Good weeks vs bad weeks?

Hi Seewhat,

Babesia could have something to do with that. The Babesia might not show up on the test. I know mine never did, but my LLMD treated for it and as soon as that was dealt with, I improved drastically.

You are pretty early into treatment so you are still stirring up some really bad stuff. Keep detoxing and try not to panic even though you are going through some pretty scary stuff.

Many of us here know exactly where you are now and we have come out the other side. It's a rough ride but hold on -- there are better days coming.

Try to get plenty of rest on your bad days, your body is dealing with a lot. Try to remove things that stress you. If possible, retreat from people if you feel you are having a bad day (that way you don't spend energy worrying about your rage or other behavior).

When your brain is racing, find things that calm you. Meditation, yoga, music, mindless TV programs -- whatever works for you.

Do your best to keep yourself calm when you wake up at night with one of those spells. They will pass in time.

Hope you feel better soon.

Seewhat,
Have you called your LLMD to let them know that you are experiencing seizures? They can be dangerous, even if they aren't grand mal seizures.

Well, they definitely need to be aware that you are having seizures!! There are a lot of medications - depending on the severity and frequency of the seizures - that work rather well for most people I believe.

Oh GEEEZZZ!! Lymie moment! LOL!! You can see what I wanted to type, but what I typed to begin with looked like this " that work rather for most people well I believe." LOL! See the word "well" is out of place- and it took me a bit to figure out just what was out of place!!! This is how my little Lymie brain works when I get tired that gives my daughter the giggles! LOL!!

I don't want to be rude, but it sounds to me like maybe you should find a new doctor. I don't like the fact that yours isn't concerned about seizures! In the meantime maybe consult a neurologist?

Have you tested for bartonella? Supposedly the hallmark of bartonella is CNS manifestations out of proportion to the rest of the symptoms...and between the seizures and the feeling like your brain isn't your own...it sounds like a possible cause.

I'm currently waiting to hear back about bartonella results, and based on research I've done I think there's a pretty decent chance that that's what's causing my brain symptoms. I have mini-seizures as I call them on just the right side of my body almost daily, and often wake up in the night paralyzed. I have days where I just don't feel like myself...anxiety, anger, obsessions...that are not at all like me! I know how awful it feels, but it does pass, eventually, usually without any rhyme or reason...

Hi Seewhattimehasdone!
I am so sorry to hear of the issues you are having! Please remember that all tests have a accuracy of only 50%!! So more testing may not be worth the time or money -especially if you have one of the strains that aren't even tested for.

As Borderlyme said, Bartonella should be suspected when CNS issues are out of proportion to other symptoms, and seizures (mild to severe) have been linked to Bartonella infections. I had some minor seizures for a time, I know that they were very scary to me, as they would happen when I drove for more than 2 hours and my LLMD was a 5 hour trip each way!!

None of the infections use the same abx for treatment, as they are each very different. For example, Babesia is a protozoan infection and Lyme is a bacterial infection. Then include the fact that we all respond differently and the need for individual treatment becomes much more clear.

As for seeing a Neurologist, what you would need to do is to find a Lyme literate Neurologist!! There are quite a few of them actually, although I think the majority reside in the Northeastern section of the US. To locate a Lyme literate Neuro, I would suggest that you apply all of the questions that we suggest to ask a LLMD in the thread titled "All members please read - questions to ask LLMD's?"

I would suggest that when you call your LLMD's tomorrow that you suggest that your seizures are connected to Bart and not Lyme Disease - and if they don't respond to your having seizures, then I would again agree with Borderlyme - it's time to find a doc that recognizes that there are real dangers when a patient is having seizures. Having an issue with seizures should light up that doctors demeanor - they should be highly concerned that you are having seizures!!!

Please let us know what the doc has to say!! We are concerned for you!

There are actually quite a few good LLMD's in the West Coast area! I only have a small handful of names that I could share, but I would be willing to if you need them, Seewhat!!

If I remember correctly(and no one should count on that happening LOL!), you have been ill for quite a while, haven't you? If that's the case, then I believe that you need a LLMD that has experience with tough cases, and there are some over there on the West Coast area as well as in the East Coast area!

Since you don't have your email enabled, would you please send me an email? Please be sure that you include your screen name on here, or I won't know who I'm talking with!!! LOL!! Would you please also include where you are looking exactly? It would be best if you would include not only the state where you are wanting to find treatment, but a larger city that you are hoping to be near for treatment?

Thanks!!
Trav

hi ,
i agree with borderlyme, maybe a new dr.i have seen over 75. i walked out of the last dr office in 2002, never to return. i have had lyme for 15 years. on disability since 1998, 2years after i was bitten. i dont like to say what will happen to someone else. i can only tell you about my experience and hope it helps you. since 1996,when i was bitten, i have had good days and bad days. but eventually with alot of work, help from people like the ones on this forum,inspirational books, yoga, mediation, and research, reasearch and more research, good days turn into good weeks and weeks into months and for the first time 2 years ago..good months into good years. the last 8 weeks i am having good hours and bad hours. it took a decade of pain, more doctors i can remember before i accepted the fact that i will most likely share my body with this disease possibly forever. dont get me wrong, the unknowing is scary, but after acceptance, letting go of the hope of returning to who i used to be, deciding to like the new me,i started to heal. i, along with thousands of other lymies fight to live everyday. life with lyme disease is still a good life worth fighting every moment. it will get better, be strong and when you dont feel strong, have a good cry and call a friend. you can get through it! letgo

Thank you for your inspiration! I called the doctor's office and told them the seizures were getting worse and I need some answers. I need to either see a new doc or start treatment for the co-infections that i'm 100 percent sure I have. The seizures, night sweats, trouble breathing, dark urine, etc. all point to that so why won't he treat me!

I don't know if i should be on IV antibiotics. That seems like a better option as I think it would speed up the healing but i'm no doctor.

That's a really good point actually. I will start keeping a journal. I'm sure it will help me. Thanks!

Journaling is an excellent way to track what you're taking at any given time, how you feel, how you're sleeping. Of course, I am a technical guy, so my journal is a spreadsheet. I label my days Green, Yellow, Orange, Red is order of how a feel - red is worst. I keep track of sleep quality - subjective rating of 1-10, my avg body temp measured 3x day at 9:00, 12:00 and 3:00, my supps, my meds, exercise, detox methods used, and then a cell where I just note what I did and I I feel. It helps me track what thing might be causing what reaction and also the things that might be helping....my doc is impressed by it!

LOL L/A! Yeah, I am pretty anal about these things - you shoulld see the spreadsheet I have of my household bills! Records for electricity, gas, every bill paid at least since 2002/2003! Plus, being a runner, I keep every run logged, my time, what the weather was, how I felt, how much I weighted...LOL! I guess you could say I'm a little obsessive complulsive in my personality!