posted
For those of you with serious cognitive problems (memory loss, no concentration, slowed thinking process) did oral antibiotics work for you?
Or did you have to go on IV antibiotics?
If so, how long were you on IV until your neuro-lyme/cognitive problems went away?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I had cognitive issues, although not nearly as bad as some. I"m still in treatment but have only done oral abx. My neuro issues are mainly gone today!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Oral abx did a lot for my cognitive problems, but after I went on IV Rocephin they cleared up completely.
I was on IV for three months, but noticed the improvement within a couple of weeks.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
i think that orals can work as good as IVs in your brain.. you just have to find out which dosage u need to get enough high blood levels. i was 14 months on several oral ABx and they helped all.. but my psych stuff etc starting to disappear with mepron/zith/arte
Posts: 371 | From velocity of light | Registered: Sep 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Orals. I had my first break when I treated bartonella and parasites at the same time (so I don't know which did the trick). We were discussing that I would be getting IV if this treatment didn't work.
I am well today.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Orals did nothing for me. 4 months of IV rocefin and flagyl plus lots of orals. Most of it cleared after that.
I also have every co-infection so my treatment has taken me years. I'm on year 3 and I have a hickman catheter now. All cognitive sypmtoms have gone and I think I'm almost there.
Good luck!
Posts: 298 | From usa | Registered: Aug 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm all neuro symptoms. Resolved with a few months of oral Mino/Mepron/Malarone/Tindamax.
posted
99% of my symptoms were neuro/psych -- i've been on orals since february. was nearly 90% better, then started treating the babesia and have slid back a bit, but the fog is slowly lifting.
Posts: 6 | From CT | Registered: Jul 2010
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posted
I have major neuro problems, including speech and swallowing difficulty. Oral abx have not usually worked for me.
A few years ago I was hospitalized for septicemia and given IV vancomycin and naphcillin daily for 6 weeks. Everyone was so surprised that I was so much better after many years being totally bedridden and thoroughly confused. My husband said that I kept asking people what "9/11" meant. No one thought to test for lyme.
I gradually relapsed, my slow speech returned along with major cognitive dysfunction. I was finally tested last year and have been having success with Bicillin shots twice a week and 1000 mg daily of oral Biaxin.
My speech was the first symptom to improve...at least it was quite noticeable. I see a top notch LLMD and he advises slow and steady meds over a longer period of time...at least a year and maybe longer. We are trying to avoid IV abx because of the risk of infection and the difficulty of getting the meds. But I will go with it if it becomes necessary.
These neuro symptoms are hell...it is like someone reaching down your throat and pulling your whole self out and leaving you with only a shell. I live one day at a time, love my family to pieces and thank God for my LLMD!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Wow Farraday. I like that description. Like someone is pulling your whole self out. That is exactly what it feels like. I keep telling my doc. No it's not brain fog "it's worse."
I have done both oral and IV. They both can be effective. I think Mepron has been the most helpful for my brain stuff but it comes back when I go off of the medicine.
Posts: 2232 | From USA | Registered: Aug 2009
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lymeboy
Unregistered
posted
I had a Rocephin IV for 3 months. I was taking some supps, but at the time of my IV, I was not under the care of a LLMD, rather an ID doc who was a bit better than most. The IV did not do much for me. Perhaps it was because of the lack of a cyst buster, or ANY other co med. I had some odd symptoms, and I definitely felt some really strong neuro herxes, but after almost 12 weeks, my balance was still off, and I was still depressed, confused, and out of it.
IM Bicillin seems to have been the strongest thing I've had yet. I'm about to change to a new protocol, as per my LLMD.
Many people have said great things about an IV, and I would be willing to try it again, with a cyst buster. But a Rocephin IV alone did not do much for me.
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Antivirals have also helped me significantly. Valcyte, acyclovir and oxymatrine (a chinese herb for battling enterovirus).
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I think if ab do not work, then you have to go on detox (Cf neurotoxins and cognitve impairement...)
Posts: 723 | From Montreal | Registered: Oct 2010
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