Borrelia
Hi dpd,I'm trying to study up on and get info on the various LLMD's. Looks like I'll have one shot at getting well and I want to do it right the first time. I don't want to waste time & $$$ just to have to go through the whole process again.
WHen you started seeing Dr. K, how long was the initial visit, how many follow-up visits were required. Was he willing to work through phone consults? What was the cost for initial visit & follow-ups?
Incidentally, I'm finding a lot of people going the antibx route are having to change the combo of pills 3,4,5 even 10 times to get it right. That's with all the tests and when LLMD's know what they're dealing with. Frankly, the LLMD's are saying there is much we have to learn about borrelia. We've got more questions right not than answers.
Are you looking for treatment in Germany? Wonder what the medical consensus is like there for Borrelia.
Thanks,
Hi Pace,
>> I'm trying to study up on and get info on the various LLMD's. Looks like I'll have one shot at getting well and I want to do it right the first time. I don't want to waste time & $$$ just to have to go through the whole process again.
What exactly do you mean by "taking one shot?" I'm not sure this is the correct way at looking at beating lyme. ANY TREATMENT FOR LONG-TERM CHRONIC LYME THAT I'VE SEEN TAKES A VERY LONG, MULTI-FASCETED APPROACH. It is a process one goes through, pealing off layers of infections, nutritional issues, toxicity, etc.
Note that the MANY infections require mulitple modalities themselves to erradicate. Babesia might be the worst. One has to be VERY methodical in dealing with this bug, and it's best to educate yourself well about how to deal with it. I unfortunately started treating it with long-term artemisinin, and my babs developed resistance. I now wish I used a 3 day mega-pulse monthly approach, combined with 3 days of neem, followed by 3 days of quassia, followed by perhaps quinilones, combined with colloidal silver, garlic, AND microcurrent devices. I suspect the combination of medrol and Zithro, perhaps short term pulsed approaches can be helpful here, as well as higher power rife machines.
Whatever the case, treating babesia AND borrelia early, combined with gut parasites including worms, and viruses is probably a good initial plan of attack.
I use mega-doses of seagate/gaia olive leaf, garlic, AND colloidal silver for the viruses. I've also taken quite a bit of lysine, but I worry about taking it daily for extremely long periods of time. The vitamin C is also good for the viruses, but vit C IV's might be in order here to really wipe
them out. At any rate, I hope you see this is process, and not something that can happen in "one shot.">> WHen you started seeing Dr. K, how long was the initial visit, how many follow-up visits were required. Was he willing to work through phone consults? What was the cost for initial visit & follow-ups?
Well, the initial visit was lasted 4 days, including 2 office visits. This was pretty expensive. He charges $6/minute and usually takes 60-70 minutes with you. He also can get pretty pricey with the supps quite quickly. I will say though that for the most part the supps were by far the most effective that any doc has every prescribed.
With that said, note that he admits s/c is still one of the MOST effective treatment components he's seen to date, and that's pretty damn affordable compared to all the other stuff.
Regarding cost, it was probably around $1500, but we have really good insurance so we got some of it paid for. Unfortunately, the insurance is staring to bail on us, so that's going to become a hassle.
One word of caution, I had a 9 month wait to see him, and that was well over a year ago. I heard a patient in his office claim that the waiting list is now well over 18 months.
Regarding follow-ups, I see him approximately once every 3 months. I presume I'lll have to see him for at least a couple more years as I progress through the VERY DETAILED process he outlines in his paper, including the heavy metal detox and desentization via urine therapy during the final phase.>> Incidentally, I'm finding a lot of people going the antibx route are having to change the combo of pills 3,4,5 even 10 times to get it right.
Yep, you have to treat multiple tick-borne bugs usually, some of wich are capable of developing resistances. Further, the borrelia can take on many forms, each of which requires different bugs. Even the spirochete itself as amazing ability to adapt, so the most advanced abx approaches entail various series of combinations of abx.
Treating naturally is very similar. I'm taking over 10 antimicrobial herbs now for multiple infections, and I've taken several more in the past that I've dropped. Salt/C is THE BIGGEST BANG FOR THE BUCK HERE, BY FAR.
>> That's with all the tests and when LLMD's know what they're dealing with. Frankly, the LLMD's are saying there is much we have to learn about borrelia. We've got more questions right not than answers.
NO doubt about it, noone seems to have the difinitive answer for chronic lyme... an answer that's well-packaged and works for everyone.
>> Are you looking for treatment in Germany? Wonder what the medical consensus is like there for Borrelia.
I going to undergo the experimental tonsil therapy that Dr. K discusses in his paper.
Good Luck Pace, and please go slowly with the salt/c. AND do consider taking a ton of GOOD QUALITY chlorella... B and I have found that either sun chlorella or biopure chlorella (CGF-free) from http://www.biopureus.com works well.
If the herxes get really bad perhaps adding in some charcoal would be helpful, but note that will absorb other meds so use wisely here... i.e. not taken near other meds unless in the case of an emergency.
Pace,
Hi. I am interested in why you are not starting a low dose of c-salt, now, even without an LLMD.
It seems to me that anything that might push ack the lyme, even a little, in your case, would e wise... Any treatment takes years and years to work, so the sooner you start something the etter.
I know the herx can e awful ut if you take quality chlorella aout 30-60 minutes efore c-salt, this can HELP SO MUCH with the herxes. I would not e ale to do it without the help of chlorella.
I wish I had een ale to e on a treatment like this years ago and the sooner you start, the etter!
Hi b,
Funny you should ask today because I just started the Salt/C this a.m. ! I did O.K., no herx (used 1/4tsp real salt with 1,000mg Vit. C). I know I probably had too much Vit. C, but I'm also taking it for a cold I'm battling.
My LLMD told me NOT to do the Salt/C and I have no idea why, so, I've just made up my mind to do it.
Thanks for the advice on the chlorella. Anything to make the herxes better.
Did you say you had done the antibiotics at one point? What was your experience? Were they IV or oral? Knowing how bad the candida is and how futile it is to get help from doctors for it, the abx really scare me. I think some LLMD's just don't get how bad Candida is. When you think of the gut beiing our first line of defense with immune cells, hormones and other important stuff, it makes me shudder that the abx could wipe all of that out. I think those of us with Candida & Lyme have a double-edged sword to contend with, don't you?
hey pace,
good to hear that you are using c-salt. efore i forget can you not use my name? i would rather just e known as .
so yes i used ax, 2-3 kinds over 5 months and it helped ut wow i had horrile yeast and fogginess ecause of it...
the prolem is staying on a treatment for year on something you can handle and ax is not an ideal candidate for me... it really can rock you world, in a horrile ways. so if there are other treatments, like c-salt, and rifing, these are the ways to go... dpd i think is doing the est alternative protocol and if i had more time and energy i would do everything he is doing. i am doing a lot of it ut not all ut am keeping some other options open like atlas one readjustement, the tonsil therapy he is doing etc.
so aout the chlorella, i find taking it in HIGH HIGH doses 1/2 to 1 hrs BEFORE c-salt helps a lot.
i also finally found a rand and type that works and is not super expensive:
http://www.mountainrosehers.com/learn/chlorella.php
And like dpd urges GO SLOW... VERY.. I stayed at 3-4 grams for 4 months! Unreal, huh? Now I take etween 8-12 grams depending on some other things I take.
Let us know how it goes...
Hi b,
Sorry about using your name. I had started to write "b" but then I though, "ya know, B_____ is such a beautiful name that I will write it out." I won't use it anymore online. I understand.
I appreciate the link for chlorella. Anything to save a few dollars in this super expensive treatment program helps.
The thing you mentioned about the abx are definitely concerns of mine. Did you take any AF while on the abx? I wonder if LLMD's will prescribe both LONG term? They might prescribe the AF short term, but as you know, that just doesn't cut it.
Did you get the candida under control now that your off the abx? Sorry if you answered, I've got candida/lyme brain fog! :-0
Pace
Pace, don't you have a heart condition of some kind?
I don't know much about the range of heart problems, but mostly I have heard you should watch your salt intake very closely with many types of them.
One of the things I know salt does is to increase water retention in the body considerably, which can place a strain on the heart, having to pump all that fluid around.
It's also an electrolyte, involved with other electrolytes in the processes governing heart rhythms, blood pressure and so on.
Things to look at carefully with a competent MD, I think.
Jed,
You're right, plus I've also developed a kidney problem, too and have fluid on my lungs--I know, I know, it's a mess.
The problem is finding the right dr.--like we've talked about before! ;-)
I'll be careful.
Pace,
>> Funny you should ask today because I just started the Salt/C this a.m. ! I did O.K., no herx (used 1/4tsp real salt with 1,000mg Vit. C). I know I probably had too much Vit. C, but I'm also taking it for a cold I'm battling.
I'D GO VERY SLOW WITH THIS PACE. It's probably too early to feel a herx... often times when folks start they don't get one for days or weeks. In fact you may find that you feel WONDERFUL for a while, in which case there's a tendency to believe you can ramp up quickly. Then a herx from hell sets in and many folks get scared off from s/c entirely at this point.
My strategy was to go at least A WEEK at herx-increase-free without increasing the dose. You have to be very disciplined with this protocol. I personally would NOT increase this particular dose, again, for at least a week, and I wouldn't be surprised if you have to decrease over the next few weeks.
Recall, lyme dieoff can cause heart palps, so given your experience I'd be very careful. I take eclectic freeze-dred hawthorne when I feel heart palps.
I'm going to beat this to death here... GO very slow here, and watch monitor your heart. Obviously, if things get scary you'll want to keep in touch with the doc.
Also, I've been taking Gerson Potassium Compound salts THE ENTIRE TIME I've been on salt/c in order to rebalance potassium loss due to the increased sodium intake.
Please go slowly pace... the initial s/c herxes can come on quick and fast, and if you ramp up too quickly you'll not like the subsequent herxes.
Hi dpd,>>>>you may find that you feel WONDERFUL for a while, in which case there's a tendency to believe you can ramp up quickly. Then a herx from hell sets in and many folks get scared off from s/c entirely at this point.>>>
The first time I tried Salt/C (over a year ago) I mistakenly took 1 teaspoon Salt & 1000 mg C. Boy, oh boy, did I ever get dieoff and a major herx!
>>> You have to be very disciplined with this protocol. I personally would NOT increase this particular dose, again, for at least a week, and I wouldn't be surprised if you have to decrease over the next few weeks.>>>
DECREASE? Did I read that right? So even though I didn't herx today, it may happen sometime in the next few days? & Then I may have to decrease?
Because of this cold, I'm taking about 4000mg C per day spread out. I've been doing that for about 6 days now with a break of 2 days inbetween.
>>>>>Recall, lyme dieoff can cause heart palps, so given your experience I'd be very careful. I take eclectic freeze-dred hawthorne when I feel heart palps.>>>>
I have hawthorne tea somewhere in the house. Think it would work? I get heart palps anyway off and on. Sometimes free of them for days and then they return.
>>>I'm going to beat this to death here... GO very slow here, and watch monitor your heart. Obviously, if things get scary you'll want to keep in touch with the doc.<<<<
I will go slowly. Think I will do the Salt/C 1x today, 2x tomorrow and if all is well 3x afterwards. If I have to, should I ramp down or abate for a few days?
>>>Also, I've been taking Gerson Potassium Compound salts THE ENTIRE TIME I've been on salt/c in order to rebalance potassium loss due to the increased sodium intake.<<<
When my computer crashed, I lost that link. Would you post it for me if you have it?
>>>Please go slowly ... the initial s/c herxes can come on quick and fast, and if you ramp up too quickly you'll not like the subsequent herxes.<<<
I'll be careful. Any info on how Dr. K arranges/handles his consults/appts?
Thanks,
Pace
Hi Pace,
I understand completely your concerns about waisting money and time. The best bet is to get as well networked as possible and talk to actual patients. feedback from patients will help tremendously in finding a particular doctor.
one important note about dr. k, he actually recommends you have another doctor for the lyme specifically and see him as an "advisor" to that other practice. i actually agree with. i see another llmd in ca that runs a lot of routine blood work etc. this arrangement has worked out well for me to be honest. something to think about. i'm not sure dr. k should be your "primary" llmd.>> >>>>you may find that you feel WONDERFUL for a while, in which case there's a tendency to believe you can ramp up quickly. Then a herx from hell sets in and many folks get scared off from s/c entirely at this point.>>>
>> The first time I tried Salt/C (over a year ago) I mistakenly took 1 teaspoon Salt & 1000 mg C. Boy, oh boy, did I ever get dieoff and a major herx!
yes, i can imagine!
>> >>> You have to be very disciplined with this protocol. I personally would NOT increase this particular dose, again, for at least a week, and I wouldn't be surprised if you have to decrease over the next few weeks.>>>
>> DECREASE? Did I read that right? So even though I didn't herx today, it may happen sometime in the next few days? & Then I may have to decrease?
yes, i would not take any more than 1 dose daily at the 0.25 ts/1g level. See how that goes for a week. Recall, your not in a race (pace, not race is lyme strategies motto), particularly given your heart issues. i'd recommend just going very slowly and methodically, easing into any herxes, and stay in touch with the doc to make sure your heart is responding ok.
i realize this sounds like a SMALL amount of s/c, but something very magical happens when you take them together. frankly i could take HUGE amounts of vitamin c without the salt and never noticed a thing. however, even before i knew about s/c i did notice that very small amounts of vitamin c (perhaps even that found in the juice of a lemon) taken daily with 1 ts real salt generated a herx. it seems that the amount of salt is perhaps more important than the amount of vitamin c here.
>> Because of this cold, I'm taking about 4000mg C per day spread out. I've been doing that for about 6 days now with a break of 2 days inbetween.
Again, when you combine salt and c, something mysterious happens.
>> >>>>>Recall, lyme dieoff can cause heart palps, so given your experience I'd be very careful. I take eclectic freeze-dred hawthorne when I feel heart palps.>>>>
>> I have hawthorne tea somewhere in the house. Think it would work? I get heart palps anyway off and on. Sometimes free of them for days and then they return.
it may... you might want to have some caps on hand too, although working with your doctor with heart issues here is best.
>> >>>I'm going to beat this to death here... GO very slow here, and watch monitor your heart. Obviously, if things get scary you'll want to keep in touch with the doc.<<<<
I will go slowly. Think I will do the Salt/C 1x today, 2x tomorrow and if all is well 3x afterwards. If I have to, should I ramp down or abate for a few days?
NO-NO-NO... i'd stay with the 1 dose per day for at least a week.... PACE, NOT RACE... no pun intended!
>> >>>Also, I've been taking Gerson
Potassium Compound salts THE ENTIRE TIME I've been on salt/c in order to rebalance potassium loss due to the increased sodium intake.<<<
>> When my computer crashed, I lost that link. Would you post it for me if you have it?
Let me get back to you... my old supplier has increased their prices, so i'm looking for another.>> >>>Please go slowly pace... the initial s/c herxes can come on quick and fast, and if you ramp up too quickly you'll not like the subsequent herxes.<<<
>> I'll be careful. Any info on how Dr. K arranges/handles his consults/appts?
So he doesn't do phone consults. We can discuss more details via email if you like.
