• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What did you have ruled out for diagnosis?

Messages
80
when you first knew something was wrong, what were your thoughts? How did you know something was wrong? Did you go to dr right away? When you did, what were their responses and suggestions? What tests were run to finally get to CFS and how long did it take?

I tried working out and suddenly lost at least 1/3 of my strength for no reason. Gained 8 lbs for no reason. Had real trouble staying asleep. Skin dried out. Went to donate plasma and my blood pressure was 170/110 after the week before it was 124/64

I had thyroid, testosterone, Lymes, sleep study, cortisol, brain mri, lupus, b12, ferritin, vitamin d(actually deficiency but fixed that quick with no relief), and some other similar stuff.
Very interested to hear your welcome party.
 

Wishful

Senior Member
Messages
5,632
Location
Alberta
First notice was that I thought I had a flu; the symptoms were identical. Then I discovered that it was a type IV delayed food sensitivity. I managed to cure that after 2.5 years, but the symptoms remained. I assumed it was some extremely rare form of chronic neuroinflammation caused by the daily t-cell activation. After 15 or so years, I finally realized that it was ME. I haven't bothered with trying to get a clinical diagnosis, because I can't see a benefit for the hassle.

You do need tests to make sure you don't have some other disorder. Others in this forum can probably help you decide which tests you should have, and recommend some good specialists and clinics. Do check the diagnosis and treatment sub-forums.

The responses from doctors throughout this ordeal? Dismissive, rude, unhelpful for the most part. A very few admitted they had no idea how to help me. One, when I complained about the suicidal moods, dared me to kill myself (since I didn't have a record as evidence, I didn't see any point in filing a complaint). Dealing with the medical system has not been a pleasant experience.

If you do have ME/CFS, going to doctor after doctor (unless you can find a genuine ME/CFS expert) hoping for help is probably a waste of resources. It is possible that you can find something--drug or supplement or herbal remedy--that can help you to some extent. What other people claim works for them may not work for you, and something that doesn't work for others, or that no one has tried/mentioned, might work for you. How much money and effort you want to invest in such experiments is for you to decide.

Welcome to PR. Joining this forum has been far more useful to me than all the doctors I've been to. A lot more supportive too.
 

Lisa108

Senior Member
Messages
675
My first thought was 'iron deficiency'. Yeah, that would have been simple...
I had some deficiencies (Vit B6 & 12, Vit D) but like you, had no (lasting) improvements from filling them up. Same with helicobacter pylorii treatment.
Thyroid and autoimmune panel showed nothing.
Immunesystem shows multiple infectious agents (mainly bacteria), an immune defect (IgG3 deficiency) and signs of immunotolerance.

I'm on 'doctor marathon' (german descriptive term for prolonged search for a helpful doctor) since 2012.
My GP is the only help so far. He has no experiences with ME/CFS but believes me and refers me to specialists.

At the end of this month I do have an appointment in one of the rare ambulances for immundefects (not in Berlin, though). If that is of no use, then I 'll try some herbal treatments for enhancing IgG3 and killing the germs.

This forum is a great help. Hope it will be so for you, too. For a start, try Hip's Roadmap for beginners:


Best wishes! Lisa

Edit: Completely forgot: also had a neurological panel, consisting of nerve conduction velocity, brain mri and neuro-psychological test. That ruled out MS, dementia, depression, etc.
 
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Messages
80
Thanks for the responses. If I don’t have MS I’m sure I have this. Don’t know what I’d rather have. It does look like with this though there is quite often decent recovery. Obviously this Is all new to me other than being really sick for 16 months.
Again thanks.
 

rel8ted

Senior Member
Messages
451
Location
Usa
Thanks for the responses. If I don’t have MS I’m sure I have this. Don’t know what I’d rather have. It does look like with this though there is quite often decent recovery. Obviously this Is all new to me other than being really sick for 16 months.
Again thanks.
MS was what the neurologist first suspected. Also ruled out lupus and MG.
 

Sushi

Moderation Resource Albuquerque
Messages
19,933
Location
Albuquerque
My first major symptom was dysautonomia. Though I had a lot of hopeless consults over the years, I finally went to a doctor who knew that some patients with mitral valve prolapse also had dysautonomia and that dysautonomia would explain a lot of my symptoms. (He had been an ER doctor and saw quite a few patients come in after syncope or near syncope.) He sent me for an echocardiagram which did show mild mitral valve prolapse. That started me on investigation dysautonomia which was helpful though didn't turn out to be the full diagnosis.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I have lyme disease and co infections. But getting diagnosed was tough. Thanks to the help of this site and others I followed up with the right doctors and had a better idea what to do. Had to get an IgeneX lab test from Palo Alto to get diagnosed with the Lyme after seeing a internal medicine doctor who specialized in vector borne diseases.

Best thing you can do is educate yourself about your symptoms and what you think are some good options in terms of treatments, doctors, etc. And thankfully sites like this and others have very well informed people who are helpful and even know of cool treatments you can try to help yourself with too. Beyond the scope of normal medicine practice doctors.
 
Messages
87
I use to train in the 90-100 mile-per-week range and be a high preforming athlete in my sport. -- not real elite, but local elite range and ran in the elite field in regional races. Then I started struggling with endurance. Over a period of several weeks, my endurance completely dropped out. I was struggling to keep up with slow friends ascending hills. Eventually I was struggling with 5 miles per day slow, wasn't recovering. It felt like I was always running at lactic threshold even though I was going slow. I was sore for days afterward for no good reason. It was so bad I just quit.

I thought I had an "above the neck" sports injury for a few months, but when It didn't go away I had to start looking for a doctor. A few were extremely helpful -- testing for anything and everything. Many blew me off.

The thing is that this manifested primarily as exercise intolerance. As long as I get plenty of time in bed and don't exercise at all, I function fine. I can work, travel, travel for work, and tile a bathroom.

After everything came back negative, our thought was iron deficiency too. my ferritin was low... but it wasn't zero. It responded to oral supplements, and I did a few rounds of oral supplements. Problems didn't go away. I tested positive for EBV IgM. One doctor swears I have EBV, but it doesn't match the virus onset timeline, I tell him him that I think it is a false positive, and he won't listen. My primary thinks I'm nuts.

So, what was ruled out, approximately in order:
  • Iron deficiency
  • all STDs
  • autoimmune diseases
  • endocrine diseases, in particular cushing's/addison's, Sex hormones
  • infectious diseases for EBV
  • infectious diseases for HHV6, CMV
  • neurological diseases
  • cardiovascular disease
  • sports induced asthma
  • lyme disease (multiple times)
  • metabolic deseases
  • and on and on.....
The diagnosis of enterovirus infection was finally made by Dr. Chia somewhat recently, though it doesn't show up in labs. This was made by patient history, physical exam, and process of elimination. .

2.5 years ago, I ran 2:54 in the marathon (which is phenomenal), And last december, I ran sub-19 indoor 5000m (which is good but not great), and 5:23 in the indoor mile (which is a pretty good time for a distance trained adult).
 
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drob31

Senior Member
Messages
1,487
I use to train in the 90-100 mile-per-week range and be a high preforming athlete in my sport. -- not real elite, but local elite range and ran in the elite field in regional races. Then I started struggling with endurance. Over a period of several weeks, my endurance completely dropped out. I was struggling to keep up with slow friends ascending hills. Eventually I was struggling with 5 miles per day slow, wasn't recovering. It felt like I was always running at lactic threshold even though I was going slow. I was sore for days afterward for no good reason. It was so bad I just quit.

I thought I had an "above the neck" sports injury for a few months, but when It didn't go away I had to start looking for a doctor. A few were extremely helpful -- testing for anything and everything. Many blew me off.

The thing is that this manifested primarily as exercise intolerance. As long as I get plenty of time in bed and don't exercise at all, I function fine. I can work, travel, travel for work, and tile a bathroom.

After everything came back negative, our thought was iron deficiency too. my ferritin was low... but it wasn't zero. It responded to oral supplements, and I did a few rounds of oral supplements. Problems didn't go away. I tested positive for EBV IgM. One doctor swears I have EBV, but it doesn't match the virus onset timeline, I tell him him that I think it is a false positive, and he won't listen. My primary thinks I'm nuts.

So, what was ruled out, approximately in order:
  • Iron deficiency
  • all STDs
  • autoimmune diseases
  • endocrine diseases, in particular cushing's/addison's, Sex hormones
  • infectious diseases for EBV
  • infectious diseases for HHV6, CMV
  • neurological diseases
  • cardiovascular disease
  • sports induced asthma
  • lyme disease (multiple times)
  • metabolic deseases
  • and on and on.....
The diagnosis of enterovirus infection was finally made by Dr. Chia somewhat recently, though it doesn't show up in labs. This was made by patient history, physical exam, and process of elimination. .

2.5 years ago, I ran 2:54 in the marathon (which is phenomenal), And last december, I ran sub-19 indoor 5000m (which is good but not great), and 5:23 in the indoor mile (which is a pretty good time for a distance trained adult).


Do you ever think being an extreme athlete puts you at risk of hpa-axis dysfunction?
 
Messages
39
Do you ever think being an extreme athlete puts you at risk of hpa-axis dysfunction?
Hi
Your post seems similar to mine I was 100 miler
Bike rider 3 years ago now if I rest enough I can work in a office no exercise if I go over my limits I get severe head pain and pain in my neck glands, I have no pain anyway else I’ve tried most things then ran out of money know I live in front of a television doing nothing I take depression meds exercise was my life no I have no life let me know if you find any treatment that works
Good luck
 
Messages
87
Hi
Your post seems similar to mine I was 100 miler
I take depression meds exercise was my life no I have no life let me know if you find any treatment that works
Good luck

I ran 2:54 averaging in the mid-90 mile-per-week range. I'm worried this will be the end prognosis. It has only been a year, so I'm hoping for recovery. Current treatment is Dr. Chia's herbal immunomodulator. I'm still on the ramp-up protocol. Then in a few months if nothing happens, my endocrinologist agreed to let me try increasing testosterone. I want my testosterone in the high-end women's range just on the theory that it couldn't hurt anything and maybe just maybe these problems occuring more often in women than men is influenced by hormones controlling our immune system. My testosterone is currently below 20ng/dl and I want to try it around 60ng/dl. (and I just don't want hair regrowth, so I'll ask for dutasteride and monitoring DHT too)