Good evening to everyone,

This is my first post on this forum although I must say that I have been coming to this site since becoming ill in July 2013. Over the last 4.5 years I have mainly treated the Lyme, Bartonella and Babesia agressively with oral antibiotics and a few herbals. My symptoms are mainly neurological, burning sensations all over my body, the worst being my scalp, left eye pain, brain fog, random rib pain and tingling on my face. I am fortunate that up until know my joints are functioning as they should I have made progress over the years but just cannot seem to get past 60%. Unfortunately the antibiotics that I am taking are effecting my hearing and I now have significant hearing loss and tinnitus in both ears. As a result I am attempting to wean off the antibiotics very slowly with the hope that I may one day transition to all herbals. Unfortunately it seems that whenever I cut down on an antibiotic my symptoms increase such as ice pick like headaches and severe burning on my scalp. So at the moment feeling like I am caught between a rock and a hard place, as many of you I am sure can relate to. I am also losing weight, 28lbs since becoming sick. This is certainly due to the strict diet I am on...no sugar, gluten, dairy, caffeine, yeast, alcohol..low carbs. So, I am wondering if any of you have similar neurological symptoms and if so, how are you doing? I am also wondering if any of you might have a shake/ meal replacement that you would be willing to share? I really need to gain some weight back...never thought I would ever be saying that thank you all so very much for sharing, it is appreciated.

Aurora,

Hello and welcome! I've had all the symptoms you've mentioned. Not sure if I'd call my headaches icepick pains or not, but they used to cause eye pain. Thankfully, now that I'm peri menopausal, my headaches are much less frequent than they used to be. I have the burning and the scalp pain, too. The scalp pain is new for me. I don't remember ever having it like this before. I'm having it right now - the scalp pain and the burning pretty much all over - right now it feels like cytokine inflammation. I've been wondering all day what's triggering it and if there's anything I can take that would make me feel better. When I get like this, I have about a 50/50 chance that whatever I take will make it hurt worse instead of feel better.

Wow! Four and a half years treating all 3 B's aggressively on a strict diet and still struggling. I'm so sorry. There must be a reason why. Have you looked into other issues like coexisting viruses, other bacteria like mycoplasma or chlamydia pneumonia, mold exposure (current or past), or any of the other factors that can hinder recovery?

RealFoodRebel has a recipe for a nutrient dense green smoothie. I've made it a number of times without the moringa and with the addition of about a 1 inch piece of fresh ginger. The ginger gives it a kick. The recipe is here: realfoodrebel.com/super-healthy-green-smoothie/

HI Girlie and Walking by Faith and thank you for the warm welcome and thoughts. I suspect it's the azithromycin and SMZ TMP that is causing the hearing issues. It actually sounds like cicadas in my ears. Unfortunately most of the foods I avoid is because they increase my neuro symptoms. I eat avacados and almonds daily as well as whole foods typically organic vegetables and meat.

My current protocol consists of azithromycin, SMZ TMP, amoxicillin, atovaquone, A Bart, MC BB 2, ld naltrexone, fluconozole, Candex, quercetin, and assorted probiotics. I also take chlorella and activated charcoal as needed as well as use my sauna several times per week. I just added the two herbs mentioned above this week so I am hoping I will be able to slowly make the transition by tapering the azithromycin and SMZ TMP.

Walking by Faith, please know you are in good company🙂 My scalp is burning as well. It's strange because when I stop the azithromycin I get severe headaches alternating with burning in the exact spot where the headache occurred. I am in the process of changing llmd's and discussed the possibility of mycoplasma. As a result I have ordered Byron white A Myco. Something is certainly holding me back and I am hopeful that my new doctor will help put the pieces together. Thank you for the link and I will definitely check it out. Are you treating with herbals or antibiotics or a combination thereof?

Aurora2013 said...
HI Girlie and Walking by Faith and thank you for the warm welcome and thoughts. I suspect it's the azithromycin and SMZ TMP that is causing the hearing issues. It actually sounds like cicadas in my ears. Unfortunately most of the foods I avoid is because they increase my neuro symptoms. I eat avacados and almonds daily as well as whole foods typically organic vegetables and meat.

My current protocol consists of azithromycin, SMZ TMP, amoxicillin, atovaquone, A Bart, MC BB 2, ld naltrexone, fluconozole, Candex, quercetin, and assorted probiotics. I also take chlorella and activated charcoal as needed as well as use my sauna several times per week. I just added the two herbs mentioned above this week so I am hoping I will be able to slowly make the transition by tapering the azithromycin and SMZ TMP.

Walking by Faith, please know you are in good company🙂 My scalp is burning as well. It's strange because when I stop the azithromycin I get severe headaches alternating with burning in the exact spot where the headache occurred. I am in the process of changing llmd's and discussed the possibility of mycoplasma. As a result I have ordered Byron white A Myco. Something is certainly holding me back and I am hopeful that my new doctor will help put the pieces together. Thank you for the link and I will definitely check it out. Are you treating with herbals or antibiotics or a combination thereof?

What's SMZ TMP?

EDIT - I see it's Bactrim

seems to me the key to getting well is consistency and persistence. sure it could take years but you have to keep at it however long it takes. of course you won't get better if you say have babesia and never take any anti-malarials so what you take is also important.

too many folks stop treatment before full remission and just live with whatever they can. hard for folks to get their heads around the fact that you need to treat these infections sometimes years to eradicate them.

Aurora2013 said...
It seems like everyday I am online reading about the latest news on Lyme and friends, hoping to eventually one day see that a breakthrough has been made. It would be great if certain protocols were guaranteed to work but unfortunately that's not the case...at least not at the moment. Having said this I have heard and read great things about the Buhner protocol and am tempted to give this a go should the Byron white/beyond balance fall short. I agree with you completely about the cytokines induced inflammation. For me, it feels as though the skin on my face is tightening and being pull in opposite directions....I am pretty sure it's due to inflammation.

Aurora,

Tightening in the face was one of my first symptoms. I've always pinpointed the date that I first got sick as Oct 2009, but now that I know it was Lyme and co, I realized I'd had symptoms long before that.

When I was in my mid-30's about 3 years or so before that time in 2009, I started noticing problems with my face. My face felt tight and burning not just on the surface but underneath the surface of the skin, in the tissues. My face felt like it was cringing underneath the surface. It also felt dry like my face was screaming for moisture, even though the surface of my skin was quite oily back then. For several years, I went through all kinds of moisturizers and face creams trying to find something to relieve the misery and nothing really worked. My face felt like that for almost 10 years and then stopped. I do not know why it stopped when it did, but I hope that symptom doesn't come back ever. It was miserable when it was at the worst. It would get red, hot, and inflamed. I even went to Mayo in 2011, the year that symptom was at its peak. Mayo didn't have a clue. They never even mentioned Lyme disease or any of the coinfections. Back then I thought I had some kind of yet to be identified autoimmune disease.