Lyme Disease Support Group

Just wondering how many are having success with naturals, and how many are having success with antibiotics.

Reading these forums, it seems that not all are responding to antibiotics, other than having reactions to the drugs themselves. Same goes for herbals - some do seem to be having some success with those, and for some they don't seem to work. I know that compliance and choice of herbals plays a part here, but assuming that you stay in compliance with either protocol, is there really a significant difference in the outcomes?

I'm about 2 weeks into the Cowden condensed protocol, which means I'm just about up to the maximum dosage of Samento (30 drops). So far, I've had minimal reactions, which I'm assuming is at least partly due to the companion herbs included in the protocol that are supposed to ease the detox. I'm also eating fairly cleanly (limited junk or processed foods) and taking some homeopathics for specific symptoms.

Symptom reduction is minimal so far, but there's definitely been some effect. Mostly I have more energy and less grouchiness, I'm sleeping better, and I am noticing that my right leg/foot seem less affected by the numbness/weakness as well. Slow start, but at least something!

For those who are on naturals, which protocols are you on? And for those on antibiotics, have you found ways to reduce the toxic side effects? Mostly what I see on this forum are complaints about the antibiotics herx, but not ways to lessen the pain.

Thanks!

Linda

Linda,

You've done a good job of summing it all up.

Basically, from what I can tell, it is a total crap shoot as to what works and what doesn't...

I know that isn't very comforting but even the best LLMDs have to shrug their shoulders sometimes because the truth is...No ONE knows! We need more research.!

As far as the pain goes...it has always been there for me with very little relief. If one set of pains subside, I'll get it somewhere else maybe even a different kind of pain all together.

I only know of people getting rid of the pains once they've reached remission...and even then I get the impression that the pain is mostly gone but still bothersome from time to time.

What does this all mean? I don't know...not sure anyone does...

We desparately need more research...which is why everyone should be making attempts to educate everyone they can about the realities of Lyme as we know it.

Again, it is hugely important to raise awareness about the bill in Congress, HR1179 because it asks for $100 million for LD research, education and prevention.

We must let ALL, local and federal, legislators know what is lurking in their communities and the major health crisis it poses to each and every American family and families all over the world!

Sorry for the rant...but when I get frustrated, I find it more helpful to use that energy towards a positive end rather than being all depressed about it.

Im going to say this but if anyone is offended dont take it that way. I do not see any purpose in antibiotics conventional ones because when you take one it creates a new host of problems. As for the natural antibiotic which doesnt cause a host of problems because its natural to the body and can be easily assimulated into ones system. I have achieved what everyone is calling remission/cure from lyme and I didnt take one antibiotic to do it. I gave my body a fighting chance and corrected the problems created by the lyme itself. I would just tell everyone it is in my OPINION that antibiotics have their place but only as a last resort. As for pain I would highly recommend to those that are experiencing it to seriously look at the essential oils. When I use to have pain, I would have rubbed a combination of 10 different oils into the area where the pain was. Then I took a very hot towel and placed it over the same area causing the blood to come to the top of the skin. Dont get me wrong my skin felt like it was on fire for about 10 minutes but afterwards there would be no more pain. This kills off any bacteria in the area and takes the pain away. Hope this helps.

Steelers

Steelers-I'd be super interested in knowing what you did, down to the "t"...I quite conventional treatment as you know a few months ago, my body was just needing a break. and I'm kinda lingerin on a frew things here and there. Basically I'm not "allowed" to be sick, dn't have the support at home. I have increadibly undescribable pain, I know I'm an extreme case there are many underlying issues as you might already know from my profile. But I'm trying to research some natrual stuff for the summer here. if you could send me a pm I would so apreciate it

as for the original poster... basically when it comes to lyme, my doc was VERY honest and up front from the begining, he said treating lyme and company (I say company because I"m not just talking co infections but including mycoplasma, parasites, activated viruses etc etc) is a crap shoot.

when you think about it there are over 200 strains of LYME alone, then add in all the co infections and all thier different strains and then everything else...lots to deal with.

so sometimes it can take a while before you hit the right drug for the strains you have. They recomend giving each drug, weather you choose to do mono therapy or multitherapy at LEAST 90 days, see how it's going from there, and then they will usually switch out one drug at a time and try a new one. until you hit that "magic" one that helps.

as far as helping with herxing and toxic overload detoxing is a must. simplest thing is to drink plenty of water...at least half your weight in ounces a day. some people start their day with warm/hot water with lemon, gets things moving. also a warm bath with 2 cups of epsom salt is good. my FAV is activated charcaol, but it absorbs not only toxins but everything, it's awesome I've seen it bring people right out of a herx...not ALL the time, but enough to toot a horn or horray...but you have to make sure you take it at least 2 hours after taking any meds or supps and wait 2 horus after taking it to take anything else, becuase like I said it will absorb meds and supps too.

also you should be on a GOOD probiotic, not just acidophilis. healthfood stores carry good stuff, you can also check out www.iherb.com I've used them and many others have they are reliable and good prices. u want a probiotic with severeal strains of good bacteria and billions of them.

when it comes to lyme treatment EVERYONE is different. I dont think I've talked to two people who have gotten well with the exact same protocol. trial and error basically. it sounds like you're making progress on what you're doing so that is a good sign. stick it out for a while , see what happens, then you might want to change things up ... not sure if you are using carnivora from nutramedix, but it's suppibly awesome. but wait until you are comfortable to start.

as far as complaints on pain and herxing, like I said above detoxing can help with that. I have a thread in fact section titled something like "detox baths and other detox ideas" check it out.

not sure if you know, and I may be repeating stuff here, but a herx is in simple terms a die off of bacteria, creating kinda toxic overload...some argue that your body can detox on it's own thru sweat, but I think it certaily can't hurt to help it along.

infared saunas are good too if you can get access to one of those, sometimes gyms have them.

let me know if theres anyting I can do for you. usually easiest to PM me, I'm usually there finding docs for people

warmest regards

j

Steelers: Ihave to agree with you, when I was on abx's I felt awful after 6-8 months of them, I said enough is enough, it took my body around 2 months from that point to start to feel good again, and once I started to feel good I went the natural route and ate, drank, etc well....I'm like you, doing so good at the moment...

I love clove oil, I use that one a lot for pain....had a bad tooth a few days ago, put some on with olive oil and bang, pain was gone within 5 minutes...I love the oils....I have to find a post from Fluffy she sent me on all the oils and what they do, that might help you Jaime...let me go look for it...

Julie

I'm really not concerned about pain management - what I have is not so severe that I cannot tolerate it. Seems it is mostly caused by the muscle spasms that are the leftovers from the myelitis at T7-T9, which then tweaks out my whole back. I spent a bundle on chiropractic care already for this over the last 2 years, and it really doesn't help - seems the underlying condition needs to be resolved first. While it would be great to have my back pain-free, I'm not disabled from it, although some days are better/worse than others.

More of a concern to me is getting this lyme/co under control so my numbness will go away! Makes it hard to walk around without holding on to a shopping cart or similar, and to be too far from the bathroom some days.

As for herxing, seems some have the philosophy that you're not "healing" unless you feel like crap from the herxes. I don't buy into that philosphy, and I wonder if the "herxes" are actually reactions to the toxins in the drugs rather than the die-off itself. With the Cowden I'm not having herxes/pain (or at least no more pain than before), but then there's the question as to whether Cowden is enough, or whether it needs to be used in conjunction with other treatments.

I'm going to check out a local integrative doctor today. She says she treats Lyme, so it will be interesting to see what approach she recommends. Still wavering on whether to do the spinal tap with the neurologist this week... he's not real lyme-friendly, but does want to rule out other possibles. Not that he's denying lyme, but he thinks that all the "hype" is more money-making than actual science/medicine.

regarding herxing, not everyone herxes bad. and if you're doing cowden that means, well I am assuming here...that you are taking burber? that also helps detox and make the herxes more tollerable.

some herx hard, others dont, both on conventional and natural therapies.... although I will say this...herxing is a bit of a dying theory in that, they used to think the harder the herx the better and to push thru it.... now they have learned you can actually die from a herx, so if it gets too hard, back off meds a bit and do some detoxing

Grr..I wont even address my thoughts about the neurologist...

Linda...

I was on abx for 12 years - straight, and then a few years gap, then again on and off for 2 years...

Abx do have a place in treatment. For example, right now I have added Biaxin into my natural protocol, because I had not choice but to take steroids in order to get over an infection...

It was nice that the steroids killed the pain for a few days, but I began an immediate landslide around the 5th day (i took them for 3 days)...I had more then doubled my natural treatment...

And it just wasnt aggressive enough to handle the viral infection that I had...the doc gave me a Z-pack...and about a week after treatment, as I was declining - some very awesome people had helped me out by sending me abx - I couldnt push the dr for it...

The Biaxin did slow the decline - which was a direct result from the steroids, and a weakened immune system...

I am ALMOST back to where I was before I got sick. So i plan to stay on the abx for 3 months...just because I do not know how much the steroids activated...

Aggressive abx treatment can in many cases be life saving...and altho I never reached remission on abx, I know that it did enable me enough aide to live a relatively normal life throughout my teens and twenty's...

It wasnt until I began adding better diet, more water, dropping the bad foods...and got on a whole food supplement, that I was really heading toward remission...but lost my job and $$ so I had to stop everything...

The only other time I was close to remission - was in the beginning of my relationship with my hubby...and much of my progress was due to my happiness - but I crashed BIG TIME - once the disease caught up with me...

By the time we got here to CO, I was taken to an ND or whatever he called himself, and the one thing he got right,was the fact that my adrenals were not producing anything. So I started hormone therapy - he made me some tinctures and natural supplements - and a month later I was pregnant with #4...

OK flash forward to this past xmas - my family doc, who is not an LLMD, after all of our conversations about me, and the research that she did on her own...she came to the conclusion, that I needed to try all natural - and I wanted to but was afraid to go forward without abx...

My progress was pretty amazing the first month and a half - I was on Samento and Cumanda...but Samento only works for short periods for me...So I switched to Spiro - which if I took too much - I did only once - the herxing whooped my butt!

Bottom line - you have to find what works best for you. When going conventional, this becomes hard, because few doctors are willing to experiment with different abx every couple of months...

Naturals, altho we shouldnt just make up our own protocols, sometimes we have to...but the flexibility for an individual and even for the doctor is much more...so we can research and find the different things that work for us as individuals...

Many here use nutrimedix products - I personally will be switching completely over to Rain Tree Nutrional products...they just seem to work better for me...

As for pain...My nerve pain is usually controlled by Lyrica - takes care of most of the numbness, tingling, burning, and some of the shocks. But on a bad day - there is nothing that I have - nothing at all that will conquer that pain. I have to suffer through it...

You may want to look into Kratom - I have been using that with much success...its totally legal, and when taken appropriately, it can be effective with pain management - BUT again it doesnt work for everyone.

My best bit of advise - is to learn to accept what we have - we can hate it, resent it, whatever, but if we dont accept it - and fight against it - fight against the pain - the pain will be worse.

Its a long rough road...but we can all get their - one way or another...

Christine

Jaime, yes, the protocol includes burbur and parsley, so no bad reactions for me at this point.

Christine, the lyrica takes away numbness? Thought it was only supposed to take away pain? Tried gabapentin for a short while with no results, but wondering if I didn't give it a long enough try.

Just saw an integrative doctor today, so will include her in the loop with all of this. She thinks the lyme triggered something else (possible guilain-barre) and thus wants to be sure we treat that as well. She also ultrasounded my legs to check for blood flow, and found that to be reduced, which could also be causing symptoms. Was given a prescription for medication that is supposed to help blood flow to the legs, and is slow-acting so will take a while to show results. Meanwhile, the spinal tap is still on for Thursday... ugh.

jaime when I get home I will send you a pm telling you everything I took for this lyme. I want you to know that doing the treatment will cause you to have some pain.

Steelers