*$#@ - EM Lyme Rash

[smartyjones]

well dear friends - I can never seem to extricate myself from this forum -since I see this is something of my 1500+ posts and as I break down in tears that I have been a member since 2009 - ds10 is having some troubles. -- but alas, it's not as bad as it could be.

 

he has been doing very well heathwise for 2.5 years. the last semester in school there were many struggles -- I believe mainly due to 2E issues that seem 'hidden' but are not so difficult to understand -- if you just look slightly beyond the 'he just doesn't want to'. he had a big problem last year that was likely due to a slight flair with a virus.

 

the first week of school was fine - the second, he refused to go to class. there is actually a clear line of reasoning - he was afraid something troubling would come up, he would act somehow out of line and he'd get in trouble. this was his experience last year. I have been trying to tell them the train is off the tracks since March.

 

what was different was his unbending degree of concern. he refused to go a couple days, which of course, just feeds on itself. we went to our integrative MD who thought he was having autoimmune involvement, likely due to a virus (he thought vector-borne). he started some remedies and we started ibuprofen.

 

ds got a little deeper into cognitive inflexibility (likely a worse before better reaction) and then began to pull out of it.

school was trying to help but really only offering a 'you must do X' plan - full-on Ross Greene Plan A -- a proven poor way to deal with ds.

 

he's 10 so I don't often see him dress or shower anymore. Last Friday, I was in his room and saw him change his shirt. I couldn't believe it -- a 5 cm EM rash on his back just under his arm! our docs were booked so we went to urgent care. doc there confirmed and put him on doxy for 2 weeks. ped thinks should be 3 weeks. our integrative MD has his ideas also. I'm interested to hear what any of you weigh in with. I guess if you're gonna have lyme - you might as well have a rash!

 

he's back to his normal self as far as our general life in concerned -- except school is still a problem, mainly with backlash from the initial problems and then more backlash from lack of good crisis plan when everything hit. I'm not sure this is a good place for him any longer.

 

I'd love to hear thoughts on meds, testing - plans for the future. the doxy is every 12 hours; he's on a hefty probiotic at the 6 hour inbetween -- any other advice on counteracting side effects of the abx? thanks!

[putting together the piece]

Please get to an LLMD asap. Both my kids are PANDAS/PANS with chronic Lyme. It is a bear to treat and a good llmd is necessary if you want them to get well.

[SSS]

Oh Smarty. In my blunt manner: please do more than the 2 weeks of Doxy! Please do at least 4-6 weeks. You say things are getting better (except residual fallout) do you think it's from Doxy? Do you think this is a brand new tick bite? Be very, very careful in the sun on Doxy. Easy to get a chemical sunburn from it. Sunscreen or stay out of sun if possible. You also want a hefty dose of the Doxy 2x a day. The Lyme rash is absolutely definitive: infected with Lyme disease. If it's brand new, that's the best news if you have to have it, but drown it out NOW with enough Doxy and duration.

 

As far as school, my dd9 is now doing homeschool online through our district, w/ a very small class meet 7 other kids w/ teacher for 2 hours 2x a week. Astonishing, it's going much better than I thought possible. Although we are re- treating Bart, God help us. But I couldn't take the stress, flaring from others, bad friend choices, possible/ past bullying, etc. we will finish out the year/ 4th grade this year and go from there. Of course I don't have an outside paying job, either. So it was possible.

Hang in there-- S

[LNN]

if it makes you feel better, I too joined in 2009 and am on my 3100+ post - so you're not alone. I agree with SSS- push for a minimum of 4 weeks of doxy and keep him out of sunlight. But you may want to get on the waiting list of an LLMD so that if a few months from now things still seem wonky, you're already on someone's list. You can always cancel a week before your apt. Go to lymenet.net to ask for dr recommendations near you - or ilads.org

 

Lyme is a nasty beast and you really need someone with experience to help you - someone who's seen it all before. Getting with the right dr made all the difference for DS. Get yourself to a good LLMD. Once you get over the sticker shock, it will be well worth it.

[rowingmom]

And unfortunately lyme doesn't travel alone. He should be tested for the coinfections common in your area.

 

Everything I have heard from the lyme community recently says that doxy simply forces the spirochetes into a cyst form. This will result in a decrease in symptoms, but the cysts open when abx treatment stops.....

 

I am so sorry.

[smartyjones]

so roving mom -- what does that mean? do a herbal protocol without abx at all ? do herbal with abx?

[rowingmom]

The trouble with doxy as monotherapy (and I believe this applies to monotherapy for many other infections as well) is that the spirochetes (or whatever bacteria) are able to avoid its effects by encysting, morphing to an acellular (intercellular) form or by producing biofilms. If you are using other abx or antimicrobial herbs in combination, especially those that are able address the different forms all at the same time, there is less ability on the part of the bacteria to be able to evade impact of the antimicrobial.

 

Buhner uses herbs specifically for this reason because, unlike single constituent antibiotics, herbs are comprised of many different constituents, each functioning synergistically (the sum is more effective than the parts). Some herbs contain efflux inhibitors which stop the bacteria's ability to pump abx back out after they have penetrated the cell wall, along with their antimicrobial actions. Some herbs address biofilms along with their antimicrobial actions. Some herbal antimicrobials address more than one form of the bacteria.

 

If combinations of these different herbs are used (with or without pharmaceutical abx - Buhner says his herbs can be used along with abx, just be careful because the herbs are powerful in their own right) the result will be a more complete assault on the infection.

 

Of course, any antimicrobial therapy will be unable to completely eradicate bacteria in the body/gut, and we really don't want that anyway. The immune system has to be supported, which means the gut needs to be properly populated (because it houses a majority of the immune system) allowing the body to naturally take care of any remaining infection.

 

I believe an important part of this gut/immune system support includes a diet without pesticides. Glyphosate in particular acts as an antibiotic, decreasing the amount of beneficial gut bacteria, and a chelator, binding needed minerals in food and making it unavailable for assimilation.

 

http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx

1. First, glyphosate preferentially kills beneficial bacteria in the gut, which allows pathogens such as C. difficile to overgrow. Not only does this lead to leaky gut syndrome, but C. difficile produces something called p-Cresol, a phenolic compound that is toxic to other microbes via its ability to interfere with metabolism. (C. difficile is one of only a few bacteria able to ferment tyrosine into p-Cresol.) As it happens, p-Cresol also promotes aluminum uptake by cells. P-Cresol is a known biomarker for autism and is also an important factor in kidney failure,which leads to aluminum retention in tissues and eventually to dementia.
2. Glyphosate also serves to increase aluminum toxicity by "caging" aluminum to promote its entry into the body. Glyphosate promotes calcium uptakeby voltage-activated channels, which allow aluminum to gain entry as a calcium mimetic. Aluminum then promotes calcium loss from bones, contributing to pineal gland calcification.
3. Bringing melatonin back into the discussion, glyphosate interferes with what is known as the shikimate pathway. Although humans do not have the shikimate pathway, our gut flora do, and we depend on our gut flora to supply us with essential amino acids and many other things. Disruption of the shikimate pathway in our gut results in depletion of tryptophan, which is the sole precursor to melatonin. Besides needing melatonin to transport sulfate into the brain, we also need melatonin to reduce heavy metal toxicity. Where supplies of melatonin are adequate, melatonin will bind to aluminum, cadmium, copper, iron, and lead, and reduce their toxicity. Where melatonin is low, a lot of damage can result.

http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf

 

http://www.i-sis.org.uk/How_Roundup_Poisoned_My_Nature_Reserve.php

 

....Monsanto has a total of four patents filed on the chemical. They bought it as a chelator of heavy metals (used for cleaning boilers by ‘grabbing’ minerals) [10] and then marketed it as herbicide [11]. In addition they filed a patent on it as an antibiotic in 2002 [12] and as an antiprotozoal against malaria in 2003 [13].

 

For me, the above explanation can be the only reason I have seen continual improvement in DD with every herb we have added.

 

We are treating only with low doses, but the addition of herbs that address protozoan (intercellular) infections has given DD great gains. Gains that we didn't have using bartonella herbs (or bartonella abx - biaxin, rifampin, azithromycin, plaquinel, tindamax, malarone, minocycline in various combinations) alone.

 

I'm not saying that you need to use herbs, but I think monotherapy will not be productive in the long run.

Edited September 25, 2014 by rowingmom

[nicklemama]

Oh, geez. So sorry. I would not do less than 30 days of doxy and if I could get it prescribed for 60 days, I would do it. I've also been here since 2009. Bummer. Its taken a lyme dx to finally get somewhere.

Edited September 29, 2014 by nicklemama