The Lyme Disease Thread

[celiacgirls]

Karen, if it's not Lyme, there is another bacteria causing these bands to show up. And for band 41, it has to be a bacteria with a flagella (tail). The only ones I know of are syphilis, gingivitis, and borrelia (Lyme). So, there's a good chance that she's got it .... but an LLMD would be able to tell you definitively.

As Donna said, most of us whose bodies allow Lyme to grow also have other bacterias there.

I'm glad you told me this. I was thinking it could be one of many bacteria and hard to pin down or easily dismissed by a doctor.

[mftnchn]

Thanks, Donna and Carla.

I will check out that site.

I think there is enough reason to suspect Lyme in my daughter that I will still call the LLMD to get it ruled out, regardless of what the Igenix test shows.

Would a positive band 41 and 45 indicate an infection of some sort, even if it isn't Lyme? I'm wondering if antibiotics would help her anyway. She has had a low grade fever and headache for months. No one has been able to find anything.

I think there are quite a few bacteria with flagella. I see that salmonella and e coli both have flagella. I do think there should be further checking of this due to her having symptoms.

[aprilh]

Hey everyone,

I have a bunch of questions.....I have just read Buhner's book, Healing Lyme. I have some ideas in mind and thought I would see what you think...

Has anyone tried any of the following herbs:

Andrographis

Cats Claw

Japanese Knotweed

Smilax - for herxing - binds with endotoxins in the blood

ALA

Teasel Root

Red Root for lymph support

Swedish Massage

I am thinking of starting with Teasel Root for its use with tonifying kidneys and liver, sore painful knees, and lower back. Weak legs. I seem to have most all of these symptoms at one time or another.

Also, red root because I feel my lymph system is always very sluggish.. Red Root is a lymph stimulant, BUT it is also a blood coagulant - so I am concerned that will bad for me- as a matter of fact - i probably won't do that one.

Siberian Ginseng - because I think that would be good for my adrenals and energy levels. I am concerned about being hyper with the dosage he says is good to take in the book ??

And he recommends swedish massage for lymph support - that would be better than red root, if I can afford it.

Let say you have lyme and you start treating it. Does that make some of the co-infections come out full speed? Like babs or bart? i am thinking bart fit me because of the breathing thing....wasn't it bart that has that symptom?

How does your LLMD know which herb to start with or which one you'll do good on? Is it sort of a trial and error type thing? Is there any that shouldn't be mixed with another? I know you should start slow and slowly ramp up. I do that with all new things I take just in case there might be a reaction. My chiro can muscle test me for herbs, but I'll have to order them and if I test negative then there's money down the drain......

Thanks!!! Should I post this on OMG too?

April

[CarlaB]

April, no need to double post .... but you could post a note there to look here.

I have used massage to help after herxes. For lymph drainage you can do something as simple as rebounding (mini-trampoline) ... I plan on buying one. Google rebounding and you will see how good it is. The massage helps get the toxins out of the muscles, so it's good, too. I would herx after my first couple massages. It's a treat for me to get these, not a "normal" part of my protocol.

The air hunger is typically caused by babesia, which can be treated with Artemisia. However, artemisia is usually used along with Mepron/Zith, or Malarone. I don't know about resistance issues with artemisia alone, I'd look into that first.

I use Samento (Cat's Claw). It's a good product. I ramped up slowly and still herxed from it. I take 20 drops at night before bed.

I used ALA along with NAC and a chelator when I was chelating heavy metals. I had no problem with it .... some people do.

LLMD's come up with combinations from experience .... they also go to conventions and learn from each other. My LLMD really likes the Cowden Protocol.

I just watched a Dr. B conference on Bartonella. He said that they used to treat Lyme only and for prolonged times (many years of constant abx). He said that if Lyme didn't weaken the immune system, the coinfections would never become a problem .... this is why the CDC and others say that babesia will self-resolve in six weeks ... it will in the absence of Lyme. So, in the past they'd just keep treating the Lyme only .... eventually the coinfections would resolve ... now treatment isn't as long since they treat the coinfections themselves.

Lyme, coinfections, etc. can flare when starting treatment.

I would incorporate exercise into any treatment protocol you do. I have put my Lyme into remission three times with exercise! Dr. B says he has seen this, too. He says it's essential. Even if you start out slow .... read the Dr. B guidelines at www.ilads.org and you will see how he recommends to get started.

In the beginning, exercise would make me herx ... now I can even play racquetball with my 19 year old.

[CarlaB]

PS There is a Buhner's message board ... if you search Lymenet, I'm sure you will come across a link for it as I've seen it mentioned there.

[mftnchn]

I've been on cat's claw for several years and it made a huge difference in my treatment.

I am currently, since Aug, on Japanese knotweed as well. Can't tell about that one.

Can you chiro check you with samples he/she has on hand?

[dlp252]

Off that list, the only one I'm taking is ALA. I have to be very careful with it though. I was taking one that I got from my LLMD, then bought a different brand when I ran out. The mg in the capsules was double what I had been taking, and I didn't realize it. That caused a few neuro symptoms for me, lol. Once I cut the dosage down, the issues went away.

My LLMD has recommended a few things that from his experience have worked well. My ART practitioner has also recommended a few and my BioSET pratitioner a few more. My LLMD knows both of these practitioners and is okay with all that they have recommended.

[truthsearcher]

Hi April.

Does it say anything about Sarsaparilla or Monolaurin in Buhners book?

My chiro has his own "pharmacy" and has a EAV practitioner in the office so I can test whatever he's got on hand.

I tested well for the Sarsaparilla and Monolaurin.

I did not test well for the ALA or Nutriferon which I hear some people take.

So far I'm doing ok, not better, not worse and it's been two weeks on these two items. One thing that happened yesterday is one knee totally locked up on me. I sat in my pj's till noon cuz I couldn't move a hair or excruiating pain. Finally I got to move it a little bit and it popped back in place. I haven't had that happen in a long time.

Excellent questions btw.

My first apt with llmd is in March, so I'm trying some natural stuff beforehand, just to see

[aprilh]

PS There is a Buhner's message board ... if you search Lymenet, I'm sure you will come across a link for it as I've seen it mentioned there.

Hey I just got your PM and don't know how to respond??

I had researched that Dr. J and he is about the only one i have found in this area. I will give him a call tomorrow!!

Are you from here, too?

April

[aprilh]

I have a rebounder, basically a mini trampoline - I just haven't been using it. And I got a gift certificate to take Yoga here near my house. I want to do the bikram yoga (the one with heat - sweat) because I feel so good when I sweat so I thought that would "kill two birds with one stone".

I will start back on the trampoline! I know I need to! I was thinking of starting the cats claw or one of the other herbs beforehand - do you think that would be a bad idea?

I have done detox baths 2 nights in a row and a e-coffee this morning. I think I finally did it right to feel the benefits of liver detox. I am thinking of doing 1 e-coffee everyday this week and keep up the detox baths.

Which herb do you think I could start with?

[CarlaB]

Hey I just got your PM and don't know how to respond??

I had researched that Dr. J and he is about the only one i have found in this area. I will give him a call tomorrow!!

Are you from here, too?

April

All you have to do to reply is hit reply at the bottom of the message .... kind of like when you're typing a reply here ....

I'm glad you're calling him, he seems like one of the really good ones to me, but that's just from reading articles about him. His heart is really in it .... treating us fringe patients -- HIV and Lymies .... LOL. He's the ONLY infectious disease doc I've heard of who is an LLMD ... there might be more, but I haven't heard of them!

No, I live in Ohio .... my grandmother spends summers near Waynesville, NC, so I visit her every year. That's near Asheville. She's actually across the street from Cold Mountain.

[aprilh]

All you have to do to reply is hit reply at the bottom of the message .... kind of like when you're typing a reply here ....

I'm glad you're calling him, he seems like one of the really good ones to me, but that's just from reading articles about him. His heart is really in it .... treating us fringe patients -- HIV and Lymies .... LOL. He's the ONLY infectious disease doc I've heard of who is an LLMD ... there might be more, but I haven't heard of them!

No, I live in Ohio .... my grandmother spends summers near Waynesville, NC, so I visit her every year. That's near Asheville. She's actually across the street from Cold Mountain.

We go up to Asheville occasionally. MY mom and dad both have a house at Lake Lure (Chimney Rock) so Its about an hour further to go to Asheville.

I am glad to hear he is a good doc. When I researched him I saw a bunch of lawsuits against him - which I know doesn't mean anything in that business! But its always scary to start with a new doc.

April

[CarlaB]

Here's a good article that was posted on Lymenet. Open Original Shared Link

[aprilh]

Hi April.

Does it say anything about Sarsaparilla or Monolaurin in Buhners book?

My chiro has his own "pharmacy" and has a EAV practitioner in the office so I can test whatever he's got on hand.

I tested well for the Sarsaparilla and Monolaurin.

Sarsaparilla AKA Smilax:

Binds endotoxins in the blood (blood cleanser), immunomoldulatory, antibacterial, antiparasitcal, antiinflammatory, hepatoprotective, neuroprotective, enhances bioavailability of other herbs (and drugs), analgesic, antioxidant, antirheumatic, anti allergic, antiasthmatic, antimutagenic, antifungal, antifatigue.

Functions in LYme disease:

Lessens herx reactions from die off sporochetes

modulates immune response

enhances immune response to lyme spirochetes

antiinflammatory for arthritic symptoms

crosses the blood/brain barrier and protects the brain

enhances cognitive function

reduces skin responses

lessens fatique

pain reliever

protects and enhances liver function

I don't see anything about Monolaurin.

[truthsearcher]

Thanks April for looking that up.

I ought to get that book huh?

I hope you and the family are well.

I really enjoy reading your posts.

[Rachel--24]

Lyme Ab IgM by WB:

P41 Ab. Absent

P39 Ab. Absent

P23 Ab Absent

Lyme AB IGG by WB:

p93 Ab. Absent

P66 Ab. Absent

P58 Ab. Absent

P45 Ab. Present Abnormal

P41 Ab. Present Abnormal

P39 Ab. Absent

P30 Ab. Absent

P28 Ab. Absent

P23 Ab. Absent

P18 Ab. Absent

The doctor also said that other things could cause those antibodies.

Would this be considered positive by an LLMD?

I dont think these results would be considered positive by a LLMD. The 45 band is not a Lyme specific band and the 41 band can be positive from any bacteria which has a flagella (tail)....and many bacteria do have a flagella.

However, Lyme cannot be ruled out with these results either. Its a clinical diagnosis based on symptoms and history. There are other things a LLMD might do....they might do an antibiotic challenge and retest, they might test using other methods, they might look for co-infections...or they might start treatment to see how she responds.

So even if the results are inconclusive she could very well have Lyme.

I had a few positive bands...not enough to make for a positive test....but still suggestive of Lyme. After alot of additional testing it was determined that I'd been exposed...but the bacteria was not very active. My symptoms were caused by other factors but I have been treating the Lyme...so that it does not become active....especially since my immune system is burdened by other things. I treat with herbs.

[Rpm999]

been a while, but supposedly that doctor i called contracted lyme a few times himself, and he's a normal doctor, just lyme friendly....i called and they have all the specialized tests, western blot and all that, which i'm happy about cause it makes it easier for everyone and supposedly he's real nice...people suffer so much but all they need is a doctor that's been through problems, cause most doctors don't even realize how hard complicated problems can be

[dlp252]

Rpm, that's great! Just FYI, there are western blots from different labs...you'll hopefullly have the Igenix western blots!

[Rpm999]

ah i should have asked that, she said they had a few different tests so i'd assume so, especially since he had it

[CarlaB]

It at least sounds like he might be open to it if you ask for IGeneX. It sounds promising.

[Rpm999]

the town that he's in is basically just forest so it doesn't surprise me he got lyme a few times, rhode island is such a big state for it, surprising they didn't have anything here until he came around

[aprilh]

Something wierd happened to me today. I was sitting at my desk eating my homemade turkey meatball soup and I sort of moved my eyes or something and I all of a sudden got REAL dizzy but in a wierd way. Almost like something happened. A reaction of some sort. Nothing was in the soup that I dont' normally eat. But anyway, I sort of felt like a "buzzing" feeling happened. Hard to explain. Wondering if this is indicative of lyme? It went away rather quickly but it was startling.

[CarlaB]

I've seen people talk about buzzing on Lymenet .... I've never had it happen to me, but I have gotten very dizzy.

[AndreaB]

I get dizzy more now, but for me I think it's the metals.

[dlp252]

Something wierd happened to me today. I was sitting at my desk eating my homemade turkey meatball soup and I sort of moved my eyes or something and I all of a sudden got REAL dizzy but in a wierd way. Almost like something happened. A reaction of some sort. Nothing was in the soup that I dont' normally eat. But anyway, I sort of felt like a "buzzing" feeling happened. Hard to explain. Wondering if this is indicative of lyme? It went away rather quickly but it was startling.

I'm not sure it's the same thing, but I had this for MONTHS. I describe it as feeling like my brain is disconnected and floating around in my head. Feels VERY WEIRD! It would happend whether I was sitting, standing, walking, etc. I could be sitting perfectly still and it would happen. My one duck doctor told me it was probably my inner ear and to take dramamine. Stupid duck. The ENT I was seeing did all sorts of inner ear function tests, and said it definitely wasn't THAT, lol. My LLMD seems to think it's lyme related for me, although it hasn't happened in a while now...It was happening every day almost all day long, and now it happens maybe once a month.

I still don't know exactly what that was from, but it was scarey!