Just got back from my first LLMD appointment..

[tbird2340]

Ok, so I just got back from my first appt with Dr. S in Hermitage.. He does believe that I have Lyme.. Here are a few things that I remember that scare/bother me..

• I have been DX with Lyme!!![/*:1bn995sh]
• He wants me to get an MRI! This scares me the most.. He had me stand up and close my eyes with my arms to the side.. One at a time I had to take my finger and touch the point of my nose.. Well when I did it with my left hand I guess I didn't land dead on… He said the MRI was just a standard test and he doesn't think I have tumors or anything but I feel sick about it!![/*:1bn995sh]
• He mentioned I have an enlarged spleen!? I don't even remember now what we are doing about it.. Maybe that's what some of the bloodwork are for?[/*:1bn995sh]
• He checked out my knees as I said my right was the thing that bothered me most and that I thought it looked a bit swollen.. He said I have cysts on BOTH knees.. The “cysts” bothers me but maybe that's normal for people with RA?[/*:1bn995sh]
• He ordered an additional test from Igenex that will cost $100. I can't remember the name of it (doplar?) but it was to check something on one of my results.. They still have the blood so that was good.[/*:1bn995sh]
• He wants me to increase my mino to 100mg 2x every day! This also scared me.. Not sure why as I never really did herx.. I guess one thing that bothered me was that he said he thought that pulsing was rubbish..[/*:1bn995sh]

I got a lot of blood work to get done along with the MRI and then I go back to see him in 3 months.. All of this is hitting me like a ton of bricks and I feel like I'm going to PUKE!!

[Donna RA]

Tom,

When I first saw Dr S, he ordered an MRI, and EKG and more blood work.  I think the most important thing is, that he is looking hard at all your symptoms, and starting at ground zero.  He is probably not looking at this as if it's RA, using the low dosing we are accoustomed to.  He did switch me right off to Doxy though, that is one difference, and daily at that. After the inital visit, I was freaked out too.  I got used to it quickly though, and got right into the swing of it.  My MRI came back fine, and so did the EKG. I also have a cyst on one of my knees, not sure what that is about.  I also had the enlarged spleen, most likely due to the infection, which has come down in size, and he credits using Olive leaf.  Did he request that you get some of that? It will take some time, but you will get used to the idea.  My best advice is to read some of the books he tells about, and get to know about the co infections, so you can make certain you are tested, and treating for them. 

Let me know if I can help in some way,

Donna RA and Lyme

[Parisa]

Tom,

The close your eye test is to check for balance and possible Lyme neurological involvement.  The MRI I suppose is to be cautious.  My husband flunked the closed eye test also with his LLMD.  Treatment has resolved this problem.

Spleen enlargement can be due to Babesia.  It's important to treat Babesia or else the Lyme treatment won't be effective.

As far as the increase in mino, well, I hate to break it to you but Lyme treatment is an antibiotic protocol but not the slow and low protocol AP used here.  Low and slow doesn't work for most strains of borrelia.

I know this all seems very overwhelming compared to an AP protocol with one low dose drug.  Let the new information sink in and then grab on to the opportunity to really get at the root of your problem.

[Maz]

Tom, thanks so much for checking in with your post Dr S (the LLMD) appt news. The news doesn't surprise me and just glad you followed through and will now be on a combo approach to target your infections. As Parisa already mentioned, an enlarged spleen is usually the result of babesia, which is a red blood cell parasite, a protozoal piroplasm, much like malaria. Loves the spleen, because there is a rich supply of red blood cells in this organ.

Don't worry about the imaging tests and labs…I know it's nervewracking, but he's just getting baselines for you. This is a very good thing!

Is the further IGeneX testing the Band 31 etiope test? If you were IND on that band, he may just be wanting to see that it's not cross-reacting with a virus and to confirm that band for you.

The knee cysts may be Baker's cysts…very common in RA knees. Cysts are like nodules and likely the body trying to encapsulate the infection. Lyme LOVES knees, as I've discovered. They can be the hardest thing to shake with this whole Lyme/RA mess as the joints are big and the infections deeply buried.

The initial bloodwork I had done was pretty extensive, too. Had masses of vials taken, but it was to rule out other potentials that may be complicating things. Again…a very good thing!

It's great you have Donna to compare notes with, Tom. Donna, you're a treaure. 🙂 She's a few steps ahead of the game and I'm sure can reassure you about Dr S's MO and various protocols he uses.

You're going to be okay, Tom…just think how worried you were about not herxing…well, LLMDs like to see a good herx, because this is how they gauge success of tx. So, you're likely going to see some herxing, but this is a good thing, too, right? 😉

Peace, Maz

 

[mschmidt]

Tom,

Just wanted to add some support as well.  I was mortified after my initial LLMD visit because he wanted me on Rocephin for 8 months via a picc line, as well as get tested for co-infections and CD-57.  I didn't do any of that, and told him to start me on orals and if they failed, I'd agree to the picc line.  As far as the co-infections panel, I didn't do that either, and told him he had enough clinical information from me to assume I had certain co-infections.  He was going to treat me for them anyway so, I didn't bother shelling out the $900 for them.  (his initial office visit was $900)

I also had the close your eye and touch your nose, as well as try to balance on one foot (neurotransmitter test), and I failed both miserably.  I am able to both without a problem now, and that was tested in December.  I agree with Maz, Lyme LOVES big joints, and the it has an affinity to the knees.  My hips and knees felt like someone poured cement in them for a while (before I was dxd w/Lyme), and beyond swollen.  I was 100 lbs with huge knees–pretty:shock:  I had an 2 MRI's, a complete bone scan of my entire body, CAT scan, EKG, EEG, PFT, Bone marrow aspiration, and pints of blood taken every month for 10 months.  It's scarey stuff but, you WILL get through it!

I'm sorry this feels so overwhelming right now–all of us Lymmies can relate to that feeling, that's for sure.  All I can tell you is that at some point, after starting the Lyme protocol, you will feel better.  It's AMAZING the things I'm able to do after less than a year on the Lyme abx, that I absolutely could not do before then.  I'm running, walking, doing the elliptical, stairs, biking, and lifting weights 5-6x/week.  I could barely walk across the room for almost a year before I was diagnosed, and  could not even bear the pain in my knees–my husband used to have to carry me to an epsom salt bath, just so I had some relief from the swelling and pain.  If I can get better, you can get better.

Sounds like your LLMD is doing all the right tests, and will get to the bottom of what is going on in your body.  I wish you the best of luck, and know that we're all here to help you whenever you need us.

Maria

[tbird2340]

Thanks for the replies everyone. I truly don't know what I'd do without this site.. It is priceless..

Going to bed now but I will reply with some more questions tomorrow!

😀

[Kim]

Hi Tom,

Hope you had a good night's sleep and have had a few hours to digest all of this. 😕  Look at it this way…….now you know what you've got and what you have to do, so just like when you started AP, learn all you can to avoid the shock factor and dig in.

If you haven't read, Cure Unknown by Pamela Weintraub, this would be a good time.  The stories in there will make you WANT to be first in line for treatment. 😉  You will be taking a slew of different abx, at shockingly high doses, on a complicated rotating schedule that will make your head spin, so get ready to man-up! :roll-laugh:

The battery of tests are common so try not to worry about that.  I've had the bakers cysts on both knees that seem to flare mostly with diet ~ sugar and simple carbs are poison to me.

As you know, I'm on Round 2 of Lyme tx  :headbang::headbang::headbang: and it is NOT fun, but what are my choices………..letting the ketes take over my body again, no way!

Hang in there, Tom.

Take care……kim

p.s.  the kids are adorable 😉

[tbird2340]

[user=41]Donna RA[/user] wrote:

Tom,

When I first saw Dr S, he ordered an MRI, and EKG and more blood work.  I think the most important thing is, that he is looking hard at all your symptoms, and starting at ground zero.  He is probably not looking at this as if it's RA, using the low dosing we are accoustomed to.  He did switch me right off to Doxy though, that is one difference, and daily at that. After the inital visit, I was freaked out too.  I got used to it quickly though, and got right into the swing of it.  My MRI came back fine, and so did the EKG. I also have a cyst on one of my knees, not sure what that is about.  I also had the enlarged spleen, most likely due to the infection, which has come down in size, and he credits using Olive leaf.  Did he request that you get some of that? It will take some time, but you will get used to the idea.  My best advice is to read some of the books he tells about, and get to know about the co infections, so you can make certain you are tested, and treating for them. 

Let me know if I can help in some way,

Donna RA and Lyme

Donna, all he has me on now is the Mino 100mg twice daily (one after breakfast and one after dinner).. I have been used to taking them on an empty stomach and read here that was the way to take it so not sure why he says after. He did ask if I was taking probiotics and I told him yes but had no idea what kind.. He said to get a specific kind (have paper at home) and to take 2 a night..

That is it so far.. No recommendations for olive leaf or anything else, really. Maybe he will go over that stuff at my next appt in 3 months when he has all my labs..

He didn't suggest any books either. Do you have any suggestions? I hate hate HATE reading but I'd like to know more about Lyme.

Thanks Donna!

[user=13]Parisa[/user] wrote:

As far as the increase in mino, well, I hate to break it to you but Lyme treatment is an antibiotic protocol but not the slow and low protocol AP used here.  Low and slow doesn't work for most strains of borrelia.

I know this all seems very overwhelming compared to an AP protocol with one low dose drug.  Let the new information sink in and then grab on to the opportunity to really get at the root of your problem.

Now that others have said that is normal I am totally fine with the increase in Mino.. I was just nervous at first because there is always that thought in your mind “Does this guy know what he's talking about..”.

Thanks for putting my mind at ease!

[user=27]Maz[/user] wrote:

Is the further IGeneX testing the Band 31 etiope test? If you were IND on that band, he may just be wanting to see that it's not cross-reacting with a virus and to confirm that band for you. 

Yes, that's the name of it.. Etiope.. Not sure what he's running it on and I can't remember the reason.. I was just glad they still had my blood so I didn't have to shell out even more then the $100 to get it done.

[tbird2340]

Few questions..

1. He asked if I ever had Mono.. I said not that I know of.. I am constantly tired but I know that is a symptom of RA as well.. Is mono and lyme often together?[/*:25832dlt]
2. Now that I have been DX'd with Lyme.. What does that mean for my RA? I mean, I guess they are both just DX's but what does that mean for me? I guess the fact that I'm on ABX and not the standard RA drugs makes the transition to Lyme treatment easy..
   [/*:25832dlt]
3. Goiter… What is the deal with this? My friends daughter was diagnosed with JRA which has now turned to Lyme (also goes to Dr. S) and she said her goiter is flaring up.. Should I be worried about getting one of those?
   [/*:25832dlt]

That's it for now!

Thanks! 😀

[mschmidt]

Tbird,

Did your doctor test your Epstein Barr Titre?  This is the herpes virus responsible for mononucleosis, which can cause severe fatigue and tiredness.  A lot of these old infections can get re-activated with Lyme disease.    I have Lyme and SD, and my EB virus titre was off the charts high.  (I did have mono in college but, my titre should NOT be that high just for being exposed to it 15 years ago).  Strep titre also seems to be high with people who have Lyme disease.  Where you tested for that?

Being diagnosed with Lyme means that you will be using antibiotics specifically to target borreolis and any co-infections.

As far as goiter, Lyme in general can mess up your thyroid , many times people are hypothyroid but, can flucuate between hypo and hyper at times.  And, because you have autoimmunity with RA, it can also mess with your thyroid and hormones.

Maria

[tbird2340]

Thanks Maria for the reply and info.. I honestly don't know what all tests he ordered.. I know A LOT of bloodwork.. I will scan what I'm going to get tested after lunch.

[tbird2340]

Here are the tests I have to get done:

[Maz]

[user=851]tbird2340[/user] wrote:

Here are the tests I have to get done:

Hi Tom,

These are GREAT! He's testing you for everything. 😀 Coinfections, candida, Vit D, viruses, H Pylori, RF and anti-CCP, complete blood count and blood chemistry panel. The only things I don't see there that I'd want done are SED and CRP, as well as B12….possibly also chlamydia pneumoniae.

My LLMD also ran quite a few routine blood labs to rule out other things, like Hep C and I also have C3D run every month, which is a measure of immune complexes (shows how hard body is fighting infection as it measures bound antibodies and antigens). Just goes to show, every LLMD has their own MO.

Bear in mind, the coinfection testing is just as bad as Lyme testing…but it's not a bad idea to have standard tests done if your insurance covers them, as you never know what may show up to aid in diagnosis.

Looks like he's covering some good corners for you, Tom. 🙂

Peace, Maz

[Trudi]

[user=851]tbird2340[/user] wrote:

He didn't suggest any books either. Do you have any suggestions? I hate hate HATE reading but I'd like to know more about Lyme.

Hi Tom–

I am just about finished reading a book entitled “Insights into Lyme Disease Treatments” by Connie Strasheim.  13 doctors were interviewed regarding their treatments of Lyme (two from Germany).  Each doctor gets a chapter.  I highly recommend this book for its wealth of information.  In many ways it has reassured me that I will get better and that my doctor's approach is right for me!!  You would think there would be a lot of overlap, but there isn't–very different and unique practitioners out there!!

http://www.lymebook.com/insights-lyme-treatment-strasheim-book

BTW, I bought my copy from Amazon for $35.

I'm sorry that your diagnosis is Lyme, but at least you know what you are now dealing with so you can start in earnest with your treatment.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[tbird2340]

Thanks Trudi! I'll see if it's at my library..

Not sure if these got overlooked by my other posts but if anyone could answer them or provide insight I would greatly appreciate it!

1. He asked if I ever had Mono.. I said not that I know of.. I am constantly tired but I know that is a symptom of RA as well.. Is mono and lyme often together?[/*:1n1bzt6a]
2. Now that I have been DX'd with Lyme.. What does that mean for my RA? I mean, I guess they are both just DX's but what does that mean for me? I guess the fact that I'm on ABX and not the standard RA drugs makes the transition to Lyme treatment easy..
   [/*:1n1bzt6a]
3. Goiter… What is the deal with this? My friends daughter was diagnosed with JRA which has now turned to Lyme (also goes to Dr. S) and she said her goiter is flaring up.. Should I be worried about getting one of those? [/*:1n1bzt6a]

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