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My six year old son has just been diagnosed with Linear Morphea on his scalp. It is Localized Scleroderma on his scalp. He has a tiny bald patch above his left ear. You can not see it because the layer of hair on top of it covers it. He also has a thin line of missing hair that runs along side his part and leads to a larger bald spot which is more noticeable now because they shaved his hair to get the biopsy. We are blessed because it is local scleroderma. However, he just started taking prednisoline which he will be taking for 3 to 6 months and he will also be taking methotrexate shots for 2 to 5 years. Does anyone know if the AP works for this type of scleroderma since it is localized and not systemic scleroderma. Also, I know the doctors think I am crazy but I swear his deviated septum is tied in with this inflammation on his scalp and may have been the trigger–Has anyone heard of a tie in with the sinuses and localized scleroderma?
Thank you!
Lauren
Hi Lauren and welcome to the Roadback forum. So sorry to hear about your little guy.
I have Systemic Scleroderma and Lyme Disease and can tell you that AP is effective for Scleroderma, but not enough for Lyme. You should know there can be a correlation between Morphea and Lyme.
Here is one thread on this discussion, but for more just use the “Search” feature and plug in Morphea + Lyme to read more.
http://rbfbb.org/view_topic.php?id=2452&forum_id=1&highlight=morphea+%2B+lyme
Finding a doctor that has a clue about proper Lyme testing can be a bigger challenge than treating it, so let us know if you'd like the list of Lyme docs………trust me, a regular pediatrician will be useless. Lyme is everywhere and can mimic or cause any disease which is why so many people go misdiagnosed or undiagnosed.
Take care…….kim
Kim, Thank you so much for your reply! I can't tell you the sadness I felt when I got the diagnosis–about a week ago we were looking at brain surgery because the MRI on my little guy's brain showed a vein that had possibly come down from the scar tissue on his scalp, through his skull, into the intravenos sinuses–subsequently, he had a CT Scan on his brain and we just found out that the vein is not connected, and my little boy will not need brain surgery! We are just so thrilled, that now, the medicines, as terrible as they are, seem less “evil” because we are out of the woods as far as brain surgery is concerned! I have done so much research and can not understand why my healthy, vibrant little boy developed this auto immune disease. I mentioned lyme disease and they brushed it aside–I took my son to the pediatrician three times regarding his scalp condition, and he was misdiagnosed–I made the appointment with the Chief Pediatric Dermatologist at the Children's Hospital and he knew what my son had the minute he saw him. I am going to ask them to run a lyme test at his next appointment this month–I still think there is some correlation, although he never had a bullys eye rash or tic bite that I know of–Thank you so much for responding to my email. Do you think they can get an accurate read for lyme disease? I am in Nashville, TN—Best, Lauren
Hey Lauren,
No, I don't think you will get anywhere with local Lyme testing and will only be losing more precious time. Odds are they will use the wrong lab and follow the CDC guidelines which are flawed, and come back and say, “well, it's not Lyme, the results were neg.” If there are any significant bands then a Lyme doc (LLMD) would regard them as positive and treat.
Unfortunately there are no LLMDs in your area, but you can get started on the testing yourself now. You can order the test kit from Igenex Labs (http://www.igenex.com) and they will send you the kit which includes forms and 2 vials for the blood sample along with shipping instructions. Catch is your doctor (any doctor) has to sign off and agree to receive the results because they won't send them to you. Test #188 and #189 is the basic Western Blot and costs around $200 (this has to be paid when you return your sample). I did all of that and took my forms to my doc who told me, “Kim, we don't have Lyme in Indiana.” I said, “yeah, I know, but please just humor me.” He did, I tested positive and then traveled to one of the best LLMDs and doing much better now. You can also tell the doctor that you don't need him to interpret the results because we can help with that.
I would suggest you have the forms signed before the blood draw and then have the blood drawn on a Monday from your regular lab, wait for them to spin it, then you pack it up in the materials Igenex provides and drive it directly to the shipper. They won't accept samples sent later than Wednesday. This way you know it was done properly and not be sitting in a warehouse over the weekend and have to start over.
Once the results are in DO NOT let your doc call you with the results and say, “well, it's not Lyme, the results are neg” which can be totally meaningless if there are significant bands that indicate exposure. Get hard copies of the actual test and post them and we can help you interpret.
Sadly, there aren't enough Lyme docs to supply the demand and they all book out for months in advance, so I would suggest you get your name on a couple of waiting lists now and then cancel if his test come back clean. I'll send you some names in surrounding states in a PM.
If your head isn't already swimming enough, you can search the board on Lyme testing and read more about the insanity and ignorance surrounding Lyme. Lyme is everywhere and ticks aren't the only vectors, it can be transmitted by mosquitoes and biting flies, etc.
Take care…..kim
Hi Kim, I can't thank you enough for taking the time to provide me with this critical information! The doctors here are very aware of some of the findings in Europe–that lice, cockroaches, etc. can carry that same borreliosis bacteria that tics carry–Common Sense and my Maternal Instinct tells me that there is a connection. Are there any doctors who specialize in lymes disease and its connection to localized scleroderma? I will go to the ends of the earth to make sure my son is diagnosed and treated with the proper protocol. The Doctors here have been wonderful and are brilliant, however, no one is going to be a better advocate for my child than my husband and I. They are used to all of my questions and know that I have been researching on the Internet, so I don't think they will be offended if I bring the Lyme's Topic up again! I will order the kit–I will go anywhere for a good Doctor–Do you know any Doctors who can help me with the Lyme's AP if my son tests positive? I will go anywhere! Kim, how are you doing? Is your scleroderma/lyme in remission? How are you feeling? You have been an absolute “gem” for helping a total stranger!Happy New Year! Best regards, Lauren
Lauren,
By the time I realized I had Lyme I'd already been treating my SD and RA with the antibiotic protocol, but had plateaued and was still sick. Once I got the Lyme diagnosed, finally, I wondered about whether I would need both a LLMD and an AP. The answer was, no. LLMDs have even more experience using abx than AP docs because they have to use more different abx and at higher doses to get it under control. My LLMD assured me that in treating the Lyme we'd also be treating the SD, which turned out to be the case.
At that time, I asked him if he had any other SD cases, and he was then treating about 5 others with the SD/Lyme combo. I can tell you we have more than 5 SD/Lymies currently on this board so we're out there. If it is Lyme, AP is just not strong enough and needs the heavy artillery.
Hang in there, mom. 😉
Take care…..kim
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