Naturals, herxing, sick, abx

[Suzan]

After the past few weeks, I've become confused withour course of treatment. We moved to naturals and are using Deseret Biologicals homeopathic lyme treatment. Very powerful in the beginning but now we don't notice much. The doc says it's because there's not much lyme left to kill. But I started using grapefruit seed extract and that stirred everything up, I assume bursting some cysts.

 

Then dd10 got sick with the flu and strep and I got a virus (we thought it was strep but culture was neg.) and now a horrible sinus infection. I've been on antibiotics twice in the past 2 weeks and now I feel horrible again. Close to the old days with past lyme symptoms.

 

dd10 is pandasy from the strep with anxiety and unreasonable reactions and fears. In retrospect we noticed that she has been slowly backsliding since the end of January. I think the strep started coming back after we took her off the abx.

 

I don't know if this means our naturals aren't working and we need abx or if we've just found some hidden lyme and we are herxing and the desered biologicals will start to go to work on it again. I can't afford a lyme doctor and our wellness doctor. I'd have to pick one or the other. Our wellness doc has helped us more than anyone so I don't want to quit going to him. So far, I'm going to hang in there and see what we can do without abx I guess but I am concerned. It's very hard to feel so good and go back so far. It almost feels like starting over, but not quite that bad.

 

Good news in all of this is dd9 did not get sick. She is having "normal" lyme symptoms with twitchy eye lids and roving pain which I consider good since she never did have those symptoms before and it all came out as OCD and impulsiveness. She's improved the most between the three of us.

 

Susan

Edited May 22, 2012 by Suzan

[sf_mom]

It is my understanding Lyme likes to hide on the Dendritic cells of the immune system. Sometimes when antibiotics are stopped, the Lyme resurfaces off these cells.

 

http://en.wikipedia.org/wiki/Dendritic_cell

 

Here is a study that some what explains what is going on and how you can be a weak antibody responder.

 

http://www.jleukbio.org/content/82/1/33.full

 

In order to help you make some decisions on how to proceed I would do two things. Make an appointment with an LLMD (as you know wait lists can be long) and while you wait for appointment do the live blood culture with your current Dr. It is my understanding relapses can be horrific and sometimes worse than original presentation. These dendritic cells are in the central nervous system and once the lyme peels off it heads straight to the brain. At least that is how it was explained to me..... I am repeating science that is above my head so I apologize if I'm getting it slightly wrong. I've loved a lot of Dr.'s since we started this journey but have also recognized I needed to move on from some of these Dr.s at a certain point. I not sure if that is the case yet for you.. but I would definitely be very cautious and take all the necessary steps to make an informed decision on how to proceed.

 

-Wendy

[SSS]

I'm sorry you are at this point :-(

 

Just wanted to add my first time recent experience doing a cyst buster (were you guys ever on them before, with your LLMD?)

 

I'm pulsing Tindamax, decent higher doses, on/off for longer stretches on, and it's been a bit astounding to me: I see, and feel, gobs of junk/disease/ a host of either parasites, Lyme, I don't know what,

and I have been feeling some viral flairs while 'on', too.

 

I am also on Bicillin shots 2x a week, hoping that is mopping up/killing what's being released. When I feel the viral flairs, I take L-Lysine.

 

If you've never been on cyst busters, maybe you are releasing all this -

 

Just a thought, sorry if gross.

 

SF Mom had great advice, too----

[Suzan]

Thanks guys, SF Mom, reading up on those links tonight....

 

S&S, I have done cyst busting before but that was back when I felt like crud constantly so I expected to feel horrible. I did notice some good herxing with the GSE so it's got to be some of what is going on. I need to increase detox efforts for one thing.

 

Saw our doc today and I'm feeling better, at least committed to keep hanging in there and trying but I will pay attention and to be sure it seems we are on the right path.

 

Susan

[Suzan]

We managed to get an appt with our neurologist who has treated the girls for lyme some in the past and gave dd10 her IVIG's. I'm glad we went and got dd10's reaction to strep and viruses documented. He respects our wellness doc and his vision for our treatment so he's interested in us continuing to see his protocol through for a while, not wanting to mess it up by intervening too soon.

 

But he did say she needed glutathione cream to help with the methalation pathways (she's already on a bunch of zinc) so we are going to add that. Then, if this does not help her get past the symptoms from the strep exposure, he will put her back on antibiotics (zythromax) along with our natural treatment for a while to get her stabilized. That made me feel good that we can still get some medical support from him if we need it while continuing on this path.

 

Susan

[philamom]

That's great Susan. Nice to have a plan B, and C, and D...

 

Sounds like an open-minded Neurologist. Very nice.

[lyme_mom]

After the past few weeks, I've become confused withour course of treatment. We moved to naturals and are using Deseret Biologicals homeopathic lyme treatment. Very powerful in the beginning but now we don't notice much. The doc says it's because there's not much lyme left to kill. But I started using grapefruit seed extract and that stirred everything up, I assume bursting some cysts.

 

Then dd10 got sick with the flu and strep and I got a virus (we thought it was strep but culture was neg.) and now a horrible sinus infection. I've been on antibiotics twice in the past 2 weeks and now I feel horrible again. Close to the old days with past lyme symptoms.

 

dd10 is pandasy from the strep with anxiety and unreasonable reactions and fears. In retrospect we noticed that she has been slowly backsliding since the end of January. I think the strep started coming back after we took her off the abx.

 

I don't know if this means our naturals aren't working and we need abx or if we've just found some hidden lyme and we are herxing and the desered biologicals will start to go to work on it again. I can't afford a lyme doctor and our wellness doctor. I'd have to pick one or the other. Our wellness doc has helped us more than anyone so I don't want to quit going to him. So far, I'm going to hang in there and see what we can do without abx I guess but I am concerned. It's very hard to feel so good and go back so far. It almost feels like starting over, but not quite that bad.

 

Good news in all of this is dd9 did not get sick. She is having "normal" lyme symptoms with twitchy eye lids and roving pain which I consider good since she never did have those symptoms before and it all came out as OCD and impulsiveness. She's improved the most between the three of us.

 

Susan

I would bet that the Deseret Borellia series is causing the immune system to go after lyme it did not recognize before. That's how it works apparently. So I would think it is a good thing. About four months ago we began experimenting with this remedy. My son who was treated for lyme successfully I thought (for two years) started to develop some symptoms that might have been lyme. He didn't do well on tests he should have done well on and he said one side of his face felt numb (where he had had bells palsy in 2006 due to lyme/bartonella). My llmd ordered doxy but my son is a real difficult patient and doesn't always eat breakfast so I wanted to have him tested energetically before undertaking doxy again. This nutritionist I use has a biofeedback machine that can test for lyme and infections. I figured I would see if she agreed that he still has lyme. She said he still has lyme in a stealth mode-it is evading the immune system. She tested which remedy would b best for him (including doxy). The machine said the homeopathic remedy from deseret is what he needed. I figured we can always start doxy but I would try this remedy first. You only have to give him a vial every three days under the tongue and there is no danger of killing gut flora (NICE). Anyway I wasn't sure it would work but thought we should try it. Pretty soon after he started bringing home A's in algebra, physics, other hard subjects. I asked what caused his improvement and he guessed it was the remedy (said he wasn't working any harder :-). So I had the test done on me and it brought up lyme and babesia (which I was treated for successfully before). I haven't had a symptom of lyme in two years but I am doing the treatment anyway and I think I am herxing. Its not bad but I feel a little achey and have sore muscles now and then. One day I felt down right awful. You do this series for two months and then you get on a maintenance thing once a week according to my nutritionist. Different energetic testing showed parasites are an issue so my son is doing that treatment now. I think parasites are likely a big factor in lyme based on thing i have read and people i have talked to. It may be why he still had some lyme. If the Deseret stuff works the benefit is that it teaches the immune system to recognize the lyme bacteria so it can fight it. Seems like that would be helpful in the long run. I am not against antibiotics at all b/c they saved us but I am intrigued by this homeopathic treatment that appears to be quite powerful. Its 48 dollars a box and you need two boxes.

[Suzan]

Lymemom...

 

Thank you for your experience with the series!

 

Our doc has us on it every three days but we've been on it longer than 2 months. I think I've been doing it for 5 months? It was very powerful at first but then I stopped noticing the herx. Maybe some of the lurking lyme could not be found by my immune system and now that things changed with being sick and the abx, the series is going after it again. I hope that is true. I'm glad to her that you feel it's beneficial and please keep me posted on how you do.

 

Susan