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darling787

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Everything posted by darling787

  1. Hi James . We have a very similar history . I've been sick for almost two years with strep and coninfections. While I don't have OCD I suffer from anxiety , depression , muscle aches , twitching and foot pain. I strongly feel I have Bart . I've tried mc bar products and Byron white . The Byron white products ended up being too strong for me . I was bed bound after only two drops for almost a month! I am looking into Buhner as well but my new doc wants me to try ozone , uvl, silver and possibly iv chelation. I was thinking of trying Andy cutlers chelation program but not sure if I have the patience ! I'm active in many Lyme forums and people tend to do very well on Buhner. Let me know how it goes !
  2. Maybe I'll give Augemntin XR a try next. I started bicillin shots yesterday. I still have white stuff all over my tonsils. Everytime I get them swabbed its negative but my ASO is rising again. This is a complete an utter nightmare. My body aches are the worst.
  3. Still really struggling! I was taking pencillin VK 250mg 4xs a day and my ASO dropped from 400 to 340 but now it's back up to 349. I also constantly have white ulcer like pus on my right tonsil. My llmd just started me on bicillin shots (2x weekly)...given I've had these throat issues for over a year maybe its time to consider a tonsilectomy but I am such a chicken. At 29 I am so scared the recovery would be too tough. My doc also says there is no promise it will resolved my ASO and body ache issue. I was thinking of trying the bicillin and then adding in zith or something else...thoughts?
  4. Yes please can you PM the name to me? Thank you!
  5. I am so lost and confused. I don't feel like any of my treatments are working. I don't know if it's because I am not patient enough or I am going to the wrong doctors . Below is a summary of my treatment: I finally found a lyme literate doctor who suspects mycoplasma and possible babesia although I live in NYC and spend very little time hiking, etc. She initially put me on minocycline for about a month but it was giving me bad heartburn so we switched to zith. After being on zith for 5 days (250mg twice daily) I had what felt like a psychotic episode and was bedridden for 2 weeks. In hindsight it was probably a herx. Frightened I sought another opinion from a leading rheumy in the city and he believes I may have a strain of rheumatic fever and wants me to take penicillin 500mg twice daily until my symptoms improve. He thinks a T&A may be helpful but has seen situations where is hasn't helped. I've had the igenix lyme test and it isn't positive according to CDC. But since I have band 18 positive my doc thinks I *may* have lyme. My ASO titer stays around 400...goes down for awhile then shoots back up. Prior to getting sick last year I never had strep as a kid. I don't even know what my baseline ASO is. I wouldn't be so stuck on the ASO if it wasn't for my constantly inflamed tonsils and white spots all over them ( doesn't seem like a coincidence). I'm trying to figure out what to do next! My options are 1) Find a new integrative doc/ llmd and stick with whatever they say. Thinking of Dr. Morrison in NYC. Will cost an arm and leg. 2) Try the long term penicillin therapy. And perhaps IM injections. My doc offered to do these once the national shortage of IM pencillin is over ( should be August). 3) Try Zith again considering it seemed to shrink my tonsils the most effectively but I am frightened of a bad herx since I Have to work full time just to afford my healthcare!. My doc insists I take at least one dose daily. I am so sensitive I am frustrated she won't let me pulse it. Could I perhaps decide to do that myself. If so, would 3x's a week suffice and build up from there? 4) Get a tonsillectomy ASAP. Although I am frightened of the possible complications as an adult. ANY input you have would mean the world to me. I realize I may not have PANDAs but whatever I have is related to strep and there is virtually NO literature/ forums out there for my condition. I've also ready that PANDAs is the immune response to strep and penicillin isn't effective. Do you find that to be true? Sorry for all the questions. I read this forum all day everyday but don't know what to do next since my case is so unique.
  6. Anyone have recommendations for a good doc who will treat chronic strep and possibly Lyme in nyc?
  7. I still have my tonsils are they are often inflamed with white spots. That has been the one notable symptom, along with severe muscle aches, since I got sick last year following dental work. I am absolutely horrified to get them out since so many adults have post-op complications. I go to an llmd and she's tested me for everything under the sun. The igenex lyme test didn't come back positive. She thinks its a possibility I have it but can't say with certainty. The only thing that comes back abnormal in my bloodwork is a high strep (ASO) titer that lurks around 400. My muscle aches are always worse when my throat is inflamed. My tonsils never looked better on zitrho but it gave me major depression, anxiety, dizziness, etc. I was on bed rest. Since I have to maintain a fulltime job it scared me so I stopped taking it. Now a new rhuemy wants me on pencillin again and claims Strep A is not resistant to it I just may need to be on it for months before I get better. I am worried I do have a weird strain and the pencillin may not work...
  8. I realize this is a forum for PANDAS but I am still in desperate need for some guidance and support for what seems to be incurable strep. I'm 28 and last spring shortly after dental work I started having severe achy muscles , fatigue, and white stuff on my tonsils. I had never tested positive for strep via a throat culture but my ASO titer remains in the 400 range. I have been on over 10 different antibiotics but the ASO shoots back up. My tonsils are constantly inflamed with white patches. My doctor convinced me I may have lyme and had me on minocyline for months ( which does nothing for strep). After that seemed to fail she put be on zithromax but I had the worse flair/ herxing of my life. I literally couldn't leave the house, had dizzy spells, couldn't work etc. After stopping for a month I recently started penicillin VK 500 mg twice per day. My new rheumatologist wants me to double my dosage to 2,000mg per day for 2 weeks and then to go back down to 1,000 until my ASO is normal. My lyme doc thinks zith may have been effective and I should try that up again but in a lower dose. I am so confused as to whose advise to follow! Do I take the penicllin for a longer period of time or try the zith again? My rheumy seems to feel strongly that Strep A is not resistant to penicillin but my tonsils and aches are still horrible after being on penicillin for weeks. What do I do next? Thank you so much!
  9. Anyone here of a newer procedure called a laser tonsil ablation in lieu of a tonsillectomy? I am a 28 year old adult thinking of giving it a try. I've had throat infections for 10 months now accompanied by severe muscle aches, fatigue, depression , panic attacks. Have been on over 15 antibiotics. ASO titer remains high. Next step is tonsillectomy which frightens me. Laser seems like it may be a good step? Any thoughts?
  10. I've thought about mercury toxicity but since antibiotics seem to help my symptoms I really think my issue is more infectious. But at this point I won't rule anything out. It's just odd that all these issue began after dental work (root canals for the first time)...and my biggest symptom is a sore throat..swollen tonsils..muscle aches..while lyme could definitely be at play I think a high ASO titer and ongoing throat infections could mean chronic strep that my body just can't eradicate. After yanking three of my teeth out at 28 I don't want to take my tonsils out for no reason ! Especially if this is truly lyme taking my tonsils out won't do anything. I've been tested for lyme and my llmd seems to think I have lyme but I'm not get better. The article below is very interesting..links high ASO, adults PANDAS to fibro (muscle aches) and asserts a T&A is the most successful treatment. Wish I could find more adults in the same situation as me! https://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment
  11. Thank you all. I guess I'm trying to figure out my next steps. I have been on various antibiotics for almost 10 months and nothing seems to bring my ASO titer down for good. It's back up from 350 to 400. I have also taken a ton of herbals. Do I consider getting my tonsils out? The fatigue, aches, fogginess, etc. are unbearable!
  12. Hi All! New here. For the past few weeks I have been reading through some of the previous threads started on adult PANDAS. I am looking for some support and guidance. I fell ill last June shortly after dental work. My main symptoms were throat infections, deep muscle aches, unrelenting fatigue, and an overall feeling like I was toxic and may slowly die. I was put on over 8 different antibiotics and while they seemed to help for a few days my throat infection and all my other symptoms would return. It wasn’t until I finally met a doctor who told me I should get my root canal teeth extracted by a biological dentist. I first received root canals back in May right before I got sick. I got all 3 extracted in early October and my health seemed to improve by about 50%. Although during my extractions I was given clindamycin, started oil of oregano and colloidal silver so it is hard to know if the extractions contributed to my healing or if it was just coincidence. I hit a plateau a few months ago and I just don’t feel like I’m getting any better so I found a new physician who specialized in lyme and long-term Antibiotic therapy. She started me on minocycline which seemed to help somewhat but asked me to switch the azithromycin 250 mg twice per day and pencillin daily(based on my ASO titer shooting back up). I took a few weeks off before making the switch and now I am VERY sick. My throat infections are back, muscle aches are awful but worst of all my depression and anxiety (derealization, people sounds funny etc) are debilitating. (Please note I have been treated for anxiety/ depression since a teenager. On and off ssris. Currently taking 50mg zoloft for past 6 years). My ASO titer is back up to 400 ( since june 2015 its done from 400>370>340>390>400), Igenix lyme test which isn’t positive, my IGM results were : 18+ and 41+ and the IGG 41++ all other bands for both were negative or indeterminate. Lastly my mycoplasma pneumonia igg is 725. I have never had a positive throat culture for strep since getting sick but have had recurrent white exudate. My questions for the group are as follows: 1) Could this be adult PANDAs and if so is a T& A the best treatment option? 2) Is my antibiotic regimen on the right track? Should I consider IV treatment? Up until a month ago I was running long distance again and feeling better so I didn’t want to get too aggressive right away. 3) Should I find a doctor that treats adult PANDAs? If so, any suggestions? 4) Are there any people out there with similar stories as mine? Any success stories? As you can imagine I am frightened and want my life back!
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