Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

9 Doctors and No Concrete Diagnosis

Discussion in 'Fungal Infection (Yeast, Candida)' started by travis13, May 28, 2015.

  1. travis13

    travis13

    Messages:
    6
    Likes:
    1
    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

    Shortened Attention span

    Dull Reflexes

    Difficulty Concentrating

    Dizziness

    Disorientation (forget of day, what I did)

    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.
     
    Last edited by a moderator: May 28, 2015
    leokitten likes this.
  2. Martial

    Martial Senior Member

    Messages:
    1,342
    Likes:
    1,178
    Ventura, CA
    Look into survivingmold.com, Dr. Shoemaker has a specific protocol to recover called CIRS. I am also 25 and become abrutly very ill back in 2013, previously being in phenomenal shape and never having health issues. I lost a ton of weight and was basically house bound. Finally was diagnosed with lyme disease late 2013, went on for treatment for nine months, still using an herbal protocol. Now 80% better, lifting, doing martial arts, working, and having an all around life again while continuing to make more improvements. You can definitely become more well again once you find out what is going on, and finally getting proper treatment regardless of cause.
     
    Clodomir likes this.
  3. travis13

    travis13

    Messages:
    6
    Likes:
    1
    Yeah it's funny I've been talking to a buddy who had a run around with Lyme disease. I have been exposed to them in college and I've had them on me before but I never had gotten ill from any bites that I know of. They tested me twice and both times it came back negative. Some of the symptoms I exhibit are basically the same and it makes me wonder if I have false negatives.

    Not one person seems to know what it is exactly. Migraine medication doesn't work. Almost all of my blood tests have come back normal. I'm waiting on a mycotoxin test to come back. This has been a really long road for me. Were you diagnosed with Lyme the first time they ran blood work?

    I have read a lot about the shoemaker protocol however it has been very difficult for me to get on the plan due to the fact all the specialists I've been to haven't been able to determine that's what the cause is. Yet they haven't prescribed any tests. I went and bought a mycotoxin test from bio trek labs. As soon as I get that information I'll be posting about it so hopefully I'll get some answers. Glad to hear you're doing well again and they caught what it is as quickly as they could.
     
  4. Alea Ishikawa

    Alea Ishikawa

    Messages:
    233
    Likes:
    327
    @travis13 - I'm assuming you've had a normal battery of tests run, such as thyroid panel, electrolytes, iron, B12, 24-hr cortisol, etc.

    Like Martial, I've heard of Shoemaker for mold stuff. I must admit, though, that the practice appears sketchy to me. Regardless, I've heard secondhand of folks somewhat improving their condition via extreme avoidance.



    I must admit that your story sounds somewhat like mine. Working and being physically active, then taking a sudden unexplained nosedive and experiencing incredible neuro symptoms and mental/physical exhaustion. I had difficulty lifting my arms and lacked the cognitive ability to drive, read much, or put a few objects into a moving box. I had numerous hospital and clinic visits and saw about as many specialists as I have fingers. Tried allergy meds, antibiotics, diet changes, supplements. A steroid shot in the hip landed me in bed for maybe ~20 hours. I was diagnosed with CFS, fibromyalgia, and POTS.

    Mold was suggested, but the house tested clean and an infectious disease doctor and nurse told me mold wasn't my issue.



    We've had some members on the forum who went down the ME/CFS route and then later tested positive for Lyme and/or co-infection(s). Personally, I tested for Lyme through Igenex and Lyme co-infections via LabCorp after doing a "challenge." I came up with a positive IgG for babesia and activity on two bands IgG and IgM for Lyme. I have an appointment with an LLMD in July.

    Some known co-infections are Bartonella, Babesia, Ehrlichia, and Anaplasma. I think M. pneumoniae, C. pneumoniae, and reduced oxygen might cause a person to feel like they can't get enough air? Maybe something to look into. Do you have any band information from your Lyme test?

    If you go the Lyme route, hope you have insurance, because testing can be expensive.
     
    Last edited: Jun 4, 2015
    Sushi likes this.
  5. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,173
    The immune reaction to mold in cases like this has nothing to do with allergy to mold. I would look into Dr Shoemaker's work. Seeing more conventional doctors at this point is probably a waste of $.
     
    Sushi likes this.
  6. travis13

    travis13

    Messages:
    6
    Likes:
    1
    It sucks because I've looked far and wide to see if Dr. Shoemaker's protocol has been successful. There hasn't been many testimonials that didn't sound generic. I've reached out to them and have gotten no response. I have had so many tests run that I don't even know what they've tested for. I am seeing an infectious disease doctor coming up shortly. I will definitely bring some of what you mentioned up with him. (hopefully he'll have an open mind.) You would think living in Florida that most doctors would be familiar with mold exposure but I haven't had one who has taken this seriously. Like I stated above, my pcp told me that I would be able to see a specialist because he thinks that what it is, but my god not one specialist has entertained the idea. Thanks to all for your replies.
     
  7. Vic

    Vic

    Messages:
    137
    Likes:
    51
    Did you injure yourself at all while doing crossfit? Strain your back doing front or back squats? Hips during deadlifts? Any chest tearing? Muscle strains? How do your shoulders feel? I'm guessing your hand hurts from that snake bite. You compensate for it? How do you feel when you overhead squat now?
     
  8. travis13

    travis13

    Messages:
    6
    Likes:
    1
    No, I never hurt myself once. My shoulders feel normal. I can't lift weights at all due to the malaise I feel hours after I lift. The bite I had was by a barracuda fish, not a snake. This was years ago so I don't think it had any effect on me now. It's a bacteria ridden fish which is why I mentioned it.
     
  9. travis13

    travis13

    Messages:
    6
    Likes:
    1
    Who tested you for Lyme through Igenex? Which doctor?
     
  10. Vic

    Vic

    Messages:
    137
    Likes:
    51
    What did your rheumatologist prescribe ibuprofen for?
     
  11. travis13

    travis13

    Messages:
    6
    Likes:
    1
    He didn't actually prescribe it. He told me it was okay to take every day to alleviate the soreness I had felt after exercising. It seems like my body is chroniclly inflamed. Ibuprofen helps.
     
  12. Clodomir

    Clodomir Where is the sun?

    Messages:
    174
    Likes:
    230
    Belgium
    Hi,

    I was also diagnosed with CFS. It came very suddenly, after a vaccine. After that, my diagnose change in lyme chronic disease. The vaccine was the trigger that wake up my lyme problem. Maybe Mold is the same for you...
    I had to do twice the test: first was negative, then positive.
    Be careful, because your partner can have it also... My husband have also lyme... it can be transmitted by blood or sex...
    BTW don't take to much sumatriptan. I have banned this drug for ever, because, there are to much unknown side effects... when I told my neurologist (who prescribe it) that I take 2 pills a day, he refused to give me more prescription...

    have a nice day

    Clodomir
     
  13. Alea Ishikawa

    Alea Ishikawa

    Messages:
    233
    Likes:
    327
    My primary physician, although I had a test request from my specialist, which probably helped move things along. Igenex is paid outside of insurance, but cheap at around $200 total for IgG and IgM Western Blot (Igenex test #188 and #189). Co-infection testing was done through a basic lab, covered by insurance.

    I'd be concerned about other possible pathogens from travel, too. Europe also has a different profile for Lyme & co.

    Have you already tried something like pseudoephedrine or an antihistamine for the sinus pressure?
     
  14. TheChosenOne

    TheChosenOne Senior Member

    Messages:
    206
    Likes:
    64
    Wow. That are a LOT of antibiotics. You gut must be completely destroyed.
    This is a very typical candida symptom, along with sinus problems. Do you have a coated tongue?

    You can try to do a candida diet (basically a low sugar diet) and see if your symptoms get better.
    I don't advice a very strict diet (what I did). Do a lot of tests! What I recommend is a methylation test as well as a hair test (for mercury). They are both rather cheap.
    I was able to restore my gut with chelation.
     

See more popular forum discussions.

Share This Page