Should I just go straight to an LLMD?

[Stephanie2]

After reading the recent 4-page discussion on lyme testing, I almost feel too overwhelmed to do the research and try to understand these tests (I have been doing biomed for 2 years with 2 boys with multiple infections and recovered autism - just so tired of research and spending money!). I am trying to decide if it is even worth getting the test b/c to be honest I don't know if I will believe the results and I think I plan to go see an LLMD either way (for myself and my boys). So is it even worth dropping $1230 on igenex tests?

 

The protocol that we follow incorporates some of what the llmd's would prescribe anyway: LDN, methyl B12, and so much more. My boys are on a constant rotation of antibiotics for chronic infections (strep, staph, klebsiella, clostridia, yeast, proteus, I'm sure I am forgetting something). It seems to me that an LLMD could look at what we are doing, maybe change around a few antibiotics (meaning try one that covers strep AND lyme AND possible coinfections AND the gut pathogens), and maybe add in some supplements. Could an LLMD look at a list of my boys' symptoms and just start treating and see what comes of it?

 

I mean money is not falling out of the sky down here in FL, I just wonder if I should save the $1200 and just go straight to an LLMD and let him/her run the necessary tests (cut straight to the co-infections, etc instead of wasting time/money on the initial panel). I have to say that I feel so strongly that my 2yo either has lyme of some co-infections or some underlying viruses (don't the LLMD's target viruses as well?). The way he reacts to OLE is nothing short of jaw-dropping in terms of, not only pandas, but his autism symptoms. His personality just comes to life, the eye contact increases dramatically, he has more speech, he becomes affectionate beyond belief, etc. This makes me wonder if the OLE, which is commonly used in the autism community as an antiviral and also for pandas, is targeting a serious virus that has been bringing this child down all along. Not to mention: sensitivity to light and noise, hypotonia, and the list goes on with his health conditions. Starting to get a little emotional...let's move on to my 6yo, shall we?

 

My 6yo does not strike me as much of a lyme kid, but who knows? He had some asthma as a child (until we started biomed), chronic infections, severe pandas (which does seem to respond to treatment), severe gut issues. And then there's me, whose lab report apparently could be included in a lyme textbook from what I hear. But where would this lyme be coming from? My mom who we highly suspect had lyme right before she became preganant with me? Could she pass it to me and I pass it to the boys? We lived in NJ, no stranger to the woods, the Jersey Shore, etc. I don't know, I'm so confused but I feel pulled in this direction.

 

My boys are on about 27 meds/supps each day to support all that has gone wrong in their little bodies. I have to wonder if maybe by including lyme treatment, we may be able to reduce this number down as some of their biomedical problems would resolve sooner or more fully.

 

Lots of questions, any and all input is welcome!

[eljomom]

HOnestly, if you are going to go to an LLMD anyway, at least let them order any tests they would specifically be looking at....I am truly not saying this based on anything other than the fact that many of us, who did throw down a chunk of change (not $1200 but a few hundred anyway) are still questioning the results we got, even though they say "negative". I don't know, really. Just throwing it out there.

 

Question---you said chronic staph---can I ask how you tested for that??? Three of my 4 kids passed around Impetigo (only cultured my son--it was staph) for 3 months this summer. My PITAND kid went crazy with the tics shortly after a high fever, and very, very shortly after had a major skin infection that I didn't know at the time was Impetigo. It wasn't till my son got it bad that I treated him--go figure. Saving my baby from "unnecessary antibiotics"---huh....anyhow, I wonder why it was so hard to eradicate in this house....You can PM me if you'd like.

[sf_mom]

Skip the testing and head straight to an LLMD. Let them figure out. They are like a good DAN on steroid's.... truly understand MCIS (multiple chronic infection syndrome) and how to treat your kids appropriate for their ongoing infections and potential any not yet discovered.

 

-Wendy

[JuliaFaith]

We did what SF mom suggests and it was a good decision. We are spending all that $ on treatment instead of the test. We did do some tests but they were very inexpensive in comparison.

[LNN]

Agreed. Sometimes the lyme docs use labs that accept insurance, sometimes they're willing to consider a clinical picture and do a trial treatment first, then test, etc. As you said, you're leaning this way anyway. Although most LLMDs don't accept insurance, they will usually give you the documentation to submit your own claim. Our visits have been covered about 50%. While they are no more infallible than Pandas docs or DANs, they do seem to have experience in the ugly bacterial and viral stuff. Good luck!

[Stephanie2]

Wow, that is quite a concensus! I guess I was bracing myself for the "how dare you skip the initial panel and go straight to an llmd..." lecture since this topic is so heated these days! LOL

 

Anyway, your comments are so very helpful and I think my husband kind of leans the same way. He has been fighting me on the testing but he is fine jumping right into lyme treatment. Maybe he has a sixth sense on this.

 

Next question is, how do I even go about finding the right md for my boys? I strongly prefer someone who is willing to work with our current biomed practitioner b/c pandas isn't going away anytime soon, neither is autism. The boys are on such a strict protocol and when it gets out of balance they fall apart. I need someone who understands the integrated part of this and can work with what we are doing. Maybe someone who is familiar with autism/dan protocol? Do I contact the LIA organization (lyme induced autism), anyone have any insight with this?

 

HOnestly, if you are going to go to an LLMD anyway, at least let them order any tests they would specifically be looking at....I am truly not saying this based on anything other than the fact that many of us, who did throw down a chunk of change (not $1200 but a few hundred anyway) are still questioning the results we got, even though they say "negative". I don't know, really. Just throwing it out there.

 

Question---you said chronic staph---can I ask how you tested for that??? Three of my 4 kids passed around Impetigo (only cultured my son--it was staph) for 3 months this summer. My PITAND kid went crazy with the tics shortly after a high fever, and very, very shortly after had a major skin infection that I didn't know at the time was Impetigo. It wasn't till my son got it bad that I treated him--go figure. Saving my baby from "unnecessary antibiotics"---huh....anyhow, I wonder why it was so hard to eradicate in this house....You can PM me if you'd like.

 

Eljomom, back in March 2010 my boys had a sudden onset of pandas during the time that my 2yo had a big flare of impetigo. I brought them in for throat cultures and my 6yo tested positive in his throat for staph aureus! At the same time this was all happening, I got an infection on my finger (around the nail - I think it's called paranychia) that usually indicates staph. So, I never did get a positive culture of the impetigo, but since he had it around his mouth and my boys kiss each other on the mouth, I am assuming that is how it got into my 6yo's throat. (this is beside the point, but my 2yo's thoat culture came up positive for enterobacter species - I still don't know how that came about - we are a family of medical mysteries LOL).

 

This impetigo has been going on for over a year now. When he is on Augmentin it fully remits, but the minute he goes off it comes back. I have done it all - bacitracin, altabax, intranasal admin of abx, several different antibiotics. Always comes back. So I finally decided that there must be some major resistence going on and I decided to go all natural and that has helped a lot. I still, though, have to use it 2-3 times a day, plus intranasally, to keep the sores away. I use tea tree oil in the bath and I use this product on the sores and in the nose:

 

http://www.iherb.com/NutriBiotic-Skin-Ointment-2-Grapefruit-Seed-Extract-5-fl-oz-15-ml/4727?at=0

 

HTH!

[melanie]

Hi

can you tell me about OLE.. Olive leaf extract? How much doyou use ,how long till results and what the results were?? Thanks soo much

Melanie

[sf_mom]

Skip the testing and head straight to an LLMD. Let them figure out. They are like a good DAN on steroid's.... truly understand MCIS (multiple chronic infection syndrome) and how to treat your kids appropriate for their ongoing infections and potential infections not discovered in them yet.

 

-Wendy

[Stephanie2]

Hi

can you tell me about OLE.. Olive leaf extract? How much doyou use ,how long till results and what the results were?? Thanks soo much

Melanie

yes, olive leaf extract. I use 500mg, 3x/day, new beginnings brand. when i first started it, in terms of pandas, i saw results within 3 days. I think it lost it's effectiveness after a few months though, so now I am going to rotate it with other naturals. I am doing oil of oregano right now and I'm not sure what else I will rotate it with. In terms of the autism symptoms, I think I also noticed a big difference in three days.

 

 

Skip the testing and head straight to an LLMD. Let them figure out. They are like a good DAN on steroid's.... truly understand MCIS (multiple chronic infection syndrome) and how to treat your kids appropriate for their ongoing infections and potential infections not discovered in them yet.

 

-Wendy

 

Wendy, did you want to say something? Don't be shy...LOL

Edited January 12, 2011 by Stephanie2

[MichaelTampa]

I also think for your case, heading to a lyme doc makes more sense than spending the money on testing. They will be able to gear any testing toward what they think they really need in order to decide what to do.

 

As always, ILADS is a nice place to ask, and so is the "seeking a doctor" forum on lymenet.org. Sure, LIA, how nice there is such a group. My sense is that there really is not a lot in our state, but I did run across recently through a contact here, with someone whose location might be good for you. Of course, I am happy to discuss my thoughts/experiences on my doc with you, although I would hope for you that you might find someone closer. PM me if you would like help with either of those last two.

 

By the way, I am preparing to give a talk about lyme at my local vegetarian club next month, focusing on clues that might lead a person to suspect lyme is involved. I think one of the big-picture items there is "doing things that help for others, and they help you some, but not nearly as much as they were supposed to help you", and I think the 27 supplements fits into the category. I was about 80 different supplements at one point before I considered lyme, and in retrospect, certainly consider that a clue. After reading Dr. Burrascano's guidelines (from ILADS website), I was able to redo the supplements to target with more useful ones and use fewer supplements and get more out of them. Of course, there was nothing like lyme treatment to make me just need way less.

 

Michael

[Stephanie2]

I also think for your case, heading to a lyme doc makes more sense than spending the money on testing. They will be able to gear any testing toward what they think they really need in order to decide what to do.

 

As always, ILADS is a nice place to ask, and so is the "seeking a doctor" forum on lymenet.org. Sure, LIA, how nice there is such a group. My sense is that there really is not a lot in our state, but I did run across recently through a contact here, with someone whose location might be good for you. Of course, I am happy to discuss my thoughts/experiences on my doc with you, although I would hope for you that you might find someone closer. PM me if you would like help with either of those last two.

 

By the way, I am preparing to give a talk about lyme at my local vegetarian club next month, focusing on clues that might lead a person to suspect lyme is involved. I think one of the big-picture items there is "doing things that help for others, and they help you some, but not nearly as much as they were supposed to help you", and I think the 27 supplements fits into the category. I was about 80 different supplements at one point before I considered lyme, and in retrospect, certainly consider that a clue. After reading Dr. Burrascano's guidelines (from ILADS website), I was able to redo the supplements to target with more useful ones and use fewer supplements and get more out of them. Of course, there was nothing like lyme treatment to make me just need way less.

 

Michael

 

Michael, last we spoke, your comment about you not needing so many supplements anymore really stuck out to me. I am pm-ing you...