Was here and now on Lyme Board

[JuliaFaith]

Just a quick note of experiences on PANDAS site and where we are now.

 

DS13 was diagnosed with PANDAS more than a year ago. Dr. tried everything and nothing seemed to work. Our last resort was IVIG which I was not sure about doing. Saw others exploring the lyme idea and decided it was worth at least one visit to a Lyme doctor. Since then, 8 mos. ago we have been 'unpeeling the onion'.

 

First ND said he had lyme disease, and a few pnuemonias in lungs, thyroid problem, and she was treating it. She also said he was testing high for mold. The test for mold continued to show up. She recommended T&A and after my son being ill for 1 yr. decided to do it. Dr. recommended it on first visit and said 'all PANDAS people should do this'. Found MaRCONS in nasal swab. Treating those still.

 

Just found out that MOLD is the big thing affecting my son. He does show some lyme as well but mold is showing the biggest problem right now. What a surprise!!! Read Dr. Shoemaker's book and are now son treating for mold, removing mold out of house (if we can find it) and will do more testing on house as this evolves.

 

Wish we had known to explore this earlier but glad we are finding it now and treating. It sounds like the lyme is in the system but if healthy, can keep it dormant. Interesting to find out how many people actually carry the lyme.

 

Hope this information helps someone move forward in treatment and sees some healing.

 

My son just got his first 'holding steady and slow improvement' diagnosis last week and we are very hopeful.

 

Best wishes.

Edited June 26, 2011 by JuliaFaith

[smartyjones]

He does show some lyme as well but mold is showing the biggest problem right now. What a surprise!!!

 

It sounds like the lyme is in the system but if healthy, can keep it dormant. Interesting to find out how many people actually carry the lyme.

 

My son just got his first 'holding steady and slow improvement' diagnosis last week and we are very hopeful.

 

Best wishes.

 

 

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing?

 

yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced.

 

thanks.

[JuliaFaith]

He does show some lyme as well but mold is showing the biggest problem right now. What a surprise!!!

 

It sounds like the lyme is in the system but if healthy, can keep it dormant. Interesting to find out how many people actually carry the lyme.

 

My son just got his first 'holding steady and slow improvement' diagnosis last week and we are very hopeful.

 

Best wishes.

 

 

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing?

 

yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced.

 

thanks.

My son goes to an ND (for 8 mos.) and she uses ART muscle testing as a huge diagnostic tool along with blood test etc. From our first visit she said that mold was 'showing up as a problem'. This was 8 months ago. We also discussed several other things so did not think it was the main problem. My son sees her monthly and so soon after the first visit, his body kept showing high levels of mold. So she recommended we start with the petri dishes from a home improvement store to see if there was mold in our house. We had removed some in at least 3 rooms in our basement overy 10 yrs. We did not think there was any left. The petri dishes were relatively minimal in terms of mold so we did not worry about it. Son kept testing for increased mold and Dr. suggested we do an ERMI test. I think the MaRCONS found in his nasal passage were a heads up that the mold was an issue as well. Our ERMI test result was pretty high to our surprise so we started cleaning the house top-to-bottom in case it had been cross-contaminated when prior mold was removed. We also decided to get rid of old carpeting and do some remodeling in case we had to get son out of the house. We found a bit of mold in the kitchen and bathroom upstairs that we did not know about. Also, we found yellow dots on the back of a piece of art that had spent 3 yrs. in Africa... Dr. told us to read Dr. Shoemaker's book and did some of his recommended tests which came back pointing to post-lyme and mold. Mold was the high of the numbers.

 

This has been a huge endeavor and we are maybe 60% done. In the meantime, my son is being treated for MaRCONS & Mold, along with other continuing treatment for lyme, thyroid, pneumonias, nutrition etc. We have an air cleaner in his bedroom and a propolis nebulizer in the family room to keep the air virus, mold, bacteria almost free. Also, we this spray whenever we come out of the bathroom we are remodeling to keep stuff out of the air that may be in there.

 

Treatment for mold (nasal spray, air cleaners etc.) has only been going on for a few months now. Dr. said son only has to take the nasal sprays for 3 mos. (BEG & VIP Spray).

[JuliaFaith]

He does show some lyme as well but mold is showing the biggest problem right now. What a surprise!!!

 

It sounds like the lyme is in the system but if healthy, can keep it dormant. Interesting to find out how many people actually carry the lyme.

 

My son just got his first 'holding steady and slow improvement' diagnosis last week and we are very hopeful.

 

Best wishes.

 

 

julia -- glad to hear you're on a good track! how did you discover mold to be the biggest problem? are you saying you have been treating mold for 8 mths and that is still the most troublesome now or were you treating other things and mold seems to now be rearing?

 

yes, i'm curious about how many pathogens actually are in our body but may not be troublesome until an overload or some event that triggers it to become unbalanced.

 

thanks.

My son goes to an ND (for 8 mos.) and she uses ART muscle testing as a huge diagnostic tool along with blood test etc. From our first visit she said that mold was 'showing up as a problem'. This was 8 months ago. We also discussed several other things so did not think it was the main problem. My son sees her monthly and so soon after the first visit, his body kept showing high levels of mold. So she recommended we start with the petri dishes from a home improvement store to see if there was mold in our house. We had removed some in at least 3 rooms in our basement overy 10 yrs. We did not think there was any left. The petri dishes were relatively minimal in terms of mold so we did not worry about it. Son kept testing for increased mold and Dr. suggested we do an ERMI test.

 

I think the MaRCONS found in his nasal passage (while T&A was done) were a heads-up that the mold was an issue as well. Our ERMI test result was pretty high to our surprise so we started cleaning the house top-to-bottom in case it had been cross-contaminated when prior mold was removed. We also decided to get rid of old carpeting and do some remodeling in case we had to get son out of the house. We found a bit of mold in the kitchen and bathroom upstairs that we did not know about. Also, we found yellow dots on the back of a piece of art that had spent 3 yrs. in Africa, and today, on the inside of the toilet lid that holds the tank... Dr. told us to read Dr. Shoemaker's book and did some of his recommended tests which came back pointing to post-lyme and mold. Mold was the higher of the numbers.

 

This has been a huge endeavor and we are maybe 60% done. In the meantime, my son is being treated for MaRCONS & Mold, along with other continuing treatment for lyme, thyroid, pneumonias, nutrition etc. We have an air cleaner in his bedroom and a propolis nebulizer in the family room to keep the air virus, mold, bacteria almost free. Also, we this spray whenever we come out of the bathroom we are remodeling to keep stuff out of the air that may be in there.

 

Treatment for mold (nasal spray, air cleaners etc.) has only been going on for a few months now. Dr. said son only has to take the nasal sprays for 3 mos. (BEG & VIP Spray).

 

I think you are right about the body tipping over in one direction when overloaded and talked to Dr. about that. We both agreed that once his body tips to the healthier side, it will do more to help heal itself. We are right at the cusp of that right now...and hoping it will continue in good health direction!

 

We are exhausted with all of this but really excited about the healing that is happening! Hope you are finding some paths to follow as well.

Edited June 27, 2011 by JuliaFaith