Need opinions please

I don't know about the rashes but I just wanted to say I hope your son is doing OK and I am so, so sorry he is so sick.

My very best wishes to him and to you too, I can't imagine what this must be like for you.

Big hugs x

Bells palsy is indicative of Lyme. Did you know he had Lyme before he was admitted to the hospital? So sorry you're dealing with this.

Hi Mom of 2 - I"m so very sorry that you are going through all of this!! And your son too!!

Unless they have complete confirmation that it's viral meningitis, it's Lyme. Lyme causes the exact same symptoms - and the abx that he was given caused a herx and the herx consisted of at least those bull eye rashes. If you haven't yet, and he still has them (even if they are faded), take pictures of those rashes! They are complete confirmation that he has Lyme as nothing else creates a rash like that when you see a knowledgeable doctor!!

Best of luck with it all!! And please let us know how you and your son are doing.

YAY!! I'm so glad to hear that he was feeling well enough to head off to school today!! I sure hope he has a good day.

Have you decided what you will do with this information that he has Lyme meningitis? What will you do for treatments? I know you said he had some IV meds, but it likely wasn't long enough to actually treat the Lyme infection that started this whole issue.

The basic guidelines from ILADS for every person with these infections is to treat 2 months past the resolution of all symptoms. There is no difference between IV's, PICC's or orals. I believe that most that go to PICC or IV treatments, will eventually switch over to either oral abx or herbal protocols to finish out their treatments rather than staying on IV meds the whole time.

No, his CBC won't tell you when the infection is gone, only his symptoms and then treat 2 months past that point to be sure that he has the best chance of not having to deal with this at a later point in time.

I hear a lot of mixed messages about home health nurses, I'm glad you are going to get the training to do them yourself. It'll be much easier to fit into your family's schedule likely.

Mom of 2

Do you think there's any chance of humbly educating the ISDA doctor?

I say this because the ILADS guidelines are now part of our government's guideline clearinghouse. '

The ILADS guidelines are of the highest quality because they follow the GRADE and IOM (Institute of Medicine) requirements. The ISDA guidelines don't.

I would hope that a knowledgeable doctor will recognize the credibility of the ILADS guidelines in light of this.

If you think it might help, here's a link:

www.guideline.gov/content.aspx?id=49320&search=ilads

Happyjo said: "Wow-Trav--I had not seen that link & it will hopefully prove valuable to those, especially with reluctant physicians. I've asked you before, but I don't know where I saved, what is the CDC link that shows that clinical eval should be used? "

"If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods. "

www.cdc.gov/lyme/


Happyjo said: "And do Wormser & their group get away with their conclusion below because of their weasily, wormy wording re "particular strain"?: 
"PTLDS may persist for >10 years in some patients with culture-confirmed early Lyme disease. Such long-standing symptoms were not associated with functional impairment or a particular strain of B. burgdorferi":
http://www.ncbi.nlm.nih.gov/pubmed/26385994 (Sep 2015!)"

What I find "interesting" is that while they acknowledge that it's Lyme doing this, they refuse to admit that it's any particular strain of only one strain mentioned - so do they even know what they are talking about??? Seems pretty obvious that they don't. There are over 300 strains of Borrelia, and Borrelia Burgdorferi is one of those strains - not that the others are strains of Borrelia Burgdorferi.

This is a perfect example of their doublespeak. Trying to say that B. burgdorferi is the main strain and the others are all based off of this one. We've known about relapsing fever for a long time and it's caused by a Borrelia strain - but is not B. burgdorferi, although they are both part of the "family" of Borrelia strains.

If a person views the IDSA comments one at a time, without remembering or referencing the other articles, they almost make some sense, but as a thinking adult, it's pretty easy to see the flaw and the doublespeak of their "articles" that are meant only to discredit anyone that is claiming that chronic Lyme is real.

Whew - sorry for high jacking this thread!! I'm stepping down off of my soap box..... yet again.... for now.

Mom of 2 - keep pushing for your son to get the treatment he needs as outlined by ILADS. Don't settle for IDSA standards as I know that you want a happy and full life for him!

Thank you guys:)

My son ended up at the ER again Friday. The school nurse called me and explained DS was in a tremendous amount of back pain and a headache. I went to the school and picked him up. When we got home he collapsed on the flood crying in pain. Something wasn't right he has a high pain threshold. I called the ID nurse we've been dealing with, she advised I take him to the ER.

The ER tried to do imaging but he wasn't able to lay on his back. After a shot of a non-narcotic pain reliever they were finally able to do a MRI. It showed nothing. All the pain is deep in his back where the tap was done. You can press on the site and he doesn't have pain, it's all deep inside.

My son is a straight A student. He loves school! After Friday's episode he does want to go back. He's too afraid the school chairs are causing the issues.

I totally understand your anger. I can't help but wonder if all of could have been avoided. I took DS to the hospital the first week of Oct. His left upper eyelid was droopy and the left side of his face was slightly swollen. He also had a small rash on his left cheek. The ER Dr. did an x-ray of his sinus cavity and sent us home. I wasn't happy with the lack of treatment so we saw his nurse practitioner the next day. Still, no testing no nothing, and were sent home. My frustration and anger levels are through the roof.

The last few days have been very tough on him. Headaches, backaches and now vomiting. He was doing really well for a while so I don't know if this is a herx or not. Making him take epsom salt baths and drink lemon water. We'll see what today brings. On the bright side, his palsy has improved greatly.

Can lyme form persister cells in the spinal fluid or brain? Could he suffer any long term effects from this? I am so scared for his future.