My daughter - 21 years - has such excruciating pain she has been crying and screaming for days and no-one will help her.
She is in terrible pain 24/7 since last year, but this is the worst ever.
Her LLMD can't precribe controlled substances across state lines.
Her local "supporting doc" won't prescribe what the LLMD suggests because
"It is too strong, she is just a young woman, she can't possible function on that level of meds!"
This is while she is crying and rocking in the "supporting" docs office.
I ask how spending her life crying and writhing on the floor until she looses consiousness is any better "functioning".
The supporting doc just shrugs her shoulders.
My daughter has been rejected from 3 pain clinics because "Lyme" is on her records.
The emergency rooms reject her at the door. "There is no such thing as chronic Lyme."
I really thought that when we figured out what it was we would be able to help her.
But we can't. She is going to die.
I know that sounds melodramatic and attention seeking.
But that is how I feel.
And I am practically useless.
I am so overwhelmed, depressed, hopeless I can hardly function myself.
I can't remember anything.
I can't keep things straight.
I recently posted a question here and someone said they gave me the info before.
What is wrong with me?
I am exhasted all the time.
I could sleep all day but can't sleep at night.
I used to feel like I could do anything.
That I was up to any challenge.
Now I can hardly remember my own phone number.
Seriously. I couldn't remember my own phone number the other day.
I can't remember things EVERYONE can remember.
I can't remember words. So have this wierd little trick where I look around in my brain and I see how the word is spelled, then I can say it. What is that all about? It is too hard to remember a word but I can picture the spelling
My other daughter, 16, has noticed. She has started prompting me in the mornings about what we have to do, asking me in the afternoon if I remembered this appointment or that errand.
I feel so stupid!
I used to run a multi-million dollar compny!
I was the vice president of the board of a large charitable organization!
Now I can't remember my own phone number!
I can't remember appointments I have written on the calendar because I forget to look at the calendar!
I am afraid I am not up to the task.
I am afraid I am failing her.
Is this just depression? How could I be this disfunctional?
My real fear is that I have lyme too.
I have had symptoms since at least a year before she was born.
I've had the rash several times.
I was a wilderness guide and have had literally hundreds of ticks. Just part of the job in the 70's. End of the day we would pick ticks off ourselves.
Crap.
On two occations I was hospitalized and bedridden - once for almost a year - with a mystery illness.
I thought I cured myself by stopping the chemical meds and loading up on probiotics. I know I stopped the symptoms, but maybe it was just suppressed?
Her LLMD said all her medical problems since birth make him suspicious of congenital Lyme.
I'm afraid it is not depression but my brain being eaten away.
Or maybe I just see Lyme every where I look?
How can I help her if I can't function intellectually?
How do you guys pull yourself out of the despair and hopelessness?
Nicole's Mom
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Sounds like you need to be tested Mom. And see a LLMD. Reality sucks, but that is what I am reading in to this.
My heart breaks for your daughter and you.
Best, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Get tested, deal with the reality, as bad as it is. You already know in your heart what your body is telling you. Second, take care of yourself as best you can so you can help your daughter.
I have been where you are, only with hubby. So sick, on death's door with no options. ER was out, LLMD without hospital privileges in any state, pain clinics don't believe his level of pain and on and on.
Take it one hour, one minute at a time if that is all you can do.
I am sick every time I read another story that is the same story over and over. When will it end.
I am sorry for your daughter's pain and the absolute crisis in lack of medical care.
I know this doesn't help much, but I wish you both better days ahead.
One minute at a time ....
Wizard
Posts: 252 | From USA | Registered: Sep 2003
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posted
I can't afford to get tested and even if I could I can't afford treatment.
I can't afford my daughters treatment so I can't afford to diminish what she gets by spreading some of the money to me.
I think I am going to see if I can get antidepressants.
Insurance will pay for that.
Maybe that will help until I can get my daughter to a better place.
My mom is coming to help.
Thank God for my parents.
Just having some emotional support will be good.
Have there been other people this sick, this out of financial options who have gotten well?
I know she is just hanging on for me and her other relatives, that she wants to kill herself but doesn't want to cause us that pain.
She says "Mom, you know I love you so much and I don't want to hurt you but I can't live like this anymore."
"I am only hanging on because I don't want to hurt you and you keep telling me we can fix it."
"But I don't believe any more that it can ever change."
"You can't keep asking me to suffer like this with no hope."
Sometimes I am desperate to give her enough hope to hang on so I can find the answere.
Other times I feel I am wrong to make her suffer like this when there doesn't seem to be an answer.
Nicole's Mom
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Mom,
I have not read all the responses here.
I was also told by two LLMDs that they couldn't write a prescription for controlled substances across state lines, but whoever said that was wrong. As long as the physician is licensed in the state where he practices he can write a Rx for a controlled substance.
Call your pharmacist and ask this question. That's how I found out it was legal.
Another suggestion is to fill the Rx from your LLMD in town, before going home.
You must take care of yourself. I KNOW you know this. I KNOW this is easier said than done! Make an appointment with your daughter's LLMD and get evaluated. The only way to be able to continue taking care of your daughter is to take care of yourself.
Don't put off your evaluation, or treatment, if you need it. This stuff can only get worse...drastically worse. Please consider your future.
Don't let this illness rob you of your peace.
Seek counseling, do something fun just for yourself once in a while, do something fun with your other child/children once in a while.
This is a marathon, not a sprint. Slow & steady wins the race.
Have you found a pain specialist? You may have to go through several before you find one that is willing to try whatever works for your daughter. We're on our fourth one, and he's a blessing. He may not have solved our pain problem, but he cares about the person and is willing to keep trying different combinations.
My step-sister was in your same predicament years ago when my neice was a young teen. She went undiagnosed for over 10 years. There were times they contemplated murder/suicide.
Post the suicide hotline number in a prominant place.
Hang in there. You're in this for the long haul. Give yourself some TLC before you lose your sanity. Forgive yourself because you can't be Super Mom. Be gentle on yourself.
We care about you and Nicole. Please keep in touch.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I wish I could say more, but I think the advice given by hshbmom is the best. All I can say is hang in there, do something for yourself, too. Antidepressants might be a help. Ann -OH
I don't know if it was therapeutic to get it out or I just feel less isolated to read your responses.
Probably both.
I am so afraid of making a wrong decision, choosing the wrong doctor or the wrong treatment.
It is all up to me to decide who and how she is treated.
All the choices or treatment options are conflicting and I don't know which to choose.
I have been going back and forth between continuing with allopathic or switching to alternative/natural.
I woke up today and "knew" I would get a message today.
I went to a seminar for work and the woman leading it is heavily involved in the the natural/holistic health care, had all these contacts and knowlege.
I took that as a sign.
But then I question it. All my education and training is not in "getting signs" or making decisions based on "messages from the universe".
I am a researcher who believes if enough knowlege is gained a good decision can be made.
But my research and belief in the power of science and rations thought/decisions is getting me no where.
Did I get a sign from the universe and if I don't follow it I am walking away from the miracle that will save my daughter?
Or am I a mother made so crazy by desperation I have lost all rational thought and now believe the universe or God or something is giving her personal "signs"?
Were is the Magic Answere Book when you need it?
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Nicoles Mom, There are ways to reduce the pain that do not involve narcotics.
SSRI's (Selective Serotonin Reuptake Inhibitors) are prescribed for depression, but can also relieve pain.
Serotonin is the neuro-transmitter responsible for feelings of well-being, calmness, personal security, relaxation, confidence and concentration.
In my case, the medication was prescribed to reduce migraines, but it also had the effect of raising my pain threshold, so that the fibromyalgia pain "didn't hurt as much."
Magnesium deficiency will increase pain.
Vitamin D3 deficiency will increase pain.
Inflammation will cause pain.
Omega 3's (fish oil) will reduce inflammation.
Systemic enzymes, like Wobenzym and others, will reduce inflammation.
These are things that you'll have to try out for yourself, unless you luck out and find a doctor who is aware of them. They do know about the SSRI's, but people don't realize that these meds will reduce their pain.
If your daughter is already taking these supplements, please forgive my suggestions, as I'm not familiar with her case.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
She does have a severe vitamin D deficiency. I will see about getting that taken care of. At least that is something the doctor can "see" so should have no resistance to treating.
She tried magnesium years before, but will try again.
SSRI's, seretonin and others I will look into.
Thank you very much for your suggestions.
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Originally posted by Nicoles Mom:
quote:She does have a severe vitamin D deficiency.
From what I've read here, you'll need to supplement with D3, not D2.
quote:She tried magnesium years before, but will try again.
There is so much information about this, books even. This one is easy to read: Common Conditions That May Result from Low Magnesium Levels http://www.ctds.info/5_13_magnesium.html
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Sorry for all the problems you are having and the pressures you are under.
I know how stressful it is for me to make all the decisions for hubby's medical care and I am healthy. For me the one thing that is vital is adequate sleep.
Don't worry too much about making the "wrong" decision. At this point any treatment is an improvement over doing nothing.
As others have mentioned Lyme can be a chronic long-term illness. You will most likely have to change treatment paths more than once before you are thru treatment. Many people combine allopathic meds and herbs -- there is no reason you can't do both types of treatments.
It doesn't have to be an either or decision. In fact hubby sees both an LLMD and an herbalist -- they used to be in the same practice.
Carol has given you some very good advice.
I am going to quote a couple of paragraphs from the forward to the "Beating Lyme" book by Constance Bean.
I also think the issue of serotonin is too widely overlooked in regards to pain. For hubby the alternative supplements of 5-HTP, l-tryptophan and vitamin B6 worked better than the SSRI meds -- but since he had brain inflammation he needed to take resveratrol also so that his body would use the supplements to make serotonin instead of converting them to the neurotoxin quinolinic acid.
Quote -- "Finally, studies have shown that virtually everyone with chronic pain syndrome ends up having Fibromyalgia. After your brain has been bombarded with substance P for long enough, your inhibitory neurons finally give up and run out of serotonin.
(Substance P is made by the pain center in the spinal cord when the pain center receives pain signals. It tells the brain there is pain. In chronic pain syndromes, the inhibitory interneurons get depleted of serotonin and stop doing their jobs of blunting pain signals.)
You now have Fibromyalgia. Every sensory input is not blunted. You react to light, touch, sounds, have sleep disruption, get irritable and moody, and cannot concentrate because your brain is in overload. You have to leave stores with high lighting because you can't stand the lights and the noise.
Your brain is screaming to be protected from all this input because the serotonin fibers have stopped protecting your brain by filtering background noise. These issues must be addressed and fixed if you are ever to return to normal.
Sleep is mandatory to allow your immune system to recharge and make growth hormone. Do not be afraid to take medications to help you sleep! I tell my patients that matrydom does not promote healing. Treat the pain. Treat the sleep disorder. Take tryptophan and SSRI's.
Protect your brain from unnecessary input. Accept the fact that your brain is 'in charge' of your body and you must let it perform its 'normal' functions if you are to get better." -- End Quote
Mom you need to take care of yourself in order to take care of your daughter. If you can't afford tests for tick-borne illnesses then tell the doc that and ask for something simple like doxycycline for yourself. It would be a start. Or try some of the herbs in the Healing Lyme book by Buhner. Remember your daughter is counting on you to be there for her.
Show this thread to your mom. Take advantage of any supportive relatives or friends. Sometimes it helps to get objective input from others.
Ask your daughter for her opinion. Were there any of the docs she liked better than the others? A good relationship with the doc is especially important when dealing with these type of complex illnesses.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Nicole is better today. I had her stop the antibiotics and her pain level went down. When I say down I mean she still has a lot of pain but is not crying and writhing. She took a shower and dressed herself.
Perhaps she was herxing? I can't tell the difference between herxing and just getting sicker.
I have gotten lots of good suggestions from you folks. I am going to do some research, go back over her records and try to see what is what.
Regarding her need for sleep, that has always been a huge issue. She had a sleep study done years ago where they said she didn't fall asleep so they couldn't do the "sleep" study. I am going to schedule her for another as soon as we complete her Canadian immigration which should be shortly.
I am also going to keep better daily records so perhaps I can start to figure out better next time.
I am also going to see someone who can help her detox. She never really did any detox no matter how much I pushed it. But now that she is here with me I can faciltate that happening. I am looking into a naturalpath who has worked with detoxing some Lyme patients up her in Canada.
I think I will also try to be more consistant posting on this site. It really has made a huge diference in how I feel. Not so overwhelmed and hopeless. You guys are great.
Thanks
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Nicole and her mom 
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