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Frazzled

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Frazzled last won the day on July 2 2017

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  1. That's great information, Thanks. I know I have a long way to go, my son is so difficult to deal with because of the Bart, I know he has heavy metals and he's MTHFR like I do but don't now specifics. I was reading Dr. Amy yasko and she talks about A CBS mutation that is part it methylation pathway. I have not done genetic testing on him but know genetically he has a mutation for mold susceptiblility. This mold for. At my request is sending me Tox ease, I think it has a couple herbs in it, I'm worried about detoxing due to seizures.he is very stubborn on diet but I can work on that, thx for the websites. Just trying to get into a Dr. We went to Jemsek early on and went 3-4 times and you always meet with a assistant , $400.00 per appt. He put him on 3 antibiotics at once and he could not tolerate it., around that time we discovered mold and went to new Dr. as I said she did not treat the Lyme and he just got the Bart rash a month ago . He has not been tested for coinfections, I know he could have more than one. Jemsek did igenex western blot came back positive .
  2. Someone on the site referred me to a Dr. Carolyn Walsh in Leesburg. I see she is on the Lyme board of loudoun county. Has anyone had experience with Lyme? If so what are her modalities ? Antibiotics, herbals,HBot, ? Not sure I can get in? Desperate! He is just laying there say after day till we can get an appt saying he doesn't feel good, if anyone knows of other Dr in va, Md. D.C. Besides Jemsek, Fletcher, Fishman, Mozayeni, please let me know thx!
  3. Thank you for your response, I'm going to try and call a new Dr. I've been reading about because yes you are right, it is so overwhelming to me. My son also has grandmal seizures and stopped taking his depakote a year ago thinking that it was making his brain slow. I'm concerned about doing anything without a Dr. to cause it to happen. Has your son been treated by a Dr.? If so how long before you tried the lomatium? Here is my son's rash. It seemed like it was fading a little, I noticed it about s month ago, foes this rash come and honor does treatment make it go away? I don't see him/ body much as he covers himself up in a hoddie and isolates himself in the room. He doesn't want anyone to see him even when I bring food he totally covers himself with a blanket . Yes this site has been informative and a comfort. thx
  4. I want to hear other people's experiences about Lyme/ bartonella . How to help him while I wait 2 months for dr. Appt and can anyone recommend a dr in maryland/va/D.C.?
  5. He had an I've experienced test 1 year ago and they said it was positive, his number was 40 which equaled equivocal, so tight on the border. He has had many western blots, all negative, infectious disease dr. Did a bartonella Elsa test, guessing that will be negative but we'll see. Current alternative dr. Treating him for black mold toxicity tests, MMP9,trans growth factor, VEGF, Melanocytes stimulating hormone, testosterone and cortisol to name a few and I asked her if these labs would be off due to Lyme as well as mold? She said yes. So she has only treated him for mold. I don't think she knows what she is doing and I am looking for another dr. I have one appt aug 21 for dr in sterling. I live in potomac md. Any advice or recommend actions would be appreciated. Where would I get those tests you mentioned? All non Lyme dr.s and infectious disease are useless.
  6. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in phis room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think about remaining symptoms! I want my son back!
  7. Frazzled, I wanted to know what to do while waiting to get into a Lyme Dr. for Barronella. I see someone said to look at Dr. Bruhner protocol, it seems overwhelming to me and dont know where to start. Also some one mentioned diatomaceous earth which I have, but said child could only tolerate 1/4 of dose, what is a dose? A teaspoon any help appreciated. Thx
  8. Thank you for your responses, it feels good not to be alone. I wish I had read these responses before I went to infectious disease dr. He looked me straight in the eye and said the purple streaks were stretch marks! I said how is that possible, he is so thin and has lost 15 Lisandro the marks go horizontally at an angle across his body. I couldn't believe it. He was treated for mold for 7 months he took cholestyramine and a nasal spray for margins and biofilm.i have to say he did improve somewhat as far as heart palpitations, joint paint, tingling and numbness , sweats, stomach pain,vision, hair loss, dragging one leg and not feeling good in general. He is left with headaches, loss of appetite, chronic fatigue , depression, agoraphobia, and doesn't want anyone to see him and the purple streaks. His labs don't look that much different from when he started but something worked to get rid of those symptoms unless it starts out like that and evolves after 15 months. I don't know if there is mold still in house. We had a 60k remediation in one part of basement and I had the air tested after and there was mold in another basemen that we remediated ourselves although it was s different kind of mold that is not as harmful but levels were too high for the house . We couldn't afford anymore remediation insurance would not pay because it was a construction error. I know I have leaks in my kitchen due to water overflowing above a few times and in my office water was coming g down in the gornor from the shower above, my husband says oh it s alright I fixed the leaks. It was hard for him to believe the whole black mold thing. I had fight to prove I was right and this is what's wrong. He doesn't buy into alternative drs initially but I said what do you want to go let him lay there the rest of his life and proceeded to go to regular drs with the ssme outcome. We are still seeing this one dr. For the mold/ Lyme , not sure why she did not treat him for Lyme too just the mold. I called and asked her why she had not detoxes him from heavy metals and yeast? She gave me some BS line and has ordered some botanicals/ supplements to help with that, have not received them yet. why did I have to point that out!!!! I can't get into the new dr. Till aug. 21. Do I wait to get in or try to find another dr, although all of them have waitlists. As I read these posts my eyes tear up with all the pain everyone has gone thru and hope that my son will ever be back to normal fades. Please, I appreciate all your help.! I am sick and tired of family members not believing in me and think I'm crazy for going to alternative drs. They think I should commit him. My husband finally gets it but money is an issue and so mad nothing is covered by insurance! We'll make it some how. These are supposed to be the best years of their lives and I hope I can help him., I'll never stop trying. My son moved over to our barn, there is a room with s bathroom so stleadt he is out of this house. I am treating myself and my 2 other dons with cholestyramine at s great cost from the alternative drs..but I Am stuck in this house and my husband disregard s the other 2 leak areas as not being a problem. If I had the money I eouukd hire someone yo come in and rip out the ceiling to check it but I don't and the air test came back negative with the exception of the other basement which we cleaned and removed everything. So for now I will start the detox and immune support Also drs have said he is depressed but is against taking antidepressants because he read on internet how bad it is for you do my next challenge is to get him to take them, get his testosterone levels labs back and bartonella Elsa test from infectious disease dr. I know it will come back negative but that's all he could offer me. Sorry post is so long, just had a lot to get out .
  9. My son has been sick for 15 months bedridden with all the usual symptoms of mold/Lyme. He was treated for mold and most of his symptoms went away with the exception of headaches, fatigue, neurological symptoms like not wanting anyone to see him and isolating himself in his room. I discovered purple streaks on left side of body. He has had low testosterone and cortisol , not sure if it was from mold or Lyme. Went to infectious disease Dr. sand he said purple streaks are STRETCH marks ! He is 21 has not grown in 4 years, he is 150lbs. He used to be 175 before getting sick. What do you think about remaining symptoms! I want my son back!
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