pixiesmommy Posted March 3, 2011 Report Posted March 3, 2011 (edited) Pixie gets a spider-web like look to her skin quite often, usually on her trunk, but sometimes you can see it on her face a little. It's usually worse when she is cold. This was dramatically more noticeable and she was not cold at the time. I noticed her hands while we were eating dinner and I grabbed the camera. We watched in amazement as the "spider-webs" darkened almost to purple during about 20 minutes and then faded. She said she did not have any change in sensation during this time, no pain, itching, etc. This was March 1. Today she still has a noticeable "rash" but her skin is also mottled like as if she has a million tiny bruises. I will try to get a photo this evening if it is still around- this morning was too chaotic with trying to get her to school. Here are photos from two evenings ago: Hopefully you can see the slideshow So, the question is- what "rash" is this? Does anyone know a name for it, or what parasite it is associated with? Edited March 3, 2011 by pixiesmommy
sf_mom Posted March 3, 2011 Report Posted March 3, 2011 (edited) So this is the same rash my twins have over their entire body all the way up to their cheeks. On their cheeks and back of arms also has a sandpapery feel when you rub your hand across it. This rash is present when they are cold or hot. Sometimes it has high contrast in color.... very purple. It is slowly getting better and almost resolved on one twins face. I will know my twins are better when it is fully gone. Our older DS has just a little very faint on his cheeks and back of arm. Hope that helps. If I remember correctly Pixie is positive for Bartonella. -Wendy Edit: Meant to say our LLMD believes it is from Bartonella. Like Michael states in his post too. Edited March 3, 2011 by SF Mom
MichaelTampa Posted March 3, 2011 Report Posted March 3, 2011 That rash is most commonly associated with bartonella. I do hear some LLMD speakers say that with "lyme" you can have all kinds of rashes, not just the classic ones, so, I guess, perhaps, doesn't have to be bartonella.
pixiesmommy Posted March 3, 2011 Author Report Posted March 3, 2011 The first LLMD did not test her for co-infections and the second one says he believes she is actually truly negative for everything except those she tested positive for. I asked about her being on abx when testing and if we could get a false neg for any other reason and his answer was no. She tested pos only for Mycoplasma and HHV6 co-infection-wise. She has a lot of Babesia and Bartonella symptoms, however. SFMOM- Hers is smooth, but she and I both get a very weird sandpaper rash on our cheeks when we are positive for strep. My 3 yr old daughter gets one single blistery-type pimple near her temple when she is positive for strep. I have heard that sandpapery rash on trunk is indicative for strep in a lot of children.
butterflymom Posted March 3, 2011 Report Posted March 3, 2011 (edited) = Edited October 5, 2015 by tampicc
butterflymom Posted March 3, 2011 Report Posted March 3, 2011 (edited) = Edited October 5, 2015 by tampicc
pixiesmommy Posted March 3, 2011 Author Report Posted March 3, 2011 That was the name I was thinking of! I was wondering if it was associated w/Lyme or not. It did seem like a herx, but I have no idea. I emailed it to the LLMD, even though he now does not reply and I get a canned message back- figured he could access it during our appt next week though. She may have endocrine issues, so it could be that.
cobbiemommy Posted March 3, 2011 Report Posted March 3, 2011 DS, 11, has the same exact pattern on his legs. It is livedo reticulitis. It is caused by vasculitis in our case. The Lyme can cause an inflammation in the blood vessels, while the same Lyme can cause the red blood cells to be swollen. This prevents good oxygen supply to the extremities. In terms of Lyme, this could prevent the medicine from being distributed to the extremities and the Lyme could hang out there free from detection. Our doctor prescribed Heparin, which is an anticoagulant. This helps the blood to travel to more of the extremities. If you are prescribed heparin, see if you can have it compounded into a sublingual troche. The two a day would not be fun. This would seem to be one more piece of the Lyme puzzle. I don't know if that is considered a herx, as my son had it before he started antibiotics. Cobbie
JAG10 Posted March 3, 2011 Report Posted March 3, 2011 Yep, it's livedo reticulitis. Dr. T helped us figure this out. My dd11 had this all over her arms and legs. A year ago, Dr. T didn't think it was related to PANDAS. It completely went away with one HD IVIG in my dd, not that that makes it a PANDAS symptom, but heck, I'm just happy it's gone, call it whatever you want!
trggirl Posted March 4, 2011 Report Posted March 4, 2011 My daughter has this also. She also has the red cheeks that sometimes feel like sandpaper. We are not pursuing the Lyme route although I will look into symptoms of Bartonella after reading this thread. Pixiesmommy, please update if your doctor has anything to add.
sf_mom Posted March 4, 2011 Report Posted March 4, 2011 Some Signs and Symptoms of Possible Chronic Bartonella Aggression Agitation All Psychiatric disorders Bartonella Causes over 200 Body Problems and Can Harm Any Organ But Some Patients Have No Clear Symptoms Confusion and Cognitive Troubles Depression and Anxiety Dizziness Dozens of Types of Rashes Drowsiness Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage Fainting Fatigue Headaches Impulsivity Irritability Joint Pain Kidney, Bladder, and Urogenital Disorders Lumps in the Skin Memory Problems Migraines Muscle Spasms and/or Weakness Numbness or Loss of Sensation Oxygen Deprivation Panic Attacks Physically or Verbally Violent behavior Polyps in or on Major Organs Profound Sensitivity to Medications Sleep Disorders Treatment Resistant Addictions and Compulsions Tremors Upper and Lower G.I. Tract Disorders http://www.bartonellamd.com/index.html
pixiesmommy Posted March 4, 2011 Author Report Posted March 4, 2011 Just received email response that LLMD would like to order a blood coagulation test for her. $600 out of pocket. WHEW!
momcap Posted March 5, 2011 Report Posted March 5, 2011 All 3 of my DSs get this when they are cold. DS7 never used to feel the cold, EVER. After the past few months of aggressive antibiotics, he now feels cold and gets the same mottled skin as his brothers. I also took pictures to bring along to our LLMD appointment in April. This is another puzzle piece pointing us towards lyme. Can April 5th come any faster?!!
GraceUnderPressure Posted March 5, 2011 Report Posted March 5, 2011 I'm afraid I don't have any answers for you, but perhaps another piece of the puzzle? We have been taking an herb called lomatium. We started taking it for a virus that just wouldn't seem to go away, but I noticed when I was looking at the info on it that it is used for Lyme as well. After ~ a week on it, all 7 of us developed a rash very similar to German measles except that the spots started on the trunk & spread outward whereas rubella starts on the face & neck and spreads down. After the rash cleared, all of us, but ds18 & I in particular, were left with purple splotches that have gradually faded to the point that they look just like the pictures you have posted. DS18 was positive for Lyme but negative for co-infections on the Igenex panel (His Cunningham results put him just below the median for PANDAS range. His main problems are tics triggered by compulsions and an attention deficit/difficulty focusing & remembering). We continued to take the lomatium because it's advised to take it for 2 months, & after about 3 more wks, 4 of us started having signs of the rash again though on a much, much smaller scale - a few patches & a lot of itching. FWIW, I noticed that I seemed to be itching in places that hadn't been noticeably affected the first time. I have also noticed that we are bruising easily & that some of my kids are having "blood freckles" when they cry unusually hard or, as in the case of the last 2 days with a stomach bug, they throw up. It's possible that it is acting as a blood thinner, but the vasculature definitely is being affected in some way by something. Some additional detail - lomatium rash occurs in approx 1 in 200 people, but the woman I talked to at Barlow Herbal said that in autistic kids who use it, about 90% of them react. She said that she had never heard of an entire family reacting to it as we had - and repeats of lomatium rash are even rarer. Which leaves me with a lot to ponder! Does bartonella or lyme or any of these bugs have a life cycle or stage consistent with the timing of our reactions?
Suzan Posted March 6, 2011 Report Posted March 6, 2011 Well I thought I would chime in to say dd9 gets this too. I never thought of it as a rash before. She gets it on her arms and legs mostly. I have never seen it come or go as quickly as you describe but I've seen it and wondered what it is. It's not there all the time. I'll pay more attention now. Susan
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