I'm back from my trip to Dr. S

[PetRescue]

LYME!!! AH! :sick:

Add me to the club! Wait, do you all charge dues for the club? Because I'm afraid I won't be able to afford much with all my soon to acquire abx 😛
I just got the results yesterday. I didn't get the printout yet, but here is what he said:

IgM-positive
31 +
34 (IND)
41 +
83 +

IgG-negative
39 (IND)
41+

I am shocked and yet not. I expected to test positive like all of you, but I have never, ever been bitten by a tick (or at least pulled one off of me). If I tested positive, anyone can. Hear that everyone-GET TESTED!!! I've never lived anywhere wooded, and now I'm scared that I may have gotten it from fleas from my pets maybe?  Sadly we have had fleas because I don't use the chemicals, but rather natural repellents that don't always work. With strays coming and going, it's been an issue. I don't know, I guess it doesn't matter, but you can bet I'm getting my son tested ASAP. Sadly I couldn't get in to see the doctor until next month, but that's OK, it'll give me sometime to get herxing on mino!

Now onto my trip to see Dr. S. It was fun! We got there saturday night and drove around looking for someplace for dinner. The crazy thing is, is that my husband  had gone to Ida Grove many times as a kid for a big airplane event they would have and it was one of his favorite spots. It brought back lots of nostalgia for him. So he remembered pizza hut on the lake where you could feed the ducks your extras. So we went there. A very cool place to look at, but it turns out you can't feed the ducks anymore, so it was just a regular pizza hut to me. It is the only chain restaurant in the town, except subway and blimpie. Then we wanted to go roller skating at the Skate Palace-but it is closed for the summer for weddings! Hehe, getting married at the skate palace! Cute 😉 I was so disappointed, but we found another skate place about 45min away(more on that later). They also have a tiny movie theater with one movie, but need 4 people to show the movie. We didn't get to go to the bowling alley because we were going to go on sunday, but it was closed. I think it may only be open friday and saturday, maybe even just nights. And that's about it for Ida Grove. They do have a grocery store for food and they have an ice cream place that probably opens in the summer. We stayed at Super 8 (which I recommend, the delux is um, scary) and the hospital is literally two minutes across the street. There is also a restaurant next to super 8 and it was pretty good. And close.

My appt was yesterday morning and it was well, disappointing to be honest 🙁 I think because I caught it so early, he didn't want to do any tests. Not one! No ASO titer (I brought up chronic strep and my enlarged tonsil), no c. [font=”Arial, Helvetica, sans-serif”] pneumoniae, not even a mycoplasma test. I understand the myco test is mainly to get insurance to cover IV's, but I guess I would have felt better getting something tested. I know it most likely would not have changed my treatment, but I like to see things-I want to see where I'm at and where the mino is taking me. That's the other thing, when we spoke on the phone, he said 50mg, MWF. Now he says 100mg, 2x/day, everyday. I was kinda looking forward to pulsing. I know that the 100 2/day is typical, but I wanted to do less. He said that 100mg is the typical treatment. And that was it. He told me to email him in a couple months letting him know how I'm doing. He was a super nice, kind guy, but I feel um, unfulfilled? And it isn't his fault at all, I just wonder how I'm going to be monitored. I'm glad I went to the best, but now I feel like I should have found someone local who I can follow-up with. But maybe I shouldn't worry, because now I have Lyme and I'm sure my LLMD will keep me busy enough with abx and tests 😉

I'm still in shock that I have Lyme disease. Although I had joked in the past that I “wanted” it to explain things, it's still mind-boggling and overwhelming. I'm off today to get prescription filled for Minocycline and try to find one of the recommended generics. And to still understand how I have Lyme disease!

Herxing here I come!!!
 
~jen

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[sjess]

Hi Jen,

I can relate to your feeling “unfulfilled” after your visit to see Dr. S. I had those same feelings. No tests and no specific recheck date, so you're not alone. In my case I had a lot of tests done previously by my past doctors and since I wasn't getting the IV, no need for the mycoplasma test. Like you, I am so used to them testing something that I was a bit in :shock:. I still have confidence in him and feel comfortable contacting him whenever I feel the need. I think he just has confidence in the mino working, at least that's my take on it.

Good luck dealing with the Lyme disease. Good thing you had that checked!

[mschmidt]

Jen,

Thanks for the update on your visit with Dr. S–sorry you felt unfulfilled.  My experience was very different but, I went there specifically for the iv's, and he ran all the tests on me.  It's too bad you didn't have those tests done BUT, I'm sure your LLMD will do the tests on you, and I certainly would make sure that discussion takes place at your next visit. 

I'm not at all surprised about your Lyme diagnosis, and am so glad that you found everything out early on so you know exactly what you're dealing with.  Lyme needs to be treated specifically, and mino alone just won't do it.  Like you, I don't remember ever getting bit by a tick but, ticks aren't the only carriers of Lyme disease, and that seems to cause confusion among patients and doctors in the Lyme world.  (and maybe contributes to the debate about it being exclusively a tick-borne illness) 

Welcome to the Lyme club:shock:

Maria

[Conniel7777]

Jen,

 

 Lyme.. well, not surprised… its kind of a relief in a way, right?

I will be ordering the test kit from Igenex before my next visit w/ my AP doc, and will bring it to him so he can sign off on having the blood drawn and getting the results.

 

Like you, I dont want Lyme, but ok.. if I have it, lets uncover it, and then go after it, so this !!&^*(!    SD diagnosis can become nothing more than a bad memory!  ( wait.. how about a bad memory AND a valuable learning experience? I am DETERMINED to take SOMETHING positive away from this )

I know what you mean about feeling “Un-fulfilled”…   I dont have the same AP doc as you– I use Dr. W in New JErsey, and wow.. he is a GREAT doc, but very, very DRY.. not warm and fuzzy… not a hand holder by any means… and the first few visits to him left me feeling like “..and thats IT??”   but now, I am used to him, and hes beginning to grow on me.. 🙂

 

Hey, as long as we get what we need, thats the whole enchilada, isnt it?

Please keep us all informed as to how your lyme treatment goes.. I am 99% sure I will be walking that SAME ROAD very soon….

 

Your friend,

 

 Connie   >^..^<       CATZ RULE! 

[Maz]

Hi Jen,

You can add me to the list of the “not surprised you have Lyme,” club! You have quite a few bands there which is probably a good sign, really, because the more bands showing, the less likely you are to be too immune-compromised. The body can't produce antibody in some folk with Lyme, because it is such an immune-suppressing set of infections…some of the sickest patients may never test positive (which is why some LLMDs are now using the CD57 test). The fact that you're so early in your disease and you now know what is causing your health issues bodes very well for a swift turnaround. 🙂

Another HUGE bonus…you would not have wanted to have Lyme and passed that on to a new baby. Would highly recommend watching the movie documentary, Under Our Skin (see trailer link below),  because it documents a mother, Elise, with Lyme who had multiple miscarriages due to her having Lyme and another mother who passed it to her son, Jared, who has had a progressive neurological disease since infancy. Lyme is like syphilis…it drills into any body tissue and can cross the placental barrier to the infant. There is huge debate about this, but this is what is known about syphilis is fact (just look at King Henry VIII's wives problems with bearing children)….and Lyme is also a spirochete just like syphilis, but has a much more complicated genetic make-up with over 100 strains of it in the US alone, some more virulent than others.

http://www.snagfilms.com/films/watch/under_our_skin/

So sorry your visit to Dr S was not as expected, but I think Maria is right…most folk who travel to see him, go for the weeklong series of IVs and many very ill. AP is a simple treatment, otherwise, with just minocycline and sometimes the addition of a second antibiotic. This is the irony about it all…it doesn't take a genius doc or a rheumy to prescribe minocycline! Any doc with a license can prescribe a simple antibiotic. The difference is that Dr S believes in infectious causes and instills hope in those who have found no hope elsewhere…and he's probably a bit blase about it, because he's turned around the lives of thousands.

Lyme txs on the other hand are a lot more aggressive, Jen…so worth being prepared for that. We're not talking low dose, pulsed mino, but combination orals in higher daily doses, longer pulses and possibly rounds of IVs. In your case, you may not need IVs, as you're so early on in your disease, but you will likely need to be assessed for coinfections by a good LLMD. Am sure Maria or Kim can, or already have, put you in touch with an LLMD in your neck of the woods. There are now 2 new LLMDs listed for IL, which is fabulous news!!! So, all this may work out to your benefit in the end, as AP docs in IL are very slim on the ground.

Way to go, Jen, getting past all your early fears and looking into all this so quickly! Your self-advocacy will serve you well as you head into Lyme txs now and no doubt all our thoughts are with you that this will all lead to a swift turnaround!

Peace, Maz

[nspiker]

WOW…..another lymie :?.  I think you get the “speedy” award for figuring out things so fast!

The club just keeps growing! 
nancy

[JBJBJB]

[user=1956]sjess[/user] wrote:

I had those same feelings. No tests and no specific recheck date, so you're not alone.

I truly believe there is a reason why he did not run a lot of tests. I believe he is trying to save money for the patients, especially a lot of patients' insurances do not cover out of network fees. His nurse told me to bring all my recent blood tests before I went to see him. She said it would save a lot of money and also Dr. S could learn all the recent tests right away.

I highly recommend those who are going to see him, go to your local rheumy and run some blood tests and bring them with you.  

As for the rescheduling the visit, he told me to go back to see him within a year if I were not feeling any improvement. I actually scheduled an appointment with him in October and then I cancelled it because I wanted to get the Lyme disease tested. After I learned I got Lyme disease I decided not to go and see him because he is not a LLMD.

During the time I could not go to see him, he'd send prescriptions and replied my emails within two days. He is very caring and really trying to help me out. I had two IV treatments done at home with his help. I cannot thank him enough.

JB

 

 

 

 

 

[carries]

Jen, maybe you can have your RA dr or primary dr run the tests for you! That way you have a baseline. You will want that….I compare mine all the time…..even the slightest…most tiniest improvements give me so much positive feelings and optimism.

[Wayne]

Hi Maz,

I know this may sound silly, but have read so many posts and don't know yet what LLMD is. I'm guessing a Dr of some sort. My Dr D is treating me for the lyme infection she suspects as I have spent heaps of time in the bush along with multipul tick encounters, but of cause there is no test here in Aussie land for lyme.

Hope you don't mind – LLMD?

Cheers Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[nspiker]

Hi Wayne, yep, you're right. 

LLMD is lyme literate doctor.  That's great you found a doc in Aussie land that clinically diagnosed you with lyme, and is knowledgeable about treatment.

nancy

[Maz]

[user=1894]Wayne[/user] wrote:

I know this may sound silly, but have read so many posts and don't know yet what LLMD is. I'm guessing a Dr of some sort. My Dr D is treating me for the lyme infection she suspects as I have spent heaps of time in the bush along with multipul tick encounters, but of cause there is no test here in Aussie land for lyme.

Hope you don't mind – LLMD?

Hi Wayne,

Thanks, Nancy, for helping out! Yes, LLMD = Lyme Literate MD. A Lyme Literate physician is one who adheres to the rationale that Lyme has a chronic form and comes with associated tickborne infections, understanding its complex, chronic nature…and will treat for it, for as long as it takes.

Lyme really isn't the correct term for borreliosis…it was just a term that was coined because Lyme was first uncovered in a small town in Lyme, Connecticut, where an inordinately large cluster of folk starting coming down with a wide array of rheumatological, neurological, cardiac, etc problems….mostly children with JRA and adults with RA, but other AI diseases, too. However, borreliosis has been around for millenia…it's a very primitive organism. This begs the question…why so many cases of it today? Lots of theories abound…previously, people were simply undiagnosed and didn't know what it was, people are more mobile nowadays, humans are encroaching on natural habitats, global warming, more virulent strains evolving…you get the picture. Of course, there are all the conspiracy theories that claim that the borrelia organism has been tampered with in biological warfare facilities. “Plum Island and Lyme disease” can be googled for more info on this. The same has been argued for mycoplasma, too…that it has been genetically tampererd with to become more virulent…for instance, mycoplasma fermentens (otherwise known as mycoplasma “incognitus,” which makes it sound like they really don't know what it is).

Since the mid 70s since borreliosis was uncovered in the town of Lyme, it has caused a firestorm of debate within the medical community that has led to an all-out political war between infectious diseases doctors belonging Infectious Diseases Society of America (IDSA) who has drawn up these horribly restrictive treatment guidelines (saying Lyme is easy to diagnose and treat) and another group of doctors, LLMDs (affiliated with the Intl. Lyme and Assocated Diseases Society or ILADS, for short).

For a full 101 on the history and politics of Lyme, this is a good primer:

http://www.myleftnutmeg.com/diary/8493/

With over 100 different strains in the US and over 300 worldwide, it's no wonder that no one test has been devised to definitively identify every type and sub-type. Added to which, ticks pass more than just borreliosis. Whatever they feed on during their lifespan in the wild, it is possible for these infections to be passed to a human host. I came across this link last night that was rather interesting, Wayne, as it lists labs all over the world that may test for mycoplasma and other diseases, like Lyme and Rickettsial infections. Here are the ones listed for Auz and I half wonder if the second lab may test for the Auz version of borreliosis…maybe Lynnie will know or could find out?:

http://www.thepowerhour.com/news/mycoplasma_testing.htm

Australia

Australian Biologics Testing Services
6th Floor Fayworth House
383 Pitt Street
Sydney NSW 2000, Australia
Tel: 61.2.9283.0807
Fax: 61.2.9283.0910
E-mail: mailto:austbio@mpx.com.au

Australian Rickettsial Reference Laboratory

Director and founder: Dr Stephen R. Graves
The Geelong Hospital, Barwon Health, Bellarine
St, Geelong VIC 3220, Australia
Tel.: +61.3.5226.7552
Fax: +61.3.5226.7940
Email: stepheng@barwonhealth.org.au
Website: http://www.barwonhealth.org.au/arrl/home.html

Sorry for the lengthy reply, but thought others may be interested in these links, too. 😉

Peace, Maz

[lynnie_sydney]

Here are the ones listed for Auz and I half wonder if the second lab may test for the Auz version of borreliosis…maybe Lynnie will know or could find out?:

Wayne/Maz – I seem to remember from the Aussie Lyme online group I check in with from time to time (AussieLyme@yahoogroups.com.au) that Australian Biologics is the lab most often mentioned for testing.

As you are seeing Dr D shortly, questions about lab testing, why/why not etc and what strains they think you may have would all probably be useful on your list of questions. I'm not sure whether the Lyme label she and LW use is specific for Lyme boreliosis. I do know that both she and LW believe there are other vectors apart from ticks (mosquitoes for instance) that we are infected by and that Rickettsia is one infection here that is often mentioned by Dr D and that it is different to the Ricekettsia strain in Africa, much less virulent. I also know from Dr D, that she works from time to time with a researcher at Newcastle University in terms of testing certain hypotheses. And this is a recent quote from the aussie lyme group site regarding a researcher at Newcastle Uni that I found intriguing because I wonder if it's the same researcher:  

My meeting with professor roberts from newcastle uni went well, he has beleived for years that rickettsia/ chlymidiae borrelia is the root of chronic fatigue/
me and other diseases.he looked at my bloods and said that i also have anaplasma phagocytophila + common rickettsia he said this should only be in the states but then concluded it is obviously here so he is setting some new tests up now also he is going to start pcr tests for borrelia in newcastle uni so he needs
ticks now!

For me what all this seems to mean is that we are in the very early stages of recognising certain infectious causes here, that there are few if any standard tests that exist. You will find no LLMD's as such here – Dr D and LW are the closest that exist. And Dr D does not believe in the high dose abx combos because I have asked her. Thst may partly be to do with the different strains of infection that we have here. She DOES believe in the abx combos, but smaller doses and with dietary measures and appropriate supplements. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[luvmywonderfulkids]

Jen,

So glad to hear about Ida Grove but I know exactly how you are feeling — I felt the same way after our trip to CT to see Dr. J — I was no smarter just poorer — lol. Ryan is having a lot of problems with foggy brain right now. He said something is different in his brain now so I am very anxious about that.

Sue

[Kim]

Good luck with your Lyme treatment, Jen.  You're on the right track.

Take care…..kim

[PetRescue]

OK-this is the weirdest thing ever. If someone doesn't believe in coincidence, hear me out. So, my husband was in our basement on tuesday and came up with a tick that he had pulled off his back, but had not bit him yet. Creepy, right? It gets better…last night I was watching a movie after dinner and went to pull my hair back and felt a bump on my scalp. It was kind of big, but I thought it was just a scab or something. I'm touching it and pull it off and it is a TICK! Seriously! Who gets bitten by a tick AFTER they are diagnosed with Lyme?!?!

Jess-glad to hear I'm not alone. I know that JB is right. He is just careful about money/tests and he has so much confidence in AP that he doesn't need to test. My only issue with that is that he isn't so well-versed on Lyme, so maybe it includes other things as well (like diet, supplements, pH, etc).  It was funny to talk to him about Dr. Mercola and his new approach though. He really is a gem and I don't mean to sound ungrateful, because I'm not at all. He is an amazing AP doctor I am sure. I just am not a doctor and was looking for a doctor to kind of manage my tests, treatments, etc. I have full confidence in him treating SD or RA, I'm just “spoiled” to have tests run for everything. Maybe that's the problem with exorbitant healthcare costs in the US 😕

Maria-I change my mind, I don't want Lyme anymore. :blush: I'm looking for some more guidance with regards to treatment and docs, so let me know who you're seeing!

Connie-yep, get the test. It sucks we have it, but better to know and be treated than suffer eventually from it's ramifications. We can go thru treatment together 🙂

Maz-so there's actually some silver lining in this whole ordeal? I know that I am super lucky to have caught everything so darn early. Instead of cursing my PCP who found it, I'm lucky to be aware now instead of down the road. I didn't know it was good to have more bands showing. I'm hoping my immune system can beat all the bugs and even possibly get stronger thanks to everyone's passion for getting better (and sharing it with unknowledgeble folk like me). Yes, I would have been horrified to pass it to a baby-and I do worry about my son. He has some weird symptoms (horrible night sweats), so I'm going to get him tested as well. I hope he is not positive.

Are you trying to scare me with treatment? Just kidding. I am ready for it. So far so good on Mino (granted it's only day three), but I want to kick it up a little. I'm hoping you're right Maz and that this diagnosis will actually work in my favor. I'm sure I won't be complaining one bit about abx or labs once the LLMD is done with me. I am so thankful that I now know what I'm dealing with. I remember after the miscarriages I had asked God why? Well, seems he answered me, just not with what I expected.

Nancy-the “speedy” award should go to everyone here who pushed me in the right direction. So many things I never would have even known and now I'm going to get better. Hear that Lyme spirochetes…you're history!

JB-Thanks for reminding me about Dr.S's confidence. He is a great AP doctor and I would recommend him to anyone seeking out AP.

Carrie-thanks for the recommendations. I was thinking of that before I went, but to be honest, I never really want to see another “PCP” again. Of course I know that at some point in my life I'll have to seek allopathic care for something, but I'm sticking to DO's from now on. Luckily my OB/GYN is a DO, now I'll have a LLMD, and I'll sacrifice bloodwork to not see another close-minded doctor again.

Sue-maybe you should try and see a different LLMD. I know Kim recommended hers, has Ryan made progress in his Lyme treatment? Brain fog seems pretty common with Lyme, and it seems to me that Lyme needs to get better first. I know it's so confusing, but maybe you could call her LLMD and see what they say.

Kim-Thanks! Good luck to you too! Here's to remission…

~jen

PS…What should I do with my tick friend from last night? Right now he's in a plastic baggie. Any reason to keep him? Or can I quash him with a hammer? :roll-laugh:

[Author]

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