Your thoughts/opinions - my progress/residuals

skinny_joe said...
Im sure people will be critical of me for this. People have ailments when they get old. Not everything is a tick borne illness or damage was done by something long gone. Most folks on here recommend treating until your blue in the face and then some and when your symptoms don't go away its the wrong treatment or you need to treat longer. Keep that in mind asking for advice on here as Im sure your aware.

Yes, there's times where lyme can do permanent damage like Ben Petrick, Michael J Fox and even Dr. Neil Spector -> https://youtu.be/lke1k_pogvq

I've had this discussion with Astroman about the thyroid...

But I think the symptoms Girlie is describing here can be distinguish from thyroid damage, heart damage, and nerve damage and even Parkinsons... Because they come and go.... The life cycle of bartonella for me and many others, hits you in the morning and at night... If you've dealt with the bacteria before... Certain things are easy distinguishable and really all you have to do is, use the search box up above and match your symptoms here on the forum with others... If they're slowly going away with antiotibitc treatment, that most likely means you'll be able to erradicate them.

Again for me, Dapsone got rid of my sciatica and spinal pain partially... When I took Disulfiram, it got rid of all the symptoms permanenantely...

Considering both of these antibiotics half life, it all makes sense
--------------------------------------
Dapsone Half life: 10-50 hours
Disulfiram Half life: 60–120 hours

I've been doing this a long time Skinny Joe, going on 11-12 years or so now, even longer if you count how long I haven't treated... I'm hear to tell you that all the symptoms Girlie suffers with, I suffered with and have reversed just about all of them... Including a gluten sensitivity, which I now can't believe is finally starting to go away after decade, but it makes sense considering how bad my body used to get inflamed, even my brain after I eat certain grain and gluten...

Dr. M in Keego Harbor Michigan said my gluten intolerance wouldn't be reversible 9 years ago when I saw him, he was wrong.... Happy to say!

Girlie said...

What has kept me from working?
Other symptoms. Lately it’s:
The nerve pain - left shoulder blade area, arm and hand; head pressure and poor memory...

Earlier on it would be those symptoms plus: rib pain, shivering, POTS, twitching, joint pain , muscle pain, tailbone pain, sore scalp, sore feet, sweating, anxiety, bouts of depression, tremors - etc etc

Hey - Charlie - I may end up on Disulfuram - I’m at the point where I’m so done with this - and I’m going to pay good attention to how I feel on this next cycle - been off the abx for 4 (or is it 5? weeks) now and am getting ready for another round.

Remember Girlie, start of slow, you Dr. Liegner recommends a 1/8th of a 62.5mg every 3rd day, then ramping up
http://disulfiram.net/

Disulfiram is safe as long as you don't go to fast, if you're starting to have super increase anxiety and paranoia which is leading to psyhcosis, ramp off, go a few days off, then start back up again when those bad symptoms dissapear...

Some have found that their libido comes back when they're on disulfiram, it did for me. Some claim this is all from just increase in dopamine, I don't think so... Some of it may be, but I also get similar effect increase in sex drive when I've been on pyrazinamide and doxyxycline for bartonella.

Disulfiram herxing with bartonella can be quite severe at times, especially when you start off. Somewhere down the line you can add in doxy or rifampin at a super low dosage and will be able to tolerate it, but it takes some time. But honest, I'd rather rotate in pyrazinamide and doxyxycline...

For me, it's obvious that Disulfiram seems to wake up bartonella and after doing DSF for a few weeks, I follow up with pyrazinamide/doxyxycline, it kills bart and shuts down all the neuro symptoms I'm feeling...

Lately, I haven't had to go back to Disulfiram, because when I workout my bartonella flares up all on it's own, then I just treat with pyrazinamide/doxyxycline.

Girlie I think even if you just take DSF for a month, it will make a difference in your nerve and spinal pain, it did for me... It took away all my spinal issues and sciatica... I was one of the first to take it on this forum, if you remember

This was May of 2018, if you want to read back what I said, titled "Confirmation on Disulfiram with Lyme"
https://www.healingwell.com/community/default.aspx?f=30&m=4014137#gsc.tab=0

Charlie55 said...

I tried the drug and I never herxed so much in my life, it has helped me from relapsing after being off antibiotics. Looks very promising.

I'm sure when I'm done with Bartonella, I'll have to kind of pulse Disulfiram every 3-4 weeks or take it long term, kinda of what Dr. B recommended treating the persisters, the round body forms...

Post Edited (Charlie55) : 7/26/2020 12:35:22 PM (GMT-6)

skinny_joe said...
Im sure people will be critical of me for this. People have ailments when they get old. Not everything is a tick borne illness or damage was done by something long gone. Most folks on here recommend treating until your blue in the face and then some and when your symptoms don't go away its the wrong treatment or you need to treat longer. Keep that in mind asking for advice on here as Im sure your aware.

And considering Ben Petrick and watching this video here... They were using electrodes for deep brain stimulation to a part of the brain called the basal ganglia to help treat the symptoms of Parkinson's... In the video you can see Ben going from continuously shaking to normal instantly after the electrode treatment. It's obvious Ben has never given up treatment even after contracting Parkinsons, I mean what if they find out a new treatment for Parkinsons? Scientific discoveries are always happening. Ben has children, so I know he thinks he has to keep trying...

https://youtu.be/bbr-cztl7aw

I still wonder if disulfiram may hep reverse parkinsons and other brain wasting diseases, targeting the nematodes, which have been shown to host borrelia spirochetes...
http://outbreaknewstoday.com/lyme-discovery-borrelia-bacteria-hides-inside-parasitic-worms-causing-chronic-brain-diseases-13216/

For me, I always been an athlete like Ben Petrick... Giving up has never been my fortay, lol, sure I've quit jobs in the past... But when it comes to sports, working out and lifting weights, I've never stopped...

It's about hope, which we've obviously been given with this new drug Disulfiram and now a new one that's set to come out called azlocillin. Which I think doesn't have as easy access, but still, all of you have to keep fighting, even if that means just getting out for a walk every so often soaking up some Vitamin D and getting the blood circulating...

And I have to agree with Dr. B, you have to workout and exercise to help fight these pathogens as it helps circulate the drugs in your blood, drive them even deeper into the tissue.

https://www.prohealth.com/library/evergreen_pages/lyme-disease-exercise

Dr. B said...
Exercise is an essential component of any Lyme disease treatment plan. Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary

Post Edited (Charlie55) : 7/26/2020 12:47:13 PM (GMT-6)

Girlie, what about Clindamycin/Bactrim to hit brain bugs - have you considered them or used already and they made less of a difference?

Charlie: “ Yes, there's times where lyme can do permanent damage like Ben Petrick, Michael J Fox and even Dr. Neil Spector -> https://youtu.be/lke1k_pogvq”

Michael J Fox didn’t treat Lyme disease - so that’s different than what we’re talking about.
Right? Perhaps if he had treated, he would be in better shape today.

I saw a video Dr J interview and he mentioned if he catches ALS early on - he can help them. He mentioned something about still being able to swallow - is a criteria to measure if he can reverse or halt their condition.

Remember the Dr Martz story?
He is so lucky to finally catch it.

Dmitry said...


Good observation and I noticed something similar. Lot of bacteria means lots of background inflammation and sugar spikes sort of contribute to it.

Oh most definitely... When you start getting close to remission or better in general, you start to notice less flares when eating carbs and sugar... I suspect once you're in remission, you'll be able to tolerate sugar and carbs just fine like before.

Problem will be is when you're off antibiotics, eating some carbs and sugar will most likely make you relapse with those round body forms dormant forms(persister cells), hopefully Disulfiram will help dig out those pesty little critters to stop so many of us from relapsing once we get rid of bartonella/babesia.

Some lyme patients like the Mandy Hughes or Alex Baldwin just cut out sugar and low carb diet for the rest of their lives... You shouldn't have to do that, hopefully Disulfiram will put an end to this...

Don't get me wrong, sugar is a big problem and a lot of us shouldn't be eating it anyways. However, I think some healthy carbs have their uses in a healthy diet and even fructose from fruit. I used to notice spikes and flares even when I eat fruit, which isn't normal.

Post Edited (Charlie55) : 7/26/2020 6:59:01 PM (GMT-6)

Could the memory issues be caused by an imbalance in your gut microbiome?

Herxing and work/school don't mix well. That is the main reason I have went with a focus on lifestyle factors more than treatment.

I take Argentyn 23 once a week, but I don’t think I need more herbs/abx to get well. I work on a stronger immune system that will take care of it instead. I already function quite well with mostly some brain fog now and then + some sensitivities. Brain fog have been decreasing a lot lately as I have been working more on stress and MCAS. When I do take treatment they increase and I get some other symptoms, but I rather be able to continue going to school and work, than get well faster.

Deep_sleep said...
After thinking about what you wrote Girlie, maybe you are right. It would be good to add some more treatment on days with less performance, so I took 2 drops A-l complex this morning. I find it hard when it's constant group work in school and I hate to be the guy with brain fog that doesn't do my share. But it's a slow day today, and then two days off so seems like a good time to test how I react.

Well I’m off work for 13 days now - so I will do a round of the Maintenance protocol and try to pay attention to how I am affected.

My concern isn’t just being hit hard with herxing for a few days - but is it going to put my brain back several notches and my memory is going to be like it was a year ago.

It has improved some - and lately - as in the past two weeks - I seem to be able to retain more information.
Certainly not back to prelyme function but still better.

Started abx today (maintenance protocol)

Mino, Rifabutin, Ceftin plus lactoferrin and xylitol for biofilms.

Felt “ heady “ all afternoon but evening was pretty good.
Tomorrow is an off day and then take the abx on Thursday again.

I’m off work until the 27th.

I go into shaking cold spells (teeth chattering lose feeling in extremities) when I’m off antibiotics, I’ve over exerted, or my bp runs low. Sometimes I find cold spells come when biofilm has been broken and infection not dealt with.