The Evening News
Sault Ste. Marie MI
January 25, 2005

Mystery illness derails LSSU student

By SCOTT BRAND/The Evening News

HULBERT - There is an untapped scholarship, unpurchased books, unoccupied seats in a variety of different classes and an empty bed in a women's freshmen dormitory, because a mystery illness has derailed the plans of a 2004 Newberry graduate.

When the incoming freshmen class arrived at Lake Superior State University last August for the start of the 2004-05 school year, it was supposed to include Hulbert resident Megan-Rose Parish. There was no way, however, that she could attend school in the condition she was in.

"We pulled her out on the very last day," recalled her mother, Ruth Parish.

The family had hoped Megan-Rose would be better in time for her to attend classes during the winter semester. But, when classes resumed earlier this month, it was clear that her dream of studying anthropology would again be delayed.

"It's like if you were to jog for two hours and you were really tired," the soft-spoken Megan-Rose explains, "that is how I feel all of the time. On top of that, I am a walking bruise."

In describing her muscles the words alone are painful to hear - twitching, cramping, aching. The girl who practiced Tae Kwan Do, helped on the 27-acre family farm and could tiptoe around the surrounding fence like a tightrope artist, now struggles to walk many days without falling.

"Yesterday I had perfect balance, but if you touched me I would scream, it hurt that bad," she said.

Her circulation is virtually non-existent as is her short-term memory. Running water and unattended burners, her mother declares, stand as a testament to the memory difficulties. The circulation problems are more readily observed.

"Nice purple toes, kind of this color," said Megan-Rose pointing to a small container of grape jelly while sitting in a local restaurant.

"Her hands and feet are always like ice," said Ruth.

With her limited mobility, Megan-Rose is virtually housebound, but even there she is robbed of the things she used to enjoy. Her black and white drawings - charcoal and penciled designs - were going to be featured right here in Sault Ste. Marie at the Alberta House, but the showing became just another lost opportunity. New creations will not be produced at least in the immediate future, since she no longer has the muscle strength left to draw.

"I can't write, I can't type, I can't play video games," she said. "I could usually read a 200 page book in a day. Right now, I can only read about 10 pages before my eyes start to hurt."

"The only chore she has left is the dishes, and her 9-year-old sister helps her load and unload the dishwasher," said Ruth, quickly adding there are rules regarding the older daughter. "She is not allowed to touch the glass."

It started, Megan-Rose Parish recalls, as just little things.

"I'd think 'I must have slept wrong' because my neck was aching," said the 18-year Hulbert resident. "Except it was every single day and getting worse."

What began last March as some aches and pains quickly became a life-altering event. By the time she graduated from Newberry High School with the Class of 2004, Megan-Rose was no longer even able to attend school. It appeared as though she was getting better over the summer. In retrospect, however, Ruth can see that her daughter was only resting more, taking it easy, so it appeared as though she was improving.

For the family of Megan-Rose Parish - all they can tell you is what the tests have shown she doesn't have.

"They've ruled out MS," said Ruth of the latest round of testing. Lyme disease, lupus, mononucleosis, and fibromyalgia have also been crossed off by doctors throughout the State of Michigan. Without a diagnosis from Newberry, Marquette or the children's hospital in Ann Arbor, the family is now headed for a new location, hoping to identify this ailment.

"All the doctors are doing right now is trying to fight the symptoms," said Ruth. Megan-Rose has approximately a dozen different prescriptions including painkillers, blood pressure medication and muscle relaxants. "We're hoping Marshfield (a medical clinic in Wisconsin) can figure this out."

Ruth has one major priority at this stage - "Knowing the name of the monster that is doing this."

Gordon Simmons, Ruth's fianc�, jumps in, "It's hard to fight when you don't know what you are fighting."

>From their home in Hulbert, the medical facilities of Marshfield are approximately eight hours away - a one-day trip for most families, but not this one.

"She can't ride that long," said Ruth. "The vibrations of the vehicle make everything hurt and she has motion sickness."

Ruth anticipates at least two days on the road when they head out for the Feb. 1 appointment. If there are no answers at this facility, the next stop is the Mayo Clinic in Minnesota.

"They don't take our insurance," said Ruth, "and they want $2,500 just to walk in the door."

With the family needing financial help for lodging, fuel and minor car repairs, a fund has been established through the Soo Co-Op Credit Union to assist with expenses. Donations can be made at any of the local branches of this financial institution.

"We are hoping they can cure her and we won't have to use all of the funds," said Ruth. The Parishes agree the best-case scenario would be to leave the remaining moneys in an account with Soo Co-Op Credit Union to assist other families with similar needs in the future.

As another semester ticks by, Megan-Rose describes herself as "irritated, ticked-off," at the loss of her freshman year. She vowed to show up at Lake Superior State University this August regardless of her condition.

"Come hell or high water, even if mom has to go to school with her," concludes Ruth.

"I'm not planning on that," Megan-Rose quickly counters.

****
Letters to the Editor:
editor@sooeveningnews

****TOIL for Lyme****
T = Teach tolerance
0 = Overcome ignorance
I = Initiate insurance reform
L = Labor for Lyme literacy/advocacy

I got an email earlier about this article asking if I could do anything.. so I wrote to the paper.. and then the computer email they have wouldn't work ... and I lost it all.

Ahhhhhhhhhhhhhh.....

Soooooooooooooo...

I called the paper just now.. and they were happy to hear of the possible connection.. and I am rewriting information for the reporter.. and will send them some stuff this evening.

We can't let this child and her family suffer.

Maybe we can help?

I do hope so.

Thanks again for posting this article.

If anyone wants to say something to the reporter or the girl's family.. please do so here.... and I will forward this link to them.

I could use some back up.. especially if someone already told her NO to Lyme.

And the family could use some hope right about now... I'm sure.

Hey Mountain Girl...

Yea you with the plugged up ears...

Got a doctor contact for her in upper Michigan? If you will email me with some ideas.. I will be sure to share them.

And I will be nice to you for a whole week.

Man.. that's gonna be hard to do though.. hehehe

------------------
If you get the choice to sit it out or dance...

She is about the same age as this young lady.. and maybe she could help her out? Plus they both live in a cold area.

NO.. that has nothing to do with it.. just another way for me to WHINE about this cold weather! HA!

Also.. Tree.. are you out there?

Do you have some links that would help put the lab test problems out in front? Plus your other wonderful ones, of course.

I am a bit strapped for time and energy.. and a brain actually... and I KNOW you can shake, rattle, and roll much quicker than I can today.

TANKS BERRY MUSH!

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If you get the choice to sit it out or dance...

Will you please contact me if you get in touch with the family? We can't let this child slip through the cracks.

There isn't much there, but I sent what I have.

Much love,
M

I read the article, and I was thinking, "I should email that newpaper and see if they could forward a message to the family for me since that girl is around my age (I'm 22)." But now I see that you don't want any of that.

I understand that frequent phone calls would be too much, but I would really suggest not brushing people off so easily. Doctors do NOT know everything. You think you'll get answers at Mayo? I went to Mayo, and got told they have no clue what I have. I have been sick for more than 10 years, and I'm sick of it. That's why I decided to see this through to the end and make sure I either have Lyme or I don't.

Tests are VERY inaccurate. Your daughter may have been tested, but that doesn't mean she doesn't have it. And the most of the medical world is oblivious to what Lyme is really like.

If you want to ignore other opinions, then fine, your daughter is the one ultimately that suffers. Just realize that while doctors can do a lot, they are not gods and they can often overlook things, especially something like Lyme that has so much politics surrounding it.

I understand where her mom is coming from.

I hope with time she will reconsider seeing a lyme specialist.

HI,

I read the article in your paper about the student with a mysterious illness. I, too, have had some of the symptoms she mentioned. I too tested fine on all tests. I saw over 35 docs in my search for answers over an 18 month period.

I was amazed at how limited the medical field was when it comes to things attacking the inside of the body. I look fine on the outside but the inside feels as if I have been hit by a fully loaded semi truck.

I happened to see a doc that was not on my insurance as suggested by the insurance watch dog group for my state.

He asked me if I had been tested for lyme disease. I told him yes. He asked which lab. I told him. I had researched enough to know that not all labs are a like. So, when he suggested I be tested by another lab I agreed.

I tested positive with Igenex Lab on the Western Blot. I then took my tests back to the docs who took my insurance. I also called the Lyme Disease Asssociation for a referral and checked with www.lymenet.org. The same doctor's names came up. The lyme specialist confirmed I had lyme and said he would work with my primary doc to help me get my health back.

I saw over 7 primary docs before I found one who would work with him. Even with the confirmed dx by a lyme specialist, a positve western blot test with Igenex and almost all the symptoms with the exception of the pain in my testicles, I was told I didn't have lyme and they didn't know what I had and to have a nice life.

So, I am not surprised that this student is finding it difficult to receive a dx, treatment and help. I don't know if she does indeed have lyme but I would suggest she contact the lyme disease association, www.ilads.org and/or www.lymenet.org for a referral for a lyme specialist in her area.

I even went to an ivy league doc with the positive western blot. I had read enough about the testing to know how to read the tests myself. The ivy league doc started out good. He said that my state was the second in the nation for lyme disease. And that he was very familar with it since he was an Ivy league doc. When I gave him the test to read things went down hill. He could not read it. He then said he wanted to make sure I wasn't given more than the couple of weeks of antibiotics. I left his office and did not return. I had also researched enough to know that a couple of weeks of antibiotics was OK if the lyme had been caught right away. But, since it took a long time for me to get a diagnosis, I knew it would take more antibiotics than he suggested to get well.

So the title about a mysterious illness is correct. It is a mystery as to why the medical field has such a rough time accepting lyme as a possible dx and stepping out of the box to learn about it.

Good luck.

I'll have to take a bet the poster that responded here was NOT the child's mother. Just a guess...

1. In the article it said...

"Ruth has one major priority at this stage - "Knowing the name of the monster that is doing this."

Anyone who really wanted to know would not simply discount advise coming from those who have been in their shoes. They would double check and triple check ... and not act so all fired knowing after all this time. They would WELCOME all advise and follow through.

2. They said.. in the post here.. "WE do NOT believe that OUR doctors live under rocks."

Anyone who has been run around for that long with no answers.. and has a child who is suffering and is taking tons of meds to cover up symptoms... and all the while is getting progressively worse in the process...

And someone who is in need of money to pay for the trip and medical expenses after all they have been through, would have figured out by now that something IS wrong with the doctors... and that the doctors DON'T know everything.

3. We have helped too many folks in the past when things like this show up. NO ONE has ever been that disrespectful back to us when help has been offered for a child. No one.. ever. Mother's don't do that.

And the poster is using the "..." like some of us do. NOT normal for a new poster.

4. Anyone who has genuinely checked out Lupus, Fibro, etc. sites would know that the Mayo Clinic has a horrible reputation for helping folks with these conditions and wouldn't consider going there much less say they were thinking about it.

Soooooooooooooooo.......

I will still offer assistance if called upon... as I know you all will. Hopefully the real mother will respond.. and if she doesn't.. at least maybe she will check out the possibility with someone who knows Lyme before her daughter is permanently disabled for life.

We can pray for the family for now and hope the real mother will do the right thing.

Thank you all for caring and wanting to help.

You are so special.

PS.. Mountain Girl.. got the email. Thanks!

I will pass it along IF the mother or the newspaper contacts me for it. I have already heard back that the newspaper got the 4 emails I sent with info, were pleased, and will pass it along to the family.

------------------
If you get the choice to sit it out or dance...

I know, as a mother, that I'd be so GRATEFUL if people saw an article on my child's health and tried to help me.

Megan's symptoms are just like mine and similar to so many of us on Lymenet. Memory, concentration problems, word and name finding problems - left on burners, keys in the fridge, water not turned off, walk into a room and forget what I was going to do, re-read the same sentence 5 times, switch from one show to another and then totally forget what the heck I had just been watching, etc. Muscle twitches, muscle spasms, muscle cramps, stabbing pains, electric shock pains, charlie horses all over the body, joint pain, pulled muscle pain, flu ache pain, stiffness, etc. I have bruises everywhere and I have no idea how I got them. Some of them probably aren't even bruises. Clumsiness, dizziness. Exhaustion, problems sleeping and when I do get enough sleep, I'm still exhausted like I didn't get any sleep. My limbs feel exhausted and it is a chore just to pick up my feet not to trip. Etc, etc, etc. Bet the visual problems have started or will start soon.

All I can say is that Megan's mom needs to looking into the chance that it could be Lyme HERSELF instead of taking other people's word that it isn't Lyme and believing that the negative tests are correct.

Of course, 2 yrs ago, I also thought that when the doctors told me 'this isn't Lyme', I believed them. When I was told, 'we have tested you for Lyme and your tests (several, by the way) were negative', I believed them. When I was told that my symptoms were 'not Lyme-related', I believed them. When I was told that 'I didn't have a rash and didn't remember being bitten by a tick, therefore I did not have Lyme', I believed them.

It was when I had gone to over 10 doctors and specialists and was told that I might have MS (ruled out), I might just have allergies, Rosacea, Sleep Apnea, GERD, a virus, etc...I started to worry. When the doctors started handing out anxiety drugs like candy, I thought - maybe I am crazy or the doctors have absolutely NO idea what is wrong and prefer to blame me.

When I was told that I had Fibromyalgia 'but most of my symptoms were NOT Fibromyalgia-related' I finally got off my ass and decided that I needed to figure out what was wrong with me MYSELF instead of relying on doctors who knew nothing.

More than 13 different doctors and specialists and almost every test possible, here I am.

Thank the Lord that I found Lymenet. This is the reason I'm not as sick as I was and this is the reason I was finally diagnosed and this is the reason I am finally being treated and this is the reason I was able to stay sane and this is the reason I will ultimately beat Lyme.

Lymenet gave me the knowledge I needed to confront the infectious disease doctor (who supposedly is a specialist in Lyme) when he told me that if I did indeed have Lyme, I would be dead from it by now, that I should have had a rash if I had Lyme, that if I had Lyme all the tests would have been positive, that the only true test for Lyme is a spinal tap, etc. He was extremely rude to me the entire appointment and when I finally disagreed with him and told him he was wrong he told me that I was wasting his time, that he had patients who 'really' needed him, that this was all in my head, etc. It was horrendous and after that, I realized that the majority of doctors don't know crap about Lyme, even the ones who say that they do....

It is amazing how little doctors know about Lyme. How they think they know the right information and they have absolutely no idea what the correct information actually is!!!

The sad thing is, my little sister went through this same exact thing her senior year of school (years ago). Almost the same exact symptoms. She missed over 5 months of school and almost didn't graduate. We took her to so many doctors and specialists and were given the same runaround that I've gotten these past 2 yrs - asthma, allergies, sleeping problems, anxiety, she just didn't want to go to school, she was rebelling, she needed to eat more, etc, etc. All the doctors, all the tests - and nothing and noone helped her. She thought she was dying, yet we kept being told that nothing was wrong with her, that they couldn't find anything wrong.....

It wasn't until I found Lymenet, that I put 2 and 2 together and realized that my sister had had the same exact symptoms back in highschool! It was a revelation to me. Finally, everything clicked and made sense in a world that had not been making sense in a very, very long time.

I hope that Megan gets the correct diagnose soon.

I hate knowing that some other child is going through this right now. It is a tragedy.

I hope Tincup is right. I hope the poster,MegansMom,was someone else. I hope Megan's real Mom will heed our messages of genuine concern for this girl. Some of us have seen as many as 15 or more "specialists" and it took us years before being diagnosed. In my case no doctor suggested lyme.......a friend who had lyme did!

My grandson who was losing his vision was examined by some big guns from Children's Hosp. in Boston. They looked for a torn retina...a brain tumor...and when all was negative and it was suggested that this child might be looking for attention...it was his Grandma who diagnosed him with lyme.
I can still see the look of utter astonishment on that doctor's face when I made that pronouncement!

He saw an LLMD...and sure enough...his Grandma was right! And that doctor got a
letter from me which I will never regret writing!

Sorry....I tend to get carried away.

You said..

"That is Megan's Mom. There's no doubt."

If that is true... heaven help that little girl.

My bet is that Megan-Rose has chronic Lyme, and/or Babesiosis and/or Bartonella and/or Ehrlichiosis. My guess is that an EBV test would possibly show something at this point too.

And if Megan-Rose happened to be an outdoor person.. or live in an area where there is a good population of deer... well.. I don't even want to think of that possibility.

Let's just say I can put away the crystal ball if that is the case.. cause it would be so obvious this is what is happening that I wouldn't need it.

And as we have done here in other rare cases...

I will offer to pay the fee for one office visit to a LLMD to have her checked out completely. Her tests can go to MDL since the family has insurance that should cover them there.

So.. an offer is on the table.

And I pray this post just cost me some money.

We must give the children EVERY chance available. My heart breaks at the thought of anything less.

PS... To all of you who replied to this post...

THANKS!

You are very kind. It is heart warming to see others spend their limited time and energy trying to help a stranger.

I think this is the first time I have ever seen someone post here to say they didn't want our help.

But don't be discouraged... let's keep up the excellent work helping folks who want it... which you all are sooooooooo good at doing.

Don't feel guilty about posting this story!

All of us have a very genuine concern for ANY child that is sick and is not being diagnosed correctly - whether it is Lyme or something else.

Many of us have sincere sympathy for, not only the child, but also the parents - since we know what it is like to see a child so sick. We know what it's like to go from doctor to doctor, praying for someone, anyone, to help your baby.

The chance that this girl has Lyme is VERY high - as we all know.

People just think that doctors know everything. They think, just because they saw the best specialist or went to the best hospital, that those doctors know what they are doing.

We think that if a doctor says the test was negative, they must be right. After all, he is the doctor and we are the patient. He went to medical school and we did not. Little do most people realize that we have to inform ourselves better than the doctors when it comes to Lyme.

It takes a very long time to finally realize that the way you were brought up concerning doctors is NOT true! I thought that doctors knew everything, that they were there to make you better when you were sick. That they knew what they were doing or talking about. That they were above making normal, every day human mistakes.

You begin your quest in a world where a doctor misdiagnosing you or making a mistake or just not knowing the truth just doesn't happen - at least not to you or your family.

We just want to duck our heads into the sand and pretend.

Going through Lyme, you soon hit reality - or reality hits you.

As much as doctors want to cure you, if you don't go to a LLMD (Lyme Literate Medical Doctor), you are sticking your head into the sand.

But, we all know how long it takes to finally come to terms with this truth. It can take a very long time. And you basically are left to your own devices to find out the truth about Lyme AND to find your own LLMD that can help you.

Let's just continue to pray for this child.

I know so many other mother's can agree with this poem.

i couldn't sleep again last night

his body a small prayer

in the space next to mine

his brow hot

in his sleep he murmurs, "no..."

i couldn't sleep again last night

his teacher called to apologize

she had to remove him from the class today

everything had seemed okay

("he's sooo bright, by the way")

when, out of the blue,

he began to sing a melody

and then couldn't stop

he evidently got quite upset

but finally...

just laughed it all away

it was an inside joke you see,

"I can't see my head and my mouth is too

small for the words i need!"

I couldn't sleep again last night

when i slipped out of bed into the darkness

and crept to my library of papers

sifting through them

like a Midas searching for gold

trying to find just the right words

to give him one more day to be

just another lamb in the fold

sometimes i can't sleep at night

when i feel his fate there

right in the palm of my hand

balanced ever so carefully

reflecting back all my hope

like a fragile pool of mercury

quote:

---

Originally posted by JillF:
Anything new about this?

I sent an email and never received a response...

---

Hey Jill,

Last I heard the family was going to Marshfield, WI. They have a huge hospital there,which is as renowned as Mayo's. Of course, they can treat anything there, but lyme. Our son was there for a week, and they thought he had some type of Barr virus. They were clueless as to lyme, and their crappy lab missed it as well. Couldn't find used cereal boxes in a landfill.

A complete waste of time and money. Their next stop was Mayo's if Marshfield doesn't diagnose it. Of course, this is another complete waste of time and money, as these Ducks are clueless as well.

I provided the name and number of our LLMD, and can only hope she uses it.
Unfortunately, in speaking with the Mom, the Ducks have her pretty well propagandized against lyme. She almost certainly has lyme, but they haven't diagnosed it yet.

The mother made it plain in no uncertain terms that they were sick and tired of all phone calls and people trying to help.

My son had two negative lyme tests, and the lady that heads up the WI. Lyme Foundation called, and I listened intently to what she had to say. Ultimately, I utilized her advice and got my son diagnosed and treated.