrlichia, mycoplasma, viral titers) except bartonella, which I still suspect I may have.
I am not feeling better but worse it seems. There may be a few things that changed, one is that my ANA became negative, before treatment and IV I had consistent titres of 1:640. I recently received CD57 test results and was surprised to see it was at 200. I certainly don't feel positive changes after all this time on IV.
On mepron, I did notice a decrease in night sweats and sweating in general. But recently, last week or so, it has been kind of hard to breathe like my lungs can't get enough air or I am not breating deep enough. I had not had this before, so am scared.
I still have extreme fatigue and also brain fog seems to be worse. I've gotten incredibly depressed and very often have suicidal thoughts and drive my family insane.
I don't have joint pain, but do have some inflamation in my knees and the inflammation and feeling of fluid I had on the left side of my neck since all this started in March of last year has gotten very much worse. Feels like that whole side is swollen and the swelling may be visible at times if you focus on it. I also have inflamed lymph nodes in there that I can feel.
I am thinking of adding Rifampin to the mix to hit the coinfections and possible bartonella. I have reservations since I am taking mepron and I know it lessens its effectiveness.
But I feel like a rat in a maze and something has to change and maybe hitting potential bart will help. I often can't justify continuing on in this condition anymore- I feel like I am not strong enough.
I think I can bring myself to stop the rocephin after 5 months and admit failure with that. Does anybody have suggestions for what to do instead of it? I am leaning toward another oral abx to replace it... but maybe considering zithromax IV instead of oral?
I just want to hear about your experiences and of course won't take anything as "medical advise" and will continue to consult with the LLMD. Thanks a lot for your time and I wish you all good luck in your battles.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Sorry to hear about your suffering. I think most of us can relate.
After taking abx (orals) for 8 months it seemed to me that abx are not the answer for everyone. I decided to try an herbal protocol. I have been doing it since January & I'm in ever increasing pain. I'm not sure what it is. It could be nerve pain, an injury - I just don't know. I don't think it's a herx, though.
I have begun thinking maybe I should go back to abx but I just don't know. From what you have posted, even IVs aren't the answer, either.
I'm going to talk with my doctor next week. He told me when I first discovered I had Lyme (not fibromyalgia like I thought I had for 9 years) that even IVs don't always work. The spirochetes change form & burrow into places that IV abx can't reach.
From what I've read, IV Rocefin causes the spirochetes to change form to the cyst form. It doesn't kill the cysts. abx may stay in the blood system but they may not be able to reach the nervous system, brain tissue, fluid in the joints, bone marrow, collegen, etc.
So, it's really hard to kill them in whatever form of abx you take. Not to mention the things that the spirochetes become when they detect any chemicals poisonous to them.
Rather then give up hope - try looking into some alternative treatments. There may not be an actual cure for chronic Lyme but I know there are ways to manage it.
There are alternatives.
You never know what tomorrow will bring.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
The "air hunger" is usually attributed to babesia...so make sure you get more meds for that.
You could try zith and artemisinin that would work on Lyme and babs.
Or you could do Bicillin shots and artemisinin....or Bicillin and mepron/zith.
5 months doesn't usually cure long term Lyme and coinfections, so keep plugging away at it.
I hate to hear that you are so depressed. Are you taking something for it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
If your viral titers are high, it could be that you need to treat your viruses now. Since one can't tell the difference by symptoms between a lyme infection (bacterial) and a viral infection, you may just have viral stuff left.
posted
You sound just like me. I did 5 months without seeing very much improvement. My doctor put me on IV vancomycin, which did help me a little bit. Its one tough drug. If you are not seeing any improvement with anything else, you might want to look into Vanco.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Bartonella could be responsible....some of the symptoms you are describing point to this. Bart is a nasty, immunosuppressive, hard to kill bacteria that new research suggests may the reason why many people don't get well. Look for new book coming out by Dr J.S. out of FL.
Tests are poor, so don't rely on them to tell you if you have it.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thank you all so much for your responses and encouragement. I do recognize that bart might exist and would like to treat for it inspite of negative tests. I will likely add rifampin to my regimen.
I will likely stop rocephen soon and that will leave me on mepron/zith and maybe rfampin (I know it lowers mepron efficacy but want to try hitting bart).
I would like to add another oral abx to this. If anyone has suggestions/experiences please chime in. Thank you to all of you who have responded to my post.
My family understands about mepron causing emotional issues so that is good. I am definitely hoping for better days ahead. Thanks.
posted
Thank you all so much for your responses and encouragement. I do recognize that bart might exist and would like to treat for it inspite of negative tests. I will likely add rifampin to my regimen.
I will likely stop rocephen soon and that will leave me on mepron/zith and maybe rfampin (I know it lowers mepron efficacy but want to try hitting bart).
I would like to add another oral abx to this. If anyone has suggestions/experiences please chime in. Thank you to all of you who have responded to my post.
My family understands about mepron causing emotional issues so that is good. I am definitely hoping for better days ahead. Thanks.
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