I, as always, appreciate your help and support. I appologize as this is a bit long, but I want to be as accurate as possible in order to get the best information. My wife, prior to this incredible illness, was one of the strongest people I knew. She was a climber, kayaker, hiker, mountaineer, runner, amazing teacher, healthy, fit, strong etc. until she became devastatingly ill. She was clinically diagnosed with lyme and she began treatment on July 1, 2005. She was bit either in [u]BC, Oregon, or Baja Mexico[/u] although there was never a sign of a tick bite .
Now, my wife and i are at a crossroads. She has been on antibiotics for 6 months (ketek and tinidazole pretty much) and has, in the past, had some great improvement. However, 6 months in and we have a problem. She has dropped into the pit of mental hell all of a sudden. She has had [u]moments[/u] of 70%, but still totally unable to function in normal society because she never knows when she is going to crash down to 8-10 %. The severe mental issues have become out of control.
During our last visit to the LLMD, he made an appoimtment for us with Dr H in California. We are going there in March and hopefully we will find some answers there, but i am looking for advice on what sort of co-infections we might be looking at. She is mentally out of control. Her crying is like what I envision watching your own children raped and tortured to death would be like and this happens everyday. I don't mean to be so graffic, but that is as close as I can get. Having said that, this is the strongest woman I know. The type of woman that inspires super hero comic books.
She was only misdiagnosed for 14 months, what could we possibly be looking at. She has, as of 3 days ago, dropped the ketec and tinidazole and begun taking Levaquin. Baja, Oregon, BC - any idea what's out there? I have spent the time trying to find out myself, but there is too much B.S. information on the net. People trying to sell a miracle cure. Help if you can. Let me know if you need any sdditional information.
heers
Todd
-------------------- Cheers Posts: 3 | From vancouver, canada | Registered: Oct 2005
| IP: Logged |
I, as always, appreciate your help and support. I appologize as this is a bit long, but I want to be as accurate as possible in order to get the best information. My wife, prior to this incredible illness, was one of the strongest people I knew. She was a climber, kayaker, hiker, mountaineer, runner, amazing teacher, healthy, fit, strong etc. until she became devastatingly ill. She was clinically diagnosed with lyme and she began treatment on July 1, 2005. She was bit either in [u]BC, Oregon, or Baja Mexico[/u] although there was never a sign of a tick bite .
Now, my wife and i are at a crossroads. She has been on antibiotics for 6 months (ketek and tinidazole pretty much) and has, in the past, had some great improvement. However, 6 months in and we have a problem. She has dropped into the pit of mental hell all of a sudden. She has had [u]moments[/u] of 70%, but still totally unable to function in normal society because she never knows when she is going to crash down to 8-10 %. The severe mental issues have become out of control.
During our last visit to the LLMD, he made an appoimtment for us with Dr H in California. We are going there in March and hopefully we will find some answers there, but i am looking for advice on what sort of co-infections we might be looking at. She is mentally out of control. Her crying is like what I envision watching your own children raped and tortured to death would be like and this happens everyday. I don't mean to be so graffic, but that is as close as I can get. Having said that, this is the strongest woman I know. The type of woman that inspires super hero comic books.
She was only misdiagnosed for 14 months, what could we possibly be looking at. She has, as of 3 days ago, dropped the ketec and tinidazole and begun taking Levaquin. Baja, Oregon, BC - any idea what's out there? I have spent the time trying to find out myself, but there is too much B.S. information on the net. People trying to sell a miracle cure. Help if you can. Let me know if you need any sdditional information.
heers
Todd
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
liz28
Unregistered
posted
It's hard to say what's going on in your situation. When I felt out of control, there were two causes: constant systemic inflammation was burning through my spare seratonin (sp?), causing uncharacteristic mood swings, and I had an undiagnosed case of bartonella, a mean little bug that needles people into rageful outbursts.
The drugs I take for inflammation are two prescriptions, Celebrex and provigil, and theanine, a vitamin store supplement. All three have been lifesavers.
There's two drugs that hit bartonella, rifampin w/a macrolide or levaquin. For some strange reason, everybody seems to respond immediately to one and have terrible side effects with the other. For me, bartonella cleared up in five months through a combination of rifampin, ketek, and vinpocetine, another vitamin store supplement that proved useful for flushing out hidden/sequestered bugs in the hard-to-reach neurological system. I tried levaquin, but it was too heavy for longterm use.
A lot of the antibiotic protocols you see discussed here come from Dr. B's treatment guidelines. His current take seems to be this: treat all chronic Lyme patients for co-infections, and hit Lyme itself with a macrolide and a cephalosporin. Ketek is a macrolide, tini is a cystbuster, but there's no cephalosporin in your routine. That's a biggie. Take a look at omnicef, ceftin, or maybe rocephin as part of your Lyme protocol.
Here's Dr. B's latest protocols. They really do pack a wallop--whenever you read on here about this latest protocol not helping someone, it often seems like there's some key ingredient in the recipe the person forgot to include.
I'm so sorry your wife is suffering this, I know that pit of mental hell but my visits have been of shorter duration, not every day.
As well as lyme I tested positive for Chlamydia pneumoniae and this too has been found to cause serious psychological disturbance. Maybe she could have a test for this but the antibiotic protocols to treat it are very similar to those for lyme, eg. doxy + zith + flagyl, because, like borellia, the cpn bacteria have three different life phases, so you can treat these two bacteria with one protocol.
there is a lot of very good info. about Cpn. Most posters on there have MS but there are lymies and CFS folk too.
Posts: 51 | From England | Registered: Oct 2005
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posted
Both bartonella and lyme have been implicated in psychiatric disturbances in patients with tickborne diseases. So, it could be either or both.
Think you need to read some of the previous posts on bartonella (do a search of medical and general support forums) and also there are some good articles on psych disturbances with lyme. Here is one: http://www.canlyme.com/psy.html
Not sure I would want to be quoted on this, but have the impression that sometimes after one TBD is treated and the symptoms lessen, another one that has been undetected and untreated and had been masked, then becomes more apparent. As in Lyme symptoms subside, bartonella now becomes prominent. This would occur when the various germs are being treated with meds that don't work on all of them. Just guessing here. Could be wrong!
The other thing is that testing for co-infections is just as iffy as lyme testing because there are more kinds of babesia and bartonella than there are tests to find them. This is what happened to me with babesia testing. They were looking for the wrong one and it set my treatment back. Sometimes, in these situations the doctor has to go on symptoms rather than testing.
Does your wife have any odd skin discolorations, like "stretch marks?"
[ 12. February 2006, 12:01 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Todd I feel for both of you...I am going thru the same thing with my son and there are times I feel so alone and isolated.
I know how your wife feels about not knowing when she is going to crash...I do very little with my son outside of home now due to the same reason...
He gets aggressive and the last two were whoppers...He is being treated for babesia at the moment and altho he is doing better and is happier, I never know when the shoe will drop....
He is diabled and cannot communicate what is going on with him....
He had such a severe reaction last weekend that I had to stop the car 4 times just for safety....He was psycotic...the best way for me to describe it...then went into fits of crying and he was not visibly shaking but as I tried to hold his hands to comfort him I could feel his insides shaking... He was just so angry....and I was so scared for him..
I called LLMD and he said is was a herx....3 week mark on mepron/zith...It happened again mid week....
I give him detox baths every night for the past month....this seems to make him feel better...I am also using magnesium....
He is very sensitive so many things so it is hard to tell what other things I have tried were helping him or causing more problems...
I am waiting on cholrella as I have heard such wonderful things about this.....
Does your wife take anything for detox?
I know my son has bartonella just on symptoms, but I believe you are supposed to treat babesia first...I may be wrong on this but this is what his LLMD is doing...
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
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posted
Just wanted to let you know that Dr. H is wonderful. You get so much of his time that you should not go away without answers to most of your questions. Also, he has been treating me for 5 months and a friend for approx. 18 months and has helped us both a lot. We each have different co-infections. Good luck. It will get better.
Posts: 3 | From Northern California | Registered: Sep 2005
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posted
OOPS! I should have re-read my message. You should go away with most of your questions answered.
Posts: 3 | From Northern California | Registered: Sep 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Just wondering how long the bart rash lasts. Is it ongoing or temporary?
Andie
Posts: 2549 | From never never land | Registered: May 2005
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bettyg
Unregistered
posted
Heers, here is Cheryl's lyme info site info on co-infections...not sure if you've seen/read it before. Sorry to read about your wife; glad she has you as her strong support during these bad times/years to come.
posted
Todd, I have suffered similar mental/emotional problems with lyme. I was only misdiagnosed for 4 months. It doesn't take very long before lyme becomes chronic. The window from when it is easily treatable to where it becomes such a persistant infection is very narrow.
I was on antibiotics for over a year and frustrated because although my physical symptoms were SLOOOOOWLY improving, my mental/emotional ones were at an almost standstill.
I decided to try a rife machine. I was desparate.
Well, the rife machine helped my mental symptoms like no antibiotic ever has. The effect was immediate and strong.
You must be careful though because the herx can be very strong. I had total memory lapses during the strongest periods.
You can read more about my experiences with it if you search on my username and rife.
I have been on abx for almost two years now and doing very well. I feel as though I will be off abx within a few months.
Feel free to PM me if you have other questions.
- Mike
Posts: 153 | From Watertown, CT USA | Registered: Feb 2004
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