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Looking for input on my story, kinda long sorry

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Old 09-17-2012, 09:59 AM   #1
Join Date: Sep 2012
Location: Eastern, MA USA
Posts: 6
jglenx HB User
Swollen foot. Lyme maybe chronic? Long story sorry

I live in New England in an area that is heavily populated with deer tick. You would think considering where I live that doctors would be more educated on this disease and its symptoms. In my experience so far and others I have talked to this isn't always the case.

Sorry if this is long, but I am hoping that someone with more experience with this disease will have some input on what is going on with me.

Four years ago, I got a rash on my hip. It didn't have that "bullseye" look to it. Still I googled rashes and suspected it could be lyme. I went to a clinic and told him what I thought. He brushed that off because it didn't look bullseye and told me it was yeast. This seemed silly, I am of average build, no fat flaps on my hip or anything that would hold moisture. Still I took his cream and used it with no change for a week or so. Not only had the rash grown to the size of a frisbee now, somedays it did have that bullseye look but it changed in appearance. I took a picture and went to see another doctor. (I might mention I am hypothyroid and have been tired and sore a couple weeks before the rash. I had my thyroid tested suspecting that was the cause, it was ok). She agreed with the first doctor and gave me a stronger cream. Because it didn't look bullseye, I told her about my other symptoms that I thought might have been thyroid, she brushed me off. Now feeling like a little bit of a hypochondriac, I show her the picture. So she sent me for the test for peace of mind as well as some more cream. Well of coarse it comes back positive. I take the doxy and it goes away. I made an appt with Infectious disease to be safe after my dose. He runs a test again warning me that it could still be in my blood but I was happy that it came back clean without a trace of lyme. Alls good.

Now 2-3 months ago, I had a lapse in health insurance. In this time I ran out of refills on my thyroid script. My new doctor won't fill it until I am seen. I make an appt for 6 weeks when my insurance will kick in. He still won't fill it. I start feeling symptoms of my thyroid levels dropping. Fatigue, achy, trouble sleeping. . .about the same time early June (It is Sept 17th now) my toes get itchy. A week or so later I get a rash. Wierd but not too concerning. It runs up my foot then one day it goes away just like that. I didn't think much about it. No problems other then still feeling exhausted from not getting my thyroid meds. Then late July my toes ( the three in the middle) feel bruised. That week I developed an edema that swells and gets better for no reason. I am a waitress, so this sucks. Some days I have to limp. I have an appt with the dr. Sept 4th as my insurance started back the 1st. I have mild anxiety. I have never really been treated other then getting a few scripts of xanax from a previous doctor years back. Around the time of my lyme episode. Well my anxiety is really bad presently, maybe the thyroid, maybe because the foot is a problem interferring with work and taking care of my family. I am starting to get depressed. I also have developed a lump on my wrist that I am sure is a cyst and wouldn't be a problem if it didn't interfer with me carrying trays at work. So by the time I get to the doctor for a physical I admit to being kinda a basket case. Most of the talk is about me feeling depressed. He perscribes an anti depressant. Then I show him my foot, he seems puzzled. I mention how I had the rash could it be lyme? No he says because it is localized in three toes. Prob a stress fracture as I am a waitress. Lets send you to a podiatrist. I show him my wrist. He says gangaloid cyst (sp?) and I think he is right about that. I ask for a lyme test and he takes it. He perscribes me a thyroid med without taking blood test, infact he didn't call for any blood test other then lyme at my request, this is of coarse is a physical.

Next day at the podiatrist. He gives me an exam, (he was a really nice man by the way He believes I have a neuroma (a beingh tumor, or thickening of the nerve between the toes.) He give a shot of cortizone this is the routine treatment and will help with the pain. This is Thursday. My foot hurts so bad that I leave work that night without having taking a table, out of character for me.

Next day, amazing foot is 80% better. I work a busy friday night without problems. I had a small anxiety attack that was a little strange but maybe it is the antidepressants not agreeing with me.

Saturday foot is swollen up and worse then ever. I have major anxiety like never before. I stop taking antidepressant.

Call both Primary and Podiatrist Monday morning. Major swelling in foot. Podiatrist takes me that day. He is a little puzzled. I took 3 Advil so I wasn't really feeling pain in the foot for his exam and swelling has gone down somewhat. He told me my xray showed no fracture, and he tested my uric acid which rules out gout. He is curious about my lyme test. But I have not heard back and I know it could take a week or so on those results. Because I did seem to respond the the cortizone he suggests trying it again. Off I go. It didn't have the same results as last time, not much better day after but Wednesday a little better.

I see Primary on Thursday. Swelling is down but still hurts. He wants to talk about anxiety. I try to explain how I feel the anxiety is tied to my foot because some days I can't get anything done, I have had to miss some work and when I am there it isn't cool being a limping waitress. He says, the foot doesn't look that bad. I see what your saying but it isn't that bad. I explain it comes and goes but always hurts, and my newest symptoms, swelling is going down but toes are still stiff and some times are a bit blue, (which he agreed) I feel like the pain is traveling up my leg, I have dull ache. My energy level is a 3 out of 10. I get dizzy, my eyes go out of focus to the point I passed out once. He thinks this is anxiety, he could be right, but he wouldn't know because he hasn't run any test on me other then the lyme, which I have asked about a couple times. He looks it up at the end of the appointment where he has prescribed 10 anxiety pills (now I will have anxiety about running out of anxiety pills lol) and says, huh, it is positive. My eyes tear up. Then he says, Well the acute test is Negative, you are tested positive for Chronic and where you haven't had a rash or anything. . . Are you kidding me?? I have mentioned this rash several times, you just choose to believe it is unrealated.

He says, I don't think you have lyme, this could just be because you had it in the past and it is in your blood stream. I am clearly upset now. So he says he could treat it with doxy or send me to infectious disease. So I leave to make an appt with the ID, take my script for 10 pills and his advice for my foot was get a second opinion, do not get anymore cortizone. He also asked me with a half smile as I am clearly more anxious in his office then normal, "In your rational mind do you understand you are not dying of cancer or anything like that." I told him I might be a little nuts but not totally nuts, I never mentioned anything of that extreme, but he wouldn't know if I was or not because he hasn't run a blood test other then lyme! (well I didn't say that last part).

I am clearly fustrated and I admit I a obsessing a bit. Where I am now is I have another week for my ID appt, I have kept my appt with the podiatrist who had mentioned maybe seeing a rhemotoid (sp?) specialist. My foot is feeling better, just slight swelling and stiffness, legs feel restless, still dizzy spells and feeling like my heart is slowing (could be anxietyor thyroid, I get that) I have also arranged to cover my shifts at work until I get this I figure this out because of the dizzy spells, foot and anxiety.

I know this was long winded. I am hoping to get out of this your input, and maybe if anyone could identify with these symptoms. The foot being connected with the lyme?? Or unrealated? What is the difference between acute and chronic. I understand the difference, but what does that mean to me?? Thank you in advance for reading my story and ANY thing you can say I will appreciate.

Last edited by jglenx; 09-17-2012 at 10:14 AM. Reason: change title

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Old 09-17-2012, 08:31 PM   #2
Join Date: Aug 2012
Location: Reno, NV
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annalisa9397 HB Userannalisa9397 HB Userannalisa9397 HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

You definitely are going thru a lot. From my Lyme experience, your symptoms could definitely could all be related to Lyme. I never had anxiety until I became infected with Lyme. All of your symptoms are similar to things I have had. Do not second guess yourself. Go with your gut feeling. Are you able to find an llmd? I truly believe they are the only ones who can help us

Old 09-18-2012, 02:37 AM   #3
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lala52 HB Userlala52 HB Userlala52 HB Userlala52 HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

It sounds like you still have lyme. You need to go to a LLMD. The other drs don;t know how to treat it properly. The only thing is that the LLMD don;t take insurance. LaLa

Old 09-18-2012, 06:13 AM   #4
Join Date: Sep 2012
Location: Eastern, MA USA
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jglenx HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

Financially a LLMD is out of the question. And I haven't been able to find one either. Is there no hope with Infectious Disease??

Old 09-18-2012, 10:09 AM   #5
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jw90 HB Userjw90 HB Userjw90 HB Userjw90 HB Userjw90 HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

just let me say one thing ..your health is everything and your body does not care that you can't afford it..If it was me I would go to LLMD and make small payments no matter how long it took to pay it off..once you are well you will be able to take care of whatever bills come up ..but the longer you put this off the sicker you will get..I have a friend who kept going to her MD for over a year and now she is sicker than ever..we finally got her to see a specialist and she has 4 different kinds of lyme disease and he is going to treat them one at a now she can't work..until she gets to feeling better..just saying don't put this off..and I have been in your shoes also with no insurance and not enough to pays for meds but I went to the local hospital social services and they helped me get them..there is help if you just look for it..

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Old 09-19-2012, 09:37 AM   #6
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bethany79 HB Userbethany79 HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

About your thyroid, do you still have your thyroid? Do you have Hashi's? Ever have a /S of the thyroid? I am having lyme and thyroid issues myself and it's been tough distinguishing the symptoms of each.

Last edited by moderator2; 09-22-2012 at 08:45 AM. Reason: please do not quote reply the huge posts

Old 09-22-2012, 08:31 AM   #7
Join Date: Sep 2012
Location: Eastern, MA USA
Posts: 6
jglenx HB User
Re: Swollen foot. Lyme maybe chronic? Long story sorry

I do not know about Hashi's or a/s of the thyroid. I agree that it is hard to distinguish the difference. The foot swelling is wierd and I am being told is not related to they thyroid and still haven't got the ID.

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