Met with Infectious Disease Dr.

multifacetedme -

What do your c4a and cd-57 look like?

Lyme kicks the immune systems arse, thus many dont have lyme antibodies for the western blot to find- the longer you have it, the less antibodies generally.

Plus Lyme BB is smart and it runs/hides from the immune system by leaving areas areas with blood high flow like your veins. Thats why it like joints and soft tissue- little blood flow there, possibly non-existant immune cells there. Immune killer cells and their cousins need blood to move. BB lyme moves on its own- to other areas with less blood and less oxygen.

That doesnt mean you have lyme, it just means those tests cant prove you dont have lyme.

But what are your symptoms like compared to when you joined here??

Black Jack Davey - I was in the same frame of mind as you when I first started treatment. My LLMD only prescribed Doxy 100 1x a day for 1 month, plus Des Bio Nosode Borrelia/Babesia. I was eager to ramp up treatment and was on the forum reading about all the people with major antibiotic regimes and IVs etc. I was very worried that I was on too low of a dose. However, I was so toxic from being sick for so long that even the low dose Doxy was causing major herxes. When I called the office about the herxes, they said to stay on the low dose.

My next visit, he put me on Doxy 100 2x a day and started me on cholestyramine. I was still worried it wasn't enough and started taking a biofilm buster Biocidin. Well, I made myself completely sick with herxing 24/7. He told me to stop and he would get to the biofilms but that its important to go slowly so the body can detox properly otherwise, you will just be storing toxins and they will cause problems later down the road.

He eventually ramped up to the 400/day of Doxy for a six weeks, then the next month switched me to Minocycline (1 200/day) and Tinodozle (250/day). Again, these are super low doses and noone I know on the forum was ever on such low doses but by month 3, I was 85% healed. So, 6 months total of low dose antibiotics. I did a total of 9 months.

In between he prescribed a couple of weeks of rifampin for Bartonella plus the Des Bios Bartonella remedy. One drop made me the scratches appear. Again, I was worried because all these people on the forum were on Rifampin for a year and I only took it for two weeks (2x) one month apart.

I guess my point is that I think we want results fast, but our bodies can only take so much. I think you probably have presented clinically with symptoms that warrant a slower approach.

I also think that many doctors are now understanding that its our immune system that needs to heal up, and that there are major downsides to major antibiotics. I think it is case by case. You may need them, but in my opinion, you are sounding like you are very toxic and major anything is going to be very difficult for your body to take.

Anyway, just my two cents.

I have to agree with traveler. My worst herxes are worse than my illness ever was at any stage. It can get really bad and I never even pushed them that hard. That was on herbs that are supposed to be strong antiinflammatories too not heavy duty antibiotics. Ever seen those people on chemo therapy who were much sicker after taking the treatment and still die? Sometimes they die even sooner than they would from the cancer? The treatment can be worse than the disease and being aggressive only guarantees more suffering. In fact i wouldnt be surprised if that backwards-a** bacteria loves all that inflammation. Also i've noticed this effect where you sort of "break the seal" on the toxin containment so to speak. Or rather "fill the bucket" or however you want to picture it. Where you can tolerate a dose of antimicrobial easy, but at a certain dose you cross a threshold of no return. Any additional dose no matter how small produces unbearable pain and the only option is to stop and take the hit... relapse... new symptoms... start again slower after a month or two of detox. This just happened to me with knotweed. I was doing great but ramped up a bit too quick. Then i became intolerant to all doses, had to stop altogether and am worse off than before. Slow and steady wins the race here. Be strategic, persistent, but kind to your body in the process. Powering through it is miserable at best, dangerous at worst.

cr3ativegirl said...
Black Jack Davey - I was in the same frame of mind as you when I first started treatment. My LLMD only prescribed Doxy 100 1x a day for 1 month, plus Des Bio Nosode Borrelia/Babesia. I was eager to ramp up treatment and was on the forum reading about all the people with major antibiotic regimes and IVs etc. I was very worried that I was on too low of a dose. However, I was so toxic from being sick for so long that even the low dose Doxy was causing major herxes. When I called the office about the herxes, they said to stay on the low dose.

My next visit, he put me on Doxy 100 2x a day and started me on cholestyramine. I was still worried it wasn't enough and started taking a biofilm buster Biocidin. Well, I made myself completely sick with herxing 24/7. He told me to stop and he would get to the biofilms but that its important to go slowly so the body can detox properly otherwise, you will just be storing toxins and they will cause problems later down the road.

He eventually ramped up to the 400/day of Doxy for a six weeks, then the next month switched me to Minocycline (1 200/day) and Tinodozle (250/day). Again, these are super low doses and noone I know on the forum was ever on such low doses but by month 3, I was 85% healed. So, 6 months total of low dose antibiotics. I did a total of 9 months.

In between he prescribed a couple of weeks of rifampin for Bartonella plus the Des Bios Bartonella remedy. One drop made me the scratches appear. Again, I was worried because all these people on the forum were on Rifampin for a year and I only took it for two weeks (2x) one month apart.

I guess my point is that I think we want results fast, but our bodies can only take so much. I think you probably have presented clinically with symptoms that warrant a slower approach.

I also think that many doctors are now understanding that its our immune system that needs to heal up, and that there are major downsides to major antibiotics. I think it is case by case. You may need them, but in my opinion, you are sounding like you are very toxic and major anything is going to be very difficult for your body to take.

Anyway, just my two cents.

Thanks cr3ativegirl for the thoughtful reply. How are you doing now? I'd be ecstatic to be 85% healed.

It's interesting that I didn't herx at all from a month of doxy at 200mg 2x a day. Neither have I herxed from the artemesinin. But, I can sure be sensitive to certain things, like that a-bab. Dr. WA, a local LLND says about a-bab "This formula activates the immune response for the management of acute and chronic Babesiosis" If that's the case, then my near immediate reaction to the stuff would theoretically be the immune response. But what I feel from taking the a-Bab is that my cortisol levels shoot up through the roof. I get wired like I'm taking speed from it. That's an exacerbation of an existing symptom however. I guess the agitation could be happening when my immune system is fighting. I just don't see how it could start a massive die off in an hour. While otoh, artemesinin supposedly kills the bacteria and I've not had noticeable herx from it.

They say you don't herx from Bartonella die off and it's possible I don't have Bb. Could that explain why I didn't herx from the doxy?

You do make a compelling point about starting slowly however. But it's torture! I'm a fast guy. I walk(ed) fast, work fast, eat fast, etc. Ahhhhhhhhhhh! 😲Guess I'll have to learn.

Psilociraptor said...
Trav do you have any actual studies talking about the inaccuracies of the test? I know this is common belief in the lyme circles and my own experience supports it but every time i see some criticism saying Lyme tests are 99% accurate it makes me wonder what papers i should be keeping in my arsenal lol. That was also pretty cool about Igenex using strains taken from humans... do they just mix it all together or do they test against strains from the region of the patient?

Everything went haywire at the Dearborne Conference in 1994, when they changed all the "requirements" for a positive test: www.actionlyme.org/DEARBORN_PDF.pdf Just remember, when they were presenting this information, they were trying to control the situation, so they are only presenting their side of the "research".

I would need time to gather more documents supporting the idea that testing is poor, but it can be done - just not this week for me, as I have to locate and organize a bunch of medical records for my hubby for his upcoming consult with a spinal surgeon. =/ If you wish to work on this together, I'd be more than happy to help later on though.

astroman said...

Girlie said...
Astro - multifaceted posted in 2016 - the date is incorrect - a gliche.

She has posted since then that she is doing much better.

then someone should fix it. I thought it look like time travel.

were we hacked? LOL

I wrote Traveler and Girlie about it yesterday. I told them I felt like I was in the twilight zone.

Traveler said...

Psilociraptor said...
Trav do you have any actual studies talking about the inaccuracies of the test? I know this is common belief in the lyme circles and my own experience supports it but every time i see some criticism saying Lyme tests are 99% accurate it makes me wonder what papers i should be keeping in my arsenal lol. That was also pretty cool about Igenex using strains taken from humans... do they just mix it all together or do they test against strains from the region of the patient?

Everything went haywire at the Dearborne Conference in 1994, when they changed all the "requirements" for a positive test: www.actionlyme.org/DEARBORN_PDF.pdf Just remember, when they were presenting this information, they were trying to control the situation, so they are only presenting their side of the "research".

I would need time to gather more documents supporting the idea that testing is poor, but it can be done - just not this week for me, as I have to locate and organize a bunch of medical records for my hubby for his upcoming consult with a spinal surgeon. =/ If you wish to work on this together, I'd be more than happy to help later on though.

Oh don't stress over it. I could keep searching myself. I just know you always seem to have links on hand so i was curious if this was one of those times. I'll check out that one you sent me! Now that i think of it buhner had a section on testing so that's probably another good place to start.

Traveler said...

Psilociraptor said...
Trav do you have any actual studies talking about the inaccuracies of the test? I know this is common belief in the lyme circles and my own experience supports it but every time i see some criticism saying Lyme tests are 99% accurate it makes me wonder what papers i should be keeping in my arsenal lol. That was also pretty cool about Igenex using strains taken from humans... do they just mix it all together or do they test against strains from the region of the patient?

Everything went haywire at the Dearborne Conference in 1994, when they changed all the "requirements" for a positive test: www.actionlyme.org/DEARBORN_PDF.pdf Just remember, when they were presenting this information, they were trying to control the situation, so they are only presenting their side of the "research".

I would need time to gather more documents supporting the idea that testing is poor, but it can be done - just not this week for me, as I have to locate and organize a bunch of medical records for my hubby for his upcoming consult with a spinal surgeon. =/ If you wish to work on this together, I'd be more than happy to help later on though.

It's very easy to go on pubmed and find these studies. There are many, even done by institutions like Yale. There was a meta-analysis that was done this winter that reviews all the literature in Plos one.