SOT Treatment for Lyme

Girlie- I have seen many successes with DSF in the Fb group. There are some though that have had big problems with it so there's a risk of actually getting worse. Time will tell if it's only a temporary worsening. Don't get me wrong. More have gotten better but there's definitely risk especially with neuropathy.

Lymie24 said...


Is that for targeting Lyme only?

Would targeting other issues like Bartonella, Babesia, EBV cost 4000$ extra each?

That's a good question. Mine is for Lyme only. I am lucky to not have Bartonella and Babes as far as the testing shows, but I do have elevated EBV.

I believe the SOT cost is per bacteria/virus. But I don't know if it's $4000 every time. I suspect it is, sadly. But I will ask.

MarkD- Have you tested for babesia duncani? IGeneX is one of the few labs that test for this species. That's how I found my babesia. It's very rare to just have Lyme. Not impossible but almost.

MarkD- Yes I think that's a very good idea. I'm seeing in the Fb group with some, Lyme SOT is enough but with others it can cause co-infections to flare.

I had to retest for babesia duncani last week as my positive is from last summer and you need a positive within 6 months of your blood draw to go ahead with the SOT.

I've changed my plan so now I want to do Babesia SOT first as the life cycle is shorter than borrelia so the results are quicker and less likely of that flaring I'm seeing in some.

MarkD, I am very interested in the Lymes SOT process and, as a journalist, am in the process of gathering information for a future article about my husband's journey through Lymes.
[FYI: He is 69, and had the huge bullseye rash - smack dab in the middle of his chest, over his heart, no less- about two years ago. He did a month's round of Dox ABs, only after he developed a high fever, and I saw the rash, which was already the size of a pie pan, so I know it was well into his system.
He has been plagued with fatigue ever since, but this spring he was hit with debilitating pain, and muscle stiffness that is drastically reducing his quality of life.
He went to a GP a month ago, and he tested positive for Lymes again, even though he has no recollection of a bite or rash. Dr. said test results were inconclusive as to whether this is an old case flaring or a new bite??? Put him on a month of Dox again and then offered him prednisone for symptoms (steriods, which shut down your immune system). I threw them away! ]

Please do let me know if you would be willing to share your journey: Where you are at in your Lymes. How long have you had it? What issues are you struggling with? What treatments you've tried, and your SOT journey too, especially, because we are considering our next step.

As a journalist, I was fortunate to receive a copy of the book "Conquering Lyme's Disease" from Columbia Medical Center, which was co-authored by Dr. Brian Fallon. Dr. Fallon is in the process of starting a new drug trial on Lyme's using an old, FDA approved drug disulfiram, which is commonly known as "Antabuse" becuase new scientific research has demonstrated that disulfiram is a potent killer of the Lyme bacteria in the laboratory setting. (As of 7/4/20 this trial is still open, and looking for people between 18 and 65 years old who have PTLDS.)
Co-currently, I interviewed Michael Reese, who is the creator of Lyme Site dot net. Michael is an herbalist who has found the best results for his Lyme following the Buhner protocol for Lyme.
That said, he and I discussed an herbal cousin of disulfiram- Kudzu- and if it would have the same efficacy-results- as taking the disulfiram.
This is what we stated: "Kudzu is a fantastic neuro-protective, but it is not in the same category, nor does it act with the same mechanism as something like disulfiram. They act on different pathways, but both can be used in Lyme infection, though coincidentally, they are both helpful for alcoholism. Kudzu is for anti-inflammation and the protection of neurological structures. While it does have some antimicrobial activity, it is very low comparative to disulfiram. Disulfiram is a potent antimicrobial and antiparasitic, with almost complete efficacy in eradicating Lyme bacteria."
MarkD, please know that I am sending up prayers for healing energies to descend upon you!
Take care,
LauraK

MarkD- Had my SOT on the 20th. Decided to start with Lyme after all since that is what I originally ordered. I have to say I strongly believe it's already killing borrelia. The die-off I'm getting mirrors when I was on a strong dose of doxy (achy/burning legs, fluish/chills, waves of nausea, back muscle pain). Luckily I'm only getting waves of it because the nausea is pretty tough to endure. Just wanted to chime in and say I believe it's doing its job and am hopeful. Good luck with yours!

Just got my SOT IV today. So now let’s see what happens. I will post updates of progress but I don’t expect anything to happen too quickly.

The only side effects so far were and upset stomach and a bit of a zoomy feeling from the steroids they have to add before the SOT IV.

Fingers crossed.

ToddPaul said...
Good luck Mark! My herxing lasted about a week. My last day of herxing I felt like I had a low-grade fever and what helped was Alka Seltzer Gold. This is a powerful treatment. It kills so much Lyme that the co-infections come out to play. At least that's what is happening in my case. I hate to get negative in any way but hopefully you won't experience that. I just think you should know so you could look out for it. I could wait but my next step is to try and get recent positives to do the Babesia SOT and probably Bart as well since both seem to be rearing its ugly heads.

On a positive note I've had really good energy lately. I'm usually much better in the summer but I think it could be from the SOT. I'll know for sure around the latter half of September when the weather starts to get cooler because I always go downhill then.

Looking forward to your updates!

Thanks ToddPaul

I have had a headache that started yesterday and is still kicking. And when I woke up this morning I am a little achy so I think the next few days a herx might be in store for me. That only other time I have felt this coming on is when I did too much LL37 peptide and herxed.

It’s great to know you are having success. A buddy of mine had an SOT for Epstein Barr yesterday and I’m tracking his progress as well. I might add that to the list if this goes well.

Will update with any significant changes.

ToddPaul said...
The herxing was tolerable for me and for most as far as I can see in the Fb group so I don't expect yours to get bad but I would highly recommend the Alka Seltzer Gold.

It even helps my tachycardia right now so I can sleep which is Babs flaring. My doc recommended something called H2 absorb for herxing but I haven't tried that yet.

Hope your herxing is minimal and you start to feel positive shifts sooner than later.

Thanks - i'm going to get the alka seltzer today.

MR asks some really good questions.

I also don't understand what they need your blood for. Are they testing it for pathogens?

Wouldn't they already know how to adjust the SOT for Lyme?

RainyCloud- It's very confusing what RGCC does but the practitioner in Georgia that has administered the most SOTs says they look for the Tec1/16s genotype in your blood which is found by DNA amplification of borrelia. That's all I know.

The person who recommended SOT to me in the first place did 2 for Lyme. With prime spot tests in between.

I also have a friend who just did SOT for Epstein Barr and I’m tracking his progress. I didn’t test positive for Bart or babesia so I likely won’t do one for those.

But again, it’s all predicated on my experience with this first one and I’m only on my second week.

Brandiwine said...
Just to be the discerning critic. Has anyone received and benefit from this treatment afterwards? I have posed this question to folks taking disulfiram also and I have not really heard of any real lasting improvements.
I'm not trying to be discouraging I just would like to hear about appreciable benefit after the Herx because as far as my own personal experiences there's dozens of things that we can take for massive die-off but I don't necessarily feel better after the ordeal.
But thank you for sharing your experiences with this treatment

You are right. It’s the exact question we have to ask with any treatment. Die off doesn’t mean overall lasting improvement.

In my case, I was convinced to try SOT based on the experience of someone I know who had the most severe case of Lyme I have personally seen. She has had lasting improvement and regained a quality of life that she hasn’t had in years.

But obviously that doesn’t mean anything until I see for myself. I am going to share my experience positive, negative or indifferent.