Need advice...again!

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tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/29/2018 7:42 PM (GMT -6)   
Me again! I feel like I am over posting!! I can only hope that by some miracle April is a better month then March! Anyway, so many of you have been so helpful and so kind...thank-you! I am still having major neurological symptoms (headaches, neck pain, spine pain, pins and needles, anxiety) took Rifampin 2 days and things got even worse couldn't sleep second night, lots of panic (sorry if this is all a repeat for those of you who have ready my numerous other posts!!) I stopped Rifampin, last time I took it was Monday am. Do you think I could still be herxing from that? Although things weren't good before I took it either but just SO much worse after. My llmd wants me to start Bar-1 (cat's claw, smilax, Pau D'arco, Burdock, blessed thistle, mullein, oregon grape). I've heard it can be strong. Should I start this even while I am doing so badly? I have no idea what is a herx or just the nature of the infection! I'm worried if I don't do anything for Bart it could get worse, yet at the same time I'm worried if I DO anything for Bart it will get worse!!! I'm a mess! Does anyone have any suggestions of medication that could help with nerve pain and all the scary things going on in my head (anxiety, panic, depression, scary thoughts)? I was considering trying Amitrytiline or gabapentin, I really don't want to take anything like that but the brain stuff is really scaring me!! Thanks so, so much for reading all this again!! I'd be lost without all of you!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/29/2018 8:07 PM (GMT -6)   
First of all - you are NOT over posting. That's what we're here for....so please don't suffer in silence and not reach out...okay?

So, I would give it a few more days before adding in the Bar-1.

You could give the Gabepentin a try. I did - twice. Didn't see a difference...but I wasn't willing to max out on the dose. Without checking my notes - I think I got to 1500 mg daily (600-300-600)

I decided to stop because I was having some days with periods of feeling normal prior to starting the Gabapentin...and it wasn't helping at all...in fact...I kind of dipped down when on it (it seemed)

So, I've just about weaned off it now... I can always try it again..another time.

If Gabapentin doesn't work, there's also Lyrica.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/29/2018 10:45 PM (GMT -6)   
I am so scared! My headache has gotten so insanely bad! It's like someone is squeezing the life out of me! It's mainly in the back of my head, but all day every day the headaches have been torture moving around my head...but this one is so, so bad! I just can't take this!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/29/2018 10:52 PM (GMT -6)   
Tonya - are pain relievers not helping your headache? ie aspirin or tylenol?

You’ve been suffering for many days now - Im thinking you should consider stopping treatment for awhile and get back to baseline.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/30/2018 7:11 AM (GMT -6)   
I have stopped treatment! The last day o took the rifampin was Monday! I stopped doxy too. My head pain last night had me curled up crying with ice on the back of my head! The pain usually comes and goes throughout the day and before doing those 2 days of rifampin it would always be better in the evenings. Now it's constant and so intense! I've tried aleve. Advil, Tylenol, increasing magnesium, gaba, skullcap, lemon balm, l-theanine, cbd and nothing helps! I took Ativan last night and that at least helped with my sleep. I don't know what to do I can't go on with this kind of pain!

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 276
   Posted 3/30/2018 8:38 AM (GMT -6)   
I don't know if this would help, but when I have a headache, I take ginger. It's probably not very strong though.

Have you ever tried artemesia or artemesinin? Artemesia annua always seems to calm down my symptoms and make me sleepy.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/30/2018 9:33 AM (GMT -6)   
Personally, if I were in your condition, I would wait and keep detoxing and taking anything anti-inflammatory like fish oil, curcumin, quercetin, and antioxidants like Vit C.

Bar-1: I've never taken this. I know your doctor recommended it, but I would not recommend a formula for someone with severe herxing, especially a formula that is expected to be strong and causes herxing.

Only you can decide what to do. I would recommend getting Stephen Buhner's books on Lyme and coinfections, if you can afford them. They are reasonably priced. You need to have reference books like those, so you can learn more and be able to help yourself with or without a doctor. In my opinion, doctors tend to shy away from Buhner because they can't control him, and he puts the power in the hands of the patient. Doctors like patented formulations because they know exactly what and how much the patients will be taking, and therefore the doctor is in control. IMO, what is safe and convenient for the doctor may not be safe or productive for the patient. That's why self-education is so important with these infections. For most on this forum, treatment has not been short or easy. Many are like you and have complications that hinder treatment and make getting well more complicated.

Buhner outlines ways to reduce cytokines which cause inflammation and symptoms, ways to correct the abnormal immune responses that the various infections cause, ways to support your organs that are being damaged, and lastly ways to kill the infections and stop their activity.

If I were you, I would continue taking anything you already find helpful and the skullcap and lemon balm you mentioned. I assume it's Chinese skullcap. If it's American it won't work. If you're not taking milk thistle and hawthorn, start those to protect your liver and heart. If you haven't tried kudzu root, try it. It has helped my head symptoms. I'm using a tincture - 15-20 drops. Red root may possibly help your specific symptoms as well. Peteza said that helped her head pressure and pain. If you have problems with blood coagulation, skip the Red Root. Buhner says Japanese knotweed can specifically help brain and head inflammation, but some are sensitive to it, so start slowly.

You could get the following herbs from Buhner's trusted sources (Woodland Essence, 1st Chinese Herbs, Mountain Rose Herbs, etc):

Japanese knotweed (he prefers whole herb in powder form from 1st Chinese)

Danshen/Chinese skullcap combo - Woodland Essence has this

CSA Formula and Houttuynia OR IHA Formula and Sida Acuta (woodland Essence has these)
Either of those groups will treat both babesia and bartonella.

Start with small doses of Japanese knotweed and danshen/skullcap and increase slowly until you feel better or worse. Then slowly add TINY doses (start with one drop) of whichever formula you get and slowly increase. Next, add the companion herb with the formula you chose.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 3/30/2018 9:50 AM (GMT -6)   
tonyaraven said...
I have stopped treatment! The last day o took the rifampin was Monday! I stopped doxy too. My head pain last night had me curled up crying with ice on the back of my head! The pain usually comes and goes throughout the day and before doing those 2 days of rifampin it would always be better in the evenings. Now it's constant and so intense! I've tried aleve. Advil, Tylenol, increasing magnesium, gaba, skullcap, lemon balm, l-theanine, cbd and nothing helps! I took Ativan last night and that at least helped with my sleep. I don't know what to do I can't go on with this kind of pain!


That’s just too much... I’m so sorry you’re suffering like that.

I would not start Bar-1 or any other treatment until this calms down some.

((Hugs))
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1682
   Posted 3/30/2018 10:26 AM (GMT -6)   
tonyaraven,

I will say this in regards to herbal treatment. I started the full Bartonella protocol with the Japanese knotweed, danshen/skullcap combo and red root. I took those for many weeks and was scared to add the "killer" herbs for fear of herxing, as my symptoms were already bad. Another forum member encouraged me to add the antimicrobial herbs, so I added IHA Formula. I think I started with 1-3 drops 3x day. At first I had some new symptoms but nothing awful or prolonged. After a while, I noticed some improvements in specific symptoms for about 2 weeks. I then added Sida acuta. My progress has been very up and down. I'm very sensitive and herx most of the time. I seem to be very toxic. I also had toxins from mold exposure.

My point is, to get symptom relief as quickly as possible, start with Japanese knotweed (small doses) and the danshen/skullcap and other supportive herbs. Knotweed does cross the blood brain barrier and is mildly antimicrobial, so don't ramp up too fast. But don't wait many weeks to months before adding the herbs for bart and babs, as those will likely help your symptoms IF you start those with tiny doses and slowly increase to avoid unnecessary herxing.

Just for reference, I'm in my 10th month of treatment and I'm only at 4 drops of Sida and 6 drops of IHA. I'm unusually sensitive, but the herbs are definitely killing something because I get lots of die-off symptoms.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/30/2018 11:28 AM (GMT -6)   
Thank-you so much for all your input and your support...and thanks Girlie for letting me know I'm not over posting!! From all of you! Walkingbyfaith, I am going out to my llmd's office and will ask about kudzu and japanese knotweed. I also noticed this am that my tongue has a very thick coating on it. Even after I brushed it there is still a lot of white that won't come off. I wonder if I am having a medley of things going on! It's so hard to stay strong when one feels this bad this long!

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 619
   Posted 3/30/2018 12:13 PM (GMT -6)   
Tony - coming from someone who just recently got out of a severe neurological herx/episode, I recommend getting yourself stabilized before you resume or start any other treatments. Your detox pathways are not working properly and doing any type of killing right now would be pretty bad.

Not only do I agree with the detoxing that has already been mentioned, but also going on a very vegetable heavy diet and excluding sugar, dairy, gluten, and anything processed and artificial. You really have to get those pathways going good again. There is nothing better than a proper diet to get things turned around to the right direction.

Not saying this will work for you, but here is what I did to get on the right path rather quickly. My last day of Flagyl was 2 weeks ago to the day. My last day of all Abx was 6 days ago. 2 days before I stopped all abx, I went on a heavy green diet with heavy detoxing. Within a couple days I started feeling better. Within 5 days my anxiety subsided. I can actually go and do things now and am sleeping well. I plan on adding in herbs slowly next week.

I highly recommend 2 books for you.

The Wahl's Protocol
Green for Life

Good luck!

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/30/2018 3:15 PM (GMT -6)   
Thanks Hoagie! I'm already gluten free, and for the most part sugar and dairy free, but I do cheat with the sugar and dairy a little bit. When one feels so awful it's hard not to just give up and dive into a carton of ice cream (not that I do that, at least not a whole carton!!!) I eat a lot of veggies, but I could definitely do more! I will check out those books. Thanks!

Hoagie
Veteran Member


Date Joined Jul 2017
Total Posts : 619
   Posted 3/30/2018 4:23 PM (GMT -6)   
tonyaraven said...
Thanks Hoagie! I'm already gluten free, and for the most part sugar and dairy free, but I do cheat with the sugar and dairy a little bit. When one feels so awful it's hard not to just give up and dive into a carton of ice cream (not that I do that, at least not a whole carton!!!) I eat a lot of veggies, but I could definitely do more! I will check out those books. Thanks!


I hear ya.

The main reason I say this is because some of these foods are inflammatory. I've got active inflammation surrounding a lesion on my midbrain. When I herx from antibiotics, it's causing more inflammation and thus the crazy neuro symptoms. But, I've also noticed certain foods do this to me as well. Dairy, sugar, and corn cause a bigger inflammatory response. The first thing I notice is my tinnitus gets louder. Then my movement gets worse.

My belief is that you have such brain involvement that the abx is causing too much die off for you to handle. And by eating dairy and sugar (ice cream) you are compounding the issue. The best way to detox the brain is good old sleep. I know you said that you are dealing with a stint of insomnia at the moment. I go through this too. But anything you can do to start getting that inflammation down right now will help.

I recommend some golden milk before bed. And if you have it, diffuse some lavender essential oil next to your bed at night.

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 150
   Posted 3/31/2018 4:26 AM (GMT -6)   
WalkingbyFaith said...

Japanese knotweed (he prefers whole herb in powder form from 1st Chinese)


The mature leaves of Japanese knotweed contain lots of oxalic acid which in high doses can be toxic.
I'd prefer ingesting the roots and the young shoots.

Casa11
Regular Member


Date Joined Jul 2017
Total Posts : 223
   Posted 3/31/2018 3:29 PM (GMT -6)   
Hey, so sorry you’re feeling so bad for so long! I deal with those symptoms too. It sucks!

Sometimes I feel like nothing I’m doing is helping at all, but I think it’s all relative. I’m still having these symptoms, but not always as severe or as constant.

My natural practitioner put me on Astaxanthin awhile ago . It’s got all kinds of benefits, including being anti inflammatory & antioxidant. I can’t say for sure but I do think it helps over time. It’s important to get a naturally sourced product though.

I’ve also increased my turmeric a lot , and always take it with black pepper, or the capsules that include black pepper .

I also take 3 homeopathic mixtures. They were customized for me, so I can’t recommend a particular product, but , believes it or not- they really help me feel less toxic. They work to keep my organs & lymphatic system working ( as well as having been customized for other things) .

I know I’ve seen homeopathic mixes online that are meant to help the organs & lymphatic system. Might be worth looking into. Once I began using them regularly I really noticed a difference in how I detox. I take them 2x a day, but if I’m feeling especially toxic I take them more frequently.

As far as the mental stuff, I started taking pharmaceuticals awhile ago. Tried so many natural products first, but I finally couldn’t take it anymore. I take hydroxyzine, Ativan , and Wellbutrin- I know the Wellbutrin can cause more anxiety for most people, but I can’t take most antidepressants- they make me REALLY crazy. Wellbutrin is the only one I can handle, so I begged my doctor to let me try it. It might not be something you’d want to try though.

I wish I could say the meds totally relieved my mental symptoms, but they don’t. They’ve taken the anxiety & depression & feelings of not being able to do this anymore down a notch though. And every little bit helps!

Really hope you get some relief soon.

tonyaraven
Regular Member


Date Joined May 2017
Total Posts : 398
   Posted 3/31/2018 4:21 PM (GMT -6)   
Thanks Casa11! I'm taking quite a few homeopathic remedies for the lymph, liver and anxiety! My cupboards look like I own a pharmacy or supplement store!! I'm sure everyone here feels the same! It's so very depressing when one is spending as much money as most of us are and not getting over this! Last night I was feeling hopeful that things were calming down only to wake up and know that that's not the case! I've been so dizzy today along with all my weird head and neck pain. I've been having chills and a sore throat too, so I don't know if that is a cold coming on our Babesia again! I've also been getting these weird feelings in the front of my neck like it's flushed. I too take Ativan, although I wasn't before this whole flare up. I am so ready for an 'ok stretch', it doesn't have to be good, just ok!! I'll check into the Astaxanthin, seems like I've heard of it before. Thanks again for the supportsmile
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