Will try to be brief but hit the high points!
Mid 1999 -- My husband Steve developed Parkinsonian tremor with nausea/vomiting/dry heaves -- Initial diagnosis was chronic gastritis and anxiety/depression -- Tried about 30 meds for GI, neuro and psych symptoms -- Only effective meds were Benadryl at 400 mg daily and oral Ativan at 3 mg
Early 2000 -- Correct diagnosis of heavy metal/mercury toxicity. Also treated for GI parasites. Replaced dental fillings and did chelation with IV DMPS (specific for mercury) and some Bear Garlic, Cilantro and D-penicillamine.
September 2000 -- Mercury test now normal and symptoms 90 percent improved. Fatigue and occasional tremor only symptoms left. Off Benadryl and down to 1/2 mg Ativan.
Christmas 2000 -- Felt like he had the flu and continued to feel run down for next couple of months. GI and neuro symptoms returned as bad as ever.
January - mid February 2001 -- Tried Benadryl and Ativan at previous doses and more frequent chelation treatments (weekly instead of monthly) -- Mercury retested and again normal but neither drugs nor chelation worked this time.
February 14, 2001 -- Left work on long-term disability and have not returned to work. Have never had a rash. Took inventory of raw lumber stacks at Bassett Furniture Co. in Martinsville, VA (near North Carolina / Virginia line) end of September, 2000 -- most likely tick exposure. Lumber is shipped to the plant from all over the US.
April 2001 -- Search for diagnosis is on in earnest. Total of 60 plus physicians seen in 11 different states over next 4 years. Tried probably over 100 different meds for GI, psych and neuro symptoms. Favorite diagnosis was chronic anxiety/depression.
April 2001 -- Chronic gastritis per endoscopy -- entire stomach uniformly red and inflamed
Fall 2001 -- Treated for GI parasites with very strong Nigerian herbal formula -- GI symptoms greatly improved (endoscopy 12/01 much better but still chronic gastritis)-- loss of consciousness episodes began -- later determined to be adrenal fatigue.
November 2001 -- MRI shows 2 or 3 white matter hperintensities -- previous MRI March 2001 only showed 1
June 2002 -- Finally a diagnosis -- Lyme test positive from Bowen. Also positive Babesia slide from Bowen.
Traveled to Kansas to try herbal route -- Borrelogen from Dr Jernigan in Wichita. No antibiotics up to this point. Didn't really know anything about Lyme, but thought herbs would be easier on his stomach which we had worked so hard to heal.
Very bad herx! 1st big mistake was continuing to take herbs even at a reduced dose while herxing so severely -- Symptoms kept getting worse and worse and after 2 months ended up in Kansas University Hospital where he remained unconscious for 15 hours one day. Elevated protein found during spinal tap but hospital doctors did not believe Lyme diagnosis.
Also had a positive Lyme PCR from Igenex and a positive recombinant antigen Lyme test from MDL before hospitalization.
Seizure-like episodes and myoclonus and sensitivities to noise and light began during this time frame. Some EEG's abnormal -- some mild slowing in left frontal lobe -- but not epilepsy.
September 2002 - late November 2002 -- Left hospital and traveled to Indianapolis, IN. to work with ACAM physician.
Daily nutritional IV's plus many hydrogen peroxide IV's, 12 blood ozone treatments, and 2 UVB light treatments.
Slight improvement in GI and neuro symtoms. Psych symptoms much improved with amino acids. Loss of consciousness symptoms much improved with very low dose Cortef (5 mg daily) and Florinef (an antidiuretic) -- both for adrenal support.
October 2002 -- Installed PICC line. Have had PICC line in continuously since this date - replacing as needed
Late November 2002 -- Stopped nutritional IV's and started first antibiotic -- 50 mg IV Rocephin. Worked up to 125 mg 3 times a week. Tried one IPT (Insulin Potentiation Therapy) treatment with 125 mg IV Rocephin. 2nd big mistake.
Symptoms kept getting worse and worse for one week -- finally transported to hospital from Dr's IV room when he passed out and could not be revived. Once again hospital Drs did not believe Lyme diagnosis -- their diagnosis was pseudo-seizures.
New symptoms from this time forward were severe sleep apnea and a cough.
December 2002 -- Started using IV Ativan daily PRN to stop severe shaking/seizure-like episodes. This still continues.
December 2002 -- Started using IV push Glutathione at home -- This continues. Generally 500 - 1000 mg daily.
January 2003 - October 2003 -- Tried very small doses of oral Ceftin and Doxycycline for several 1 - 2 week periods. Some slight improvement in neuro symptoms.
February 2003 -- Chest CT showed bilateral hilar adenopathy -- Histoplasmosis test negative. Retested every 6 months with some additional nodules detected over time but etiology unknown.
April 2003 -- 2nd positive recombinant antigen test for Lyme from MDL
August 2003 -- MRI now shows "several" white matter hyperintensities including 1 in a new area of brain plus mild brain atrophy -- (shrinkage)
August 2003 -- Began IV Vitamin C drips at home - 25 grams 1 or 2 times weekly. This continues
October 2003 -- Appt with Dr K in Connecticut (Lyme neurologist) -- Diagnosed Lyme and prescribed 2 months of IV Rocephin at 2000 mg daily.
Mid November 2003 - mid February 2004 -- Completed 120 grams of IV Rocephin. 1st real improvement -- neuro symptoms improved at least 50 percent but had only one really good week before starting to backslide.
Mid February - mid March 2004 -- Tried Placquenil and Zithromax for a couple of weeks but insurance would not approve high dose Zithromax. Switched to Biaxin and Placquenil for a couple more weeks but could not tolerate GI side effects.
Elevated blood ammonia detected after IV Rocephin treatment (symptoms of hepatic encephalopathy -- mostly confusion and gait ataxia -- from time to time until Levaquin resolved this issue).
May 2004 -- Appt with Dr B on Long Island -- Plan was to treat Bartonella (diagnosed on a clinical basis) for 1 month with Levaquin.
This was done in June. Next step was to use Mepron for Babesia (treated based on positive Bowen test from June of 2002)
June 2004 - late May 2005 -- Took artemesinin for Babs.
June 2004 -- Began IV magnesium drips at home based on reco from Dr B. This continues. Various amounts 1 or 2 times weekly -- usually 2 - 3 grams 1 time per week.
July 2004 -- After 10 days on Mepron and Zithromax broke out in a full body red rash and had fluid retention of 10 pounds. Dr B relied on diagnosis of medication allergy made by primary care physician. Stopped Mepron but continued Zithromax at low dose.
August 2004 -- 2nd appt with Dr B on Long Island. Wanted to do 2 additional months of Levaquin for Bartonella based on current medical literature.Did this mid August - mid October but as far as we could tell Levaquin did not do anything positive to improve symptoms.
October 2004 -- 4 hour appt with Dr Patricia Kane -- lots of changes to nutritional supplements. Very very informative!
Mid October - mid December -- Switched to Doxy for Lyme and Lariam for Babesia -- could not tolerate psych side effects of Lariam so stopped it but continued Doxy at low dose.
November 2004 -- Diagnosed with costochondritis (inflammation where ribs connect to the sternum) -- this continues to flare up from time to time
November 2004 - December 2004 -- Did Kane protocol with IV phosphatidyl choline and IV Glutathione. Used total of 75 vials IV choline -- much less than recommendation of 2 - 3 vials 3 times daily 4 or 5 days per week (reco = 24 - 45 vials weekly!) Reco based on fatty acid test. Think this helped some but cost is prohibitive.
December 2004 -- Appt with Dr C in Missouri -- Plan was to treat Babs then Bart then Lyme. 1st tried Flagyl for a couple of weeks -- could only tolerate 1/4 pill due to neuro side effects. Flagyl did stop sweats.
January 2005 -- Within a week of starting Clindamycin developed severe diarrhea which lasted 3 weeks -- stopped meds and of course colonoscopy was normal. By trial and error found that Olive Leaf extract would work to keep GI bacteria in balance.
Late January - late May 2005 -- Clindamycin/quinine/amoxycillin protocol for babs. 1st two months neuro symptoms improved at least 50 percent and cough went away(actually felt even better than improvement on IV Rocephin) but gradual downhill slide during last two months -- sweats started coming back while on this drug combo. Treated for 4 months based on prior recommendation of Dr B that Babs requires 4 -6 months of continuous treatment.
June 2005 -- moved on to Rifampin for Bart. Worst herx since herbs in Kansas. Total of 12 Rifampin pills in 10 days. Waited about a week and switched to Cipro for last 5 days per Dr C.
And that's the short version of Steve's story.
Primary symptoms from beginning of illness to current are:
GI (nausea at least 50 percent of time daily for most of last 4 years/some vomiting/dry heaves during seizure-like episodes),
neuro (tremors/myoclonus/seizure-like episodes/loss of consciousness/freezing up or in my words transient quadriplegia).
Other symptoms which are more variable are light and sound sensitivities and sweats and cough. Steve has not had any significant joint pain or swelling.
In my opinion if Steve were to stop all tick-borne treatment he would end up in a psych ward again within a month or two due to the severe tremors driving him crazy and loss of sleep.
We tried stopping all nutritional supplements once or twice during the last 4 years and seizure-like episodes became more severe and loss of consciousness episodes more frequent.
Cognitive symptoms were much improved initially on Rifampin and moods are as stable as they ever can be given the severity of symptoms. I have to tell him 10 times a day that he will get better if he can just be patient a little longer !
The truth of the matter is that if we could find a LLMD who would be willing to hospitalize Steve and could provide enough symptom relief so he could tolerate full dose meds (preferably IV) I am still confident he can beat this and even make a dramatic recovery.
Or a 2nd alternative would be to prove by tests that he actually has Lyme, Babesia and Bartonella. Steve is still not fully convinced that he doesn't have some other progressive neurological disease such as MS, Parkinson's or ALS. I believe in the tick-borne diagnoses myself because from everything else I have read nothing else comes close to explaining all his symptoms.
The big dilemma is what to treat next -- Babs, Bart or Lyme. And should we consult yet another neurologist or LLMD ???
Thanks in advance to anyone who reads this and has any suggestions.
I had one doctor (not an LLMD) get really mad at me when I told him that with Steve I had learned to question everything! I believe that inquiring minds like those found on this website are what it will take to make some real breakthroughs in diagnosis and treatment of tick-borne diseases.
One of our favorite Dr comments and its actually in writing is "A strange man with a strange presentation." That Dr was so right for so many wrong reasons !!!
[This message has been edited by seibertneurolyme (edited 19 June 2005).]