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Old 03-26-2022, 10:46 PM #11
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So update, my autistic friend went to the doctor again and found out her medications for her pre existing conditions(s) were at a dangerously low dose causing a lot of the physical issues she was experiencing so her previous doctors had been completely irresponsible. The diabetes type symptoms appear to be a separate problem from her GI track that may be treatable to reverse the diabetes. The seizures also appear to be epilepsy occurring separate from the medication screw up.
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Old 03-26-2022, 10:58 PM #12
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I hope they're feeling better very soon. It's so difficult with having multiple conditions. Sounds as if their doctor is helping sort it all out now. Epilepsy isn't uncommon for those with autism diagnosis unfortunately. I forget the stats but it isn't that low. My two never had seizures thankfully.

Autism and Seizures: Whats the Connection?- Autism Research Institute

take care.
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Old 05-07-2022, 05:59 PM #13
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So this person's other issues are due to Lyme disease that had been untreated.
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Old 05-07-2022, 09:13 PM #14
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Hi funnylegs, thanks for the update. That's shocking news about your friend but at least they have found the cause of some of those problems at last. I hate to think of how much inflammation has been going on in their body. Just terrible. Hopefully with treatment now their arthritis and other original issues can be helped and that there is not in too much ongoing damage and pain. I wonder how long she's had it. Undiagnosed, late stage Lyme can have so many terrible consequences.
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Old 07-16-2022, 05:00 PM #15
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This friend of mine is suffering nerve pain and nerve death seemly as a result of the Lyme disease. They use a wheelchair now. They still have issues with their blood and blood sugar levels that lead to being lightheaded and weak if they do not eat on a very specific schedule.
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Old 11-01-2022, 01:59 AM #16
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My autistic friend is now blind because the neurologic connection between the brain and the eyes has become severely damaged.
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Old 11-11-2022, 03:29 PM #17
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I wonder if your friend or someone caring for them has ever made contact with the Global Lyme Alliance. They have patient support services and information about clinical trials as well as up-to-date research.

Patient Support Services - Global Lyme Alliance

p.s. I just read an article there when I was checking the url and someone has written about how they were losing vision but are now doing better. They had developed swelling on the optic nerve. It's in the blog section.
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Old 11-18-2022, 10:26 PM #18
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Quote:
Originally Posted by Lara View Post
I wonder if your friend or someone caring for them has ever made contact with the Global Lyme Alliance. They have patient support services and information about clinical trials as well as up-to-date research.

Patient Support Services - Global Lyme Alliance

p.s. I just read an article there when I was checking the url and someone has written about how they were losing vision but are now doing better. They had developed swelling on the optic nerve. It's in the blog section.
Thank you so much! We had not seen this. I'll pass this along to my friend immediately. Unfortunately the swelling in my friends case seems to have caused optic nerve dysfunction to the point of 20/400 blindness and no attempt can be made to restore it now apparently. Believe me this person would want the vision restored even a small amount if it were possible. They have now linked my friends epilepsy to their other conditions and the fact that the seizures were uncontrolled for awhile seems to have further damaged the whole nervous system. Now my friend wishes to know how to safely swim as an epileptic.
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Old 04-28-2023, 10:54 PM #19
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So my friend finally found a doc that knew what they were doing and turns out my friend has spine damage and brain damage causing a lot of bizarre problems with movement but Lyme is still a factor as well as a reaction to a medication perhaps. MRI said
right thalamus damage
nodule
Tiny dominant of venous anomaly in the left corona radiata
bulging spinal discs at T4, T5,T7.

Is this result linked to seizures? Anybody else have insights on what this means?
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Old 01-11-2024, 06:34 PM #20
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My friend has EDS, Ehlers Danlos syndrome which means this person has joints that don't work, chronic pain, chronic fatigue, and seizures and it's genetic. They still have Lyme disease.
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