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My son has been suffering since a very young age with a variety of symptoms that have gone undiagnosed over many years of seeing different doctors, taking batteries of tests, and Googling everything we could find about his symptoms.
I suspected Lyme Disease, and he was tested negative by his primary care physician, but I read a lot of info about the test results being unreliable, especially if you are not seeing an LLMD. I'm looking for an LLMD in the San Jose/San Francisco Bay Area in California. Thank you for your help!
Here is a list of his symptoms. If you have any ideas at all please help us solve this agonizing mystery! Thanks so much for your help!
Age- 2-3 Severe flu-like symptoms, eventually requiring hospitalization for dehydration. Crohns disease symptoms noted, diagnosed after colonoscopy
Early Teens- Frequent swelling of the feet, hands, and lips/tongue. Swelling was itchy and became worse when scratched. Crohns disease symptoms in bowels disappear and are rarely bothersome after this point.
Age 17- Pink and painful irritation on various parts of the body, veins in arms became very hard. Muscles tightened up in limbs to the point in which movement was difficult. Lost the ability to walk shortly. Diagnosed to be complications arising from Mono
Age 18- Pink irritation in legs again, prolonged muscle soreness near the irritation.
Age 19 Summer- Pain in lower back, presumed to be kidney pain. Eventual blood in urine and extreme pain assumed to be kidney stones but no stones ever seen. Blockage in one kidney is documented by ultrasound. Treated with Prednisone for a month and the blockage cleared.
Age 19 Winter- DVT in left leg causing immense pain. Hospitalization and a surgical procedure to clear out the clot. Heparin for the first few weeks and then Coumadin for 6 months.
Age 19- early 20- symptoms similar to priapism occur. Ultrasounds show a thrombosed vein. Other superficial clots occur in the feet. Priapism symptoms occurred before and after the coumadin, superficial clots in feet mostly afterward. Began taking Ginkgo Biloba extract to thin blood, no more superficial clotting. Swelling and pain in right buttock, MRI shows torn muscle fibers and fluid buildup. Shortly after this clears, pain and swelling in one testicle begin. It is assumed to be a cyst and is treated with antibiotics, it eventually passes.
Age 20 Late- Pink irritation appears on left leg, assumed to be superficial clotting. It is painful to the touch and travels around the leg in a slow traceable path. Moves from below the knee to slightly above the the knee in the thigh muscle. A week or two later, spontaneous and severe pain begins in that area suddenly while resting the leg. Pain is so severe it is assumed to be a blood clot again but no clot is found after ultrasound. MRI reveals torn muscle, but no injury/strain had occurred beforehand. A twitch begins to develop in the left arm/shoulder as the leg heals up. The twitch moves up into the neck eventually and remains there even now. It is aggravated by stress. Treatments with Ativan are effective but debilitating. Adrenaline blockers were also effective yet caused depression. The twitch has not stopped and currently ativan is used when absolutely necessary, avoided otherwise. Age 21- Attempted treatment of allergies with allergy shots, after the first shot had a resurgence of small forms of many of the aforementioned symptoms and immediately stopped the shots.
Current- Twitching continues. Occasional swelling in hands when typing or writing for extended periods of time. Pain in kidneys/while urinating after drinking wine, other alcohols do not appear to cause any problem. Frequent diarrhea since early childhood, possibly caused by lactose intolerance. Recurrent muscular pain in right shoulder causing sleeping difficulties. Gets worse over the night or when resting in a reclined position. This has been on and off the past two months. No identifiable strain other than carrying heavy things up into room which have been doing for the past year and a half.
Posts: 2 | From San Jose, CA | Registered: Jan 2012
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Hello! I'm so sorry to hear about your son. I have struggled with a severe case of Lyme, Babesia & Bartonella for several years. A lot of the symptoms you listed were not familiar to me but each case is so different so it's possible he could have Lyme. I would recommend googling "Pacific Frontier Medical". It's a clinic in Redwood City. Dr. S. H. there is extremely knowledgable and I trust him with complex, dangerous cases. I always felt like I was in good hands.
I really hope your son gets better soon. It's tough on us kids to be sick but it's just as tough if not tougher to be the parent, I'm sure. Hang in there Sending healing thoughts your way.
Posts: 1 | From CA | Registered: Jan 2012
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Hi PeachyLeeshy, Thank you so much for your recommendation. I have read up on Dr. S.H. and he looks like he is very knowledgeable about Lyme and related diseases. I wish you the best of luck getting back to good health!
Posts: 2 | From San Jose, CA | Registered: Jan 2012
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I think there is a lyme support group at El Camino Hospital in Mt. View. I have lost the info...if anyone has it, please post. I am looking for a PCP in this area and want to contact that group.
MirrorMan, I am pm ing you.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Thanks, Robin. I forget everything almost before I stand up from the computer.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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That's why I write lots of visible post-it notes to myself and stick them on the computer - Posts: 13155 | From San Francisco | Registered: May 2006
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Sending healing thoughts your way.
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