LymeNet Flash: fill in PCP told me to "learn to live with it"

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»	LymeNet Flash » Questions and Discussion » General Support » fill in PCP told me to "learn to live with it"

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Topic: fill in PCP told me to "learn to live with it"

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

feeling defeated, my pcp was busy when I called his office and the nurse was concerned for me since my hands were looking strange in color and nails were a little grey so she told me to have apt. with his practice mate and she was ok although a bit forcefulll

and said, "your symptoms are real, but you have chronic illness and it means forever, so you need to accept that this is how it will be the rest of your life" .

I really do try to remain positive every morning and throughout the day while my body tried to tell me to be completely miseralbe and discouraged.

this is a full time job and v hard work!

feeling v sad righ tnow.

also today I was explaingin to someone why I can't participate in something today because I have a"red blood cell parasite" called babesia, thinking this would be good to say to a lay person.

she said" oh I had parasites too- did you ever try a cleanse?" [Frown]

I don't blame her, but when you feel so horriblly it is very hard to not feel even worse when no one seems to understand.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3577 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

hiker53
Frequent Contributor (5K+ posts)
Member # 6046

posted

LisaK—I am sorry you had the experience at the MD.

And I agree no one really understands. It is okay to be sad and let the tears flow.

I know I look healthy so people think I am fine.

But we will get through this. Don’t ever give up hope! [group hug]

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 9178 | From Illinois | Registered: Aug 2004 | IP: Logged |

Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

posted

Tell your doctor of coarse I know it’s a chronic condition but there is such a thing as controlling SYMPTOM SEVERITY to make my life worth living.

Lyme sufferers suffer enough without having to be gaslighted and being treated like cry babies. Wish she could walk a mile in your shoes!

We try to learn something new each day. Wish doctors would do the same. The medical community needs mandatory refresher coarses!

We understand Lisa 💚

Posts: 3027 | From Florida | Registered: Nov 2016 | IP: Logged |

aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960

posted

It's been my experience that people aren't going to understand how sick we really are.

Hiker and BB gave great advice.

Be kind and compassionate to yourself. It's more than OK to feel down because what we go through is hell.

You're not alone and we're here for you LisaK!

[group hug]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 6351 | From Columbus, GA | Registered: Jul 2004 | IP: Logged |

MADDOG
Frequent Contributor (1K+ posts)
Member # 18

posted

I sort of just wait now to go to the doctor,for a couple of weeks because things just go away again.

MADDOG

Posts: 4026 | From Ohio | Registered: Oct 2000 | IP: Logged |

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

good thinking maddog, and I have done that before too, [Wink]

THANKS EVERYONE!

I am kinda sad that she rx me lyme test and it was of course negative so now in my chart "no lyme here"....

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3577 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

posted

Here are some documents to print and take to you doc.

Request these ALSO be included into your chart along side your negative faulty outdated useless false negative Lyme diagnosis.

Reasons For False Negative Lyme Diagnosis
https://www.anapsid.org/lyme/panel/Seronegativity.pdf

Global Lyme Alliance
https://www.globallymealliance.org/blog/when-you-suspect-you-have-lyme-but-your-test-comes-back-negative

“ According to the CDC, a doctor should make a Lyme diagnosis based on your symptoms, medical history, tick exposure, and geographic area. Blood tests can help support that diagnosis, but they shouldn’t be used alone to determine if you do or don’t have Lyme”

Many states now include a warning about false negative Lyme testing results. Here is a sample from Delaware;
https://legis.delaware.gov/json/BillDetail/GenerateHtmlDocument?legislationId=26846&legislationTypeId=1&docTypeId=2&legislationName=SB249

“ Your health care provider has ordered a laboratory test for the presence of Lyme disease for you.

Current laboratory testing for Lyme disease can be problematic and standard laboratory tests often result in false negative and false positive results, and you may not have produced enough antibodies to be considered positive because your immune response requires time and the ability to develop antibodies.

If you are tested for Lyme disease and the results are negative, this does not necessarily mean you do not have Lyme disease.

If you continue to experience unexplained symptoms, you should contact your health care provider and inquire about the appropriateness of retesting or initial or additional treatment.”.

Make sure they include this documentation in your patient chart.
Check your patient portal that your wishes were adhered to and reflect this valuable information. Then you have documentation that everyone is on the same page. (nip any lying in the bud)

Posts: 3027 | From Florida | Registered: Nov 2016 | IP: Logged |

Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

posted

"...your symptoms are real, but you have chronic illness and it means forever, so you need to accept that this is how it will be the rest of your life..."

WRONG. Lisa, don't ever, ever give up or buy into these patronizing, ignorant words. I was told the same thing over and over, but I've been well for over 10 years now.

If it is possible for me to recover, it is possible for you, too.

Posts: 1919 | From Earth | Registered: Jul 2013 | IP: Logged |

LisaK
Frequent Contributor (1K+ posts)
Member # 41384

posted

thanks Bonnie!
Thanks Phoiph!

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

Posts: 3577 | From Eastern USA | Registered: Jul 2013 | IP: Logged |

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