posted
First of all hello my name is Matt, I'm from Kentucky, and I'm new to the forum. I have come in in search of some answers to my current situation. I apologize if this gets lengthy, I'll try to keep it short.
In a nutshell I was diagnosed with multiple sclerosis in 2 days though my symptoms didn't start until being bit by a deer fly which can carry Lyme's disease.
To start I am an active healthy 24 year old male with no diseases or health problems (that I know of) and not on any medications.
So I work for the city and I am outside all day every day. Monday, June 1st 2009 I had a bothersome deer fly buzzing around while I was mowing. So I look down and he was sucking the blood from my left forearm. I gave him a smack and went on about my business.
The next day (Tuesday) I go to work and notice that I have a golfball sized swelling under the bite location. I also noticed a couple of small reddish brown spots on the inside of my elbow joint (same arm, about 6-8" from the bite) that were not there before.
So all was well until Wednesday. Everything was fine and when I left home to go back to work after lunch I felt very sluggish and uncoordinated. My boots felt very heavy and I seemed "out of it." I continued to work and the symptoms somewhat went away until around 7:00 that night.
The feelings came back twice as bad as before. Very sickly feeling with confusion and the right side of my body began to feel like it was shutting down. Tingling right side of face/lips, weak arm and leg, and poor motor skills. I took an advil and went to bed hoping it would go away.
Well when I awoke, it was still there. I had trouble telling my arm/hand what I wanted it to do as well as my foot/leg which made walking difficult. I went to the doctor and he did a blood test and ordered a CT scan. He also noticed my right side/shoulder "slumping."
So the blood test came back negative and I went to have the ct scan with contrast done on my brain. It came back that I had 2 "spots" one on the left and one on the right.
The doctor assumed that I had a mild stroke. Crazy to hear at 24 years old. Anyway he ordered an MRI the next day to confirm. So I take the MRI with contrast as well and wait for the results.
My regular doctor went on vacation and handed my case over to another doctor. They call me and said that those 2 "spots" are lesions of white matter on my brain. They proceed to tell me that they have set up an appointment to see a neurologist, and that they think I have multiple sclerosis.
I went to see the neurologist which was very shady considering he was in a little shanty office using a school desk. He didn't even have the equipment to observe the MRI scans. He held them up to a light bulb and says "Yep looks like you have MS." He proceeds to tell me that he's writing a prescription for steroids and Rebif so I could take shots every other day for my "MS." He wanted me to start immediately. It was like a punch in the face.
I tried to start taking the steroids to help my right side but they made me feel terrible. Extreme back and leg pain as well as nausea and disorientation.
So I'm a little weary about them coming to these conclusions in 2 days time. Especially when he said "I'll schedule for you to have a spinal tap but it doesn't matter because if it comes back positive or negative, you still have MS.
Saturday my right side functions seems to have return and I have since gone back to work. I have been doing research on Lyme's Disease and my symptoms are very consistant with it.
I am seeing a NEW doctor Saturday which has seen Lyme's cases before to have some tests run to see if that what it is. I also have another appointment scheduled for the 15th of July with another neurologist to get a second opinion on this multiple sclerosis.
I'm not in denial it just seems like I was diagnosed really fast without having tests to rule out possible Lyme's disease. The last thing I want is to give myself shots to treat something I may not even have.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
WELCOME!!
You need to find an LLMD for proper testing for Lyme disease. Go to seeking a doctor and post there. Steroids are the worst thing you can take if you have Lyme disease. MS is often a misdiagnoses for Lyme.
Sounds like you could have been bitten in the past, because of the lesions. If the doctor you are seeing Saturday doesn't use Igenex lab, please find someone else who does. Sorry you are going thru this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I am open to taking any test to determine what is wrong but the last thing I want to do is a spinal tap. I've heard horror stories about spinal taps not to mention that everywhere I read to hear about them points out how unreliable they can be. Thanks for the welcome and reply.
Posts: 9 | From Kentucky | Registered: Jun 2009
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You should obtain the radiologist report from your MRI study. Radiologists are MD's who specialize in interpreting the scans, and in the report they summarize any abnormalities and list associated suspected etiologies.
As noted above, steroids are completely inappropriate for Lyme disease (as they suppress the immune system). If you are not responding well, that doesn't mean you don't have MS, but along with the possible danger they impose if you have Lyme, it seems like good reason to decline that treatment. (Note JUST MY OPINION and NOT medical advice!)
Lumbar punctures don't need to be awful. They can be done under fluoroscope, which allows the doctor to have an image to guide the needle. I had one done this way in a hospital radiology dept.
While an LP will not likely help diagnose Lyme, it could support your MS diagnosis. If no sign of MS is present in your CSF, it's greater reason to question your diagnosis. Lyme can cause MS-like lesions.
If nothing else, gather your MRI and the report and see another neuro for a 2nd opinion. It does seem like a sudden dx.
Take care.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
MS is a DIAGNOSIS OF EXCLUSION. It appears there was little or no effor to exclude other (more easily treatable) causes of your symptoms. You are right to have lost confidence in the physicians you have seen so far.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sure sounds like it could be lyme. Agree with the advice above; do not take steroids if at all possible, as they can cause damage to people with lyme disease.
Lyme is a clinical diagnosis, based on tests, history, symptoms, etc. -- it is important that you make an appointment with a lyme literate doctor, as most doctors are woefully ignorant about lyme and possible co-infections. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
MS is a diagnosis of exclusion, meaning that the doctor needs to rule out all other possible explanations of your symptoms before he can say for sure that you have MS.
The little video on this site may explain why this doctor wants to start you on meds so quickly--to avoid another possible "MS" attack.
Since the doc doesn't know much about lyme disease, he isn't thinking of this possibility. You are right to go to a good lyme specialist to find out if this is what is causing your symptoms.
I certainly would not take steroids at this point since there is a possibility that you have lyme disease.
Lyme can cause all the symptoms you describe. I had two bright spots on my brain also.
I recommend you see a lyme doctor who follows the Burrascano lyme treatment guidelines. They are found here:
More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
A Burrascano type doc got me well. It has been 4 years since I finished my lyme treatment. I have sent many friends and acquaintances to Burrascano type docs also and they have recovered from lyme disease.
So, I agree that you should pursue the lyme diagnosis. The docs with their MS diagnosis will still be there any time you want them. Better to have lyme disease and get treated and get well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
If it were me I would get a western blot IgG and IgM from Igenex lab in CA....test #188 and #189...total cost $200.
I would pursue properly ruling in/out lyme with a LLMD before settling on a diagnosis of MS for which there is "no known cause"....which then means no known cure.
Don't expect any non-LLMD to know anything about how to recognize and diagnose or treat lyme.
I agree that you very possibly were infected in the past and just started having symptoms.
I hope you get the help you need.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
It does sound like lyme to me. Many cases of MS really are lyme, and it's sad how many people have no idea and/or some are just really opposed to the idea that it could be, which confuses me because they'd rather have an incurable disease than something like lyme that CAN be treated. Many people with lyme have white matter lesions as well, so it gets really confusing.
The thing I am questioning though: I have no idea how fast lesions in the brain develop, but I'm questioning whether the two you have could have developed that quickly since June 1, 2009. Maybe you've had these lesions (and possibly lyme) a lot longer than you think. Maybe the new bite is what triggered the lyme to come out of hiding (the lyme bacteria can hide in our body for as long as it wants, coming out in times of stress or when our immune system is not working at its best) making it worse/making the symptoms come out more.
Please find an LLMD as soon as possible to get evaluated for lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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I agree whole-heartedly with the above comments. Get to an LLMD ASAP. I think it takes some amount of time to get white lesions in your brain, so I agree if it's Lyme, you've had it awhile.
I went down the same path you're starting on 11 years ago when I had an episode where my right side wouldn't work. THey told me I had MS, which I blindly accepted, based on an MRI which showed 3-4 lesions in my brain. THey put me on Avonex, an interferon, which is BAD for Lyme and did not make me feel better. Whether or not it helped me not form more lesions is statistical and who knows.
Skip ahead to 2 years ago, and I found out a lot more about Lyme and started investigating this as a possible cause for the lesions. I quit the Avonex at that time and felt much better overall.
I have consistently refused lumbar punctures, as they don't rule out or in either MS or Lyme and I'm afraid of the pain and exposing my spinal fluid to anything.
This year in the winter, I had a relapse, and my neuro symptoms got worse. I had another MRI and discovered many more lesions, one of which looks like a pacman! I also got a positive Igenx Lyme test. So in my mind I have my answer as to why I developed MS.
Near as I can figure, I was bitten at least 23 years ago, possibly longer since I grew up in MN. I'm 46, so that's 1/2 my life. Just figured that out.
So now I am starting the Lyme treatment and I have also started taking Copaxone shots to try and stave off the demylination while the lyme meds (hopefully) kill the litlle boogers.
Copaxone is not an interferon and my neurologist and LLMD both agree it should not interfere with any of the Lyme treatments.
So that's my story, and I would encourage you to get screened for Lyme by an LLMD and not just accept the MS diagnosis. I wish I had known this much 11 years ago when this all started, I might be better by now!
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
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bettyg
Unregistered
posted
welcome matt !!
when you post in seeking dr. forum, note NO KENTUCKY LLMDS!! there is 1 in tenn, s. missouri, are the 2 closest to you that i can think of.
subject line show the STATES: TENN, S MISSOURI, & any other close by state you'd go to for treatment. ok.
after you break up your paragraphs into SMALLER ones, please copy that text to your new post in seeking dr.
go to lower left hand corner & mark box to receive all replies; send! we'll get names to you that day/night. *************************************************
did you take any photos of this rash or is it STILL there? use a coin or $1 with today's newspaper where you can read it in those photos to show the size & when it occured for later purposes.
i won't repeat all the same info above. here is my welcome letter to newbies; some of the above WILL be repeated below.
the length of your entire post is fine, but please break up your paragraphs into HALF the size they are for those of us with severe neuro lyme who can't comprehend what you typed ok. see my guidelines below in how to do this. huge thanks! xox **************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be!
* Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES!
* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form IF YOU DON'T ORDER THEIR TEST KIT! *
* MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL;
* Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
posted
You've received great advice here. I am like Denise, a Lyme "MS"er. I believe lyme triggered MS for me as well.
I would also advise (strongly) against the LP. Mine was negative for the "O" bands they look for in MS, but I was still "stamped". The chance of finding lyme DNA is about 5-20%. And (it seems) most people end up with the dreaded headache. I have had two LP's, and two spinal headaches. Never again. Just my opinion. God bless you, and let us know how you do.
Posts: 374 | From United States | Registered: Nov 2008
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posted
"* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!"
Ok so if I order the test kit do I just hand it to my doctor and let him handle it or do I ship it off? The problem is, the doctor I am going to see is only in on Saturday and Sunday until 9:00 pm so would it be better to see him Sunday night? Thanks for all of the helpful information. Also, I changed the original post to make the paragraphs smaller.
Posts: 9 | From Kentucky | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
quote:Originally posted by mtm: "* They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!"
Ok so if I order the test kit do I just hand it to my doctor and let him handle it or do I ship it off? The problem is, the doctor I am going to see is only in on Saturday and Sunday until 9:00 pm so would it be better to see him Sunday night? Thanks for all of the helpful information. Also, I changed the original post to make the paragraphs smaller.
Most hospital and doctor's office can draw blood for you if you have the test order. Then just send the package yourself through FedEx.
Posts: 822 | From midwest | Registered: Apr 2009
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bettyg
Unregistered
posted
matt, big thanks for breaking up your entire post; i could read it now well!!
you can go and DOWNLOAD THEIR IGENEX LAB form now so that you make sure your dr. signs, dates it, shows a diagnosis code for reimbursement from your insurance company to you.
then NOT get your blood drawn that day, but go into a blood lab or hospital on mon. or tues. to have it drawn!
have you called to have them send you the blood kit from calif.?? they have RETURN POSTAGE vs. YOU paying for fed ex OVERNIGHT.
fyi, all blood labs have all the correct colored tubes there; they just need all the instructions on how to do this and what to do with blood first before it is shipped!
personally, fill out the form legibly in every space you can; don't count on them doing it completely ... it does not always get done that way. ok.
posted
Thank you Keebler for that link to the controversy of MS and Lyme.
I've been looking for a couple of weeks on this subject.
Much appreciated. Very informative.
Posts: 145 | From Paris, Tn. | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hey mtm, welcome. I would not waste time with a
spinal tap. It is rarely found in spinal fluid even
with Lyme specific labs like Igenex. I would
request a course of antibiotics if you feel
critical. Take for 3 weeks and off all for 2 weeks
and then send samples to Igenex on a Monday.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
PS I was almost in a wheelchair diagnosed with
depression and on my way to a nursing home when I
found out I have Lyme. MS is a syndrome of
unknown origin. Like these guys here tell you,
get copies of all blood work, tests. Invaluable.
My first test when I thought I got it was neg. I
did not know anything about it and went for over
a year sick searching for what it was. I was
extremely active and worked full time most days
18hrs. I fought and found these guys who helped
me to a diagnosis and a LLMD who is now treating.
Don't take MS as an excuse.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Hey guys thanks for all of the helpful information. The doctor is only in on Saturday and Sunday from 9am to 9pm. I will probably go see him Sunday evening so my blood can be shipped out monday morning.
posted
I've noticed that I have slight left side facial pain. Is this common?
It's my jaw (upper and lower), cheek, and under my chin. It radiates to my ear and also causes a slight paint in my temple and on the top of my head on the same side.
Posts: 9 | From Kentucky | Registered: Jun 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Jaw necrosis is medically documented in Borrelia.
Hopefully it is a symptom of Bells Palsy that gets
the right treatment before it gets that far
advanced.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Hmmmm...the docotor sounds like a quack to me. Even if you have MS, it takes much longer than a day or even a week to diagnose it. You generally have to have had at least two attacks on two separate occasions, at least 30 days apart from each other before they'll consider multiple sclerosis.
The fact that you were bitten by an insect and your symptoms cropped up shortly thereafter is one of the primary things your doctors should be investigating. It seems that this doctor probably isn't all that familiar with infectious diseases from insect bites and has only looked at what he's more familiar with...MS.
I don't want to come out and say you have Lyme because it would be careless of me, especially since I'm not qualified to. However, it's certainly worth investigating. It should at the very least be ruled out.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
Well even though earlier this week the new office told me the doctor would be in today and tomorrow, he isn't. Secretary misinformed me. So I guess Monday I will call Igenex and order the kit.
Hopefully I can trust my local doctors office (whose dx was MS) to simply draw my blood for the kit. I'll ship it out and everything myself. I read that it can take up to 2 weeks to receive the results. At that time do I call igenex or the doctors office?
Posts: 9 | From Kentucky | Registered: Jun 2009
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posted
I believe that Igenex will only give the results to your doctor, so you'll probably have to contact the doc. If there's even a remote chance that you have Lyme disease, you should be on something like doxycycline as a precaution. Waiting two weeks to be treated for Lyme has too many negative consequences.
You may want to try and talk your doctor into a couple of weeks of doxycycline. It's much cheaper than MS treatments and the potential is high that you have an infectious disease versus a mystery disease like MS, where no one knows if it's caused by a virus, a bacteria or if it's an autoimmune disease.
If you have a rash or markings from this bite, I would recommend taking photos of them.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
I had a couple of red blotchy spots pop up on my legs. Not sure how they got there. They don't look like any bug bites I've had in the past. Here are pictures of them, I have one on the left by my ankle and one on the right below my knee
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
About a year after I started getting sick I had a
raised rash on both ankles about 3inches across. It
never ulcerated but was bright. And mirror image on
both ankles. 6 months before that I had a
peculiar rash on my neck both sides behind my
ears. It was like a very tight marbling. I asked
a lady with a lot of experience
what it was. She did not know. She had never seen
anything like it. A lot of people have rashes
that come and go. Very bad dizzy spells but I
trodded on. Until my trot was a drag. I would seek a LLMD.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
if there is any way to NOT get the dagnosis of MS on your record try for that. The MS diagnosis can not be removed and it carries all kinds of insurance and life insurance implications. Good luck and keep us posted!
-------------------- ******************************** Thanks and blessings to all who share themselves to ease the way of others Dx: MS 1/2006; Lyme+ 10/2008; in treatment with great success Posts: 22 | From Columbia Gorge | Registered: Dec 2008
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posted
First of all sorry if there are typos and grammatical errors the computer screen is making it hard for me to read and type
Anyway, I went and had my blood test Saturday.
I know I shouldn't have had it taken on the weekend but that is the only time my doctor is in the office.
I was having too much trouble with the Igenex and I am in desperate need to find out what is going on with my body (more about that later).
I expressed my concerns about the blood spoiling and he assured me that it would be fine. The lab is local. Today is Tuesday and I haven't heard anything back yet.
I have been feeling pretty good until today. I went to work this morning feeling "okay" and around 8:00am it hit me.
I started feeling dizzy and lightheaded. Also I seem to have lost the peripheral vision on my right side (consistent with previous symptoms).
I've been (trying) to read up on the optic neuritis that sometimes comes with lyme's disease. It's strange.
I have had migraines in the past and it's very similar to that except I don't have any pain. I.E. Blank spots, grainy vision.
Looking straight ahead, I can raise both hands and wiggle my fingers and I can barely see my right hand.
The left is visible no problem. I really hope I can get some answers soon from the doctors, it's been since June 3rd having to deal with all of this and it's miserable.
By the way I tried this with both eyes (cupped one shut at a time) and it's occurring in both eyes. Grainy loss of vision in my right peripheral.
Not sure if it is relevant but every now and then I will have a pain in my left eye whenever I look to the right.
Posts: 9 | From Kentucky | Registered: Jun 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Try your best to get to a llmd asap. They can help you with the Igenix testing, as they do it all the time.
My llmd draws the blood, sends it out, the whole deal. Then he can determine the best treatment for you in the meantime, probably antibiotics.
Call and explain your situation and they may be able to accomadate you quickly.
They are used to dealing with situations like yours and understand the importance of quick intervention.
Local labs do not know how to test for lyme and many patients end up with false negatives.
Good luck and keep us posted,
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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Shosty
Unregistered
posted
When did you get bitten? If it was recent, then your testing for Lyme is TOO EARLY. A few others have explained this, that it takes time for antibodies to form (at least 6 weeks, as I remember, but maybe someone can correct me).
Your story just does not fit MS or Lyme, to me. Is it possible that you had a small stroke or "infarct." My husband just had one, and in addition to his larger stroke, his MRI showed lots of white spots on both sides.
I know that you are young, but this does happen to young people.
Alternatively, you could be having a sort of toxic or allergic reaction to the bite. This happens to one of my kids, and she gets weird neuro symptoms for a week or so. Benadryl helps. But the slumping shoulder does not fit this picture, really...
It sounds like you were bad off for a couple of days, but then some of the symptoms improved, with some residual stuff. To me, and I say this as someone with both Lyme and a stroke in my house, there is a possiblity of something else like a stroke or TIA going on.
You absolutely have to get a copy of your MRI and MRI report. Just ask the radiology dept. or medical records dept. about signing a release and picking it up. Read the report yourself, and then take it to an MD who is competent. The one you saw, who said it was MS, is absolutely not competent.
By the way, Igenex WILL give results to patients, but only after the MD has received them first.
This is not a situation for quick answers. Don't take steroids, because they can harm you if it is Lyme. When things become clearer, you will know what meds to take.
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posted
Well I went back to the doctor that did the lyme's disease test. I had a different doctor this time and she told me my test came back negative and that I didn't have Lyme's disease.
I told her my situation (dizzy, lightheaded, loss of right side peripheral vision, trouble reading, etc...) and she didn't really have any answers for me.
She took more blood and ran another test, for what I'm not sure. Anyway she came back in and said to keep my appointment with the neurologist on the 15th but for now they were going to treat this as a sinus infection
She prescribed prednisone (steroid) and azithromycen (antibiotic). I have been taking them for 3 days with no noticeable improvements.
I'm still just as disabled with my right peripheral and I still have the dizziness. I requested to have a Lyme's disease test by Igenex but everyone around here is hell bent on lab corp and refuses to take any other route.
None of the doctors will order the kit. I called Igenex and tried to order it myself and just have the doctor sign off and draw the blood but they won't send out a kit unless it's to a physician.
What am I supposed to do? Apparently the closest LLMD is in Tennessee. That's about a 5 hour haul for me. I don't know what else to do.
Posts: 9 | From Kentucky | Registered: Jun 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Many with lyme have to travel to get to a good llmd.
It is worth it as many here will agree.
We travel six hours one way and I know others here travel even longer distances.
It is worth it to get the answers you need, and to get the right treatment.
It sounds like the local mds haven't been much help.
Take care and God bless.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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quote:Originally posted by mtm: I requested to have a Lyme's disease test by Igenex but everyone around here is hell bent on lab corp and refuses to take any other route.
None of the doctors will order the kit. I called Igenex and tried to order it myself and just have the doctor sign off and draw the blood but they won't send out a kit unless it's to a physician.
What am I supposed to do? Apparently the closest LLMD is in Tennessee. That's about a 5 hour haul for me. I don't know what else to do.
#1: My sister has advanced lyme & 3 months into IV antibiotics, she broke out in bull's eye rashes (for the first time).
I hate to beat a dead horse and emphasize this but lyme is a clinical diagnosis.
It's best to find a LLMD.
#2: That said, I have an extra IgeneX test kit.
If you find a doctor to sign off on the test(s), I can send you the spare I have. Just PM your mailing information to me.
Again, even a negative western blot with IgeneX does not mean that lyme can be ruled out.
good luck!
Posts: 571 | From Massachusetts | Registered: Oct 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
What??? This spring I called Igenex and told them I needed to order 4 test kits, they asked for my address and sent them asap.
I am not a doctor. They did not ask. I had a chiropractor write the order for them. No glitches, everything was fine.
Are you sure you spoke with the right person? Is this a new policy change? I would call again and simply say, "Hi, I would like to order one blood test kit", and see what they say.
That's odd, because I was able to order them just fine.
You need to see an LLMD. You were most likely given an Elisa test, they suck, I've had 2 negative ones, 12 years apart. You health is worth it for sure, doc's know nothing about Lyme.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I got one in Jan. with a email request.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
If you are not feeling well enough to make the drive, maybe a friend or family member could go with you.
My husband takes us, and is a great help. I can't keep up with all the doctor says because of brain-fog.
So he sits and takes notes for me.
Just a suggestion.
Linky
Posts: 2607 | From Hooterville | Registered: Apr 2009
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I was completely disabled, with a young child - the ultimate responsibility. I had access to the best medical care in the country in NYC. MS, cancers, Lupus, it was all investigated.
I was bedridden and unable to care for my child. I had all of your symptoms, and many, many, many more - even more severe, believe it or not.
All of the tests and all of the docs could not find out what the problem was - there was nothing wrong with me (that they could diagnose)!
I had Lyme tests all along the way, & live in Lyme-endemic NJ. They were always negative.
I was clinically diagnosed with Lyme by an LLMD after three years of testing for everything under the sun & rapidly deteriorating health. I spent A LOT of time at the MS Institute in NYC. Turns out that was never my problem.
You need to get to that LLMD as soon as you can. I know, I know, it is all so hard to believe - it's so CRAZY! - but it's true. The medical field is WAAAAAY behind the curve on this one.
And, speaking of the deer fly, not to get TOO nutty for 'ya, but I'll go to MY grave saying a mosquito did it to me.
Matt, I'm better now, you can get better too, but it won't happen unless you get to the LLMD.
But, meantime, nothing is wasted. All of the time, money and effort I spent on all of my diagnostic dead ends helped my LLMD to make the differential diagnosis in the end - - - and my response to ABX did the rest.
Best to you, Matt. Wish you knew me, & then you could believe me more easily -
Get to the LLMD -
Onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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