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Lizzie in Ma

By Lizzie in Ma,
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PollyOR

PollyOR

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:grouphug:  Your post brought tears to my eyes.  I feel for your sweet daughter.  :grouphug:

 

My almost 19 year old lost her adolescent years to depression and anxiety.  She's doing better but she still doesn't have an average energy level. She feels like a loser at times because she isn't able to do the things other people her age are doing.  It can be so discouraging when it looks like everyone else your age is moving forward with their lives and you have no energy or you don't feel good.  

 

I'm so glad you have found the help your daughter needs.  

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Kerileanne99

Kerileanne99

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I truly hope her 19th birthday will be a celebration of epic proportions, and that even if it is little comfort at the time, she will be able to see her 18th as a great start on the road to health.

 

I am in a wheelchair with a chronic pain condition, and I think the pain and the inability to ever plan anything from one day to the next are the hardest. Never telling my dd4 big plans in advance because mom might wake up that morning unable to follow through. Hugs to your family, as you are ALL affected:(

 

I will say, after she is doing better, if she is still having pain issues? You might check into an intrathecal pain pump. It has changed my life. Very few oral meds and because it is into the spine I get better pain control on MUCH less medication by orders of magnitude. My pain doctor has done a few for Lymes, so I know it is fairly common.

With any luck she won't NEED meds, but just a thought...

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Lizzie in Ma

Lizzie in Ma

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I am so sorry. Would it be possible for the hive to give her a eighteenth birthday card shower? If you don't mind sending me your address I'd love to send her a card with a little something in it. I know it won't take the place of what you all would like to do. I'd just like to hopefully brighten her day a little. I hope she feels better soon. :grouphug: :grouphug:

 

You are all so dear.  I am so grateful.

 

[ADDRESS REMOVED. Please only send by PM! This forum is open and searchable. POSTERS: please PM the OP for address.]

 

Her birthday is May 15th.

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Dina in Oklahoma

Dina in Oklahoma

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I am so sorry. Would it be possible for the hive to give her a eighteenth birthday card shower? If you don't mind sending me your address I'd love to send her a card with a little something in it. I know it won't take the place of what you all would like to do. I'd just like to hopefully brighten her day a little. I hope she feels better soon. :grouphug: :grouphug:

 

Dear Lizzie ~  

 

My heart goes out to you and your daughter. I truly understand what she is going through as I have a disease that causes similar issues. She will be in my prayers. :grouphug:

 

 

GREAT IDEA Puddles!

 

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Reefgazer

Reefgazer

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Oh, gosh, I am so sorry for our daughter.  I hope she finds relief and recovery soon.  Tell her I'll be thinking of her and wishing her the best! 

 

I actually know 2 people who are in dire situations over Lyme disease because of 1) insurance issues, and 2) the way NYS regulates treatment of the disease (which you are probably aware of if you are being treated in NY), and these 2 things are often combined to create such an impossible situation.  These people cannot get relief or recovery; I'm glad your daughter has found a hopeful solution.  Is there a time-frame for her, as far as getting well and being able to stop/reduce medication goes?

I don't mind questions and I am so very grateful for you all.  I will share our story in the hopes it might help someone else.

I know there are a couple folks on the boards who have been through this and they have been incredibly supportive.

 

Yes, she had it for several years before being diagnosed.  She had positive Lyme Western Blots from 2009 on but as they were negative by CDC surveillance standards, they were marked negative and we didn't know any better.

Now we do.

Her symptoms were diverse and many but included crippling headaches, cognitive issues, processing issues, transient joint pain, stabbing abdominal pain, vertigo, nausea, rashes that came and went, eye issues, night sweats, generalized all over pain, depressions and anxiety issues.  

In 2011, armed with research we went back to our primary care who, literally broke down in tears and apologized.  And she has been in and out of treatment for Lyme since August 2011.

 

This February, her legs and joints got so bad, she couldn't walk well at all or for any length of time.  We finally went to see a Lyme Dr. in NYC.  You may ask why we hadn't, good question,  They don't take insurance and the first visit was $900 with a $3100 lab bill as well.  Nuff said.  I still wish we had done it earlier.  No matter what it took.

 

Turns out, the tests for co-infections are as problematic as tests for Lyme and while hers, in 2009 were negative, like the Lyme, that meant little.  She does, in fact, have Bartonlla and Babesia as well and the trio together were creating absorption issues with the Lyme meds.  She also has systemic Candida from all the antibiotics.  So, now she is in treatment for the co-infections and we are waiting on prior approval for a procedure to put in her port for IV Lyme meds.

 

The thing is, the medications, and the die off from the organisms, flood her body with toxins and make her very ill.

She in in constant pain, light sensitivity to the extreme, cognitive and processing abilities are shot, anxiety through the roof, she is clammy and cold and feels like her skin is crawling.  And other than flushing with lemon water and detox baths, there isn't much we can do for her to help.

 

There is hope, at last.  She is finally seeing someone who knows what he is doing and our primary care is working with him.  He says we can get her to a quality of life state of remission and I believe him.

Just having been in the trenches so long, to have been sick her entire teen years, to lose friends who don't understand because "you don't look sick", to holding her through mini seizures or through the panic attacks, some days we all just feel defeated and down.

 

You guys have no idea what coming back to this post and seeing all your kind words and love mean for us today.  She and I scrolled through the replies and we were both crying.  The understanding and the fact that so many of you took the time to post is a blessing that touched us deeply on a day where we truly needed it.  So, on Rowan's behalf and my own, bless you all and thank you from the bottom of our hearts.

 

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momto3innc

momto3innc

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Lyme is so so frustrating. You have to spend so much money, virtually nothing is covered, and treatment generally makes you worse first. Definitely worth crying over! I have lyme, bartonella, babesia, and erlichea. I am in pretty good shape now. Keep pressing on, keep using a great LLMD. I pray your daughter has a wonderful day despite it all and that all the treatment that is needed it figured out and effective. It really can get better!

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Lizzie in Ma

Lizzie in Ma

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Oh, gosh, I am so sorry for our daughter.  I hope she finds relief and recovery soon.  Tell her I'll be thinking of her and wishing her the best! 

 

I actually know 2 people who are in dire situations over Lyme disease because of 1) insurance issues, and 2) the way NYS regulates treatment of the disease (which you are probably aware of if you are being treated in NY), and these 2 things are often combined to create such an impossible situation.  These people cannot get relief or recovery; I'm glad your daughter has found a hopeful solution.  Is there a time-frame for her, as far as getting well and being able to stop/reduce medication goes?

 

It is hard, mostly LLMD's don't take insurance but we are incredibly blessed, our primary care rewrites everything he has ordered for her so that insurance, so far, has covered everything but our visits to him and some specialty labwork.

Time frame, no, he told us she was in for a long, hard, slog, but he did say we were GOING to get her to a quality of life remission.  And I have to believe him.  We were approved for her port procedure yesterday and have a consultation with the Dr. who will be doing it on the 6th.  So, progress!

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Lizzie in Ma

Lizzie in Ma

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Lyme is so so frustrating. You have to spend so much money, virtually nothing is covered, and treatment generally makes you worse first. Definitely worth crying over! I have lyme, bartonella, babesia, and erlichea. I am in pretty good shape now. Keep pressing on, keep using a great LLMD. I pray your daughter has a wonderful day despite it all and that all the treatment that is needed it figured out and effective. It really can get better!

 

It is so good to hear a success story!  Very encouraging, bless your heart.

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Lizzie in Ma

Lizzie in Ma

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I'm so sorry. :grouphug:

 

My 7yo was diagnosed 2 months after the tick that likely caused the Lyme. We were fortunate that it seems to have been treated effectively, but we're constantly on watch for further complications.  Scary stuff! :sad:

 

Thank God you caught it quickly.  Our youngest also contracted Lyme, but we knew what we were looking at by then and after 3 months of doxy, she has been fine ever since.  It is indeed, frightening.

 

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plumshadow

plumshadow

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Thank God you caught it quickly.  Our youngest also contracted Lyme, but we knew what we were looking at by then and after 3 months of doxy, she has been fine ever since.  It is indeed, frightening.

 

 

What exactly do you look for in the very beginning?

 

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J-rap

J-rap

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I just wanted to add that after reading all of this, I'm going to have my daughter tested for Lyme's Disease!  She came down with a fever four years ago and from that day on, her life has never been the same.  She has a whole list of strange, ever-increasing chronic symptoms that I won't go into now;  might as well rule out Lyme's just in case.  We do live in a northern state that has deer ticks.

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Lizzie in Ma

Lizzie in Ma

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I just wanted to add that after reading all of this, I'm going to have my daughter tested for Lyme's Disease!  She came down with a fever four years ago and from that day on, her life has never been the same.  She has a whole list of strange, ever-increasing chronic symptoms that I won't go into now;  might as well rule out Lyme's just in case.  We do live in a northern state that has deer ticks.

 

By all means, but make sure you do a western blot, IgG and IgM and get a copy of the results.  If it is not CDC positive, the labs automatically mark it as negative.  That's where we lost two years.  Let me know what happens, please.

http://arizonaadvancedmedicine.com/lyme-disease-article/

http://lymemd.blogspot.com/2009/02/understanding-western-blot.html

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Carrie12345

Carrie12345

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What exactly do you look for in the very beginning?

 

 

We never noticed a rash on my son (which doesn't mean he didn't have one and we somehow overlooked it, but we definitely didn't see it.)  He began developing very swollen joints (knee and ankle). We tested for everything under the sun after the 3rd one.  We probably would have tested after the second if we had taken him to the ped instead of urgent care that time.

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gaillardia

gaillardia

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Lizzie, The son of a friend rode a pony at a place where they paid to ride a pony. This was a big business near OC, MD. The NEXT day on their long drive home the little boy noticed he had weird bugs in his groin area. He was covered in deer ticks. The ponies were neglected actually. By the time they got home, 2 more hours, and got an appointment and the boy had his shirt off in the doctor's office, the bull's eye rash appeared and was gone within a short period of time, I forget if it was 10 or 15 minutes.

He was tested for Lyme and it was positive but I am sure he hasn't suffered from the many complications and symptoms that so many who go undiagnosed for a time end up with.

It is Lyme disease, not Lymes or Lyme's.

I am sorry for anyone who suffers from this disease. We know a woman who also suffered from it, before knowing what it was and before it became so common. She had crippling arthritis that came on her suddenly and fevers for months. She was finally treated and has had a remission.

Prayers for you all...

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J-rap

J-rap

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By all means, but make sure you do a western blot, IgG and IgM and get a copy of the results.  If it is not CDC positive, the labs automatically mark it as negative.  That's where we lost two years.  Let me know what happens, please.

http://arizonaadvancedmedicine.com/lyme-disease-article/

http://lymemd.blogspot.com/2009/02/understanding-western-blot.html

 

Well my daughter was at Mayo already earlier this week, so she asked to be tested for Lyme Disease.  We got the result today:  Equivocal, and they want her to come back for more tests...  I'm not sure what equivocal means, but I think borderline??  She has been sick for over four years now, so this would be pretty amazing to get a diagnosis...

 

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Butter

Butter

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Equivocal indicates exposure but not necessarily enough to be positive.  My chicken pox titer (after having chicken pox twice - and I've had it a third time since) was equivocal.  The doctor explained it as it was clear I had been exposed to chicken pox, but I am not immune.  I would consider an equivocal Lyme test positive.

 

I had Lyme Disease in 2002.  My mom was diagnosed at the same time.  I am forever grateful that our family doctor happened to have had Lyme Disease himself a couple years before.  My mom had a single bulls-eye rash.  I had several that came and went.  Based on our symptoms, he started antibiotics immediately.  Our blood tests were positive so he lengthened our treatment by several weeks.  When my son, then 4, got a bulls-eye rash, he didn't even bother with the blood test.  He prescribed several weeks of antibiotics.  I have some issues still from having Lyme Disease that will be forever, but mostly, thanks to having such a great doctor, I'm fine (same with my mom).  I wonder if Fritz's extreme anxiety is his leftover remnant from having it (don't know for sure since he was so young when he had it).  I hate Lyme Disease.

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Lizzie in Ma

Lizzie in Ma

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Well my daughter was at Mayo already earlier this week, so she asked to be tested for Lyme Disease.  We got the result today:  Equivocal, and they want her to come back for more tests...  I'm not sure what equivocal means, but I think borderline??  She has been sick for over four years now, so this would be pretty amazing to get a diagnosis...

 

 

pm'ed you.  Strongly suggest you get bloodwork sent to Igenex

http://www.igenex.com/Website/

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Lizzie in Ma

Lizzie in Ma

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Equivocal indicates exposure but not necessarily enough to be positive.  My chicken pox titer (after having chicken pox twice - and I've had it a third time since) was equivocal.  The doctor explained it as it was clear I had been exposed to chicken pox, but I am not immune.  I would consider an equivocal Lyme test positive.

 

I had Lyme Disease in 2002.  My mom was diagnosed at the same time.  I am forever grateful that our family doctor happened to have had Lyme Disease himself a couple years before.  My mom had a single bulls-eye rash.  I had several that came and went.  Based on our symptoms, he started antibiotics immediately.  Our blood tests were positive so he lengthened our treatment by several weeks.  When my son, then 4, got a bulls-eye rash, he didn't even bother with the blood test.  He prescribed several weeks of antibiotics.  I have some issues still from having Lyme Disease that will be forever, but mostly, thanks to having such a great doctor, I'm fine (same with my mom).  I wonder if Fritz's extreme anxiety is his leftover remnant from having it (don't know for sure since he was so young when he had it).  I hate Lyme Disease.

 

I wonder if there may be co-infections that were not addressed?  That was the issue with Rowan, the tests were negative for them until we sent to Immunosciences lab.  Worth checking in to, our LLMD said her panic and anxiety issues were mostly from the Bartonella.  Co-infections are more the norm than not.

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ElizabethB

ElizabethB

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Teff flour is a nice gluten free grain that has high protein content. It makes an OK pancake with water and no sugar, and a nice pancake or cookie when she can have sugar again. In Ethiopia, they make a fermented sourdough flatbread out of it that is also yummy.

 

http://www.amazon.com/Bobs-Red-Mill-24-Ounce-Packages/dp/B000EDI0X2/ref=pd_sbs_hpc_1?ie=UTF8&refRID=0WCCM8A1J9AYEAH837E1

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Lizzie in Ma

Lizzie in Ma

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Teff flour is a nice gluten free grain that has high protein content. It makes an OK pancake with water and no sugar, and a nice pancake or cookie when she can have sugar again. In Ethiopia, they make a fermented sourdough flatbread out of it that is also yummy.

 

http://www.amazon.com/Bobs-Red-Mill-24-Ounce-Packages/dp/B000EDI0X2/ref=pd_sbs_hpc_1?ie=UTF8&refRID=0WCCM8A1J9AYEAH837E1

 

Thanks!

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kewb

kewb

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Lyme and friends (as we call the coinfections) is awful.  My dh just had a hickman catheter put in for IV antibiotics.  It is horrible dealing with lyme denier doctors and fighting with the insurance company for coverage.  

 

Happy Birthday to your daughter.  May she start feeling better soon.

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Lizzie in Ma

Lizzie in Ma

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Lyme and friends (as we call the coinfections) is awful.  My dh just had a hickman catheter put in for IV antibiotics.  It is horrible dealing with lyme denier doctors and fighting with the insurance company for coverage.  

 

Happy Birthday to your daughter.  May she start feeling better soon.

 

I hope and pray your dh get better with iv meds too.  It is an awful road to be on. :grouphug: :grouphug:

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