Anyone w/ suspected resistant bart/myco give this a go yet?
Thanks
Derek
Posted by djf2005 (Member # 11449) on :
I have yet to be able to find anyone that has tried this. This is odd. Anyone??
Posted by SForsgren (Member # 7686) on :
Lots of people have tried it. I know several. It seemed to be pretty strong as some reported GI issues - likely the result of Bartonella die-off.
Posted by djf2005 (Member # 11449) on :
Thanks Scott.
I have one friend who is about to try it, I also am planning on rotating it in once Banderol is done. (I am still on month one, phase I)
Interesting you mentioned some experiencing GI issues ON it as I am hoping it will resolve/help mine.(assuming they are caused by bartonella)
It's just surprising to see not many responses on LN as there are many people who suspect they have "resistant" bart/myco/mystery bug and this is rumored to possibly be effective.
Anyone else have an experience they can share I'd appreciate it.
Much thanks
Derek
Posted by Blackstone (Member # 9453) on :
NutraMedix is notoriously expensive I've found. I'm not sure this is any better than other HH supplements? Zhang isn't much cheaper, but his HH has been around for awhile.
Posted by djf2005 (Member # 11449) on :
I used Zhang for 3-4 months w/ little result.
I can't speak from personal experience regarding the cost of Nutramedix HH, but I can vouch for the other herbs being worth the price.
That's kinda why I posted this, hoping to find some patient experiences using it currently.
The other thing I find intriguing is it how it is formulated and the fact that it's claimed to treat resistant strains of BLO.
With HH, it's all about how they make it, and there's a few key ingredients that can make it more or less potent. The NM blend meets these requirements.
I guess I will report back once I have tried it..
Derek
Posted by psr1 (Member # 22957) on :
djf2005: How are you going to introduce it? Does it produce herxes? Are you going to do the one drop at a time thing?
Posted by joalo (Member # 12752) on :
I just started HH this morning. I tested good to take ten drops twice a day.
How much will you be taking?
Posted by djf2005 (Member # 11449) on :
I will be starting at 1 drop day and going from there based on response.
As far as it producing herxes, everyone is different, but I'd say yes, it can produce herxes.
It would be cool if we all report back on this thread w/ results.
Derek
Posted by djf2005 (Member # 11449) on :
Anyone start yet?
I just got it in the mail the other day and have not yet decided when to start.
I just arrived at the full dose of Samento and Banderol daily, and according to my book I am to stick w/ that for over 6 weeks.
I don't think I am going to wait that long to try it, perhaps in a week or two I will throw it in and see what happens.
I want to believe so badly that this can be beaten w/ herbs and natural products, the jury is still out.
Derek
Posted by djf2005 (Member # 11449) on :
Joalo-
Any reports on the HH drops yet?
Thanks
Posted by seekhelp (Member # 15067) on :
Well DJF, how many of Dr. H's patients actually do beat it with herbs? Does he have statistics? I ask because my LLMD has a response rate for every treatment under the sun. What response rate equates to, I don't know.
The only response I care about is complete elimination of symptoms. So while I've been on drugs that have between a 45% - 67% 'response rate', in my experience, I have a ZERO response rate as I still have many problems.
Posted by djf2005 (Member # 11449) on :
Hey Seek-
Yes actually he mentioned stats at his 08 lyme autism presentation.
I think it was 60-70% improved beyond what they had on abx prior to NM protocol.
Unfortunately, the presentation has been removed from the internet (this is the one we were all trying to re-locate)
On the other hand, I don't know how much response rates or numbers matter since we are all so uniquely different and have different issues.
Sorry about your ZERO response rate, keep trying man. I am frustrated too.
PM your doc if you wouldnt mind also.
Best
Derek
Posted by psr1 (Member # 22957) on :
WHat is bart die-off like? Is it identical to Lyme die-off? Do Lyme and all the co-infections produce neurotoxins?
Posted by djf2005 (Member # 11449) on :
This is a very broad spectrum question that cannot be applied to the masses.
It can be the same, it can be different, etc.
In a lot of cases, Bartonella die-off is very hard to tolerate.
Most of the infections those w/ lyme carry produce neuro-toxins.
Derek
Posted by Hoosiers51 (Member # 15759) on :
Derek,
Are you talking about a presentation by east coast or west coast Dr. H?
Posted by djf2005 (Member # 11449) on :
East. Posted by Hoosiers51 (Member # 15759) on :
psr1-- It depends if you are talking about Bartonella or BLO.
I had what I am fairly certain was a bartonella die-off, and I did test positive for bartonella henselae through Quest.
I have a history that suggests Bartonella infection, because I became feverish (102.5) while I had a tick still attached, and my LLMD told me that only Bartonella can produce a fever that quickly.
When I took Bactrim DS (I was already on Zithromax I believe...was adding Bactrim to my cocktail), within hours I all of a sudden felt the desire to cry. This herx literally woke me up in my sleep. It was about 3 hours after the first pill.
I felt like I had to cry, so I did, even though nothing was upsetting me and I didn't feel emotionally upset. It felt like something was possessing my body, and I felt fever-ish, hot (didn't take temperature).
I looked in the mirror, and the whites of my eyes were pink..bloodshot, and my eyes were kind of squinty, almost swollen. (wasn't allergic reaction) I also think I felt achey, flu-like.
So for me it was quite noticable. Bactrim ended up helping me a ton.
Some people might have less noticable herxes. But from my experience, if you are killing real Bartonella and not BLO, you may herx within the first couple days, and you may see progress as soon as 2-3 weeks, 6 weeks max.
With Lyme, my herxes seem different, and they are hard to tell from side effects. With Lyme, I'll cry, but it's because I feel emotional, not just crying unexplainably.
Just thought I'd share my two cents in case it helps anyone. I am somewhat repeating stuff I've said on other posts, but people are asking the same questions in multiple places.
Posted by Hoosiers51 (Member # 15759) on :
Okay Derek. Don't know then...I had some people I could have asked if it was West coast.
ps--I'm sorry I'm hijacking this thread with my Bart jibber jabber. My Bart was obviously not drug resistant, so what I said doesn't really apply to the topic of how to treat resistant Bart.
Posted by Hoosiers51 (Member # 15759) on :
Derek,
How is the Banderol working out for you? I think that's what Clarissa took for her Bart and she saw results. I'm considering adding it.
Even though I've had some good results from drugs, I really want to knock it away for good, and also I want to cover the possibility of BLO/multiple strains.
So far all I've tried from Cowden is Enula, but I've been impressed with that product.
Posted by djf2005 (Member # 11449) on :
Banderol has been OK for me. It has helped push me a bit forward, certainly not going to extinguish whatever I have. It's going to subbed for HH soon I think.
Good luck in knocking it out for good, I'll settle for symptom free. The ones for whom this is proving to be resistant are having quite a time, including me.
Ive been on levaquin, doxy, rifampin, and a few others. Rifampin was the most helpful, Bactrim DS may be an option in the future as I have not taken it.
Im trying to beat this naturally because abx are not a good long term solution IMO, but I need relief so we will see. If I have to return to them, I will. Im completing month one of cowden and I need to give it a full 3 months before I can look elsewhere..
Enula is quite effective for some, good for parasitic infections and babesia, etc.
Best
Derek
Posted by CD57 (Member # 11749) on :
Have we heard anymore about this BLO thing? I think there were some Fry posters on here?
I have heard that b. quintana requires gentamicin + Rocephin to cross BBB, also with or followed by doxy. I don't know if anyone knows about BLO yet?
Posted by psr1 (Member # 22957) on :
Thanks Hoosiers51. That was very helpful
Posted by Hoosiers51 (Member # 15759) on :
psr1, you're welcome.
My interpretation of Dr. B's guidelines and things I've read is that BLO generally responds to Levaquin and/or Rifampin, and Bartonella responds to things like Zithromax, Doxy, Bactrim DS, etc. Though Zith and Doxy didn't seem to affect mine much. Zith did something once I added Plaquenil...at that point I saw something. Plaquenil makes Zithromax more effective...there are studies that show this.
Derek,
If you haven't tried Bactrim DS, you really should at some point. A lot of people have said it ended up either giving them some of the most noticable herxes they've ever had, or has given them some of the best improvements out of any drug. "charlie" (who has been using LN for a long time) and Metallic Blue are two that come to my mind.
Charlie is the reason I actually tried it...none of my LLMD's suggested it, so I started it on my own.
Rifampin and Cipro did nothing for me.
CD57,
I am thinking that Dr. B's "BLO" that he writes/speaks about might not be what Fry is seeing. "BLO" is basically something that they can't test for, that gives symptoms similar to Bartonella, that responds to certain drugs.
That's just kind of my theory, that Dr. B's BLO might not be the same as what Fry's finding. I'm not sure what Fry is seeing. BLO seems to be unique to Lyme patients, whereas what Fry is seeing is found in almost anyone with any chronic illness. Big difference.
Posted by djf2005 (Member # 11449) on :
I have added Bactrim DS to the list of possible options once completion of cowden.
A Bactrim based abx regimen is one thing I have not yet tried, so who knows.
I really am not looking for a huge herx, although they always seem to come for me on abx which is sometimes very difficult.
I am DR4+, and detoxing is an issue.
I am concentrating on open my pathways as best I can currently while on cowden so if I return to abx the hope is that it will be easier.
Interesting about your thoughts on the BLO/fry bug difference. Could be so, I only wish that someone would try to do more research on what is effective at treating these pathogens rather than doing tens of thousands of patient tests.
I have not been tested by Fry, and I think I will soon, but even if I do, what then? I've got the mystery bug that no one knows what to do with. It seems of little help, other than getting another positive test which is somewhat beneficial.
It is nice to share information on BLO/bart/mystery bug between us and what has worked for us but even that is making the assumption we have the same things, which itself is unlikely.
Solid testing that identifies the exact pathogen and strain IMO has to be the first step in this mess somehow.
Thanks for the advice and opinion/s, appreciate it. Hang in there everybody
Best
Derek
[ 12-15-2009, 01:24 PM: Message edited by: djf2005 ]
Posted by Mrs. Barthead (Member # 23995) on :
I have been on Cowden herbs forever- limited protocol. They help me. I do not go backwards. I just discovered the Cowden HH as I was going to try Rifampin for Bart, but last time I did add it to my regime, I had either a severe herx or it lowered my clonazepan enough to cause anxiety, because I take a low dose, only .50 at night. I could have tried increasing it, but was afraid it would make me drowsy and incapacitated during the day. This was after about 8 days or so into it.
My LLMD doesn't want me to do the Rifampin, although I have it. He recommended Dr. Z's HH. I just started it and I think I am herxing on just one- 2 tabs a day. I also increased my LDN to 3 mg a day, so not sure what's what, but I do not think it it is the LDN increase. I'm pretty certain a Bart herx.
I may buy Cowden's HH and see what happens as opposed to Zhangs. I always found Dr.Z herbs to be highly potent.
Not sure that I could do 18 caps a day! Oh my. That's quite a bit. Does anyone know if 18 caps of HH was tested for toxicity by Dr. S?
Posted by sparkle7 (Member # 10397) on :
I don't know how you can be confident of the testing & use of abx. From what I have seen, the tests are not accurate & the abx have the same side effects as the symptoms of the illnesses...
Just my 2 cents. I'm not trying to be irritating.
I just came across a presentation by Dr. H (east coast) on the internet where he found the straight, full Cowden protocol to be more effective than other forms of the Cowden protocol with & without abx included.
Maybe I mis-read something?
The other issue I have with statistics of results is that you don't know what the long term results are - unless they have been specified. ie: did the people who improved via a certain treatment stay cured for 6 months, 1 year, 2 years, etc.?
Relapse is pretty common with Lyme & company. I guess I just figure that we may have to treat continually. I've thought about it alot & used medical dowsing... For me, it always comes up that the straight herbs are better than the herbs with abx or abx alone.
If we have to treat continually, herbs seem to be a better solution for me. Less harsh to he system...
Every case is different, though. I'm not against drugs at all. It's just that they do alot of damage as well as killing pathogens. Can our bodies heal with all the damage they create over time?
I haven't tried HH - sorry to diverge from the original question.
Posted by pryorka (Member # 13649) on :
Much better to buy the actual herb from 1stchineseherbs or somewhere else. Then you're getting nearly 20 times the medicine for half the cost.
Posted by Mrs. Barthead (Member # 23995) on :
I don't think that 1stchinese houttunyia is as potent as hepapro's. I even spoke to them about it. 1stchinese is about 1:5 and Hepapro is about 1:9. if they have the same compounds as Hepropro, then you would need to take double. My understanding would be then you would be get about 125 caps then which would be about 3X at half the cost, but what if the herb potency is not the same or there are missing vital components?
if anyone has tried both and can say that they are comparable in the results they gained, please pm me.
Posted by Stacyb (Member # 13084) on :
Alv----had tried both and makes her own and took high doses of this herb. She has not been here in a long time but maybe PM her. I think she also said the potency of the herb is less strong then the HH from Zhang and that she had to take more of the houttunyia but it worked.
Posted by pryorka (Member # 13649) on :
You can either buy the whole herb from 1stchineseherbs or you can buy the 5:1 extract. Both are enormously cheaper than buying anything from nutramedix or hepapro. There's no point in overpaying so much for their stuff. Unless you feel like they are a charity, but if you want to give to charity, buy the herb from somewhere reasonable then donate the difference to ILADS.
Posted by kday (Member # 22234) on :
Ordered HH today per my LLMD's suggestion from HepaPro.
I'm drug/chemically sensitive, so I talked with Dr. Z and he said start with the regular dosage of HH and see how I tolerate it.
Posted by CherylSue (Member # 13077) on :
Any updates on Nutramedix HH? Has it worked for you?
Posted by Sheryl777 (Member # 17804) on :
I bought HH Zhang capsules at drrons.com and it was cheaper than hepapro.
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