Lyme roll call - Page 2

[Panserbjorne]

I'd stick with Lady Barbara's for now. You can re-evaluate if you need to.

Great choice for an anti-syphilitic remedy!

[Astrid1024]

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.

[Panserbjorne]

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.

[Subhuti]

Originally Posted by sarah.astrid

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

[Koalamom]

Originally Posted by Panserbjørne

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.

Originally Posted by Panserbjørne

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?

[Koalamom]

Originally Posted by sarah.astrid

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?

[jamie79]

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...

[Koalamom]

jamie79, teasel is very safe during pregnancy and while breastfeeding, per the knowledge of my herbalist midwife. Hopefully you are cured!

[Panserbjorne]

Originally Posted by bluebirdmama1

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!

[Astrid1024]

Originally Posted by CatskillMtnMama

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.

[Astrid1024]

Originally Posted by bluebirdmama1

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?

It seems to be working well I think. By well I mean that when I introduced it into the mix, I felt really poorly for a couple of days and then felt a renewed energy accompanied by moments of intense well-being. You know what I'm talking about? Those moments when you are warmed to your core knowing it will be alright eventually.

I never have had my LO tested. I'm almost certain it would be positive. At one year old though he does not show any outward signs. We have not vaxed him because of what we believe is a strong link between Lyme and Autism. Thinking I could have saddled my precious child with this illness makes me frantic inside.

[Koalamom]

Originally Posted by sarah.astrid

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

Lots of those supplements sound good. If the teasel doesn'twork, you could try differebt preperations of it or it may not be the right (or just only thing for you). I am just brainstorming knowing I would want to try everything natural before any abx. Have you tried salt and vit C at lymephotos.com? It worked for my dh and his lyme. Have you tried homeopathy? I have found that the teasel works so much more effectivly with the addition of homeopathy. And I have worked on really eliminating my food allergens. I don't need any extra stresses on my body now.
I have thought about abx many times, but as long as I am breastfeeding, it isn't going to happen, but I probably wont ever since I am seeing great healing. I just know how it is when you are feeling horrible, the abx sounds great.

About your LO and possibly having lyme, try not to fret, I hear that it many not be that common. When I had my baby and the test results came back positive shortly after his birth, I was crushed, cried for days. I just love my son so much that I couldn't have ever wished this on anyone especially my own child. I just have to be greatful I know. I have talked to several moms who have gone through autism type behaviors with their children, and come to find it was lyme. If issus arise with my son, I know where to start without beating around the bush. Everyday that I see new developement and growth is a blessing that everything is going to be alright. I am hoping that all the things I am doing for myself treatment wise will pass to my son and will get rid of his lyme. I haven't had my 2 yr dd tested but may request it at her next ped visit.

[chlobo]

Not quite ready to share my story but wanted to subscribe. Wished I'd found it earlier.

[Astrid1024]

For those mamas who live with or have loved with neurological manifestations of Lyme, I wanted to share that I am taking LDN (low dose naltrexone). I have had multiple MRI's which show evidence of demyelination. I have a lot of symptoms that would lead a less Lyme-literate physician to believe I have MS. I, of course, know I do not have MS but neuro-lyme. Since neurological Lyme Disease looks a whole lot like MS, LDN is useful for both. LDN has absolutely changed my life. I have had a complete cessation of symptoms. No more dizziness, tippiness, numbness, tingling, brain-fog. All gone. I intend to take LDN for one year and have another MRI. I have no doubt that the MRI will show a healing of the brain lesions I do have, or at least no new growth.

You can find out more here:
http://www.lymebook.com/lyme-disease...naltrexone-ldn
and here
http://www.lowdosenaltrexone.org/

Also see articles at pubmed:
http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=20

http://www.ncbi.nlm.nih.gov/pubmed/1...m&ordinalpos=5

http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=23