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Posted 6/25/2016 5:06 PM (GMT 0)
Any suggestions? I will eventually get in to see mine here, just can't wait that long... I need to get started!

Thanks, everyone. And if there is some protocol to this question that I'm unaware of, forgive me.
Posted 6/25/2016 5:22 PM (GMT 0)
Which country/area of the country are you in?
Posted 6/25/2016 5:24 PM (GMT 0)
How much can you afford ? ...i hear jemsek gets results
Posted 6/25/2016 5:31 PM (GMT 0)
I am in Canada...but I was tempted to go to Dr. J. - in fact I called to see if he did phone appointments (I had read he did) - and the receptionist said he does...but you need an initial in-person consult first. I asked about the cost...and sorry but can't remember - it wasn't outrageous.

I would either choose him.... or Dr. M. (bartonella guru)

I don't know if Dr. Horowitz is seeing patients - anyone know? He'd be another good one.

If you decide on Dr. J. - just know that he does a pulsing approach - with lyme, bart, babs. So, if you don't like that approach...then he's probably not a good choice for you.
Posted 6/25/2016 6:40 PM (GMT 0)
Dr H had been taking in new patients (I started seeing him recently). I'm not sure if the new patient window is now closed again but could be worth calling. So far I'm happy with how things are going but it is still too early too tell. But I have great respect for him and a lot of trust in his methodologies, critical thinking, and ability to improvise and troubleshoot. I def feel very lucky and privileged to get to have him work on my case.
Posted 6/25/2016 6:59 PM (GMT 0)
http://www.casewatch.org/board/med/jemsek/order.shtml

This is pretty scary. Just be careful whomever you see and please do not resort to a picc line or any other long term indwelling IV treatments. Lyme is serious. But this type of treatment could kill you.
Posted 6/25/2016 7:20 PM (GMT 0)
I think Dr Y in St. Louis is the bet mystery disease doc I ever met.
He looks for causes not quick fixes and checks and treats issues that others don't
He saved my life-St. Louis-Prevention and Healing

**edited only to change name to initial**

Post Edited By Moderator (Girlie) : 6/25/2016 4:09:54 PM (GMT-6)

Posted 6/25/2016 8:00 PM (GMT 0)
Thanks, everyone! Sorry I left out geography...I am from Memphis, TN
Posted 6/25/2016 8:00 PM (GMT 0)

JDB15 said...
http://www.casewatch.org/board/med/jemsek/order.shtml

This is pretty scary. Just be careful whomever you see and please do not resort to a picc line or any other long term indwelling IV treatments. Lyme is serious. But this type of treatment could kill you.


" For each of the patients, there was no historical, physical, serological or other laboratory evidence to support his diagnosis of Lyme disease "

No, they maybe didn't test positive for lyme disease (serological/laboraory), and they may have not had a tick bite with EM (physical), and they may not have been in what's considered an 'endemic' area (historical) -
BUT - they may have had a lyme specific band along with symptoms with other 'ailment's ruled out..and a clinical diagnosis was made.

If you watch Under Our Skin, you will see what happened to Dr. Jemsek - he ended up filing for bankruptcy and moving his clinic.

I have emailed with patients of his and he doesn't prescribe IV antibiotics for all patients...
Posted 6/25/2016 8:05 PM (GMT 0)
JDB - have you watched Under Our Skin? if not, it is a great documentary on Lyme Disease...definitely worth a watch.
There is also a sequel "Emergence" that follows up on the people in the first documentary.

You should be able to view it for $5.99

Here's the trailer:

www.underourskin.com/film/
Posted 6/25/2016 8:23 PM (GMT 0)
Also Dr L (I hesitate to use the full name, but he is quite public about what he does) could be worth looking into, incredible doctor, very smart and compassionate man. He wrote a great book too, In the Crucible of Chronic Lyme.
Posted 6/25/2016 9:19 PM (GMT 0)
I also wanted to mention - that while the majority of us do not need IV antibiotics, in some cases they are warranted, and have helped many people.

One reason is if the patient can not tolerate the orals because of gut issues....
Posted 6/25/2016 9:27 PM (GMT 0)
I am in a little bit of a tug of war of methodologies with these doctors vs holistic/alternative medicine doctors. I am a much bigger fan of alternative medicine for a few reasons and I understand everyone is entitled to their own opinion about treatment. I also know there are a lot of people out there who have gotten better with antibiotics. I have been off abx for over a year and am only on a natural/alternative protocol. Right now I'm just healing my gut- nothing else. I've read about those who take long term abx- whether oral or IV. They do help but they also seem to cause symptoms to come back as soon as someone goes off them.

I was also reading about quorum sensing- where pathogens go deeper into the tissues due to them sensing the chemical changes in the blood by antibiotics. What do you all think?
Posted 6/25/2016 9:30 PM (GMT 0)
Hey Girlie
No I haven't seen it. I am relatively new to all this.
I understand how debilitating this can be though and understand people wanting IV abx. I guess I'm just saying people should be aware that that's not a totally innocuous treatment and people need to be careful what they do when feeling desperate. I have seen so many die of sepsis and endocarditis from indwelling lines.
Posted 6/25/2016 9:40 PM (GMT 0)
For sure, JDB - it's not something to take lightly.


Just a note: People do also die from lyme disease - they can have Lyme Carditis. It's not common, but it does happen. It's by no means 'benign'

"I've read about those who take long term abx- whether oral or IV. They do help but they also seem to cause symptoms to come back as soon as someone goes off them."

Dave, I know several people (and I haven't been searching) - from my area of the woods who have healed and stayed symptom free. They did antibiotic treatment - some did herbs alongside...others only abx.
Since healing...all are off both herbals and abx.

One has been symptom free for over two years now.
Another one has been about 5 years.

I don't know how long the other ones have been symptom free.


It's definitely an individual decision.
Posted 6/25/2016 9:42 PM (GMT 0)
JDB it is a touchy subject that has been discussed furiously here.

I also am heavily against IV's but we have to be understanding of those that have tried everything else and this is their last resort.

We need to encourage and uplift those ailing people also.

Hopefully they know the pros and cons.
Posted 6/25/2016 9:43 PM (GMT 0)
Hey Girlie
Did you see/read this?
Do you have any thoughts?

It certaibly doesnt sound encouraging :(

http://www.nejm.org/doi/full/10.1056/NEJMoa1505425

Nejm is pretty heavy duty stuff...
Posted 6/25/2016 9:47 PM (GMT 0)
I definitely understand the desperation.

I am feeling awful, again, today. This is 7+ weeks of unrelenting flu like symptoms and widespread neuropathic pain. I am getting pretty desperate myself both for an answer and treatment. (Sorry don't mean to hijack the thread)
Posted 6/25/2016 9:55 PM (GMT 0)
my thoughts - do you really want to get me started? LOL

We do know that longer treatment of antibiotics is successful for many people.

Why did this study fail to show longer treatment is effective?

some thoughts:

- co-infections weren't treated
- cysts weren't treated
- biofilms weren't treated
- doxy group may have failed due to mono therapy (need two or more antibiotics)
- unfortunately - they may have needed longer than 12 weeks.
- other issues may have not been dealt with - adrenals, thyroid, candida, viruses.....


We have members who are improved since starting antibiotics..

My opinion is to do both - cover all bases. I personally have been doing herbal and antibiotics...but have recently stopped the herbals...but will definitely add them back in again...
And....when I do get to symptom free - I will continue to take herbals...maybe indefinitely.
Posted 6/25/2016 11:03 PM (GMT 0)
Girlie,

Went to EarthFare to find herbal treatments and no one knew how to lead me. I meantioned "antimicrobials" but to no avail. Perhaps you could help? Also, do the natural anti-m's also require probiotic counter treatments? THX!!!! You ALL are helping a lot.
Posted 6/25/2016 11:09 PM (GMT 0)
2blessed2bstressed - The health food store clerks in my small city don't know anything about lyme disease...and don't carry the lyme herbs.
Is EarthFare a health food store?

You can order the herbs online.

If you're doing tinctures - there is Woodland Essence, Sage Woman Herbs...and others.

If you want to do capsules - there is Green Dragon Botanicals.

Yes, you should be on probiotics throughout your treatment - including herbals for Babesia. I like to take a few different probiotics...some in capsules...and also take Kefir (bought in the Dairy Section of the grocery store)

Re: Babesia - I have found Artemisinin to be hitting it hard. I just finished my fourth round of it...and yesterday was finally some relief of my body pain.
Posted 6/25/2016 11:13 PM (GMT 0)
www.woodlandessence.com

www.sagewomanherbs.com

greendragonbotanicals.com


1stchineseherbs.com
Posted 6/26/2016 12:04 AM (GMT 0)
Girlie, thanks! And are these considered "antimicrobials?" Or just overall immune system boosters?
Posted 6/26/2016 12:12 AM (GMT 0)
Those websites - have a vast array of herbs...some are antimicrobials...others are immune boosters, others are for adrenals...etc...

So, I'm gathering you haven't purchased any of the Buhner books yet?

You could go on his website and although the protocols posted are outdated...they will get you started.
Those are the protocols that were being followed until his new books came out.

Others may post some additional information from the new Lyme book that will help you, as well. I don't have the new lyme book, so can't comment on the new protocol.
If you're considering an herbal route...and want to follow Buhner's, the books aren't expensive. It would be a worthwhile purchase.

Japanese knotweed is a good herb to start with...it has a lot of properties that are beneficial - anti-inflammatory, anti-microbial, anti-viral, blood thinning...
It is used in both the Lyme and Bartonella protocols.
Posted 6/26/2016 12:36 AM (GMT 0)
Hey Girlie
I've enabled my email to become public.
Do you think you could email me that LLMD close to us in Ontario?
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