Topic: Can anyone give opinion of my niece's symptoms?
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hello, all. It's been quite a long time since I've been on Lymenet! Maybe some of you remember me.
Anyway, my niece has had a constellation of symptoms and I wanted to get some opinions/advice from you all.
My niece has been a type 1 diabetic since she was 7. She is now 21. Anyway, her problems all started last spring when she tried to get an ear piercing in the upper cartilage of her ear. She got an infection that no antibiotic could reach. She was hospitalized and it was finally lanced and the wound healed.
This past fall she was hospitalized again with numbness and the inability to lift her right arm. Her legs were slightly numb and felt heavy. She had some difficulty in walking. An MRI showed lesions on her spine. She was given Rocephin for 10 days and nothing happened (they WERE trying to rule out Lyme) so ultimately she was given prednisone and released from the hospital with a diagnosis of transverse myelitis, likely caused by a virus.
This all started after leaving home to go to college and breaking up with her boyfriend (two stressors).
A few weeks later she was back in the hospital for the same symptoms. She was put on neurontin and the prednisone continued. She was sent home.
A few weeks later she was weaned off the prednisone, kept on neurontin and the symptoms returned. She had one new symptom, which she described as a "weird" headache in the front of her head. A description beyond that I don't know. She had another MRI and it was found that the lesions in her spine had "moved around". MS has been ruled out. Now they're thinking it's something with the name "optica" in it. I'm sorry, I can't remember the entire name of the illness they're thinking (by "they" I mean the neurologists). Oh, I nearly forgot some vital information - she has low red blood cells/ferritin and very low vitamin D (but we're in cloudy NY and she has a fair complexion).
She is coming home today on prednisone again, because the neurologists told my brother that it is autoimmune and that her "immune system needs to be calmed down".
My sister has Lyme disease and she has been very vocal about it, telling anyone who will listen about how they probably have it, too. People have rolled their eyes at her for a long time. I don't say much, though I am much sicker than my sister is, with multiple co-infections, including babesia. I used to be vocal, but I found that people won't listen unless they have to or want to. It took too much energy to try to educate and change minds. As a consequence, I've forgotten a lot about the possible symptoms Lyme and co-infections can manifest. In fact, I told my brother that it probably wasn't Lyme because she didn't react to 10 days of Rocephin, which was a mistake.
I know the possibilities are endless, and I know my niece has many symptoms. It's just that my brother and sister-in-law don't want to hear a thing about Lyme. They are listening to the neurologists only and think my sister is a quack. My sister does tend to try out many different alternative treatments and has spent thousands of dollars on them. To others, this looks odd.
Well, anyway, that's it - my beautiful niece is at the mercy of "diagnosis unknown". Any ideas? I love her so much. Thank you!
- Auntie Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
The neurologists have diagnosed her with neuromyelitis optica. I looked it up because I couldn't think of the first word. Thanks!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi lymeladyinNY,
I can so relate to not being heard by my sister about my beautiful niece having Lyme also. I took a different approach and suggested she had a parasitic infection, which by the way is now considered the number 1 co-infection of Lyme by ILADS.
That didn't work either.(sigh) Google parasite symptoms and send your brother the info from the Humaworm symptom list page at the outside chance he will hear you. Maybe suggest a parasitologist since they are usually MDs.
You can argue that the herbs won't hurt her and if she does have a parasite infection maybe the herbs will help.
Many here are finding out incl myself, that after yrs of abx, taking antiparasitics are what's been helping them and they are having parasites exit.
It's worth a shot. It's very frustrating I know firsthand. Hope this can be of some help. Ya never know what will open someones eyes.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
My sick niece also had similar situation. Her mom and dad both thought I was full of it, even though I'd been sick with lyme and co's....It wasn't til I asked my LLMD if she could come with me on a visit and I drove her around and got her bloodwork done and tested through IGENEX.
Came back both IGX and CDC positive, her parent's instantly paid attention. She underwent treatment and went back to school and will start college next year.
Low Vit D, sick with a bunch of symptoms, migrating lesions, you have relatives (and you) that have it, you live in NY, they already know a virus(co-infection) was found, etc.....The evidence seems overwhelming.
Just because she didn't respond to ten days of ABX, doesn't mean anything if she's had lyme for a while. Stick to your guns and press. Get her accurately tested through IGX, even if you pay for it.
Her parents need to realize that neuromyelitis optica isn't curable anyway, and it was probably onset by lyme disease. I bet once they see a positive result in a test, that might change their mind.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thank you for the responses. My niece is headed back to college tomorrow and we'll see how it goes. Her parents still don't want to hear anything about Lyme. I don't want to press them at this time because my sister-in-law just lost an aunt that she loved dearly.
They are going to put my niece on MS medications and "see what happens". I'm currently suffering from viral meningitis, which happens to me every winter, so I don't feel up to anything. I hope I don't sound awful in regards to this. I know my vocal sister will still advocate, and I will advocate, too, if things go haywire.
Yeah, I just re-read this and I DO sound awful. Probably 'cause I'm so sick right now.
Thank you!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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