Wow Banderol really packs a punch

[Hopeny]

Dd is about 95% after >1 year of treatment, combination of supplements, antibiotics, and Samento, We are dealing with Lyme, Bart, Strep, Mycoplasma and MTHFR 677T one copy, and an immune issue called Mannose Binding Lechtin Deficiency (basically her immune system has no quarterbacks to hold virus/bacteria off before the defense kicks in). I added 1 drop of Banderol because I have read great things about the Banderol/Samento combo and on the suggestion of our integrative doc instead of Cumanda. I noticed she started to have a daily crying bout, however we have seen this herx before and it was pretty mild so I plowed through. I really thought we were just about out of the woods with Lyme.Then I took her off abx late last week. Last night she told me not to read her diary so of course I did and there was a one pager from 04-09 talking about suicide (interestingly, decent handwriting and not PANDAS scrawl that we had last year). Have not seen this in about a year!!!!!!

Two subsequent normal entries, from 04-09 and 04-10. Happy today as usual, skipping and nice to sister. of course I have discontinued Banderol and put her right back on the abx today, and will monitor entries. Ugh! Will this insidious disease ever go away?

Edited April 11, 2013 by Hopeny

[Dedee]

Oh, I am so sorry to hear that. Lyme is an insidious bug. I know that must be very discouraging. Hopefully you can get things back on course and look forward to brighter days. Sounds like you really have your finger on the pulse of things. It's great the you can identify issues in your daughhter so quickly. Keep fighting the good fight.

 

Dedee

[smartyjones]

i have no experience or knowledge of the particular products you are talking about. . . however, i did just read something the other day that made me remember something we did early in our treatment with ds.

we were with another provider - not our current - and were using pleosan products. this provider was very conservative (funny to use that word with an alternative provider) in his treatment approach b/c ds was young - i think 5.

 

anyway, i think -- he began with one drop on his inner elbow (i think) and observed. it was a long time ago - but i think we may have done something like one drop then wait 2-3 days. then another. then, when no reaction, we moved to each day. and then eventually moved into oral.

 

just thought i'd mention it -- sounds like banderol may be something that could help - but obviously not in the manner you've done it. may be something to discuss with your doc as a way to slowly work up to even 1 drop.

[Hopeny]

Thanks for the support. Smarty that is a great idea to try. I saw on lymenet that you can also take the 1 drop in liquid and divide to 4 parts, so you get 1/4 drop. I think I will try your suggestion for a while and then do the 1/4 drop. That is when I get up the guts to go back in the water This all has happened over maybe 6 days so I am hoping I didn't do too much damage and I can bring her back. Signs seem positive.

We are actually using transdermal NAC and transdermal B12 so that idea makes sense.

LOL our current LLMD I also find to be very conservative, despite my ID doc cousin warning me that she heard he is a "cowboy" and over aggressive.