The Lyme Disease Thread

[CarlaB]

Kassandra, I've got to run, but I wanted to say that I think you've got it covered. Take a notepad to the appt.!

They probably haven't heard of Humaworm .... my PA didn't.

I don't think they're going to tell you to NOT get other testing, generally they want a good differential diagnosis.

He will have your IGeneX results at the appt, right?

[confusedks]

Carla,

We will get the Igenex results when we see him...assuming everything went through with Igenex and he approved the tests.

Kassandra

[dlp252]

Kassandra, your list of questions seems pretty good and complete. Other questions will probably come up as you talk to him, but you may want to ask what other things he will test for. Although, after talking with me about my symptoms, my LLMD went down a list of things he wanted to test me for--I really didn't have to ask.

Make sure you take him copies of all of your labs from within the last year, that way he won't have to repeat any tests unnecessarily.

My first appointment was LONG...it was at least 1.5 hours.

[aprilh]

Does anyone know what the deal is with the lyme symptoms being cyclical? I guess it comes and goes with your internal cycle?

[dlp252]

Does anyone know what the deal is with the lyme symptoms being cyclical? I guess it comes and goes with your internal cycle?

I don't think I really know the answer to this, but my theory is that hormonal changes, as well as stress, and other influencing factors play a huge part on how our bodies function or don't function. I just think that yes, during certain times of the month, year, life, our bodies will react differently to different things. Just a theory though, lol.

[CarlaB]

I think it also has to do with the life cycle of the bacteria itself ... or maybe it's just the ebb and flow of your immune system getting the upper hand, then the bacteria ... who knows?

[Rachel--24]

Kassandra,

I'm glad you're getting all of your questions together...it pays to be proactive. Knowledge is power!

I would also ask about additional testing. Remember, chronic Lyme is never *just* Lyme...you might want to ask about heavy metals (almost always an issue), co-infections (I'm positive he would test for these if he suspects Lyme), yeast, parasites, nutritional deficiencies and possibly liver and kidney tests if you havent had any done recently.

[lilypad23]

Hi. Sorry I haven't been back in a while. I've been super busy with finals, but now they're finally done and I have a break . Anyways, I really appreciated all the advice and everything but I just had a question. About a week after my first post, I just woke up one morning and noticed that I felt a lot better, and since then I've been improving a lot. I'm starting to feel like I did those first two days gluten-free. The spots in front of my eyes are also starting to lessen. I'm still wondering, though, if I should just get the test done just in case because of all the constant tick exposure. What do you guys think?

[CarlaB]

I am starting to feel like a hypochondriac, but I think this might be a possibility. I have two dogs and they have ticks and I constantly get bitten by ticks. I mean, practically every day I find a tick on me. I keep my dogs bathed and all of that, but they still have them. Its really annoying . Anyways, I was looking at the symptoms and I have a bunch. I don't know if they're just caused by gluten intolerance or if I could have this, but I'm starting to get a little worried because lately it seems like every day I'm just getting worse and getting back to exactly where I was before I went gluten free. When I first started the gluten-free thing, I felt fabulous, better than I had felt in years. That only lasted for a couple of weeks though and then I gave up dairy and soy because Enterolab confirmed that I was intolerant of those things and I felt a little better. Then I was still sick so I gave up nightshades and still didn't feel better. So, then I gave up rice and corn about a month or more ago and got a little better, but now I'm getting worse again. I figured out that I was possibly getting glutened when I went to work because I worked at Pizza Hut so I quit my job. However, I have not gotten better and in fact have really gotten worse. Everything I eat makes me sick, but if I don't eat, I get even weaker than usual. Sometimes I feel like I'm like 80 or something and I'm only 21. I can't concentrate on really anything and I constantly have floaters in front of my eyes, especially when I'm outside. I don't know if I can deal with this anymore. Maybe I'm just a hypochondriac and everything is all in my head. What do you guys think?

Hi again!

I'm responding to your old post to bring it forward so people can better answer your question.

I would still want to be tested. You had symptoms and exposure.

Lyme symptoms cycle .... so you'll have better days and worse days ... that's normal. I wish I had been treated back before I got so sick.

[aprilh]

Caroline,

I am new to all of this myself. I actually haven't been tested but am planning to.

From what I have read, better to get treated early on than to wait. The longer you have it, the harder it is to get rid of. Not to mention all the damage done in the meantime.

With all of those tick bites I would definately get tested!!

April

[dlp252]

Lyme symptoms cycle .... so you'll have better days and worse days ... that's normal. I wish I had been treated back before I got so sick.

Caroline,

With all of those tick bites I would definately get tested!!

DITTO!!! You haven't got anything to lose, except perhaps the cost of the doctor's visit (my insurance plan pays 70% for out of network, so I would have only been out 30% of the cost). The LLMD will test for a LOT of things besides lyme, so even if it isn't lyme, you might still find something else. With all the tick bites though, I'd definitely want to get tested.

[Rpm999]

hmm, there's supposedly a great doctor not far from here...lucky, they really do test for a lot though? i'm EXCITED for that, because these normal doctors just don't know much about complicated issues....question though, carla, you saw my other thread...based on my symptoms, if i DIDN'T have lyme, what could i have? cause you said you felt exactly how i did, you've been through a lot too so

do they also test for deficiencies at a LLMD? possibly gland issues? cause those can be similiar as well, or play a part

[mftnchn]

My LLMD did a lot of testing. He could have done more, LOL, like for celiac. He apologized to me for that one!

[CarlaB]

My LLMD did the most thorough differential diagnosis I have had, and I had a very positive Western Blot for Lyme Disease. Even though we knew I had Lyme, he still checked for everything else, too.

And, in fact, he found a lot. I also have been treated by him for heavy metal toxicity and bacterial dysbiosis. He tested adrenals, which were okay, but is treating me for low thyroid.

In my non-medical, non-professional opinion, I think that the cognitive symptoms you described are most likely caused by neurotoxins. Lyme causes neurotoxins, but so can other things. You might check out www.chronicneurotoxins.com for more info.

What I am discovering is that most chronic illness does not exist alone. If the body weakens and allows one problem to take hold, like Lyme, then it will allow other problems, too.

Most LLMD's know this and treat the whole body back to health. If not an LLMD, I would at least go to someone who looks at the whole picture ... hard to find these days unless you go outside of conventional medicine.

BTW, I was on Questran/Cholestyramine for toxin absorption for several months. I am not nearly as bad as I was before, though I still have some cognitive symptoms. I still have quit a bit of Lyme treatment ahead of me, so this should continue to improve.

And, I know you are not exaggerating ... I used to find a grocery store hard to navigate ... it was so bad, my husband forbid me to go alone. I used to get lost driving to familiar places. Watching a movie was difficult ... I'd have to keep pausing it to ask what had previously happened. Just speaking English was like speaking a foreign language because I had such difficulty with word recall.

[CarlaB]

My LLMD did a lot of testing. He could have done more, LOL, like for celiac. He apologized to me for that one!

My LLMD routinely tests everyone for celiac!

[Rpm999]

thank you so much for answering any questions i have, you're a big help, i've learned so much from this site...it seems like most people with celiac got it for similar reasons, and there's a lot of mysteries behind it all

[CarlaB]

thank you so much for answering any questions i have, you're a big help, i've learned so much from this site...it seems like most people with celiac got it for similar reasons, and there's a lot of mysteries behind it all

Any time! I always check this thread, so if you have any more questions, feel free to ask.

[mftnchn]

Another question about lyme testing.

At this point in treatment, what do you all think I should seek as far as testing? Via Bowen labs, I tested positive to borrelia, babesia, erlichia. A repeat test later on showed borrelia and babs, I think.

Is there any point to doing Igenex? I wonder if I might have some other things and what the best test would be, like bartonella for instance.

[Nyxie63]

Is lymenet down this morning or is it my browser (again)? Can't get into the site at all.

[CarlaB]

Another question about lyme testing.

At this point in treatment, what do you all think I should seek as far as testing? Via Bowen labs, I tested positive to borrelia, babesia, erlichia. A repeat test later on showed borrelia and babs, I think.

Is there any point to doing Igenex? I wonder if I might have some other things and what the best test would be, like bartonella for instance.

My LLMD uses clinical symptoms for guiding treatment. If you've already tested positive, I would base the need for treatment on your symptoms .... at least from my experience with my LLMD. He uses the tests to support the diagnosis he makes based on symptoms. That's why my LLMD does not use the C D 57 test .... he bases all his treatment on symptoms.

I was diagnosed with babs and bart, and responded to treatment, but I tested negative for both. I was positive for borrelia with IGeneX.

Is lymenet down this morning or is it my browser (again)? Can't get into the site at all.

Looks like it's down .... it happens more often than on this site.

[dlp252]

hmm, there's supposedly a great doctor not far from here...lucky, they really do test for a lot though? i'm EXCITED for that, because these normal doctors just don't know much about complicated issues....question though, carla, you saw my other thread...based on my symptoms, if i DIDN'T have lyme, what could i have? cause you said you felt exactly how i did, you've been through a lot too so

do they also test for deficiencies at a LLMD? possibly gland issues? cause those can be similiar as well, or play a part

Sorry, coming in late to this, lol. Yes, my LLMD tested me for a LOT of other things. He looked at all my recent labs, then tested for whatever they missed. For instance...one of my doctors had tested for thyroid, but it wasn't clear if they had tested for the antibodies, so the LLMD tested me for the antibodies. I was tested for metals, mold, essential elements, vitamins, etc. I have another set of doctor's I see, that had already tested me for parasites, bacteria, dysbiosis, etc. so he didn't need to repeat those tests.

In my opinion, they are so used to seeing chronically ill patients with lyme (and as has been said above, lyme never seems to exist alone) that they routinely check for lots of other things too.

[truthsearcher]

hi Just an update.

I canceled my apt with the one LLMD d/t noone ever hearing of her.

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

I was told I could bring my one dd in who is having symptoms. If she is positive, I will get the other two tested via IgeneX.

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.

The only thing that tested positive was dmsa and I already take that once a week if I'm up to it.

Two other things that tested ok for me for lyme was Sarsparilla, and something called Monolaurin.

Hopefully this will help me get to my apt date.

Also I wanted to ask Donna about her spleen. I thought I remember you say you had an enlarged artery or something. Do you have any further info on this as I have the same thing showing up on US.?

Thanks and sorry if this is too long.

[Nyxie63]

Got a question for you...

I have my first appt with an LLMD on the 28th. So, what kind of questions should I ask him? I really don't know enough about Lyme, co-infections, or treatment at this point to ask an intelligent question about any of them.

Any suggestions?

Thanks!

[dlp252]

Laurie,

I had an enlarged ampulla of vater...it's the point in the intestine where the bile and pancreatic ducts join and empty into the intestine. Sounds like it might be different than what you have, although spleen comes up a lot for me in the muscle and electrodermal (hum is that the right word, lol...I'm having a brain foggy morning) testing I have done. I'm glad you'll be going to someone a little more known, lol!

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!

[AndreaB]

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.

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.