LymeNet Flash: Seeing LLMD in am and quite mixed!

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Posted by cjnelson (Member # 12928) on :

I found a LLMD and am so mixed right now I cannot stand it!

I didnt sleep well at all last night. I am so afraid that once again I will be hit with the

same ol same ol on one hand and afraid that he will verify LYME at the same time. I consider

myself a strong woman, especially after all I have endured these past years. But this is a

terrible feeling I am experiencing.

8 years is a long time as many of you know being told it is all in your head and psychosomatic.

I have seen 3 Neuros, 2 Internests, 4 ENT's, 3 maxofacial surgeons, 1 Gastrointestinal, 2 Psychiatrists/Counselors, 1 cardiologist, 2 Chiropractors, 1 Physical Therapist, 1 GFP, 1 walk in clinic, been to the ER over 10 times, 2 eye drs, ;

had x-rays, MRI's, Bone Scan, EKG's, every blood work study (except LYME!!!!), vertigo testing, GI series, exploratory surgery on my jaw, Brain scans, CT's, muscle spasm testing (dont remember what it is called!);

steroid injections, anti depressants, NSAID's, muscle relaxers, antidepressants, anxiety medications, beta blockers, pain medication, antidepressants, did I mention antidepressants??? [bonk]

I am truly anxious and excited then anxious then excited again....does that make any sense at all?

What if he actually says it isnt Lyme? What if I have hit another dead end road?

It all "fits"...from the bulls eye rash to the symptoms down the line. But what if he says it

isnt? I dont know if I can handle that anymore.

Sorry to [puke]

all over the screen but I really needed to get this out on virtual paper!

Instead of inside of me... [dizzy]

[ 06. September 2007, 12:37 AM: Message edited by: cjnelson ]

Posted by Aniek (Member # 5374) on :

Good luck today! I hope you find everything you need in this appointment. It sounds like you are on the right track.

Posted by AliG (Member # 9734) on :

quote:
Originally posted by cjnelson:

It all "fits"...from the bulls eye rash to the symptoms down the line.

You said you're going to an LLMD. I do believe that you have nothing to fear.

I will say that what you're feeling right now is a perfectly normal response to "8 years is a long time as many of you know being told it is all in your head and psychosomatic".

That's a phenomenon that LLMDs often see the psychological damage of. I packed up all my half bottles of supplements, my books on Alternative Medicine, Nutritional Healing, Vitamins & Herbal Remedies. They filled a good sized suitcase.

I actually brought all that with me because he was my last hope and if he were to tell me I "don't look sick enough" (like the IDiot just did), this time I would be prepared with an explanation.

I guess it was fortunate that he insisted I go at 8am. After leaving at 6:45am (I don't do mornings!)& getting horribly lost on the way there, I believe I "looked" pretty sick.

The IDiot's ignorance, in making that remark, REALLY ticked me off after I had deliberatly made my appt for 2 pm, knowing that I needed to leave myself about 5 hrs to allow for breaks in trying to make myself presentable.

LLMDs see desperate, misDxd & misTxd (more ways than with medicine) quite often. It's actually very common and patients like this are the ones who usually seek them out.

You will feel SO much better after you actually go!! [Big Grin]

Ali

PS- I actually told my DH in the am (when he asked about the suitcase) that if this Dr told me I was fine, I was going straight to check myself into a psychiatric hospital because I couldn't take this anymore. [lol]

I can laugh now, but that thought wasn't really that far back in my mind. I'm sure you know exactly how I was feeling. [Wink]

Posted by Lymetoo (Member # 743) on :

I do hope you got this name from a lyme patient!!!!!!

Let us know how it went!

Posted by AliG (Member # 9734) on :

CJ said she was seeing LLMD in am.

Hey CJ how'd it go?

Well, I hope! [Big Grin]

Posted by CaliforniaLyme (Member # 7136) on :

?????

If the person turned out not to be
a LLMD don't panic!!!

Hope it went ok!!!!!!!!!!!!!!!!!

Posted by joalo (Member # 12752) on :

Is this doctor a LLMD? You didn't say in your post. I hope it went well. Please update us!!

Posted by ByronSBell 2007 (Member # 11496) on :

A doctor outside of nashville, wish I would have known this, good 5 hour drive where I am going

Posted by cjnelson (Member # 12928) on :

its tomorrow am....LOL! Thanks for the support! Yes I have been told he is a LLMD

and yes he spoke at the Middle TN Lyme Group recently. I sure hope I am picking wise!

Very scary!

And I agree with previous post, I have already spoken teh words...if he says its all in my head

i am going straight to check myself in too! Will let you all know tomorrow eve! [Eek!]

Posted by Lymetoo (Member # 743) on :

If he was recommended by a support group, you'll be fine!

Posted by bettyg (Member # 6147) on :

cj, in my newbie package, please print off 1ST LLMD APPT. WHAT TO DO. best wishes! [group hug]

Posted by GardenLymer (Member # 6008) on :

cj - Good luck & please let us know - Nashville area needs a good LLMD. I'm 50 miles SW of Nashville. As far as I know, he must be new in area. Let me know if u ever need a place to rest during your trip from knoxville. I know for myself, traveling is totally exhausting, not to mention expensive. Hoping u find a good one for all of us Tennesseans! ~Cindy~

Posted by Ellie K (Member # 12056) on :

I'm sorry you're feeling so anxious; it is perfectly understandable considering how high the stakes are for this one appointment.

I had been sick for less than a year when I saw my LLMD, but I too was terrified. I had learned to manage my expectations when seeing doctors after having been disappointed so many times.

Whenever I go see a doctor, I have to take 5 minutes beforehand to "put my thick skin on." It is my special ritual in self-protection.

I do think things will turn out well, though. Make sure to let us know how it went!

Posted by Alias24 (Member # 9365) on :

cjnelson:

You have a Private Message from me, please check in "my profile".

Thanks.

Posted by cjnelson (Member # 12928) on :

I posted this elsewhere but thought it a good idea to add to this thread! Thanks for all the

support! [Smile]

quote:
It went ok. I wasnt jumping for joy. He was willing to say he agreed with LYME as high

probability as well but really wanted to investigate other areas which is fine but I have

already been down these roads. So I did indulge him.

He wanted to start me out on supplements then see where I was. I pretty much had to insist my

way through getting rx. I understood where he was coming from to a degree so we met in the middle.

He wasnt refusing to treat me with abx, he stated he wanted to boost my immune system first

then go into it next month. I simply stated that I wanted a cure for this and as long as my body was fighting this my immune system would

continue to be supressed. He agreed that but was hoping to boost it up as much as he could over the next month in order to prep.

I was simply concerned that even after that he would say, especially if I had improvement from

the boosting of immune system, lets stick with this and see where it takes us. NOT going down

that path! Treat me now! If you really think it is Lyme too then lets get moving!

He wanted to start oral. I disagreed but decided to meet him in the middle. He stated we may have

to increase or move to IV but he thinks I might respond well to oral. He also wants to see if co-infections come back in, which I also agree with.

So he started me on a diet, no wheat, etc and supplements of probiotics: Florastor & GI

Protocol 1- Multi Probiotic, Adrenogen for adrenal function, and UltraInflamX for inflamation.

I will do this regimen for 2 weeks to get yeast in balance then start abx stair stepped for increase:

Ceftin 500 mg 1 per day 1 week then increase to 2 per day 2nd week.

2nd week add Biaxin XL 500mg 1 per day 1 week, then increase to 2 per day 2nd week.

He started with 2 month supply of each.

We will do a phone consult in 2 weeks and schedule follow up in a month.

Blood tests:
Complete Lyme Panel IG
CoInfectoin IG
CBC
Lipids
Bun
Nutritional Levels

What do you think based on LLMD experiences?

Posted by Aniek (Member # 5374) on :

Lots of LLMDs want to start with boosting the immune system first. Lyme treatment is really hard on the system. As long as you aren't a very recent infection, then it is sometimes worth delaying treatment for a few weeks.

Many LLMDs do not start people off on IV. If you don't need the IV, why get it? Certain oral abx also help determine if you have coinfections, because they will cause coinfection herxes.

Posted by Parisa (Member # 10526) on :

It looks good that he really wants to get the probiotics going before you really start the antibiotics. You don't want a candida problem (if you don't already have one) on top of everything else.

The no wheat diet is also good.

Sounds to me like he's going to treat you. He just wants you started on some other things at the same time which might be very important.

Diet, probiotics, etc. are all important. Also, some people do fine on orals. Some need to start on orals first or they'll have serious herxes because of high titers.

Posted by bettyg (Member # 6147) on :

cj, thx for update on your visit! [group hug]

Posted by AliG (Member # 9734) on :

So far, from what you've stated, it sounds like you have a good LLMD.

It sounds like he's proceeding as he should and if you really do have Lyme, which it would seem you do, he's not likely to try to tell you otherwise.

We tend to get very defensive after being abused by ducks. Sometimes it takes a little bit before we actually trust the LLMDs too. [group hug]

I hope you start seeing some improvement soon. [Smile]

Ali

PS- Have you had any other doctors refer to Lyme as a "high-probability"? I got that from mine on first visit too. My labs are now starting to show seroconversion after a year of Tx.

That means that as both LLMD and I suspected, we now have some proof that the "high probability" is indeed true.

Just keep the faith, you'll get there too. [Smile]

PPS- I presented with heavy CNS symptoms & thus far, only oral ABX and Babesia Tx.

Many LLMDs wait for co-infection tests back before Txing because the COs need to be Txd first. [Wink]

Posted by cjnelson (Member # 12928) on :

alia, no, no one has ever said "high probability". This is the first real direction I have had in 8 years!

I cant tell you ALL how invaluable you are to me. I have learned more in the past few weeks than I have in years.

For the first time, as distrubing as it all can be

seeing the struggles and long term issues, I have some true hope. I know its going to be a

long road but if going through this can get me even remotely close to where and who I know I am

deep inside of me, then I am open to the ride. Of course I may be screameing otherwise real soon.

You ahve my permission to quote me back on thsi one in the future [Big Grin]

I may need it one day!