Good news and bad news

[KaraM]

I haven't been on the board as much lately. Partly because I haven't had as much of a need and partly because I haven' had time given a new job (which I was able to take because of the same reasons I don't have a need to be on the board). I do try to continue providing support in some ways to others. And please know I'm happy to receive emails if anyone who knows our history wants to tell someone else to contact me.

 

My dd has been off antibiotics since the beginning of March after three years of being treated first for PANDAS, then Bartonella and Lyme. She's been doing really, really well. Every now and then a behavior will creep up that I might question, but it never lasts. For the most part, she really has just seemed to get better and better. So this is all good.

 

We saw Dr. J a few weeks ago and he had the Lyme culture test run on her. He told us that sometimes this can take several months to show something, if it is there. Well, I got the results in the mail today and it is already showing positive. This is the bad.

 

So what do I do? Do I put her back on abx?

 

I believe Dr. J's philosphy is that you treat if there are symptoms. Her symptoms have always been neuro-psych....it's so hard to tell with an 11 year old girl if a behavior is normal or not....

Just the last couple of nights she's had some behavior regression around homework or reading at bed-time...stuff we haven't seen in a very, very long time and that ended with her saying over and over that she's " a terrible person." Again, we have not seen stuff like this in months, if not more than a year. It was really nothing compared to the past in terms of intensity or duration (although the first night lasted over an hour). But it did bring back a flood of memories for me.

 

I'd be grateful to hear people's thoughts.

 

Thanks,

Kara

 

 

 

[rowingmom]

Wow! Glad to hear your good news!

 

Our DD has been off abx for lyme/bart since the middle of April, but we are continuing herbal protocols. We are doing the full Buhner bartonella protocol for at least 9 months. I am making an appointment for a consultation with his associate.

 

Right now the protocol looks like this:

 

Astragalus 3x weekly,

sida actua tincture 1/4 tsp 3x daily,

japanese knotweed tincture 1/4 tsp 3x daily,

japanese knotweed powdered herb 1/2 tsp daily as tea,

houttuynia powdered herb 1.5 tsp daily as tea,

milk thistle and hawthorne daily,

as well as allicin 3mg 3x daily,

bolouke and Interfase daily (for biofilm).

Also daily as per our LLMD, taurine, phosphatidyl choline, magnesium taurate and calcium citrate, liposomal glutathione 2x daily, sublingual methyl B12 2x daily, P-5-P 3x weekly, L-methylfolate 3x weekly, NAC and l-glutamine 3x weekly, curcumin 3x weekly, Vit C daily. We are continuing with multiple probiotics and eat fermented vegetables. We pretty much follow the Wahls diet. I have also ordered a near infrared sauna to address the remaining infection with fever response.

 

According to Stephen Buhner (his books are wonderful, by the way) you don't ever eradicate lyme - there are too many hiding places. Just bring it to a place where the immune system can manage on it's own. If you are asymptomatic, the immune system is probably handling it. If symptoms creep in, it's time to address the infection again.

 

 

DD's symptoms are down to practically nothing, with just a tiny bit of ticcing in the evenings. She is so happy and helpful, and could dance and run all day if you let her. Her executive function is wonderful and I no long have to remind her to do any part of her morning or evening routines.

 

She has been having herxes with the ramping of Buhner's protocol. 5 days ago I brought her up to 1/2 (1.5 tsp) the suggested adult dose of houttuynia (she had been on full dosages of the other herbs while on the last part of her abx protocol). Being she weights 76 lbs, the LLMD thought this would be good. She had a big herx 2 days later. Shin pain, fatigue, headache, moodiness, increased ticcing. She was a wreck. Not being used to these reactions (they haven't been this bad since starting to pulse tindamax), my first thought was RELAPSE, but 2 days later and several epsom salt baths later she is back to baseline. I know she hasn't kicked bartonella yet as her titers are still positive.

 

We will not be discontinuing herbal procols for some time to come. Buhner actually suggests that some people may need to remain on low dosages indefinately. Check out his website. He is very free with his knowledge and sells nothing other than his books on the subject.

[SSS]

And THIS is why I'm afraid to do that test.

I'm sorry Kara.

I don't know what to say,

except there is a part of me that wonders/believes:

Lyme may never be fully eradicated,

and the idea is to beat down the infection enough

that the immune system can take over, controlling it.

But then....what if there is an immune stressor in the future?

Puberty? After having a baby?

Where I am at, we have seen 2 LLMD's, and both were adament

that they do not treat without symptoms.

Now....another theory:

If one is chronically infected for years unknown, or was born with these infections, impairing development

since infancy,

and treatment then ensues and is very aggressive, we have improvements, but,

can we really expect 100% all the way?

I'm just not sure, either.

My dd8 and myself are both off antibiotics, but still need support through supplements, sometimes herbs, sometimes medication.

[SSS]

RowingMom and I posted at the same time :-)

[sf_mom]

I would treat immediately if the slightest symptoms resurface and treat every illness entering the household like its bacterial. As you know, any new infection can really bring out the Lyme and start the downward cascade. Ultimately, you want her body to be able to handle the Lyme and so far it seems like she is doing a fairly good job. You might be pleasantly surprised at how well she does long term.

 

I envy your position 'off antibiotics' but I know I'll worry like crazy once we are finally there as well.

[rowingmom]

You've got it there! I feel like PTSD is setting in every time there is a little herx to the increase in herbal protocols. But as I faithfully chart (excel stacked bar chart) her symptoms daily, it's becoming more and more obvious that that is what's happening; herxing and not relapse. She caught the stomach flu from her brother a month ago, and other than a headache, nausea and one barf (in class - what mortification!), she was fine.

 

We tried removing all but one abx and Byron White herbals, 6 months into treatment. 3 months later she was not just relapsing a little, but fully back to square one. Which makes me think we might have a (tenuous???) handle on it this time. She is at, and remaining at, an all time low in both PANS and bartonella symptoms. And except for herxing, the basline appears to be stable.

 

I envy your position 'off antibiotics' but I know I'll worry like crazy once we are finally there as well.

Edited June 21, 2013 by rowingmom

[SSS]

We got to a point (after a long time, and multiple, high dose combinations)

where antibiotics didn't make a difference anymore-

no longer *worked*

or gave any more gains.

That does not mean we haven't had to continue healing the gut work, supplements for inflammation, adrenal health work (myself), etc.

[KaraM]

Thanks, everyone.

 

I am actually on herbals A-L complex for my Lyme.

 

My dd sees Dr. J. He doesn't really do the herbal stuff. I'm thinking I'll ask my LLMD the next time I see her what she would do for my dd and perhaps switch over to her or add her into the mix.

 

Dr. J. has the same philosophy - treat only if there are symptoms. The hardest part for me is determining if something is a symptoms. I feel like I over analyze every single behavior.

I haven't tracked her symptoms consistently for a couple of years now. But perhaps it's time to start. I'll at least get the notebook out, if not the excel file.

 

Kara

[rowingmom]

DD11 was taking A-Bart and A-L while she was on abx, as well as the part Buhner protocol. She was at 30 drops of each 2x daily before we weaned abx. For a while there we weren't going to see the LLMD every 4 weeks, and ran out of Byron White. The LLMD's assistant couldn't manage to get it in the mail with proper postage, so I ended up driving down, just to get the A-Bart/A-L. At that point DD had been off A-L/A-Bart for 2 weeks. When I reintroduced it at 10 drops 2x daily, we had a herx the next day that went away after 2 days. I can't believe that after 3 months of high dose BW, she is still herxing on it.

 

Our LLMD works pretty closely with Dr J. I think she visits him a few times a year, anyway. She really wants to try and treat with herbals alone - thinks this is possible. I told her I would be her first patient after we fix up DD11, but you know, I think I've fixed myself on the same protocol as DD . I love self-experimentation. I learn a lot from it.

 

Start charting. You will see if she is having new baselines.

[EAMom]

Hi!

 

I haven't read all the responses...but this is what gets me about these chronic Lyme naysayers that say infection doesn't persist after 30 days of antibiotics. You are the 3rd person I know of that has (or had a child) on antibiotics for 2-3 YEARS, yet off antibiotics for a couple of months, the culture comes up positive again. (There is actually a 4th person who I know personally, had just 30 days of antibiotics...Lyme culture positive). Why isn't there a study to demonstrate this, and put an end to the ridiculous argument that Lyme is cured after 30 days???

 

^okay vent done.

 

I don't personally have Lyme (neither do my kids)...but this is me. If the culture was positive, I would continue to treat. I like the idea of at least doing herbals, if nothing else. My issue with Lyme is, just because we don't think there are symptoms now (and it sounds like you think there may be) that doesn't mean she's not going to become full blown again if she gets a co-infection (not thinking just tick stuff, also strep, viral, puberty, anything).

 

And KaraM, are you also dealing with PANDAS....has strep ever been an issue? Is your dd on something to prevent that? We plan on keeping my dd on abs (for PANDAS/strep, not Lyme) until at least age 18. She's not symptom free, but pretty good, 90%. We just can't risk another strep infection (Azith also offers some protection against mycoplasma, which is nice) since her big PANDAS episode at age 7 was life threatening (anorexia) and we are still not symptom free (even after 3 HD IVIG's), although her baseline has been pretty stable for the past year.