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Lyme roll call

post #1 of 34
7/28/09 at 9:09am
Thread Starter 
Do we have a thread? Assuming not can I get a shout out from anyone with Lyme-diagnosed/suspected/acute/chronic etc? I'm just curious to see how everyone is doing, what they are doing, and how they feel. I also may have some other nosy questions....TIA.

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post #2 of 34
7/28/09 at 9:28am
I apparently have lyme even though I haven't been bitten by a tick for many years. I just got diagnosed. I feel great, but my knee swelled up a few months ago, and I was in so much pain to the point of not being able to walk, that I was was in the ER with tons of tests. I could only find that I have old lyme.
I was pregnant at the time, so I decided that I wouldn't do any antibiotics for the lyme and just nourish myself.
I am drinking loads of nettles infusions, taking Blue Ice CLO, lots of vit C from acerola berries, and soil microorganisms along with probiotics. I have a pretty strict TF diet, so I was surprised that I had lyme that triggered, but I guess it was because I was pregnant and could have been a little weaker internally.
I had been eating lots of astragalus which is great for the immune system, and great for lyme, but I recently learned that astragalus is great for early stage lyme, but really bad for late stage/chronic lyme. It actually aggravates arthritic and joint pain from late stage lyme. I think my recent use of that herb could have bene the trigger. (this herb info is from the book Healing Lyme)
I also have been seeing a chiropractor, and have gotten great results from that.
I have almost no more swelling and no pain at all. I still feel great, and don't plan on doing any antibiotics even though I have my baby out.

This thread was started at the perfect time because I would love to hear from others that are dealing with lyme and not going the antibiotics route.
post #3 of 34
7/28/09 at 9:34am
My husband also had lyme and took abx and almost died because it contradicts a rare genetic disease he has, so he healed his lyme with the suggestions on this site. He feels great today and no more symptoms even though he has never been tested again.:
http://www.lymephotos.com/
(note, open link at own risk, pictures very graphic)

Also I can't do the abx just in case my baby has inherited the disease which a 50/50 chance, so I really have to go alternative routes.
post #4 of 34
7/28/09 at 9:34am
Thread Starter 
What test was used to determine this? What are your doctors offering you?

I'll share more in a bit, I want to collect info I have not biased first!
post #5 of 34
7/28/09 at 9:35am
Thread Starter 
Oh, feel free to respond with co-infections as well!
post #6 of 34
7/28/09 at 9:44am
My son contracted Lyme last month on a camping trip we took. He had acute onset Lyme with muscle weakness and pain in his left leg, then a fever later that week and finally a bullseye rash about 5 days out from the tick bite. Today is his last dose of antibiotics and he is doing great! Such a scary thing to think about though.
post #7 of 34
7/28/09 at 10:28am
My child got a lyme rash (growing bulls eye) last summer a couple of weeks (give or take) after a vacation.
We did a month of antibiotics. No other symptoms or issues since.
post #8 of 34
7/28/09 at 5:33pm
subbing for interest. I have 2 friends with chronic lyme (one is currently mega dosing abx and the other "sees" lyme everywhere including in my baby) and live in a neighborhood where 10% of ticks carry lyme. I really want to understand this.
post #9 of 34
7/28/09 at 8:28pm
I contracted Lyme last summer. It was acute, in the second stage by the time we got a diagnosis. I had fever, aches, and bullet rashes appearing randomly all over my body. I did three weeks of antibiotics-- my symptoms cleared up completely by the fourth day, and I haven't had any problems since then.
post #10 of 34
8/1/09 at 10:06am
Panserbjorne- I am still waiting for you to chime in.

I just found out yesterday that my newborn (less than a week old) tested positive for lyme. Wow! I am in shock and am still debating what to do for my baby. That means it passed through the womb to the baby. I cant imagine giving antibiotics to my tender perfect baby. I just don't know what to do.
post #11 of 34
8/1/09 at 10:37am
Thread Starter 
Frankly I'm a bit shocked that there wasn't more of a response. In particular I was looking for adults with chronic lyme or late stage acute lyme.

I'm so sorry for your babe. I can understand your concern over abx. That's a scary situation to be in. Do you have any alternatives you've looked into? What does your dp think? What do you think?

By the way, I think Buhner is brilliant and have read most of his books. What do you think about Healing Lyme? I haven't gotten my hands on it yet for an in depth read.

My dh has chronic lyme as do several friends. And yes, he did the abx and they "held" for around a year in his case. I also have several other friends who have either been dx this year, or had their kids dx. I have studied this subject for quite some time as a result of my dh (who experienced severe pain and neurological degeneration) I have gotten him to baseline and we are maintaining reasonably well so long as we keep up with the protocol. If we don't, the confusion and disorientation comes back fast. He has, in the past had trouble finding his way home. He also gets to a point where he can't climb stairs. I am thrilled that we have been able to manage it, but I wanted to do better.

I was more looking to see where people were on this journey. I recently attended a fabulous workshop on lyme and have been applying what I learned to dh and a few others with success, so I do have hope at this point. It's a long road for sure though.

I dont' know that I have a TON to offer, just more looking to see how many people were in this situation and what stage they were in.
post #12 of 34
8/1/09 at 11:04am
I have the book healing Lyme, and it is a great read. I have several friends that have had lyme and couldn't do the abx and they all used that books protocol and are lyme free now. It is good one to have on the shelf.

What I think I will do for myself and my baby is treat through me right now. I dowsed that what I need is high doses of soil micro organisms and so does the baby. I also tested that I need coq10 for the lyme to heal. I got the answer that it would take 9 months for my baby to be healed on the SMO.
I really trust my dowsing 100% for helping others. but I always feel inadequate when it comes to myself and my family, even though I had great success with the answers, (like healing chronic candida).
So I am going to use what I got, and still see a naturopath. I know a great one in NY that will see me over the phone. She has countless stories of healing others with lyme. And she sees children. I am not 100% with her on her more killing than nourishing approach, but she is good at what she does. I will use some of her info, and mine, and hopefully we will see results. This woman is very affordable too, and only charges $40 a visit if I can remember right.

I really want to hear from others and what is working for them.
post #13 of 34
8/1/09 at 11:16am
Thread Starter 
we use a TON of supplements, homeopathy (makes a difference in minutes for him, but needs to be repeated very often) nutritional approaches (no gluten, no sugar) and a teasel protocol is the newest addition. That has made a significant difference VERY fast. That may be something for you to look into for your babe (and yourself), if you have a practitioner in your area. I have no long term info myself, but have read and heard first hand stories of people who have recovered as well as seen their histories. It's why I chose to learn it. So far so good!
post #14 of 34
8/1/09 at 8:17pm
I was so happy to just run into a video from Susun Weed on teasel for lyme. I just love susun!
http://www.youtube.com/watch?v=1s6y_gLco18

Here is good one:
http://www.youtube.com/watch?v=IZjWZ3vK1bc
post #15 of 34
8/1/09 at 8:30pm
Might want to post to this thread: Mommas with Lyme Disease


Pat
post #16 of 34
8/2/09 at 12:06am
Thread Starter 
Thanks Pat! I bow to your linking abilities. You are the linkiest of the linky.
post #17 of 34
11/15/09 at 2:44am
Quote:
Originally Posted by Panserbjørne View Post
Frankly I'm a bit shocked that there wasn't more of a response. In particular I was looking for adults with chronic lyme or late stage acute lyme.

I'm so sorry for your babe. I can understand your concern over abx. That's a scary situation to be in. Do you have any alternatives you've looked into? What does your dp think? What do you think?

By the way, I think Buhner is brilliant and have read most of his books. What do you think about Healing Lyme? I haven't gotten my hands on it yet for an in depth read.

My dh has chronic lyme as do several friends. And yes, he did the abx and they "held" for around a year in his case. I also have several other friends who have either been dx this year, or had their kids dx. I have studied this subject for quite some time as a result of my dh (who experienced severe pain and neurological degeneration) I have gotten him to baseline and we are maintaining reasonably well so long as we keep up with the protocol. If we don't, the confusion and disorientation comes back fast. He has, in the past had trouble finding his way home. He also gets to a point where he can't climb stairs. I am thrilled that we have been able to manage it, but I wanted to do better.

I was more looking to see where people were on this journey. I recently attended a fabulous workshop on lyme and have been applying what I learned to dh and a few others with success, so I do have hope at this point. It's a long road for sure though.

I dont' know that I have a TON to offer, just more looking to see how many people were in this situation and what stage they were in.
I just found this thread and so I am subbing. I have chronic, late-stage neurologic lyme disease. I contracted it in 1997, was mistreated with an improperly selected short course of antibiotics and felt what doctors called "post-lyme effects" for years. Depression, brain fog, panic attacks, severe joint and neck pain. The list goes on and on. My face went number in March 2006, I had an MRI which revealed 20 brain lesions. I was misdiagnosed with MS but refused to accept that diagnosis given my history of Lyme. I found a LLMD in my state, saw him and was treated with different oral abx for about a year and a half in conjunction with Buhner's herbal protocol. I then got pregnant and gave birth to my son in October 2008. I balked at having more MRI's, but finally had one last month. It revealed 40 brain lesions, some the same as in the first MRI, others new, some had healed. I wish I had had several MRIs so I could track the trajectory of what was going on in my brain all that time. Live and learn. I am very, very holistic in my approach to life and raising my son, so I hate that I've had to utilize so many antibiotics. My LLMD wants to put me on a PICC line with rocephin which I refuse to do because that particular abx is such a mixed bag. I breastfeed and while rocephin is considered safe to use while bf-ing, I just don't want to throw his gut flora off with that stuff. Plus, I've heard abx just don't really get rid of the Lyme once its in such a late stage. Not sure what else to type, the whole thing just exhausts and scares me so much. I suppose it happened for a reason. The treatment I've received from mainstream medicine makes me want to go into patient advocacy. If I hadn't stood up for myself, I'd probably be on immune-suppressant steroids for MS.

Anyway, I know I'm a little late to the party, but thanks for starting this thread.
post #18 of 34
11/15/09 at 9:45am
sarah.astrid, I just replied to you in the other lyme thread, but had more thoughts as I came to this thread. Since you have had abx, I would recommed a good probiotic. I found for myself personally that the lyme symptoms were worse when I didn't take them. Still theory, but the good probiotic bugs protect you more from the bad lyme guys.



Just an update on me:
I started the teasel aproach and finished the bottle. I was unable to walk, and was in and out of the hospital several times for that, and had no feling in my neck and upper back. Early on into starting teasel, I regained abilty to walk again, and 3 months into it, I regained all feeling in my neck (that has been a long time without feeling). Since I ran out of teasel and was feeling great, I didn't take anymore. Big mistake, because just the other day, my neck went numb again. I hadn't taken teasel for about 3 weeks. My knees were popping this morning. Off to order teasel right away, perhaps a different kind to change things up. (any thoughts on which one this time, Panserbjørne?)

My tested lyme positive newborn son is still fine with know symptoms that I can see. In February I will get him retested.
post #19 of 34
11/15/09 at 10:01am
Thread Starter 
I have seen this pretty consistently with teasel. Both with my dh and with clients. It's excellent stuff. Were you doing teasel root? Which one? Are you doing any homeopathy along with it right now?
post #20 of 34
11/15/09 at 10:31am
Quote:
Originally Posted by Panserbjørne View Post
I have seen this pretty consistently with teasel. Both with my dh and with clients. It's excellent stuff. Were you doing teasel root? Which one? Are you doing any homeopathy along with it right now?
I did start out before th teasel with ledum 10m or 1m, (cant remember), and am now about to start some merc viv as a constitutional. I don't feel like I need any more ledum now, but hopefully this merc will do something.

The teasel I was using was a special prep from lady Barbara. She made it form the fresh young root she grew herself. Not sure if there are any better preparations?
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