9 Different Doctors and No Concrete Diagnosis CFS

Posted , 15 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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.

1 like, 39 replies

Report

39 Replies

Next
  • Posted

    Quite similar to me Travis.  I was going to the gym every lunch time and then running nearly every night in preparation for a marathon.  I believe my body just gave up on me and said enough is enough.  Thay was 2 years ago.  I've had various highs and lows since then - I've just had to accept I can't really do any exercise anymore.  I see an ME/CFS specialist every couple of months but thats about it.  I've just accepted life won't be the same and dont push myself anymore - since I've done that I feel pretty good and lead a relatively normal life :-)

     

    Report
    • Posted

      Thanks for your reply Jimmy. It's difficult for me to transition into a sedentary lifestyle when so much of my life has been surrounded with physical activity. Sports, outdoors, fishing, diving, soccer, cycling, etc. What has your ME/CFS specialist said is going on?
      Report
    • Posted

      Hiya

      Every case of the illness is so different but reading yours its quite similar to mine.  The speciallists main advice to me was acceptance.  Accept you are ill and adapt.  I have been through the boom and bust so many times.

      On a positive note I played a full 90 mins of football two weeks ago and had no ill effects since (other than aching legs)  !

       

      Report
  • Posted

    Hi Travis, you sound a lot like myself. I'm 37 but used to run 20 to 30 miles a week. I completed the Great North Run in September and it has been down hill since then.

    However in March my rather astute Gastroenterologist noted my fatigue and sent me for a Vitamin D test. My level was 45 which is insufficient, but resulted in muscle and bone pain, fatigue to the point where I could barely walk 5 minutes, dizziness and a whole host of other issues. After 8 weeks of high dose Vitamin D treatment I am starting to feel a bit better, although it can take months apparently to fully replenish your levels.

    I would ask for a quick Vitamin D blood test if I was you and you haven't been tested. It can't hurt and you should have the results in 4 or 5 days.

    Report
    • Posted

      I will absolutely check into this Ben. I have over 50 pages of bloodwork, however, I have no idea how to read them. I'm going to bring this up to my doctor.
      Report
  • Posted

    Hi Travis, similar story here, semi-pro triathlete/marathon runner, 8+years. I'm 35 feeling 95. was 33 when i fell ill. I was working in a fast paced physical warehouse job for 2 years prior to becoming sick, 3.30am rises for 5am start, i would cycle to work and back again, then after work go swimming, goto the gym etc I feel ill around Nov2013 with viral like symptoms, come January 2014 i thought i was dying, my heart felt so weak, i'm never sick, called an ambulance on more than one ocassion. So like you been tested from head to toe over 18 months and ntothing signifciant is ever detected. Do you get very heavy feeling legs ? some days my legs can feel like concrete. I've been working with a local Chinese doctor who has diagnosed me with kidney yang deficinecy, which is believe is along the lines of adrenal burnout, it migh be something to consdier. Adrenals take a while to heal. I see the same CFS story over and over again with folks that were extremely active and get CFS, surely this is a burnout phenomenon ? The Chinese have the best explanation in  their life essence jing theory, as it would make sense as to why our blood work etc are all normal. This is a horrible illness and i wouldn' wish it on anyone. Recovery is possible.
    Report
    • Posted

      Wow David, yes I do. Some days it feels as if concrete was poured into my legs. I know the feeling you're talking about that your heart feels weak. I'm not sure if that's because we used to be so physically fit that our hearts ran more efficiently or if it is because of a degeneration due to lack of exercise coupled with whatever this thing is affecting us. I've started accupuncture and I'm not sure how it is working yet. My adrenals and thyroid are just on the cusp of being low to average. I agree with you that there is nothing like this that I would wish on anyone. Do you get the post-exertional malaise? It's as if I get the flu-like symptoms, swollen lymphs under my neck, sensitive to cold, very tired. How is your recovery going? Have you been able to exercise again?
      Report
  • Posted

    Unfortunatly I have found that doctors are generally useless if you find a good one hold on with dear life.  you sound a lot like me I have multi complex of things going on all similar to you. I have been diagnoised with cronic fatigue and fibromyalgia. I have every symptom of MS but only without the pins and needles and numbness. Doctors unfortuanatly are only allowing 10 minute appointments and like everyone overworked no time to be interested. good luck keep fighting with the doctors insist on being refered to specialist i.e reumatologist Nurolologist get checked for sleep apnea I insisted on seeing nurologist but never thought in a million that I would have it but i have severe sleep apnea and NO i do not snore loudly or all the time everyone is different. But keep fighting and insisting try and get an MRI scan to rule out MS 
    Report
    • Posted

      I couldn't agree more about these b.s. 10 minute appointments that take a month to get in to. It's so frustrating. Did treating the sleep apnea clear up your symptoms?
      Report
  • Posted

    Hi Travis,  doesn't surprise me with G.P.'s fortunately I have a good one.  With CFS/ME symptoms, if a person has had them over 6 month period then you have a right to be referred to a specialist who performs in this area.  So I would ask, and if you don't receive then tell them you have a right to see a specialist in this field for a diagnosis or not.  A specialist is the only one who can give you the official diagnosis.

    Go to Action for M.E site for information and help.

    All the very best, it does seem that things have been dragging on too long for you.

    Tx

    Report
    • Posted

      Thanks for the support Tina. My rheumatologist diagnosed me with CFS but said most patients return back to baseline. I may have to reschedule a follow up with him. He didn't give me any medication. Just grated exercise and "take it easy."
      Report
  • Posted

    Hi Travis

    Sorry to hear your unwell.

    It all sound very familiar I was very active.

    In some cases, CFS develops into M.E. I have suffered for the past 20 years with the disease (M.E), and as a result had to curtail most if not all of my previous life style. Don’t push your body to do what you once could do while its compromised, you will get in to a boom and bust cycle of feeling OK overdoing it and being bad for 3 to 5 days and then repeating the cycle.

    Most doctors cannot put a finger on the cause or an effective treatment in most cases, they can check to see what it is not, and work from there. It is a case of check for the obvious and what you are left with is perhaps it.

    The treatments offered for the condition is mixed and the result’s people get from taking certain medicines is mixed also, more of a hit and miss style of treatment. No one cure all for this disease as of yet. What works for me might only help 5 to 10% of other suffers the  90 to 95% of suffers it gives no help or makes them worst.

    I hope my slant on CFS/ME is helpful, even if it is not the answer you wanted. After suffering for 20 years, you tend to take your life off hold and make the best of the situation you find yourself in. live with it and do not fight it as it has a habit of biting back. Oh, people do die from this it is not nice at all… I read on line the UK government has researched the condition/disease and locked the findings away for 70+ years under the official secrets act, so what they discovered about it is anybody’s guess. Perhaps simply no cure?

     

    Report
    • Posted

      The MRC’s secret files on ME/CFS are closed (ie. unavailable to the public) for an unusually lengthy period of 83 years. The standard closure period is 30 years but, as in the case of these files on ME/CFS, the standard closure period may be extended.

       

      The 30-year rule usually applies to documents that are exempt from release under a Freedom of Information Act (FOIA) request and include, for example, documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential.

       

      It may be recalled that during the life of the Chief Medical Officer’s Working Group on ME/CFS (1998-2002), lay members were ordered not to discuss the deliberations and were even threatened with the Official Secrets Act, for which no explanation was proffered.  A letter dated 16th June 2000 from Mrs Helen Wiggins at the Department of Health NHS Executive Headquarters in Leeds was sent to lay members of the Working Group; this letter stressed that it had become increasingly important that any documents or information, in whole or in part, that might contribute to the report must be kept confidential and to this end, members of the Working Group might be compelled to sign the Official Secrets Act.

       

      The above was found on the meactionuk dot org dot uk webpages how true it all is I dont know but is worrying if its only 1/2 true.

       

      Report
    • Posted

      What have you ound that works best for you? I can absolutely relate to what you're talking about as to feeling okay for a day or two, pushing myself and then I'm set back for 3-5 days. It's absolutely ludicrous and is maddening at ties. I'm sorry you've had to suffer with this for 20 years. Mentally, I'm at the point where I am not going to accept that this disease isn't cureable. I'm sure after 20 years I'd accept it too but unfortunately I can't right now. It has been very difficult to deal with.

      Why would a government lock the findings away for 70+ years? I'm from the U.S. and I think I've heard about them doing this here.

      Report
  • Posted

    Hi Travis,

    I have CFS almost 2 years,

    prior to that fit 40 YO male, working out 3-4 times a week....golf etc. For almost 2 years everything on hold. Getting through each day is a struggle. Tried many things but no success yet.

    Its very tough to live with.

    Report
    • Posted

      Sorry to hear. I feel like if I were older I could accept something like this but I'm only 26. The more I think of it I don't think anyone at any age should have to go through it or accept it. The most difficult part is how broad the diagnoses is. 
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up