something isn't sitting right with-me, could use some feedback pls

[Jena]

hi,

sorry i haven't been around, been busy with difficult child tutors, my new doctor visits etc.

so, something isnt' sitting right with-me and this new diagnosis. this is why.......

there is a huge controversy over lyme disease vrs. ms diagnosis. i have read up and it's HUGE.

I do have 11 brain lesions, my thinking def. is off, i have memory issues bigtime, i'm beginning to stutter now, a whole bunch of other symptoms.

this is why its' not sitting right with-me.

last year my joints began to swell and that is what triggered the search into what is wrong with-jen.

it was followed up by an e.r. visit upon return from honeymoon due to extreme pain, whereas i was given a lyme's test among other blood work, and the western blot. which is used to confirm lyme's if the elisa test is positive.

I was told yes you have lyme's. I than went to an llmd it's called that speciailizes in it. i was exhausted, fatigued etc. he said your depressed there is no way you have lyme's disease. He also said i think it'sa lung disease.

so i said i'm not depressed i just got back from mexico, i'm simply exhausted. i went to my gp whereas he was like what?? so he sent me for a chest xray immediately. came back lungs are just fine.

he than ran more blood for similar disease all negative. all auto immune.

so he than said go to a neurologist, i had to deal with-difficult child all year so this was put off.

returned from portland extreme pain again, went to e.r. couldn't hack it. they did another lyme's test positive elisa again and again negative western blot.

so neuro, than brain mri lesions found, ms diagnosis. i'm not in ms denial truly. yet something just keeps going into my mind and saying look further. something isnt' right. i could be wrong, could be the level of brain damage i now have.

yet my mind keeps going back to the fact that with ms joints do not swell. second that after working in my yard cutting down trees for hours my joints swelled prior to wedding which was my signal hey something's up.

so, i'm off for more brain mri's tmrw with contrast that stupid metal injection or whatever it is. on both my spine and my brain.

someone check me here? husband ofcourse thinks i'm nuts. yet i'm finding good reason in my mind to say something isn't quite jiving the right way and i could have lyme's disease it's eating my alive literally from inside out and if that stupid dr hadn't said no you dont' i'd be well today having recvd. the antiobotic drugs.

thoughts? sorry so long. am i nuts here or does this seem like valid concern?

 

[Hound dog]

Well..........

I know that lyme's has a stage that includes some neuro issues. I haven't found anywhere anything about lesions though.

I also found where it said you have to be careful about multiple testing for lyme's as it will start giving false positives. Now that they neglected to tell us in school.

My opinion? It's going to be really hard at this point to be sure about the lyme's. Although I'm with you, I don't understand why a specialist in the disease would say you didn't have it with a positive result backed up by western blot. But even so called specialist can be idiots..........I've ran into more than my fair share of them over the years.

However, I have cared for MS patients in the distant past. And we have the male friend with it. I know he's has some issues with his joints and swelling.......but I also know that was back when he tended to over do physical activity too. I've not heard him complain of it in recent years. He's active, just not on the same level he once was.

But what you have to remember is that when they list a group of symptoms of a disease, no two people with the disease are going to be the same. Some will share symptoms, others will have symptoms that the rest don't have. While they will share a group of similar ones........those won't always be the same ones. I hope that came out right. ugh

If it were me? I'd have a sit down with MS doctor and discuss this with him. I'd tell him while I'm not doubting his diagnosis......I'm just trying to make sure 1. I'm not missing anything and 2. what the heck was up with the lyme deal and those tests coming up positive. Most docs can understand that.

With the joint swelling thing.......you could be dealing with arthritis, instead of lymes in addition to the MS.........which is why it's good to talk it over with him. While he's not a specialist for the one.......well he should have vast knowledge in ms and be able to answer at least part of the questions you're having. As for the ones he can't answer.....a good doctor would work on finding those answers for you.

Hugs

 

[Josie]

I think you should follow your instincts.

I am sending you a PM.

 

[susiestar]

I was going to suggest that you pm hope. Glad she saw this - she is an awesome resource for lyme as her daughter has struggled with it for a long time now. You have instincts for a reason. Don't ignore them.

 

[Jena]

lisa

the western blot always returns negative, yet elisa is always positive. i have to be honest i have huge sensory issues now as well as very substantial cognitive issues taht i thought i was just stressed or going nuts. it's worth talking to him about after the next two mri's tmrw. i could just be wrong, i've def. been wrong before. yet just so much controversy over it all. granted my families been told it's ms, iv'e worked thru the stages and than suddenly i was like hmmm something doesn't feel quite right with this. could just be the ms diagnosis LOL.

 

[keista]

Long Island, NY Definitely higher chance than average to get Lyme's.

I'm jumping ahead. What is the treatment for Lyme's? What's the prognosis of treatment? If you don't have Lyme's, will the treatment affect you negatively? What is the treatment for ms? What's the prognosis of treatment? If you don't actually have ms wil that treatment affect you negatively? I think these are the questions you need to start asking. Then listen to your gut.

It's situations like that really make me HATE the medical community.. All these different specialists, and none of them talk to each other, and they don't even keep up on stuff that could look like their specialty. GRRR

 

[hearts and roses]

Jen, I spoke with a woman I know whose Lyme went undiagnosed for almost 7 years...until she finally found an MD whose specialty was inflammatory diseases and autoimmune diseases. This woman lives in CT but the dr is about an hour away up in MA.

I have to agree that you need to have a very honest discussion with your MS dr and lay out all the tests, results and subsequent diagnosis. If he/she is worth their salt, they will listen and discuss with you and, for your peace of mind, refer you to a Lyme specialist and work with that dr hand in hand until you have a definitive diagnosis and you're satisfied that you've exhausted all efforts to find out exactly what's going on.

In regards to Lisa's comment about arthritis, I have to agree. Along with the MS, you could very well be experiencing osteoarthritis in your knees/joints. Within the past few years, mine has gotten way worse, I've BEGGED my dr to test and retest me for lymes. I tested positive once and was treated once, but I was convinced I needed to be retreated. Finally, my dr retested me and again it was negative. My knee surgeon once mentioned arthritis in passing, but it wasn't until I really pressed him did he say, 'Yes, you have fairly advanced osteoarthritis and two small bone spurs'. Up until that point, he just recommended the shots and advil. Now that has stopped working. My knees ache constantly and they are swollen whenever I do anything more strenuous than normal, the left one is almost twice as big as my right. Don't rule out the possibility of arthritis. There are different kinds.

Let us know how it goes, you've been on my mind a lot lately.

 

[HaoZi]

Wait a minute - did this start before or after your trip to Mexico?

 

[Josie]

Jo and Jena, you should both read the book "Cure Unknown" by Pamela Weintraub and/or watch the movie "Under Our Skin". The movie might be on PBS in your area soon and is available on Netflix.

If you want to get a different view on Lyme, you need to go to a Lyme Literate MD, not a regular Lyme specialist. A regular Lyme specialist will most likely tell you the same thing you have been told already, because they will go by the two tier test and want a positive ELISA followed by a positive WB.

ETA: I see you said you went to an LLMD already. An LLMD regarded as one by the chronic Lyme community would not tell you there is "no way" you have Lyme, with your symptoms and your positive ELISA test.

 

[Star*]

Jenn -

I have NO clue about either Lymes or MD. I do personally have two auto immune diseases though that are no where near the level of pain that from what I've read about breifly either of these two diseases are. I have been going to the doctor for eight years trying to rule out Lupus. So I'm not much of a help with your diagnosis. Sorry. In all the reading that I've done albeit briefly - I haven't seen anything about Lymes and leisions so I'm not sure what is going on. And you know I'm famous for my wonderful bedside manner. pft. You have leisions on more than just your brain right? On your spine too - so I'm just not sure what that is. Hugs -

I can tell you this - I found a tick on Pootie this morning and got plyers and a lighter and burned the thing past crispy. Then dusted her with Diatomateous earth. Nasty nasty things. I usually am catch and release but those things can just go up in flames. Can't think of one useful act on earth they serve. Proabably against all the Buddhist teachings - but I'll take a swat for it.

 

[DammitJanet]

Can I ask what your RA factors were and what your ANA panal was? I think it is ANA. Im getting a little foggy now. My numbers scatter over time from borderline okay to well you may have a problem so they wont actually diagnosis me with some form of a rheumatoid issue full time. At differing times my chart has said things like autoimmune disease but they wont keep it full time. I fully believe I have seronegative rheumatoid arthritis. My knees and hands swell badly. The doctors can feel the fluid on them. I have bone spurs in my knees and they have already been cleaned out once.

I would definitely take a long look before I took the medications for MS. They are quite potent drugs. The medication for lymes is simply an antibiotic taken for a long time but its one that most of us have taken previously with little issue. OA medications are pretty benign because their arent many that really help. Now RA drugs can get back into that potent category again because they tend to be cancer drugs but in low doses.

 

[Hound dog]

Jena

Bottom line.

No matter what it is, or even if it is a combination of things, you need and have a right to be certain about your diagnosis. If there is question, then it needs to be cleared up one way or the other. Because NO doctor can effectively treat you if he doesn't know ALL that is going on.

This is why I get so ticked when fam docs and specialists don't communicate back and forth and share information like they should. I also get major ticked when docs don't take the time to read the patient's medical hx too. In recent years I've gotten to where I don't even fill in the forms when I see a new doctor concerning hx.....what's the point? They never read it anyway. So instead, I tell them in person, or have it written down for them by date ect. The latter they seem to find the most helpful.

So if you have doubts, and obviously you do, then you keep pushing for answers until those doubts are cleared up. You are your own best advocate.

Having lived with Lyme's Hope should be able to give you valuable info on it.

((hugs))

 

[Josie]

I happen to know about Lyme, but my advice to follow your instinct would apply even if you were talking about something else.

When I have had a persistent feeling about a health issue, it has led me in the right direction, even when it was being denied all around by doctors. It happened to me with celiac disease and Lyme disease.

The chronic Lyme group believes MS is often Lyme. I've also met a woman whose husband was diagnosis'ed with MS and it turned out to be celiac causing his brain lesions. His MS improved or went away by doing the girlfriend diet.

Obviously, I am no expert but my feeling is that they don't know what causes MS and there could be multiple causes for different people, some fixable and some not. If I were diagnosis'ed with MS, I would look into all the alternative health measures that supposedly work for MS and see if anything clicked with me before deciding what to do. I don't think nagging feelings should be ignored.

 

[TerryJ2]

Jena, I don't know anything about brain lesions and how they are related to Lyme, but many of your symptoms, plus the timing, sound right on the money.
I agree with-others, that when I have trusted my gut, I have always been right.
I had a team of doctors once tell me I had Toxic Shock, when in fact, I had an unspecified infection (could very well have been mono), was given Bactrim, and was violently allergic to it. It took me 10 yrs go get it straight (and another bout with-Bactrim, plus 2 doctors who agreed and actually had brains).
I am so sorry for what you are going through and feel so badly for you. It seems that all your strength is going toward coping with-your g'sfg, and your health issues. Sometimes life just isn't fair.

 

[april1974]

Trust your gut♥

 

[Jena]

hope thanks i'll look at later. running out for mri now for spine.

star that jen voice keeps saying dig further, my instincts are yelling at me a bit. so i have to just dig a little further. thing is with lyme it can be fatal and yes you can have lesions from lyme disease. lyme basic makes the body attack itself it can lead to all sorts of issues.

so i called the doctor who said i didnt' have it, waiting on appointment he's an llmd. other llmd's wont' touch me with-o a doctor referral at this point. i am leaving message for my neuro to discuss this and going in to see gp.

also if you take the ms medications and do have severe lyme's it can be very harmful.

 

[HaoZi]

Jen, when did it start? I know a woman in my area that went to Central America last year and is having similar issues from something she caught there that doesn't occur in the U.S. The docs here have no clue what it is, they just say "virus" and give her generic advice.

 

[Jena]

soooo went today and have a whole lotta spinal lesions... i found so far 10 yet that's just my upper spine connected to brain stem. my symptoms of blurry vision to be very honest began years ago i thought was stress related. what's getting me is i tested positive 2x for lyme on the elisa test. yet i'm negative on the western blot. which means you dont' have it.

anyway, we'll see i go bck to llmd next week they called me today, spoke to neuro's office left him msg to dig apart my blood work and call lab on bands etc. for lyme, and meanwhile got gp on hold to give me antibiotics if it is lyme.

the yard work did stick in my mind, yet i was having blurred vision up to 6 years ago and dropped foot. i go camping each summer with kids anyway so it's worth a shot to run one more round of lyme' testing.

and yes drugs are so potent. one of my options was chemo. i decided to wait till today and getting the spinal mri to see how bad that area was to determine how much leg time i have before taking medications anyway.

i've been eating gluten free for 3 weeks now. it isn't easy..... no dairy either. just organic veggies, fruits, rice cakes, organic chicken, and fish and salad. oh yea i soooo miss my foods i ate

 

[Jena]

haozi if it's lymes one of the best drugs i researched for it is cirpo in very low doses starting at 250mg. it was pulled few years back due to fact they stated ok not a lyme medication. yet this one doctor i found has been using it and his patients are like 90% better. worth a shot. that's what i was going to take. yet if i had lyme's it would be way advanced for me to have all these lesions

 

[keista]

Sorry, but I'm gonna play devil's advocate here. What if it's both? Not meaning to scare you, but what if it were indeed both? What treatment plan would the doctors recommend? I'm voting Lyme's because that 's what it seems your gut is telling you, but doctors, you know...... So if you pose that possibility, they might pause to at least consider the possibility.