posted
If this has happened to you please respond, I am really bumming [LIST] I have been on orals since Jan 05, graduated to IV for 6 months - had the line pulled May 30th, 06. I have been back on orals and have really regressed. I am totally bumming. Extreme fatigue, easily ****ed off (I think I just get frustrated, because I do not understand everything) word retrieval, focus?? yea right, speech impediment, um um um. Please help. This board has helped me keep my sanity - light at the end of the tunnel. But this is ridiculous, no remission, no herx - just back to the brain tow away zone. Thank god for this board, no one would begin to understand the many torturous paths this disease takes your brain and the utter horror/terror you experience unless they have experienced this disease. I do not want to go there again. Writing out loud
Posts: 61 | From cosmo | Registered: Nov 2004
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi there,
Wow. I am sorry that you are not seeing progress at this point. That is so hard. Just can feel like forever.
How long have you had lyme? I would like to know more specifics on your situation, if you would.
My daughter has just completed 2yrs of treatment, both IV and oral and is finally getting some energy, color in her cheeks and relief from the discouragement and anxiety.
I am doing well after 15mos abx. But my worse symptom is word retrieval and overall DUH!ness. I was not this bad before, so I am taking the view that it is a brain herx and a good sign.
Do you think some of your symptoms could be a herx?
Char, considering where I was, orals helped. I took orals almost for the entire year of 2005, I thought I did well. Looking back I have lost the whole year. I switched insurance companies and it allowed me the opportunity for IV treatment. Everything is better than before I had treatment. But now I am going to extremes to compensate for my inability to keep up, and it usually back fires. My speech is labored and to look someone in the eye when I talk is actually distracting. I need to look away to focus on the conversation. I am regresssing. I just got back from traveling to my LLMD and they admitted I was regressing. They took me off all meds for a month, I have been going steady at it since the line was pulled. I have to ask why I am such a hard nut to crack. Is there any one else here that has had this happen? Any other nuts in the group??? I do not think it is a herx, Char. Do you still have problems with your speech? sx; 2004 I was fine then one day got hungry for air, body went limp and then started convulsing folding up like a hospital bed. This continued for months, my back felt like someone hit it with a baseball bat so I walked like a stroke victim. Then paralysis set in off and on and I slept all the time. Then I was fine, then I was sick....when that stopped I thought I was okay so I went back to work and had no idea how to operate my computer. Any feed back would be appreciated Thanks Teri
Posts: 61 | From cosmo | Registered: Nov 2004
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I'm a tough nut too! But please help me out, when you type please make short paragraphs for me to read, and leave out the moving icon thingys..thanks!
I'm on my third round of iv abx and just started anti seizure meds and things are looking hopeful as we are talking at least two more months of iv's..i'ts been 4months so far this time, and the neurologist says we'll work on getting me seizure free too.
I still have a lot of relearning to do, but hope maybe this will be the year. Now that we are knowing that I am not recovering from seizures thru lyme treatment, maybe I will get off of iv abx. I hope to make my third attempt this fall, and not relapse this winter on orals.
I will be working with an educational psychologist doing neurocognitive rehab after I get the anti seizure meds stable. So that's my plan. For right now. I hope it works, i have been working on it for two years.
I don't know what to tell you but keep trying and keep finding things to laugh abt and do. Keep loving and hoping and reading even whenyou think you can't. get ideas. Even little ones. Ask questions pray and be thankful.
And, keep being a tough nut!
Posts: 663 | From NH USA | Registered: Sep 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
It's a bummer to feel you are regressing-
I too did orals, IV, then orals again, and was very sick when I began long term orals post IV with a new llmd. I felt awful for 10 months.
About 18 months into orals he re-tested me for co-infections including some that were not done the first time, like Rocky MSF and mycoplasma. I was positive for both plus bart.
Apparently the long term orals were addressing cos that the IV just wasn't touching. Perhaps this is the case with you. You might be herxing.
I did- IV-rocephin long term orals- tetra and relatives
followed by 3 months of diflucan alone, when only pulsing currently and have all but eliminated refined carbs from my diet and feel 100%. This is the first time I have felt this good since 1997. I think I had a good case of systemic yeast and didn't realize it. What I thought were continuing symptems of bacterial infection, fatigue and arthritis, could well have been from the yeast infection.
The answer is never obvious. i hope you are feeling better soon.
posted
Thanks for the replies. I will seperate my paragraphs, if I do not, it is because I forgot.
I thought I was over this part and I was just starting to get my self esteem back, confidence and trusting my intution. Now I am missing work again, having to go home because I can not communicate with the public - I have to hide it. I do not trust my feelings one bit. Hopefully I will feel better without meds. Thanks you guys T.
Posts: 61 | From cosmo | Registered: Nov 2004
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