Scared antibiotic route not working--what to do

Poor sis, this just breaks my heart.

When I started buhner's I decided that he knew his stuff and I stuck to his protocol as much as my brain fog could. I made mistakes along the way, but just kept on plodding.

Andrographis is the LAST herb buhner says to add. Just wanted to note that. And by the time I added it, I was doing so well that it did not matter. My immune system was working really good by that point.

Buhner also likes treating your worse symptom first. In this case sister really needs that tinnitus relieved. Buhner says - ginkgo, B-12, zinc and magnesium. I know you said you are already doing these so something is missing in her special formula. I call it special formula because we all have to tailor make our protocol. I had heart involvement and had to add in Hawthorn and Motherwort to begin and then I had lymph involvement too so I had to add Red Root. Then I could start the buhner protocol.

Remember this is the protocol and the ORDER in which buhner likes to address lyme.

1. Protecting endothelial structures (pg 214) - Polygonum cuspidatum (Hu Zhang or Japanese Knotweed)

2. Cytokine remodulation (pg 214) - Salvia miltiorrhiza (Red Sage) and Scutellaria baicalensis (Skullcap or Huang Qin)

3. Collagen protection (pg 214) - Great lakes gelatin, Vit C, Selenium, etc

4. Immune remodulation (pg 215) - Unicaria tomentosa (Cat's Claw), Cordyceps mycelium (a mushroom), withania somnifera (ashwagandha), Eleutherococcus senticosus, Glycyrrhiza (licorice)

5. Antispirochetal (pg 215) - Andrographis

He says that synergy is important. Not just one herb, but all of them working together. It is a process getting this lyme under control.

Also avoid aspirin or aspirin like herbs. Aspirin has been noted to CAUSE tinnitus.

She is so lucky to have you and it has to be hard when she can't express exactly how she feels.

Yes, it's possible that the pharma abx are too strong for her - that's why I turned to herbal protocols. The pharma abx caused too much die off and possibly other issues for me.

Here is how Buhner responded to someone else that had an allergic reaction (hives) to andrographis:
"about one percent of people who take andrographis have this kind of reaction. If you discontinue the herb the reaction will clear in a few days to a week. I would suggest using knotweed and eleutherococcus until you are used to them and then VERY SLOWLY reintroducing the andrographis at much lower doses and paying close attention to your responses. The knotweed can help lessen the potential allergic reaction. You just may be very sensitive to the herb and so tiny doses may work well for you."

buhnerhealinglyme.com/herbs/andrographis-allergic-reaction/

With her spending so much time in the car, I bet it's hard to get much detoxing done? This may be more of an issue than some realize. Can she take a binder, like activated charcoal? Just remember that it needs to be kept 2 hours away from everything else you wish her body to absorb - food, tinctures, pills, abx and more.

And I agree with PeteZa about the tinnitus - it's possible it's due to die off and swelling of the lymph nodes, or due to myelin sheath deterioration. You can try the red root, or if you believe it's due to myelin sheath deterioration, you can try Lion's mane - a mushroom extract:

www.ncbi.nlm.nih.gov/pubmed/12675022

www.livestrong.com/article/509385-lions-mane-mushroom-for-nerve-damage/

And we have to remember that stress lowers the immune function - and it sounds like she was under considerable stress with that blood draw. I'm so very sorry. I know how she feels. I have to get down right insistent at times about how my blood draws are done - and I watch to be sure I know what they are doing so I can stop them before they hurt me beyond reason. My veins not only roll, but fold over on themselves, so they get ONE try to get blood. Then I insist they go find the expert - the one they all turn to when they can't get the IV started. I refuse to allow anyone else to do it or else I end up with quite literally 1/3rd of my entire arm bruised and very, very sore. I'm the one that has to live with my arm like that, and I'm not going to allow their "issues" put me in extra pain.

PeteZa -
Connecting tinnitus to the lymphs in the head---excellent idea. I haven't noticed much difference since I started red root but I think it makes a lot of sense. I might try to increase my dose or add something else for lymphs.

Laura -
Also about blood draws - my veins are also bad. If you can, insist that all her labs are done at LabCrop or Qwest---done by a professional phlebotomist. I just wouldn't bother with anyone else. The LLMD can give you an order to take to the lab for the specific tests to run. Shouldn't cost any more, either. And before you take your sister in, I'd call ahead or stop by the location and speak to someone, let them know your sister's situation and her issue with draws and they'll be more prepared--give her more time for her appt., go slower, etc... She should not have to ALSO endure medical professionals who don't do well with blood draws (and unfortunately, most don't).

-p

Ha - I missed Traveler's note about "one chance". Traveler is more forgiving than I am I guess. ;) After one MD's office stuck me 7 times and ended up taking blood from the top of my foot, I said "no mas."

-p

Azith made my regular tinnitus (pulsed humming/roaring noise) go away but then started to get a solid loud noise - like deafening silence. It was weird and made me nervous so I stopped azith and my old tinnitus came back. I was taking azith for lyme/myco too.

If her tinnitus seems worse I would talk to doc about switching.

Does she takes baths? I feel like warm epsom baths calm my ears.

Thanks so much for all of the responses. Right now, I'm so exhausted and overwhelmed that I don't even know what to say.

We went to the LLMD yesterday and we are going to take a two week break from the antibiotics. I'm really feeling like this is the wrong route to go. But my parents are really scared and seem to be leaning in the direction of continuing with the LLMD. After the 2 week break, the LLMD said we could try a different antibiotic, but at a lower dose. Plus, we have another order for blood work. Honestly, though, it really scares me--I just look at my sister and we are so much worse for going in this direction.

Part of it definitely stems from the blood work. It was just so incredibly traumatic for her--three hours of terror. And after that, the tinnitus went through the roof. I found a paper by Dr. Martin Pall, a biochemistry professor, on tinnitus and the NO-ONOO cycle--I honestly think this is a piece of what happens for my sister (we saw it when she went from IBS/SIBO to CFS and Fibromyalgia). It's too complicated to go into the biochemistry here, and kind of over my head too, but I think having Down Syndrome plays a role--she's more vulnerable to oxidative stress and to problems with nitric oxide and this NO-ONOO cycle. The general idea fits with what we see w/my sister--trauma, intense physical or psychological distress does something with this NO-ONOO cycle and makes her sicker. His info on the NO-ONOO cycle was a key piece in helping us pull her out of the CFS/Fibro (basically you need lots of nitric oxide scavengers and antioxidants). Anyway, he seems to say this cycle and be involved with tinnitus as well. Now, for my sister, the onset of the tinnitus clearly seems due to the Lyme, but the sudden uptick that has caused us to basically be in the car all the time was clearly due to the trauma of the blood work. I've been trying to add in all the anti-oxidants and nitric oxide scavengers as possible, but we haven't really gotten anywhere most likely b/c every day there has been more trauma due to the cramping from the cefdinir (I know it may seem overly dramatic to call stomach cramps "traumatic" but for my sister, they really are--the pain looks excruciating, plus it brings back memories of the IBS/SIBO). I'm hoping that now that we are off the antibiotics, hopefully the cramping will subside, and then we'll have less trauma overall and then perhaps this antioxidant/scavenger approach to unwinding the NO-ONOO cycle chemistry will start to work and at least bring the tinnitus back down to the level it was prior to the LLMD blood work.

Going back to how taking this approach seems to be making her much worse, it also seems like her body just can't tolerate the antibiotics--it just seems too hard on her system. I'm really worried that we've already done damage to her. She's actually been off the Azithrymycin for two days and the Cefdinir for three days (I have no idea how long it takes to get that stuff out of your system). She's still really sleepy (this morning she was sleeping in the back seat, but prior to the antibiotics, she used to sit next to me while we drove around), and she's also more achy, and she had more abdominal cramping again last night.

Given the above posts, I'm still leaning in the direction of herbs. I started with Buhner's book 1, where he referred to Andrographis as a primary herb for fighting Lyme, so it kind of left me with the impression that we needed it. I saw in his new book 2 he listed it in the sample protocol for neuroborreliosis, but only six total. Maybe once we get things settled from the antibiotics, we can think about adding one Andro per week and see how things go. I've managed to maintain the JK, CC, Chinese CC, Red Root, Pinella, and Burbur, so at least some of the herbal protocol is still in place. I'm also thinking that instead of Andro we could just try to slowly add Banderol or Cumanda.

If in the next few weeks we can get the tinnitus down enough that we can get back to our pre-LLMD blood work level, then we'll have more time for detoxing and the stress level will go down.

Thanks for all the feedback. I can't believe what a nightmare this is.

Post Edited (LauraJK) : 5/18/2016 10:11:01 AM (GMT-6)

Laura, I know you want the lyme gone but Andrographis is super strong and it is Buhner's last step in the protocol. I really do not suggest that you start with that.

In my above post is the list of 1 through 5 and I suggest you going in that order. It is a slow approach but it worked for me and so many others.

Starting from the bottom up her body won't be ready for the big guns of Andrographis. She may herx real bad.

I agree her tummy issues could very well be from the antibiotics also. I would get her tummy calmed down with a BRAT diet. Bananas, Rice, Applesauce and Toast.

It sounds like you have most things covered pretty well, and what you don't, you are investigating. Good work! Do let us know how things are going and if we can be of any help!

Pirouette-

Thanks so much for your thoughtful response.

Yes, I totally agree with you on detoxing being the most important thing to do right now. We've added charcoal in the morning. So far just two--not sure if that's enough. But we really only have room to do it once a day. We can't do anything before bed b/c we need lots of stuff to get her asleep. I've also added a bit of Sarsaparilla back in (but not too much b/c we have to be careful about too many pills b/c that seemed to irritate her gut). We've continued on with Pinella and Burbur--both are at 45 drops per day. We used to be at 60 drops per day and will try to get back to that, but my sister is highly non-complaint now (she insists she's not thirsty and doesn't have an appetite--ever since the 2nd antibiotic--I'm really scared that she's just giving up and wants to die). We also have Red Root, Milk Thistle, NAC w/Molybdenum and Selenium, Alpha Lipoic, and full methylation protocol. I'm trying to get TMG and phosphatidylcholine back in.

On Alka Seltzer gold, we had to get rid of that--I never saw any benefit and my sister has problems with low stomach acid (we were in the ER two times, one for chest pain, one for throat pain, both times were due to the acid reflux/heart burn). Once we stopped the Alka Seltzer Gold and added in digestive enzymes with betaine/HCL the chest/throat pain problem went away.

She's also very regular--so no worries there. I'll have to look into the dry brushing--that seems like a possibility, but the detox foot baths I think will have to wait unless we can find a way to do it in the car. I've also tried those detox foot pads, but she just tears them off.

Anyway, it's just getting really hard to do things with her now. She's so non-compliant when it comes to eating and drinking. I think it was the Cefdinir that caused the lack of appetite, so maybe it's the lingering effects of that. She still complains of being tired during the day (she wants to sleep all day). And being sleeping started with the Azith, so maybe its the lingering effects of that drug.

To be quite honest, my parents and I are so scared that we've done real damage to her by going this route (my mother and I have been crying all morning). Also my sister has a couple of strange welts on her thigh--my mom thinks part of an allergic reaction to one of the drugs. The LLMD prescribed a drug for getting her appetite back, but we're absolutely terrified to add another drug, given how she's feeling right now.

I guess we just have to detox, detox, detox and hope we can get her back. This is so scary. And I guess we just have to hope that all of these supplements we are flooding her with will somehow undo the uptick in the tinnitus and get it back to a more tolerable level.

Hi Laura,

I'm so sorry to read about all the problems with your sister. I agree that antibiotics are causing her more harm then good and that detoxing is really important.

I healed from chronic lyme using botanicals. I first started with a botanical invented and tested by Dr. Jernigan called Borrelogen which killed more lyme bacteria compared to abx without the side effects (research below):

jernigannutraceuticals.com/Borrelogen_long_new.html

Another problem with lyme bacteria is when they die off (either naturally or by using medicine) they leave a neuro-toxin called Ammonia. We all have ammonia in our bodies and brain but when ammonia levels are too high they effect our brains and bodies. More information in the link below:

jernigannutraceuticals.com/Ammonia.html

Just a thought as this is a different approach that worked for me.

Best wishes,
Denise

LauraJK said...
We've added charcoal in the morning. So far just two--not sure if that's enough.

Your protocol is pretty good right now - and packed.

LauraJK said...
Once we stopped the Alka Seltzer Gold and added in digestive enzymes with betaine/HCL the chest/throat pain problem went away.

Awesome. So glad you figured out the low acid situation. That's also why I stopped ASG. But others have had good success. It's really important you keep her acid levels functioning.

LauraJK said...
find a way to do it in the car. I've also tried those detox foot pads, but she just tears them off.

The foot pads are mostly bogus. I had a lot of hope for them to help me but I've ready mostly bad info on them.

Regarding the low appetite and thirst and fatigue --- all of that is pretty normal for someone whose immune system is struggling. She might just need more down time. Let her sleep as much as she wants (you probably already do). Her body needs to be able to shut down like that so that it can use that energy toward immune function.

Hopefully someone will have good suggestions for how to get more liquids in her - the last thing you want is for her to be dehydrated and water is an important way to detox. If her lack of thirst and hunger continue, you might want to check in with the MD.

LauraJK said...
Also my sister has a couple of strange welts on her thigh--my mom thinks part of an allergic reaction to one of the drugs.

Possibly - or maybe a bart mark? Sorry--I can't remember if she has bart.

LauraJK said...
The LLMD prescribed a drug for getting her appetite back, but we're absolutely terrified to add another drug, given how she's feeling right now.

Totally agree with you. Let her little system work through what it's already taxed with... it's just going to take time. And yes - detoxing is the key.

I know it's scary. Please don't fret about the decisions you've made in helping her. You have been amazing and she could not be in better hands. It's absolutely exhausting being a lyme & co sufferer but I cannot fathom what parents and caretakers of children go through, and your family has an added complexity because she can't communicate everything to you.

You're doing great. Keep posting updates and questions. We have your back.

-p

Pirouette and Deejavu-

Thanks so much for your responses. Right now we are completely stuck and struggling. My sister simply wants to die (she says it all the time) and she's no longer cooperating. We are only able to get a few juices in her and a water, and a few spoonfuls of gelatin. She refuses pills now. I honestly have no idea how we are going to get out of this. Going the LLMD/antibiotic/blood work route was truly the biggest mistake of our lives. It was simply too traumatizing for her. The couple instances of diarrhea from the antibiotic were traumatic for her (same for the cramping). She's now afraid to go to the bathroom and figures that if she doesn't eat, then she won't have to go. I'm giving her inositol for her anxiety, but so far it hasn't work. She's scared of everything.