What should i add to my protocol? Any suggestions?

[jay185]

Hi all.

I had a test with IGENEX back in december, when i got my results in January i managed to find i had a 39 IND and 41 IND for IGM. My IGG was 41++ and 58+.

It came to my attention from help from other forums that i do have Lyme's due to band 39.

One doctor i spoke to told me to use colloidal silver with artemisia along with a biobuster along with prodovite, fulvic acid and 5htp/gaba. I saw no difference after 3 months.

Then i went to another forum that mentioned the importance of getting a LLMD and trying banderol with cats claw. I am now on Bunher's protocol for the Lyme disease up to 12 drops banderol a day; 2capsx4banderol.

I am still not feeling any real herxes or aware i am even getting better, i am getting worsening crepitus and fatigue, now i am so angry, anxious and depressed that my brain has simply had it.

For detox i am on sarpasillia and red root. I am taking olive leaf, B6(some other stuff in it) and ashwagwanda.

What is odd is that when i first started taking ashwagwanda (spelling) it worked fantastic, my muscles felt amazing, it no longer does anything for me anymore. Why is that? i have no idea.

with that said what do i need to do? Am i missing something? I was reading Dr Burrascano's work, he mentions NT-Factor, alpha lipoic acid, co-Q10 and probiotics which would be my next bet for good bacteria in my body.

I really dont know what to do other than upping the drops of banderol, eleuthro and japanese knotweed as well as the cats claw capsules. Yet not difference.

Any suggestions on which i should probably consider next? I was thinking probiotics.

Thanks for reading and any help.

 

[ahmo]

You can go to the search box at the top right of this page, and put Lyme into search box. Click not this forum only. And thread titles. You'll be able to see many Lyme conversations. This is the first of the list that came up for me about treatment. There were also many about research, etc. Good luck.

 

[Dufresne]

Buhner claims ashwaganda is the best herb for enhancing cellular immunity. I've received considerable relief when hitting an intracellular infection from a new angle. Unfortunately it's always short-lived. Perhaps something similar happened when you took the ashwaganda.

Are you averse to pharmaceutical antibiotics? If so, you might want to consider garlic. I think it's one of the best things to take for Lyme.

 

[jay185]

@ahmo. I will have a look around and see what i can learn, thank you.

@Dufresne. I have to say i did not know he said that, back when i first took it was amazing, it loosened up all my tight and sore muscles in my back. Now it is almost like it passes through me like water. At the first i noticed if i took a break then re-took it then it would still work. Now after a big break from using there is no difference. I am not sure why that is or if the Lyme has become immune to it or even feeds on it, hard for me to work out.

Regarding pharma antibiotics i dont mind them, i was told when i met an alternative doctor type that i should leave antibiotics as a last shot and see how i go with Colloidal silver and a biofilm buster, later i was not really experiencing herxes and simply getting worse after 3 months (when i say worse i dont mean herxes simply like my bones and joints were degenerating). Nothing seemed to be happening. I then took a break from CS for 1 month to try banderol and cats claw along with the other stuff mentioned to take alongside it as it was recommended on another forum.

I cant say i have noticed any real herx or real progression toward being better.

i am ok with taking pharma antibiotics but my situation is a little complicated, i saw a LLMD here in the UK who wanted to put me on metronindazole and use a rife machine, this however meant travelling a few hours to see her every 2 weeks and costing at least 100 dollars each time plus medication costs. I simply cannot afford that, i am unlucky that even though i live in a big city there are no Lyme doctors nearer, then i would have no problem, i dont trust myself getting on trains and buses completely but at one point was tempted to try until a recent issue with being able to think properly, i am very fragile. Currently i need to check if my liver can handle antibiotics, i am awaiting my results for that.

Unless i can find some way of getting money i will not be traveling anywhere for help so i will apply for support.

I will try the garlic, i have a lot of it, thanks for suggestion, is that for killing the Lyme or detox?

Cheers

 

[Dufresne]

The Cowden herbs did nothing for me, neither did colloidal silver, and most antibiotics don't produce much of a herx.

Garlic and IV Ancef are the only killers that have caused real spirochete die-off. Generally, though, my immune system does a pretty good job at looking after things outside the cell. For instance if I've consumed lots of sugar I'll notice a herx a day or so after getting back on my diet. If I eat garlic the herx is at least twice as bad.

I've noticed the same thing with immune modulators. Incredible results when I start them that then fizzle over time. But I think this suggests my main problem is a deficiency in cellular immunity which permits bugs to continue irritating my system, perpetuating disease.

Rotating immune modulators might be one way to go. But I've found the best way to consistently improve immune balance and energy these days is a less acidifying diet. I and many others have found that a more acidifying diet turns up humoral immunity, therefore herxes can be eased with alkalization. What I've discovered is that a less acidifying diet tips immunity back toward the cell.

Basically I cut the sugar and carbs way down and stay away from red meat. I also don't consume too much protein; maybe a couple chicken breasts worth per day.

 

[jay185]

Hi Dufresne, thank you for dropping by.

Any idea why the Cowden herbs did not work for you? Do you think it is because you have been chronic too long or just that some people need to just find the right concoction?

I have noticed on odd occasions i had something that may be a herx but i was not certain of it, for example 15 seconds of quick sweating that came out of no where. I remember vividly having that on a full moon night when i took banderol + cats claw +colloidal. However before doing that again i just wanted to see if cats claw+banderol would work on its own.

The thing that worried me was that during that so possible herx i could smell ammonia around my nose, i could not tell whether that is normal or something sinister.

What is your back story? How long have you been trying to kill the Lyme? At the very least i am glad you are now taking something that does work for you. I think i will start adding garlic to my food.

I have been on the ketogenic most of the time and minimized carbs as much as possible also. Yesterday i had a day off the diet with a big dinner that had quite a few carbs and a dessert, this morning i feel really weak.

Rotating immune modulators might be one way to go. But I've found the best way to consistently improve immune balance and energy these days is a less acidifying diet.
Thanks for the suggestions. So less acidic PH. I dont think there is much i take that is acidic except for apples and bananas.

Basically I cut the sugar and carbs way down and stay away from red meat. I also don't consume too much protein; maybe a couple chicken breasts worth per day.
Is there a reason to not eat much protein? I have so far stuck to seafood, salad, avocado, chicken, eggs, mushroom, some fruit, sometimes bacon, spinach, sprouts and sweet potato.

I have noticed my crepitus improves a little on the ketogenic diet.

Thank you

 

[Dufresne]

Not absolutely sure why Cowden's herbs don't seem to do much of anything for me. He certainly doesn't have anything effective for babesia, which is my main problem. However concerning borrelia, it could be that only spirochetal die-off produces a herx. If borrelia can shed its cell wall and change in various ways so as to better hide from the immune system, perhaps these same changes also prevent rapid killing and/or the release of the same inflammatory debris as spirochetes. Syphilis is one of the other bacteria that produce a herx and of course they're also spirochetes. So this might support the idea that it's specifically this form that produces the classical herx.

I suspect the real problem with chronic Lyme, particularly in ME/CFS, is the intracellular form. I believe co-infection is the norm and if you think about it, all the co-infections are cellular pathogens. These critters no doubt have mechanisms that compromise cellular immunity. I'm quite sure my babesia releases some immune irritant that depletes my energy, mainly through oxidizing my system. As this happens my humoral immunity is actually cranked up. This is why I get die-off without antibiotics a day after a sugar binge. And the only things to worsen this herx are bactericidal antibiotics. So it's my impression cat's claw is not bactericidal. Moreover this pathogen-induced immune modulation opens the door for borrelia to go into the cell.

So my strategy is to focus everything on babesia and as I improve borrelia will die-off naturally. The diet I mentioned is one that betters redox status, which not only makes one who's oxidized feel better but also improves cellular immunity.

I think the ketogenic diet is pretty good for Lyme but I've a tough time maintaining body weight on it. Also after many years of paleo eating I've discovered I do better with less protein. And better still with the less acidifying forms of it. There are a number of LLMD's who believe a diet too high in protein is counterproductive in the disease. This seems to be the case with me. I'm currently experimenting with the FODMAPS diet.

I've been sick a long time. Developed PEM in 2006. Found out I've Lyme and babesia in 2011 but couldn't start treating until 2013. I've learned a fair bit about how to treat my condition since then. I think I've most of the elements in place. What I'd really like to do now is beef up my immune system. Trying a few things for that.

 

[Valentijn]

Not absolutely sure why Cowden's herbs don't seem to do much of anything for me.

The herbal protocols have only been studied and shown effective in vitro in petri dishes. They have never been researched in the human body, or any such research has not been published.

Unfortunately a lot of things look effective in petri dishes which have no effect in human beings.

 

[Dufresne]

The herbal protocols have only been studied and shown effective in vitro in petri dishes. They have never been researched in the human body, or any such research has not been published.

Unfortunately a lot of things look effective in petri dishes which have no effect in human beings.

Yeah, I agree. But I think there are too many anecdotal reports of Lymies herxing with cat's claw to believe there's nothing to it. And although it doesn't have GRAS (generally recognized as safe) status, there's probably not much risk in trying it.

 

[Valentijn]

Yeah, I agree. But I think there are too many anecdotal reports of Lymies herxing with cat's claw to believe there's nothing to it.

My concern with the self-reports of "herxing" is that people use the term very broadly, to include many symptoms which are not part of a Jarisch-Herxheimer reaction, and are even known side-effects of the medication or herb

 

[valentinelynx]

My concern with the self-reports of "herxing" is that people use the term very broadly, to include many symptoms which are not part of a Jarisch-Herxheimer reaction, and are even known side-effects of the medication or herb

I agree. Very skeptical of "herxes" with Rife machines. Really don't believe a neon light bulb will help. There, I've said it, so shoot me...

 

[Dufresne]

Very true. I admit I've mistaken a herx or two in my day. It goes with the territory.

As for rifing, I never got anything but serious irritation of my electrical hypersensitivity from it. The thing is I feel obliged to try everything that seems even remotely plausible. After all, how plausible does electrical hypersensitivity sound? How about chemical sensitivities? Yet they're my reality. I guess I figure if this disease doesn't play by the rules, then neither will I.

 

[jay185]

Hi all. I wanted to take some time out for a bit and then come back with any findings.

Not to be the bearer of grotesque visual images but when i started Bunher's protocol i noticed stuff in my stool at first so i do wonder what that may have been. It never looked like anything i had eaten.

The good news is that my recent liver function show ALT and alkaline phosphatase have gone WAY DOWN and i REALLY mean way down, to the point of being healthy normal levels.

I am not sure if that is a good thing, it surely is but at the same has that happened due to losing 1 stone (surely it cant be that alone)? Or has it happened because of the protocol I am doing even though i dont feel i have recovered at all? Anyone have any idea on why it might have gone down? Is it possible to still have Lyme affecting the body but moving away from the Liver to other organs, is that perhaps why my Liver is working again normally?

Shouldn't my liver levels be high on this protocol?

I am curious also if anyone knows the answer to this: Are Vitamin D levels related/pre-cursor to Liver enzyme levels or other way around or something?

I dont know if there is still inflammation in my liver as the last time i went for ultrascan and MRI was a good year and half ago. Is liver disease cured if the levels go normal or does this mean that there will always be scarring left over?

@Dufresne
Thanks for sharing, i have taken a lot on board of what you said. I would not say i have had any clear herx except for watery eyes and sneezes every now and then but I do wake up in the morning feeling really ill with back issues and pure weakness, any idea what that may mean in my case? My body becomes ill while i am sleeping then feels a tad better as the day goes on. I really dont get that. Crepitus is also worse first thing in the morning.

I noticed since getting into ketogenic diet some weird feelings such as sharpness in lymph nodes at random moments, i also noticed less crepitus. However this diet is very difficult without protein. Interesting you mention doing better with less protein. I have had no problem ridding bread/dairy from the diet, milk i drink rarely, bread i quit altogether... sugar however has been difficult, at the moment i am trying to space sugary stuff over days.

I will keep going with the protocol until i reach 3x10 drops of banderol with 4 cats claw capsules per interval (currently i am 3x6 and 2 caps per interval). When i get to the maximum i will have an idea where this is going.

I am next thinking of upping detox methods to see if there is a difference.

I have considered just asking the LLMD to give me the antiobiotics metrinodozale and ask if i can skip the rife machine but i have a funny feeling she wont allow it.

Regarding the redox status and bactericidal thing you mentioned can you explain more. I notice colloidal silver may have more effect than cats claw at times, so does that mean CS is in fact more a bactericidal approach? I notice i get something like a herx when i use CS, especially when around the full moon.

Am open to further suggestions if you have any, thanks.