Lyme Disease

[juliegee]

What's next :rolleyes ???: Last night, as I was trying to go to sleep- Mack ran down the stairs and INSISTED he had an inguinal hernia. He said that there was a lump in his groin area that was VERY tender. Of course, I asked to see it. He was so covered up due to whacko extreme adolescent modesty that I couldn't see much- maybe a small lump in the inguinal area. BUT, I couldn't help but notice a rather large red circle with a dark center above his pubic bone. "That's nothing," he said "Just a tic bite from a few days ago." OMG. I explained that he most likely had a swollen lymph node from the tic bite, NOT a hernia.

I E-Mailed his ANS ped at Hopkins, who asked for pictures. After viewing them. he strongly suspected LYME. Ironically, Mack is already being treated for Lyme Disease with two dosages of 50mg minocycline daily. Dr. Rowe, his ped, has him on his 5th month of this anti-B regimen because he suspects that an underlying (previously undetected) Lyme infection may be contributing to his symptoms.

Dr. Rowe recommended switching his antibiotic to doxycycline & upping the dose for a few weeks. The substitute local internist (regular doc was out) thought that his current Lyme regimen would be adequate. We are stuck in the middle with Mack's health in the balance, grrrrrrrr. Any thoughts?

Thanks for any input-

Julie

[Noreen]

Not a lot of input ,Julie, but plenty of cyber hugs. I do agree with Dr. Rowe on switching to the doxy for a time. The lower dose of minocycline doesn't seem appropriate for a new exposure. I suppose, if the patient had no other issues, I might agree with the doc substitute but in this case he should take a dose of ego lower something and take the advice of his betters - Dr. Rowe.

wish I had your advocacy skills, Julie. Again, mack is lucky to have you.

{{hugs}}

noreen

[juliegee]

Not a lot of input ,Julie, but plenty of cyber hugs. I do agree with Dr. Rowe on switching to the doxy for a time. The lower dose of minocycline doesn't seem appropriate for a new exposure. I suppose, if the patient had no other issues, I might agree with the doc substitute but in this case he should take a dose of ego lower something and take the advice of his betters - Dr. Rowe.

wish I had your advocacy skills, Julie. Again, mack is lucky to have you.

{{hugs}}

noreen

Reen-

You are too sweet. Trust me, I had no advocacy skills today . Like you, I was SHOCKED that this doc opposed Dr. Rowe's (HOPKINS!) advice. Rather than advocating for Mack, (while still in the doc's office) I began plotting my next (passive/aggressive ) move. I have doxycycline here at home for my rosecea. I've written to Dr. Rowe about our visit. If he still wants Mack on the doxy- I'll share. Isn't that awful???? What else can I do....

So frustrating.

Julie

[arizona girl]

I my, the poor kiddo's been through enough. I agree higher does per Dr. Rowe. I'd just by pass the local internist and call Dr. Rowe's office give them your local pharmacy number/fax and have them call it in for you. You can just tell the other guy Dr. Rowe had already ordered done this for you before you talked to him.

You are a good advocate for the both of you. Hope you consider the IVIG and if you do hope it works for you.

[juliegee]

Geez, now he's vomiting & holed up with an awful migraine.... Isn't there some definitive test in the early stages? Wouldn't he have a high white count if he's battling a new infection. I hate to keep assuming it's Lyme

[arizona girl]

I don't know but aren't you suppose to take them to the hospital when there is an acute lyme infection, especially with those kind of symptoms. It might call for intravenous antibiotics. Have you googled treatment for an acute infection? This doesn't sound good.

[juliegee]

Thanks for your input. I think patients need IV antibiotics when they've been infected for a long time & are experiencing acute symptoms- not at the beginning. I could be wrong. I am waiting for advice from Dr. Rowe.

Mack has stopped vomiting, says his head feels better. The rash & swollen lymph nodes remain the same.

My intuition tells me that this tic bite (even if it isn't Lyme) is exacerbating his already weakened state.... I wish there were a conclusive test at this early stage so we could attack it appropriately.

Thank you for your help- I'd be lost without my DINET friends.

Julie

[MomtoGiuliana]

Think there is a lot still unknown about Lyme. I live in an area with a lot of Lyme (lower Delmarva) and havecountless friends and acquaintences who have been infected. For the vast majority, they have recovered after the recommended dosage of antibiotics (2-4 weeks, oral antibiotic). Most caught in the very early stage (the rash) but some were caught in later stage with neurological problems. Even those resolved with this treatment. HOWEVER, I have heard of some people who just do not get better with this treatment and for them the IV antibiotics seem to be the solution. My daughter's pediatrician said that he thinks that different people just respond differently to the infection (as is the case for many other types of infectious agents). Some can fight it and get well w/o treatment, some can get well with the standard treatment, some cannot get well with the standard treatment and another treatment is needed. I think where the controversy is, partly, from what I understand, is how to treat those who fit in that last category. B/c IV antibiotic treatment is not without some risks too, and b.c it is an emerging disease, there is still not definitive research.

[juliegee]

No IV antibiotics yet . Dr. Rowe has switched him to doxycycline, 100mg, twice daily for 2-3 weeks, the he's supposed to resume the lower dosage. I've got my fingers crossed that it'll do the trick.

Thanks for your help with this. I agree, it seems that a lot more research needs to be done re. Lyme.

Julie

[Notgivinup]

I've never been tested for Lyme and we live in a heavily wooded are. I don't recall any tic bites. I did however find a tic or two on myself in the past. Probably about 3 yrs. ago. What are the early signs of lyme? I don't have joint pain, isn't that suppose to be a big sign?

What were Mack's early symptoms? How is he feeling now?

[juliegee]

I've never been tested for Lyme and we live in a heavily wooded are. I don't recall any tic bites. I did however find a tic or two on myself in the past. Probably about 3 yrs. ago. What are the early signs of lyme? I don't have joint pain, isn't that suppose to be a big sign?

What were Mack's early symptoms? How is he feeling now?

I guess the first sign was swelling in the lymph node near the tic bite. (He recalls pulling the tic off.) He also has that traditional bull's eye rash. Last night, he had a severe headache & vomiting. He's always really tired, but seems even more so. We upped his antibiotics today and he seems better. I will ask him about the swelling in his lymph node before he goes to bed.

That joint pain can be an early OR later sign. Many folks with untreated Lyme go on to have irregular HR and nervous system issues- hence the connection to dysautonomia. The most frustrating thing about Lyme is the unpredictability of testing. There are apparently many false negative blood tests depending upon where in the disease process the patient is. Most doctors make the DX based upon clinical signs, like Mack has.

Google Lyme and see if the symptoms fit you. When dysautonomia is caused by an untreated Lyme infection, antibiotics can really turn things around.

Julie

[juliegee]

I swear, truth is stranger than fiction Guess who got bit by a tic now- ME. We were more prepared this time. Mack removed it from my back (hubby out of town) and captured it in tupperware. It is a Lone Star Tick and he think it is the same kind that bit him. You can get 2 conditions from them, HME (similar to Rocky Mountain Spotted Fever) and STARI (look & acts exactly like Lyme- w/o the awful long term consequences.)

Now, I'm waiting for symptoms before I treat. The treatment is the same as that for Lyme- doxycycline. Be careful everyone. We live in Northern GA and I have never seen so many ticks. Mack simply sat on the grass at a park with long pants on, as did his girlfriend. She was also bitten (No symptoms yet.) I was trimming shrubs in my yard, also fully clothed.

If you see a slightly inflamed looking mole that wasn't there before, chances are it's a tick. The ticks that cause Lyme disease are in all states and can have a devastating effect on those of us with already impaired autonomic nervous system. The other conditions that ticks cause can also be quite serious and even deadly.

Julie