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frikfrak

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  1. frikfrak
    Hi, I must say all this confuses me greatly....We are be treated by a highly regarded LLMD...his last stool sample said no parasites, some levels of metals high but nothing terrible. His latest urine sample just said high lead, mercury just alittle over, nothing bad. His LLMD didn't seem too concerned expect for the lead. It was 34, over 2 is high. They want us to look into IV chelation, they do not do this so we have to find someone else. As far as the aluminum, I'm thinking of using AKA....did some research and it looks like something worth trying, any thoughts? We do have a high protein diet, we eat ALOT of chicken, some beef but all organic and grass fed.
  2. frikfrak
    Hi, thank you for the replies. Yes, we've been treating lyme for almost 4 years and babesia for 1 year. Suspected Bart because his only symptoms are mentally. Nothing physical, never was. Biofilms, you take Sera Peptase or Luokimase (sp?) which he has been on for years. His Mom
  3. frikfrak
    Hi, My DS (23) has high levels of ammonia via blood test and high levels of lead (34) via urine provoked test. For ammonia, he was on Lactrolose for 30 days, 2 tablespoons once daily, and then we rechecked the levels and they actually went up...now doc wants him on it 2x day but because of everything else he takes we can't fit it in. Does anyone know of something else I can use besides Lactrolose. If so, for how long and how much? Also just received his urine results and it says high levels of Lead. How he could have gotten this I don't know. He was on 6 months of chelation pills (chemet) stopped in March. Should we go back on them or do IV chelation? Is there another way to deal with this? any thoughts are appreciated His Mom
  4. frikfrak
    Hi, Was just wondering if maybe it wouldn't be a good idea to have a running list of what people think of the certain antibiotics that worked best for certain diagnosis; PANDAS/lyme/bartonella/babesia/Myco P and some combos as well. I believe you need an intracellular and extracelluar drug along with cysts buster. Any drug not good on its own? Some that work better together? How long to stay on abx / combo to see if working before switching; 1 month..2 months? Rifampin? Zithromax? Minocycline? Omnicef (Cefindir)? Doxycycline? Plaquenil? Flagyl? Tindamax? Just thought for people just beginning to deal with this or not sure, they can maybe refer back to this for help.
  5. frikfrak
    Hi, Well I'll try and make this as short as possible. My son is 23, diagnosed in Dec. 2009, Lyme, all bands positive and RMSF. Found babesia in 2012. Treated with LLMD (2 of them) over the next 2+ years with oral abx and IV doxy for 9 months. Now on 3rd LLMD. All of which have tried numerous abx, combos, IM bicillin shots. zitho/omnicef/rifampin/amoxicillin/Bactrim DS/flagyl/tindamax/LDN/Mepron/Malarone/mino/plaquenilvaltrex, more I can't think of, various combos of these. Nothing has worked, kept getting worse. Bout of OCD back in 2010, laughs ALL day, uncontrollable. Currently still laughing, playing with top button of shirts-before that played with deck of cards. Currently on Augmentin XR/Nystatin/Malarone/Flagyl/Biaxin....actually doing alittle worse, laughing more. Complete personality change early on, symptoms came on overnight which is why we took to doc in the first place. Recently been told to look into PANDAS so here we are now. This seems to fit much more than lyme because he is all mental, nothing physical, never physical. doesn't speak, lost, confused, totally out of it. On lots of supplements. Obviously were missing something since he's been on all this and nothing. All LLMDs we've seen are very well known. Like you all, spent tons of money and still nothing. Decided to see Dr. O on advice from this forum. Called and left message, hoping for an appt. ASAP. Hoping for the best as usual, but not going to lie, hard to stay positive. His Mom
  6. frikfrak
    Hi, Did already posted that I had my 1st appt. with Dr. T in one month but now I'm wondering if Dr. B would be better. I only ask because of all the blood work that's going to be needed and also the money for the appt. I think Dr. B takes insurance, yes? I can only afford one of them, where do you think I should put my money? FYI: son been seeing LLMD (currently on #3) since 2009, only worse. His Mom
  7. frikfrak
    thank you, that's a great idea. I'll call them tomorrow
  8. frikfrak
    Hi, I just made my 1st appt. with Dr. T in 1 month. No sure if my son (22) has PANDAS but everything fits. He's been treating w/a lyme doc for 3+ years and still not better. All mental, nothing physical. Got some blood work back today: ASO 372...down from 402 back in Oct. 2012 Ammonia levels higher...71....was 58 on last test Positive for Streptozyme scrren and streptozyme titer Copper low, 0.50 M. Pneumoniae AB (IGG), EIA...3.17 high, normal is <=90 IL-4 still high at 6.03....normal 0.0 - 4.1 Cystine...low 13.4 Hydoxproline..high 52.4 alpha-aminoadipate..high 2.6 Beta-alanine...high 19.3 A couple of others are high also. I told the office I'd bring these tests results with me but they said the Doctor would probably want us to take more test (his own blood work) Is there anything I should ask specifically? Bring with us? thank for any help His Mom
  9. frikfrak
    hi, thank you...found it....I'm in NJ
  10. frikfrak
    Hi, Been treating with an LLMD for 3+ years and just recently starting thinking this can be PANDAS also since my son isn't getting better. Anyway, brought it up to my LLMD and am starting my son on Aurgmention (?) and Biaxin. Just about the only 2 he hasn't tried. Can I ask what LLMD 's people are seeing. I have a list of PANDAS docs, thanks to this forum. I am now seeing an excellent LLMD (past 6 months), was just wondering. Always good to have a list Also, if someone PM's me, where is my inbox/mailbox...can't find it. thanks
  11. frikfrak
    Hi, Was just wondering if there is a supplement or herb or anything that you give your child to help them when they are having an increase of symptoms, whether that's tics or behavior. Something to calm them (symptoms) down. thanks
  12. frikfrak
    Hi, thank you all for your replys. Yes he was on Difflucan a couple of times and does currently take VSL#3, 1 packets 2x day. I believe its 900 million. He also takes theralac, 1 2x day. He's been sugar free "mostly" for a couple of years, gluten free and we eat very healthy, probably 90% organic, lots of veggies, veggie smoothies. Now, we are not perfect. There are times we let him have a cheeseburger but we're pretty good. Unfortunately EVERYTHING has sugars...even his gluten free bread. I just try and buy the lowest amount of sugar in something as I can. I'm going to start giving him Garlic pills and coconut oil daily. I'll start slowly. I read these help. thank you all again
  13. frikfrak
    One more thing would anyone be able to give my some LLMD's names in NJ and also maybe a neurologist who believes in lyme and PANDAS...my son is over 18, so not a child. Always good to know of others. thank you all for putting up with me His Mom
  14. frikfrak
    Hello, Yes he was on IV doxycycline for 9 months but didn't get any better. I have brought it back up and they say it wouldn't help. I know, I know....going to bring it up again, see LLMD next week. Yes they are considering Bartonella, His meds for the last 6 months consisted of Omnicef / tindamax / Mepron / Zithromax / Malarone / Bactrim DS / Factive / Valtrex / Moxatag and I'm sure a couple others I can't think of. He has been on rifampin in the past as well as many others. Currently on Moxatag / Flagyl / Malarone and Nystatin.. We are seeing a very highly regarded LLMD. We are going to get a EEG to see if he's having seizures, hopefully within the next couple of weeks. I must be dropping the ball somewhere....we been treating ever since we got the blood test back with positive lyme and RMSF over 3 years ago. WHAT THE HECK AM I DOING WRONG...I do everything they say, give him the abx and supplements everyday ON TIME. We've brought him to countless docs. His psych doc is considered the "best" in this part of the country.... This has consumed my life...I am online everyday, every hour looking for "something". sorry to whine....i'm just going crazy trying to "fix" him. I know he's in there somewhere...I just have to get him out. This is mentally exhausting, I'm so tired all the time. His Mom
  15. frikfrak
    Hi, My son does take many supplements prescribed from his LLMD, one of them being Curcumin from Xymogen...he takes 1 twice a day, has been for over 6 months. Is this the same thing? I didn't realize curcumin was for yeast. If its supposed to help with that then I guess its not. Does the brands you mentioned work? If so I'll use them. thank you for your help His Mom
  16. frikfrak
    Hi all, decided to start a new thread for uncontrollable laughing. My son 22, has lyme and babesia. has been treating for 3+ years. Been on numerous abx thruout. He's only gotten worse mentally, nothing physical. Now he's totally mentally disabled. doesn't speak but 1 word phrases. Sees a lyme literate pych doc. He has prescribed countless meds to try and break thru and stop the laughing by nothing works. We are now giving him sequerol, first to help him sleep, but now thruout the day for the laughing but that too isn't working. any thoughts what could help? Anyone know of something like this, I search and search the web and nothing. Even his psych doc has never seen this. There is a med for this, Neudexta, but that too doesn't work on him. His Mom
  17. frikfrak
    Hello, Yes, my son has been on numerous abx...he's positive for lyme (or was) all bands positive, rocky mountain fever and babesia last year. Been tested for all other co-infection, so far all negative, although tested for babesia back in 2009 and was negative then positive in 2012. Yes, he's currently positive for candida, his mycoplasma pneumonia is positive. See LLMD next week and plan on addressing these issues. He is taking a lot of probiotics daily and nystatin with his abx. What is really concerning us is his uncontrollable laughing..its gotten worse, its constant for literally all day long...no breaks. It must be so hard on him, his mind and body. If anyone has ever had this or seen this and has any supplements or meds to help calm him quickly, I'd appreciate hearing from you. I am going to start a new thread with this. thanks
  18. frikfrak
    Hello, Yes, thank you. I too keep a log of everything. I create a calendar each month showing his meds and supplements then write on each day how its going, ie, laughing bad / on/off, how he fell asleep and such. Can't see to find anything so far that helps. Like I said, he's been laughing since this started 3+ years ago, just not this bad. At about 3 months after diagnosis he became extremely angry/cursing and scary. The doctor at the time wouldn't see him again unless my husband came to the appt. with us. Then roughly couple months later started laughing and continues still. I prefer him being angry Anyway, thank you for replying. If anything gets better, I'll post. His Mom
  19. frikfrak
    mdmom - tried to send you a message but you are not receiving any. My son also has psychiatric issues. Can you please contact me, I would love to ask you some questions if you don't mind. thank you frikfrak
  20. frikfrak
    Hello, I am new here and am very interested in the IVIG treatment. Can any doctor do this? What is it exactly? My son (22) has lyme, RMSF and babesia but nothing is working. I also suspect PANDAS, his ASO titers are very high. Is there a blood test for pandas? He has all the symptoms. any help is appreciated, thank you His Mom
  21. frikfrak
    hi, my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09. Been treating every since but he has only gotten worse, all neurological, nothing physical. Recently positive for babesia in 2012. Again, still treating. I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it. I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative). When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month. In looking back thru years of blood work, I notice his ASO numbers have always been high. My son did have episodes of OCD about 6 months after being diagnosed with lyme. He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps. Now getting to sleep is terrible, every night its a challenge. Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no. He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question. I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray? ANY help would be greatly appreciated, we just don't know what to do anymore thank you His Mom
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