9 Different Doctors and No Concrete Diagnosis CFS

Prior to becoming ill in September of 2014, I was an extremely active individual. I was 25 years old, was 6’0”, and weighed 203 lbs. I ran 3-8 miles a day 5 days a week, biked 30 miles 2 of those days, and played soccer 2 nights a week. I frequently went fishing and diving and enjoyed high-intensity supports. I was a personal trainer and a cross fit coach. I recently received my master’s degree in mental health and rehabilitation counseling. I do no smoke cigarettes and I do not drink alcohol. Since becoming ill my physical activity has diminished to a walk around the block. When this happens I become extremely tired. If I push myself and try to run I’ll be on my butt for 2 days with flu-like symptoms – chills, swollen and sore lymphs, weakness in muscles, and just general malaise.  I am now 180lbs. Some things I’ve noticed are that my symptoms had gotten better in the winter months, but still very difficult to manage. I became more active but I had to take at least 800mg of ibuprofen daily (as prescribed by rheumatologist.) Every time I have been on antibiotics it seems like all of my symptoms became 10 x worse. The only drastic change to my life has been my place of work where I was exposed to black mold from January 1st 2014 – April 15th 2015. When I became sick our air conditioning at our office went out for 5 days. I have been to nine different doctors now and no one has treated me for toxic mold exposure. I am not saying that this is what I have, but up until this point no one has even looked into it. Two separate doctors have diagnosed me with Chronic Fatigue Syndrome. I was a perfectly healthy, active, individual prior to September 2014. I want to be very clear that I am not trying to get my employer in trouble; I simply want to be well again. I had everything in my life going extremely well until I became sick. I am posting in this forum to see if anyone has gone through something similar.

Most Recent Symptoms:

Confusion

Brain Fog

Difficulty Concentrating

Dizziness

Memory loss and memory problems

Difficulty Breathing – Wake up in middle of the night reaching for breath

Severe sinus pressure

Heart palpitations

Fatigue

Weakness

Aches and pain

Muscle pain in my legs and my arms (Feels like I’m wearing a sleeve over them tightly)

Pain in legs and arms

Chest pain (soreness from trying to reach for my breath.) – difficulty holding breath

Shortness of breath

Post Exertional Malaise

Headaches

Cold and flu symptoms

203-181 lbs.

Places I’ve gone and Medical History since September 2014

2008 – Barracuda Attack on left hand. 3x hand surgery.

June 2010-August 2010 – exposed to toxic black mold at college in Florida State University. Black mold was covered in the HVAC unit, the duct work, and certain areas in the house. It made ¾ of the roommates very ill, including myself, to the point where we had to move into a hotel. The landlord replaced everything, we moved back in and the symptoms diminished over time.

July 2012 – Belize

February 2013 – Begin Job as a Personal Trainer and Crossfit Coach

March 2013 – NY

April 2013 – LA

May 2013 NY

June 2013 – Ireland and Amsterdam

August 16th 2013 – Poconos Upstate NY Rafting Trip (Moved to NY for a month)

·      End Personal Training Job

October 2013 – Georgia for Wedding (Hiking)

October14th – December 13th 2013 Europe Trip – Ireland, Italy, Paris, Liverpool, Barcelona

January 2014 – Begin work in mold saturated environment. There was black mold growing out of walls and black mold in the a/c ducts that had to be replaced. 4/5 people in office became ill. One developed severe migraines, the other had a myriad of symptoms that they couldn’t diagnose. The owner had back surgery, and during surgery he had a heart attack (I’m not saying this is related, just an observation.) I, myself, had flu-like symptoms explained below similar to the ones I experienced in Tallahassee.

April 2014 – Turkey Hunt Central or North Florida

July 2014 – Florida Keys

September 4th 2014– No AC at office for 5 days.

September 7th 2014 – 12th – Severely ill

·      postnasal drip, severe sinus pressure, sore throat, rhinorrhea, hurts to swallow, dizziness, muscle aches, fatigue, nausea, minor respiratory problems – difficulty breathing (full breath)

·      2003

September 22nd – Doctor’s Express

o   800mg Ibuprofen

o   Azithromycin 500mg Tablet: 5 Days

o   Prednisone 50mg Tablet: 5 Days

o   Afrin – 2 Sprays: 3 Days

·      195 lbs (lost 8lbs in one week)

September 22nd – Doctors Express Follow-Up Phone Call (Symptoms became much worse and exacerbated)

·      Acute Sinusitis

o   Recommended CT scans (ENT)

o   Prednisone 50mg Table: 5 Days

September 29th – ENT – Confirm sinisitus

·      methylprednisolone 4mg DSPK – 21 Qty

·      Doxycycline HYC 100mg CAP – 20 Qty

·      Fluticasone 50 MCG Spray – 16 Qty

October 4th 2014– Bloodwork and CT scan of sinuses.

October 8th 2014 – Follow up and review bloodwork/ CT scan.

·      191 lbs (lost 12 lbs in 3 weeks)

·      “No significan muccopriosteal thickening or air-fluid levels. No evidence of acute or chronic sinusitis. A few tiny subcentimeter mucosal retention cysts are present and maxillary sinuses.”

·      Referred to (rheumatologist)

·      Morrow thinks it’s Chronic Fatigue Syndrome

·      Rizatriptan benzoate Maxalt – MLT 10 mg tablet – 9 qty as needed for headaches

October 10th – STD Tests Negative

·      Chlamydia

·      Gonorrhea

·      HIV

Body pain, flu like symptoms, and headaches become so bad it becomes difficult to stand up, thinking clearly, extremely disoriented. I felt like my sinuses were going to explode. Even the medication prescribed (rizatriptan) had no effect on my sinuses pressure or headaches so we went to the ER.

October 18th –Emergency Room

·      CT Head Brain without Contrast

·      Complete Blood Count

·      Comprehensive Metabolic Panel

·      Mononucleosis Screen

October 20th – (ENT)

·      MRI with IACS w/out and w/ contrast

o   ALL WNL

·      Results of 10/9/14 Hematology, Chemistry, & Special Chemistry

·      Allergens w/Total IgE Area 4

o   Mold Allergy comes back Negative

·      Prescribes another round of SUMATRIPTAN 100mg

October 5th – Dr. Reilly (PCP)

First week of NOVEMBER moved OFFICES because of mold, however, there is a mold infestation @ new office. I am the only one working there. It smells musty but I didn’t want to complain so I tried to fight through symptoms thinking they were related to prior exposure or illness related to September.

November 19th  (Rheumatologist)

·      Interchange Ibuprofen and Tylenol Daily

·      Diagnosis: CFS isn’t supported in medical community.

·      Diagnosed that it was “probably just a virus.”

December 8th – (Holistic Doctor)

·      IV Push for Vitamins

·      10k mg Vitamin D Daily for a month

·      Flax Seed Oil

December 2014 – FULL TIME AT NEW OFFICE (Mold)

December 15th – Rheumatology Follow Up

·      Blood work Results All Negative for Lyme, Autoimmune Diseases, and

·      Diagnosis: This is a virus and I will continue to get better over time

February 23rd – I tried playing soccer again but every time I did I became extremely run down and sick the day after. I was nowhere near the level of play that I am used to performing because I felt so sick.

Feb 26th-March 2nd Colorado

March 16th Rheumatologist follow up

·      Said because I had played a full game of soccer I should be okay. However, I he recommended I do not take ibuprofen and/or Tylenol everyday. I talked to him about how difficult it is for me to breathe and to catch my breath. He said I should have nothing to worry about and it would go away.

·      Diagnosed me with CFS and said I would eventually return to baseline.

April 27th 2015 – PCP 

·      (my new pcp because of insurance transfer) because many of the same symptoms came back. I have not used ibuprofen or Tylenol since I saw Rheumatologist

·      Azithromycin 500 mg 10 qt

·      Fluconazole 100mg 14 qt

The anti-biotic made me much worse. Similar/identical symptoms to the ones I had in September.  I felt like I was dying.

April 12th, 2015

·      Itraconazole 100mg 60 qt 30 days

Prescriptions

Date                            Name                          QTY     Days                Provider

09/22/2014             Azithromycin 500 MG Tab   5               5    Walk-In Clinic

09/22/2014             predniSONE 50 MG TAB      5               5    Walk-In Clinic

09/26/2014 predniSONE 50 MG TAB      5          5               Walk-In Clinic

09/29/2014 methylPREDNISolone           5          5               ENT

                        4 MG DSPK

09/29/2014 DOXYCYCLINE HYC              5          5               ENT

                        100MG CAP

09/29/2014 FlLUTICASONE 50 MCG        16       30             ENT

10/08/2014 SUMAtriptan 100mg TAB U/D 4     2               ENT

10/19/2014 SUMAtriptan 100mg TAB U/D 4     2               ENT

11/15/2014 SUMAtriptan 100mg TAB U/D 4     2               ENT

04/27/2015 Azithromycin 500 MG Tab   10       10             PCP

04/27/2015 Fluconazole 100 MG Tab      15       14             PCP

05/12/2015 ITRACONAZOLE 100MG       60       30             PCP

Like I said, every time I’ve been prescribed steroids and/or antibiotics I have felt significantly worse. My sinuses pressure skyrockets, my body feels like it has the flu again, and all of the symptoms I listed above are exacerbated.

I have pictures from my place of work that I took so I could show the doctors some of what I’ve been breathing in for the past year and a half.

Recently, I have been in touch with someone who has gone to the national treatment center for environmental diseases to focus on a mold exposure. I went on the same restrictive diet they told her to go on for a month. Non-starchy vegetables and any type of organic meat. I did this for 17 days. I was supposed to do a month. I didn’t feel like I had much improvement until I started reintroducing processed food back in to my diet. Headaches came back tenfold and all of my symptoms are severely exacerbated within 2 hours of me eating a meal. Antibiotics have a similar effect. Needless to say after 2 days of feeling terrible I am back on the diet. I supplement with L-Glutathione, vitamin c, omega 3 fish oil, glutamine powder, probiotic, synchro gold (turmeric), and  non-flush niacin. My symptoms go from a 10 to about a 4 when I changed my diet back.

I have been to 9 doctors now. I have written their diagnosis. Not one has a actually diagnosed it, they just suspect that’s what it is. 2 PCP’s (Virus, Candida from Mold Exposure), ENT  - Sinusitis, then CFS, then Migraines, Rheumatologist – Viral Infection and Chronic Fatigue Syndrome, Walk-In Clinic (Sinusitis), ER (Nothing), Allergist/Immunologist (Unsure referred to Infectious Disease, Neurologist (Myasthenia Gravis – Running Tests now), Holistic Doctor – (Virus), I have an appointment for an infectious disease doctor coming up. If this is a fungal infection, why are there no doctors who will treat it? Every time I bring up the fact that I worked in a mold environment seem to dismiss it because “I’m not allergic to mold.”

Let me know your thoughts. Thank you for taking the time to read it.

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