The Lyme Disease Thread

[Rpm999]

i'll just have to make sure i compose a list of all my symptoms, thoughts, concerns...it's just horrible that i'm 17 and am this sick, i feel about 100

but are LLMD's going to test for all those things, even if i don't have lyme? i'm going to flat out say that i've just been sick for a long time with tons of symptoms and everything, but do they test for it all at once/go over it with you? that'd be great, an educated doctor is what i need

[CarlaB]

Laurie, Maybe you can keep working over the next three months to get your body detoxing. That process will take time and detoxing is critical to getting better with Lyme. Google neurotoxins, you will learn a lot. Also Dr. Shoemaker.

Nyxie, I agree that Kassandra's list is good. You might want to read the Dr. B guidelines on Open Original Shared Link. You will learn a lot about Lyme testing and treatment there.

RPM, a good LLMD will do a thorough differential diagnosis, which by definition means he rules out other diseases that cause similar symptoms.

[aprilh]

My oldest son didn't test well for anything either. My doctor finally found Colon + Caps by Biotics Research Corporaton that helps him. It's handling his metals. It may be that you'd have to start with something like that and as you detox some would be able to move on to something else. The Colon + Caps are not available online so you'd have to have your doctor order them if he/she doesn't have them.

Andrea,

What is in the Colon + Caps? How old is your son? I am interested in this. Is it a gentle detox formula?

Thanks,

April

[AndreaB]

What is in the Colon + Caps? How old is your son? I am interested in this. Is it a gentle detox formula?

I think it's gentle. My oldest son is 5.

The proprietary blend is as follows:

psyllium seed powder

mannitol

kelgin

apple pectin

peppermint leaf powder

flax seed powder

anise seed powder

bromelain

celery seed powder

lactobacillus acidophilus (DDS-1)

aloe vera powder (aerial part)

prune powder (fruit)

He takes one in the morning with breakfast and one with dinner.

Oh and it's Colon-Plus Caps.......I didn't realize plus was spelled out. It's 120 capsules so for him it lasts 2 months and it cost under $20. He was muscle tested for it.

[mftnchn]

I have another apt. set up with another but I'll have to wait 3 months.

My EAV meridian testing showed my body does not want to detox. I tested stressed on most of the detox stuff. Chlorella, act. charcoal, NAC, gulithione, garlic and anything she had on the shelf that would help me dotox.

I do detox baths but get really wiped out from them, I have to lie down.

I don't sweat at all, and any sauna makes me so sick.

Hi, TS. I agree that trying some detox could help. Coffee enemas have really helped me, if you are willing to try that. Also, dry skin brushing could be very helpful. I don't sweat easily either.

How long does your wiped out feeling last after a detox bath? After that, is it helpful at all? I wonder about doing this just with your feet as a foot soak.

Also, Dr. Klinghardt talks about how in his experience psychological stress can inhibit improvment. You might experiment with Emotional Freedom Techniques www.emofree.com. You can download a free manual, and learn to do this yourself for a few minutes each day. I'm not assuming you have major issues, mind you! Just suggesting one more thing to try that might make a difference to your body's detox.

[mftnchn]

RPM, yes, a really good LLMD will screen for many things. Have you got one in mind that you hope to see?

[Rpm999]

there's one near me i hear...but supposedly it's at this walk-in, is that normal? because specialists usually have their own buildings, but i really have no clue about a LLMD and how that works

[mftnchn]

I'd question it if he is at a walk-in clinic. Good ones are usually very busy in private practice.

[Nyxie63]

Nyxie,

I think Kassandra had a list of questions on the previous page of this thread...there were some pretty good ones.

In addition to those she listed, I'd ask about what other things he'll test for.

You can ask what treatment options you'll have and/or what protocol he uses.

He'll probably go over with you your symptoms, then ask you questions about that. Mine had me do some basic function tests right there in his office...like trying to walk one foot in front of the other in a straight line and seems like he did another one where I had to do something with my eyes closed. I failed both.

Hum, if I think of anymore I'll come back and post, lol. Stupid brain fog!

Thanks Donna!

And I understand the brain fog. That's why I'm making a list of questions to ask now. Figured I'd do this while I remember. That way I'm not sitting there with a blank look on my face at the appt. Its happened before. I'm also a reflective thinker, not a reactive one. Usually takes me about 3 days after a drs appt for it to all sink in and THEN I start coming up with questions.

Love my lists!

Nyxie, I agree that Kassandra's list is good. You might want to read the Dr. B guidelines on Open Original Shared Link. You will learn a lot about Lyme testing and treatment there.

Thanks Carla! I've actually read that before, but lost the link. Now I have it!

*giggle* I haven't copied anyone's notes since high school. Thanks for posting your questions, Kassandra!

[CarlaB]

I'd question it if he is at a walk-in clinic. Good ones are usually very busy in private practice.

Me, too, but I guess it's possible .... I'd post on seeking doctors at Lymenet to find out if anyone knows him. ALL the LLMD's are known there.

[Rpm999]

don't some walk-in's have specialists? i think there's different types, but people say he's great and "treating lyme aggressively"...supposedly he started off as a normal doctor, but contracted lyme

[dlp252]

don't some walk-in's have specialists? i think there's different types, but people say he's great and "treating lyme aggressively"...supposedly he started off as a normal doctor, but contracted lyme

Well, anything is possible! You could still post on LN asking if anyone has seen him...I know the LLMD I see is not well known on LN...there are a few there that know who he is because he shares an office with a very well known doctor, but not many have actually seen him. There are two much more well known doctors in our area, so that is who most people in my area see. You could always set up an appointment just for consultation, and get a feel for how much he really does know, then make up your mind whether or not you want to see him regularly.

[CarlaB]

don't some walk-in's have specialists? i think there's different types, but people say he's great and "treating lyme aggressively"...supposedly he started off as a normal doctor, but contracted lyme

That certainly sounds promising!! I know my LLMD is booked months in advance, so that's why most Lyme specialists just wouldn't be able to work in a walk-in clinic .... maybe you're just catching this guy early in his specialist career!

Most LLMD's have had Lyme ... not all ... mine has and so has his wife.

[Rpm999]

yeah, supposedly the place is always packed which is good...i remember from when i had severe athsma as a child, if a place is crowded you know it's good...all the bad doctors i've had, the places were practically empty, and they weren't even low end...makes you wonder if they're even real doctors hahaha...but yeah, if he has had lyme, i'm sure he's the best it can get...let's just hope he's a smart doctor overall, because it is a bit of a ride there, and he is just a normal doctor, so even if i didn't have lyme, i'd hope he knows about the other things it could be so i don't go in circles

question though, should he have an accurate test for lyme? i know you said the igenex thing, but i just can't afford to order tests, it'd be great if he had the test, because i'm sure he knows...i just don't want to go for nothing...also, you said sometimes it doesn't come up if it's deep in even if you have it.? how would a doctor know in that case? is there other levels that would indicate it or something?

[dlp252]

question though, should he have an accurate test for lyme? i know you said the igenex thing, but i just can't afford to order tests, it'd be great if he had the test, because i'm sure he knows...i just don't want to go for nothing...also, you said sometimes it doesn't come up if it's deep in even if you have it.? how would a doctor know in that case? is there other levels that would indicate it or something?

Most LLMDs, will take into consideration the Igenix test results, but will also do other testing to rule out other things. Even if the lyme testing comes out negative, having ruled out other things, they will usually make a clinical diagnosis. The Igenix test would be one of the most accurate tests for lyme...they specialize in lyme testing. My doctor had the tests already...I just gave them my blood and they sent everything in. Most lyme doctors do not contract with insurance companies so I had to pay up front for the testing, but the full cost of the western blots was covered and I was reimbursed for that.

[Rpm999]

great, let's hope so...if i had lyme, or anything with similiar symptoms, would it be surprising that i feel like that catscan dye i had 4 weeks ago amplified my symptoms? since i had that, i feel even more weak, dizzy, strange and it feels like it had an effect on my nerves, odd cold and hot feelings...before i had that dye, i'd sleep like 13 hours....now i sleep 4 hours and wake up like i never even went to sleep, my body feels MUCH more out of wack since i had that...and since i had that, i have an endless appetite, when these whole 11 months i've been sick i felt like i had to force food down and it seems like basic doctors just can't answer it

sorry to ask so much, but if either of you had an idea with that i'd love to hear it cause it even puzzles me, and i can tell you've gone through a lot with sickness so maybe it would ring a bell...it feels like i'm so reactant, and when i react to something, it sticks and just adds on to the pile...but it's just so much strain these 4 weeks....yesterday, i felt wired up and my mom even said my eyes looked like i was on drugs, and literally minutes later i felt like a truck hit me and couldn't stop yawning- crazy!

[confusedks]

*giggle* I haven't copied anyone's notes since high school. Thanks for posting your questions, Kassandra!

You're welcome! But in this case you're not really copying since I gave you permission and we won't get caught! LOL!

[celiacgirls]

I have results from a Western Blot done by the local lab. We also sent one to Igenix but I don't have that back yet. The doctor wanted to compare them. According to him, this test means my daughter has been exposed to Lyme in the past but it doesn't necessarily mean it is active now. He is opposed to treating with antibiotics and thinks we should try to build up her immune system. Her results are:

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?

[dlp252]

great, let's hope so...if i had lyme, or anything with similiar symptoms, would it be surprising that i feel like that catscan dye i had 4 weeks ago amplified my symptoms? since i had that, i feel even more weak, dizzy, strange and it feels like it had an effect on my nerves, odd cold and hot feelings...before i had that dye, i'd sleep like 13 hours....now i sleep 4 hours and wake up like i never even went to sleep, my body feels MUCH more out of wack since i had that...and since i had that, i have an endless appetite, when these whole 11 months i've been sick i felt like i had to force food down and it seems like basic doctors just can't answer it

sorry to ask so much, but if either of you had an idea with that i'd love to hear it cause it even puzzles me, and i can tell you've gone through a lot with sickness so maybe it would ring a bell...it feels like i'm so reactant, and when i react to something, it sticks and just adds on to the pile...but it's just so much strain these 4 weeks....yesterday, i felt wired up and my mom even said my eyes looked like i was on drugs, and literally minutes later i felt like a truck hit me and couldn't stop yawning- crazy!

Well, I know that lyme can cause all kinds of imbalances in your body. Some of my main symptoms are chemical, metal and food sensitivities. I've not had the catscan dyes, but I can say that I started reacting to my own allergy shots. It wouldn't surprise me one bit that a dye (whether chemical or natural) made you feel worse. Of course other things can cause sensitivities too, but that's where the LLMDs did what other doctors didn't for me...they tested for TONS of stuff.

I have results from a Western Blot done by the local lab. We also sent one to Igenix but I don't have that back yet. The doctor wanted to compare them. According to him, this test means my daughter has been exposed to Lyme in the past but it doesn't necessarily mean it is active now. He is opposed to treating with antibiotics and thinks we should try to build up her immune system. Her results are:

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?

Well, unless the lyme was treated, it's my opinion that she still has it. Carla is a good example of this. She's had it for years, but wasn't always sick from it. As far as being caused by other things...I think that's true...I'll repost (if I can find them) what the specific bands mean--some of them can be other things.

A LLMD would probably take into consideration any ongoing symptoms along with this test...the diagnosis would probably be "clinical".

I'm also interested to see how the Igenix testing compares to this. I can see that the IgM panel does not test for as many bands as the Igenix test does. The IgG has most of the bands I think.

So here were my Igenix western blot results:

IgG:

18 kDa -

22 kDa -

**23-25 kDa +

28 kDa -

30 kDa -

**31 kDa +++

**34 kDa -

**39 kDa -

**41 kDa ++

45 kDa -

58 kDa +

66 kDa -

73 kDa -

**83-93 kDa -

IgM:

18 -

22 -

**23-25 IND

28 -

30 -

**31 -

**34 -

**39 -

**41 IND

45 -

58 -

66 -

73 -

**83-93 -

I got a diagnosis of lyme (plus LOTS Of other things). My positives are mostly on the IgG side, but I have TONS of symptoms of chronic lyme. A lot of doctors don't believe in chronic lyme...somehow they believe that lyme just goes away.

Okay, here is a brief explanation (part of a MUCH longer article, lol) of the Western Blots:

The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp .

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).

At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A).

When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing.

Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.

----------------------------------

Here is his update written sometime around 2005.

When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have Lyme borreliosis and the testing is stopped right there.

Screening tests that are positive are often followed by a test called the Western blot. The blot is a

[dlp252]

Karen,

(sorry that post was so darned long that I broke it up, lol)

I just wanted to add that I have not been treated with antibiotics either. My doctor is doing exactly what yours wants to do...he is building up my immune system and my body's natural abilities to detoxify and in general just making sure I can handle treatment. I've been taking herbals and supplements and actually am feeling much better than I was a year ago. Part of my problem is that I have mold toxicity...I am still being exposed to the mold and my doctor does not want to start major treatment of any kind until that exposure is reduced or elminated.

[CarlaB]

RPM, ditto what Donna said ... good advice, I have nothing to add.

Karen, your daughter's test has no specific Lyme bands, which isn't unusual for a local lab. An LLMD would not diagnose Lyme on that test .... but might diagnose it clinically. You might have different results from the IGeneX test.

I was IgG positive with 8 positive bands and only indeterminates on the IgM. Most doctors would say that indicates past exposure because of their lack of education on Lyme Disease. Even the CDC says that you are positive with an IgG positive test! So, "past exposure" doesn't work for Lyme ... in fact, all a Lyme test can show is "past exposure", that's it! It's exposure plus symptoms that equals a diagnosis.

You might got to ILADS.org to Dr. B's diagnostic and treatment guidelines. That will explain a lot.

[celiacgirls]

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.

[Rpm999]

sounds good, thanks....yeah hopefully i find out what, but i KNOW whatever may be wrong is causing me to be extremely sensitive....before i was sick, nothing bothered me, i actually overcame allergies i had as a child, then when i started to get real sick it became like EVERYTHING makes me act up....i was just curious about how come these reactions haven't gone away, it just feels like it adds on and sticks there...but hey with how messed up my body is, not surprising...i just had all doctors and everybody say it's literally impossible to have a reaction like that and it's never happened in history, but hey, these are the same people that said "there's no such thing as a vitamin deficancy" LOL...the bodies just so complicated, huh?

[dlp252]

Karen,

that sounds like a wise plan. I think it probably COULD be another type of infection. I've been plagued with infections other than lyme too.

RPM,

I agree it's just not normal to react to everything! I couldn't get any of the regular doctors I was seeing to admit that, lol. They kept wanting to treat symptoms, but I felt deep down that there was something else wrong. Nobody goes from completely healthy to reacting to everything. My allergies popped up literally overnight. I wasn't just allergic to one or two things, I was allergic to nearly everything they tested me for. It's just NOT normal in my opinion, lol.

[CarlaB]

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.

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.