update !! I have an appt. with Lyme Dr.

[drsdonthelp]

I know that I cannot use names on the forum, but I wanted to let everyone know that I have an appt. set for Oct. 7th. I had to call around becuase 4 out of the 5 I checked with do not take insurance. The last one I called, did.

I am nervous , anxious and ready to find out if this is lyme I am dealing with. I did however, see my neuro. on Tuesday, and the MRI of the Orbits did not show anything, so he said for the 100th time (exaggerated) its not ms, but then in the next breath, asked me if I ever had vision loss. Ummmm, yeah, in 2007 and again in 2008, until this day. He said, well, if it happens again, we will do a spinal tap. Ok, see you back in three months!!

Soooooo.... now I have to get my bloodwork results all together, and bring them with me.
Thanks for everything..
Pam

[drsdonthelp]

That is awesome!!! I can't believe you drove 8 hrs. by yourself and to leave at 2 am!! LOL That is determination!!!  Love it.

I am so looking forward to this appt. This particular dr. is well known and I am excited to meet him. I hope he can help me. I can't take the not knowing anymore!

Pam

[Ness78]

Yes the cancellation list is great.  I would still be in limbo....I hate limbo. I jumped in my car at 2 am and drove myself 8 hours across the US/Canada border.  I was a mad woman on a mission. My friends thought I was crazy...I was motivated. October 7th is just around the corner.  I was months from my appointment and on a steady decline.

[drsdonthelp]

Would you believe I was not on a cancellation list? In fact, when I called, the secretary said,"we can get you in next week", I was shocked, and I said, well, I will be coming from 4 hrs. away, and I need to make arrangements first plus get all of my labwork together, so that is why it's not until OCT. 7TH.  I also have been researching this particular dr. every chance I get and he is someone that I think will see the whole picture. I could be wrong, but I have hope.
I do understand what Wonko was saying regarding the insurance, but I am on medicare through ssd and as long as I am not on the Advantage Medicare, they accept mine. I guess i will have to take what I can afford right now, and hope for the best.
Thanks for rooting for me!! LOL
Pam

[Ness78]

I am rooting for you Pam.
I see you have been through H E double hockey stick.
I wish you well.
Did you get on the cancellation list?

[JackieCalifornia]

Most insurance companies (except managed care like Kaiser, perhaps -- I've not had Kaiser coverage myself) will reimburse for an out-of-network doc, just at a lower rate.

I agree with Wonko, but also know that sometimes the lesser of evils is rummaging around in the network for a while to see if a sympathetic doc can be found is what I would do at least initially, esp when money is a significant concern.

[drsdonthelp]

Hi Wonko,
Don't worry, I took it the way I know you intended, and I believe wholeheartedly what you meant. The good news is.... " this particular dr. has a great reputation and he is a president/founder of a  lyme disease project.. I am sure , you will be able to read between the lines. He is well known and he checks for coinfections,,, soooo... I feel good about this. He actually was going to be my first choice, but when ewford told me about Dr. J ,, I tried there first, but I honestly cannot afford it. So,, I tried a couple of other high profile doc.s who also I could not afford... I couldn't remember the doc's name that I am going to go see, so it took me some time to find him again. I am so glad that I did.

thank you , Pam

[wonko]

I notice that in this post, the issue of whether or not an LLMD takes insurance comes up as a factor in selecting a doc.

I can understand how cost must come into the equation of seeking the right doc, but allow me to play devil's advocate here, based on my opinions.  Take what I say with a dose of salt, because I'm jaded due to bad experiences with mainstream, insurance-accepting MD's.

Personally, I actually prefer an LLMD that does not go through insurance.  This is because diagnosing Lyme and associated tick-borne infections can not be done through fast, "black and white" testing.  Instead, it is often necessary to go through a long and detailed patient history, and it is necessary to compile and review any testing the patient went through prior to coming to the LLMD.  Therefore, it is not unusual for the initial appt. with an LLMD to be upwards of 3 hours--Well outside of the 10-15 minutes that insurance-approved appointments take!

Furthermore, I am of the belief that Lyme/co's can be difficult to treat, and specifically that they can require more than the IDSA-recommended duration of treatment.  Most insurance companies limit how much treatment will be covered and this causes more complications with treating chronic Lyme through insured doctors.

While follow-up appts may require less time than the initial appt, it may still take a long time to convey to your LLMD how you are responding to treatment and any other issues that your LLMD needs to know about in order to advance treatment.  I've never had an in-office appt with my LLMD last for less than an hour, and again, that is beyond the length insurance-approved appointments.

Again, I'm jaded here, as I got the "run around" for some time.  It was my experience that mainstream/insured docs wanted to put me through successive standard tests.  Finally, when my insurance had paid for every test under the sun but there was still no clear diagnosis, I was either told that I was depressed, or to "wait and see" (in time increments of 6 months, after which the endless/pointless testing cycle was to resume), or to "pray."  (While there may be a time or place for prayer in a patient's life, I was going to MD's for a diagnosis and for treatment, not for spiritual guidance...)

I'm glad I went through the insurance-approved route first to rule out other conditions.  But for my case I don't know how I could have gotten the individualized attention that enabled my LLMD to make a dx through an insurance-approved appointment format.  Furthermore, I don't know how my LLMD could update my treatment based on progress if we were limited to 10-15 minute follow-ups.

In case I sound too cranky here, I'll emphasize again that seeking an LLMD who works outside of insurance was my choice, and I don't expect that others can or should necessarily agree.  My purpose in posting this was to offer a different point of view.  

Regardless of which/what type of doc you pursue, I hope you find a compassionate individual who can work with you towards better health.

[drsdonthelp]

Hi Jackie, thanks for all of your tremendous help!!! If you are up for a read... take a look at my journal, "My Story".. it is very long, so you will need some time, (that's if you are up for it). I have been through HE11 and back!! It's a wonder and a miracle that I am still alive!

I try to not take too much for granted, because you never know what's next!

Big Hugs,
Pam

[JackieCalifornia]

Wow, you've been through so much!  Good for you for plowing ahead -- I know sometimes I just never want to see another doctor again ever ever ever, but common sense sets in ... heh.

Lyme is a strange creature ... it can and does affect the whole body in different ways at different times, and not the same in different people or in the same person over time.  That's part of what confuses the docs, who don't understand that Lyme is so tricky.  Most diseases are what they are, they progress in a fairly uniform way common to that disease, and the docs treat it and it goes away.  Lyme is sneaky ... that's what helps it survive in the face of our immune systems -- and, it seems, despite most of the medical profession.  (Sometimes being 'cutting edge' just ain't much fun.)

About the numbness, I have no idea ... it is definitely worth telling the LLMD about, because s/he needs to have a complete picture of your situation.  In my situation, I figured out that some of my red, swollen, irritated eyes were related to a co-infection of Lyme, and also to a systemic fungal infection I got from yeast-based probiotics I was taking ... it's a long story.  Fungal infections are, from what I read, often overlooked or dismissed by MDs, so who knows.  But definitely tell the LLMD.

Lots of us here have had tremors and tingles.  Mine generally got better over time, and taking magnesium supplements helped the muscle cramps.  But ask your doc about whether it's okay to take supplements ... lots of docs don't ask, thinking that it doesn't count as 'medicine', but supps truly have effects that should taken into account, imnmo (in my non-medical opinion).

Everybody is different, so just listen to your body and relate all the clues to the doc.  It's a jigsaw puzzle that needs all the pieces to make sense.

Looking forward to hearing how it goes -- !

[drsdonthelp]

Jackie,
LOL, you are right about feeling like going on an audition, I am getting my notes and labwork together (seems like my resume) along with my timeline of symptoms, flares, and tests that I have had done.

I actually have been to so many eye specialists due to my thyroid eye disease. I have seen, my regular opthalmologist, my optic nerve specialist, my eye muscle surgeon, my reconstructive eye surgeon, two different second  opinion eye specialists, and so on...  I definately can say that ALL of my eye specialists are very concerned about me, not just as a patient but as a person. They are the most helpful out of all of my dr.s.

Since I have had my orbital implants and sinus surgery in Feb. I have had a numb nose. Still numb to this very day. I am still blocked up, and had two sinus infections since then. I have read that with lyme, people have experienced a numb nose.  In your opinion,,, could a surgery bring on lyme symptoms? I have had an MRI of my orbits, but there was no mention if the implant was resting on a nerve (that was a thought that I had) . You would think that I would not be getting so many sinus infections since I just had a surgery to alleviate that problem.

I have to update my timeline since other things have come up. I started to get the twitchy thumb again, and just a couple of days ago, my right thumb did a twitch, I was like, "Oh, come on.. not this hand now". But it didn't last.  I have had a cramp in my right foot, that feels like a bone is out of place and I want to crack it to not be painful when I step on it. It's really weird to describe.

My left hand tremor is still going... so far it has been 9 months, it was worse the first 4 months. I have had ice pick eye pain when moving my eyes and it shot to the back of my head.
Some days are not as bad as others.

Thanks for taking the time to help me prepare for this very important appt.
Pam

[JackieCalifornia]

PS I forgot to say, about the vision loss your neuro asked about.  Be sure to tell your LLMD about that as a symptom.  And I forget where I mentioned this recently, but seeing an ophthalmologist (an MD who specializes in eyes) is good every year at least, because they take Lyme seriously, from my experience and from what I hear from others.  I think Wonko chimed in on this point recently too.  Your LLMD may have someone to recommend for eye exams, esp. since you have had vision symptoms.  Mine came and went, but my ophthalmologist was ever watchful, so all is well.  

(I was always so nervous leading up to my LLMD appointments that I would be afraid I wouldn't use my time in the spotlight well, so I'd make a list, starting at least a week or two before the appointment, of my symptoms over time.  Then I would take 2 copies with me, one to hand to the doc, and the other to use as my cheat sheet so I wouldn't forget.

I felt like a Hollywood starlet auditioning for the role of a lifetime ... SO nervous, and SO knowing how much was riding on that appointment.  I tried not to take voluminous notes with me, but to keep it to a single page.  If the doc sidetracked me with a question, then I could go back to my notes to be sure I covered everything I wanted to.  It was still hard to cram a lot into even a 1/2 hour appointment (I think the first one was a full hour), so the notes came in handy and helped me process changes in symptoms and well-being since the last appointment.

Just a thought. Keep us posted!

[drsdonthelp]

Hi Jackie, Thanks!!! I have my fingers crossed too, I am wondering now, what if this is lyme. How expensive can this get?? My insurance covers the doctor, Thank God, but what about the rest of it, The treatment?

[JackieCalifornia]

That's great!  Good for you for persevering.  Fingers all crossed here, that Oct 7th comes swiftly and all goes well.  We'll be right here.