lyme neuro lyme ms or lupus????

[KATROACH1972]

I have been through heck trying to get what I have wrong diagnosed correctly! I was first diagnosed with lyme disease, and then neuro lyme and told 6 yrs later that they didnt think it was lyme at all! Then sent to rhuem who tested me for lupus which was negative, and sent me to neuro who ruled out ms with one negative mri. Then my rhuem treats me for lupus anyways for last two years. I had numbness on left side of my body and trouble swallowing, was sent to er who said oh its just flare, but when I went to my primary who did another mri of the brain found two lesions one on front right lobe and one on front left lobe, and now i am back to neuro. I am not upset with Rhuem hes treating me to try and slow whatever it is. I do want to mention I have a sister with MS, and sister with Lupus, as well as 6 other relatives with lupus. I am just tired of not knowing what I am dealing with! Another embarassing symptom is hallucinations! i dont hear anything just see stuff, I know its not real but it is annoying. Please help!

[heartprudent]

I think the wise approach to ur case is to do CSF analysis for
chem,clut and senst,VDRL,Bactec TB culture and starting Ceftriaxone 2 g IV Q day for 14-21 day plus or minus Penicillin  2000000 IV q 4-6 hours this could cover
LYME,syphilis,listieria ,rat bite feverand leptospirosis
This regimen has a littile side effects
if no imrovment u can go for lupus and MS and other autoimmune dillema

[KATROACH1972]

There was a couple times many years ago I was sleeping and my body started shaking my heart rate went skyhigh and then it stopped. I woke up and was like what was that! Scared me. It only happend twice, that I know of, and both times I was asleep. My rhuem ordered those tests and they were all normal! i and confused! I dont know why my body is so dumb! You know how I said I was having left upper quadrant burning? well all lastnight when I was trying to sleep I had bad spasms in same area and it moved up my esophagus into my throat! I am going to see about it today at 230. I was going to tell you I havent seen anything at night or day for 5 or so days! Thanks for helping! Kathy

[Corvin]

You've probably heard of this before, Neuropsychiatric systemic lupus erythematosus (NPSLE). It can explain some of the pychosis and possilby the brain lesions you have. When lupus is in the brain it can cause small blood vessels to inflame, or even become ischemic, basically vasculitis. Also due to autoantibodies and cytokines it can attack and destroy white matter and myelin just like Multiple Sclerosis.

So my thinking is SLE can definitely be a more devastating disease than MS and can behave just like MS when Lupus is in the brain. So saying you have Lupus and MS would be like saying I have Pneumonia and Bronchitis. I don't see any way of differentiating MS from SLE. I think also you have more than enough of the criteria to have a definitve case of SLE.

All those other antibodies I mentioned before that they can check for, really antibodies to double stranded DNA, and anti Smith antibodies and antiphospholipid antibodies would be the only ones your Rheumy would have to really check for. But he I'm sure knows a lot more about all this protein mumbo jumbo than I do.

This has to definitley be the most complicated disease I've ever read about and your right when you have a bunch of autoantibodies they don't follow any pratucular rules, reading case studies only gives an idea of what can happen. I hope though that you can find a treatment to control your flares and secondary symptoms properly. I'm curious if your Neuro will order more tests like Lumbar Puncture, and I would'nt even be surprised if your lesions are gone on a follow up MRI if they were caused by Vasculitis.

You haven't ever experienced seizures have you?

Here's some more fun reading:

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=102&zoneid=17

Or just google " cns lupus "

[KATROACH1972]

Thanks Corvin,
I was only on methetextrate and prednisone, pain got worse when I stopped the mtx. I love my Rhuem. he stays in room till, you are done asking questions. I went to see movie Knowing tonight(was good!) I hope you have great night! kathy

[Corvin]

Only problem is House has a god complex and is arrogant too! And that's how he basically figures stuff out is from doing a bunch of invasive tests. Except he won't stop until he gets the right diagnosis I guess.

I see a specialist too a Pulmonologist, he's pretty good, but I wonder how much experience he has treating Sarcoidosis, but I figure it's closer than driving to Mayo.

Ya doctors mainly it's like they have their mind made up when they walk in the room and whatever symptoms you try to explain if it don't fit what they already made their mind up about they don't care. That and you basically have 15 minutes but 10 of that they spend in their office deciding what their going to tell you and then 5 minutes actually talking to you.

Actually the best physician I've ever been too wasn't an MD, she was a Family Nurse Practitioner, she was just as knowledgeable as my regular Family MD doctor, except she would do the opposite she would listen to my symptoms and change her game plan on the fly and she wouldn't get up and leave until I was ready to leave. So needless to say I think I'll drop my MD and go to her from now on and if theirs something she doesn't understand she can just go and ask one of the doctors.

The abdominal pain below your left rib, that's kind of where the colon makes a sharp bend into the descending colon and I know this is a common area to get Colitis, I'm sure you know or have maybe already had tests for this too. I'm just thinking if your on or were on Immunosuppressants when this started it could be a Colon infection. Or even some antibiotics disturb gut flora and can lead to Colitis, or a combination of both.

[KATROACH1972]

SORRY I REREAD YOUR POST AND FORGET TO ANSWER SOME. I THINK MY PRESSURE ON SPINAL WAS 27, ATLEAST THATS WHAT I THINK THEY SAID!

[KATROACH1972]

All those sites are interesting! Just wish Drs were more open! My Rhuem said Autoimmune Diseases cant read, so they dont follow what a man says they should do in a textbook! lol true! I go to Neuro thursday! By the way my hallucinations have got less... weird seems like spells they do that! a few weeks, and the none for a while! just like what i got going on, except it doesnt seem to be taking a break lately!...Kathy

[KATROACH1972]

I also have had bad spasm and burning under my left rib! I think its connected to my diarehea, because I have some relief after I go. Sorry I am strange

[KATROACH1972]

Thanks for the information. My Dr. Rhuem. Said seronegative Lupus is what hes treating me for. Now I have to make the Primary Physcian believe I have it! He is a butthead! Most drs i have dealt with have been! I know you know what I mean! arrogant with a God complex! Especially since I was nurse they hated me trying to help figure out what was wrong! I have a friend with ms, and lupus thats why I asked. I had Mono about 8 years ago. ( does that help) I dont know. i had 24 hour urine it just showed low urine output and some thing you find in Rhubarb! i never had a rhubarb! oh also in strawberries! Which I never eat either! I am a weirdo! i need the dude off of house to figure out all this junk! my main concern is that my insurance doesnt try to cut off the only Dr. that is trying to help! , because of seronegative part! Hes been a Rhuem 27years he know his stuff!

[Corvin]

I copied this from CDC website:

*CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results. Such results may lead to patients being treated for Lyme disease when they don't have it and not getting appropriate treatment for the true cause of their illness.

Source= http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm

[Corvin]

I'm starting to think you original DX of Lyme was misdiagnosed because of a false positive from Epstein-Barr Virus antibodies.

[Corvin]

Pleurisy and kidney cysts too! You definitely have to have SLE at least until proven otherwise. Although in a some cases people with Sarcoidosis also develop Pleurisy and Kidney "cysts"(actually a consolidation of granulomas)and kidney stones due to Hypercalcemia. But Pleurisy and Kidney Cysts are more common in SLE. I bet if they checked your urine over 24hrs it would show high levels of protein and possibly calcium, but you have to check it every time you urinate for a day not just once. Hypercalcemia has it's own set of problems in it's self apart from having the Lupus.

The fungal thing if the infection got deep enough it could have gotten into the bloodstream but if it did you would develop septic shock within a few weeks and would be in the hospital or deceased. But if your concerned about this they can culture your blood, but if the toe infection cleared up and this has been more than a few weeks ago I wouldn't worry about it.

It is theoretically possible you have some co-morbid mix of MS, RA, and Rosacea, but it's going to involve more testing. Probably spinal tap with immunoglobulin micros, follow up head/spine MRI's, biopsies of kidney cysts or any other abnormal growth, an ELISA test, 24hr urine test, biopsy of your rash tissue, and evoked potentials and brain EEG.  I don't know much about diagnosing SLE but it sounds like their is subsets of ANA and other antibodies you can test if ANA is negative such as: cardiolipin antibody, anti-smith antibody, anti-Re and anti-La, and SS-A and SS-B antibodies.

Actually ANA negative SLE isn't unheard of it's found in 5-13% of SLE patients.

Here's an interesting article I found:

                      http://www.indianpediatrics.net/may2000/may-540-542.htm
Also:

                     http://lupus.about.com/od/typesoflupus/p/LupANANeg.htm

Or just google " ANA negative SLE "

What do you think about all this?

When did your rashes appear was it fairly early on like six years ago or even before that?

[KATROACH1972]

I was referring to Amsler grid.  Where you cover one eye and then the other to make sure you can see grid correctly. I have been scared of cancer, believe me. I dont get copies, they always make it difficult to get stuff. I do have a dry cough, and get pluerisy, 2 or 3 times a year. I just have so many symptoms I didnt write them all. I had scan on kidneys, said I have cysts, and stones. Didnt do anything about them. I had spots on lungs, they said after ct scan, oh.. its just fat! thats also on left side. I have had probably all those tests you mention, but I dont know for sure. I had a fungal toenail infection for 9years and never treated it, do you think the methetextrate or steroids could have made it systemic? Thanks again for your response. Oh. 1 white blood cell i think is what they said back then not sure. I may have autoimmune and ms? possible? Kathy

[Corvin]

Basically I still believe you have probable Systemic lupus erythematosus (SLE). The main other disease that can mimic SLE is called Sarcoidosis, which is what I have. Mainly I'm stuck on the rash on your face because this is fairly specific to SLE and sometimes Sarcoidosis, unless it was misdiagnosed and is some kind of eczema or something. Low grade fever, is also fairly specific to SLE and Sarc, well and cancer but we won't go there. Basically you and me share alot of the same symptoms except I don't have a rash, trouble swallowing, hallucinations, macular degeneration, or bladder/bowel problems. Stuff I have that you didn't mention is chest pain and dry cough, but no one has the same exact symptomology either.

I can see why your doctors are having a hard time with this, if I seen a patient with systemic involvement and a rash on their face I would automatically think SLE. But it's true that to have lupus and a negative ANA is basically unheard of, definite lupus anyway, but you could still have probable lupus and still get the same treatment.

But it's still important that they eliminate other possible causes as much as possible so your not being treated for the wrong disease. I would get another at least ELISA test for the Lyme just to be more sure that's not still a factor. Mainly I don't think you have MS because it doesn't explain the rash and low grade fevers, and joint pain. SLE, Sarcoidosis, and Rheumotoid Arthritis are all treated basically the same, take Prednisone and/or Methotrexlate. (big whoop huh?)

Pseudo Tumor is diagnosed after there's found to be no explainable cause of Intracranial Hypertension (IH), but if you have an autoimmune disease causing inflammation in the CNS that can create IH and IH can cause Papilledema, and Papilledema can cause Macular Degeneration. But Lupus and Sarcoidosis just through inflammation can cause damage to the retina also.

I had a high opening pressure too mine was 34 mm/hg, do you remember what yours was out of curiosity? Also after they seen you had IH did they check your eye's for Papilledema?

What is "amsler every day"?

What did you mean exactly by "and just 1 I think wbc" ,did you mean they tested your serum white blood count once or you only had one white blood cell in your spinal fluid?

Your blood tests have they also checked coagulation factors, ACE, LDH, and full metabolic panel? (the time they thought you stroked they probably would have checked your coagulation factors)

Have you ever had a chest/pelvic/abdominal CT with contrast?

Another thing is they'll check the blood for kidney and liver function but they sometimes forget to check the urine also. Have you ever had an Urinalysis to check for excessive proteins and stuff?

Do you get copies of your test results, mainly your CT, MRI, and blood tests, doctors are terrible about telling you everything the reports say? (if you get copies and need help interpreting them send what they say to me in a PM)

[KATROACH1972]

Sorry i forgot i cant be in heat! it multiplies me feeling horrible, I have choked several time on my food, and my esophugus hurts like food is stuck, when I eat.

[KATROACH1972]

Sorry i forgot i can be in heat! it multiplies me feeling horrible, I have choked several time on my food, and my esophugus hurts like food is stuck, when I eat.

[KATROACH1972]

Hi, where do I start? well, I did have a positve western blot, thats when they stuck in hospital 1 week, iv antibiotics, then home with PIC line iv antibiotics 28days. When was all said and done I still was having what I said was flare ups several months apart, then evry month then, every two or three weeks ect.. So I went back, was told by neuro, well you must have chronic neuro lyme, and that he had no need to see me anymore! I had a spinaltap in the hospital, it show pseudo tumor cerbri, and just 1 I think wbc. That was so long ago hard to remember. Anyways I went on internet with my diagmosis, and seen oral antibiotics, so thats what I did.for years! Mean while my symptoms were not going any where, so I finally got nerve to see the infectious disease dr. again who said we dont believe you had in first place, and that there is no such thing as neuro lyme! Took another lyme test( which he said was negative), but when I was sent to Rhuem. he said test was inconclusive? not positive or negative. He sent me to neuro, to rule out MS 2 years ago, they did brain mri, said no lesions! and that they wouldnt see me for that problem again. Well, then my Rhuem, which is the only Dr that has been caring started prednisone, when it helped some, he added other med and then  the things I called flares slowed down! mystery is my ana has alaways been negative! I have high sed rate, positive rhuem factor, high crp, and since all this has started a neice with a positive lupus test a sister with a positive ana and found out at reunion that several cousins on my moms side also have lupus! So based on neuro blowing me off, and my symptoms which change depending on whats being attacked at the time he is still trying to help me. I do have one sister with MS 2. Anyways 3 weeks ago numbness of left face left leg left arm sent me to er! They did ct scan said is not stroke, mayb flare gave me iv steroids and told me see primary. My primary which I never seen said well, you have never had positive ana, so why do they say you have lupus! he ordered an mri, and next day called to tell me there where 2 spots one on left frontal lobe one on rihjt frontal lobe, and then wanted me to see neuro with in week, well that turned to april 23rd. As for the hallucinations I only see them while laying down and they are vivid stuff people, animals etc.. I also know the things i see i have seen on tv, etc... My Rhuem sais my brain could be mis firing? I have macular degeneration in both eyes with no explanation yet. and im 37, I have to do visual field every 6 months and amsler every day. I would think ms , I have fevers low grade everyday, butterfly rash on face, and chest, joint pain, on top of fatigue, flu feeling, urinary urgency, bowel urgency, numbness, electrical shocks everywhere, bad mood swings!, depression, ect.. brain fog bad....... thats why I cant think of anything else, oh short term memory loss. I am soo drained and tired of not knowing and being brushed off or treated for unknown stuff. Oh yeah I was on methetextrae 7 months stopped it, and my cns symptoms got worse like 2-3wks later. I really dont what else. I am brain dumb more! I am of indian decent, but also eurpean. I live in texas. My Rhuem said I may have sero negative lupus,or my own autoimmune disease, or ms or combination! Thanks for replying. I know I rambled , sorry. Kathy

[Corvin]

Hello KATROACH1972,

This is interestiong, if you never originally had a positive test for ELISA and/or Western blot I don't know how they could have diagnosed you with lyme, unless you had a false positive because of EBV or HSV.

Lupus there really is no test to say you have it or don't except if you're positive for Anti-Nuclear Antibodies but even that is non specific to Lupus. Lupus though usually has systemic involvement like rashes on skin, joint pain//swelling, and possibly inflammation/scarring in one or more organs in the body.

Multiple Sclerosis would be unusual to go 6 years without lesions, usually they should appear by the second relapse. But sometimes lesions start in the spinal cord, so if they missed your cord when they did first MRI they could have missed it, especially if your initial neuro symptoms involved weakness/numbness/paralysis of your limb(s).

But if I was your doctor and you showed lesions in your brain especially that were never there on your last MRI, I would be knocking myself out to order a Spinal Tap. Also a followup MRI in 6 months and they should MRI your entire spine not just your brain(but it sort of depends on what your symptoms are). Maybe you could also post the report of your MRI on here so I can read where your lesions are. I also have more questions:

Have you ever had your CSF studied, or more importantly after your last MRI?

Are you African American or Hispanic or Northern European Caucasian?

What state did you grow up in?

This probably isn't my beeswax but the hallucinations do you see objects/people clearly or do you just see like shadows and things moving in your peripheral vision? And do you have other visual symptoms?

Your neuro problems are they relapse/remitting or pretty much constant but just sort of wax and wane in intensity?

Could you write a list of your symptoms or at least do you have any non CNS symptoms like chronic arthritis and/or rashes or red sore bumps?

Did the steroids they gave you for Lupus make your symptoms better?