posted
I haven't been on here as much lately, but honestly, I feel my docs here are trying to kill me. I can't sit at the computer much, or walk very well at this point.
I have an appt. today (follow up) with a neurologist, and I DREAD it so. He has been aloof, and although he says I have "neuropathy" has been stumped as to the cause. He has previous records of mine from a neuro who I used to see which diagnosed me with MS. After getting a 2nd opinion and being on copaxone a month or two, it was found to be not accurate.
He knows I have plaques on my brain from the previous MRI, and my new pcp referred me to him to "rule out" MS and lyme. When I first saw her I was still on my abx from llmd and she promptly did her "titer" test, as they call it. I'm assuming that's the ELISA? Anyway, she then took me off the abx.
I have been just riding this out, letting her do test after test, just to make sure there is nothing else going on in my body, before I can get SOMEONE to treat me again with abx. I guess it's been about 7 or 8 months now.
She's found that my triglycerides are high, but my cholesterol is not. I have a new pill for that. She's told me to lose weight, and I've lost 30 lbs., with her estimate of about 30 more to go. She's had me do sleep studies and I now have a cpap machine here. My dh is thankful for that, as he often times thought I'd stopped breathing at night and was dying. She found nodules on my thyroid which turned out to be so small they wouldn't do anything. I had a kidney stone and had to be cathaterized at the ER for that.
But, the neuro's always just get to me, as they are so demeaning. He acted like I WANTED to have MS, kept saying "you don't have ms, or I don't think you have MS". I'm like, "great, don't want it". He asked about my llmd, or as I said "specialist'. I told him I wasn't there to discuss lyme with him. He insisted upon knowing what my treatment was. So, I said, well, lots of abx, and lots of vitamins, which is true. He chuckled and said, "okay". Like whatever.
The next visit, after 20 tubes of blood and an EMG, he commented that my neuropathy was definately there but he could find no real cause. I kept quiet. He then said he found I was low in B-2 or riboflavin, and that he wanted me to take that for 6 months and see him again. I chuckled this time, and said, "oh, a vitamin?" hmmmm.
SO, I can only imagine what crap I will hear today. AND, he had my pcp do a blood sugar test when I saw her, as I think he keeps looking for diabetes, which isn't there.
Plus, my pcp and urologist have teamed up to take me off my morphine (which I've been on 8 years) from the pain clinic. I am almost off it now, and walking is a REAL chore. When I had to shop the other day I put back on my leg braces from several years ago, at my dh's request. The pain clinic did not like the idea of morphine withdrawl, but they complied as she's my pcp.
I still have one week to be totally off it, but now I'm only at 30 mg a day, my original dose was 180 mg a day (slit in 3 doses). The pain is really bad, and I HOPE he will at least up my neurontin today, but I don't have much faith he will. I just hope he doesn't pull the crazy card out.
I'm not sure my "nerves" can take that again right now. Between the diet, the pain, and the decrease in function due to pain and no abx, I may snap. I don't even see my pcp again until Feb. 1. I kNOW I can't take this that long. I will be at the pain clinic on Dec. 10 though.
I'm sorry this is running so long, I really am anxious about this though. I think dh is right and they will all say that the morphine would not cause that drastic of a reaction when discontinued. BUT, it's the d/c of my abx too..they won't see that. I can probably yell it till I'm blue in the face and they won't see it.
ARGH! I don't know whether to look for wheelchairs and give up, or just begin an abx regimen on my own at this point. I'm scared of either! There is no way I have money to travel to llmd, or to pay out of pocket for one that doesn't take my insurance. I still owe the hospital 2 payments for that ER visit. The holidays, and blah, blah, blah.
I'm sorry, I guess I just needed to vent. After thanksgiving and my mil stating very rudely that my neuropathy was "caused" by my high dose abx, just began the anger, and all this other is NOT helping. Plus, I felt too bad to attend church on Sunday too.
Thanks for listening (reading)
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Wow, you and I are Lyme-sisters, meaning we share the neuropathy, Lyme, walking issues, and chronic pain. (I was just put on butrans patch two days ago.)
Ideas: Take notes of everything said with neuro. Go in with very specific questions, if you can. Take calendar in w/ details of symptoms, duration, times, etc. to show doc. Make eye contact, and know that you best know what's going on with your body. State and repeat things. If you feel disrespected, say that. Docs are human, and some forget the patient and see the file or symptoms only.
My appt with my neuro is on Dec. 19th, and I already have started my list of concerns and questions. My llmd actually printed out my chart notes for me to share with neuro, saying, "He may shake his head and think we're both nuts, or he may see something that leads us on a new path. Neither of those is bad essentially." I felt really good about that. Hoping to rule out MS, ALS, etc., but I also have read a bit that indicates Lyme can "evolve" into other syndromes, and my llmd says that is true and that more research is needed in that area (but insurance companies and western med only practitioners don't want to do this due to costs involved for treatments).
Wish you were in the Midwest, for we have a few really great llmds that are constantly looking at what newer treatments are being created and are willing to listen to their patients.
Hang in there. You're not alone. Admit that life stinks--right now. What is one joy or blessing from today that you can find? Even if it's the refreshing nature of water, a hug (lightly, of course), or a funny picture or joke. Little things like those are how I'm getting through right now. Let us know how it goes.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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posted
Thanks Dove. I guess I'm so used to being ridiculed for believing in the chronic lyme thing, I just expect it. However, he's already stated that it is WITHOUT a doubt NOT my problem. That doesn't leave much room to quibble.
Both my llmd's in the past have encouraged me to go to neurologists to get checked for other stuff. I've had literally 100's of tests done, to no avail. I guess, migraine h/a's and carpal tunnel, and pn were all dx at some points, and yes MS. But, no real break throughs. I guess the whole parietal antibody thing was helpful.
Evidently, it means that my body can not process b-12 in food or pill form. It must be injected or subliminal for me to get any of it. I was told that my brain plaques could be caused by migraines too.
I just really do not feel up to it today, I have already had to lie down once and feel it coming on again.
I'd be interested in finding out who your doc is, in case I could ever see him. Especially if he, or any you know of has success with the neuro stuff. Even when I was feeling much better, the nerve pain never ended. My reflexes got better, and I could walk better, but the pain persisted. This is why I never d/c'd the morphine. Until now.
I will make a list, as I was thinking this morning I need to mention my swallowing issues too, as they are getting worse by the week. Often coughing after taking a bite or a drink. Even at thanksgiving I got choked on cauliflower and coughed for 20 min.
Thanks for the pep talk, I really need it at this point. There is a lady in town that deals with this, and I haven't talked to her in a long time. I tried to fb message her, but she hasn't responded. She probably doesn't get on the computer much I guess. It'd be nice to get together with her just to see how she is and talk. She has been dx'd even longer than I have, but has no one to treat her either.
I appreciate the tips, take care!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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The swallowing issue hit me about three weeks ago. Llmd said he could send me out for endoscopy or try nexium or dexilant, for he was sure I had an eroded esophagus from gerd (even though I kept saying I didn't feel or taste acid reflux). He said that many Lyme patients have gerd with few or no symptoms. He gave me two weeks worth or meds just to try. Guess what, it helped, so now I take nexium each morning. (Now I have thrush that is extending itself further down my throat, making swallowing difficult again. Can't you just range from screaming to crying to laughing hysterically at the weird and terrible and humbling obstacles these illnesses put in our paths?
I even went to my neuro last spring and asked to be tested for Alzheimer's because of the brain fog. He was great about getting me in for that, doing tests for the neuropathy, and listening. I'm on 3 caps 400 mg of gabapentin (neurontin) twice a day and savella 100 mg twice a day for the neuropathy. (I am not a doc or prescribing this, it's just my regime as prescribed by a well-respected neuro.)
Are you in the Midwest? I'm fortunate that life planted us in an area with some progressive docs. Take care at your appointment. Remember that it's okay to keep repeating that you are there for his help with how to cope with the neuropathy (and whatever else you need his help with). At this point, you could even mention that you respect his knowledge of neurology but disagree with (fill in the blank) if he starts a conversation you can't handle or don't need. Focus on you and your family to keep positive today. Best wishes.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Ask for IVIG? Works for neuropathy. Let them do something for it while looking for the cause?
Just a thought. Mine improved a lot.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
I've had the swallowing thing for a long time, but it has worsened over the past few weeks. Many times it would manifest on my 1st bite of a meal, or 1st drink of something. I nearly choked to death one time drinking a soda. Couldn't breathe for over 30 seconds and I began getting light headed.
Lately, it seems it can come up anytime. Like liquids that I drink get stuck in my throat and even come up some before I can get them down. Food too, sometimes. I don't get it, unless it's neurological like all this other is. I used to work with stroke pt.s years ago, and they have many swallowing issues. Never had GERD either.
I take 4 (600mg) gabapentin daily, and need more. At one point I took 9 a day, without my morphine. I take 1 in am, one midday, 2 @ night. Never taken savella, I'll have to look that one up. I have taken so many things for "migraines" of my past, but that doesn't ring a bell.
The other thing I intend to bring back up is the neurogenic bladder stuff. Weaning off the morphine was "supposed" to help that, but it really hasn't. At first I could tell a little difference during the day, but in the mornings, still the same. Now, it seems as this stuff is all worsening, it's just as bad as ever. I wish I had an appt. with urologist so he could do his retention test and see what I do.
I used to live in MW in Milwaukee, years ago. I guess about 1995-96. I liked it there, but missed my family in TX and moved back.
I had a great doc in WI, but had no idea of lyme at the time. I had my gallbladder out up there too. It was just myself and my 7 yo dd by ourselves there. When I felt bad it was real tough. I was misdiagnosed with lots of stuff then too, poor docs trying to figure out stuff. Once I had events where I just kept passing out, I knew I needed to get closer to family, help for my dd.
It was gorgeous up there though. Everyone loved my accent, and would ask me to say things just to hear me talk. Sounded crazy, but I often had a hard time understanding people there. Certain words were hard until I got the hang of it.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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The NAF actively supports programs that create public and physician awareness of neuropathy, the use of IVIG and other remedies to improve patient care through NAF activities and services.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Sorry, I haven't been back, I had a cluster h/a the night of my appt. Wed.
TuTu, yes, I've been treated 2X, and the 1st time I got no relief, just worse. They dc'd my IV treatment after 3 months. The last time, I did get better on orals after about a year. After 4 years of tx, I began to decline and the doc wouldn't change my treatment. I felt like I wasn't getting anywhere anymore. So, I let my pcp take me off abx after her so called "test".
I've been tested for everything, at least I think so. At least once, maybe more on lots of things.
The neuro didn't let me ask many questions, but he was upset that my PCP took me off my morphine. He claims the type of neuropathy I have is THE most painful type. He claims my b-2 levels are low and it can take up to 1 year to get them back on track. Maybe that is part of it, but I'm pretty sure that's not the whole problem.
Back in around 2005, a neurologist told me my b-12 was real low and that this would fix ALL my neurological issues, it did not. After that she would only treat my "migraines". whatever.
This current neuro believes that my sx's will improve after the b-2 levels get right. I'm not convinced, but I'm taking the b-2.
I heard today that my neuro (from Wed.) got arrested and had his photo in the paper today. Evidently, he got caught with drugs in his car, and was intoxicated when stopped. OMG!! Maybe it's time for someone new?
He took blood levels for the b-2, and pretty much told me to contact pain clinic, and sent me on my way. SO, I got little chance to say anything, except he wanted to know all about my kidney stone, of which I knew VERY little.
I've been in contact with the pain clinic yesterday and today. They will not rx anything until they get the notes from my visit Wed. As of 11:00 this morning the notes hadn't been transcribed yet. Looks like another w/e in hell.
I also must drive one hour each way to pick up any rx they may give. My next appt. with them isn't until Dec. 10th. I am only on 15mg per day as of today. Began with 180mg per day.
I'm thinking of asking them for a patch. I'm wondering, does anyone know if these affect the kidney's??
He also mentioned that there is an infusion for the b-2, but says it's dangerous and also VERY expensive, so he says. Hey, maybe I should just ask him for some of his drugs from his car?? oh, I know, that would never work. He wouldn't share!
Thanks to all for the replies, and suggestions. Too bad I never got a chance to ask him most of the stuff..
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
Twice, sounds as if you've paid for your neuro's time, but got little interaction with him seeing you as a person. On the positive side, it doesn't sound as if your worst fears of the visit happened.
Are you back on a regime of supplements to help? Or is that why you need a llmd to get her or him to guide you?
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Dove, yeah he may have been on drugs! or maybe he was just wanting to get done with the day and get to his "meds"! ha! No, I'm taking vitamins, but haven't been on any other supplements. My current docs told me to stop all that I was on, except for b-12.
Carol, thanks for the links I'll look into them. Been cleaning today and putting together a new headboard with hubby. We decided on getting new bedroom furniture in lieu of exchanging gifts this CHristmas. On the B complex. I can't take it, as my llmd told me my B-6 levels go TOO high, and that is a common problem in lyme, so he said. I will continue with B-2 and B-12 though. They recently tested me for just about everything imaginable and he did not mention B-6 at all, so I'm guessing it's good and covered in my multivitamins. Lymetoo- yeah, that blew me away about him getting arrested too. Yikes is right. The driving sucks, but I do it once a month to go to pain clinic. Most the time they just count my pills, and every 3 months or so I see a doc or PA. However, with the change in meds I'll be seeing someone each month. They are no longer allowed to call in or fax in any kind of narcotic or certain classes of meds. You MUST pick up the rx and then take it to be filled. Crazy? yes, but those are the rules. I am also urine tested every 6 months or so, randomly, to make sure I'm taking only those meds prescribed and at the correct dosage. All this because people abuse the stuff. Since I've only had the one stone I haven't thought about it much, but I'd be willing to take the CP (I told my good friend about this herb that has had numerous stones and she's taking it now) if it would prevent those things. SO painful. I go back to urologist in a few months.
But, I can tell that the morphine isn't causing or making this worse. It's still as bad as ever with the bladder thing. The neuro said that urine retention is very common in middle aged women that have had children. He doesn't believe its neurogenic I don't think. To be honest I really don't know, but I think it is due to it worsening as the neuropathy worsens, and my R leg is "dropping" again as they call it.
My feet don't wanna step where I want them to either. All this is feeling so familiar and I believe I need antibiotics. I have some and once I go back to PCP and get pain clinic stuff figured out I think I'll start some on my own. I may go back to my old PCP who knows what I've been through all this time and be sure that the abx I have will mix okay with whatever all the stuff they give me.
I really appreciate the support here! You guys are terrific. Sometimes we all just need to vent and to know that others have similar experiences. It's such a lonely disease. When I was dx with MS, everyone knew what that was. I didn't get weird questions, weird looks, and that "your crazy" look from people. It was so much easier. However, I Know that if I'd continued on that path I'd be in a wheelchair now, and to me that's just not acceptable!
Thanks again!!!
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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posted
It sounds to me like it's time to get rid of the neurologist and all these other doctors and get some real treatment. You said that you've had every possible test and the neurologist found nothing, except a vitamin B deficiency. Does it really take a neurologist to monitor your Vitamin B?
Why not find a COMPETENT LLMD and get back to real treatment? If you've already tried the ABX and haven't had much success, maybe it's time to try something else (or at least different ABX) with a new LLMD. I have most of the neuro symptoms that you have (neuropathy, difficulty walking, brain lesions, etc) and have made a lot of progress on the Cowden Protocol (herbs).
Whatever you do, I can't see you making much progress with a doctor that can't find a problem; that disregards lyme; and that has been arrested for illegal drugs!
Posts: 177 | From Ohio | Registered: Aug 2012
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true. All true patriot. My finances haven't allowed me to travel the distances to see another llmd at this point. I know it's needed. I've only been off my abx for 8 months or so and now it's really getting much worse.
On the plus side, I spoke to my previous PCP yesterday, as I took my dd in to see him. I told him of the difficulty I am having (in condensed form) and asked him if I make an appt. after the pain clinic gets me back on something, if he can look at the abx I have in my home and tell me if I can possibly take a couple or 3 of those along with my other meds safely. He said sure! He knows the abx help me, and has written refills for my old llmd on occasion, until I could get back up to PA to see him.
My llmd in PA would also take my insurance (well, one of them), and that helped me out a lot. Just the cost of travel to PA, for both myself and my dd was eating me alive. Not to mention all the vitamins and herbs per month. The abx costs were okay, but the anti-virals were high, with insurance. I just don't see how people who are on disability can afford to pay out of pocket for doc appointments, travel, IV drugs, and other stuff.
I WANT to get back in treatment. I do not think the neuro, or the urologist, or the ENT, or the eye doc, or even my new PCP have ANY clue about what I'm experiencing. However, my goal for all this was to get tested and make sure that no other conditions were complicating all this. My treatment was going well, then for several months I was worsening on llmd's recommendations. He, however, refused to change a thing.
So, I wondered if something else was going on. He recommended I see a neuro, and whatever. Since I can't afford to see all at once, plus we were buying a house (or looking to buy) at the time, I had tough choices to make.
I know it all seems simple. Just get treatment. But, here in TX, that's not easy to do. I know these docs are not going to fix my problem, I just wanted to make sure there was nothing else complicating things. Now that I know, I can see that my llmd is probably the one who dropped the ball here. Yes, he did help me, but only to a point.
I feel I have coinfections that he never addressed. SO, I need to make sure that whomever I see in the future is willing to treat these without the blood work proving it. I never had + blood work for babs or bart, but I have many sx's of both. I feel that warrants at least a trial on some of the tx's for these. He did not.
If I had a competent llmd, who took my insurance and I could afford to travel to him, and I could get my insurance to pay for the drugs I cannot afford to buy, I'd already be there!
Sometimes tough choices have to be made for the good of the whole family. I was just venting at the stupidity and absurdity of these local docs! Being off my pain meds has me a lot more cranky I suppose. I can't wait to at least get this part resolved. Otherwise, I go nuts!
But, yeah, new neuro is in order. If having one is even worthwhile. Who knows, the b-2 may help, but we all know it's not the cause, as he suspects
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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I don't know whether to look for wheelchairs and give up, or just begin an abx regimen on my own at this point. I'm scared of either! There is no way I have money to travel to llmd, or to pay out of pocket for one that doesn't take my insurance. I still owe the hospital 2 payments for that ER visit. The holidays, and blah, blah, blah.
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