Dr Horowitz's take on SEID (Lyme Dr)

[Vic]

Triggering

Everyone has these triggers, but for some reason in some people with CFS/ME they can sometimes cause fatigue for some reason. -genic means "producing" or "produced by." There is a physical difference between people with CFS/ME and others that is what produces the chronic fatigue.

 

[justy]

Oh, and the recent Norwegian review of ME cases found that 75% of KDM's patients reported improvement, which was much better than the GET/CBT results, etc.

Do you by any chance have a link?

 

[minkeygirl]

You make good points. It just irritates me when I see what I think is usury bullshit being sold to vulnerable people with a very high chance of causing them real damage.

And some people might say that what you are telling us is usury bullshit being sold to vulnerable people with a very high chance of causing real damage? Why are you any different than them?

 

[bertiedog]

Because when I try to explain I usually get accused of diagnosing people, so end up just deleting what I write. Plus it's not so easily explained, and people with CFS are very hostile to any kind of causal suggestion that doesn't have to do with the immune, central nervous, or digestive systems. I'll be out with it once I finish putting together my theory and compiling all the evidence.

Well perhaps you can explain this to me. If tests like the Infectolab Ellispot LTT are so useless (I got a strongly positive results last year and probably co-infection) would you please try and explain to me why my immune system is becoming stronger this winter? I have been using Dr Cowden's herbal treatment since the end of August last year plus I have been taking a few of the Buhner herbs which are specifically for Lyme disease.

Since last July I have only needed to take 3 days worth of Penicillin for a throat infection, otherwise its just been the herbs. I have had the best winter for over 20 years with regard to picking up viruses/infections. Last winter for example I had around 11 viruses including the Norovirus, all of them made me feel pretty ill and unable to do anything more than lie down and taking 2 weeks to recover. I cannot remember how many different antibiotics I had to have last year for throat infections but it was at least 4.

This hasn't happened to me once this winter. I have had 4 similar viruses this winter but I got over them within a few days and I wasn't anything like as ill as usual.

I realise this isn't scientific proof but I think you will agree its certainly positive and wouldn't have happened if I hadn't paid to have the test done last year.

Pam

 

[msf]

Hi Justy,

http://me-foreningen.com/meforeningen/innhold/div/2014/05/ME-Nat-Norwegian-Survey-Abr-Eng-Ver.pdf

They didn't say how many of his patients they surveyed, just that it was not many, but unless there statistics were really rough it must have been at least 20 - 1/10 worse and 3/4 better.

 

[justy]

Thank you @msf looks like real medical therapy as per KDM was the second least effective, with 70% of people feeling an improvement good news!

 

[Vic]

Well perhaps you can explain this to me. If tests like the Infectolab Ellispot LTT are so useless (I got a strongly positive results last year and probably co-infection) would you please try and explain to me why my immune system is becoming stronger this winter? I have been using Dr Cowden's herbal treatment since the end of August last year plus I have been taking a few of the Buhner herbs which are specifically for Lyme disease.

Since last July I have only needed to take 3 days worth of Penicillin for a throat infection, otherwise its just been the herbs. I have had the best winter for over 20 years with regard to picking up viruses/infections. Last winter for example I had around 11 viruses including the Norovirus, all of them made me feel pretty ill and unable to do anything more than lie down and taking 2 weeks to recover. I cannot remember how many different antibiotics I had to have last year for throat infections but it was at least 4.

This hasn't happened to me once this winter. I have had 4 similar viruses this winter but I got over them within a few days and I wasn't anything like as ill as usual.

I realise this isn't scientific proof but I think you will agree its certainly positive and wouldn't have happened if I hadn't paid to have the test done last year.

Pam

I'm actually saying nutrition is one of the real reasons people get better from "chronic lyme." My beef is with the antibiotics mostly. Plus, there's no reason to think those herbs you're taking are "specifically for Lyme disease." They could be specifically for the symptoms thought to be caused by Lyme, or Borrelia, but there's no reason to believe the way they're helping is because they're killing Borrelia rather than through some other mechanism, or killing off other stuff like fungus and destroying fibrin with Serrapeptase. You could also be doing other things different which you may or may not be aware of.

I used to get sick every winter too, EVERY winter. But the last two winters nothing caused by viruses.

 

[minkeygirl]

You have no way of knowing whether the herbals are killing bacteria or not. You're just taking a wild guess because you don't like ABX. Then don't take them.

I never heard of a balanced diet killing bacteria or a virus for that matter. Not having a virus because you ate healthy has nothing to do with chronic lymes and it won't stop viruses from replicating if you already have one.

I'm unclear on what you are basing your ideas on besides looking at other people's research and deciding you disagree.

It seems you want us to disregard doctors and researchers who have been in the trenches with us for decades in favor of ideas that have no foundation in science or research.

 

[Vic]

You have no way of knowing whether the herbals are killing bacteria or not. You're just taking a wild guess because you don't like ABX. Then don't take them.

I never heard of a balanced diet killing bacteria or a virus for that matter. Not having a virus because you ate healthy has nothing to do with chronic lymes and it won't stop viruses from replicating if you already have one.

I'm unclear on what you are basing your ideas on besides looking at other people's research and deciding you disagree.

It seems you want us to disregard doctors and researchers who have been in the trenches with us for decades in favor of ideas that have no foundation in science or research.

@bertiedog just said the Cowden Protocol, which is mostly an herbal protocol, was helping him get better. So according to his experience, eating healthy does help improve symptoms (regardless of whether or not they're caused by infection or something else).

I base my ideas on my repetitive experience, repetitive observation, and research. A hypothesis at the moment until it's tested further.

 

[bertiedog]

@Vic I don't know where you got the idea about my eating healthily was helping me. I have been having an excellent diet for over 10 years but it wasn't helping my IS at all. Its the herbal protocol that is helping my IS cos I haven't changed anything else, diet is the same.

Actually to be honest, I have changed to having a green smoothie every other morning cos I treated myself to a Nutribullet but that has only been the last couple of weeks so it cannot be anything to do with that because the improvement in my IS has been since late December really.

BTW I still get PEM if I have too much activity doing things like food shopping plus 3 hours office work and then walking the dog in the afternoon for 25 minutes (Rest perods of lying down for a few hours inbetween). I wear a Viofit activity watch and can see exactly how much activity I have and on Thursday it was close to 8700 steps and I felt really good, no sign of any problems but when I woke up yesterday I could feel a migraine building and felt horrible the rest of the day. Dizzy, ulcers in the roof of my mouth plus pain in my head, neck/shoulders and very poor energy. I only managed about 4300 steps yesterday in comparison and felt thoroughly miserable and a bit depressed which is very unusual for me.

Thankfully today I am recovered and so far 6500 steps without any problems and good mood plus the ulcers in my mouth aren't hurting and seem to be disappearing.

With regard to testing, I know you don't like the Infectolab LTT test for borrelia which was strongly positive, but I also had a positive Western Blot Band 41 and low CD57 so when you put all those things together it sort of fits with borrelia causing me problems still. I think I got bitten in 1996 in the New Forest where I regularly visited with my dog but didn't know anything about Lyme Disease. Ten days after being there I developed an inflammatory illness where I hurt all over and had swollen knees and wrists but my GP said this was a virus so no treatment. Ever after that I would get bouts of inflammation that seemed to cause me problems for a few days and would then disappear. I actually thought I had RA and by 2000 I was in a state of collapse and had to give up teaching. I have never recovered to pre 1996 level of health but I can feel really well some days as long as I don't do too much physical stuff.

On a final point I am a soon to be 67 year old woman from the UK!

Pam

 

[minkeygirl]

There are a lot of people, not just here, who have gotten help with the herbal protocol. Others have gotten violently ill from it so they have had to stop and go to ABX.

As @bertiedog just said, you are misinformed about what has helped her. And this forum is littered with people who have altered their diet. Some have had good luck, others are still quite ill. I have had no change in my health since changing my diet.

As someone previously said, you can't cherry pick what you like and what you don't and then hypothesize. And you can't say one person got better therefore everyone will get better. And I have to ask, why in the world should any of us discount what the medical professionals with years of experience tell us in favor of some unknown who knows zero about CFS and ME.

@bertiedog maybe if you sit up straight you'll be cured?

 

[Vic]

@Vic I don't know where you got the idea about my eating healthily was helping me. I have been having an excellent diet for over 10 years but it wasn't helping my IS at all. Its the herbal protocol that is helping my IS cos I haven't changed anything else, diet is the same.

Thankfully today I am recovered and so far 6500 steps without any problems and good mood plus the ulcers in my mouth aren't hurting and seem to be disappearing.

What are herbs, plants? You eat plants right? = Diet

Awesome to hear you're doing better. I've forgone all supplements but omegas during my progress. Good chance there are some things that would have been making it go much faster.

As someone previously said, you can't cherry pick what you like and what you don't and then hypothesize. And you can't say one person got better therefore everyone will get better. And I have to ask, why in the world should any of us discount what the medical professionals with years of experience tell us in favor of some unknown who knows zero about CFS and ME.

So far all I've given is a piece of my perspective. When I replied to these threads about Lyme it was out of disgust of the bad info I think LLMDs have been spreading, because they're the ones cherry-picking when they are unable to produce solid studies. They choose the cop-out that "Oh, Abx and protocols only work some of the time because there are actually tons of different infections so we'll call it MSIDS now!" The actual cause is much more simple yet complicated at the same time.

@bertiedog maybe if you sit up straight you'll be cured?

No, if you sit up straight while your upper torso is collapsed it will just cause more strain on your systems. Basically how some versions of OI work.