posted
My physician thinks I might have MS or Lyme (along with other possibilities) I have been only sick for a month and have seen a neurologist who did a typical neurological exam and didn't make too much of it. My physician only ordered a lyme titer which came back negative, but I hear that this test is useless. Other tests I've taken were a CT scan ( to rule out a tumor or anyeurism) and bloodwork. I am on my way to the neurologist tomorrow to get worked up for MS. At the same time, my physcian also reffered me to a lyme specialist. Because the prices of tests and specialty doctors cost so much, my question is which direction should I take? Am I jumping the gun too soon? Should I wait for my neurologist to do the work up for MS before I see the lyme doctor? Will they do similar/overlapping tests that I will have to pay for twice? Basically, I'm not sure if the lyme doctor at this point is absolutely neccessary and was looking for your guys' opinion. Thanks.
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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Can I request a Igenex test from my neurologist? I don't want to see my regular physician again as I think he is useless. If my neurologist won't order a test from Igenex, where do I have to go to get one? Will a lyme specialist order one for me? Thanks
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Good grief! You've sure learned a lot in a month of illness. Good for you. You are very lucky that you have.....
If you know about Igenex, I'm sure you know you can easily call them and ask about the tests you need done.
If you don't like your docs, find another one.
Good luck.
Posts: 1366 | From Southeast | Registered: Sep 2005
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bettyg
Unregistered
posted
quote:Originally posted by jkamyiu:
My physician thinks I might have MS or Lyme (along with other possibilities)
I have been only sick for a month and have seen a neurologist who did a typical neurological exam and didn't make too much of it.
My physician only ordered a lyme titer which came back negative , but I hear that this test is useless.
Other tests I've taken were a CT scan (to rule out a tumor or anyeurism) and bloodwork.
I am on my way to the neurologist tomorrow to get worked up for MS.
At the same time, my physcian also reffered me to a lyme specialist.
Because the prices of tests and specialty doctors cost so much, my question is which direction should I take ? Am I jumping the gun too soon?
Should I wait for my neurologist to do the work up for MS before I see the lyme doctor?
Will they do similar/overlapping tests that I will have to pay for twice?
Basically, I'm not sure if the lyme doctor at this point is absolutely neccessary and was looking for your guys' opinion. Thanks.
Welcome! WOW, you've had a lot time in 1 month! Glad you are agressive on this though.
I'm sending 16 pages by PM, private message, of newbie links/advise including info on IGENEX western blot testing.
Any MD can order this, but they have to SIGN, DATE, & SHOW DIAGNOSIS CODE on for insurance billing purposes ok. Bettyg
do you have a list of LLMDS for your state? Reply back to me by PM when I send you my links/advise ok!
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posted
Thanks for all the help guys. It has been really informative. But I guess there is still one thing I need help with. The lyme doctor charges a lot of money so I want to know if I'm seeing him too early? I want to know if I should see him at the same time I see my neurologist. Should I or should I not wait until MRIs/ept/lumbar puncture lab results to come back from my neurologist until I see the lyme doctor.
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I vote Lyme treatment all the way
Ps document everything.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
hi there, welcome. i would say to go for a neurological workup to rule out ms then if that is negative and they have no other findings then puruse lyme. your neuro should do a mri, evoked potentials, emg, depending upon your symptoms.
good luck karen
Posts: 68 | From uxbridge, mass | Registered: Jul 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Because lyme should be a clinical diagnosis, I would hold off ordering tests you pay for out of pocket until you see a LLMD. My llyme doctor didn't feel the need to order tests from Igenex to confirm what he already knew. He used the lab my insurance paid for to track the disease. Do get tested for co-infections. I had 3 for sure.
Yes, ruling out other diseases is important, however MS is now thought to have an infectious trigger, at least in some cases, so abx could benifit you whether you have lyme or MS.
Other isses like food sensitivites and yeast will come into play and CAN"T be blown off. I knew I had lactose intolerance because issues after milk or ice cream.
Imagine my surprise that when I COMPLETELY gave up wheat for three weeks I was completely pain and fatigue free. This was post abx and diflucan for yeast.
When I tested wheat last week by eating one slice of pizza, pain returned 4 days later and what I though were seasonal allergies, which had been stragely absent this summer returned. They have easied a week later
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Look here's the thing,
You can go the mainstream medicine route and go thru all the worry,wait and pain a neurologist,rheumatologist and psychologist is gonna put you thru...
EMG tests really hurt so do spinals....and they're not even good to detect lyme...
IF it were me, knowing what I know now about all the variables and mistreatment of four different colleges of medicine I went thru....
I would get the IGENEX western blot test FIRST!
If it is lyme....you will get negative readings on all the other tests anyway...although some lymies do show brain lesions...the problem is getting a lyme literate technician to read them properly...as to what caused the lesions...
Besides...there are many folks who believe MS is caused by a spirochetal infection that the ducks have'nt even isolated yet!
Good luck...save time and money and have the lyme test first.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi and welcome!
A western blot from IGeneX is a great starting place for only aout $190.
Contrast that to thousands for a huge battery of MS tests - some invasive and not that pleasant.
If you should turn up positive on a western blot, you might save yourself a lot of unpleasantness (read that: lumbar puncture!).
You've already said that a neurological exam was unremarkable.
So before digging deeper, I'd look for the easiest test -- ANY doctor can sign for it and your local lab can draw it and send it off.
An LLMD is best to diagnose you clinically even without test results but while you're in this quandary, this might tip the scales for you.
Best of luck, and read till you're cross-eyed -- it will all help!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by firepipersnurse: hi there, welcome. i would say to go for a neurological workup to rule out ms then if that is negative and they have no other findings then puruse lyme. your neuro should do a mri, evoked potentials, emg, depending upon your symptoms.
MRI scan of patient with lyme disease who has multiple sclerosis-like lesions
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I'm not a medical doctor. This isn't medical advice, just my thoughts on the matter and what I would do.
It's difficult for anybody to give you the answer you want, because we don't know what you have. Most likely, a neurologist will look at your negative Lyme titer and say you don't have Lyme.
There are people who have been diagnosed with MS who later found out it was actually Lyme.
At some point, you probably really want to rule out or know if it is Lyme. If that's the case, then the only way you will really know is to see an LLMD. You can get recommendations on the seeking doctor forum.
An LLMD is a term used for lyme literate medical doctor. Not all lyme specialists are LLMD's. Many do not believe in chronic lyme.
But I also think a full neuro workup is important if you have neurological symptoms. You don't want to cut corners and miss something.
As far as repeated tests, get copies of all your test results and slides. Bring them with you to the next doctor so they know what has already been performed.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
In my opinion, I would see BOTH the neurologist AND the Lyme specialist. I know you are concerned about your out-of-pocket costs...but can you put a price on your health?
I have spent the past year going from one specialist to another because I tested negative for Lyme. All other tests came out negative too until I started to get much sicker. By that time, I had to quit my job (lost an income) and was still paying for doctor visits, medication (for pain not treatment) and tests.
I wish I had gone to the Lyme doctor a couple months earlier - then I would still be employed and overall would have spent less in doctors bills and wasted tests and drugs!
Lyme and MS have the same symptoms...wouldn't it be better to treat for Lyme and find out it was MS rather than treat for MS and find out too late that it was Lyme?
MS is not a fun disease, but generally doesn't get bad in a short period of time. Lyme, however, can VERY bad in a short period of time.
Like I said, this is my opinion. This is also what I chose to do. My rhuematologist is convinced I have Dermatomyositis - a debillitating auto-immune disease. The treatment for that could make the Lyme much worse. So, I chose to treat for Lyme first (and so far it's working) and if that doesn't cure me then I can go back to the rheumy for treatment. I won't be any worse...but I just might get better first!!
Also, if either doctor orders tests, you can ask for the results to be sent to the other doctor or ask for copies of the results to keep. There would be no reason to have duplicate testing because of seeing 2 different doctors.
Good luck! Karen
Posts: 154 | From Medford, NJ | Registered: Jun 2006
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quote:Originally posted by jkamyiu: Should I or should I not wait until MRIs/ept/lumbar puncture lab results to come back from my neurologist until I see the lyme doctor.
posted
I'm one of those people who was misdiagnosed with MS for about 18 years when it was Lyme.
I sent my bloodwork to Igenex myself because I suspected Lyme. I also knew MS is a common misdiagnosis. Family Drs and especially neurologists, were NO help.
My opinion: Either go to a lab or get a good dr to take your blood (in the right vials) and send it off to Igenex for the Western Blot test. Call them first to ensure you're doing it right.
Then, you'll know for sure. I WISH I had done this years ago (before disability set-in) when the dr told me 'maybe you have MS.'
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am sort of in the same boat you are in, except I have had Lyme for 18 years and in 2005 finally got a positive test from Igenex.
I spent 16 months getting sicker and sicker with an alleged LLMD. Changed doctors. Both she and the neuro think I also have MS. However, the MRI I had a month ago does not show any lesions just "abnormalities". In particular there were no definie focal lesions involving the corpus collosum. I believe that is a usual spot for MS lesions.
I am having a spinal tap on the 26th. I don't really want to, but have been told it will provide a lot of info, not necessarily about Lyme, but about MS.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Monica, Does that mean you were clinically diagnosed with Lyme for 18 years before getting a positive test result from Igenex? What made you want to get the Igenex lab tests after 18 years?
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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posted
MOnica: you wrote "In particular there were no definie focal lesions involving the corpus collosum. I believe that is a usual spot for MS lesions."
I am newly diagnosed with Lyme and previously diangosed with MS. I do have brain and spinal cord lesions and also lesions in the corpus callosum. My neuro had said this was common location for MS also. Anybody out there know if lesion in this area also caused by Lyme?
Jill
Posts: 49 | From Orlando, Florida | Registered: Jun 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I was clinically diagnosed with a tick borne infection in 1997, although in all honesty my PCP thought I might have Lyme in 1995. He treated me with antibiotics, but the weakness in my right leg never resolved. Previous tests (MRI, EMG, etc.) didn't show anything.
Went to an LLMD in 2005, he sent my blood work to Igenex and I tested positive for Lyme. However, under his care my condition deteriorated and I started seeing another LLMD in July 2006.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
quick questions you say your not sure if its ms or lyme, what are the symptoms that you have?
Posts: 41 | From new jersey | Registered: Apr 2006
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posted
I too was one they thought had MS instead of lyme. Igenex is where I finally tested positive for lyme. My regular doctor did however want and did rule out MS, of course I had medical coverage. Those without medical coverage I have learned thru the yrs. that if you go to the hospital outpatient services for the tests you then can file for charity care, often getting the bill greatly reduced or winding up oweing nothing at all. Hope this helps.
Posts: 374 | From NJ | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Hi Jkamyiu-
First- I think you're pretty lucky that your DR even thought to refer you to a lyme specialist! IMO, that's a good indication of some basic competence and willingess to keep an open mind.
I don't know if this will help, but I went through the MS vs.lyme diagnostic thing earlier this year, and to answer you, the tests by neurologist, LLMD etc. did not overlap.
Both my neurologist and LLMD wanted a lumbar puncture done, but it was only done once.
Other than that, the tests were completely different. My neurologist did nerve conduction studies and an EMC(?), ordered a brain MRI, and he performed a fairly brief and a definitely useless cognitive test. As others have said, those tests adressed the possibility of MS- none were about lyme. My insurance covered those tests, so I don't know how much they were.
My LLMD, when I made it that far, had 4 labs test my spinal fluid and blood for Bb and for many coinfections- I had been exposed to deer ticks literally coast to coast, so anything was possible. The total cost for a 3 hour initial initial visit and for 3 of the labs' work was under $800. Igenex was another $800, but that was for LOTS of tests.
I was fortunate enough to also have a SPECT scan done at Columbia- a hugely expensive $2,000 test.
The test was NOT necessary for diagnosistic purposes, but it gave additional information about the state of my brain- (global encephalitis), which has helped determine a tx path.
Last, I did a lyme evaluation/neuropysch testing at Columbia which was $3,000. The lyme eval was redundant for me, given my great LLMD. The testing helped me understand what I had been experiencing for several years, and gave me words for how exactly I was cognitively deficient. IMO, though that testing/expense would be better warranted if a competent LLMD was having difficulties determining MS vs. lyme.
Unlike anywhere else in the US, Columbia's neuropysch testing is based on extensive knowledge of lyme,and it is designed to detect cognitive difficulties unique to lyme.
That's the whole universe of relevant tests that I am aware of.
Hope this has helped more than confused.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Another test that noone has mentioned that could be definitive for Lyme, but not MS is the CD57 test. This is a specialized immune system test -- somewhat controversial, but then everything related to Lyme is controversial.
If you know you were bitten by a tick or live in an endemic area then my advice would be to go to an LLMD and skip the neurologist for now -- you can always do the MS evaluation later but treatment of tickborne diseases is much more time sensitive than MS treatment.
Hubby had Parkinsonian tremors which progressed to myoclonus and seizure-like episodes. The first 13 neuros all said anxiety-depression. The 14th neuro was an LLMD but even he missed the coinfections of Babesia and bartonella. Hubby also has 4 or 5 brain lesions and elevated antibodies to myelin in the bloodstream, but not in the CSF.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I have had at one point or another for over a month: headaches buzzing in ears (constant) photosenstivity (constant) blurry vision hearing sensitivity feeling of pressure around my head neck pain, pressure feeling out of it, confused dizziness, nausea loss of balance, tingling in legs, numbness tingling in face, numbness feeling that my blood vessels are dilated and tender chest pain trouble breathing chills trouble sleeping abdominal pain constipation just a general feeling of sick and tired
I've never had the bullseye rash though, and I haven't been aware of any tickbites. My doctor ruled out diabetes, rheumatoid, b12, epsteinbarr, mono, had regular CBC,etc, everything you guys went through. This led my doctor to think its a neuro problem like MS or an infection like lyme. Had lyme titer which was negative, but as you know that test is useless. Besides the two main culprits (MS/Lyme) what do you think I could have?
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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posted
seibertneurolyme, Your husband went through 13 neurologists but none order MRIs to look at brain lesions?
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi JK
They symptoms you list are All lyme and co infection symptoms except the blood vein one--
Its Very good you posted you Symptoms List- Keep doing it --Your list gives folks good info on your situation so you will get better info (accurate) in return- Quickly-
Loads of people on LN had been DX with MS- I think docs just say MS if they dont have a clue what the problem is-
Have a WB test done--Keep in mind that the WB test is Wildly Inacturate- so dont give the test results much weight in your disisions--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I went the MS route first, against my better judgement. My work and recreational pursuits involved many exposures to ticks. I had undiagnosed fevers and flu-like illnesses that went on for years.
Docs would'nt listen since Elisa/Western Blots were negative. So being the trusting soul I was I went with the MS thing-had all the tests, Lumbar puncture, everything was negative except an MRI that showed 3 lesions.
Still no Dr. support to pursue Lyme so I went with the MS thing and took Copaxone daily for 3yrs. It just about killed me...slowly but surely I got worse and worse.
Finally found a LLMD who listened and knew what to look for and where to find it. I have Lyme and Babesia. I am being treated and in 5 months have slowly but surely gotten better and better.
My point is to go with the Lyme testing first. If you don't have MS and get treated for it the harm you do to yourself if you have Lyme is much greater than treatment for Lyme if you have MS.
Posts: 11 | From Maryland | Registered: Feb 2006
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posted
for lyme sufferers, do you feel symptoms constantly or intermittently? or somewhere in the middle?
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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Hubby has had 9 brain MRI's in the past 5 years. His main symptoms are Parkinsonian tremors, but the tremors are atypical -- shakes too fast, shakes in his sleep, has intention and resting and action tremors all -- not just resting tremor. For this reason the first 13 neuros all said anxiety/depression. Anxiety tremors are supposedly the fastest tremors. Psychotropic drugs and Parkinson's meds did nothing for symptoms and caused side effects on top of the real problems.
Anyway, the neuros said the MRI's were not relevant since hubby had no other MS symptoms -- no nerve pain or numbness or tingling etc.
Your list of symptoms looks a lot like the typical Lyme and tickborne disease symptoms. Many of the symptoms you list are not common with MS. I kept telling hubby that unless the diagnosis could explain all his symptoms then it was not the right diagnosis or he had multiple illnesses.
With hubby once he developed a symptom it never really went away and he kept getting new symptoms. The severity of the symptoms does change from day to day. With treatment some symptoms have actually gone away. Still has a long way to go, but hubby is slowly improving.
Good luck and keep asking questions. Remember doctors are only human and some docs have a total inability to think outside the box. Medicine is NOT an exact science.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
The two doctors I am seeing now are believers in Lyme (which is good since I have a positive test from Igenex!!) but want to see if there is MS as well.
Quite honestly, what I went through at the hands of a supposed LLMD for sixteen months is making me very skeptical of all doctors. I think we should all have a bit of skepticism since there's a reason why they say they are "practicing" medicine.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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I have had all of the symptoms you listed including my blood vessels looking super dilated...don't remember tenderness though.
I have/had lyme, ehrlichia (hme & hge) and babesia.
Go to the LLMD asap.
Take care.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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