My last consultation with Dr. Kenny De Meirleir

[Esther12]

Sorry for not having read all of this thread, but I'd just like to add that I'm deeply suspicious about a lot of the claims that are made about Herxing, and so on.

This die off effect should only be very short-term, and if it lasts longer than that, it's unlikely to be a good sign. Best of luck to everyone.

 

[Folk]

Sorry for not having read all of this thread, but I'd just like to add that I'm deeply suspicious about a lot of the claims that are made about Herxing, and so on.

This die off effect should only be very short-term, and if it lasts longer than that, it's unlikely to be a good sign. Best of luck to everyone.

I feel the same way.

 

[bertiedog]

I guess I'm wondering how you can tell it is a herx rather than a reaction to the herbs... From what I've read about samento/cats claw, it is quite a powerful herb with many systemic actions. Since it is not a drug specifically targeted towards a pathogen, it seems like any reactions to it could be due to a variety of reasons? Do you consider it a herx if it specifically exacerbates your Lyme symptoms, or how can you tell?

This has been my experience. I cannot tolerate Samento because it gives me continuous , incapacitating migraines. I do fine on all the other Cowden herbs though and take maximum dose without problems. However there is something about Samento that I just cannot tolerate so I have stopped it for good. Haven't had a full blown migraine since stopping it 2 weeks ago just a couple of headaches that responded to just one painkiller.

Pam

 

[bertiedog]

I have used Samento (and Banderol) only for a few months but noticed no change. I have also used Cat's Claw and that made me feel better straight away with no herx reactions of any sort.
I am aware of research that shows it seem to work against Borrelia but that was in vitro and I now doubt that in-vivo it actually kills Borrelia spirochetes.

I have been on the Cowden protocol since last September so now in my 7th month. It has made a big difference to my immune system, it seems so much stronger, have only had 4 mild viruses since then whereas last Winter it was 10. Also I have got over the viruses in a few days and haven't felt anything like so unwell so no question I have benefitted a lot.

I have also felt really well on many days but these past couple of weeks I have had a huge amount of stress that has been ridiculous and so now my adrenals have taken a nose dive and I am having to rest a bit more to recover.

However, I am confident that I will soon be a lot better again as long as I am sensible. I am now walking an average of over 7000 steps daily whereas it would have been a maximum of 5000 before treatment and I wouldn't have been able to sustain things the way I have been doing for the past couple of months.

BTW I don't really herx on the protocol but I did on occasions right at the start.

Pam

 

[Sushi]

This has been my experience. I cannot tolerate Samento because it gives me continuous , incapacitating migraines. I

I do fine on all the other Cowden herbs though and take maximum dose without problems.

Do you mind saying which of the Cowden herbs you are taking or have found most helpful? I have trouble getting my doses up on them--I get some kind of "knock me down reaction."

Sushi

 

[bertiedog]

@Sushi I rotate them as per Cowden Protocol, but take 3 doses daily, so today I had 20 Banderol with 30 drops Mora plus 10 Biurbur early am when I take my thyroid/adrenal meds, lunchtime was 30 Cumanda plus Pinella and Parsley and before evening meal was same as early morning dose. I take a day and a half break every 2 weeks.

I think after the break it will be Cumanda instead of Samento but also Hottuynia and Enula with the Burbur. Because I have worked through the whole protocol (except for Zeolite) I don't know if any of the herbals are more effective than other ones.

I did also take lots of Japanese Knotweed and Cats Claw but had big problems with these because of vasodilation making POTS much more severe and also migraines so stopped them before Christmas. Have to say I am relieved I can tolerate the Cowden ones so well and without herxes just improvement (as long as I manage the stress though because I have adrenal insufficiency). It was ridiculous the amount of work I have been doing these past couple of weeks so really my mini crash is my own fault!

Pam

 

[Hanna]

Thanks for the info Pam, great you are seeing improvement with Cowden's protocole. You also take the serrapeptase ?
I didn't know about Japanese knotweed impact on POTS, too bad. As I tolerate Samento without ill side-effects, perhaps it will be the same for jap knotweed ...

 

[Helen]

You also take the serrapeptase?

FWIW I was proposed to take Biofilm Defense from Kirkman instead of Serrapeptase as KDM had seen some severe reactions from the combination of antibiotics and Serrapeptase. Maybe this is only something to be cautious with if you are on antibiotics for Lyme and co-infections.

 

[maryb]

Last year I was able to take 5 drops of Samento (working up to that from 1/8th) now I can't tolerate any. Same with jap Knotweed, but I may now try the Banderol knowing you have the same problem @bertiedog . What a palaver!!
Glad to hear you've got some improvement, that's good news. BD - Kirkman has curcumin in which I can't take.

From what I can understand, serrapeptase should not be taken until after a few weeks on abx, the theory is that it releases the bacteria from the biofilm causing a lot more to pour into the bloodstream and therefore a lot more being killed by the abx, too much for the body to cope with hence the bad reactions. So it makes sense to wait a few weeks before starting it as the bacterial load will be down.

 

[Hanna]

Thanks @Helen and @maryb good info !
So far, I was taking Wobenzym without ill side effects (I am also on ABX), but was searching for an alternative that has been prescribed especially for biofilm purpose. Biofilm defense was on my list, and I am glad that it figures on KDM's protocole now. Have you tested it yet @Helen ?

 

[Helen]

Thanks @Helen and @maryb good info !
So far, I was taking Wobenzym without ill side effects (I am also on ABX), but was searching for an alternative that has been prescribed especially for biofilm purpose. Biofilm defense was on my list, and I am glad that it figures on KDM's protocole now. Have you tested it yet @Helen ?

Yes, but I can´t tell anything special about it as I am in a mess of probably Herxheimer reactions, side effects and effects from the IV ABX after my third week on it. I guess we should continue this discussion in another thread than
this by @serg1942 .

 

[xrunner]

However, I am confident that I will soon be a lot better again as long as I am sensible. I am now walking an average of over 7000 steps daily whereas it would have been a maximum of 5000 before treatment and I wouldn't have been able to sustain things the way I have been doing for the past couple of months.

That's an encouraging improvement Pam! I wish you to keep getting better and better.

 

[bertiedog]

ou also take the serrapeptase ?

Yes I have been taking 2 daily since I started last September, no problem at all, I have used cheaper serrapeptase as well as the Nutramedix one, I don't think it matters.

I forgot to say I have also taken 9 capsules daily of Andrographis for 3 months last year. Now I keep it for if I have a problem throat developing. It seems very good at dealing with throat viruses. I take it in addition to whatever Cowden herbals I am taking. Because of all the stress I have had recently my throat is now playing up a bit so I have restarted Andrographis at 2 with each meal. It has really helped me not to have to take antibiotics.

Pam

 

[bertiedog]

That's an encouraging improvement Pam. I wish you t

Thanks for that, it does seem encouraging. I am definitely in a phase where my adrenals are negatively reacting to so much stress/work so I am having to raise my dose of steroid a bit, hopefully on for a few days. However after having done this yesterday and today my empty legs have improved and I have felt better within 20 minutes and have been able to go out and walk the dog and also go to do some voluntary work.

Previously when I have had an adrenal crash I would never have responded like this in a positive way. When it happened to me in 2009 I was ill for months so I hope I am not speaking too soon. I know I am not back to where I was but the fact that I could walk the dog ok and enjoy it really is hopeful.

Pam

 

[darroo]

for me TAKUNA seemed to work the best

 

[bertiedog]

Quick Update. Have been up to 10,500 steps on a couple of days but I am now averaging nearer to 9000 which I feel is pretty impressive having started at 5,500 average in September.

I have had problems with my immune system though and needed 2 separate courses of Azithromycin, one at the end of March and again 3 weeks later for nasty throat infections. I have responded pretty quickly to the Azithro on both occasions but before I was taking the antibiotic I did feel bad with all the old ME symptoms coming back especially the lack of energy and the migraines.

During the evenings I am often able to do some gentle jogging on top of being active in the days, hence my number of steps going up so much.

As you can imagine I am finding it quite difficult to read @Jonathan Edwards comments regarding ME/CFS and late stage Lyme being unlikely. I was diagnosed only last year through Infectolab and started herbal treatment late last August with these great improvements. My illness dates back to 1996 when I had an inflammatory type illness that I thought was RA but only 2 weeks previously (my GP said it was just a virus and offered me no testing) I had been in the New Forest walking with my dog. I also had a history of getting nasty bites but I don't remember the typical rash that is mentioned.

Pam

 

[Helen]

@bertiedog Hi Pam, Great you are having such an improvement after that long time of beeing sick, and "only" by herbal treatment. May I ask about your POTS, the same or ...?

but I don't remember the typical rash that is mentioned.

FWIW it has been proposed being a sign of an impaired immune system.

 

[bertiedog]

@Helen Interesting about your note regarding sign of an impaired immune system.

The POTS isn't causing me any problems except when it is hot and I am doing physical stuff. I have to take another dose of the low dose betablocker to calm things down when conditions are like that.

I am still not great on getting up but I do have energy in my legs whereas I didn't used to but I wouldn't be able to just get up and get on with life. I need till about 9.30 to do that and still need to pace. However, I am not convinced that is anything to do with the borrelia, more likely to me being steroid dependent or it could be a combination of the two. Maybe as more time goes on it will become clearer.

One other thing I am having to work on is to be a lot stricter with my eating a low carb diet and only eating once between meals to keep my sugars down because they would otherwise be at prediabetic levels. I am not overweight but I don't think I make enough first phase insulin. The readings are improving and are just in the normal range now and being able to exercise now is making a huge difference. If I couldn't exercise I would probably need medication to bring them back down after eating especialy after my evening meal.

Yes I am very impressed with the Cowden herbs. Last week I added a small amount of the herb Tansy and have stopped the Andrographis because I was getting bad migraines again but since last August I have taken large amounts of Cats Claw, Andrograhis and Japanese Knotweed as well as the Cowden ones. Unfortunately I don't do well on the Buhner herbs because apart from Andrographis the other two are potent vasodilators which is the last thing I need as a POTS sufferer. They messed up my electrolytes and gave me pretty low bp and I needed as few doses of Fludrocortisone to put me right but since the beginning of the year, once I had stopped the JK and CC I haven't had further problems.

I did read that Stephen Buhner didn't think the Cowden herbs were sufficiently strong to get one well but all I know is thaat there are many on FB who just did Cowden and got well and several of them had been sick for a very long time similar to me.

Pam

 

[Helen]

@bertiedog
Hi Pam,
Thank you for sharing your experiences and sorry for a late reply. I am slowly coming back after IV abx during the first days of this week. I was particularly interested in POTS as it seems to get better, or disappear, for many people when the Lyme infection is treated. Hopefully you will continue your recovery journey although your adrenals just got too much to do for a while.

Your experiences of the herbal treatment is valuable to get to know about as I probably will continue on herbs after the infusions. Also I think your "case" is good for many to get inspired by, when treatment options are so limited. Best

 

[stetson28]

@Helen Interesting about your note regarding sign of an impaired immune system.

The POTS isn't causing me any problems except when it is hot and I am doing physical stuff. I have to take another dose of the low dose betablocker to calm things down when conditions are like that.

I am still not great on getting up but I do have energy in my legs whereas I didn't used to but I wouldn't be able to just get up and get on with life. I need till about 9.30 to do that and still need to pace. However, I am not convinced that is anything to do with the borrelia, more likely to me being steroid dependent or it could be a combination of the two. Maybe as more time goes on it will become clearer.

One other thing I am having to work on is to be a lot stricter with my eating a low carb diet and only eating once between meals to keep my sugars down because they would otherwise be at prediabetic levels. I am not overweight but I don't think I make enough first phase insulin. The readings are improving and are just in the normal range now and being able to exercise now is making a huge difference. If I couldn't exercise I would probably need medication to bring them back down after eating especialy after my evening meal.

Yes I am very impressed with the Cowden herbs. Last week I added a small amount of the herb Tansy and have stopped the Andrographis because I was getting bad migraines again but since last August I have taken large amounts of Cats Claw, Andrograhis and Japanese Knotweed as well as the Cowden ones. Unfortunately I don't do well on the Buhner herbs because apart from Andrographis the other two are potent vasodilators which is the last thing I need as a POTS sufferer. They messed up my electrolytes and gave me pretty low bp and I needed as few doses of Fludrocortisone to put me right but since the beginning of the year, once I had stopped the JK and CC I haven't had further problems.

I did read that Stephen Buhner didn't think the Cowden herbs were sufficiently strong to get one well but all I know is thaat there are many on FB who just did Cowden and got well and several of them had been sick for a very long time similar to me.

Pam

Hello Pam, did you receive any benefit from the tansy oil or any of the other herbs? Thank you