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SOT Treatment for Lyme

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Posted 8/9/2020 3:06 PM (GMT 0)
I recently got my SOT for Lyme on July 15. I have seen very minimal improvements. I went to The Genesis Center in Georgia and I have been trying to contact them with a few questions but I don't get a response. My entire ordeal was slightly strange in regards to my lab work and even getting the SOT. Minimal questions were answered and I am actually suspicious that I received an SOT for a different illness. My only opinion to it thus far is maybe I'm anxious to feel well and need to wait longer. Definitely do your research on what clinic to go to and Definitely connect with people on the SOT Facebook group. I wish I did before I went to The Genesis Center. If anyone knows the RGCC Therapy numbers, please share. My paper said I got RGCC40 and someone told me it is for Babesia but I have never tested positive for it or even spoke to the doctor about it.
Posted 8/9/2020 3:14 PM (GMT 0)

sketchyfrog said...
I recently got my SOT for Lyme on July 15. I have seen very minimal improvements. I went to The Genesis Center in Georgia and I have been trying to contact them with a few questions but I don't get a response. My entire ordeal was slightly strange in regards to my lab work and even getting the SOT. Minimal questions were answered and I am actually suspicious that I received an SOT for a different illness. My only opinion to it thus far is maybe I'm anxious to feel well and need to wait longer. Definitely do your research on what clinic to go to and Definitely connect with people on the SOT Facebook group. I wish I did before I went to The Genesis Center. If anyone knows the RGCC Therapy numbers, please share. My paper said I got RGCC40 and someone told me it is for Babesia but I have never tested positive for it or even spoke to the doctor about it.

That is terrible. At the least the genesis center should be answering your questions. I do think you won’t get much response from RGCC though. It may take years before we find out more about their process and exactly how effective it is. We need larger numbers of people to try it, but it’s expensive. I’m about 3 weeks in to my Lyme SOT and I can’t report anything one way or another but I will keep updating.
Posted 8/9/2020 3:19 PM (GMT 0)
We both got our SOTs close together. The way they are avoiding my request for lab paperwork is what is making me suspicious. On top of barely any improvement at all. I had Thyroid Cancer 2 years ago and suffer from Severe Hypothyroidism on top of lyme so even when I do have some improvements, I don't know if it is from the SOT or my Thyroid levels being more decent. I did have a non-stop terrible migraine for about 6 days post SOT. Other than that no bad effects other than a lower savings account 🤣 I just found this site this morning so I will definitely be following up to see updates. Did you receive any paperwork with your SOT?
Posted 8/9/2020 4:37 PM (GMT 0)

Sketchyfrog💚 said...
I recently got my SOT for Lyme on July 15. I have seen very minimal improvements. I went to The Genesis Center in Georgia and I have been trying to contact them with a few questions but I don't get a response. My entire ordeal was slightly strange in regards to my lab work and even getting the SOT. Minimal questions were answered and I am actually suspicious that I received an SOT for a different illness. My only opinion to it thus far is maybe I'm anxious to feel well and need to wait longer. Definitely do your research on what clinic to go to and Definitely connect with people on the SOT Facebook group. I wish I did before I went to The Genesis Center. If anyone knows the RGCC Therapy numbers, please share. My paper said I got RGCC40 and someone told me it is for Babesia but I have never tested positive for it or even spoke to the doctor about it.

Welcome to the forum sketchyfrog!
Posted 8/9/2020 4:57 PM (GMT 0)
Thank you!!! 💚💜💙
Posted 8/9/2020 5:03 PM (GMT 0)

Sketchyfrog💚 said...
We both got our SOTs close together. The way they are avoiding my request for lab paperwork is what is making me suspicious. On top of barely any improvement at all. I had Thyroid Cancer 2 years ago and suffer from Severe Hypothyroidism on top of lyme so even when I do have some improvements, I don't know if it is from the SOT or my Thyroid levels being more decent. I did have a non-stop terrible migraine for about 6 days post SOT. Other than that no bad effects other than a lower savings account 🤣 I just found this site this morning so I will definitely be following up to see updates. Did you receive any paperwork with your SOT?

Welcome! I’m relatively new as well. I got my SOT IV 2 weeks ago at a doctor in Los Angeles. I got zero paperwork as well but I didn’t think to ask at the time. I wish I would have. Maybe I’ll follow up with them. I still think it’s unlikely RGCC will communicate directly to individuals.

Because we are doing these treatments outside the FDA in Greece etc, we are assuming a lot of risk. Also the clinics in the US are subject to risk as well. That’s why I’ve started not naming them in case it’s an issue (I probably have in the past).

But with anything Lyme Im grateful for any doctors office that is willing to offer new treatments but I also know that the physical and financial risk is 95% me. The other 5% I assign to them in the hopes that they don’t offer anything that will kill me smile. But this is the sad state of Lyme right now.

If I find either through research or my own experience that RGCC SOT for Lyme is not effective I will be the first to share that. I’m lucky that I can take some financial risk right now that maybe others can’t.
Posted 8/14/2020 6:36 AM (GMT 0)
I have joined a lyme SOT group on Facebook, people have referred to a clinic in Poland with positive results but I don’t know much about this at all. I’d be interested to look into it.
Posted 8/14/2020 4:07 PM (GMT 0)

Szabo246 said...
I have joined a lyme SOT group on Facebook, people have referred to a clinic in Poland with positive results but I don’t know much about this at all. I’d be interested to look into it.

I don't use Facebook (never have never will - know too much about the inner workings) but I've heard there is a pretty good discussion on SOT there. If there's anything insightful it would be great if you cross post here. Thanks
Posted 8/14/2020 6:37 PM (GMT 0)
I don’t blame you Mark, I often come off it and feel a sense of relief! I will keep my eye on the discussion and be sure to share anything I feel is of use.
Posted 8/20/2020 12:57 PM (GMT 0)
1-month update:

Today marks one month since I received my SOT for Lyme. I'm still fairly early on in the process but unfortunately I have to say I'm worse than before.

It's not a knock on the treatment though. I do feel it's effective for the pathogen it was created for but unfortunately borrelia wasn't a big problem for me and Bart is. My neuropathy is worse. Legs burn and ache more and now I have it in my face which they call it facial flushing. This was one of my symptoms before but now it's all the time instead of just once in a blue moon. The worst are the nausea/chills flares but I've only had a few of those and last week I tried Advil and it really helped so at least I have something in my arsenal to help alleviate them when they occur.

The plan next is to hopefully be eligible for the Bart SOT. I should get my IGeneX test results in about a week or so to see. From what I'm seeing in the Fb group SOT for borrelia and babesia has been more effective than the Bart one but I have to try at this point. I'll keep updating and would love to hear from others how they are doing with their treatment.
Posted 8/20/2020 2:38 PM (GMT 0)

ToddPaul said...
1-month update:

Today marks one month since I received my SOT for Lyme. I'm still fairly early on in the process but unfortunately I have to say I'm worse than before.

It's not a knock on the treatment though. I do feel it's effective for the pathogen it was created for but unfortunately borrelia wasn't a big problem for me and Bart is. My neuropathy is worse. Legs burn and ache more and now I have it in my face which they call it facial flushing. This was one of my symptoms before but now it's all the time instead of just once in a blue moon. The worst are the nausea/chills flares but I've only had a few of those and last week I tried Advil and it really helped so at least I have something in my arsenal to help alleviate them when they occur.

The plan next is to hopefully be eligible for the Bart SOT. I should get my IGeneX test results in about a week or so to see. From what I'm seeing in the Fb group SOT for borrelia and babesia has been more effective than the Bart one but I have to try at this point. I'll keep updating and would love to hear from others how they are doing with their treatment.

Sorry to hear you are suffering. I hope that it ultimately leads to a path of recovery.

From my testing, I don't believe I have the bart problem. I seem to be more of a classic Lyme guy who is lucky to not have as many co-infections.

I got my Lyme SOT on 7/28 and i just started having some feelings of die off. I had 3 rough days this week with aches and joint pain flare ups. To me it's a good sign that it's working but time will tell. I've also had less overall fatigue. I'm hoping that is a result of the SOT, but probably still too soon to know. But at least I feel like I know it's working.

I guess the good news is that you are looking to do another SOT for bart so you feel like it's an effective treatment?
Posted 8/21/2020 3:22 AM (GMT 0)
MarkD- Glad to hear you're seeing some improvements. Consider yourself incredibly lucky if you don't have co-infections but I'll be honest with you that is really unheard of not to have them. Lyme almost never travels alone. Testing for co-infections is even less reliable than for Lyme.

I do believe that SOT is very effective but just for the pathogen it's made for. The borrelia SOT is very effective for Lyme and the babesia SOT seems to be also pretty effective but the Bart one I'm not seeing many that have had success so far which scares me because that's the one I really need to work. Not sure if that's because many have multiple species of it or just that it needs to perfected since it's so new. I'm still going to give it a shot though if I'm eligible and hope I buck the trend.
Posted 8/21/2020 3:26 AM (GMT 0)

ToddPaul said...
MarkD- Glad to hear you're seeing some improvements. Consider yourself incredibly lucky if you don't have co-infections but I'll be honest with you that is really unheard of not to have them. Lyme almost never travels alone. Testing for co-infections is even less reliable than for Lyme.

I do believe that SOT is very effective but just for the pathogen it's made for. The borrelia SOT is very effective for Lyme and the babesia SOT seems to be also pretty effective but the Bart one I'm not seeing many that have had success so far which scares me because that's the one I really need to work. Not sure if that's because many have multiple species of it or just that it needs to perfected since it's so new. I'm still going to give it a shot though if I'm eligible and hope I buck the trend.

I will retest for co-infections after the Lye SOT. I do have some, but from what I can tell I don't have Bart. Also, my symptoms in general seem to be not as severe as some and maybe that's why.

When you say "if i'm eligible" are you talking about insurance covering it?
Posted 8/21/2020 5:49 PM (GMT 0)
MarkD- I'm not as severe as most yet I have Lyme, Babs and Bart. It's quite obvious to me now that Bart has always been my dominant infection. I've heard it tends to dominate in Lyme patients and do believe that now.

By eligible I mean I need to test positive for it. I've only had an equivocal and that was too long ago. Besides testing positive I'm hoping I don't have multiple species of Bart because that would make it more difficult to eradicate considering SOT is species-specific. I did the Bart 3 panel through IGeneX. One of the tests is the Western blot for Bart which tests for 4 diff species though I believe only 2 of them there is an SOT for as of right now.
Posted 8/23/2020 3:18 AM (GMT 0)

ToddPaul said...
1-month update:

Today marks one month since I received my SOT for Lyme. I'm still fairly early on in the process but unfortunately I have to say I'm worse than before.

It's not a knock on the treatment though. I do feel it's effective for the pathogen it was created for but unfortunately borrelia wasn't a big problem for me and Bart is. My neuropathy is worse. Legs burn and ache more and now I have it in my face which they call it facial flushing. This was one of my symptoms before but now it's all the time instead of just once in a blue moon. The worst are the nausea/chills flares but I've only had a few of those

ToddPaul,

Can you describe your facial flushing? And how do you know it’s from bart?
Posted 8/23/2020 5:13 AM (GMT 0)
Walking- I have the unrelenting tingling/burning in my legs as one of my regular symptoms. This is always under Bart in the symptom charts. My face now since SOT feels similar where it's more of a burning but sometimes tingling. Never thought it was neuropathy until now. I'm def flaring Bart mostly since my Lyme SOT (legs ache and burn, some foot pain, vein appearances, chills and facial flushing). All Bart. Babs made a brief appearance with air hunger, some light night sweats and tachycardia for about 5 days but that was it.

Always thought chills were Babs but now I know it's Bart at least for me it is (they are coming along with the other Bart flares). Bart causes cat scratch fever and one of the symptoms is chills. Really figuring things out now. It's all about Bart for me.
Posted 9/5/2020 5:39 AM (GMT 0)
I’m about 5-6 weeks in and feeling some improvement. I’ve had overall increase in energy and just a general lack of joint pain. I know it’s early and also that my symptoms flare and resolve periodically, but I’m hopeful that this treatment is the cause of my current improvement.

Will update every couple weeks with my anecdotal results and then whatever data I get when I retest after 16-20 weeks.
Posted 9/5/2020 12:43 PM (GMT 0)
MarkD- That's really awesome news! I hope you keep improving. Keep up the updates.

I got my test results. Babesia duncani is still positive and as I suspected I have Bart as well. Too many strains or sub-species to do one SOT so my doc has prescribed meds to tackle it. Hopefully it will be easier to treat now that Lyme has been knocked down. One positive note is my flaring has calmed down. The first 5 weeks or so were pretty rough.
Posted 9/7/2020 3:39 AM (GMT 0)

ToddPaul said...
MarkD- That's really awesome news! I hope you keep improving. Keep up the updates.

I got my test results. Babesia duncani is still positive and as I suspected I have Bart as well. Too many strains or sub-species to do one SOT so my doc has prescribed meds to tackle it. Hopefully it will be easier to treat now that Lyme has been knocked down. One positive note is my flaring has calmed down. The first 5 weeks or so were pretty rough.

Sounds like you have a heck of a fight with Babesia and Bart on your hands. I hope the meds kick in and don't cause too many side effects. Thanks for updating your progress as well!
Posted 9/14/2020 12:17 PM (GMT 0)
I have had it done, but just once. I more than likely needed 2-3 of the SOT treatments one after the other. I PrimeSpot tested with very elevated EBV and moderately elevated Lyme bacteria. I can't remember why I decided against doing more at the time (cost maybe?) but I am revisiting doing it again after I start methylating again. I have had a hell of a time methylating due to extensive SNPs along the cycle.

Anyway, my doctor, Dr. Fetters, in the Indianapolis area offers SOT and has been for some years now. I believe I have answered a post on this before. The cost was $2900 last year, but has since been bumped up in price. $4000, as quoted elsewhere, seems right, but don't quote me on it. I don't think there was discussion on what the testing procedure is like, but I could be wrong. I generally just scan the conversations, because I have trouble reading. Yes, it is sent to Greece from his office, so it is the same thing offered as described elsewhere. Here is a link to his office that explains what is involved in the testing for SOT treatments:

https://www.hwofc.com/primespot
Posted 10/13/2020 1:14 AM (GMT 0)
My bi monthly update. I'm 10 weeks in. I have had varying levels of increased Lyme symptoms during my SOT but it's pretty much leveled off. I guess I'll be tested again in 8 weeks to see where I'm at. I'm not sure what I will do if the doctor suggests another SOT. I find it almost impossible to tell if this is working or not.
Posted 11/9/2020 2:13 AM (GMT 0)
After another month things seem to have changed for the better or worse depending on how you look at it. I’ve had two weeks of herx type symptoms. Ive been really achey especially in my knees and joints and my fatigue has increased significantly. I’m trying to find any info on how symptoms manifested in others over the course of the SOT treatment but when I can’t really find much online. I’ve never used Facebook but I’ve heard there are some people discussing it there.
Posted 11/9/2020 3:03 AM (GMT 0)
Hi all! I’ve read through this discussion and find it very interesting. I’ve been sick for 8.5 years with Lyme, Bart and Babesia. Starting to lose hope that’ll I’ll ever get better. I herx terribly from anything I take. Just can not detox.

ToddPaul... would you mind sending me info for your Dr. in NYC? I live in NJ. I’m about to start Disulfiram but want to have the SOT option. I have a pretty severe case of these infections and am in constant full body pain. The fatigue has gotten so bad that I can barely function. Makes it really hard to care for my 3 kids.
Posted 12/29/2020 10:06 PM (GMT 0)
Haven't posted in a few weeks. Overall, I wish I could tell you SOT was a miracle cure, but so far that's not the case for me. I am not even sure how to quantify it's effects. I am not mad that I tried it, but I would wait for more information backing up it's claims before spending your money. Also, the answer from the LLMDs when you aren't sure about whether it worked is "try another SOT".
Posted 12/30/2020 4:46 AM (GMT 0)

Inspiredby3 said...
Hi all! I’ve read through this discussion and find it very interesting. I’ve been sick for 8.5 years with Lyme, Bart and Babesia. Starting to lose hope that’ll I’ll ever get better. I herx terribly from anything I take. Just can not detox.

ToddPaul... would you mind sending me info for your Dr. in NYC? I live in NJ. I’m about to start Disulfiram but want to have the SOT option. I have a pretty severe case of these infections and am in constant full body pain. The fatigue has gotten so bad that I can barely function. Makes it really hard to care for my 3 kids.

Just wanted to mention that ToddPaul hasn’t been on the forum for over a month...
He does have his email address in his profile - if you want to contact him.
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