posted
My wife has seronegative neurological Lyme Disease as diagnosed by a LLMD based on her response to Abx therapy.
It's a "diagnosis by exclusion".
She may have had a tick bite in Sept. 2007 on the back of her arm, either in Western NY or Northern CA outside of Sacramento.
It was not a classic rash.
It was a small disc, 0.25" in diameter, with a darker spot in the middle.
The disc looked like a bruise, reddish, much darker than surrounding skin.
I guess you can say we blew it off, which was perhaps the biggest mistake of our lives.
She had many physical symptoms in Oct. 2007:
* Severe headaches * Low grade fever * Blood in urine (like red wine) * Heightened sense of smell and hearing * Anxiety * Paranoia * No energy * Lost control of regular activities * Sinus infection * Sore throat * Nursing son also had dark in urine (asymptomatic so far thank God), possibly bilirubin, RBC death? * Body aches * Joint pain, esp. knees
The onset was very gradual over Sept. and Oct. 2007.
She received Abx for urinary tract infection (due to color of urine), which she tested negative for in early Oct. 2007, and for a sinus infection in late Oct. 2007.
Initial psychotic/paranoid schizophrenic episode starting Oct. 30th and lasting until Nov. 16th, 2007.
During this time, she was admitted to mental hospital where they proceeded to give her Risperdal and Remeron.
She did not recognize who I was for a week.
She was in outpatient therapy for 1 month, still on drugs, got another Psychiatrist involved.
She saw a neurologist. MRI was negative. Possible swelling around retina. Tested negative for Lyme.
They never suspected LD, though I mentioned the physical symptoms often and suggested LD.
She worsened on the meds. Slept 20 hours per day. No improvement.
Switched from Risperdal to Abilify...not much improvement, more side effects. More drugs to treat side effects.
In late Dec. 2007, I began weaning off of all psychotropic drugs. I'm not an MD, but I am a certified analytical-thinkin' Ph.D.!
She appeared to improve a lot, but still had terrible brain fog, zombie appearance, empty stare, no multitasking abilities, no ability to do much at all.
She lost will to live. Attempted suicide by OD in mid Jan., 2008.
I moved the family from CA to NY for help.
We met with a retired infections disease Ph.D., explained symptoms to him, and he thought 100% that it was LD.
He pulled a personal favor to get us into see a LLMD ASAP in April, 2008.
Wife tested "negative" to IGeneX tests, including the "illegal in NY" urine test that we used our CA address for.
Based on symptoms, LLMD prescribed Amoxicillin for 30 days.
Interleaved massive probiotics (NSI 15/35).
Produced Herx response for 30 days, including severe dizziness, hundreds of floaters, joint pain in hands and knees, lethargy. No improvement whatsoever. 10-15% of old self.
Next, prescribed Ceftin in May, 2008.
Literally the next day, she woke and got out of bed in the morning for the first time since Nov. 2007.
Made dramatic improvement during that week, and we enjoyed dinner out 4 days later for the first time in years. 50% of old self.
The blank stare lifted completely. Still had slow reaction, inability to multitask, some brain fog.
Took various Abx related to Ceftin and Biaxin during the summer.
Very small, incremental improvements were observed to about 70% of old self.
Started Doxy, 100 mg/3x per day in Sept. 2008.
Last major improvement followed within 3 days after starting Doxy.
Resumed multitasking, virtual super Mom again.
Appeared to be cured 100%, with some small deficits, though difficult to quantify.
Took off Biaxin in Nov. 2008, no change.
Reduced Doxy by 100 mg in Dec. 2008, no apparent change.
To date, no bacterial infections at all.
Reduced Doxy by another 100 mg on 1/22/09.
Sore throat/sinus infection the next day.
Went to PCP, got Cefprozil.
4 days later, she was readmitted into the mental health hospital again for psychotic behaviors.
The drop was so fast that all of my efforts to get her back on Doxy at 300 mg/day and 500 mg/day of Cefprozil did not help.
Cefprozil was a new Abx for her, and may have accelerated the onset of mental symptoms.
This time around, she is psychotic, and "mixed bipolar".
She's on 400 mg Seroquel, and insurance is forcing the psychiatrist to increase it or else.
She's still on Abx (Dox and Cefprozil)
She did IV Rocephin for 3 days with no improvement.
She may have been Herxing during it though.
Symptoms from 1/23/09 until present:
* Yeast infection * Urinary tract infection (probably b/c she wasn't taking her probiotic correctly) * Sore throat/sinus infection (like before) * She has a pain in the back of her neck and base of head. * Middle back pain * "Scalp is burning." * Heightened sense of hearing * Irritable, anxious, paranoid, bipolar * Angry, mean, violent, suicidal, homicidal * Death thoughts * Constantly tired and closing eyes * Mixed reality and non-reality in conversation * Visibly mentally ill, pretends to sign language when talking, hums with her eyes closed. * No sleep for over a week * Craved cigarettes- never smoked * Some floaters, not as bad as past experience * Very out of it and drugged up * Dizzy when standing up * Neck pain when certain topics are mentioned
Looking back, she was ever so slightly losing control of things around the house in the weeks leading up to her break down, but she fought me whenever I mentioned it.
She has a personality disorder which makes helping her difficult, whether sick or healthy.
She was never convinced of having LD, and she may have not have been taking her Abx.
She admitted to flushing them down toilet in possibly Dec./Jan.
The psychiatrist said he cannot treat LD, but acknowledges that it's potentially a source of the problem.
PCP is useless. Took off IV Rocephin despite orders from LLMD to cover their butts.
Small hospital cannot accommodate medical IV in mental wing.
A "helpful" family member mentioned bipolar disorder family history and lithium, so now psychiatrist has a "diagnosis".
Promised to increase Seroquel a lot.
Her LLMD can't take her as primary care physician.
Her LLMD can't admit her in any hospital.
I'm afraid that she will have permanent brain damage.
She's never had the following Abx: Minocycline Rifampin Flagyl
I need any LLMD anywhere in the US that takes Blue Cross PPO, who can be her primary, and admit her into a hospital for combined medical and mental treatment.
I will do whatever it takes.
I even ordered parts for a Doug coil, and I will build one.
I ordered dozens of herbs and supplements for when she comes home.
I also need to know more about other ways to diagnose LD, like through tissue biopsies.
My wife has been extremely healthy all of her life except for mononucleosis when she was young (~1990) and an appendectomy in 2005.
She's 34, and we have two young boys, 2 and 6.
She holds a BA degree from SUNY, and she has 10 years of experience in social work.
I need help.
Posts: 9 | From NY | Registered: Jan 2009
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posted
Oh dear God, I wish I new how to help you and your entire family.
I don't know of any LLMD who takes any insurance.
I hope that there is someone here who can help you.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Our LLMD takes our insurance, but he cannot take her as a PCP, and he cannot admit her into a hospital.
Posts: 9 | From NY | Registered: Jan 2009
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quote:Originally posted by tcw: Have you checked with the Columbia Lyme research center to see if she may qualify for one of the ongoing research studies there?
We have been in touch with Dr. Fallon, and he only diagnoses neurological LD- he doesn't treat it. His intake person felt that he would not be able to help us much beyond what we already know, especially since she responded to Abx already.
Posts: 9 | From NY | Registered: Jan 2009
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Andrographis tablets (these can be bitter and if that is a problem a capsule might be better for someone who may not want to take this anyway)
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Thank you for this information. If you or anyone needs me to download research papers for them, I have free access to most of them online.
Posts: 9 | From NY | Registered: Jan 2009
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