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Posts posted by madhu

  1. Hi,

    Thank you to all of you who have responded. Sorry I did not see the posts till today as I was so busy these 2 weeks. Only today I am sitting in front of the computer. This was a difficult 2 weeks for me ....my son was bitten both by bed bugs and Ticks in one day that we were in DC. The welts he got from the bed bugs have started to go away. The bite marks from the 2 ticks are looking like 2 red dots but not expanding. I am watching them. My son is on Doxycycline 100 mg 2x day and I'll be starting flagyl tomorrow. My DAN doctor didnot know about tindamax, so he ordered flagyl. I've sent the ticks to 2 labs ... advanced laboratories and MDL (Suggested by Dr Jones office.). I'll have to wait for 2 more weeks to get the results. I'll post when I get them.

    Unfortunately I did not have a magnifying glass and I sent them immediately.

    Also I had an appointmet with my LLMD who said that we'll be treating for LYme anyways. I liked my LLMD ..he is in Vermont..we had our first appointment in June. If anyone is looking for a LLMD in that area, pm me. thanks to all of those who helped me in finding my doctor. The reason we went to the East coast is to see all the doctors there and find one that suits us. The irony is my son got tick bites there when we went for treatment.


    Also I had to deal with "If we brought bed bugs with our luggage"

    I opened the baggage and put things through out the house by the time I came to know that my son was bitten by bed bugs. I cleaned my whole house house.....I mean the whole house...washed all the clothes in hot water that itself took a whole week. Ordered matress covers and called the pest management companies....All of them were quoting anywhewre from $1500 to $3000. ....I researched a lot on bed bugs and their different treatments. Finally I settled with one company who came yesterday to treat my house with chemicals( I have been so careful not to use any chemicals in my house or yard for the last 12 years) I took everything out of the house...I mean everything. Now I have wait 2 more weeks to redo the whole process again. All this when I dont even know if we brought them with us. I am so tired. But I pray that this issue is over. I didnot dream that one small bug can cause so much trouble. as if we did not have enough on our plate.


    Thank you all once again and I'll post once I receive the results.


  2. Hi,

    We went to the North east area from Dallas to find a good LLMD and stayed in Washington DC for the last day ( 25th) in an apartment my husband stays( he works there and travels). On 27th,he saw a lot of bugs in the apartment and asked the apartment to eradicate them. They just told him it was bed bugs. On 27th here in dallas my son complained that he a lot of bite marks on his body and they look like they are bed bugs bites . I'm very scared here ....I have already opened the suitcases and left it opened for the last 2 days. Yesterday I cleaned all the clothes and dusted the suitcases outside. But I'm worried that they would have already crawled out if they were on the suitcases. Yesterday the whole day I was worried. We went to get my son cured and came back with more problems.

    today I got a scare when my son went to the bathroom to bath and found 2 bugs in his groin. He pulled them out before telling me ....they are pin sized and full of blood. I am freaking out here......I stored the bugs in a container....I do not know what to do now.

    So now he is bitten by beg bugs and ticks....just by visiting virginia. I dont have an LLMD here in texas......but I do have DAN here who will prescribe me anything I want. Please tell me what is the first line antibiotic to use in case of tick bites.

    I am freaking out here. Please help.



  3. Hi, My friend's daughter got it about 7-8 months ago. They tried anti viral medicine which did not help, then they tried wheatgrass spray which helped a little but new ones would crop. It was all over her body.she went to India last month, someone advised her to apply neem leaf paste along with mustard oil. She did that for a week and all of them disappeared. She is fine now with nothing to tell that she had moluscum at all. She will be back in 2 days and I am waiting to see her. Will let you know in a few more days all the details. She also mentione that it has to be fresh neem leaves made to a paste and mixed with mustard oil.

  4. Hi Stephanie,

    I went cold turkey with diet when I read on latitudes forum about diet when my son started with TICS both vocal and complex motor tics. Then I started back things one at a time and found that milk caused him vocals.

    Wheat, from reading a lot about it , I dont think I will add it back at all. We found him to be allergic by both muscle testing and peptide test from great plains.


    We eat rice, lentils, vegs, fruits and organic chicken and sometimes in season wild caugh salmon. Thats all. I cook all the dishes at home.


    I think a claritin helps because....when kids have allergies because of their sensory problems they kind of become tics...like blinking mouth twitching, nose breathing, coughing tic or huffing...


    I dont know why the combination of CoQ10 and Acetyl carnitine helps...I think it is because of mito issues that a lot of our kids have.


    I want to add that all this along with DAN protocol did not cure him just made things much easier. Onl;y last year when my kids got sick ( my younger son tested positive for strep while my older one tested negative as usual) , My younger one also started ticcing afgter 3 weeks and that is when I figured it was PANDAS. My older ones tics also became bad. For some reason both my kids dont have high titres. This is the reason we never thought it was PANDAS for my older kid.

    From last year we are looking at PANDAS.


    Hope this helps.


  5. Hi Fixit,

    The things that have helped us in our 6 year journey...They have not cured him but helped him to a point where he can function


    DIET : Big Help

    1] Remove dairy and wheat: Removing dairy eliminated the vocals. Tried this many times in 6 years.

    2] Removed all processed foods outside (not just HFC, colors, preservatives and additives)



    these are the supplements I use during exaberations along with regular supplements everyday.

    1]Magnesium calms him. You could do epsom salt baths everyday in the evenings.

    2]Clariton helps with spring allergies and this helps with the TICS that are caused by the allergies. This is very bad in my boy.

    3] CoQ10 - 50 mg and Acetyl Carnitine 250 mg quick help with TICS whenever the tics wax.



    1] No TV / SCREENS

    2] No out side play during allergy season

    3] Prayer


    Hope your kid gets better soon and this helps. These are just some things I do when things get bad but I do a ton of things apart from this.


    Recently we started both my kids on zithromycin every day ( 3 weeks)for both my kids...still waiting to see improvement.



  6. Hi,

    I got the Igenex results today. Those of you who have done this testing please help me to intepret the results. Should I do continue with testing for the coinfection panel?


    IFA 1:80 positive



    IgM igenex negative

    CDC negative


    31 band INDeterminate

    34 band INDeterminate

    39 band INDeterminate

    41 band ++



    IgG Igenex negative

    CDC negative





    41 +++

    66 +


    Since so many bands were indeterninate ( weakly positive) and 41 being positive ...I was thinking should it not be positive.

    Also What does the IFA test mean if it says positive...is it a good reliable test?

    I would like as many inputs as possible....so if you have done the testing please send your input.




  7. Hi,

    Both my kids have PANDAS. My older son ( 10 yrs) got glasses with astigmatism and myopia which is increasing rapidly every 5-6 months. We dont have glasses in both mine and my husbands family. I believe it is because of the PANDAS ....

    My younger son ( 5yrs) started having PANDAS from last may.

    His symptoms were..

    1] joint pains

    2] TICS

    3] frequent urination

    4] blurry eyes ( big issue even now)


    The blurry eyes ....he says that it happens for 20-30 seconds and cannot move during that time and it looks like an old fashion movie ( his words) It goes away if he blinks and it keeps happening through out the day. It was very bad when his PANDAS started and again from last month when his TICS also increaseed.

    This made me think it is all PANDAS related even with my older son. May be the inflammation in the brain is causing all this.


    I have taken him to opthamologist last week. He has myopia( small) right eye and long sight and astigmatism in his left eye. He has asked us to check again after 6 months.

    I was scared that this was absent siezsures. Have an appointment with the neurologiat next month. Will let you know what he says.

  8. Hi,

    We are considering IVIG locally through our DAN doctor. Those of you who have done IVIG , can you please post the codes used by Dr K or other doctors.

    and if insurance covered it.

    Our doctor wants us to get preapproval and also the codes.


    Maybe if everyone who have gone through IVIG process can do a poll where they list the codes and if insurance covered it , we can see if there is a correlation.



  9. Hi,

    Last week I started giving probiotics for my kids and I noticed an increase in TICS immediately in my younger son.

    There was no strep strain in the probiotics.


    BACKGROUND of my younger son: Started with TICS last may 3 weeks after a strep infection which was treated with amoxicillin. I did you probiotics then too.

    After that we used zithromax and diflucan for 3 months along with T&A. (His Tonsil tissue had strep pneumoniae and staph aureus)This eliminated the tics completely. We thought the ABX CURED him because we started this soon. This lasted only 2 months. He got Pneumonia in october and after this he has TICS all this while. It was decreasing in intensity for the last 2 months. But suddenly for the last 3-4 days he is ticcing badly. Only change is the Probiotics. Yester day I gave him Diflucan and it helped a little.

    Can someone tell me whats going on.... is it the YEAST, STREP or BAD BACTERIA OR PROBIOTICS. I'll be very careful with Probiotics from now on.


    Also as a baby, at 2 months I gave him probiotics along with his older brother and which I thought was good for anyone. Soon from nextday, he started having green bowel movements which lasted till he was 2 years old. He also stopped breatfeeding . I have asked and shown him to many many docotrs...and got no help for this. Later it went away with homeopathy.


    I also considering IVIG for my kids but have not been able to decide yet.


    I am hoping I get some answers from this wonderful group.


    I am

  10. Hi Dr T,

    My son also has a lot of bowel issues which started right after he started having TICS at age 4. Prior to it he had 4 courses of antibiotics. He is now 10 and still has severe bowel issues and underweight for his age.

    We are working with our 3rd GI who has promised to look at all the angles why he has so many bowel movements a day instead of saying he has IBS.

    He also gave FLAGYL to try for 14 days. I'll let you know how that goes.

    My younger son also started having TICs last year 3 weeks after a strep infection and this led me to PANDAS research....but I've always doubted if it was more than that. Maybe the 5 doses of abx before the strep and during strep infection. Maybe clostridia or maybe LYME or yeast or PANDAS .

    Hope some day a brilliantand compasionate doctor like you will solve this problem and it would help all of us.

    Hope this helps.


  11. Thank you all for your replies. I am hoping it will help my son's gut issues.

    Please let me know if any other therapy helped your kids gut issues.


    DCMOM: My sons gut issues also started after he started TICCING at 4 yeats of age. It first started slowly as stomach pain, diarrhia now and then, slowly it developed now as frequent bowel movements every day. He goes the bathroon as soon as he eats. the stools are also not formed. The doctors dismissed these isuues as IBS. But I want to rule out IBD hence I am seeing a new gastro who is willing to rule that out or find what is going on. By the way he is underweight. He is 10 1/2 and is only 56 pounds. He is the smallest in his class.

    Also my younger son started TICCING last year 3 weeks after a strep infection which directed me to PANDAS diagnosis. He is also complaing of stomach pain now.



  12. Hi,

    Since there is a lot of posts about LYME recently, I want to test my kids for LYME< BARTONELLA and MYCO.

    Could someone who has done them tell me whats tests to do and which labs do them? For mycoplasma..what is the test everyone is talking about and can that be done at regular lab like quest or labcorp.

    I have an appointment coming up with my DAN doctor and would like to take as much information as possible to discuss.



  13. Hi,

    I dont post here much but this site has helped me for the past 5 years in helping my kids.

    I have done supplements, chelation, diet and just now starting abx for PANDAS and just found out he has viruses.

    He has a very very high load of LEAD in his body.

    Now I am doubting they have lyme too. Will be testing soon for this.

    But I cant seem to understand why our kids are getting these pathogens loaded in theier bodies in the first place.

    Is it heavy metals that cause these pathogens to add up OR the pathogens cause heavy metal issues in their bodies.

    Has anyone dealt with both these issues in their kids? Just want to know how many of our kids are heavy metal toxic?



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