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#1 of 34 Old 07-28-2009, 09:09 AM - Thread Starter
 
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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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#2 of 34 Old 07-28-2009, 09:28 AM
 
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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.
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#3 of 34 Old 07-28-2009, 09:34 AM
 
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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.
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#4 of 34 Old 07-28-2009, 09:34 AM - Thread Starter
 
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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!
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#5 of 34 Old 07-28-2009, 09:35 AM - Thread Starter
 
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Oh, feel free to respond with co-infections as well!
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#6 of 34 Old 07-28-2009, 09:44 AM
 
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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.

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#7 of 34 Old 07-28-2009, 10:28 AM
 
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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.

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#8 of 34 Old 07-28-2009, 05:33 PM
 
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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.

Jessi wife of mama to Lil D (10/08)
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#9 of 34 Old 07-28-2009, 08:28 PM
 
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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.

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#10 of 34 Old 08-01-2009, 10:06 AM
 
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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.
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#11 of 34 Old 08-01-2009, 10:37 AM - Thread Starter
 
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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.
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#12 of 34 Old 08-01-2009, 11:04 AM
 
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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.
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#13 of 34 Old 08-01-2009, 11:16 AM - Thread Starter
 
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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!
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#14 of 34 Old 08-01-2009, 08:17 PM
 
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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
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#15 of 34 Old 08-01-2009, 08:30 PM
 
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Might want to post to this thread: Mommas with Lyme Disease


Pat

I have a blog.
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#16 of 34 Old 08-02-2009, 12:06 AM - Thread Starter
 
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Thanks Pat! I bow to your linking abilities. You are the linkiest of the linky.
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#17 of 34 Old 11-15-2009, 02:44 AM
 
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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.

Mother to L.O. born at home 10.17.08 EDD for #2 4.21.2011
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#18 of 34 Old 11-15-2009, 09:45 AM
 
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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.
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#19 of 34 Old 11-15-2009, 10:01 AM - Thread Starter
 
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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?
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#20 of 34 Old 11-15-2009, 10:31 AM
 
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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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#21 of 34 Old 11-15-2009, 10:34 AM - Thread Starter
 
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I'd stick with Lady Barbara's for now. You can re-evaluate if you need to.

Great choice for an anti-syphilitic remedy!
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#22 of 34 Old 11-15-2009, 10:41 AM
 
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Thanks Mamas.

Panserbjorne - I am glad your husband is doing well. The confusion and brain fog that accompany lyme can be intense and his sounds as though it was very frightening.

Bluebirdmama - I am glad you have found Teasel is working so well for you. I've had problems with my neck as well - severe pain - and find that it flairs if I am lax with my diet, probiotics or herbs.

I've been using both Teasel Root and Teasel Flower Essence
The root tincture I get here - http://www.greenhopeessences.com/Ess...rm/teasel.html

and the Flower Essence I get here - http://www.greenhopeessences.com/Ess...rm/teasel.html
I cannot say enough about Green Hope Farm. They are awesome.

Hope you are having an excellent sunny Sunday.

Mother to L.O. born at home 10.17.08 EDD for #2 4.21.2011
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#23 of 34 Old 11-15-2009, 01:28 PM - Thread Starter
 
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we are using the teasel flower essence protocol from delta gardens which is several different preparations of teasel at different stages of growth and development. My husband, interestingly enough responded far more to the flowers than he did to the homeopathy-though we are using both at this point.
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#24 of 34 Old 11-15-2009, 01:33 PM
 
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Originally Posted by sarah.astrid View Post
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. .
In the late nineties I got lyme and thru lack of proper treatment it became chronic neuro, with same symptoms your describing. Hypoperfusion in the brain, lesions in the brain etc. I tried massive orals for a year and half, then did the PICC line w/rocephon .... for six months. While it's a very demanding process (you do the drip yourself at home) it's doable. It's not uncomfortable. I would wait til your little one is no longer breastfeeding.

I did the rocephon for six months, and had to stop because I had slush in my gall bladder. BUT it did finally CURE me of lyme. I've had no recurrance for ten years. It's worth it. It works. I went on to have a normal life, have two kids, get my energy back. Not all of my memory and cog. funx have come back, but after a few years, the important stuff does. It does take a few years after a successful treatment for the brain to heal, but most of the funx come back.

The only neg consequence for me was that I got sludge in my gall bladder. Ultimately, it might have been a contributing factor to my having to have it removed ten years later, but my drs at the time did not think that it was. Either way, the gall bladder surgery is a minor one, believe it or not. Having my life back is worth it.

Please PM me and we can talk if you want more info.

Liz

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#25 of 34 Old 11-15-2009, 01:35 PM
 
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Great choice for an anti-syphilitic remedy!
I wasn't sure why you said this, but after thinking about it, it is really the best choice of words. I looked up Mercury and it is alot like syphilitic issues, and mercury poisioning mimics what lyme does to the body too. This is really eye opening for me. I just trust why I need Merc Viv, but am understanding it more too.

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?
What is your DH doing for homeopathy? You don't have to share specifics if you don't want to.
What are you seeing wit the teasel, it returning?
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#26 of 34 Old 11-15-2009, 01:40 PM
 
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Originally Posted by sarah.astrid View Post
I've been using both Teasel Root and Teasel Flower Essence
The root tincture I get here - http://www.greenhopeessences.com/Ess...rm/teasel.html

and the Flower Essence I get here - http://www.greenhopeessences.com/Ess...rm/teasel.html
I cannot say enough about Green Hope Farm. They are awesome.

Hope you are having an excellent sunny Sunday.
Sarah, how is teasel working for you? Which is better for you, tincture or essence (never thought about taking it in that form for lyme).

Have you ever had your nursling tested?
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#27 of 34 Old 11-15-2009, 02:15 PM
 
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Just saw this thread, though I am on the other Mommas with Lyme Disease thread.

I contracted Lyme, probably in 2007 or late 2006. Wasn't diagnosed until late 2007 and started on a strict anti-allergenic diet and loads of supplements, with the help of my ND, who also has/had lyme. I am doing well. Actually, I am 8 mos pregnant and have been doing well, as long as I stick to my diet. Basically it is NT-ish, but avoids my allergens. I guess it is more Paleo/Primal.

I used Cat's Claw, but stopped it when I got pregnant. I am wondering about after the baby is here. I have thought about the Cat's claw again, though it is contraindicated during pregnancy and bfing. So, I am leaning towards teasel, after reading Lady Barbara's site. I don't know if I will need anything, though.

I just play it be ear and base it on symptoms. What else can I do, besides continue to strengthen my immune system, ya know?

I do wonder if the lyme is ever really cured or in remission...

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#28 of 34 Old 11-15-2009, 02:20 PM
 
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jamie79, teasel is very safe during pregnancy and while breastfeeding, per the knowledge of my herbalist midwife. Hopefully you are cured!
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#29 of 34 Old 11-15-2009, 02:43 PM - Thread Starter
 
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Quote:
Originally Posted by bluebirdmama1 View Post
I wasn't sure why you said this, but after thinking about it, it is really the best choice of words.
Because people who have chronic lyme are the ones that generally have an active syphilitic miasm. Merc is the chief anti-syphilitic remedy.


I looked up Mercury and it is alot like syphilitic issues, and mercury poisioning mimics what lyme does to the body too. This is really eye opening for me. I just trust why I need Merc Viv, but am understanding it more too.


What is your DH doing for homeopathy? You don't have to share specifics if you don't want to.
He is currently doing ledum when he needs it and staphysagria. We are also doing isopathic remedies.

What are you seeing wit the teasel, it returning?
Well, tte way the teasel works is that you do it frequently until you see symptoms diminish for a period of time. It's meant to be repeated. So yes, whenever he sees symptoms we treat. It used to be every other day, but now it's spaced out so that it's every six to eight weeks. If it goes longer it goes longer, if not then we treat. But since the symptoms are pretty much non-existent with it I'm good with that! There are people who were in REALLY bad shape that treat only once a year or so now. That's what we are looking for!
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#30 of 34 Old 11-16-2009, 12:47 AM
 
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Originally Posted by CatskillMtnMama View Post
In the late nineties I got lyme and thru lack of proper treatment it became chronic neuro, with same symptoms your describing. Hypoperfusion in the brain, lesions in the brain etc. I tried massive orals for a year and half, then did the PICC line w/rocephon .... for six months. While it's a very demanding process (you do the drip yourself at home) it's doable. It's not uncomfortable. I would wait til your little one is no longer breastfeeding.

I did the rocephon for six months, and had to stop because I had slush in my gall bladder. BUT it did finally CURE me of lyme. I've had no recurrance for ten years. It's worth it. It works. I went on to have a normal life, have two kids, get my energy back. Not all of my memory and cog. funx have come back, but after a few years, the important stuff does. It does take a few years after a successful treatment for the brain to heal, but most of the funx come back.

The only neg consequence for me was that I got sludge in my gall bladder. Ultimately, it might have been a contributing factor to my having to have it removed ten years later, but my drs at the time did not think that it was. Either way, the gall bladder surgery is a minor one, believe it or not. Having my life back is worth it.

Please PM me and we can talk if you want more info.

Liz
It's really nice to hear that it worked for you. I'm feeling sort of hopeless at the moment that this is just something I will always always have to deal with.

One major stumbling block for us is cost associated with the IV abx. I see a LLMD out of network and while my PHP is normally very accommodating in coordinating care, she won't sign off on ordering IV antibiotics - she's scared because she doesn't know enough about Lyme but is well enough aware that the legitimacy of Chronic Lyme is a very hot button, political issue. Hell, Infectious Diseases at the UW wouldn't even SEE me, let alone treat me. She knows this.
So the cost is:
$1500 for placement of PICC
$800 per week for the abx
$$ associated with weekly blood draws to check liver levels and the dressings done by a Home Health nurse.
My mom has offered to help offset the cost, but with all the reading I've been doing about how Rocephin is no guarantee (but what is, really??), I'm just not sure I want to incur the burden. The reason it is so nice to hear it's worked for you is because I'd read that the rate of relapse using Rocephin is pretty high because it is a cephalosporin (sp) and as such is highly anti-inflammatory. Once the patient goes off the Rocephin, they experience a flair in symptoms.

So right now, with the blessing of my LLMD, I'm taking a boatload of supplements while we try to decide what to do.

Vitamin D
CoQ10
Magnesium
Cod Liver Oil
Sachromyces Boullardii
Black Currant Oil
Coconut Oil
N-acetyl L-cysteine
SAM-E

Milk Thistle
Dandelion
Teasel Root
Ginseng
Knotweed
Cat's Claw

I think that's it. Whew that's a lot when you type it.

Mother to L.O. born at home 10.17.08 EDD for #2 4.21.2011
Astrid1024 is offline  
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