Wellness

[LilacTree]

When I got up yesterday morning, I almost tripped over my daughter who was sitting on the floor by the open front  doorway on the phone talking to 911.  She had called an ambulance because she feared she had "sepsis."  This has never happened before, although she has thought she has had sepsis for several weeks now.  I tried to remain calm and I am not sure she was even going to tell me she was going to the hospital.

When she hung up I asked her if she had a fever and she said no, but that she was so weak, she couldn't walk.  They came quickly and asked her dozens of questions.  I could see they were skeptical (and so could she) but they did take her to the hospital which is maybe three minutes down the highway.

My daughter has had chronic Lyme Disease and I have spoken about this before.  She is getting worse and has stopped going to the "Lyme" doctor because nothing he has done has helped her.

I immediately called her sisters to get to the hospital as quickly as possible (my one daughter lives almost 60 miles away).  I did not go because it was obvious she did not want me to, she didn't even want her sisters there, but they went anyway.

They did every test the ER can do, and came up with nothing (as has happened before . . . Lyme does not show up in regular hospital testing).  She does not have sepsis either (which I knew before she left . . . sepsis is the advanced form of MRSA and can be deadly if not treated in the ICU immediately).  One does not walk around with sepsis for weeks.  However, she needed to be told that. 

As soon as the ER doc said they were going to discharge her, her sisters had to calm her, as she really thinks she is dying.  We are going to call an infectious disease practice on Monday and get an appointment as soon as possible.  She has no confidence in them either, but she will go.  Some victims of Lyme do get better on long term sessions of IV antibiotics and she has finally agreed to try that.

My daughter is very sick with something, and she does test positive for borrelia burgdorferi (a Lyme titre), but after these many years feels she has many more illnesses than just that, including meningitis.  The medical community is very negative about chronic Lyme, which has also sent her into a very deep depression (which she does not acknowledge).  The ER doc said she should be treated for the Lyme, but for depression at the same time, or the treatment will not be effective.  This she repudiates, but we all know she is deeply depressed and who can blame her.  When your whole life changes from illness and no one believes you, who wouldn't get depressed?

NJ is slowly getting around to enacting legislation that will finally recognize chronic Lyme as an actual disease.  NY and some other states have already done it.  Thing is her COBRA from her job has run out and she's been in the process to get it through the ACA, but hasn't yet completed it, so she has no insurance.

We will all make sure she gets whatever treatment she needs no matter the cost.  When she came home last night, she looked so defeated, her head hanging down and barely able to walk by herself.  Her sisters helped her get into bed, and my youngest daughter is coming again today.  They will be back on Monday also, our fingers crossed that she can get an emergency appointment that day.

This is so heartbreaking, we all feel so helpless.  Yes, she is very negative and hard to deal with, but that is part of the disease.  She looks ten years older than she is, and feels as though she is on death's door. 

[hoosieroriginal]

First and most important is to get her some insurance (although I think ACA cutoff just occurred).  But call ACA anyway and explain her situation, they may be able to get her insurance. Something is better than nothing at this point if you really want to get her some treatment.  I've never heard that doctors don't think Lyme disease is a real thing - I think they take it seriously if it can be figured out (which is difficult).  Not sure what treatment is available though. 

[sidsmom]

I'm so sorry to hear this, @LilacTree.

I watch this show called 'Monsters Inside Me.'

People who have dealt w/ something for years, but no doctor

can detect anything.   Then finally someone tests for parasites.

There it is.  They get treatment & begin to feeling better.

Many different ways parasites can enter the body

and stay there for a long time.

Is testing for parasites an avenue which she has explored?

ETA: I'm not talking about alternative medicine type of testing,

but a true parasitical specialist within an hospital.

I swear if I'm on my death bed w/ an unknown illness & only

have 3 words to eek out, it's not going to be 'I Love You',

but 'Test For Parasites'.  That show has made an impact on me.  

Hope this helps.

[cherry]

@LilacTree  I am so sorry you both have to go through this. I know how discouraging this type of thing can be

I hope the new Dr .offers some hope ,and she likes them

They said the same thing about Fibromyalgia  at one time. I don't know if it's recognized now, or not. But I knew a woman that had it ,and  was given  pepper cream for treatment. This was  a few  decades ago, and she suffered a lot. But she founda  Dr that treated her

My niece is  being given a type of morphine  from her Dr. It scares me  but , she  has severe pain at times.

However, it comes a goes, unlike what  your poor daughter is suffering.  God bless all of you

[goldensrbest]

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@hoosieroriginal wrote:

First and most important is to get her some insurance (although I think ACA cutoff just occurred).  But call ACA anyway and explain her situation, they may be able to get her insurance. Something is better than nothing at this point if you really want to get her some treatment.  I've never heard that doctors don't think Lyme disease is a real thing - I think they take it seriously if it can be figured out (which is difficult).  Not sure what treatment is available though. 

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I would think she might be on medicaid.

[lolakimono]

@LilacTree

Has she been tested for mold?

[151949]

If she is unable to work and doesn't have insurance she should apply for medicaid and for SSD. It sounds like she desparately needs a social worker, a psychiatrist and an infectous disease doctor.

BTW - people can be septic with any number of various bacterias or funguses not just MRSA.

[LilacTree]

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@cherry wrote:

@LilacTree  I am so sorry you both have to go through this. I know how discouraging this type of thing can be

I hope the new Dr .offers some hope ,and she likes them

They said the same thing about Fibromyalgia  at one time. I don't know if it's recognized now, or not. But I knew a woman that had it ,and  was given  pepper cream for treatment. This was  a few  decades ago, and she suffered a lot. But she founda  Dr that treated her

My niece is  being given a type of morphine  from her Dr. It scares me  but , she  has severe pain at times.

However, it comes a goes, unlike what  your poor daughter is suffering.  God bless all of you

---

@cherry

Thank you Cherry.