New Protocol Concerns

You didn't list any probiotics - are you taking a high quality (& LOTS!) of a high quality probiotic? You will likely need 50,000 units or more a day just to give you some idea.

You are taking a lot of things to kill the Candida, but you didn't list anything (other than a clean diet) to help rebuild the good bacteria and that is essential.

Hello Traveler & Girlie-

I am eating yogurt 1c. daily, drinking Kombucha a few times per week, Saccaromyces B at bedtime, taking Colostrum (Immune Tree brand), today I purchased VSL3 at my local pharmacy to start today.
Do you feel this is not enough probiotics prior to today's VSL purchase?
What probiotics should I add?

I was told to never pulse rifampin.

So far, I am doing the Malarone, Doryx, Bactrim ds, Rifampin combo.
When I add the Tindamax pulse 2pills, 2 x daily for 2 days a week I will be in major trouble w/ yeast and head herxing!
My head swells - forehead & temples, entire sinus area and into hairline
& that's totally separate from the back of the head and side of the head pain & head pressure that's going on during a herx.

Any ideas?

Post Edited (Usedtogarden) : 9/15/2014 11:43:31 AM (GMT-6)

Be careful, I have read that Coartem and Rifampin should not be taken together.

Also see if VSL#3 DS is covered by your insurance. Non- prescription strength is like 120 billion cultures per dose and costs about $55.00 per month supply. VSL#3 DS is like 900 billion cultures per dose and my insurance covers it at a $35/mo co-pay. So if I want to I can cut the DS dose in half and get two months coverage time.

VSL#3 DS is the only prescription strength probiotic that I am aware of. Its prescribed for ulcerative colitis or an ileal pouch.

Not all insurance co's cover it. I spent a small fortune on the non-script VSL#3 dosage (sometime 4 caps a day, and 2 caps of Floristor) for well over a year before I went for the DS and got covered. Most of my GI issues have resolved but I still take the DS strength but just at 1/2 dose 5 or 6 days a week.

In my state insurance companies must cover all RX (with in normal policy limits) for all Lyme diagnosis for as long as the Dr writes the scripts.

I can't comment on if your combo is too strong. Its what is appropriate and how well you tolerate all with minimal side effect. I've taken enough ABX combos to kill a horse.
There was a period of time when I was on IV Rocephin, Double dose Mepron, Zith, Bactrim DS, all while pulsing TindaMax.

I've never had candida issues so I can't comment on what may be the worse contributor. Maybe take a 30 day break from all ABX, take Diflucan for a spell, and see if the VSL#3 helps. Candida and lyme/co sx overlap so much I couldn't begin to comment on the worse culprit.

I never tried to hit Lyme, Babs and Bart at the same time. I would drop the Rifampin, and focus on Babs and Lyme for a spell. But you say that Rif helps you the most.

Maybe mix in some artemisinin or Buhner's CSA blend. Have to tried Cat's Claw? or Serrapeptase to help with biofilms.

Lymebabe- thanks for mentioning dr ohhira's.
I have looked into it, but am leary b/c my immune system is basically checked-out for now.
As I just got over Shingles on top of everything else & shingles only hits when your immunity is low. THAT SHINGLES WAS AWFUL!
So, dr ohhira's might be too strong for me right now.
I'm too cautious to risk it right now.
I tried some raw, fermented organic cabbage (no vinegar) and my stomach was jumpin for the rest of the day- not good.

Post Edited (Usedtogarden) : 9/15/2014 2:56:05 PM (GMT-6)

Has anyone done a picc line a year+ after their acute lyme?
Was it too late to help, or could it still help?
Ceftriaxone 2g daily.

I am wondering if the reward is worth the risk...?

Usedto,

I have been treating since March 2010 and was on a PICC for 16 months (Dec 2011 to April 2013). It may have helped get me 50% better, took the edge off of some neuro sx, and relieved most of my joint pain and stiffness. Mepron for a year or so (7 months on double dose) also helped but I plateaued at 70%. And a second round of Rif (last time with mino and plaq) got me to 85%.

Finding what will work for the last 10 to 15% (mostly neuro) is a challenge. Currently weaning off ABX and doing combo Buhner and Cowden herbs with Colloidal Silver. There are still a few things I haven't tried that are covered in Rosner's latest book.

Is it Proto, Heavy Metals, some yet un-discovered tic vector, more parasites, need more time to just heal to body, or is this as good as it gets and I have to live with permanent nerve damage. Everyone is different and if some protocol didn't work before, it may work differently in the future when a different pathogen is prominent. Get Rosner's latest book if you can afford it. A good read.

Usedtogarden have you been tested for HLA and MTHFR genetic mutations? Also organic solvents? If you have any of these you need to take care of them first or you will never get better. You need to find out why your immune system is down first. I take Cholestyramine for mold. If you are in moldy environment you need to remediate or move. Have you read Beyond Lyme Disease by Connie Strasheim? She is very comprehensive about the reasons why we get Lyme in the first place. Also, I got to the point where I could not do abx anymore. They were making me horribly ill. I did silver which is a natural antibiotic and got some very good results. I don't think that you should be treating for years on end. If that's what's happening then there is something else wrong that's not being addressed. I started treating in August of 2013 and was off all TBD meds in April of 2013. I am almost 100%. I feel like to date I have addressed everything that's wrong with me genetically and toxic wise and that's what helped me the most.

IV Rocephin is recommended for folks with strong neuro sx, and it does penetrate joints and tissue deeper than any orals. But if you are overloaded with toxins now from orals, then IV may push you over the edge and make you feel worse. Sometimes slow and steady on orals is best way, unless your condition is so bad that IV is your only chance.

The thing about a IV treatment you need to investigate is insurance coverage and out of pocket costs. In most states IV is covered under major medical for only up to 30 days, max. A few other states cover maybe two months if the Dr really pushes. Then there are a handful of states that mandate insurance payment within policy guidelines for as long as prescribed for Lyme and related co's treatment. I feel if you will only be covered for 30 to 60 days, it may not be a good return on investment.

You have been in treatment now for what... about 16 months? You sound like you have gained a good amount of info on ABX and alternative herbals. You are way ahead of where I was at that stage of my treatment. And I switched LLMDs at 12 months in to get more aggressive.

Some studies show that IM Rocephin is almost as strong as IV Rocephin. Google this and read a few published papers. IM Rocephin (if you can inject yourself, or have a household member do it for you) will be covered as normal Rx with a 30 day supply covered under standard generic drug co-pay. Needles and supplies are minimal compared to IV and weekly PICC bandage changes. Best direct price on IV Rocephin, Saline, Heparin, and supplies is around $800 or so a month from Infuserve America in FL.

At first I had one infusion per day, 7 days a week. Then after a month or so, went to two infusions per day, 4 days on and 3 days off. Basically I infused mornings and evenings on work days and had weekend and Monday off. I did a 20 cc IV push that took maybe 20 minutes or so start to finish flush and heparin lock. Some folks do a standard drip bag, and for a few more dollars, a pressurized infusion ball, both methods took an hour plus.
I did have an infusion ball for IV Doxy taken in my last three months of IV. That was pretty cool cause I would set up in am and infuse during my commute to work, and finish flush and hep lock at the office.

Hope this helps. I should have started IV sooner than I did, but I had to wait to change policy coverage in annual open enrolment for December to be able to better afford treatment.

The concern I have about IV therapy is the large numbers of relapses that occur afterwards. I was supposed to do IV abx with my reinfection, but declined on that basis alone. There are tons of articles on this if you care to read them.

You may not be on the right herbs for the infections you have, or may not be on a high enough dose - or even too high for that matter - you would need a Lyme literate herbalist or a ND or someone else that is well educated in both.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal, no matter what type of protocol one uses:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I had to use a foot soak about 4 or 5 times a week - anything else seemed to be too much too fast for my body - dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural) and keeping the amount of stress in my life at a bare minimum.

b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections, especially if we are dealing with chronic infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria!


Keep on looking for what is right for you - it is out there!