Awful wake up

Bullekideambule - I’m sorry you’re suffering so much!

I can relate somewhat because when I wake in the morning, I get a surge of shivering through my body and then sudden pang of anxiety and sweating. It’s gotten better but still there.

I also have nerve pain in my left shoulder blade, left arm and hand.

Can you take a break from the abx? Does that help?

Have you tried anything for the pain?
Gabapentin? Or Lyrica?

I tried everything possible on earth, lyrica, klonopin, ketamin kratom oxycodone...
I just restarted my atb on monday after a break of dsf as I just got worse.

I dpn t understand why all treatments are failures with me. I am planning to end my life when I will be out of this hospital.

It sounds to me like it is a sort of epilepsy yes. But no help in my country.

I see, what country are you from?
You might be able to buy these drugs from AllDayChemist, they deliver worldwide, you don't need a prescription.

I am in France. Yes I am overloaded of borrelia, bart and probably bab and can t detox ( bad HLA and cbs mutation).
I don t take lyrica now, it didn t touch it before.
I have 60mg of tranxillium = 2mg of klonopin, plus the 0.9 mg of klonopin.

I don t speak a very good English. It would br wonderful if you could have some informations about dr J.

Thank you very much for your help pandasmile.
I am alone in my hospital room screaming with anyone dokng anything.

Bullekideambule,

Please do NOT end your life. Nothing is impossible with God, not even what you’re experiencing. You can talk to Jesus anywhere, even in a psych ward.🙏

Sounds like you have a lot of toxicity issues. I do too. One thing I found helpful for cytokines is Chinese skullcap (Scutellaria baicalensis) also called Baikal skullcap.

Also, are you taking any kind of binders to help remove toxins from your body? Examples - activated charcoal, bentonite clay, zeolite such as Zeobind powder, chlorella, modified citrus pectin, etc. Cholestyramine is the most potent binder. It’s a prescription. You can get custom compounded Cholestyramine from some US pharmacies without the fillers and additives. Because it is so potent, it can be hard for some to tolerate except in tiny doses. There are also combination binders like GI Detox by Bio-Botanical Research and UltraBinder by Quicksilver.

Do you take liposomal glutathione? Glutathione is necessary for the body to detox. Our bodies don’t produce enough. Exposure to molds like Aspergillis can also deplete our glutathione and lead to toxic overload. Glutathione will help your body “dump” toxins. The binders will help to “catch” the dumped toxins and remove them out of your bowels.

Moving your bowels every day is necessary to get toxins out. I have heard that coffee enemas are very helpful, but I haven’t used them. I did drink a laxative tea with senna leaf each night last week while taking extra herbs to treat parasites. The laxative tea made a big improvement in how I felt. My body felt much less toxic the next day after drinking the laxative tea.

If you’re able to read and understand English well enough, you might want to get Dr. Neil Nathan’s book, “Toxic.” I believe it’s available in digital format as well. That book may give you insights into why you are failing with treatments and everything is making symptoms unbearably worse.

My heart goes out to you. Many of us have wanted to end our lives due to these illnesses and due to repeated failures of treatments. You are not alone and people here understand the depths of your despair. It can be comforting to think there's a quick way out of this situation, but I am glad that you are reaching out for help. Please be gentle with yourself, and know that people can and do get better. I know how hard it can be to hold on, especially when it feels like there is no help to be found.

Ideas for you:
- CBD, preferably in a full-spectrum hemp oil. You might need high doses, and it can be pricey, but I've seen it do amazing things for sleep, nerve pain, and anxiety. Really life-changing.
- Work on your HPA axis dysfunction (an imbalance in the hypothalamic, pituitary, and adrenal hormones). Not enough doctors know about HPA axis dysfunction considering how common it is for those of us with these conditions. The fear you are experiencing (understandably!) will drain your adrenal system, and affect all of your other hormone systems. Any imbalance in these can make a person feel absolutely miserable and/or off-the-charts anxious. Adaptogenic herbs, mindfulness, yoga, and a glandular support supplement might make a big difference. Adjusting my HPA axis helped me get rid of the horrific waking-up tremors you described.
- A mind-body program like Dynamic Neural Retraining System (DNRS). It's not just a positive thinking or meditation program (although meditation can be very powerful). It actually rewires the pathways in your brain that cause nerve pain, hormone issues, and lots of other symptoms we struggle with. It takes work and takes time, but it works. These infections cause damage, but the damage usually can be healed!

Sending you peace and fortitude.

If I may join this conversation...

Bullekideambule,

Please stay with us, on this forum and this life, however difficult, and use our wisdom to heal and get through this.

I do know the sort of agony you are going through, and it's extra-terrifying when those around you don't (or refuse to) understand. You are strong, and you can get through this.

You probably just overdid the Disulfiram, it is powerful, and this is a cautionary tale to all the current attention on DSF (Disulfiram). It's trending like wildfire, and it is sending folks to this agonizing place..remember it is temporary. You can wash it out.

Of this particular and powerful monotherapy of Disulfiram, some worry that it kills and bursts cysts too fast in late-stage involved Neuroborreliosis... and releases too much into the system to handle, the toxins, debris, herx symptoms, result in these neural sensitivities and HPA disruptions---->Neuropsychiatric problems may become severe in those with Neuroborreliosis (based on my readings similar to how malarial drugs sometimes cause psychoses).

As I have Neuroborreliosis involved late stage, I am aware of DSF and its powerful effect. I experienced similar on both Metronidazole/Minocycline and Teasel Root, Japanese Knotweed Resveratrol, Cats Claw, Grapefruit Seed Extract (a.k.a Buhners Protocol). But having that NT Factor on hand was essential to not getting too dark in my mood from the pain and misery during that time. NTFactor repairs nerve myelin sheaths, or rather provides the body with the building materials to repair those tiny nerves.

It sounds like you need to heal those nerves, (likely giving you those head pains and more) they are raw from bactericidal aftermath... NTFactor is a supplement that I can no longer afford, but after my first real herx, the exaggerated pains from lightest touch and discomfort from even the slightest uncomfortable clothes ( could only wear certain soft blends, athletic clothes.. that was Allodynia too..yes)...nerves do heal, but especially painful.

I second the suggestion for Baicalin (Sculleteria Baicanensis sp...?) or Chinese Skull Cap. It prevented a seizure and quieted a tremor for me. I was very close to a seizure the other day, and also have tremors, shaking from a stressful event and taking Baicalin Powder calmed it right down enough to (sort of) sleep.

Also some L-Theanine if you can find it.

Also magnesium (citrate or any variation really thereof).

One last thing that may immediately help: you might ask the hospital (they all have it, it is very cheap) for some Tylenol (Acetaminophen, called Paracétamol in other countries) for the pain. Also there was a study that found that Tylenol (Paracetamol, Acetaminophen) also reduces anxiety by reducing pain...

allez mieux, sentez-vous mieux bientôt,
-Borrelio

I have dsf pills of 500mg so I began with 125mg every 3 days and was ar 250mg per day for 2 weeks before stopping it.
I asked to take a break of the 2 antibiotics yesterday because I am stucked in this hospital wihout any detox method I can do and I think mino can up the nerve stuff.
The psychiatrist saw me this morning and added a neuroleptic 3x a day and uppped my remeron morning noon and morning, plus the benzos. I will die with all of this !

Post Edited (Bullekideambule) : 10/21/2019 5:47:47 AM (GMT-6)

I felt like total crap on DSF last week.
It was the magnesium.... I bought the chewy kind. Took 2-3. Then I started feeling better and ate the whole bottle. Now I feel slightly better.

Going to double up on my Iodine, Zinc, Magnesium, Potassium, and regular sodium salt and go back to fasting.

if I need to I have 5HTP, GABA, L-Thainine, .. fasting, more detox. I'm only at 62.5mg 1/4 of a 250mg pill (but my second attempt) of DSF.

every kind of tea,

salt, salt and more salt with more magnesium. Got a new bottle of magnesium because I ate all the chewies, Magnesium Citric ..

Also I wanted to note

I have the biggest headache when I wake up in the morning. Like the worse hangover you could imagine -- 18 shots of tequila in Tijuana ain't nothing compared to these "hangovers". But it's because of lyme, because when they go away I feel healthier. I guess it'll be 4 months of hangovers to get cured. The DSF hitting Lyme definitely causes hangovers.

I bet Bullekideambule is STILL feeling the die off (28 days later because of life cycle) of DSF and that is the issue.

Hang in there Bullekideambule! Its just dying off!