posted
Took my daughter to regular pediatrician to test for Strep as she has been exposed and presenting how she typically does.
Total waste of time. While there I mentioned the bumps on her legs, as I said no one has been able to determine what they are. She promptly told me that they were not worrisome (uh, except to the person who has them all over their legs!) and that "not everything is a zebra".
I am so mad right now and can not believe I wasted another hour of our lives at the doctor. THanks for understanding.
[ 06-18-2016, 08:32 AM: Message edited by: AJB ]
Posts: 62 | From VA | Registered: May 2016
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posted
This is exactly the response I have been getting to the inflammation over the tops of my knees that happens nightly. No pain is present, no limited range of motion, so doctors are like "don't worry about it". Even my LLMD: "I wouldn't worry about it." (!)
Posts: 16 | From Utah | Registered: May 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I know how you feel and I am sorry this is the "advise" you are getting. It sucks!!! Makes me so angry too. I see it all the time and want to blow my stack.
I also lost relatives who were told "don't worry about it" and "it's only stress- take a vacation" when they actually had a very deadly form of cancer that wasn't detected until it was too late because of these IDIOTS.
I see this as a form of abuse. It should not be happening. Since it is still illegal to shoot people (I do check every once in a while), maybe this will help a little?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And I know it isn't Christmas, but maybe this will make you smile. Get some of that garbage out of your head so you can calm down. It was my online Christmas card from last year.
posted
Doctors are told not to diagnose. I had to go through several primary doc interviews to find one that I could discuss Lyme with. I think it takes a special doctor to "go there" with us.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Thank you Tincup...those did make me smile! It has been a long day. I am so annoyed that I even bothered, but since we know she was exposed to Strep thought it reasonable to go to regular peds vs LLMD (who happens to be out of town).
I'm most annoyed that she told me not to look for Zebras, yet had NO IDEA what /why the bumps were all over her legs. MADDENING.
If it isn't a zebra how come you don't know what it is???? ugh. THANKS for "listening" to my rant!
[ 06-11-2016, 10:59 PM: Message edited by: AJB ]
Posts: 62 | From VA | Registered: May 2016
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
I'm sorry, AJB. I wonder what would have happened if you told the doc not everything is a deer!? .
Couldn't help it.
I know how frustrating and saddening it is. I'm sorry.
Question/Idea: Can you take a pic and email it to her LLMD? And then call the office and ask the secretary to let the doc know about the email so he can be sure and look at it?
Just a thought.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
I emailed it the other day, but didn't get a response. We go on friday though. I think he is out of town for the weekend, as we had hoped to get in sooner.
Posts: 62 | From VA | Registered: May 2016
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posted
Just a thought: call your LLMD's office on Monday and ask if there were any cancellations. You might be able to get in sooner than Friday if there were.
I completely understand your frustration! My son had red stretch marks/streaks running horizontally on his back at the waistline for years and no matter what doctor I took him to, no one could tell us what they were, let alone what was wrong with him! At our first visit with the LLMD, I lifted up his shirt and asked, "Doctor, what are these?" and immediately he answered, "That is from Bartonellosis, a co-infection which comes with Lyme Disease."
I'd recommend you find a non-condescending new PCP who is "Lyme-literate" or at least, "Lyme-friendly" (I'm still looking for one in our state). Check the VA Lyme Support Groups - they would know better about VA.
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8982 | From Illinois | Registered: May 2006
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Since they come and go on your teen you might consider among the many, many things that can cause this- low platelet count.
The other thing I'm thinking, and I know you can't wait to hear this.... ~smile~
Has she been tested for ehrlichiosis, RMSF, or other spotted fevers--- like the most recent one found in Virginia?
Her feeling so bad now, along with this rash appearing again concerns me.
BUT, just so you know I also get them on/off and have had RMSF and ehrlichiosis both that were not diagnosed or treated for years and I am still kicking.
However, if it is one of these infections she would need to be treated. And you are in luck! Yes, yes.
I just recently updated the RMSF pages for some docs benefit (justify treating), and of course everyone else. If you scroll down to the pictures you'll see some rashes- see Figure # 25.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BTW- Hope it makes sense. I'm TRYING to watch the race and doing this during commercials. One more note...,
I get a "relapse" or reoccurrence of the spotted fevers during the hot summer months without being re-bitten. Every year it has happened. Don't know why, but full symptoms, the rash, feeling like dying, etc. all return.
Doxy, doxy and doxy...
And I do hope she feels better soon. You are a wonderful mom to care so much. Wish all our kids were that fortunate.
posted
Thanks for all the info, I will sit and read it asap. I have to admit I have lost track of all of the things she has been tested for.
I do not have a copy of the latest testing that Dr. J did. But nothing was definitive. She has multiple bands showing on ML (I think) labs test, but not enough to be "POSITIVE" so it was dx clinically. She was positive on the IgG side.
She sees LLMD on Friday afternoon.
She is currently on 100 mg Doxy 2x a day
1 dose of Rifampin every other day as she was herxing so badly, or so we thought, now wondering if it was Strep exposure.
Thanks for all the support.
Posts: 62 | From VA | Registered: May 2016
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Tincup
Honored Contributor (10K+ posts)
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posted
oh my gosh, I have those spots and have had them for years! No matter what I ate, changed my diet, increased exercise, decreased chemical exposures, changed everything to sensitive skin products...NONE of it has worked.
My LLMD noticed them on my visit and wrote it in his notes but never told me what they were from.....and I still have no idea
-------------------- Looking for help. Diagnosed with: Fibromyalgia, IBS, GERD, Neuralgia, Occiptal Neuritis, Vertigo, Restless Leg Syndrome, Anxiety and Depression. Am I losing my mind? Posts: 5 | From Massachusetts | Registered: May 2016
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posted
I have had little bumps come up on my legs - very itchy. I took Doxy for a month which knocked them back a bit, but they came back. The bumps are from Bartonella. Here's what I do for them. I spray Collidal Silver on them and sometimes that will eliminate one or two of them. For the tough ones, I put Maximum Strength Desitin on them and gently rub it in.
Don't cover them with a bandaid since Bart causes extra blood vessels to form and weird stuff happens under the bandaid. Two nights ago, I took off a bandaid and the papules was down and the extra blood vessels under it were gone, but I had an explosion of extra blood vessels form all around the bandaid.
I have had the papules begin to disappear slowly by taking Bromelain. At least, I think that's what has helped. I take a lot of herbs for a lot of things. Plus I'm treating Bart itself with Japanese Knotweed.
Posts: 653 | From Northern Virginia | Registered: Oct 2014
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posted
She has a clinical dx of Bartonella, and not sure about other things.
Currently feeling crappy today. She feels awful most of the time, I thought she would see more relief from the meds...difficult to tell if it is constant herx, which I didn't think was a thing, or side effect of meds.
UGH. Running low grade fever today.
Posts: 62 | From VA | Registered: May 2016
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Tincup
Honored Contributor (10K+ posts)
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posted
"Currently feeling crappy today."
Those are my words when I'm herxing. I also run a low grade fever. And the only way to fix it is to back off the meds. Not for a day or two- until the health improves. Might consider it till you see the doctor on Friday?
Herxing can and has killed people. Herxing in misery does not help someone get better any faster and can be detrimental to the health in general.
I can't say it is a herx, but she either stays miserable and suffers, or you try to reduce the misery.
If not careful she may stop the meds and never take them again- associating the meds with being much worse than the disease. We've seen this happen before.
And a teenage girl... oh my!
If you were to take her to the ER they probably wouldn't know what is wrong with her, but they would stop the meds.
Just some things to consider. Hope she is doing better soon!
posted
thanks, we had decreased the Rifampin to every other day, but cont. the doxy. I am thinking that we need to hold off on the Rifampin until we see him.
Of course whenever we stop or start she seems to feel worse. It is so crappy for her and stressful for us for sure.
Posts: 62 | From VA | Registered: May 2016
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writing this with double, blurred vision, but it looks fine to me and certainly is not a Zebra
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
Saw Dr. J today. He is pulling the Rifampin, defly feels like the bumps are Bartonella vasculitis. He was kind and offended for us that she would say that. As he put it, we are dealing with something that IS out of the ordinary, but it really depends on how you are looking at things.
He feels like her reaction to meds further indicate Bartonella. We are starting a new med in two weeks, but will remain on Doxy. Hoping to let her body have a bit of a break, although he does not seem like a dr who uses pulsing.
She continues to miss out on most normal 13 year old girl activities. SO frustrating and sad.
[ 06-18-2016, 08:20 PM: Message edited by: AJB ]
Posts: 62 | From VA | Registered: May 2016
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