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Hi bigstan! :wave:

Great to hear from you again, even if your feeling low. Sorry to hear how bad it is for you right now.

I know what it feels like to be on medicine for a year or two and not feel better. Hang in there man! It'll get better someday. It will. It doesn't seem like it, but it will.

My hands hurt a bit tonight and I'm not editing this, so I may babble on here and there but I will address your questions. :)

The only rash I had prior to the Lyme and Bartonella diagnoses was a red oval, about 6 inches long and 3 inches wide, on the front on my right shin. It was not a bulls-eye.

It was a tight cluster of little bumps and ITCHY!!!

The itching drove me mad!! I would wear slacks instead of a skirt to work so I could reach under the conference room table and scratch away during meetings. I paid my son $1 to scratch it with a stiff hairbrush - LOL!

The head of the bumps would scratch off but they didn't bleed, they weeped a bit. Even if some of them got scabby from all my scratching, the scabs would fall off the next day after becoming even more itchy.

Once I sat on the edge of my tub and scratched the daylights out of it till it was raw, then I poured rubbing alcohol on it. Ahhh, that felt good ... for about 5 minutes till it started itching again.

The oval never got bigger nor did it change color. After maybe a year or so it went away on it's own.

I could not afford health insurance at the time so I didn't see a doctor for a long time and I dismissed the rash. (STUPID move on my part!!!)

I think my immune was a tough cookie and I was able to fight off that initial infection.

I've heard that a major stress in our lives can lower our immune systems just enough to let the stupid Borrelia bacteria take over. I believe that's what happend to me.

On May 30th, 2004, I had an accident and flipped my truck upside down. I wasn't hurt. I walked away without a scratch.

By December 2004, my hair was falling out, my ears would not pop, my sense of balance was gone with the wind, my vision was going, I gained 90 lbs for no good reason and I was so tired I could barely keep my eyes open after 10 hours.

I began treatment in January 2005. Wow, three a half long years ago. In March 2005 I tested CDC positive for Lyme and negative for all co-infections.

My LLMD would prescribe an abx, or combination of abx, and we'd wait about 3 months to see if anything happened. That first year I tried Ceftin, Omnicef, Biaxin, Ketek, Doxycycline, Tindamax, and a few more.

None of them helped. I got worse.

I started living on my sofa because I could walk to my bedroom. I could not even drag my butt to the kitchen sink to brush my teeth at night. I could not remember much. I had trouble speaking. The bottom of my face went numb.

I had such trouble concentrating! If I was watching TV and someone walked in the room and spoke to me - I understood neither. It was as if my brain could only handle one thread of stimulus. If I got more than one stimulus it felt like two trains crashing in my brain.

I lost touch with my family and friends.

The fatigue was just awful. I would sleep for 12 hours and wake up tired. I was working at home at the time and I used to put the phone and computer volumes on high so I would hear if someone called my name because I used to doze off.

This went on for a little over a whole stinkin' year. Oh God I wanted to give up!

On a hunch, my LLMD prescribed Levaquin as she suspected I had Bartonella. After nine long months on oral Levaquin I felt better!!! Yippee!!

My brain fog went away. I was able to remember things. I could respond if my kids asked me a question. I actually did the dishes and brushed my teeth!

However, during this time I had terrible foot pain. I could not bend my feet when I walked so I adopted a frankenstein-esque shuffle. The foot pain lasted for months. I still get it now and then.

I also broke out in a bulls-eye rash behind my left ankle. Ah ha! I was so happy to see that bulls-eye! It validated the diagnosis.

I've heard that the best treatment is to go after the co-infections first. This was true in my case.

I still take the Levaquin, 500mg per day; no other abx at this time. I Herx regularly. Every few weeks my itchy rash breaks out and I get pain and stiffness, fevers, fatigue, my eyes burn horribly, I still have no balance, I now have thyroid problems, etc.

There is a new Bartonella blood test out there. I apologize, but I don't know the name. I finally tested positive for Bartonella quintana.

The Bartonella spots come and go also. Mine come in two flavors - the "bruises" and the "streaks".

The "streaks" look like someone scratched me with thier fingernail. One or two "streaks" can appear in rows. They're short; maybe an inch long. They fade quickly. I never get them in the same spot twice.

I break out in the "bruises" more often. They look exactly like bruises. They are circular. They have appeared on my thighs, calves, upper arms, lower arms, and neck. They are bluish-purple-reddish. Some are big, as if I walked into a doorknob. Some are small, as if I was hit with a paintball. They fade pretty quickly.

It is a bit scary to wake up and notice a huge "bruise" spot.

I looked at Bartonella photos on the web but they did not match mine exactly. I guess everyone's different.

I try to stay positive. Every spot that appears means that the dumb stupid pooy-head bacteria are dying! I hope they suffer.

I've been under treatment now for three and a half years. I was on IV for nine months (Rocephin and another one that I can't remember). The IV did not help me.

I can barely get to work each day but I force myself to. I come home and crash. My family still doesn't understand how sick I am. I am very alone.

I have thoughts of suicide, I cry a lot and I hate spring and summer because I used to love them and it's no fair that I am sick!!

Sometimes I don't detox. Sometimes I sit with a bottle of wine and my iPod and just cry and cry (a big no-no I know!).

Everyone is different. Everyone has different strains of Lyme or one of the co-infections. Everyone has a different immune system.

I am able to tolerate the Levaquin with no side effects or tendon damage. other cannot.

I did not feel one iota better after nine months of IV. Others do.

I pray that you get relief soon. I hope I didn't bore you. Jeez Louise I didn't mean to write a novel!! :)

Try to hang in there, okay?

Maybe you can be tested for all the co-infections? Maybe you can try some of the drugs for the co-infections and see if they have any affect? Maybe you can try some alternative treatments? Maybe you can embark on a great detox quest?

I was so darned frustrated to be under treatment and to be seeing a great LLMD and still not feel better! It was awful. I wanted to die rather than fight.

But somehow I did fight. Somehow I made it through the worst. I'm still only 40% or 50% there, but I'm better than I was two years ago.

You can make it through. You have to. It stinks. It's no fair. It feels like nothing will help. I know. But we're here. We've been when you're at. We know how desperate and frustrating it is.

I will send good thoughts your way my friend.

Peace and health to you bigstan,
Mickie
:angel:





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