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kclynn

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About kclynn

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  1. I thought I would ask here. Don't like artificial sweeteners but not opposed to stevia or erythritol. Other natural sweeteners ok as well. Thanks
  2. I know educated Drs. in the midwest are difficult to find but I thought I'd ask anyway. Been on this journey for awhile. Asking in case there might be a new name or two pop up because things do change.
  3. Thanks! I hadn't been able to find anything about this.
  4. I'm asking because my son has taken Focalin XR 20mg (which is a fairly low dose) for several years for brain fog as recommended by Dr. Grubb. His brain fog can be severe and this really helps. This past week he has been off the Focalin because of a prescription issue but will start again next week when school starts (he is 20, in college). He says he feels happier off of it but also has a return of some loopy (like intoxicated) behavior that was really bad in high school. We see it very mildly every once in a while but has been rare. I hadn't connected this med with the reduction of this behavior/symptom. He has been stable for a long time with maintaining midodrine, florinef and the Focalin XR so he doesn't see a pots a dr. specifically so I don't have a Dr. to ask who would know about this.
  5. I'd be calling very regularly to check on cancellations.
  6. Just got on here and saw your question. I'm from Milw but haven't lived there in a long time. I've heard lots of good things about Drs. Chelimsky. You should be in good hands there. As to the Lyme, I saw on a slide from Dr. Grubb at the recent Dysautonomia conference he listed Lyme as a cause of POTS. My son has Pots and was dx two years later with Lyme by a cdc positive blood test, though a positive blood test isn't required for dx. As for the Dr. referring you to mental health, this unfortunately is a common scenario when a Dr. doesn't have answers, blame the patient. Lyme can cause many neuro psychiatric symptoms. Good luck with your treatment!
  7. My son was dx with Lyme and co 2 years after he was dx with pots. He is cdc positive for Lyme which is very positive but a person can test negative for Lyme and still have it because of the way the tests look for immune response and the Lyme can affect an immune response. Anyway about your question. He felt much better after 4 months of treatment. Then continued to treat for another year. He is very fuctional but still has POTS symtoms. I don't believe the POTS ever goes away and would probably steer clear of Drs. that say it does. It does go into a sort of remission. My son is 20 and wanted to stop treatment so I don't know if further benefit could have been had. He had pretty much plateaued.
  8. The teacher let him take 2 days off and write papers and then Friday they just played water games which he participated in and had no trouble. Monday will start the beginning of the second 2 1/2 week session so I will go and discuss with the teacher how we can get him through this and it would be easiest to do it this way, but not of course at the possibility of endangering him. If she isn't willing to significantly modify things then we will have to do something else. I think she will as she is really great and concerned with his success. I had asked about an online pe class and that wasn't an option. I am sure they will do some other modified class if it is needed. His Dr. who is in this district told me last night they will do that and he can do bowling, horse shoes, modified tennis, etc... make a plan for him. She is on board so that is great, too. They wouldn't count his Physical Therapy which is stupid, but in general the school has been great about things in many ways. Hard during the summer not to be able to get answers Thanks for the support. Christy, how is your son doing? We haven't chatted in awhile.
  9. My son is taking swimming for summer school. It seemed like the only PE class he could handle. He is having pre syncope symptoms, black spots and dizziness. I am bummed. I had heard swimming was so good. The teacher has had him in other classes and totally gets his medical conditions, doesn't make him push, lets him sit out, even let him take 2 days off at her suggestion and write reports. The last time he was in the water he felt that way after swimming 1 lap though. Today is the last day of the first session so he has 2 1/2 weeks to go. Anyone else have symptoms while swimming? He said he got dizzy when turning his head to breathe.
  10. Going to a chiropractor while waiting the 6 plus weeks to get into the pain clinic. He is highly recommended. The neuorsurgeon won't see him because all his films are normal. Katybug will look into that workbook. Thanks
  11. I have asked many, many Drs. and they never feel its a possibility. He is mildly flexible and doesn't have the "typical appearance". Dr. Abdallah in VA felt he does or could have some mast cell issue (flushing, rashes and dermagraphism (sp?) We don't see him anymore, though, long way to travel.
  12. Neurosurgeon won't see him because all his films are normal. Dr is referring him to a pain clinic and also psych because he had a numb tongue last night and she says that is a sign of anxiety. Do I sigh or do I cry?? I just want someone to help him.
  13. Issie, I am the same way. Dr. prescribed me 50mg 4 times a day!! I didn't like the way it made me feel, but then I thought to try 1/2 dose which helps and I take maybe 1 a day depending on pain and if I'm going anywhere. Rama, I can see from descriptions how this might be a possibility. I am also thinking maybe myofacial trigger points? Sometimes when he might be not having much pain, if I accidently rub a spot on his shoulders or back he really reacts and then the pain stays. I was wondering about Fibro, that is my issue and when I was going over the spots they check for fibro he also seemed to have points that hurt more. I'm not a Dr. so beyond my suspicions I don't know. Being a 17 yr old boy makes it more difficult for Drs. to think Fibro...
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