posted
I need to lean on all of you again. I think this is all too hard. I am sitting here sobbing. I just don't know how to keep hope in all of this anymore.
I have been treating for a year and a half. There has been some improvement. However, I have been living with derealizaiton and such memory/cognitive problems for so long that I feel like I have died.
I started levaquin a month ago and all kinds of crazy stuff has been happneing. I feel it immediately after I take the pill. Thank goodness I only take it right now M, W, F. I need to feel like this hell is making it better. Everyone keeps saying to hang in there. Eveyone keeps saying if it is stirring up that much stuff that it is working. I am trying to believe that. I don't have the money for IV so I have to keep trusting my LLMD and the orals.
Today is double whammy - levauqin and flagyl. I just need it to get better. I need a ray of sunshine to hold onto so that I can believe that I will get better.
My birthday is on Tuesday and it is really messing with me that I will celebrate another birthday this sick.
Thanks for listening. Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kathy, flagyl was the most evil abx I took in three years of many different combos and IV treatments. I never got past slivers of flagyl. It put me in a very hopeless, depressed state. No, I would never go back to that state.
Now I'm from the abx isn't for everyone camp. My views are based on my experiences. Abx became my enemy sometime during that 3 yr period.
I was without abx for about 6 yrs and only used rife and heavy duty detox programs and alternative protocols, with improvement in many areas but certainly no "cure" testimony.
I was also tick bitten several times in that period and I believe I picked up a heavy duty dose of bartonella, mycoplasma Pn, viruses from those bites.
I'm using rifampin today for bart. I also tried low dose levaquin last year, with relaspe sx after stopping it. Rifampin has eliminated some sx for me. I'm going to do rifampin for 3 mths and then switch up to only rife for bart.
That's my plan if I can find the right combo of freqs to keep bart in check like rifampin has done.
I completely understand the derealization stuff. I believe it's the bodies way of dealing with all the pain and sickness. It's sad how this illness turns us into someone we don't even recognize anymore.
Hey, your birthday is coming up. You should get to enjoy that day as much as you can. A break from abx with major focus on doing detox and good stuff for your body the next few days? Why not?
I know what my old LLMD would tell a patient feeling so bad.....take an abx holiday. Enjoy your birthday. Only eat one slice of cake and don't drink. Come back to this Wed after your birthday.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
Pam , Thanks for answering. As you know, it helps to know someone out there understands when those around me don't.
I am trying to stay strong, but it is so hard.
Hugs, Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I'm praying for you, Kathy.
I hope you are able to enjoy your birthday and feel the hope that you really need.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Happy Birthday Kathy,A very happy birthday to you!Think this weekend of the one thing you are going to do on Tuesday, that would be a dream cheat.Something to distract yourself, even for a moment, from all you are going through. Make it a good one!
Posts: 261 | From Piedmont | Registered: May 2008
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-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
Thanks. I am on both an anti-depressant and using the dreaded benzos. Took some klonopin earlier to make it through. Solid advice. My diease is so neuro and psychological. It is how I herx primarily. I hope this is one hell of a herx.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
Happy Birthday Kathy! Sorry you are having a hard time. My 12 yr old son gets so sick of all the medications! when it gets really bad I admit I let him "skip it" on occasion, don't know if this is a good idea or not but his mental health is important too. It seems to really help him just to get outside especially on a nice sunny day even if just for a little while so if you are well enough maybe that could help. Carol
Posts: 448 | From minnesota | Registered: Feb 2010
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To be honest, I really don't know if quinolones is to blame or not, but if I started over, I would have skipped the quinolones and gone to Rifampin. Sure, it could be hard on the liver, but the liver is a pretty tough organ. My symptoms after starting the quinolones were very similar to symptoms I already experienced (only much more intense), so I assumed a herx. The panic attacks were completely neuro. The drug triggered them. I was warned about tendon issues, but never knew it could actually make anxiety symptoms worse. I thought this just meant the drug was working. About 1.5 months later I just couldn't tolerate the drug anymore. Not psychologically, but physically. When I took it, I just wanted to vomit.
CNS side effects occur about 1-2% of people, and people on benzodiazepines are more likely to experience CNS side effects. Quinolones can block GABA(A) receptors. When these receptors are blocked, you can develop anxiety or increased anxiety. They also inhibit cytochrome P450. From what I've read, this side effect typically reverses in about a months time, but it can take longer in some people. It can cause intolerance to many drugs, and even extreme intolerance to caffeine. The inhibition can cause a dramatically increased serum concentration of drugs/substances that use these pathways.
Increased anxiety and pain can develop several months after stopping the drug. These side effects typically last 6 months to 5 years, but some never fully recover.
I don't let this information worry me, but while I was stuck in bed doing my EEG, I did some reading. I just wish my doctor told me about this side effect. If 1-2% of people get CNS side effects, that's not very rare in my opinion. And the side effects are not short term side effects.
I'll let you know what my EEG looks like. The anxiety was intense this morning, but it is calming down a bit. Last night, I felt the best I did in months. It could be do to the fact I took every natural/unnatural NSAID and Pain reliever in my cupboard (A big no-no!). I don't have tendon pain, but a lot of GI, head, and muscle pain lately.
Anything mentally or visually stimulating (entertaining or not) seems to trigger my agitation. Riding in a car makes me feel worse as well, but even though I am not well enough to drive, getting out of the house is very important for me.
On a positive note, several months later, my memory and cognition is actually better than before I started any antibiotics. I am not on anything still as I really can't handle much. Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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