9 Different Doctors and No Concrete Diagnosis CFS
Posted , 15 users are following.
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
wknight travis13
Posted
Fortunately I have a great GP who after every test known to man concluded I had CFS and sent me to a specialist who confirmed her diagnosis. For years I would boom and bust. It was difficult because I was trying to hold down a stressful job and didn't want to give up all the things I enjoyed doing.
About 16 months ago I had enough of boom and bust and spending days stuck in bed and doing nothing so started a very serious pacing plan. I resolved my brain fogging issues playing games on my tablet like Solataire (cos its short) and Suduko when I felt a bit better.
On the physical side I learnt just how much I could do, got myself stable by learning to say NO and then slowly started incrementally increasing my energy levels. I did that using cycling, first indoors and my Garmin stats clearly slow how over time I have increased by a simple 5 min simply spinning the wheels to a 25 mile ride up a steep hill last weekend.
I also learnt to CONTROL my activity level. Do things where I can stop, not when other people. Therefore by my rules football is out because you can't suddenly playing in the midle of a match, but cycling indoors works because I can stop at any time. Also avoid commitments because if you don't feel good them you don;t have to do. e.g. I carefully planned the 25mile ride but delayed it 1 day due to how I felt. I have now rested for a week to give the body a chance to recover. So for me return to exercise has been possible but I am a very determined person
Hope this helps and best of luck but it will take a LONG time for change to take effect
travis13 wknight
Posted
wknight travis13
Posted
I told a couple people only why I would cancel and they were all very understanding.
The brain fog I dealt with by playing apps on tablet. I started with Solitaire which is a short game but requires some memory. Remember you have to train those pathways again. Later I moved onto Suduko. Initially on a bad day I couldn't complete it, then it took 30 mins, my record currently is just under 5 mins.
The way I looked at it was I had spent years keep going and the future looked pretty bleak. As so as I really started to pace, say no, the short term pain has proven to be a big long term gain and I am educating my body to be active again
travis13 wknight
Posted
wknight travis13
Posted
travis13 wknight
Posted
jackie00198 travis13
Posted
First off, I'm so sorry you're going through all this. Second, I'm extremely impressed at how thoroughly you've documented everything. As you probably already know, ME/CFS often starts with a virus, or some other assault to the body. I suppose your exposure to the black mold could have opened the way for ME/CFS, though I don't think there's any way to know for sure. All I can say is that your symptoms sound spot-on for ME/CFS--assuming you've had a complete blood workup that excludes other diseases. Where do you live? There are some topnotch ME/CFS specialists here in the U.S. You might gain some clarity if you see one of them. In the meantime, in case do you have this illness, take it easy. Someone like you (and many of us) is used to a high level of activity, so it can be hard to dial it down. But you can make matters much worse by doing too much activity. Avoid caffeine and sugar, eat healthfully, get a good night's sleep if you're able, and de-stress in any way you can. Stress can significantly ramp up symptoms.
travis13 jackie00198
Posted
Thank you for your suggestions. I think stress of going through an entire life adjustment, the lack of the afformentioned activities that I'd usually use to destress, and trying to figure out what I have has severely skyrocketed my stress. I discontinued drinking caffeine and I do love sugar for desert but seldom eat it.
I appreciate your response and I hope you become well.
dentalcfs travis13
Posted
1) Do you feel that you're now pinpointing the issue to mold and/or its mycotoxins as you had adverse effects to it on the past? What if its the other way around? I.e. the CFS condition causes you to react more to the mycotoxins?
2) Can you describe the progression of the headache since the past year? Did it came up acutely and never subsides since the beginning, or did it gradually came up. Other than, the headache coming up 2 hours after the meal.
3) Why did they prescribed you Fluconazole and Itraconazole? Did they find fungal spore on your stool test?
4) Do you experience some sort of gastroparesis or change in bowel movement schedule -- some delay, for example? If so, how was it progressed?
5) You were active in sports. Have you even had acute injury involving your back or neck?
6) Your 4 wisdom teeth, if you have any, are all fine? None impacted, cavities, problems?
dentalcfs
Posted
travis13 dentalcfs
Posted
1) I had initially thought when I first got sick that it was directly related to mold due to the environment that I had been working in. It was a run-down building with mold seeping out of some the walls in some rooms. I would just be very surprised if the CFS had caused me to react more to mycotoxins. I like your dualistic thinking because I had never thought about it like that before. However, from what two doctors had explained to me about CFS is that it is a gradual onset. For me I can pinpoint the days of the week of when I had became initially ill. Maybe the doctors that told me it was a gradual thing were wrong.
2) The progression of the headache was HORRIBLE in the first 2 months. That is when I checked myself in the ER. They couldn't find anything wrong with me. It was to the point where I wasn't even able to focus on anything. Fiorecet really helped the headaches. They had subsided up until I recently got sick again. It's like in the colder months I became better. However, this is when I was taking the 800mg of ibuprofen daily, sometimes twice daily. So I'm not sure how much of my symptoms were masked up. This recent bout of headaches after the winter months were over (and when I stopped taking ibuprofen) because I thought I had started to feel better, started in my sinuses and under my eyes. This is when all the symptoms came back tenfold, and even worse. I thought it was just another sinus infection but my ENT said this was not the case. My pcp had prescribed me antibiotics and that had been the worst I had felt since September. I felt like I was dying again. Sometimes it comes after the meal, but I have returned to my normal diet (non-restrictive) and the headaches haven't been nearly as bad when I eat like I normally do. Now I am wondering if this is because of I'm feeling better because I'm further from being off the antibiotics, I am no longer in the office, or the restrictive diet I was on had something to do with the headaches. There are so many variables it's driving me nuts. I do not get nearly the headaches after eating 2 hours later which I find to be comforting, and makes me wonder if it's not the food.
3) My PCP prescribed me fluconazole and itraconazole because he had a hunch that it was due to a systemetic fungal infection (possible candida) but never tested me for it. This is why he referred me to a infectious disease doctor, I suppose. I see him on June 15th.
4) I usually have a bowel movement once per day in the morning. It's usually pretty consistent.
5) I have never had any acute injury involving my back or neck. I've never broken a bone. The only time I've had major surgery was after the barracuda attacked my hand. I had 3 severed tendons and underwent 2 surgeris to correct everything in my hand. This is a fish that carries loads of bacteria in their mouth. This was 7 years ago so it is difficult to say that that had anything to do with it.
6) I have no problems with my wisdom teeth. They were all removed. I have had cavities. I've read of mercury poisoning in fillings and I'm going to bring that up with my doctor to see if that has been tested.
travis13 dentalcfs
Posted
dentalcfs travis13
Posted
Most of sudden CFS onset sufferers were diagnosed as post-viral illness following acute viral infection. Which doesn't seem to be the cause on yours.
I just took another look and indeed chronic exposure to mycotoxins do have neurotoxic effects. You can find it in a research in 2003 titled "The neurological significance of abnormal natural killer cell activity in chronic toxigenic mold exposures". If this is the case, then I guess 100% avoidance of the mold must be done, and intake of vitamins supporting the recovery of nerves. Ever heard of how B12, B-complex, and D vitamins helps with CFS?
I would think that it if mycotoxins was causing CFS, it should came in gradually. But of course, you shouldn't rule it out as direct cause. What should be considered as well is, the impaired NK cell activities might be causing something else, leading to acute onset of CFS.
If you had invasive fungal infection, you will already be in ICU, critically ill. Unless its mucosal fungal infection due to impaired NK cells activities. But of course they had their own symptoms, e.g. oral candidiasis can be seen, digestion issue or abdominal distention with intestinal candida, etc. I assume the antifungals does nothing to you, except dizziness as its side effects.
Vagus nerve doesn't span across arms and hands, so I doubt the barracuda attack has anything to do with this.
And I think your teeth are fine, I would be surprised if they still do amalgam fillings these days. I assume they put in white fillings? Those seems okay.
Normal WBC could suggests that this is non-infectious in origin. Unless its really a fungal infection which triggers a different immune response. I would skip the infectious disease doctor and find a good neurologist.
CFS is a very complex illness and I understand why doctors have problem diagnosing, let alone treat it. And you must be joking dude, CFS sufferers are the most intelligent patients of all illnesses!
Also, you seem very sharp without being depressed, which is great, so keep up the good work!
dentalcfs
Posted
So, first of all, no more mold exposure until the rest of your life.
Your immune is overreacting to the mycotoxins, and at some point reaches and damages a portion of your vagus nerve, the tenth cranial nerve. Your missing digestion symptoms suggests that the damage is on the local branch nearby your lung, thus it does not affect the branch that goes to the digestion.
Nerve damage is not a very good news though, recovery could take a very long time, if at all. Ever heard nerve damage due to tooth extraction healing only after 9 months?
So at this point, your age and supplementation will be the important factor for recovery. I've found NADH supplementation and Lions Mane mushroom to specifically support neuroregeneration. You can speak to a neurologist regarding this and see whether he agreed, or instead, telling that my hypothesis is a crap
artistmike travis13
Posted
I'm very sorry to hear what you've been through over the last nine months, it can't have been easy.
You say that " It's difficult for me to transition into a sedentary lifestyle when so much of my life has been surrounded with physical activity. " and I suspect that nearly everyone on this forum has said that in the early stages of their illness. I'm ex-army, and that's the serious front line type of soldiering where my standard of fitness was of the highest order. I've indulged in many sports, some at quite high levels so yes, been there done that...
Not being able to accept that this illness can be uncurable may be your downfall. It is not possible to exercise or fight your way fit from CFS, quite the opposite and every day you attempt that you are doing yourself more damage and lengthening your illness.
You can accept that or suffer the consequences. Doctors are not experts in this condition, none of them are and there is no known cure. your fellow sufferers know far more than them and as someone who has had this for fifteen years, I can tell you it's hell and if you make it worse, you'll get to find out just how bad it can be.
My apologies for telling you bluntly how it is, but on the positive side there is your age which does give you a far better prognosis and if you listen to the advice given here on pacing, resting and learning to listen to your body instead of dictating to it, you stand a good chance of improving.
It's common to believe that in life to improve our health we need to "do something". With CFS, if that's what you have, you'll find the reverse is true, you need to learn to do as little as possible.
I do wish you luck and sincerely hope that you get a more curable diagnosis than CFS, but if that's what it is, take the advice of fellow sufferers. We've all tried to fight it and learned the hard lesson that that is not what it takes... You'll get all the help possible here so best of luck ad remember, the fable of the Tortoise and the Hare is one that holds well for us CFS sufferers
travis13 artistmike
Posted
My problem to is that I don't know how to pace, rest, or listen to my body. I have began to meditate but it's my personal identity being tied up in going balls to the wall all the time, resting is not enjoyable to me. I have been working with a therapist to accept that my body needs rest. It's very difficult when I don't have a prognosis, timeline, or even a basic idea of how I should deal with it. There's no blueprint in this treatment. Does it get better? How long does it take? How do you stay healthy and fit without exercise?
artistmike travis13
Posted
The imprisonment of CFS, for that's what it is similar to, takes a huge mental adjustment. Forget what you were, what you were capable of and what your aspirations were, they have now inevitably changed totally, for now at least, and the future, for now, is an unknown land.
Cut all activities that are not vital to your life down to the absolute minimum for now until you can achieve a plateau that excludes the all too easy state of 'boom and bust' that CFS produces. Achieving that level state is a real achievement that will increase your state of health and a base to move forwards from. All the time that you are going from boom to bust, you're doing too much.
Yes, resting isn't enjoyable for any of us but it's important to treat that as a vital part of the treatment and to find a way of coping with it. Like many adverse things in life it's better to treat them as a learning oportunity than a problem, thinking positively is always important..
It's also very important to realise that for some things in life, there are currently no answers. I know that goes against the grain, and that's especially true for the young who feel that there must always be an answer to life's problems if only they try hard enough and that in some ways "it's unfair" that there isn't.
Believe me CFS will inevitably teach you patience, it's a very "Zen" experience to be honest and that's the best way to approach it. If you do actually have CFS then from here on in it's part of who you are and it's important to accept and adjust in order to move forwards and that too is certainly possible, ... it's not all doom and gloom, it's just that patience is absolutely vital, there are no short cuts..
...
travis13 artistmike
Posted