Update, Feeling Pretty Crushed and Hopeless. Constant Herxing Issues.

Hi, I hope you are all progressing in your treatments!

I don't mean to be a downer with this post, but I'm just tired and struggling and feeling adrift and can use any support possible.

Basically, I have been dx'd with protomyxzoa, 2 shigella variants, high ebv titers, and possible lyme.

Unfortunately I had to stop meds 4 weeks ago as my constant herxing was just becoming too much. It has been a rough month of trying to recover. The first 2 weeks off meds it felt like my head was going to explode, and then I've had terrible burning neuropathy (an old symptom), and terrible pain in the back of my head and lymph nodes behind ears. The insomnia has been brutal, and is due to the pain, which I always deal with at some level. And drenching feverish sweats. In general, my symptoms always wax wane throughout the day but are always dogging me at some level. Things are better, but I'm still recovering. And the neuro-cog issues were through the roof, I couldn't focus or even watch or follow tv and just felt like I was spinning and disoriented and unable to maintain any mental stability. And I think I was shocked by the burning neuropathy, haven't had that in years. I take it as a sign that there is pathogen in the nerves, which the biaxin hits, and I have no idea if I can clear it because the herx response is so utterly brutal.

Per llnd instructions, I had introduced several new things, including GSE, biaxin, artemisinin, and alinia (and was already on ivermectin once a week). I thought my body was stronger and I could power thru these meds. But they hit me hard, harder than I even realized while I was taking them but I thought, since I'd been feeling stronger before that I could power thru and reach the promised land. I think the biaxin was especially effective, but it has also probably been the primary culprit in the intolerable herxing I've experienced (head pain, neuropathy).

Whenever I take a medicine, I herx almost immediately and it takes quite a while for my system to clear. It didn't seem so bad at the time when I started these meds, but it must have built up and ended up overwhelming my system. I got to a point where my head felt like it was going to explode and I was going to go crazy with anxiety and pain.

I do get improvements with meds over time but my body always feels like it is in "herx" mode. And the "herx" doesn't stop after a few days, it just goes on and on and on endlessly. So maybe I'm not herxing in the classical sense, I honestly have no idea.

But my llnd doesn't seem to comprehend how bad it is. He's suggested a few things but sadly they don't help at all. And I've been detoxing like crazy. One of the only things that has helped me with things is taking the allergy med, singulair, which is unideal but it takes the edge off. And taking time off meds to recover. I've never gone on such a long break but I can't even contemplate taking anything until I'm not feeling so crushed and unstable.

I'm starting to think the only way I can treat is to do low dose pulsing a few times a week. I'm just really burnt out and feeling really sad and rather hopeless. Even with low dose pulsing it isn't easy. I guess this is the first time I've ever felt like I won't be able to beat this thing. I don't need to be 100%, I'd just like to have some semblance of a normal life. I just feel trapped, darned if I treat, darned if I don't. These symptoms just won't let me go, whether I treat or don't.

I don't know how I'm going to do this. I can't handle the meds, and for whatever reason there is some crazy herx or immune system response with me and meds. I don't know if I should try some immune system testing to see if there is something out of whack? I'm starting to think it is more of an immune system issue than a detox issue (or both). Like an inflammatory cytokine cascade, and even without treatments the pathogen overstimulates my immune system? it is one of my theories. Especially since allergy meds seem to take the edge off.

Does anyone else have this problem with constant herxing? I just don't know if I will be able to get better if I do low dose pulsing, I think I have a very high pathogen burden, or a weird pathogen mix, or a highly problematic immune system compromised by pathogens. Even with herbals I get hit hard, but I might have to look into some sort of pulse regimen with them.

The thing that sucks is that I can tell that I improve my baseline pain when I stick on meds for a while, but I'm basically in a constant herx when I treat like that and it is very tiring. I'm coming from a very deep hole (bedridden for years with terrible chronic pain in lymph nodes, fatigue, neuro-cog issues) and this no doubt plays a role in how hard it is for me to recover. I have improved this last year, but it has been very very hard fought and I'm still very compromised (unable to work, focus at levels I need).

I'm hoping that if I can recover a bit of stability I can get back to a rhythm of treatment that can work for me.

Thanks for any help you might have to offer!

Post Edited (sebreg) : 9/30/2015 7:30:38 AM (GMT-6)

Hi Sarah. Yes, pretty much any antimicrobial hits me, but I think the good thing with the herbs is I could titrate them to low doses and find tolerable doses. I'm probably going to look into an herbal protocol, even a very light one or pulsed because at this point I'm just so wobbly and smashed.

I think the hardest thing was thinking I was so much closer to regaining my health, and to see how hard all those meds hit me, bringing out all these terrible old insufferable symptoms, and to still be reeling after a month is just so completely demoralizing.

Sorry to hear you've hit a rough patch Sebreg. :( From my own experience, abx were much rougher on my body and I felt lousy 90% of the time I was on them. Abx gave me extreme chest pain, and a plethora of other side effects that my body couldn't tolerate. I do think initially it did help kill off a big load of the bacteria but I seem to be responding to herbals much better. In fact, I had two days last week that were symptom free!

I hope you find something that works for you soon and you get back on the right path treatment wise. Good luck...I am rooting for you!!

Thank you guys, I appreciate the kind words and the suggestions. I do think I will go ahead with the pulsing Girlie, that is my most solid option I think and it will be my best option to maintain a grasp on my sanity (what's left of it!).

And congrats Sniogra, that is awesome to hear you had some symptom free days! and thank you so much for your support and for rooting for me :) It really does mean a lot to have all your support. But yeah, it just sucks, I know the abx work very effectively for me, and it's not so much side effects as it is the consistent explosion of my underlying symptoms that takes place when I take them. I just did too much too fast, and sadly, the biaxin, while very effective, takes me out to the woodshed with the head pain and the burning neuropathy.

And thanks cd, I think I have to look more into this angle. Unfortunately I restarted lexapro, I'd worked so hard to get off of it. But I was just so blown up with everything and need anything that can help me psychologically and also with anxiety and pain. But I hope it doesn't interact with the Buhner herbs that can help with cytokine cascade, like japanese knotweed. If it does I'm sure there are other things to try. I may have to run this by my llnd. I'm waiting to see him until I'm more stable, otherwise there just isn't much he can do for me right now until I get my feet back under me.

My body needs to stabilize to the point where I can actually get some sleep. Right now the neuropathy, while much lighter, is still messing with me and keeping me from being able to sink into any consistent rest. Sadly my symptoms have always impeded me from getting proper sleep throughout, but usually it isn't this bad.

I do wonder if because singulair works so well for me it might be worth looking into other meds of that nature? I imagine the danger is that I could end up suppressing the immune system too much by over pursuing the allergy med angle.

Oh also what is protomyxzoa?

Have you gotten tested for reactivation of the HHV6- because 100% of the American pop. Has antibodies from having the childhood illness rosiola. HHV6 can reactivate due to other infections and an active hhv 6 infection can hinder treatments(according to what I've read about it)

Hi Sebreg, I started a heavy dose of abx and had to stop because I had a severe allergic reaction which was not from the meds but I didn't know that at the time. I started them a few weeks later slowly and then was so sick I stopped taking them. Started a month later for 2 weeks and then stopped again. For the first time in 21 months, I feel so much better. Pulsing and the heavy dose of abx seem to be working. Here is an interesting article:http://www.sciencedaily.com/releases/2015/06/150601112236.htm

I'm sorry you feel so awful. I am so lucky to have good days. I was on biaxin/plaquenil/penicillin. I tried supplements and they made me so sick I thought I was going to die. I know everyone's treatment is different but this seems to be working for me!! Good luck.

sebreg

Neuropathy has plagued me since being on abx and it lessened ever-so-slightly after almost 6 months on Cowden.

I'm thrilled to report that I've made more progress with Buhner's Lyme and Babesia protocols and hope they are "the answer" for me. I'm not even up to full doses of the Babesia protocol and it seems promising.

I've been doing everything I can to rid myself of neuropathy because that seems to be the only thing standing between me and full healing.

Buhner has a few herbal suggestions that help with neuropathy:

buhnerhealinglyme.com/lyme/neuropathy/

More are listed in his books. If you'd like me to share, just let me know.

I also found some useful information here:

www.dynamicchiropractic.com/mpacms/dc/article.php?id=56879

/www.caring.com/articles/peripheral-neuropathy-treating-it-the-natural-way

www.naturalnews.com/029779_peripheral_neuropathy_remedies.html

My supplements and food choices are based upon what I've read in those links as well as in Dr. B's Diagnostic Hints and Treatment guidelines.

In addition, based upon what was shared on this forum, I've been taking Planetary Herbals Myelin Sheath Support. I also just started NT Factor which also helps heal nerves.

Things have improved and I'm hoping things continue to improve until full healing happens.

Nerves can take as long as 7 years to regenerate so, anything that can move the process along is what I'm doing.

Perhaps something I've mentioned might work for you.

Hope you get some relief very soon!!!

Thank you guys! really appreciate your help. Helps to talk about this as I am really going thru the ringer. One of the things I started taking that seems to help a little is gabapentin.

Bit of a repeat of my previous posts, but I just feel so scared and need to keep venting and sharing.

I am still fighting this pain, sometimes it is better and I think hey I might be getting out of this hole. But then it grips me super hard and is so unreal and puts me on edge and is just unremitting. Certain symptoms have eased up, like concentration issues, mental clarity, and degree of pain and pressure headaches, feverish sweating during day, fatigue etc.

The pain was so bad several weeks back it was pushing me to suicidal thoughts! I'm not at that point anymore, thank god. I absolutely don't want to die but I'm just getting punished so hard. I'm trying to remember that things have gotten better even if I'm still suffering a lot right now.

But the pain (mostly back of head pain and neuropathy) is still so bad and eating me up, overwhelming, and taking all my energy to get thru. It is really scary. I feel really stuck and scared. The pain is keeping me from sleeping. I do believe it will let up eventually, but I'm scared that it is so obstinate and deep that this could last several months if not more. And that prospect is very very scary.

The other thing that bothers me is I can't take any treatments while my body is feeling so unstable and terrible. I am very sensitive to meds and need to feel decent to be able to manage any abx or antimicrobials. But it scares me a lot to not be taking anything to keep illness in check, but at this point I can't mentally/physically handle anything and the risk of making things worse with meds is greater than the risk of taking this break to try and recover some balance. Such is my thinking.

And I can't distract myself and think of anything else while the pain is at these levels, all my energy is devoted to trying to survive and scratch and claw my way thru the day. I wish I could escape this pain, and take a vacation from my body. Or just have things ease up, I am used to dealing with chronic pain, but this type of pain is on another level and just grips my throat and doesn't let go.

I am just... scared. 5 weeks off abx and I'm still trying to recover :( unbelievably shocked, scared, and sad that I could go into such a tailspin from meds.

Your thoughts and prayers are much appreciated. Getting a massage today. Will be looking into acupuncture as well. I'm lucky to have a supportive family and a really good friend who is trying to help take care of me while I go thru this.

I'm trying to stay strong thru this. Praying, thinking positive. Fighting. Wish me luck buddies.

I feel like I'm fighting for my life right now. I know things will get better. Don't know when though.

I'm so sorry you're going through this Sebreg. I will most certainly pray for you!!!

Gabapentin has been the drug that has helped most with my pain. It does not get rid of my pain, but it helps. I also took Voltaren for a while, which helped. I stopped it for a few reasons. My pain takes a multi-med approach. I'm sorry you're dealing with such intense pain!

When you take Ivermectin, does it help with your pain? It is the strangest thing. I took a few rounds of it. It made me feel fairly normal for a few days. I still don't know if it hit Babesia or something else. Not very many people here talk about it.

Sending you big ❤️ ((((Hugs)))) ❤️

I agree with Mister Mike here. You are not whining. Don't feel like you're being needy. You're going through a very rough time and we're here for you!

Thanks for responding to my question. For some reason, the Ivermectin made me feel better. Every other med has caused a herx (of some level) for me.

Don't feel badly about needing pain meds either. I really hope you feel better soon!!!

Sebreg- you are not being dramatic when you say you are fighting for your life. I know a lot of us are in survival mode here and we have to lean on each other for support. The truth is no one really understands what we are going through on a daily basis.

I too get overwhelmed by my obsessive thoughts and fears about wondering when and if I will ever get better. The few moments I get a reprieve from my symptoms are what keep me going. I know healing is possible....it's just a really, really rough ride getting there.

I also gather inspiration from those that have healed and come back to help those of us who are suffering. How truly selfless and remarkable are these people! (Thank you moderators and others who have healed :)

Praying for you Sebreg and hoping that some better days come quickly!