JuliaFaith

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=10 Here is a thread about lyme disease and the CD-57 test. Have not read it yet but it looks interesting.

You know, I am beginning to think that the CD-57 was left off the blood draw request form. We did get in at the end of the day when the Dr. was supposed to be done. Will double-check on this tomorrow. Thank you for noticing this.

Thank you for all your kinds words and information. The CD-57 is a vit. D test apparently, so not sure where the lyme test is in the ones coming up (hair/urine). Have an older son in the hospital, so not much time to reply to each entry. Will keep you posted. Another appt. in 3-weeks. Will be interesting to see what his primary care dr. has to say about all of this. We see her Friday.

http://www.ncbi.nlm....pubmed/18812627 and http://www.ncbi.nlm.nih.gov/pubmed/17928638 do also note that it can interfere with immunosuppressant and other medications http://www.mayoclini...effects/AN01717 Obviously, your doctor knows more about your child than I do, and may be spot on with this prescription, but I always believe parents should be fully informed on the pros AND cons of anything, med or supplement, so felt it important to mention this Thank you for mentioning this! It is interesting that some melatonin has animal products that can carry viruses! Neither of our dr. have checked out the one we are using. It is from 'whole foods' and says it is ok for vegetarians but still would like to get this checked out. We thought the dosage was a bit high as well. Thank you for your insight!

Just looked at her notes and it says "Heals GI mucosae."

Amazingly, we got an appt. for my ds in this dr. office (not with him). She said that they had treated several PANDAS cases. She said that we might want to remove tonsils. This was shocking coming from an ND! My son has never had a pos. on step or myco but she said that does not mean that his tonsils are not harboring bacteria. Their testing was very interesting (electromagnetic driven). The testing was very specific for my son and so treatment/protocol should not be followed by others without going thru the testing. She is treating his lungs (has had 3 cough/colds since Feb. all neg. for mico). She is treating lungs for possible mold, micoplasma, and Babesia. We are having a nebulizer sent tomorrow so he can inhale steam daily from TriQuench. It says on our instruction, that he has to do for a year. She is treating his extreme GI inflammation with the following (his other Dr. has him on HCL probiotics too): Ketotifen (prescription and she says patients love this) Flora Stor (probiotic) Beta Glucan (probiotic) Lactoferrin (anti-inflamm.) Melatonin (5 mg every night-helps with GI problems) For lyme, which he has not been diagnosed with yet, she prescribed Rock Rose/Cistus tea. For nutrient support she recommended the following: Thorne Vit. K2 Selenium synergy CORE Vit. D drops She also said that he needs to start taking all of this as quickly as possible so "a leg of table" does not collapse. Apparently, they all work in concert with one another so should be taken during the same time frame. We are also doing a hair analysis for heavy metals. Blood draw for thyroid panel and CD-57 for lyme. Our other Dr. has him on Circumin/vitamins/EFA/glutamine/clay. We return in 3 weeks to adjust his treatment accordingly.

Hoping that you will get some results that can be dealt with and help with healing. We have our first LLMD appt. tomorrow, but they are only doing urine/saliva tests first. We have a 30-page appt. packet to fill out. It should be interesting. Will be sending good thoughts your way today. Julia

Will give this a try. Will keep you posted on all of this when we get more info. It was amazing that we got the appt. However, it is with someone else (other than the main dr.) in the office since the dr. is practicing in Europe for November. Thanks Dut and take care.

He has been tested for MP at least 3 times and it has been neg. each time. He has been on Biaxen about 3/4 times for 10 days and once for a month. I think we did a z-pac at least once as well. None have reduced his continuing symptoms (except maybe after getting the cough until he is where he was before the cough). Good that you know the underlying infection. We keep looking and hoping for something to show up (besides PANDAS). 5-day steriod bursts have not done anything except make him feel worse. This is why we are checking out LLMD. Thanks for the input.

Best wishes for your child's treatment and continuing good health afterwards!

Thank you for your insight! You make a good point. If we have to re-schedule it would be far into the future for another appt. Best health wishes your way!

Just had my flu shot in an attempt to stay healthy with my son so sick. They told me there were no preservatives or mercury in the shot. It covered 3 flu's and H1N1. So many friends last year that caught H1N1 had continuing respiratory problems. Good luck with your decision.

After 8 mos. of flu-like symptoms and PANDAS diagnosis we are seeing an LLMD because not getting better. After being off abx for 2 weeks for lyme testing and miraculously getting an appt. this Fri. at LLMD office his flu symptoms are feeling much worse today. He has not picked up any addl symptoms other than the ones that have not gone away in all this time (they are just much worse). Now not sure if we have to get on abx right away (per PANDAS dr) and re-schedule lyme appt. They wanted to do urine and saliva tests but said he had to stay off abx. Note sure if he can hold steady or will improve in the next 3 days or will get worse without abx. All we know so far is that a cough triggers his PANDAS but this time there is no cough so do not know what to expect. Any thoughts?? Thank you!

Thanks so much for your input. Will have to make some decision today. Still waiting to hear from the Llmd office mgr. Was supposed to talk last Fri. but was postpone til today, now postposed an hour. Wait and see... (this seems to be the montra on this forum. Hope your treatment goes well.

This is great information. Thank you again and best wishes for your children's lyme recovery! Julia

Thank you for the reply Wendy. Your prior posting, I believe, is what got me thinking about all of this to begin with. Best wishes on treatment. Julia

I feel like this is the 'egg before the chicken question' but here goes: We are treating my ds12 for PANDAS but he has not improved in several months. Was going to do the IGENEX testing on Monday, but today I talked to the llmd office (still trying to get appt.) and they want me to call back on Monday. So I asked if I should go ahead with the IGENEX testing or wait to talk to their office mgr. on Monday. She said that the doctor is able to diagnose some of the lyme co-infections without the test and that they will order tests for whatever they may be suspecting. This may be a less costly way to go rather than spending $1,000 on the tests up front. So I will, at least, wait to talk to mgr. Sooooo, do I do the test first and then see the llmd or wait? For those of you that have been through this, what do you think? I suspect my insurance will not pay for a large amount of the IGENEX testing but would pay for the llmd dr. visit and maybe more likely their tests as needed. Oh, forgot to mention that our PANDAS dr. wants us to start abx and steroids on Monday after the tests are done. Any ideas would be greatly appreciated.

We are having the Igenex test done on my ds next week with approval from our doctor. It was my idea and she went along with it. She is a very good integrative doctor but has little experience with Lyme. She suggested that I find a Lyme dr. and make an appt. (because they are so hard to get in to see) and her and I will discuss the test results first. She also has other doctors that she will confer with about the results. She has treated several PANDAS patients. Any good doctor would do what she is doing. She truly cares about her patients enough so that if they need other specialist's help she is very supportive. She sees herself as our cheerleader and my son loves to visit with her because she is so understanding of what he is going through right now. With PANDAS and Lyme it seems you really need a good doctor so that there is one less thing to worry about. Best luck finding a good doctor(s)!

Once she heard about ds12 PANDA symptoms (OCD, anxiety)specific to him, it was like a switch and a neurologist was recommended. He was given a clean "arthritis" diagnosis which we had expected. Igenex testing is next... if neg. 2-week steroids and IVIG. Have not had any resolution with 5-day steroids yet. We had to go for sushi (cooked) and gelato afterwards to feel better. What a long road...

This is my son's main way to socialize right now after being ill for 8 mos. so he is looking for some other kids his age to talk with and hook up with their "gamer tags" to meet on-line. They do not have to reveal their real names, but hopefully could relate to each other, and what they are going thru. Please PM me if you have a child that may be interested. Thank you so much.

My ds12 tried it and did not have success using it with a Pandas exacerbation. Our insurance covered the dr. visit that determined it would do him good but not the biofeedback sessions. Go figure. Since he has not wanted to practice daily (which is necessary) and it did not help him at all thru an exacerbation, will discontinue. We also have other medical costs coming up and cannot do both. It does seem viable under right circumstances, but with PANDAS I do not believe the kids have a lot of choice. Best of luck if you decide to pursue this course.

Thank you for all the information. The article was very interesting as I am trying to get an appt. with Dr. Klinghardt. Just set up appt. to speak with his office manager in 2 weeks so it could be a long process. His is local so that helps. If necessary, may need to go to one of his interns that also have practices now. Best wishes on healing.

One lyme dr. that I am considering taking my ds to follows this protocol. Anyone know about this? Thank you.

It takes around 3 weeks for results. Thank you! Just read that Babesia test needs you to be off abx as well so will wait to do both tests after abx.