lymey
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Posts: 4
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Post by lymey on Feb 12, 2006 1:49:01 GMT -5
Hi gang,
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 BC, Oregon, or Baja Mexico 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 moments 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.
Cheers
Todd
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Post by Patti on Feb 12, 2006 12:04:26 GMT -5
Dear Todd, I feel so badly for you and your wife as I truly know what you both are going through. Lyme disease is very complicated and affects each of us differently, but depression is definitely one of the most common symptoms. I think that even if it weren't, we'd still be depressed simply from suffering through this terrible nightmare. I know several people who are seeing Dr. H but I am not sure which coinfections he tests for. I would suggest you insist on your wife being tested for ALL of them, since treating only the Lyme will do no good if there is a coinfection present. I would ask for tests on Babesia, Erlichiosis, Bartonella, and even Mycoplasma infections......if I've missed any of the big ones, I'm sure someone else will volunteer the information. You might also want to read Kerry's post in this section of the board about Why Lyme & Antidepressants Don't Mix.....there is another test that I suggest you ask for, the HPA Profile from Sanesco. It will tell you precisely what is going on in her brain and should Dr. H want to prescribe medication for this, at least he will know the correct type instead of just guessing (as my doctor did). You might want to do some research on Dr. Robert Bransfield, a Psychiatrist who is very well-versed in Lyme disease. Here is a portion of what he writes regarding Lyme and Depression: "The emotional and behavioral symptoms caused by Lyme disease are more complex to understand than the cognitive impairments.................. Autopsies, animal studies, and brain imaging tests have contributed to this understanding. The presenting symptoms of NPLD (NeuroPsychiatric Lyme Disease) are sometimes emotional in nature, and include obsessive-compulsive disorder, depression, and aggression, panic disorder, and other phobic disorders.
In considering the behavioral symptoms, these patients can become suddenly suicidal and there have been completed suicides attributed to Lyme disease............. Dissociative episodes sometimes occur with these patients, occasionally accompanied with aggressive behavior and loss of memory. Compensatory compulsions are common in an effort to compensate for the memory deficits. NPLD can imitate a number of common psychiatric syndromes. It can be difficult to differentiate Lyme disease from rapid cycling Bipolar illness or Posttraumatic Stress Disorder. Eating disorders are common. Invariably these patients either gain or lose weight. Sometimes massive weight gain is also seen."You can read more of his Neuropsychiatric Assessment of Lyme Disease at: www.mentalhealthandillness.com/tnaold.htmlAnother short article on Lyme and Depression can be found here: www.canlyme.com/lyme_depression_suicide.htmlI know that word suicide might scare you but unfortunately it is a part of the disease symptoms, albeit a small one. Your wife sounds like a very strong person and I doubt you have to worry about this with her but it's still good to read up on it. Lastly, I want to say how much I admire you in your attempts to better understand this disease......it's a shame that more spouses and family members of Lyme and/or Morgellons sufferers do not have your same compassion. We wish you all the luck with your March appointment and hope that you will come back and share how this visit went, as well as keeping us updated on your wife's progress. God bless you both! Hugs, Patti
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Post by Administration on Feb 14, 2006 14:58:02 GMT -5
Hi Todd, yes.. This HPA Profile from Sanesco will check the Neurotransmitters and hormones which Lyme seems to attack. The company will also send you a detailed report back of where she is low.. what symptoms it includes.. and what meds are needed. I still get that way too Todd.. like loss of emotional control.. Just severe depression where I cry for days, always suicide is on my mind. Its something I know most have no control over. My HPA Profile came back really bad.. My neurotransmitters are shot.. all except the seritonin which we were surprised at.. and my hormones as well. I am now taking the meds that Sanesco provides.. (which is actually an edocrinology test).. And I feel like I am doing a bit better emotionally. This is a rough ride Todd... I know physically its horrible but mentally I think for me.. even worse. A strange feeling for sure... Literally having no control over your own emotions and the embarrassment of never knowing what is going to set it off and where.. For me.. it seems to come and go and when it hits.. it hits hard.. I cry for about 4 or 5 days.. talk suicide.. then it passes. Then I have control again and am back in business... Very hard I know.. probably just as hard to watch. Then at other times I notice I become irate... very angry... so angry I could spit fire.. Ths disease really messes with the brain badly.. Never dealt with anything like it before.. She is on the right road... seeing a LLMD.. just make sure like Patti says.. No antidepressants without checking her seritonin level..its very important. Just be as supportive as you can.. I wish I knew what else to say... I go thru it myself and when I do.. no one can help me.. it seems as if it has to run its course.. Perhaps she is in herx? All thru my herxes I was this way too.. Im wondering...
If you need us.. feel free to write us personally, or email us on here by clicking on our names. Kerry
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Post by Will on Feb 16, 2006 1:14:20 GMT -5
Hey Todd, sounds like you may be in Oregon. If so we could chat and I could give you some resources and share my process. Been there with the tough neuro symptoms . I remember depression and out of character anger. Difficulty thinking...etc. Well beyond those symptoms now. As a fellow climber and skier I know what it's like to suddenly be incapicitated. I'm back skiing now , thinking clearly , continuing to work toward 100%. I just checked your other postings . Dr Klinghardt(Seattle) is much closer than Dr Harvey. Dr Harvey may have experience with morgellons if that is an issue. Dr Klinghardt is well versed on the neuro aspects of Lyme disease www.neuraltherapy.com/ Search google... Klinghardt Lyme Fascinating well respected man. He's got a waiting list maybe 6 months long . Dr Amy Dirksen interned under Dr Klinghardt and is now privately practising in Seattle. She is much easier to see not having the notoriety and less money too. I think she's well qualified and I place confidence in her. Reading Klinghardts body of work will help you understand their knowledge of the Lyme complex. Best wishes, be well................Will
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guest
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Post by guest on Feb 16, 2006 8:51:35 GMT -5
I think they're discussing a different Dr. H, but still excellent advice Will. Lymie, do you have any updates for us yet?
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