Medical History for Doug 1997-2010
Summary:
From 1997-2007 had an unknown illness. I had a diagnosis in 6/2007 and started treatment for CFS, CPN and EBV. I stopped treatment in 9/2010 when 100% well.
I started this letter in 2005, added to in 2/06 and 5/07. This was prepared for Dr. P of Sacramento for intake when I starting seeing him June, 2007. This is not very complete, but may be of value for someone going through the same thing
No illness prior to 1997
8/ 1997
Exposed to extensive mold in a building interior during renovation work as an Architect
Strachbotrus Chartum and Penicillin mold were found.
I had flue like symptoms for almost two months, including high fever, body aches, sore throat, but recovered.
10/97 Visit again to contaminated building with respirator, no body suit.
Flue symptoms, fatigue, aches, 103 fever, sore throat
A succession of stiffness swelling and pain started in my joints.
First affected was one foot, and then the other was affected two weeks later.
Knees, hips, elbow joints followed in a similar pattern.
Flue type symptoms persisted for about 1 1/2 years, feeling very sick half the time, not 100% well between long periods of illness.
11/97 My primary care physician, Dr. J, ordered lab tests.
1/98 Lump on bottom of left foot appears after gym work out (leg press)
referred to Dr. D (podiatrist) Plantar Faciitus diagnosed.
1/98 Dr. J ordered more lab tests
Flue type symptoms, fatigue persists sporadically.
Joint aches and pains, knuckles became larger. Symptoms include stiff neck, sinus pain, headaches, creeping sensation on scalp, white mouth patch occurs monthly.
9/98 Dr.J ordered more tests. No diagnosis was made. Lymps, Uric Acid, GGT, Cholesterol and triglycerides were high in Jacoby test. Rheumatoid factor was high 44, when range was 26-34. Referred to Dr. C, Rheumatologist.
1/99 Visit and report, tests by Dr. C.
Negative test for Lyme disease. Possible early Sjogrens arthritis was diagnosis. Never had dry mouth or dry eyes. High hepatic test values.
1999 thru 2003 flue type symptoms lessened in frequency, and energy level increased. Overall, joint pain lessons. Foot pain, white mouth patch, fatigue persist off and on. Some symptoms last a couple days or weeks and occur every other month; other symptoms last a couple weeks or months, occur once or twice a year. Some joint pain lasts only a few minutes and occurs several time a day. Then I may have weeks without feeling any pain in that location.
During this time period my abdomen suddenly felt bloated, stools are smaller. Also developed skin redness around neck and chest, and rash on thighs at some point. My right knee became stiff and sore with skiing.
I thought my symptoms were caused by Sjogrens and didn't seek medical help. Developed UTI symptoms, unrelated to 'Sjogrens".
Started taking Glucosamine Chondrotin for joints. This helped reduce joint and ear pressure/pain.
3/2002 Dr. J retires, increase in symptoms prompted finding a new doctor. I started seeing Dr. P, general practitioner.
Ear pressure, sore throat for two weeks; flue type symptoms, sinus pressure, fatigue.
Right knee swollen, hot feeling joint, swollen neck glands, sweating at night.
6/2002 Dr. P tests.
Referred to Dr. F ENT specialist for ear pressure, throat soreness - Dr. F prescribed Flonase. Recommended allergy testing, didn't do
9 thru 11/2002 Symptoms now include urinary drip sensation without discharge. Frequent urination.
Dr. P prescribed short course of antibiotics twice, urinary symptoms are initially reduced, but re-appeared. Dr. P prescribed Grisefluvin for chronic jock itch. I felt good for 2 weeks after taking Grisefluvin, more energy. Jock itch returned.
4/2003 Saw Dr. P for sore throat, lasting one month. Step throat culture negative.
4/2003 Stopped taking Flonase-didn't do anything for ear pressure. Right knee pain increased, couldn't bear weight to walk up stairs.
8/2003 Saw Dr. D (Rheumatologist) for knee pain. Dr. D had x-rays taken, blood tests. X rays found slight bone ossification at patellar tendon. No rheumatoid factor, diagnosed no arthritis. Referred to Dr. B, knee surgeon.
8/2003 Dr. B suspected torn meniscus, didn't perform MRI or culture. Right knee surgery removed loose cartilage from chondral fracture, trochlear groove. Loose and torn cartilage 1" diameter on weight bearing surface of femur removed.
11/2003 New lump on bottom arch of right foot, revisit Dr. D. Both feet hurt random times, waking me out of sound sleep.
12/2003 Obtain MRI-Biopsy recommended. D refers me to Dr. J at UCSF orthopedic oncology. I see Dr. O at this office. He won't operate on foot because of 50% recurrent rate, and I can still walk.
At this point I realize if I don't have early Sjogrens or arthritis, what do I have? First joints swell and ache, then years later cartilage is damaged or lumps appear. I suspect my symptoms are related to one cause, starting with mold exposure. I have an ongoing UTI type problem, sporadic migratory joint pain, flues that last weeks or months; unexplained tiredness, eye and ear pressure, paratoid gland swelling, moth sores. Joint pain is most frequent in hands and feet. I relate my suspicions to my primary care Dr P, who thinks my various symptoms are unrelated, and some symptoms are in my head. I need to find another Dr.
2/2004 visit to UCSF Occupational Health Clinic for chronic symptoms, starting with the initial mold exposure. I'm told systemic mold would be an acute illness and would not have lasted this long - no tests were needed or performed.
11/2004 Emergency visit to Novato Sutter Heath Clinic after symptoms increase in severity: urinary tract sensation, urinate frequently, fatigue, ear/sinus/eye pressure, eyes sensitive to bright light, sometimes everything looks gray and darker; armpit and neck swollen, headaches, stiff neck, sometimes dizzy and disoriented, memory, a subconscious head shake while talking, creeping numb/warm feeling along my skull. Minimal blood and urine tests done, all negative.
12/2004 Increased symptoms persist. Visit Novato Sutter Health Clinic for more tests, no positive results. Prostate thought slightly enlarged, referred to urologist. Saw urologist Dr. B. Prostrate found to be ok. Wanted to scope urethra if symptoms persisted. The UTI symptoms are sporadic, and seemed to be lessening, and I declined. Dr. Breferred me to STD clinic for tests.
2/2005 Visit to County Health Clinic for STD's all thought negative. (Later, when Dr. R read test results, high Chlamydia panel antibody test result initiated further testing.)
I started taking high potency multivitamins, EPA fish oil, Vitamin C and E in addition to Glucosamin/Chondrotin. Glucosamin/Chondrotin definitely helps with frequency and level of knee joint pain, ear pressure. Left ear pressure starts to re-occur towards end of dose. Both knee and ear pain is almost constant if I stop taking, with ear involvement sometimes increasing to TMJ joint swelling, tooth root pain, sinus pain and headache, pain in both inner ears
Joint pain, ear and UTI symptoms persist, flue type illness less frequent. Researching these symptoms on internet health organizations, I find Bactrim/Vanadyl treats both ear infection and UTI. I don't have a primary care doctor at this point, so I order Vanadyl (similar to Bactrim) from MedMex without a prescription.
Taking Vanadyl 600mg/day 3/1-4/1/05 relieved sinus/ear pressure, bloating. Gradual lessened flue symptoms, stools became normal size. Urinary urgency and dripping sensation disappear, lots of energy for about a month. I hadn't realized how tired and low energy I was until I felt normal again. After staying awake all night to complete work, symptoms reappear the next day.
I took a longer dose of Vanadyl, and also acidophilus 6/1 - 7/21/05. After this, I felt great for about 2 months, until a drank too much alcohol. The next day I was very sick, and flue symptoms lasted about two months.
I took Bactrim 10/10 - 12/10/05 -results where not as good as Vanadyl. Started to feel a little better towards end, but symptoms never cleared. I either developed a resistance, or the slight change in chemical composition made a difference - one is a sulfamizole, the other a sufamazine. At the end of 2005 I still had most symptoms, but they were not at the 2004 level. The dizziness and disorientation didn't re-occur.
12/05. Symptoms: Bloating, gas; thigh and arm pain, headaches and stiff neck. Palms hurt at base of thumb both hands, now wrists arm, shoulder pain. Sporadic eye/sinus pressure. Urinate frequently, mild burning sensation. Knee and ear pressure controlled with Glucosamine Chondrotin. Feet hurt during some activities. Random feet pain wakes me up at night. New symptoms include swelling in my feet and ankles, and restless legs.
1/06 Found new primary care physician Dr P, who reviewed medical history and test results to date. No conclusions drawn. At this point I start to research causes of my symptoms, focusing on reactive arthritis, eliminating illnesses I have tested negative for, or those that are acute.
2/06 - 3//07 Saw Dr. R, who my wife had seen years earlier for Chronic Fatigue. He wrote a book on CFS in the early 90's. Dr. R reviewed previous blood testing, and had new lab work done. Had western blot lyme test done-negative, but borderline on some values. Testosterone levels were at the low end of acceptable range. While reviewing old lab test results and ordering blood work, I was asked to obtain report from Marin STD clinic. The STD Lab report noted high positive range Chlamydia antibodies. Further blood testing with Dr. R confirmed high Chlamydia anti-bodies for C. Pneumonia. I started taking various supplements such as MSM, fish oil, natural source testosterone, upon recommendation. I left there thinking I have CT, but not really understanding the different tests and types of Chlamydia. I planned following up with a urologist for swab CT testing.
Also I underwent allergy testing, and was found to be highly allergic to four foods, and moderately allergic to many items. I took allergy antigens for 3 months, until 6/07.
7/06 Both feet hurt and the lumps slowly increased in size, affecting activity. I decide to have them removed, first one, then the other after a six-week recovery. I was waking up at night from pain in my feet, and also need to move my legs when prone. Dr. E evaluates the foot tumors, obtains recent MRI's, and diagnoses plantar fibromatoma. He performs surgery on the right foot, which removes the most of the plantar fascia in addition to the fibroid. I had hoped removal and examination might reveal a cause. The tissue is cultured for fungus and gram positive bacteria, but nothing is found. Testing was not extensive.
8/06 Two weeks after foot surgery, I get a blood clot. I am diagnosed with DVT in the hospital emergency room. A week later I'm back because my jaw won't close. Hospital staff diagnosed an ear infection. I'm non-weight bearing for two months from the foot operation and clot, and took blood thinners until 1/07, first Lovenox and later Heparin. Blood testing during the clot diagnosis finds high hepatic ALT values. Eventually I get a compression stocking for my right lower leg. An ultrasound done in 1/07 found the clot smaller, but the clot remains.
I spend time during my recuperation researching causes for my medical problems, and find strong correlations between CT and my symptoms, even more for CP. I also find out CT urine testing is not very accurate, and very specific PCR CT and CP tests are available, which I have not done.
10/06 Ongoing migratory joint pain, urination urgency persists, becoming more frequent. Ear and knee pain still being controlled by Glucosamine Chondrotin. Occasional eye and sinus pressure type pain.
11/06 Both shoulders are sore and stiff. Wrists and elbows sore. Over the next few months my right shoulder became extremely painful during fast or reaching movements, and my left shoulder only occasional soreness.
1/07 I visit Dr. R to discuss the CT tests, now understanding the long-term nature of CT, and testing and treatments. Dr. R relates that I was positive for CP, and thinks a specialist would have detailed knowledge of the testing and treatment. He asks I see a Rheumatologist for a diagnosis. R also thought my insurance would not pay for long-term combination anti-biotic prescription without a more definitive test and diagnosis. I make an appointment with the Stanford Immunology and rheumatology clinic.
1/07 I start taking supplements recommended with CP combination antibiotic therapy found on www. CPNhelp.org:
N-a-c 2000 mg/d
Fish oil (850 mg EPA and 200 mg DHA) 2-3/day
Energizer type multi-vitamin
Q10 Co-enzyme 100 mg/d
Vitamin C 1000 mg/d
L-carnitine 500 mg/ 2-3/d
in addition, Dr. R recommended
Methyl-Sulfonyl-Methane (MSM)1000 mg/ 1-2 day
I'm also taking for joints:
Glucosamine Chondrotin 750/600 mg
It's hard to tell what helps, as symptoms are sporadic. When I have run out of one type of supplement and wait awhile before taking more, some symptoms increase. The multivitamin, Q10 and L-Carnatine seems to help my energy level in the morning, but I'm frequently exhausted by late afternoon even with them. I think I may have more days of better energy levels with them. NAC seems to help reduce the occurrence of abdominal, foot and finger pain. The fish oil seems to help with heart/chest pain. Glucosamine Chondrotin definitely helps with my ear and knee pain, and other joint joints. I saw a study where Glucosamine was found to reduce an immune system interluken response that causes joint inflammation.
2/07 and I visit of the Immunology and rheumatology clinic at Stanford. Dr. T oversees the work of an intern, Dr. S. By this time, the right shoulder would wake me up several times a night, and becomes increasingly painful even while resting my arm. The pain extended into my right elbow and wrist, and adjacent muscles with light lifting. With the acute shoulder pain, they suspect sarcoidis or a rotator cuff tear upon physical examination. I had x-rays of my hands and an MRI of my right shoulder. They also ordered an HHV-6 test, which was negative.
3/23/07 MRI of shoulder finds no rotator cuff tear or abnormal bursa fluid. Finding of type 1 flat acromion, mild edema along the inferior capsul, mild degenerative subchondular change of the glenoid. Possible early adhesive capsulitus.
4/07 I visit with Dr. K an orthopedic surgeon, to review MRI's. His diagnosis is adhesive capsulitus, which has no known cause. (In my research, one report noted the physical matter of the inflamed shoulder capsule is most similar to plantar fibromatosis) He gives me a cortisone shot in the shoulder, which greatly reduces the pain on normal arm use.
4/07 I follow up at the Stanford Immunology and rheumatology clinic. They review the MRI's and correlate the adhesive capsulitus diagnosis. The enlarged finger knuckles are found to have no bone abnormalities. The enlargement is caused by soft tissue, which does not appear in the x-ray. They prescribe Naproxen to treat the joint pain. In response to my concern and belief in a Chlamydia infection, they admit little knowledge of CP and CT and the required testing, and refer me to Dr. M of the Stanford Infectious disease clinic for Chronic Fatigue Syndrome. I need to complete testing for HHV-6, EBV VCA, EBNA, EBV EA first to get an appointment.
Current symptoms:
General: Except for the skin rash, foot, ear, and recent shoulder pain, most symptoms come and go. There may be a time of months when most symptoms are active, then a period of weeks or months when I have few symptoms and a higher energy level. Some symptoms appear one year, then take a year off before appearing again.
Recent hand and foot pain is sporadic but fairly constant with a quick onset, usually lasts 10-30 seconds, then stops completely. Joint pain may reoccur once or three times more in the same location at short intervals, a day later, or pain can flare up at another location. Some days I feel great in the morning, but tire easily. Lately, even when I feel normal, I still feel about 75% compared to the feeling of wellness after taking Vanadyl in 2005. Before 1997 I was physically active and energetic. From 1999 to 2005 I regained some energy, but had long bouts with illness, and ear and urinary tract symptoms started. I was able to resume some activities such as mountain biking, skiing, but was sidelined with knee surgery. At the end of 2004, I had a period of illness similar to 1997-1998, but lasting shorter. During the last two years my energy level has really dropped, and blood circulation has become bad.
Flu type symptoms: I'm using this term for lack of a better description or diagnosis. What I experience is an overall feeling unwell and tiredness, with random muscle, joint, body aches and pains. Sometimes a low-grade headache. Sometimes I feel like a fever, but body temp is usually slightly less than 97.6. This can continue for weeks or months 3-4 times a year, or last only one or two days during a good week. Some of these are probably a common flu or virus. When it is a lingering half sick condition that lasts more than three weeks, I think it is a flue I can't shake. I had 'flu symptoms' from last October through this January. Since taking new supplement starting in January, these feelings are more sporadic and last a shorter period, but still account for half the time. I know I am sick feeling more than I should be, and increasing feel tired and low energy.
Specific symptoms and locations
Head: infrequent headaches. When they do occur, usually after and with ear, eye and sinus pain.
Mental: Concentration good when not tired. Wife says I shake my head when talking last few years like Parkinson's, which I am unaware of doing.
Ear pain: occasional inner ear pain, once to twice a day. Much reduced with MSM and Glucosamine Chondrotin. Infrequently pain in ear cartilage.
Eye pain: recently a couple time a week, lasting 1 hr up to half the day, then long periods with no symptoms at all. Infrequently everything looks gray or washed out for several seconds.
Eye pain sometimes progresses to combination eye, ear, sinus, tooth headache pain 1-2 time/yr.
Mouth: Mouth sore in inner cheek or lip does not occur as frequently in past, maybe 2-3/yr. Also noticed slimy coating on roof of mouth in morning 1-2 times/yr last 3 years.
Throat : Paratoid glands swollen 1-2 times 2006 lasting for weeks, and in beginning of this year. This is improved from constant condition of past years, and not noticed for last few months. Inner throat has felt slightly swollen at times. Morning congestion (slight throat and nose mucus) for years. Also wife says I snore badly and have sleep apnea, starting in 1999?
Abdominal and chest pain: Infrequent since taking NAC. Previous occasional random pain lasting 10-20 seconds a few times a day starting in 2005. This would occur for maybe during one month, then once or twice during a three-month period, then repeat.
Urinary/genital: Still have frequent and urgent need to urinate about half the time, with symptoms coming and going. Occasional slight burning sensation on urination.
Shoulder pain: Right shoulder still painful on extension, but a level '6' instead of a '9'. Cortisone shot eliminated pain on normal motion, and reduced pain on extension. Able to get good night of sleep without pain on moving recently.
Arm pain: Occasional elbow and wrist joint pain, and pain along bones or in tendons under arm muscle.
Hands and Fingers: Sporadic pain in knuckles and finger bones all day and night. Fingers seem stiffer in morning. Hands are red to purple color when held low, starting in 2005.
I usually notice pain in my feet and fingers when going to sleep, or it wakes me up during the night.
Knees: infrequent short-term pain on both knees, once or twice a month.
Ankles and lower leg: Right leg and foot still post DVT, turns red to purple. Left leg and foot still swells up also, part of foot turns red. Using compression stocking on right foot most of the time.
Feet: Pain in right foot initially gone after operation, but recently short-term pain occurs in heel and toes. Right foot functions well, with exception of swelling and soreness caused by DVT. No lump to cause major pain. Left foot lump, and occasional left toes have sharp pain, which starts and stops quickly. usually noticed when falling asleep.
_________End of Intro Letter, Medical History ___________________ _________________________________________________________
6/2007 Started treatment with Dr P in Sacramento
Diagnosed with EBV and CPn
Combination antibiotics
1/8/09 well enough to start Bikram Yoga
2/5/09 Diagnoses with minor gall stones
2/10/09 Stopped taking prescription medicines, except for T# Triiodo-L-Thyronine SR 15 mcg 1x day. Take Nitroglycerin occasionally.
Still taking supplements:
Inosine 2x 1000 mg each morning, sometimes another 2000 mg before dinner
DMAE
NAC 2x 600 mg am & pm
NADH 5 mg am
SAM-e 200 mg am
Multivitamin am
Astragalus 2x 500 mg am & pm until I run out, then take a break
TMG 1000 mg am
Supergreen 'Perfect Food''
Vitamin A 1000 iu am & pm
Vitamin B12 5000 mg am
Vitamin C 1000 mg 3x day
Vitamin E mixed 400 iu am
Vitamin E Tocotrienols 125 mg pm
Milk Thistle Extract 300 mg am & pm
Horney Goat Weed 1000 mg 2x am ( + maca, mucuna, polypodium extracts)
'Source Naturals Life Minerals' ( incl 40 mcg iodine) am & pm
L-Arginine 1250 mg-Ornithine 750 mg am & pm
Acetyl-L-Carnitine 500 mg 1x day
CoQ-10 100 mg am
Alpha Lipoic Acid 100 mg ( w/ 333 mg Biotin) am & pm
Fish Oil(450 mg EPA, 300 mg DHA) am & pm
5-HTP pm
Melatonin 3 mg pm
Dr. P visit 6/2009
Did Doctor's Data Toxic Metal test panel 4/27/09 6 hrs after (20) DMSA . Tested elevated lead and mercury. Started OSR#1
Took OSR for three months starting in June
Started taking Urso Forte again
Reduced then eliminated NAC and Alpha Lipoic Acid from concern they transport mercury to brain
Stopped some supplements 8/09: Horney Goat Weed, TMG, 5-hTP, Melatonin
Dr. P visit 9/1/2009
Did Doctor's Data Toxic Metal test panel 9/13/09
High lead and mercury
retested toxic metals
Dr. P visit 12/1/2009
tested essential metals
took MonoLaurin again
Started Biofilm elimination protocol
3/1/10
Current meds and supplements, some part of Biofilm removal protocol:
15 minutes before breakfast and dinner:
Urso Forte 500 mg
'Now' Chitosan 1.5 g per 3 caps(1,500 mg), incl. 300 mcg Chromium
'Vitamin Shoppe' NAC 1200 mg per 2 caps (before breakfast only)
'Life Extensions' Super Curcumin w/ Bioperine (800 mg/5 mg)
'Arizona Naturals' EDTA 500 mg (recommend multivitamin 2 hours after)
'Doctor's Best' Serrapeptase, 40,000serratio units per cap
sometimes Coconut oil (counter to serrapeptase fat reduction?)
Inosine 1000mg(take breaks)
'Nutraceuticals' Piracetam 800 mg
'Source Naturals' DMAE 351 mg 2x day)
15 minutes before breakfast only:
T3 Triiodo -L-Thyronine SR 15 mcg
'Country Life' L-Argine/L-Ornithine/B6 (1,250/585/20 mg)
'Jarrows' L-Carnitine 500 mg
Right before eating breakfast and dinner:
First Flagyl, then Minocycline
now 5 days into Rodogyl ( Spiramycin-metronidazole) 26 mg/ 2x day
plus
olive leaf or oregano oil extract
Immediately after breakfast or dinner
Ultrase 371 mg
'Twin Labs' Betaine HCI with Pepsin (648 mg/130 mg)
'Natures Life B-50 High Folic Acid' multi B vitamins)
'Country Life' Buffered Vitamin C 1,000 mg
'Kirkland' D3 2000 IU
'Source Naturals' Phosphitidtyl Choline in Lecithin 420 mg
'Vitamin Shoppe' Alpha Lipoic Acid 600 mg
'Natural Factors' Liv-Gall Cleanse (Milk Thistle, Tumeric, Dandelion, Artichoke)
After breakfast only
'Now' Full Spectrum Minerals
'Vitamin Shoppe' A&D (10,000IU/200IU)
'Vitamin Shoppe' Daily VM Caps multi-vitamin/mineral/aantioxidant/enzymes
'Vitamin Shoppe' DHEA 50 mg
Mid morning:
'Garden of Life' Super Seed Fiber drink, sometimes add L-Glutamine 2g powder
After lunch
Ultrase 371 mg
'Natural Factors' Herbal Liv-Gall Cleanse
'Country Life' Buffered Vitamin C 1,000 mg
'Kirkland' D3 2000 IU
'Vitamin Shoppe' 7-Keto 25 mg
'Twin Labs' B-12 sublingual 500mg 1-2x
'Solaray'' Biotin 1,000 mcg
Mid evening or before bedtime
'Garden of Life' Super Seed Fiber
or 780 mg (3 caps) activated charcoal before bed
At bedtime
Sometimes Melatonin and 5-HTP
3/21/10
Stopped Biofilm protocol - IBS symptoms, leg cramps
4/1/10
started back with Serraptase, Curcumin, Lactoferrin
No NAC or EDTA
had upped T3 to 60 mcg/day because low body temp
Dr. P prescribed zinc- drew out magnesium, noticed muscle cramps
8/1/10
started taking Gia herbs thyroid support, Tyrosine
taking pregnolone (50 mg too much, 25 mg m-w-f.) 50 mg DHEA am, 7 Keto at lunch t-th.
9/1/10
stopped most supplements - loose bowels in am after taking
Found excessive B vitamins cause homocystein, acetly L-Carnitine suppressed T3 uptake by cells
still taking 30 mcg T3 in am only. temp measure 98.1 F
Gia herbs thyroid support,Tyrosine for Thyroid
multivitamin and multimineral
Curcumin
9/29/10
I'm feeling great. Last visit to Dr. Powell
T3/T4 ratio is very good
TSH is good, need to wean off T3
No EBV antibodies from tests
No active CPn infection antibodies, high levels indicating past infection
Summary:
From 1997-2007 had an unknown illness. I had a diagnosis in 6/2007 and started treatment for CFS, CPN and EBV. I stopped treatment in 9/2010 when 100% well.
I started this letter in 2005, added to in 2/06 and 5/07. This was prepared for Dr. P of Sacramento for intake when I starting seeing him June, 2007. This is not very complete, but may be of value for someone going through the same thing
No illness prior to 1997
8/ 1997
Exposed to extensive mold in a building interior during renovation work as an Architect
Strachbotrus Chartum and Penicillin mold were found.
I had flue like symptoms for almost two months, including high fever, body aches, sore throat, but recovered.
10/97 Visit again to contaminated building with respirator, no body suit.
Flue symptoms, fatigue, aches, 103 fever, sore throat
A succession of stiffness swelling and pain started in my joints.
First affected was one foot, and then the other was affected two weeks later.
Knees, hips, elbow joints followed in a similar pattern.
Flue type symptoms persisted for about 1 1/2 years, feeling very sick half the time, not 100% well between long periods of illness.
11/97 My primary care physician, Dr. J, ordered lab tests.
1/98 Lump on bottom of left foot appears after gym work out (leg press)
referred to Dr. D (podiatrist) Plantar Faciitus diagnosed.
1/98 Dr. J ordered more lab tests
Flue type symptoms, fatigue persists sporadically.
Joint aches and pains, knuckles became larger. Symptoms include stiff neck, sinus pain, headaches, creeping sensation on scalp, white mouth patch occurs monthly.
9/98 Dr.J ordered more tests. No diagnosis was made. Lymps, Uric Acid, GGT, Cholesterol and triglycerides were high in Jacoby test. Rheumatoid factor was high 44, when range was 26-34. Referred to Dr. C, Rheumatologist.
1/99 Visit and report, tests by Dr. C.
Negative test for Lyme disease. Possible early Sjogrens arthritis was diagnosis. Never had dry mouth or dry eyes. High hepatic test values.
1999 thru 2003 flue type symptoms lessened in frequency, and energy level increased. Overall, joint pain lessons. Foot pain, white mouth patch, fatigue persist off and on. Some symptoms last a couple days or weeks and occur every other month; other symptoms last a couple weeks or months, occur once or twice a year. Some joint pain lasts only a few minutes and occurs several time a day. Then I may have weeks without feeling any pain in that location.
During this time period my abdomen suddenly felt bloated, stools are smaller. Also developed skin redness around neck and chest, and rash on thighs at some point. My right knee became stiff and sore with skiing.
I thought my symptoms were caused by Sjogrens and didn't seek medical help. Developed UTI symptoms, unrelated to 'Sjogrens".
Started taking Glucosamine Chondrotin for joints. This helped reduce joint and ear pressure/pain.
3/2002 Dr. J retires, increase in symptoms prompted finding a new doctor. I started seeing Dr. P, general practitioner.
Ear pressure, sore throat for two weeks; flue type symptoms, sinus pressure, fatigue.
Right knee swollen, hot feeling joint, swollen neck glands, sweating at night.
6/2002 Dr. P tests.
Referred to Dr. F ENT specialist for ear pressure, throat soreness - Dr. F prescribed Flonase. Recommended allergy testing, didn't do
9 thru 11/2002 Symptoms now include urinary drip sensation without discharge. Frequent urination.
Dr. P prescribed short course of antibiotics twice, urinary symptoms are initially reduced, but re-appeared. Dr. P prescribed Grisefluvin for chronic jock itch. I felt good for 2 weeks after taking Grisefluvin, more energy. Jock itch returned.
4/2003 Saw Dr. P for sore throat, lasting one month. Step throat culture negative.
4/2003 Stopped taking Flonase-didn't do anything for ear pressure. Right knee pain increased, couldn't bear weight to walk up stairs.
8/2003 Saw Dr. D (Rheumatologist) for knee pain. Dr. D had x-rays taken, blood tests. X rays found slight bone ossification at patellar tendon. No rheumatoid factor, diagnosed no arthritis. Referred to Dr. B, knee surgeon.
8/2003 Dr. B suspected torn meniscus, didn't perform MRI or culture. Right knee surgery removed loose cartilage from chondral fracture, trochlear groove. Loose and torn cartilage 1" diameter on weight bearing surface of femur removed.
11/2003 New lump on bottom arch of right foot, revisit Dr. D. Both feet hurt random times, waking me out of sound sleep.
12/2003 Obtain MRI-Biopsy recommended. D refers me to Dr. J at UCSF orthopedic oncology. I see Dr. O at this office. He won't operate on foot because of 50% recurrent rate, and I can still walk.
At this point I realize if I don't have early Sjogrens or arthritis, what do I have? First joints swell and ache, then years later cartilage is damaged or lumps appear. I suspect my symptoms are related to one cause, starting with mold exposure. I have an ongoing UTI type problem, sporadic migratory joint pain, flues that last weeks or months; unexplained tiredness, eye and ear pressure, paratoid gland swelling, moth sores. Joint pain is most frequent in hands and feet. I relate my suspicions to my primary care Dr P, who thinks my various symptoms are unrelated, and some symptoms are in my head. I need to find another Dr.
2/2004 visit to UCSF Occupational Health Clinic for chronic symptoms, starting with the initial mold exposure. I'm told systemic mold would be an acute illness and would not have lasted this long - no tests were needed or performed.
11/2004 Emergency visit to Novato Sutter Heath Clinic after symptoms increase in severity: urinary tract sensation, urinate frequently, fatigue, ear/sinus/eye pressure, eyes sensitive to bright light, sometimes everything looks gray and darker; armpit and neck swollen, headaches, stiff neck, sometimes dizzy and disoriented, memory, a subconscious head shake while talking, creeping numb/warm feeling along my skull. Minimal blood and urine tests done, all negative.
12/2004 Increased symptoms persist. Visit Novato Sutter Health Clinic for more tests, no positive results. Prostate thought slightly enlarged, referred to urologist. Saw urologist Dr. B. Prostrate found to be ok. Wanted to scope urethra if symptoms persisted. The UTI symptoms are sporadic, and seemed to be lessening, and I declined. Dr. Breferred me to STD clinic for tests.
2/2005 Visit to County Health Clinic for STD's all thought negative. (Later, when Dr. R read test results, high Chlamydia panel antibody test result initiated further testing.)
I started taking high potency multivitamins, EPA fish oil, Vitamin C and E in addition to Glucosamin/Chondrotin. Glucosamin/Chondrotin definitely helps with frequency and level of knee joint pain, ear pressure. Left ear pressure starts to re-occur towards end of dose. Both knee and ear pain is almost constant if I stop taking, with ear involvement sometimes increasing to TMJ joint swelling, tooth root pain, sinus pain and headache, pain in both inner ears
Joint pain, ear and UTI symptoms persist, flue type illness less frequent. Researching these symptoms on internet health organizations, I find Bactrim/Vanadyl treats both ear infection and UTI. I don't have a primary care doctor at this point, so I order Vanadyl (similar to Bactrim) from MedMex without a prescription.
Taking Vanadyl 600mg/day 3/1-4/1/05 relieved sinus/ear pressure, bloating. Gradual lessened flue symptoms, stools became normal size. Urinary urgency and dripping sensation disappear, lots of energy for about a month. I hadn't realized how tired and low energy I was until I felt normal again. After staying awake all night to complete work, symptoms reappear the next day.
I took a longer dose of Vanadyl, and also acidophilus 6/1 - 7/21/05. After this, I felt great for about 2 months, until a drank too much alcohol. The next day I was very sick, and flue symptoms lasted about two months.
I took Bactrim 10/10 - 12/10/05 -results where not as good as Vanadyl. Started to feel a little better towards end, but symptoms never cleared. I either developed a resistance, or the slight change in chemical composition made a difference - one is a sulfamizole, the other a sufamazine. At the end of 2005 I still had most symptoms, but they were not at the 2004 level. The dizziness and disorientation didn't re-occur.
12/05. Symptoms: Bloating, gas; thigh and arm pain, headaches and stiff neck. Palms hurt at base of thumb both hands, now wrists arm, shoulder pain. Sporadic eye/sinus pressure. Urinate frequently, mild burning sensation. Knee and ear pressure controlled with Glucosamine Chondrotin. Feet hurt during some activities. Random feet pain wakes me up at night. New symptoms include swelling in my feet and ankles, and restless legs.
1/06 Found new primary care physician Dr P, who reviewed medical history and test results to date. No conclusions drawn. At this point I start to research causes of my symptoms, focusing on reactive arthritis, eliminating illnesses I have tested negative for, or those that are acute.
2/06 - 3//07 Saw Dr. R, who my wife had seen years earlier for Chronic Fatigue. He wrote a book on CFS in the early 90's. Dr. R reviewed previous blood testing, and had new lab work done. Had western blot lyme test done-negative, but borderline on some values. Testosterone levels were at the low end of acceptable range. While reviewing old lab test results and ordering blood work, I was asked to obtain report from Marin STD clinic. The STD Lab report noted high positive range Chlamydia antibodies. Further blood testing with Dr. R confirmed high Chlamydia anti-bodies for C. Pneumonia. I started taking various supplements such as MSM, fish oil, natural source testosterone, upon recommendation. I left there thinking I have CT, but not really understanding the different tests and types of Chlamydia. I planned following up with a urologist for swab CT testing.
Also I underwent allergy testing, and was found to be highly allergic to four foods, and moderately allergic to many items. I took allergy antigens for 3 months, until 6/07.
7/06 Both feet hurt and the lumps slowly increased in size, affecting activity. I decide to have them removed, first one, then the other after a six-week recovery. I was waking up at night from pain in my feet, and also need to move my legs when prone. Dr. E evaluates the foot tumors, obtains recent MRI's, and diagnoses plantar fibromatoma. He performs surgery on the right foot, which removes the most of the plantar fascia in addition to the fibroid. I had hoped removal and examination might reveal a cause. The tissue is cultured for fungus and gram positive bacteria, but nothing is found. Testing was not extensive.
8/06 Two weeks after foot surgery, I get a blood clot. I am diagnosed with DVT in the hospital emergency room. A week later I'm back because my jaw won't close. Hospital staff diagnosed an ear infection. I'm non-weight bearing for two months from the foot operation and clot, and took blood thinners until 1/07, first Lovenox and later Heparin. Blood testing during the clot diagnosis finds high hepatic ALT values. Eventually I get a compression stocking for my right lower leg. An ultrasound done in 1/07 found the clot smaller, but the clot remains.
I spend time during my recuperation researching causes for my medical problems, and find strong correlations between CT and my symptoms, even more for CP. I also find out CT urine testing is not very accurate, and very specific PCR CT and CP tests are available, which I have not done.
10/06 Ongoing migratory joint pain, urination urgency persists, becoming more frequent. Ear and knee pain still being controlled by Glucosamine Chondrotin. Occasional eye and sinus pressure type pain.
11/06 Both shoulders are sore and stiff. Wrists and elbows sore. Over the next few months my right shoulder became extremely painful during fast or reaching movements, and my left shoulder only occasional soreness.
1/07 I visit Dr. R to discuss the CT tests, now understanding the long-term nature of CT, and testing and treatments. Dr. R relates that I was positive for CP, and thinks a specialist would have detailed knowledge of the testing and treatment. He asks I see a Rheumatologist for a diagnosis. R also thought my insurance would not pay for long-term combination anti-biotic prescription without a more definitive test and diagnosis. I make an appointment with the Stanford Immunology and rheumatology clinic.
1/07 I start taking supplements recommended with CP combination antibiotic therapy found on www. CPNhelp.org:
N-a-c 2000 mg/d
Fish oil (850 mg EPA and 200 mg DHA) 2-3/day
Energizer type multi-vitamin
Q10 Co-enzyme 100 mg/d
Vitamin C 1000 mg/d
L-carnitine 500 mg/ 2-3/d
in addition, Dr. R recommended
Methyl-Sulfonyl-Methane (MSM)1000 mg/ 1-2 day
I'm also taking for joints:
Glucosamine Chondrotin 750/600 mg
It's hard to tell what helps, as symptoms are sporadic. When I have run out of one type of supplement and wait awhile before taking more, some symptoms increase. The multivitamin, Q10 and L-Carnatine seems to help my energy level in the morning, but I'm frequently exhausted by late afternoon even with them. I think I may have more days of better energy levels with them. NAC seems to help reduce the occurrence of abdominal, foot and finger pain. The fish oil seems to help with heart/chest pain. Glucosamine Chondrotin definitely helps with my ear and knee pain, and other joint joints. I saw a study where Glucosamine was found to reduce an immune system interluken response that causes joint inflammation.
2/07 and I visit of the Immunology and rheumatology clinic at Stanford. Dr. T oversees the work of an intern, Dr. S. By this time, the right shoulder would wake me up several times a night, and becomes increasingly painful even while resting my arm. The pain extended into my right elbow and wrist, and adjacent muscles with light lifting. With the acute shoulder pain, they suspect sarcoidis or a rotator cuff tear upon physical examination. I had x-rays of my hands and an MRI of my right shoulder. They also ordered an HHV-6 test, which was negative.
3/23/07 MRI of shoulder finds no rotator cuff tear or abnormal bursa fluid. Finding of type 1 flat acromion, mild edema along the inferior capsul, mild degenerative subchondular change of the glenoid. Possible early adhesive capsulitus.
4/07 I visit with Dr. K an orthopedic surgeon, to review MRI's. His diagnosis is adhesive capsulitus, which has no known cause. (In my research, one report noted the physical matter of the inflamed shoulder capsule is most similar to plantar fibromatosis) He gives me a cortisone shot in the shoulder, which greatly reduces the pain on normal arm use.
4/07 I follow up at the Stanford Immunology and rheumatology clinic. They review the MRI's and correlate the adhesive capsulitus diagnosis. The enlarged finger knuckles are found to have no bone abnormalities. The enlargement is caused by soft tissue, which does not appear in the x-ray. They prescribe Naproxen to treat the joint pain. In response to my concern and belief in a Chlamydia infection, they admit little knowledge of CP and CT and the required testing, and refer me to Dr. M of the Stanford Infectious disease clinic for Chronic Fatigue Syndrome. I need to complete testing for HHV-6, EBV VCA, EBNA, EBV EA first to get an appointment.
Current symptoms:
General: Except for the skin rash, foot, ear, and recent shoulder pain, most symptoms come and go. There may be a time of months when most symptoms are active, then a period of weeks or months when I have few symptoms and a higher energy level. Some symptoms appear one year, then take a year off before appearing again.
Recent hand and foot pain is sporadic but fairly constant with a quick onset, usually lasts 10-30 seconds, then stops completely. Joint pain may reoccur once or three times more in the same location at short intervals, a day later, or pain can flare up at another location. Some days I feel great in the morning, but tire easily. Lately, even when I feel normal, I still feel about 75% compared to the feeling of wellness after taking Vanadyl in 2005. Before 1997 I was physically active and energetic. From 1999 to 2005 I regained some energy, but had long bouts with illness, and ear and urinary tract symptoms started. I was able to resume some activities such as mountain biking, skiing, but was sidelined with knee surgery. At the end of 2004, I had a period of illness similar to 1997-1998, but lasting shorter. During the last two years my energy level has really dropped, and blood circulation has become bad.
Flu type symptoms: I'm using this term for lack of a better description or diagnosis. What I experience is an overall feeling unwell and tiredness, with random muscle, joint, body aches and pains. Sometimes a low-grade headache. Sometimes I feel like a fever, but body temp is usually slightly less than 97.6. This can continue for weeks or months 3-4 times a year, or last only one or two days during a good week. Some of these are probably a common flu or virus. When it is a lingering half sick condition that lasts more than three weeks, I think it is a flue I can't shake. I had 'flu symptoms' from last October through this January. Since taking new supplement starting in January, these feelings are more sporadic and last a shorter period, but still account for half the time. I know I am sick feeling more than I should be, and increasing feel tired and low energy.
Specific symptoms and locations
Head: infrequent headaches. When they do occur, usually after and with ear, eye and sinus pain.
Mental: Concentration good when not tired. Wife says I shake my head when talking last few years like Parkinson's, which I am unaware of doing.
Ear pain: occasional inner ear pain, once to twice a day. Much reduced with MSM and Glucosamine Chondrotin. Infrequently pain in ear cartilage.
Eye pain: recently a couple time a week, lasting 1 hr up to half the day, then long periods with no symptoms at all. Infrequently everything looks gray or washed out for several seconds.
Eye pain sometimes progresses to combination eye, ear, sinus, tooth headache pain 1-2 time/yr.
Mouth: Mouth sore in inner cheek or lip does not occur as frequently in past, maybe 2-3/yr. Also noticed slimy coating on roof of mouth in morning 1-2 times/yr last 3 years.
Throat : Paratoid glands swollen 1-2 times 2006 lasting for weeks, and in beginning of this year. This is improved from constant condition of past years, and not noticed for last few months. Inner throat has felt slightly swollen at times. Morning congestion (slight throat and nose mucus) for years. Also wife says I snore badly and have sleep apnea, starting in 1999?
Abdominal and chest pain: Infrequent since taking NAC. Previous occasional random pain lasting 10-20 seconds a few times a day starting in 2005. This would occur for maybe during one month, then once or twice during a three-month period, then repeat.
Urinary/genital: Still have frequent and urgent need to urinate about half the time, with symptoms coming and going. Occasional slight burning sensation on urination.
Shoulder pain: Right shoulder still painful on extension, but a level '6' instead of a '9'. Cortisone shot eliminated pain on normal motion, and reduced pain on extension. Able to get good night of sleep without pain on moving recently.
Arm pain: Occasional elbow and wrist joint pain, and pain along bones or in tendons under arm muscle.
Hands and Fingers: Sporadic pain in knuckles and finger bones all day and night. Fingers seem stiffer in morning. Hands are red to purple color when held low, starting in 2005.
I usually notice pain in my feet and fingers when going to sleep, or it wakes me up during the night.
Knees: infrequent short-term pain on both knees, once or twice a month.
Ankles and lower leg: Right leg and foot still post DVT, turns red to purple. Left leg and foot still swells up also, part of foot turns red. Using compression stocking on right foot most of the time.
Feet: Pain in right foot initially gone after operation, but recently short-term pain occurs in heel and toes. Right foot functions well, with exception of swelling and soreness caused by DVT. No lump to cause major pain. Left foot lump, and occasional left toes have sharp pain, which starts and stops quickly. usually noticed when falling asleep.
_________End of Intro Letter, Medical History ___________________ _________________________________________________________
6/2007 Started treatment with Dr P in Sacramento
Diagnosed with EBV and CPn
Combination antibiotics
1/8/09 well enough to start Bikram Yoga
2/5/09 Diagnoses with minor gall stones
2/10/09 Stopped taking prescription medicines, except for T# Triiodo-L-Thyronine SR 15 mcg 1x day. Take Nitroglycerin occasionally.
Still taking supplements:
Inosine 2x 1000 mg each morning, sometimes another 2000 mg before dinner
DMAE
NAC 2x 600 mg am & pm
NADH 5 mg am
SAM-e 200 mg am
Multivitamin am
Astragalus 2x 500 mg am & pm until I run out, then take a break
TMG 1000 mg am
Supergreen 'Perfect Food''
Vitamin A 1000 iu am & pm
Vitamin B12 5000 mg am
Vitamin C 1000 mg 3x day
Vitamin E mixed 400 iu am
Vitamin E Tocotrienols 125 mg pm
Milk Thistle Extract 300 mg am & pm
Horney Goat Weed 1000 mg 2x am ( + maca, mucuna, polypodium extracts)
'Source Naturals Life Minerals' ( incl 40 mcg iodine) am & pm
L-Arginine 1250 mg-Ornithine 750 mg am & pm
Acetyl-L-Carnitine 500 mg 1x day
CoQ-10 100 mg am
Alpha Lipoic Acid 100 mg ( w/ 333 mg Biotin) am & pm
Fish Oil(450 mg EPA, 300 mg DHA) am & pm
5-HTP pm
Melatonin 3 mg pm
Dr. P visit 6/2009
Did Doctor's Data Toxic Metal test panel 4/27/09 6 hrs after (20) DMSA . Tested elevated lead and mercury. Started OSR#1
Took OSR for three months starting in June
Started taking Urso Forte again
Reduced then eliminated NAC and Alpha Lipoic Acid from concern they transport mercury to brain
Stopped some supplements 8/09: Horney Goat Weed, TMG, 5-hTP, Melatonin
Dr. P visit 9/1/2009
Did Doctor's Data Toxic Metal test panel 9/13/09
High lead and mercury
retested toxic metals
Dr. P visit 12/1/2009
tested essential metals
took MonoLaurin again
Started Biofilm elimination protocol
3/1/10
Current meds and supplements, some part of Biofilm removal protocol:
15 minutes before breakfast and dinner:
Urso Forte 500 mg
'Now' Chitosan 1.5 g per 3 caps(1,500 mg), incl. 300 mcg Chromium
'Vitamin Shoppe' NAC 1200 mg per 2 caps (before breakfast only)
'Life Extensions' Super Curcumin w/ Bioperine (800 mg/5 mg)
'Arizona Naturals' EDTA 500 mg (recommend multivitamin 2 hours after)
'Doctor's Best' Serrapeptase, 40,000serratio units per cap
sometimes Coconut oil (counter to serrapeptase fat reduction?)
Inosine 1000mg(take breaks)
'Nutraceuticals' Piracetam 800 mg
'Source Naturals' DMAE 351 mg 2x day)
15 minutes before breakfast only:
T3 Triiodo -L-Thyronine SR 15 mcg
'Country Life' L-Argine/L-Ornithine/B6 (1,250/585/20 mg)
'Jarrows' L-Carnitine 500 mg
Right before eating breakfast and dinner:
First Flagyl, then Minocycline
now 5 days into Rodogyl ( Spiramycin-metronidazole) 26 mg/ 2x day
plus
olive leaf or oregano oil extract
Immediately after breakfast or dinner
Ultrase 371 mg
'Twin Labs' Betaine HCI with Pepsin (648 mg/130 mg)
'Natures Life B-50 High Folic Acid' multi B vitamins)
'Country Life' Buffered Vitamin C 1,000 mg
'Kirkland' D3 2000 IU
'Source Naturals' Phosphitidtyl Choline in Lecithin 420 mg
'Vitamin Shoppe' Alpha Lipoic Acid 600 mg
'Natural Factors' Liv-Gall Cleanse (Milk Thistle, Tumeric, Dandelion, Artichoke)
After breakfast only
'Now' Full Spectrum Minerals
'Vitamin Shoppe' A&D (10,000IU/200IU)
'Vitamin Shoppe' Daily VM Caps multi-vitamin/mineral/aantioxidant/enzymes
'Vitamin Shoppe' DHEA 50 mg
Mid morning:
'Garden of Life' Super Seed Fiber drink, sometimes add L-Glutamine 2g powder
After lunch
Ultrase 371 mg
'Natural Factors' Herbal Liv-Gall Cleanse
'Country Life' Buffered Vitamin C 1,000 mg
'Kirkland' D3 2000 IU
'Vitamin Shoppe' 7-Keto 25 mg
'Twin Labs' B-12 sublingual 500mg 1-2x
'Solaray'' Biotin 1,000 mcg
Mid evening or before bedtime
'Garden of Life' Super Seed Fiber
or 780 mg (3 caps) activated charcoal before bed
At bedtime
Sometimes Melatonin and 5-HTP
3/21/10
Stopped Biofilm protocol - IBS symptoms, leg cramps
4/1/10
started back with Serraptase, Curcumin, Lactoferrin
No NAC or EDTA
had upped T3 to 60 mcg/day because low body temp
Dr. P prescribed zinc- drew out magnesium, noticed muscle cramps
8/1/10
started taking Gia herbs thyroid support, Tyrosine
taking pregnolone (50 mg too much, 25 mg m-w-f.) 50 mg DHEA am, 7 Keto at lunch t-th.
9/1/10
stopped most supplements - loose bowels in am after taking
Found excessive B vitamins cause homocystein, acetly L-Carnitine suppressed T3 uptake by cells
still taking 30 mcg T3 in am only. temp measure 98.1 F
Gia herbs thyroid support,Tyrosine for Thyroid
multivitamin and multimineral
Curcumin
9/29/10
I'm feeling great. Last visit to Dr. Powell
T3/T4 ratio is very good
TSH is good, need to wean off T3
No EBV antibodies from tests
No active CPn infection antibodies, high levels indicating past infection
