I know this question has been addressed before, but I'd like to get the opinion of those who have actually experienced the pulsing. Do you feel it actually helped you vs. constant, daily antibiotics? How long did you pulse off the abx.? Did you ever herx bad when re-starting the abx.? In your opinion, was pulsing beneficial for you? We're considering stopping the abx. for my 12-year old niece for 4-weeks and substitute Diflucan for the abx. and add cat's claw + colostrum + glyconutrients. The Diflucan is supposed to inhibit an enzyme in the liver needed for the borrelia and the cat's claw is supposed to boost the immune system. Just wanting the opinions of others who have pulsed before. The mother is worried if she goes off the abx., she will worsen. But I feel by doing this, it will bring out the spirochete's from their cyst-form and make them vulnerable. It would also be an opportunity to get a postive test once and for all. Thanks in advance.
This is only my experience and nothing more. I guess you could call what I have done pulsing, kind of.
My first experiences with ABX were brutal. I started with Doxy at 200 mgs every day. Nothing happened until day 8 and I ended up in the ER.
Really scared to try again, I did some research. Found there were others, not particularly with Lyme that had been using a pusle system to treat various autoimmune disorders. They also recommended starting at micro doses, so you could learn how the herx would effect you.
I tried this and have found it to work really well. I have worked my way up to only 10 mgs of Minocycline on M-W-F. After several doses, the herx starts building and I get pretty uncomfortable, which is pretty hard for me to take, because I am very active. Doing this along with eating right, taking a few carefully chosen supplements and dealing with hypercoagulation I have gained about 85-90% remission. I usually end up quitting the ABX cause I hate the herx so much. I often take breaks for many months at a time and so far have never back slid back unless it is allergy time and that usually clears up when allergens settle down.
I feel really good and can walk long distances and hike at elevations of 7500 feet. I don't nap anymore and my have way more energy and no pain compared to my sick kids who are still fighting treatment at this point. They were to little to remember just how sick I have been. And I was sick, looked like an anorexic with cancer, after chemo and radiation. Not a pretty site. I look pretty normal now.
I know this isn't the norm and I have taken far fewer ABX then the majority, but I am also amongst the smaller numbers who have gotten a pretty good remission. So who knows for sure Posted by tempe (Member # 5000) on :
I've also been pulsing, because my liver cannot tolerate regular dosage of abx after 2.5 years of them.
When I take 1 augmentin every 3rd day, I feel 90% and have no liver pain.
When I take the regular dosage of anything, I have liver pain & feel awful after just a few days and then have to quit for several days anyway.
So I am pulsing either way, and when I purposely take just 1 every 3rd day, I at least can feel good and live normally.
Posted by tempe (Member # 5000) on :
Jellybelly,
Did you really mean 10 mg of mino? Just making sure it wasn't a typo for 100. How do you get pills in such small dosages?
Also, can I ask what supplements you have carefully chosen to accompany your low-dose mino?
Thank you.
Tempe
Posted by AZURE WISH (Member # 804) on :
I tried to pulse 5 days on 2 days off. Off the abx I got much sicker. and it ttok me a long time to regain ground.
This is just my expereince though. It seems like lots of people pulse and don't end up like me though.
Best wishes
Posted by snowflake (Member # 8950) on :
Well, Diflucan for Lyme is experimental. There have been no long term studies on Diflucan for Lyme and there was only a small sample used in the Dr. S study. However there is a lot of atecdotal evidence from users that it did help them. IF anything, it could take care of any fungal issues she might have developed as a result of the antibiotics, so most LLMD's would support using this I would think. I have taken both Diflucan and Flagyl and the flagyl helped me way more.
Again, colostrum for Lyme has not been proven to be effective. I know one individual who claims it helped her, but yet she used it years ago and is still trying other treatment protocols now reaching for anything and everything. One Dr. in KC uses Immunity Today but I don't know any other LLMDs that do.
Breaks from antibiotics can be beneficial to the body and my LLMD actually encourages it once in a while.
I think its a great idea to take a break briefly and try to retest for antibodies. I would not want her to backslide either and I understand the mother's concern. However, borrelia is very slow growing so a brief break is generally not seen as detrimental.
I have taken breaks when herxing became too severe to handle and possibly even dangerous. I am currently re-starting my babs treatment after a very severe herx that took me a month to get over.
What co-infections has she been tested for? How is she doing on the abx now? Any positive results so far or indication she is improving?
Posted by Jellybelly (Member # 7142) on :
Tempe,
Nope not a typo, that was 10 mgs. Mino comes in capsules, not the time releasaed though. I cut them into empty capsules.
I take:
CoQ10 300-400 mgs day, fuel for energy procution in cells. Magnesium 800-1000 mgs day from various sources. I am looking for other forms to be able to take more. Tiny amount of B Complex to aid in Mag absorption Mulitvitamin without Vitamim D, I am very high already. Excess D can leach calcium from the bones and puts it in the muscles, causing cramping and twitching. Vitamin E and Selenium which help to remove calcium from muscles. B-12 shots when I remember. Very recently I have added 2000 mgs. daily liquid L-Cartinine and 12 grams daily in 3 doses of D-Ribose. Both of these aid in building energy reserves on a cellular level. Seem to notice a real difference especially in the Ribose.
That's it. Most of them are pretty expensive, but out of all the supplements I have tried these make the biggest difference and are worth the money.
Oh, one more, Nattokinase, to keep the hypercoagulation issues in check. Very important so that all of these rather expensive supplements are able to pass through the viens and reach their intended targets.
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