NEW TO THE FORUM

Hi echo23 - welcome to our community!

I am a fellow Canadian from BC.

That was a lot of typing to do! So sorry you have been through so much!

I know who Dr. Klinghardt is, but don't have a lot of knowledge regarding his protocol.
Is your ND helping you with the Klinghardt protocol, or are you doing it on your own?

Yes, personality changes do happen for some of us...in my case...I feel like the 'old me' is coming back now.

Yes, you can be doing too much as far as treatment goes. If you hit it too hard and fast - and can't keep up with detoxing, you could have a severe herx...which would be debilitating.
Herxing - while it means it is killing the bacteria (which is a good thing) - it is also a sign of inflammation in the body - which isn't good.
That's why detoxing is so important...we need to flush out the toxins...and try to keep on top of it.

For me, at first, it was more difficult to gauge whether I was having 'flares' or herxes. I have a pattern of flaring every day - late afternoon/evening. It would mean an increase in my symptoms for a few hours. This pattern existed prior to any treatment.

My herxes are an increase in symptoms, and also new symptoms that don't follow the pattern of my flares. They appear anytime of the day or night...and last more than a few hours. Sometimes (especially in the beginning when my bacterial load was higher and I wasn't effectively detoxing) they last several days. If I back off the meds, they subside.

The side effects from meds I have had...are usually one or two things happening and not following the pattern of the flares or herxes.
For instance...with Lyme and co's I have not had any bowel issues. But, when I went on Ceftin....things were a bit on the 'loose' side for the entire time I was on it. They were independent of my herxes. When i stopped the Ceftin, my bowels were back to normal.

Sometimes, it is difficult to know the difference. I had a few rashes when I was on zithromax...and then again on biaxin. My Dr. thought it was an allergy, so discontinued those meds.
Several months later, I am back on the biaxin, giving it another try...and no rash so far. (I think I'm at 5 weeks now)

We are now thinking that it may have been a bartonella rash - i.e. a herx as the zithro and biaxin do have an effect on bartonella.

I hope you find this to be a knowledgeable, supportive group here...and stick around.

I'd also like to point out the thread at the top of the page titled:"New to Lyme?..Start Here!". Even though you're to new to lyme, you are new to the forum...and there is a lot of good information in there...symptom lists, info on probiotics, detoxing suggestions, and more!

Feel free to keep asking any questions you have. We'll do our best to answer them.

Welcome echo23!!!

Girlie did such a phenomenal job covering ALL the bases that I just don't know what to say right now lol

Yes, it's overwhelming but we're here to help lighten your load. I'm glad you're not giving up because there is life after these infections! You can heal from them. It takes work...and time....a LOT of time.

I, too, am finally starting to feel like me again. I remember just this past summer mentioning that I didn't know who my emotional self was anymore and many on here chimed in with similar feelings. Dealing with these infections can be all-consuming. You'll get yourself back - I promise. Just keep up the good fight.

I completely forgot that tomorrow is the solstice. I will be blessed with the company of my very young grandson. Your wish for me came true :) And, I wish the same for you!

echo23 said...


1. Is the Herx longer when you are doing a protocol rotating drugs?
2. Is it normal to have personality changes?
3. Can you be doing too much or too many treatments?
4. how do you know the difference between herx and side effects?

Welcome echo23

We are Canadian as well, in southern Ontario with access to an ILADS LLMD in NY, although we don't use her any more.

Our daughter was treated for 2 years for Igenex positive bartonella. Her Canadian ELISA was negative, while her Igenex WB was IND (there but weakly) for lyme specific bands. Babesias were negative.

After reaching a plateau at 80% improvement our LLMD discharged us and I began treating K (and myself because the LLMD had clinically diagnosed me with the same infection; my PCP and endocrinologist diagnosing "perimenopause") using Buhner's herbal protocols, first for bartonella for 7 months and then with the addition of some of the herbs from the babesia protocol as well.

I know others here have seen K's timeline, but here it is again; just to let you know that even the harder cases can be healed, and in my opinion with herbs and the proper supplements/diet alone:

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

2004 - Dx ADHD, SPD (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. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%

As for your questions:

1. Is the Herx longer when you are doing a protocol rotating drugs?

I would think that by rotating drugs (and causing die-off of different organisms at different times), that you may be continually producing different herxes. If herxing and inflammation becomes continuous, the body will not be able to dispose of or regenerate damaged tissues.

2. Is it normal to have personality changes?

K underwent significant personality changes as recorded in her timeline. Most I believe were produced by brain inflammation caused by her infections. The addition of anti-inflammatory herbs to her antibiotic protocols were very helpful.

3. Can you be doing too much or too many treatments?

If you have been clinically diagnosed as having certain infections, treatment for those would be your first step. If you are not seeing resolution of symptoms after some time, you may need to start treating for one or more of the common coinfections.

You need to add only one item at a time to your protocol and give it time to produce some result (either a herx or an improvement). Only in that way can you keep track of what is effective and what is not.

4. how do you know the difference between herx and side effects?

A herx reaction is generally a ramping up of existing symptoms, or an introduction of symptoms that are used in the clinical diagnosis of the infection:

ie for babesia: air hunger, cough, thigh pain, chest pressure, sweating, fatigue, loss of cognitive/executive function;

for bartonella: rage, depression, light/sound sensitivity, anxiety/panic attacks, bone pain, foot pain, headache, neck pain at the base of the skull (encephalitis), fatigue, palpitations.

A side effect would be something new and unexpected for the infection you are trying to treat.

I know it is pricey, but I would run a full coinfection panel through Igenex. From the description of your psych symptoms I would say you are also infected with bartonella and possibly one of the babesias (which would explain the improvement you see from the antiparasitics).

Thanks for your reply and for taking the time to post your daughters history. I'm thankful that she is well and her future is bright.

I have a couple questions
what is CD57 45 and PANS

When you explain the herxing that way its easier for me to understand. I think that because i rotate the drugs every two weeks that i'm continuously herxing when i start to even out i move onto the next drug. I know the protocol i'm on is hard on people many quit. i knew what i was in for but i'm about half way through i think or hope.

Funny you should mention the full co-infection panel my ND just called and my results are in; my appointment is Dec 30 then i'll know more.

When I am experiencing neurological symptoms it can be hard to retain or understand the information i'm reading so thanks all for your patience.

As for EMF they are currently trying to put a smart meter in my house and i don't know how to stop them or if i have the energy too. i just keep ignoring them (have an old house and they have to have me let them in to change it). funny feels like i don't even own my house when it comes to this stuff

Okay, Echo.

I have relatives in Enderby. You do know that the Okanagan has cold winters, too? Not quite as cold as Alberta, but still cold. But the summers make up for it. I love going to the Okanagan in the summer.

My cousin is in Vernon (not far from Enderby) and is currently trying to get tested for LD. There is a LLND there and I'm pretty sure he prescribes antibiotics. He used to have his practice in Maple Ridge (Lower Manland) but I heard he's in Vernon now.