Erythematous rash?

[Erin]

Can the erythematous rash be extremely itchy?

I just got diagnosed in January with MS...I'm almost positive that it is MS, but I do remember having several tick bites in the very late 90s and early 2000s. I was at the doctor yesterday for bronchitis, and while I was there, I asked them for a copy of a medical report from 2000. I had an extremely itchy rash in the late winter of that year. I had gone to the doctor for it in March.

They told me it was eczema and gave me hydrocoritizone cream. I read the report that I got a copy of yesterday, and in the report, it describes it as an erythematous rash, and that I'd complained that it was extremely pruritic (itchy).

When I finally do get to go see the MS Clinic here in town (if they stop cancelling my appointments! grrr!) Should I show them that medical report, and ask that they do more tests to check me for Lyme disease? I've had exactly one blood test for Lyme, which came back negative. I've read in this forum, and on other places on the internet that the Lyme bacteria likes to hide in your system, and that it's common for false negatives to show up in tests. (am I right about that?)

I dont know if there's much of a difference between Lyme and MS. If Lyme is causing neurological symptoms, does that mean it's gone too long without treatment?

I know that both Lyme and MS are treatable, but is Lyme curable? (I know MS isnt)

[blimeyitslymie]

I removed a tick last summer (I've been infected for the past 17 years, although until 1 and a half years ago was misdiagnosed) and the rash that occurred was not the typical bull's eye. But it was very itchy. I never had a bull's eye the first time around.

Testing is so unreliable. False negatives, false positives, it is enough to spin your brain. I would recommend that you find a physician who specializes in Lyme and have an evaluation done, because Lyme should be diagnosed on both symptoms and test results (as opposed to going to the MS clinic where they might not know the nuances of the disease).

Lyme is definately curable if detected early. THere is much debate about whether chronic, relapsing or recurrent Lyme can be completely cured. There is much hope, though, too, for great improvement in symptoms. Many people who post here, have had Lyme for a long time -- and by living well (reduce stress, no alcohol, caffeine, good diet, exercise, get enough sleep, etc.) and the right combination of western medicine and alternative treatment have gotten 95% of their life back.

Good luck.

[Erin]

I cant find any Lyme-literate doctors where I live. (Nebraska) At least there arent any listed in any of the databases that I've been able to find of LL doctors.

I'm hoping that someone at the MS clinic might actually be Lyme-literate, or that hopefully they'll at least listen to me and my concerns about the Lyme.

I'm probably going to end up begging my regular doctor to look at some of what I've found on the internet about the complexities of Lyme diagnosis' and see if I can get him to do a blood draw on me and send it to one of the Lyme testing sites for me. My regular doctor has been the only one who hasnt looked at me like I'm a hypochondriac. I felt like crap all last fall, and no one would really listen to me. Not even my dad (a nurse anesthetist) I finally had to confront my dad one morning and tell him how sick I felt and that I knew something was wrong. He's been paying my medical bills, and it was that conversation that got my dad to agree to letting me get more tests for MS.

I've been collecting my medical records since last fall, and when I got the appointment(s) for the MS clinic (that keep getting cancelled, so I have yet to talk to anyone there) I had to get copies of all my medical records to send to the clinic. I had the doctors make me copies.

It was after looking at my own medical records that I'm starting to suspect Lyme...even tho I'm almost convinced that it's MS. It's got to be one of the two diseases (hopefully not both)

[lymebytes]

Hi Erin. Lyme rashes can be itchy. Many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS and ALS.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

No Lyme test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. Is this the test you had done?

When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first. Is this the test you had done?

Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. If you need a doctor recommendation, you can email me at ko_@bellsouth.net or send me a private message.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

I hope you can get some answers soon.

[Erin]

I have/had a good number of those symptoms, but I've been told it's MS.

I'm pretty sure that they did the ELISA test...I do kind of remember my regular doctor saying something about IVg (IVG?) and something else when he ordered a bunch of tests for me back in august when I developed optic neuritis.

I asked them for copies of my medical records, and they only gave me records from last year and this year. I had to go back and ask for the report about the rash I had in 2000. They didnt give me the paperwork that has the results of the Lyme tests.

I just have enough suspicion that it could be Lyme...my neuro looks at me like I'm nuts whenever I ask about that, and my regular doctor says that the test(s) he did for that came back negative, so I'm not sure how to convince my regular doctor to do more testing (I know I cant convince the neuro) and I'm hoping that the doctors at the MS clinic will know something about Lyme and maybe I can convince them to do more thorough testing.

I think I saw that you can order a blood test kit from some place (Igenex?) and you can take it to your doctor, have them do the blood draw and then they can send the test kit back to the company. I wonder if that's a reliable test. Has anyone here ever heard of it?

I kind of get the feeling that I'll have to become a lot more outspoken (annoying) towards my doctors to try to get them to do more testing. I wish it were easier to convince them.

[lymebytes]

Hi Erin. Yes, it is important to be assertive when it comes to your health care. Doctors are getting paid by patients to help them. If they cannot or will not help, it is time to move on.

You can order the kit from IgeneX and have your blood drawn and sent back. You can call IgeneX at 800-832-3200 for details.

In my opinion, when you may have Lyme disease the most important you can do is see a Lyme knowledgeable doctor.

[RuthHinWV]

I have/had a good number of those symptoms, but I've been told it's MS.....in august when I developed optic neuritis. I kind of get the feeling that I'll have to become a lot more outspoken (annoying) towards my doctors to try to get them to do more testing. I wish it were easier to convince them.
Hi Erin, Your story sounds so much like mine. I was told I DIDN'T have MS, only 2 symptoms (at that point in time), MIGHT get it in the future, NOW what drugs for MS do you want to start taking? All this insight from a Neuro. I had bells going off in my head, through the tears of frustration; things just didn't sound right to me.

When I went to my family doc he told me, "The only thing wrong with you is you need to get your a** to the MS clinic & get on the drugs". This SOB was no help at all; he even refused to do the blood work to rule out other diseases that mimic MS like Lupus. Needless to say, I walked out on him in the middle of his tirade & switched my records to another doc. I'd been with this man or over 20 years, but I was sick of his attitude & if he wasn't going to help me then by damn I was going to find someone who would.

I went home & started researching MS, because I didn't know what was wrong with me, but I was going to find out what needed done since the well paid SOB of a family doc didn't seem to have the capability or willingness to do so. I found there were several diseases that mimic MS, went to each diseases main page & looked at the symptoms. I was able to rule out all the diseases except Lyme.

So, next day I went to a quick care clinic, asked for a doc who would be willing to help me with the blood work & got the guy I needed. He was willing to draw the blood for the tests Igenex recommended, Westernblot IgG & IgM plus the PCR. He also agreed to send the blood to Igenex per my request. I wrote a check to go along with the lab work, the clinic picked up the tab on shipping & I then had to wait a month to get the results back.

The doctor at the clinic called me to say he had a copy of the results for me to pick up. I got them, went to my car to read them & there was the word that changed my world, EQUIVOCAL. This means maybe, but hey, it wasn't negative. Yeah it wasn't positive, but at this point it was enough in my mind to rule out MS. I screamed YAAAHOOOO so loudly I hurt my throat, then I got on my cell & called my mother. ha ha

I forgot to mention, the beginning of this little trip all began with my vision messing up in my left eye. My ophthalmologist said I had optic neuritis. He ordered an MRI which in turn showed leasions on my brain. I had a copy of the films made to take to him, so I saw the films before he did. I researched to find out what the spots were, because I knew they weren't normal. MS was the only thing I found & was scared to death when I saw him. He tried his best to reassure me & said, "You're too old (age 44) to just be getting MS. He didn't know about Lyme, but he did know MS couldn't possibly be the answer.

I have had many tense moments with doctors between 2002 (tick bite & symptoms) to 2003 (found LLMD). Let me tell you, any normal person gets more than sick & tired of being treated like an idiot & paying big bucks to have someone treat you like that. You have to find it in yourself to stick up for you!!! Do your research, find as many answers as you can on the Lyme thing, go to a different doc cause the one you're with isn't going to change gears just for you & the most important is to find a doc somewhere who'll do the blood work, send it to Igenex (an excellant company) & will give you a copy of your tests when the results come back.

You have to become your own doctor in a way; they don't like it when you know more than they do, but when they aren't willing to update their education & knowledge base, then they're worthless to you. That sounds harsh, but that's the way you have to start thinking. If it means yelling, then yell it is. It took me 8 long years with a shrink to get this way; I use to be a huge doormat. But let me tell you, they're willing to take your money, put you on drugs that you shouldn't be on & not look back when you aren't feeling better.

My belief is, why not go on the antibiotics for 6 to 12 months; it's not going to hurt anything & in that time you might see an improvement & then know for sure Lyme is the answer & not MS. True MS will not respond to antibiotics.

You may have to travel a bit to find a Lyme Literate Medical Doctor (LLMD), but it's more worth the time than you will ever know. This will be money well spent!!! I had to travel 356 miles/month to see my LLMD.

Best wishes to you!!!! Ruth H in WV :)

[Erin]

I had optic neuritis in my left eye too! Started in August of last year, and is just now starting to improve.

I know just a teensy bit more than the average person about some medical stuff. My family is full of medically trained people (no doctors, just nurses, nurse anesthetists, nurse practitioners, xray techs, and paramedics) I'm not medically trained myself, but I've learned a lot from the relatives from sitting around the dinner table at Thanksgiving and listening to all the medical people talking about gross disgusting medical stuff.

Oh...and I've taken anatomy classes and medical terminology classes to get a certificate to be a medical transcriptionist.

So, I know what a lot of the words in all my medical records mean without having to grab a copy of Gray's Anatomy or a medical dictionary.

I just have hard times convincing doctors to at least consider what I'm asking because the three doctors I have now (opthalmologist, regular doctor and a neuro) all know that I've taken these classes, and they think I'm just self-diagnosing myself. I'm not self diagnosing myself...I'm educating myself so that I'll know what people are talking about when they use all those big Latin words.

The only reason that I'm questioning the MS diagnosis is because I can remember having tick bites, and a rash very close in time to each other...and most of the symptoms that I have appeared AFTER the ticks feasted on my blood. It just annoys the heck out of me that the doctors pretty much dismiss everything I say or ask.

Hell, they didnt even believe that I had anything wrong with me when I went to the doctor at the beginning of May LAST YEAR complaining that my right hip and leg were numb. Actually saw the Physician's Assistant, and not the actual doctor. She told me that I sprained something, told me to put HEAT (bad, bad juju!) on it. (heat is bad for MS, makes symptoms worse...I'm assuming that you get a similar thing with Lyme)

That PA is the same person who mis-diagnosed my mononucleosis as a sinus infection, and she's also the same person who saw me when I had the rash that I suspect could be a Lyme rash back in 2000. The mis-dx of the mono didnt exactly instill a lot of confidence in me for her abilities to diagnose correctly. (she also constantly would Rx antibiotics for strep throat that I'm allergic to...allergic to because she gave me amoxicillin for my "sinus infection". Certain antibiotics cause a rash with mono)

At least when I went to the eye doctor, he could tell that something was obviously wrong with me. My regular doctor, I think could tell there was something going on, but since he only saw me when I complained about the vision problem, and the PA didnt really note that I had fairly serious numbness in my leg last year, he didnt catch the connection between my eye and the numbness.

I've come to the conclusion that doctors are most of the time just guessing when diagnosing...and they get offended when you question the diagnosis.