Conflicted

I've been away from this site for a few months because I think I was making myself crazy. Don't get me wrong......I appreciate all the advice I received and still very much appreciate all the advice that's given to anyone who posts here. For a newbie like me - seeing all the posts of all the different stages that people are in, makes me wonder what the best next step is.

I have been advised through this forum to seek out a LLMD, which I have yet to do. Mostly because I can't afford that and secondly, because I've read some bad stories and have had bad stroies emailed to me.

I am SO conflicted as to the status of my Lyme's. I was diagnosed in March, after being bit in November. I delayed treatment for 5 months and only went to the doctor after feeling really bad with the flu. I took Doxy from March to end of May and I get the impression from my primary that I should be cured. Trouble is....I feel like I'm still in a bad way with chronic back pain, shoulder pain and hip pain. Knee's seem to be intermittent, as is neck. I've gained weight because I can't exercise like I used to, due to the joint pain/back pain.

I'm wondering if I'm just feeling old because I'm 44 and I'm supposed to have joint pain or is this darn critter still alive and well. I feel as though my focus is completely flip-flopped. I can't seem to concentrate and retain things like I used to. Not sure if that has anything to do with anything.....but I know that i don't feel like me anymore.

Anybody know where I'm comin from?? I'm going to Ortho tomorrow because my shoulder pain is keeping me from shooting my bow. So basically....all the things I used to do to keep active- have gone to hell. Thoughts anyone?

Pabowhunter,

You need to read all you can and become your own advocate!  Your doctor like most doctors believes what the IDSA says that Lyme is hard to catch and easy to cure.  It is not!  If I were you I would read Pam Weintraub's book Cure Unknown it explains so much of the how and why things are the way they are.  If you are scared to be on abx for longer you could check into herbal treatment.  I'm on the Buhner's protocol, you can read about it in his book Healing Lyme.  You can also asked to have a CD57 level drawn.   Did you have the joint pain like you have now before you were bit?  If you were fit and active and now you are not I would tend to believe it is the LD.  Just my 2 cents!  KO

Nicky D,
I appreciate everything you have said and others who have responded with advice. I want to say this in a way that hopefully does not come across wrong, so don't take any of what I'm about to say personally.

I know that I need to be more of my own advocate and part of my problem is that, in working in healthcare, I'm far too trusting in thinking that any doc I see - really does have my best interest at heart. I believe that.....or used to. I am becoming more and more jaded with docs today. Now....I am getting more and more frustrated because I know that I don't feel well and don't feel like my former self and it seems like the only people who listen...is the group here on this board. My primary probably thinks that I have evolved into to some hypochondriac because i tell him I don't feel better and he doesn't know why. Case in point....just last night - he called to let me know that my recent blodd tests were back and that my Vit D is low and recommended that I take 1000 Vit D and recheck it in 2 months. he asked how I felt, to which I replied..not good and he suggested going to Rheum for my continuing joint pain. No re-check of Lymes....not even calling it Lymes anymore because "I took the Doxy" so I should be cured, right?

He was the main person telling me to avoid LLMD's as they will only prey on me for feeling so badly and have me waste time and money by making me follow-up frequently. Also urged me not to commiserate with folks here as it's easy for me to identify with you all because we're all in the same boat. Not sure if that was implying that we are "those kinds of patients" that feeds off one another's illness or not. There were a few others that told me that LLMD's are not easy to get into because of extended wait times and that the "Consult" is bad enough cost-wise, but subsequent vists rack up quickly.

Since I really don't have the funds to go to a LLMD.....is there any chance that a good ID doc can manage me? Does anyone have any good stories about ID docs being able to manage Lymes??

Bottom line is this......I feel bad and I'm trying to educate myself as much as I can, but it's all so overwhelming to me. The lingo, the protocols, EVERYTHING. I feel like I keep going round in circles, like a dog chasing his tail. Someone had commented on my focus/concentration problems in an earlier post and I had to laugh...wondering if dyslexia is a byproduct because for one reason or another...my typing (which wasn't great before) has turned abysmal, as I am constanly flip-flopping letters as I go.

Let me just say that I don't feel like I'm commiserating with you all......I wouldn't come here if i thought you all didn't offer some good. Seems to be more than my doc has been offering.

pabowhunter, Hi and welcome to the board.

i can give you my story on IDs. i was tested for Lyme after i had a MRI that shows 10 to 15 lesions in my brain. my PCP sent me to a ID. he stated there is no Lyme here. then told me to rule out MS first. then if i didn't have MS and I thought i had lyme he would treat me for 30 days of IVs abx.

i went to a nuero ruled out MS. who also stated i showed positive for new infection of lyme by my test. went back to ID. who stated to my face he didn't think i had lyme and that my test was a false positive. this is my nightmare.

if you have the ability to go to a LLMD. it may be your best bet to get treated properly.


I wish you all the best.

you may want to co your local heath dept. they gave me a list of all drs who have reported lyme in my area and i call each one but as of yet found one that will treat for lyme. as they do not understand the disease. there is only 1 Dr here working with a Dr in Boston to treat my neighbor but he doesn't take my ins.

as for my nic. i have rotties , spoiled rotten dogs..lol

PaBowhunter,

 I should start with a little background, I started having tingling in my fingers that got worse to the point that I went to see a Neuro.  She did a bunch of test including a EMG and CT, she wouldn't run a Lyme test because "I never had a bull's eye rash".  We camped and like the outdoors etc so I had plenty of exposure opportunities.  I didn't know very much about LD at the time, but it was one of the things that came up as a possibility when I searched on tingling extremeties.  My CT showed bulging disc which she said was causing the tingling in both hands and by that time also both feet.  She did the usual PT which didn't help and told me if it got worse I could come back.  Fast forward to 2007 the tingling was much worse and I was having joint pain and other issues.  While I was at my GP for my yearly Pap I mentioned about the tingling and what the Neuro had told me.  She was the one that told me that that couldn't be (tingling on both sides caused by the bulging disc).  She suggested that I have it checked out.  I went back to the Neuro because I thought it would be easier that starting all over with someone else ( and I wanted to tell her what my GP had said).  When I asked her about what my GP had said she finally admitted that it couldn't be from that.  So basically she lied to me.  She again ran all the test except the CT.  She did do another EMG (she does the test so that's $800 for her).  When I insisted she run a LD test she still didn't want to run one, but did.  I had made an appointment with a Rheumy in the mean time.  The day before my appt. I went to get copies of all my test to take to the Rheumy.  I noticed that the LD results were missing.  Her office had to call the lab and I had to wait 3hrs while they located my results.  When the secretary got the fax I knew she was going to say it was Positive and it was.  I only had 1/2 day to read up on LD, but I still knew more about it that the Rheumy.  He was very condescending and told me that it was a false positive!  He told me it couldn't be LD because if I had had it for 7 years I would be much sicker, I never camped in the Northeast (as if Lyme, CT is the only place you can get LD), and I never had a bull's eye rash!  He's the one that gave me the Doxy "Just in Case".  He wanted to do a Bone Scan, when I asked why he said and I quote "to rule out scary things", when I asked if he meant Cancer he said yes.  He had a med student/resident shadowing him that day and he was more interested in explaining my EMG results to him that talking to me!  He basically barked questions at me like "any problems with eyes, ears, nose".   It was a horrible experience, and I am still mad about it (if you couldn't tell).

Alot of people (even those that don't have LD have low Vit D , I had mine checked because of a show that Oprah did, and I'm low too.   The Igenex test are expensive, and your doctor will probably not want to you to have them run the test because they test for more bands (the CDC removed LD specific bands from the testing that is CDC approved), but I've been told that because you are going to pay out of pocket you could have your dentist sign the order form.  Hope this helps, KO  

All good stuff. I appreciate all the feedback from everyone.

Since I am more of the type that avoids medicine at all costs - I like the alternative medicine path. Aside from taking the Doxy recently, I seldom take medicine for anything. It's a very rare occurence for me to even take Tylenol, Advil or Aleve regardless of whatever pain I may be in. I've always been that way. After spending time in the miltary and being injected with all sorts of meds/vaccines that made me sick (yellow fever, plaque etc...) I vowed that I would never put that crap in my body willingly.....short of getting that cortisone shot yesterday in my shoulder.

I will try to track down some of these books that you all have mentioned. I have been reading lots on the web and on this forum, so I understand that knowledge is key here. I heard that the "Under our skin" show will be airing tonight around 8 or 9pm. I saw the trailer and it looks interesting. I'll DVR it, as I will be at a meeting this evening - but look forward to seeing it.

Thanks again to everyone for their words of wisdom. I do really appreciate it.

Oh..and the cymbalta will take the weight off too.
You need to be able to function and be able to get out of bed..and be able to fight this lyme battle.
There is not a quick fix with a pill that is going to help your body defend itself from bacteria.
Get your body the best fuel and defense that you can. And it can fight this thing for you.

So sorry.....I mis-spoke. It's actually "Monsters inside me - Masters of disguise". I have Comcast and it's on tonight at 9pm on a channel labeled APL....not really sure what that stands for.

My bad.....

As I undersstand ...this show will focus on the parasites that infect/infest us, to which I will assume - will cover Lymes and possibly co-infections associated.

Regards