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    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 do I take to my doctor?

Messages
7
I have yet to get a diagnosis but I am feeling like I have CFS. I am wondering what all I should bring to my doctor as far as history and symptoms to suggest this as a possibility. I will finally have health insurance next year so I can pursue this. I will list my symptoms as they have added up over the years to see if others agree with my assumption of CFS and which symptoms are related. I’ll try to make it as concise as possible.

Infant: spinal meningitis

Age 4: Lyme disease: tick was the size of a ladybug when pulled off the back of my neck, got bullseye rash, swollen achy joints, high fever.

Childhood: terrible digestion with frequent stomach aches, constipation, and diarrhea. Mostly solved with daily probiotics as adult.

Frequent illnesses like sinus infections, laryngitis, flu.

Teens: fatigue began with needing to nap often and always feeling tired.
Terrible periods, now know that’s endometrial hyperplasia which will be treated next year.
Often have tender armpits that sometimes swell.
Frequent Charlie horses and foot cramps.

Adulthood: depression, mood swings.
Have had three pregnancies all delivered via c section.

Tenosynovitis in both wrists, daily collagen helps.

Numbness/tingling in mostly left arm, sometimes right and legs very occasionally.
Taking a while to fall asleep, waking in the middle of the night.

Forgetfulness like forgetting why I enter a room or if I applied deodorant, etc. Losing a
sentence as soon as I start to say it, forgetting words and having to pause to finish a sentence.

Days where I have fever symptoms with no elevated temperature.

Sometimes dizzy when I stand up too fast.

Sometimes have a sharp chest pain that makes it difficult to breathe in without pain. Goes away within a minute.

Tests I’ve had done within the last year: CBC fine. Metabolic panel fine. Vitamin D was low now fine. Antinuclear antibodies negative. Thyroid fine. MRI of brain and of spine both clear. Neurologist exam fine.

What else should I ask to have done to get a clear diagnosis? Thank you for reading all this.
 
Last edited by a moderator:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
It depends on what your goal is. If it were me, I would want treatment that would reduce my symptoms, improve my function, and help me get better. Diagnoses (do you mean ICD 10 codes?) are what insurance companies or governments use to justify treatments.

The problem with a diagnosis of ME/CFS (G93.3, or the more obsolete R53.82) is that there aren't treatments that they justify.

What is far more useful is a list of ICD 10 codes that justify treatments that help.

The best way to do this is to list all of your symptoms in a list, grouped as well as you can (digestive, nervous system, cardiovascular, etc.), along with a list of abnormal test results.

If your tests have been normal, perhaps you haven't had enough investigation done to identify your problems. In that case, perhaps a list of tests you'd like to get done that might be helpful. These might include things like:
  • Immune function - NK cells, Immunoglobulins with subclasses, T cell or B cell panels, antibodies
  • Infections - Lyme and its coinfections, herpes family viruses, other viruses you may have been exposed to, fungi/mycotoxins/Candida
  • Endocrine - full thyroid panel, not just TSH, 24 hour saliva cortisol, sex hormones
  • Nervous system - Dysautonomia tests, nerve conduction tests, small fiber neuropathy
  • Structural - cervical cranial instability, herniated discs, etc.
  • Mitochondrial function
  • Comprehensive nutrient testing - antioxidants, B vitamins, homocysteine, amino acids, lipids, minerals
  • Heavy metal or chemical toxicity, iron panel
Best wishes...
 
Messages
7
If your tests have been normal, perhaps you haven't had enough investigation done to identify your problems. In that case, perhaps a list of tests you'd like to get done that might be helpful. These might include things like:
  • Immune function - NK cells, Immunoglobulins with subclasses, T cell or B cell panels, antibodies
  • Infections - Lyme and its coinfections, herpes family viruses, other viruses you may have been exposed to, fungi/mycotoxins/Candida
  • Endocrine - full thyroid panel, not just TSH, 24 hour saliva cortisol, sex hormones
  • Nervous system - Dysautonomia tests, nerve conduction tests, small fiber neuropathy
  • Structural - cervical cranial instability, herniated discs, etc.
  • Mitochondrial function
  • Comprehensive nutrient testing - antioxidants, B vitamins, homocysteine, amino acids, lipids, minerals
  • Heavy metal or chemical toxicity, iron panel
Best wishes...


I did have a Herpes family test a few years ago that was negative. Would Lyme still show up after 30 years?
 
Messages
7
Also, the reason I want to get a diagnosis is more for peace of mind and to know what’s going on. My body doesn’t react well to medicine and is often prone to dependence so I wouldn’t treat with many medicines but at least I could take a doctor’s diagnosis to a holistic provider and get specific treatment for that.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I did have a Herpes family test a few years ago that was negative. Would Lyme still show up after 30 years?
There is no such thing as "A herpes family test." If you were tested, it would have been for igM, IgG, and/or IgA antibody titers or PCR (polymerase chain reaction, or DNA) for:
  • HSV1
  • HSV2
  • Zoster (chicken pox snd shingles)
  • Cytomegalovirus
  • Epstein Barr
  • HHV6
  • HHV7
If untreated or inadequately treated, Lyme can still be there. I have a friend who found that Lyme was the cause of 20 years of her weird symptoms.
 
Messages
7
There is no such thing as "A herpes family test." If you were tested, it would have been for igM, IgG, and/or IgA antibody titers or PCR (polymerase chain reaction, or DNA) for:
  • HSV1
  • HSV2
  • Zoster (chicken pox snd shingles)
  • Cytomegalovirus
  • Epstein Barr
  • HHV6
  • HHV7
If untreated or inadequately treated, Lyme can still be there. I have a friend who found that Lyme was the cause of 20 years of her weird symptoms.

Not sure which specific Herpes test I had. The doctor said it would determine if I had genital or oral Herpes and they were negative. I had chicken pox as a child.
I did a two week round of antibiotics for the Lyme and all my symptoms at the time went away. Have not had a blood test for it since the initial one 30 years ago.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Oral herpes is typically HSV1 and genital is typically HSV2. It's easier to kniw if these have activated as you would likely have an our break, which is hard to ignore. Not everyone has these, of course.

More insidious are the other herpes viruses. Most people have been exposed to them, and as with HSV1 and HSV2, once you've had them, they remain dormant in your system, waiting to reactivate if your immune system is weakened or under stress. Many of us have found we have chronic, low level Epstein Barr, Cytomegalovirus, HHV6, etc infections, that are sappping our energy, making us miserable, and, if we are truly unlucky, causing autoimmunity - many of us have weird antibodies causing a whole bunch of weird symptoms like high or low blood pressure, breathing difficulties, exercise intolerance, neurological symptoms, etc.

This is why you want to ensure you have a complete set of tests, which it sounds like you haven't. Then, interpreting them can be controversial - high IgM is for an acute infection, which it doesn't sound like you'll have, so ideally, you want PCR tests, which look for DNA or at least the full set if antibodies for each test...for Epstein Barr, there EBNA, EA, and VCA - some of us have impaired reactions due to our immune syayems, so without all of them, you may think you don't have it, when you actually do (this is what happened in my case - I actually did have Epstein Barr makung me very sick when I didnt think I had it and several doctors missed it).

As for the Lyme, my daughter was on antibiotics for 8 months, but still had it anyway, 2 years later.
 
Messages
7
Thanks for your insight. I will write these down and talk to him about which ones we should look into. I understand a lot of a CFS diagnosis is via elimination. I want to try to get on top of this ASAP so I can manage the symptoms before they get ahead of me. I already have issues getting things done around the house and I don’t want to make it worse.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You are very welcome. You might be interested in this which was posted today which describes the herpes virus problems in more detail.

http://simmaronresearch.com/2018/11...ting-chronic-fatigue-syndrome-mecfs-diseases/

My immune system didn't react properly so I has 2 infectious disease doctors blow me off before an ME/CFS specialist ran the right combination of tests to identify the viruses. Treatment has helped tremendously.

My body doesn’t react well to medicine and is often prone to dependence so I wouldn’t treat with many medicines but at least I could take a doctor’s diagnosis to a holistic provider and get specific treatment for that.
There is a time and a place for medications. I tried all kinds of holistic approaches with an excellent naturopathic doctor before he started prescribing conventional medications - my immune system was too weak to fught otherwise, even with natural immunomodulator and boosters. I do actually use natutal treatments as much as I can, but wouldn't have made progress without modern medicines. We need a full box of tools to draw from selectively to fight this illness.

If you have problems with medications, you may want to look into inert ingredients which may affect you. Corn, milk, and gluten, which I'm allergic to, are in most pharmaceuticals. Getting the drugs I need compounded has allowed me to take them safely.

Other areas to look at might be mast cell activation syndrome, nutrients being depleted by drugs, mitochondrial damage from drugs, and certain genetic issues.

. I understand a lot of a CFS diagnosis is via elimination
This is a fallacy. Most of us have one or (more likely) comorbidities. In addition to various infections, immunodeficiencies, and autoimmunity, POTS, MCAS, and EDS are fairly common. Plus oxidative stress and mitochondrial dysfunction.
I want to try to get on top of this ASAP so I can manage the symptoms before they get ahead of me. I already have issues getting things done around the house and I don’t want to make it worse.
Good idea! :thumbsup:

Best wishes!:hug:
 
Messages
7
There is a time and a place for medications. I tried all kinds of holistic approaches with an excellent naturopathic doctor before he started prescribing conventional medications - my immune system was too weak to fught otherwise, even with natural immunomodulator and boosters. I do actually use natutal treatments as much as I can, but wouldn't have made progress without modern medicines. We need a full box of tools to draw from selectively to fight this illness.

If you have problems with medications, you may want to look into inert ingredients which may affect you. Corn, milk, and gluten, which I'm allergic to, are in most pharmaceuticals. Getting the drugs I need compounded has allowed me to take them safely.

I’m not completely against modern medicine in any way, I know it came across confusing. My body becomes dependent on things very easily (pain medicines, antidepressants, etc) so I try to avoid as much as possible. I hate the feeling of withdrawal when I quit something and often the side effects I get are worse than what was a problem to begin with. I’m hoping I can get some relief with chiro or acupuncture.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
For pain, you might look into CBD oil, and depending on the type of pain, trigger point injections, cranial sacral therapy, Feldenkreis, prolozone, and weightlifting. It really depends on the cause
...
You might also want to take a look at the book "Drug Muggers" by Suzy Cohen.