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Rating: 2 out 5 stars)☆☆☆ (
For 8 years I have been suffering from an undiagnosed health issue. After seeking help from over a dozen doctors and medical experts and not finding any diagnosis or relief I then decided to try crowdmed.com. Here is my experience and review so far.
My symptoms are as follows: I was having chronic bumps on my eyelids and chronic stinging of the eyes and styes and chalazions for many months. I continue to have styes routinely every month. I never had styes before 2011. Many ophthalmologists and eye doctors have not been able to diagnose my condition. They just say that it is blepharitis, which basically means swelling of the eyelid.
A few months after that I started having chronic diarrhea, stomach aches and weight loss. I continue to slowly lose weight. But I do not have a loss of appetite. Through elimination I discovered that I can no longer eat pork, beef, peanuts, artichoke and few other things without getting very sick to my stomach. But I do not have a problem with dairy or wheat. I also have to be careful with too much fiber. I never had these problems before 2011. Stool tests, blood tests, a colonoscopy, a CT scan, and and upper endoscopy have all shown negative results as to a diagnosis.
A few months later I started having chronic nasal congestion and runny nose. I now have a runny nose and nasal congestion every day of my life. After trying many different antihistamines and nasal decongestion medicines my symptoms are still strong. None of the medicines bring any relief.
A few months before my symptoms started at the end of 2010, I was bitten by a tick. But I removed it in about an hour and I did not have a red bull's eye rash. But a couple of weeks later I did have what seemed like a bad flu and fever for more than two weeks.
Timeline of symptoms
11/12/2010 - Tick bite on my stomach. I removed the tick within an hour of being bitten.
11/26/2010 to 12/10/2010 - Sick with flu/fever
12/20/2010 to 12/31/2010 - Sick with flu/fever
01/05/2011 - New water pressure tank at house
01/08/2011 - Noticed bumps on my upper eyelids. Vision also getting blurry.
01/13/2011 - Doctor prescribed Optivar for eye allergies. It did not help.
01/27/2011 - I Licked Banana slug to see if it made my mouth numb.
02/02/2011 - Ophthalmologist prescribed Tobramycin-Dexameth and recommended Ocusoft Lid Scrub. I have been using Ocusoft Lid Scrubs for 8 years now. I think it helps but my eyes still have blepharitis and develop styes regularly.
02/09/2011 - Ophthalmologist prescribed Erythromycin Ophth Ointment.
03/22/2011 - Ate ground beef that was stored in the refrigerator and had been cooked about 5 days before. Diarrhea started.
03/23/2011 - Purchased and ate half a box of Crunch 'n Munch from the grocery store.
03/23/2011 - Ate broiled pork chops from the oven. Diarrhea within an hour.
03/24/2011 - Ate medium flavored boneless chicken strips from Wing Stop in Freedom, CA. Within 30 minutes I had stomach cramps and had to run to the bathroom with diarrhea.
04/17/2011 - I noticed that my temples were waning. I weighed myself and I was 160 lbs. 20 pounds lighter than I was at the beginning of the year. I had diarrhea just about every day for the past month.
04/18/2011 - I went to Palo Alto Medical Urgent Care for help.
04/19/2011 - Blood test: Normal.
04/21/2011 - Stool test: Normal. No ova or parasites seen in examination of the concentrate.
06/06/2011 - Chronic styes and chalazions on both eyes, upper and lower eyelids. I had never had styes or chalazions before 2011.
11/29/2011 - Eye Exam - Doxycycline Hyclate 50MG. Did not help.
12/20/2011 - Eye Exam - Inject/treat eye w/ medication (kenalog). Some relief from eyelid swelling.
11/01/2012 - Quest Diagnostics eye culture result: gram negative bacilli
11/28/2012 - Disease specialist at Palo Alto Medical. Prescribed Doxycycline 100mg twice a day again. Did not help. Caused severe stomach upset.
11/28/2012 - Blood test: normal.
11/28/2012 - HIV test: Negative.
11/28/2012 - Immunoglobulin test: normal.
12/20/2012 - Opthalmologist prescribed: Pred Forte (steroid) eye drops. Found some relief from eyelid swelling.
02/11/2013 - Food Allergy Test. Egg white, egg yolk, cows milk, soybean: Negative for all.
02/11/2013 - Celiac Test: Normal.
02/13/2013 - Fecal Fat Test: Normal.
03/12/2013 - Eyelid surgery on both upper eyelids at Stanford Eye Center. Removed scarring from chalazions and put kenalog injections in the eyelids.
04/01/2013 - Colonoscopy: Normal, no evidence of Chrohn's, colitis, h. pylori, polyp or tumor.
04/15/2013 - LYMES ANTIBODY Test: Negative.
04/16/2013 - Stool test: Normal. No ova or parasites seen in examination of the concentrate.
04/16/2013 - Giardia test: Negative.
05/20/2013 - Upper Endoscopy: A diminutive hiatal hernia was seen on retroflexion. Gastritis. There is no evidence of H. Pylori bacterial infection. Take omeprazole or prilosec OTC 20mg daily for 6-8 weeks. - Did not help.
07/09/2018 - Singulair - MONTELUKAST SOD 10 MG TABLET. Did not help.
07/25/2018 - Flonase (Fluticasone Propionate Nasal Spray). Did not help.
10/10/2018 - Breath Test: Normal. No sign of h. pylori or milk intolerance.
10/18/2018 - Allergy prick test: Cottonwood and Olive trees are positive at a 9. Dust mites are positive at 13. All grasses and weeds and most other trees are at 7.
10/31/2018 - Food allergy prick test: All negative (Milk, egg, peanut, soybean, corn, white potato, rye, rice, orange, tomato, yeast, whole wheat, shellfish)
12/3/2018 - 12/19/2019 - Allergy shots every week for a year to try and help with chronic allergies that I have had for a few years. (constant runny nose, red and irritated eyes, ear ache). The allergy shots did not help lessen the allergy symptoms at all in one year. The allergist had no further suggestions. There was a bad side effect that is not documented in the list of side effects for allergy shots. But I did find discussions online of other patients having this side effect. After 8 months of weekly allergy shots I could barely use my left arm (the arm that I received shots in). I could barely lift my arm over my head or reach for items without intense pain. I stopped doing allergy shots and switched to Sublingual immunotherapy allergy drops under the tongue for a few months. After a few months of no shots the pain in my left arm went down by 50%. But even 2 years later there is still intense pain in my arm if I reach for some things or try to do work with it.
12/19/2019 - 3/20/2020 - Sublingual immunotherapy allergy drops under tongue every day for 3 months. There was still no releif from my allergies.
12/9/2019 - ANA (Antinuclear Antibody) Test: Positive. (Suggestive of an autoimmune disorder)
1/15/2019 - Blood Test: Normal.
7/1/2019 - Comprehensive Parasite Evaluation (ParaWellness Research). Findings:
7/5/2019 - iGeneX tick borne disease blood test. Cost over $1500 USD out of pocket.
Western medicine will not accept the results of this test.
9/18/2019 - Lyme IgG/IgM Ab (LabCorp): YOUR VALUE <0.91 ISR (Negative <0.91, Equivocal 0.91 - 1.09, Positive >1.09)
1/13/2020 - MRI ABDOMEN ENTEROGRAPHY W AND WO IV CONTRAST: Normal
1/21/2020 - Small Bowel Capsule Endoscopy (Pill cam): Normal
1/21/2020 - Vasoactive Int Polypeptide: Normal
1/21/2020 - Parvovirus B19 Ab IgG: Positive (Results suggest past infection.)
1/21/2020 - Parvovirus B19 Ab IgM: Negative
1/21/2020 - EPSTEIN-BARR VIRUS AB PANEL: Past infection with Epstein-Barr Virus (EBV)
1/21/2020 - Varicella-zoster virus (VZV) IgG: Past infection
2/5/2020 - 5-OH-Indoleacetic AC, Urine: Normal
2/26/2019 - HIV Test: Negative.
2/26/2019 - Hepatitis Panel A/B/C: Negative.
2/12/2020 - C.diff Toxin B Gene PCR: Negative
2/12/2020 - Gastroenteritis PCR Panel (from stool): Negative (Campylobacter species, Plesiomonas shigelloides, Salmonella enterica, Shigella species, Vibrio species, Vibrio cholerae, Yersinia enterocolitica, Shiga-like toxin-producing E. coli, Cryptosporidium, Cyclospora cayetanensis, Entamoeba histolytica, Giardia lamblia, Adenovirus F 40/41, Astrovirus, Norovirus GI/GII, Rotavirus A, Sapovirus)
2/17/2020 - Cocci ID with Reflex to CF: Negative. (endemic fungi)
2/17/2020 - Brucella Antibodies: Negative
2/17/2020 - Strongyloides IgG Ab: Negative (A parasitic Nematode)
After submitting my case to CrowdMed I have had 20 Medical Detectives respond. Some of them have continued to follow up but some of them have gone silent after I respond to them.
I have had 10 suggested diagnosis's: Meat allergy, Sjogren's, Cystic fibrosis, Lyme disease, SIBO, Mast Cell Activation Syndrome, Oxalates, Taenia solium (parasites), Scleroderma, Reactive arthritis.
Out of these 10 suggestions only 2 of them have had more than one medical detective suggesting it. Three medical detectives suggested that it might be Lyme disease and three medical detectives suggested that it might be Cystic fibrosis.
I always thought that it might be Lyme disease because I have read that many times the tests come up negative and more thorough testing has to be done. I am also an avid hiker. But it is difficult to find a physician to pursue Lyme disease testing. My PCP (Primary Care Physician) did not want to pursue it. So I had to see an expensive specialist on my own without a referral. My Medi-Cal insurance does not cover it unless I am referred by my PCP to a very small list of doctors and practices. The detectives at CrowdMed have had no feasible suggestions on how to get properly tested without the huge expense.
So I am waiting for the results of tick-borne disease testing from IGeneX, Inc. for over $1500.00 USD. I was eventually going to get an expensive Lyme test done anyway even if I did not sign up for CrowdMed. But I was hoping I would find a way to do it without the huge expense.
Update 7/5/2019: I have had a Lyme test and other tick borne tests done from IGeneX which cost $1500. The results were indeterminate for Bartonella and supposedly positive for Lyme according to IGeneX standards. But they are not approved by CDC or IDSA. According to IGeneX testing positive is > or=80 and I had a result of 80. But western medicine doctors will not accept the result because the approved test says that I am negative for Lyme disease.
Last updated on July 4, 2022
Speech Recognition Anywhere
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