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Want to take a break from abx, but scared.

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Posted Yesterday 1:11 AM (GMT 0)
Do people ever take breaks from antibiotics? Some days I feel like I can't stand to put any more abx in my body, but I'm afraid to stop because I want so badly to be well. I can't tell if I'm herxing continuously or having bad med reaction. Symptoms started in May 2014, started abx early August, CDC and IgeneX positive for Borellia. Have taken doxy and ceftin. Started Flagyl a week ago. Starting slow with Flagyl, but terrible muscle pain and twitching. Discouraged.
Posted Yesterday 1:26 AM (GMT 0)
I used to reduce my antibiotics when I felt like the herx was too much and too long... I checked with my Dr and he said it was ok. Then I saw a video of one of the top LLMD's - either Horowitz or Burasacano and he was saying that taking a break was fine, but go off completely - not reduce it. So now that's what I do - for two or three days every few weeks I take a break and I focus on detoxing, liver support and replenishing the bacteria in my gut with lots of probiotics.

Also, it seems that some members' protocols have breaks... Like 5 days on and weekends off, etc

But always check with your Dr.
Posted Yesterday 1:26 AM (GMT 0)
I was taking one day off a week, and that seemed to work. On that day, I tried to detox a lot, but I got slack about detoxing, so now I'm treating every day.

You are probably herxing, which means you need them.

If you stop abx, I would substitute herbal abx, or antimicrobials. If you started abx in August, it's WAY TOO SOON to stop. Sorry.

If you stay with pharmaceuticals, you need to slow way down, and do a lot of detoxing. Herxing is horrible, but Lyme is worse.

We've had a few posts lately about stopping abx; you may want to look at them.

Margaret
Posted Yesterday 1:38 PM (GMT 0)
Thanks. What abx work best for you? There are no Lyme literate docs here and no support groups. I feel like my body is a torture chamber - and I want to get out. Do people really get better? There is so much conflicting advice. How do you sort it out?
Posted Yesterday 4:04 PM (GMT 0)
After 2 years of multiple/combo abx treatment for bartonella, with an improvement to 80%, our daughter was weaned from abx.

I was concerned about relapse so with the blessings of our LLMD we transitioned to Buhner's full bartonella herbal protocol. Although only able to make dosages of 1/4 of those recommended by Buhner our daughter remained stable at 80% for the next 8 months.

Our LLMD is not versed in the use of herbs, so I am now managing her treatment with the help of Buhner's associate Julie McIntyre.

It wasn't until I added the full babesia herbal protocol to the bartonella herbs that we discovered (because of herx symptoms) her babesia infection (which had previously tested negative through Igenex), and which our LLMD then clinically diagnosed.

With the combination herbal protocol our daughter has now reached 99% improvement. She is a normal 13 year old. Full of energy, excellent student, happy and helpful. I never in my life thought that she would heal as well as she has.

Here is a list of her timeline and previous symptoms. She has struggled throughout her life:

DD13 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, sensory disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root and bidens. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%

Low dose (1/4 of the recommended) combination herbal protocols have brought us healing. They are just as potent as abx, but because herbs contain many constituents where abx contain only a few, bacteria are unable to mount resistance.

Don't be afraid. You can get better.
Posted Yesterday 7:32 PM (GMT 0)
Thank you rowingmom. I'm glad your daughter is doing so well; I hate thinking of children going through this. It's helpful to hear of positive outcomes. I haven't been tested for co-infections but suspect I may have one. I'm about to start adding herbs from Buhner's protocol. Waiting for herb order to arrive. After a long illness in 2007-8 I worked my way back to full health, so getting this felt like a recurring nightmare. If I fought my way back to health once I guess I can again.
BTW I'm also a rowing mom - rowed crew in college - is that what you mean by rowingmom?
Posted Yesterday 7:49 PM (GMT 0)
Rowingmom—
I just wanted to share how much I appreciate you sharing over and over your daughter's journey and information you acquired in that experience. It takes time to post and provide explanations and information and you're doing a wonderful service by continuing to share. And I think you're bringing up an important issue that the lyme & co-infections can often complicate treatment. It is so important to pay attention to the symptoms (which your spreadsheet organizes so well) and allow adjustments over time as things evolve.

ArkansasLyme—
I agree with the other posters. I think you have to listen to your body and if you need a break you need a break. But be sure you and your LLMD are in sync with what you're doing. Please let us know how things are progressing!

-p
Posted Yesterday 8:17 PM (GMT 0)
Sometimes taking a week long break - but detoxing heavily is just what a person needs - but do it with your doctor knowing what you are doing.

I would also like to have you - Arkansas Lyme - send me an email me if you would. I'm trying to get Lyme recognized in Arkansas and would like to speak with you on this.
Posted Yesterday 8:25 PM (GMT 0)

ArkansasLyme said...
Thank you rowingmom. I'm glad your daughter is doing so well; I hate thinking of children going through this. It's helpful to hear of positive outcomes. I haven't been tested for co-infections but suspect I may have one. I'm about to start adding herbs from Buhner's protocol. Waiting for herb order to arrive. After a long illness in 2007-8 I worked my way back to full health, so getting this felt like a recurring nightmare. If I fought my way back to health once I guess I can again.
BTW I'm also a rowing mom - rowed crew in college - is that what you mean by rowingmom?

Yes, I began rowing crew in high school (8's) then university and during the summers (4's) then took some time off (12 years) to race bicycles (velodrome, crits, time trials, road racing) in the southern states (Louisiana) and now back to master's rowing (single, quad and double). I love it, can't live without it.
Posted Yesterday 8:30 PM (GMT 0)

Pirouette said...
Rowingmom—
I just wanted to share how much I appreciate you sharing over and over your daughter's journey

I'm sorry it's over and over again. I know - I feel like most of you guys must be sick of hearing it, but our experience is the only one I know and so when people ask the same questions, I can only give the same answer.

I just want people to know that what we have been through hasn't been easy; just like what they are going through isn't easy. But that if I found a way out for myself and our daughter, they can too. So many seem disheartened, I hate to pass them by without responding.
Posted Yesterday 8:41 PM (GMT 0)
I can only speak for myself, but since I can't even remember what I ate yesterday, it's always fresh for me! ;) HA!

Another thing I wanted to mention—is that your perspective is SO VERY unique. Most of us here are challenged with the inanity of the illness AND also being our own caretaker. You, as a caretaker, walked through your journey with your daughter (albeit horribly painful, I'm sure) with your full complement of faculties. ;) So your thoughts and information has clarity and awareness that I know I don't possess. So, thanks again.

-p
Posted Yesterday 9:19 PM (GMT 0)

Pirouette said...
You, as a caretaker, walked through your journey with your daughter (albeit horribly painful, I'm sure) with your full complement of faculties. ;) So your thoughts and information has clarity and awareness that I know I don't possess. So, thanks again.

Not so.

I started experiencing symptoms when our daughter was 6. Both my doctor and an endocrinologist diagnosed me with perimenopause symptoms and prescribed beta blockers which I declined; thus began my investigation into perimenopause and bioidentical progesterone.

I had no idea that my symptoms:

crashing fatigue (having to sit at the top of stairs), palpitations, hotflashes, chills, derealisation/depersonalization, bipolar-like raging, numbness in extremeties, headache, constant flu-like pain, brain fog so severe that I couldn't remember how to turn on a light switch, how to turn off the car, or even find my way to the grocery store (I would just keep driving and eventually remember), panic/anxiety attacks that ended me in ER a couple of times, pain in my feet, elbows and knees, nausea, loss of libido

were not likely due to perimenopause.

It wasn't until our daughter's LLMD mentioned that they were most likely due to what she believed to be congenital infections passed from me to our daughter that I understood. This explained everything. Why simply balancing hormones helped a bit, but in no way completely. Why our daughter was sensitive from birth and had severe reactions to her vaccinations; her immune system already being compromised.

I promised myself that I would go back to the LLMD after we were finished with our daughter's treatment and get treated; but when I started dosing myself with herbals (the same dosages as I was giving our daughter) and responded in kind (herx for herx), and then found improvement along with her; I realized I had found our answer.

I was sick, although not bedridden, and now (like our daughter) I am better. We both remain on low doses of both protocols. I don't care if we have to continue this for life, the improvement has been spectacular for both of us.

So when I say "we have seen good improvement with herbals", I don't mean the royal "we", I actually mean the both of us.

Believe me, I have been as compromised as many of you. And although I have not been tested for any infections, merely clinically diagnosed by our LLMD, I feel my improvements are a testimonial for herbal treatment, and well clean eating, detoxing, and exercising to capability.
Posted Yesterday 11:31 PM (GMT 0)
If you suspect you have a co-infection, please get tested.

I came up with mono as a co-infection (had it when I was a teenager). Dr. told me to stop taking abx. I felt so much better once I did, but I had already started herbal protocol.

You have to make yourself the priority. Everything you put into your body should be helping you get stronger, not just trying to kill what's in you.

Best of luck.
Posted Yesterday 11:40 PM (GMT 0)
Thank you all for your replies. They are helpful, encouraging and I'm grateful you took the time to tell your stories Rowingmom. Traveler, I sent you an email.
Blessings on you all.
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