posted
I had to see the neurologist today for my SSD case. He said that all my tests are neg for lyme and my brain lesions look like vasculitis. He wants me to take blood testing for lupus and a few more things
He said he never heard of lyme literate doctors and he laughed that they are just telling people lyme to collect money? I was so upset that I wanted to run away. He went on to tell me that the abx are toxic at this point and harming my body more that is why I hurt so badly.
He said if I am really worried about lyme to go to infectious disase at Stonybrook in long island who are noted for handling lyme cases and running specific tests.
He is more concerned that the lesions could lead to a stroke and no one is taking my case seriously. I am so confused and upset now that I dont know what to do.
DOes anynoe know about the lyme center in stonybrook???? If you have been there, could you PM a doctors name...Appreciate it.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Of course he was against chornic lyme. Practically every single doctor (except for LLMD's) laugh at the thought of chronic lyme.
Are you seeing an LLMD? judging by the meds youre taking I'd hafta assume you are
Go by what your LLMD tells you. not this random ignorant neurologist. He doesnt know about lyme. He probably never will know about lyme. Dont even listen to a word he says about it. You've had untreated and undiagnosed lyme for 3 decades. THAT is why you are in pain. not because of the antibiotics hunni. You're HERXING. and you havent even been on the antibiotics for that long. many people are on them YEARS! the infection needs to be treated. I remember KEEBLER said that yes antibiotics can have some bad effects. but NOTHING is worse than untreated LYME DISEASE. and I agree with her
I had 3 infectious disease doctors look right in my face and tell me I didnt have lyme. I knew they were all full of complete crap
I'll never forget the last ID doc I saw looked at me and LAUGHED and said "no ones ever died of lyme disease. its been around since the 70's and no one has died from it"
that was quite possibly the most ignorant statement ive ever heard a doctor speak. absolutley rediculous
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
i was doing well in treatment of lyme, until i saw a neurologist who said , and i quote.. "lyme disease is easily treated with doxycycline. no other antibiotic would have an effect and chronic lyme does not exist" i also had white spots on my mri.. i am only 24 and have no vasculitis, dont suffer migraines, and do not have MS.. so i can only imagine they are from the lyme. I went on a downward spiral because she freaked me out and i stopped abx.. and got much sicker. i started them up again and am getting better.
there is so much gray area, i cant stand it. but if she doesnt believe in chronic lyme, and sent you to an ID center, they will most likely diagnose ONLY by a CDC positive blood test, and they will treat you with the bare minimum, so i wouldnt waste my time/money if i were you.
good luck
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
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Practically every medical professional out there in this world (except LLMD's) do not believe even for a second that chronic lyme exists.
Watch the documentary "UNDER OUR SKIN" and youll see just that. No one gets told they have lyme from a regular doc. Thats why we end up sufffering for so long!!!!
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
annier, are you suffering from nerve pain? If so, I think some abx can make it worse...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
Stay away from Stony Brook. They did a spinal tap on my son. They looked me in the eye and told me that he absolutely did not have lyme disease. When I got a copy of the spinal tap, he was CDC positive. 7 bands positive on IgG. They will not diagnose Lyme even if it is staring them in the face!
Posts: 89 | From Long Island, New York | Registered: Mar 2007
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As you know I have been having similar doubts about Lyme & co's diagnoses. But please don't let that guy frighten or upset you. He sounds like the epitomy of the typical "specialist" that believe they are too smart to bother keeping up with the latest medical research. Even the mainstream Neurologist and the mainstream Infectious Disease Doc I'd seen did not dismiss Lyme totally. Although they both thought I could not have Lyme because I was on doxy for so long, they at least said "Hmmmmmm, don't know. Could be Lyme, but could be something else." Just the fact that your Neurologist was so arragant and dismissive kind of tells he likely doesn't know anything.
Also, FYI, my exhusband's niece was diagnosed with Lupus. A year later was found that diagnoses was an error, in actuality she had Lyme.
I know it's so hard and unfair that we have to almost be "our own doctors" Just how long have you been on antibiotics anyway, that he said you were already damaging your body?
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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posted
You definitely need to stick with a neurologist to get his evaluation on your brain lesions. Brain lesions are not very common with Lyme, but some do get them. Don't have "lyme goggles" on as a lot tend to do where you ignore everything else because of a lyme diagnosis.
Posts: 306 | From NY | Registered: Sep 2010
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
When the question about lesions was posed to our Dr. M he stated:
"The typical lesions from Lyme disease are small multiple and superficial on brain MRI."
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I agree with nybasketball..
Had I had my "lyme goggles" on I would have missed a very rare and dangerous brain condition that had absolutely nothing whatsoever to do with lyme. Had I attributed every finding and every symptom to lyme I could have been severely disabled by now with a seperate neurological condition that fortunately does have a surgical treatment.
I actually had numerous LLMD's who missed this other diagnosis and one who said that it was not a big deal. Well it was a big deal - a huge deal so sometimes even the LLMD's miss the boat because they are not considering alternative causes for symptoms.
Eventually, I needed brain and skull surgery in addition to abx.s.
I got this other diagnosis WHILE in lyme treatment and continued with lyme tx during and after surgery.
And as a matter of fact my Neurosurgeon required me to continue with lyme treatment for a certain amount of time before brain/skull surgery would be done due to the overlap in symptoms between my two conditions. He is not Lyme literate but he was open to the idea of differential diagnosis and I think we all need to be open to the idea of differential diangoses for some symptoms.
Yes, lyme can cause brain lesions but so can numerous other medical conditions and better to be safe then sorry. IMO/E one should never assume everything is lyme - even though many things are - because in doing so you might be ignoring a condition that needs your attention
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
WHat are your symptoms by the way, could they also match vasculitis? And what does neuro suggest for you as treatment?
Posts: 723 | From Montreal | Registered: Oct 2010
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Many lyme patients have brain lesions. If you go the steroid route and get worse .. then it's going to be very hard to go back to Lyme treatment and get well.
Proceed carefully.
(forget Stonybrook)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I have white lesions, pineal cyst, slight cerebal atrophy on my mri. the Neurologist was the one who dismissed it because she thought my physical exam was normal. It was my new LLMD that saw it and said - no this is far from normal, who told you not to be concerned?
So I guess it's about the individual doctor not necessarily whether he/she is LLMD or not.
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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posted
Thank you everyone. I just woke up..had to sleep off my confused headache.
My issues stem from an ear surgery 30 yrs ago that led to permanent vertigo. The surgery is no longer done due to this complication. All, even my llmd agree it was a barbaric surgery.
I was able to function for 30 years with the dizziness and medication and hold a great job and get a masters degree this past May. I had been bitten twice in three years that I know of with ticks in Dutchess county.
As of June I could not longer function with the vertigo and weird anxious feelings like my whole body was shakign inside, nystagmus and had a hard time adding simple numbers and remembering. My job is accounting for the NYPD payroll so this was impossible. I have been out of work since then. I could not longer make my way down the subway stairs to even get to work or walk anywhere.
Since I am clinically diagnosed only I have been on abx for goin on four months now and have very bad muscle and joint pain. Just had a spine MRI yesterday and already had knee MRI's showing arthritis? I started havign depression and strange feelings of being out of my own body when in crowds of any kind.
Thank you for the advice on stonybrook, I was just about to make an appt when I read these posts. Looking at their information site it seemed they believed in late term lyme as they called it and IV therapy.
This neuro said I am damaging my body and inner ears being on three abx for four months now. He made me so angry but like he said, "I have so many other issues that it has to be looked at". He copied every test and doc report I ever had and is reviewing them. He said he had more questions for me than I had for him.
He truly laughted at the words lyme literate doctor!HE said he reads all the journals on lyme and it is for sure that there is no need for long term abx therapy and it is controversial which I already knew. Due to my family history of my father have mini strokes and dying of massive stroke and his brother havign the same. He said my llmd should have looked at vasculitis and hardening of my brain arteries and stroke first?
I am afraid to tell my LLMD since he may get angry that I went to a neuro..but had no choice for my ssd case? They dont beleive in lyme either and want to see what a neuro says aobut my vertigo. I just want to give this all up..so tired and sick...
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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MY regular docs dismissed my MRI also??? said many people have this and it could just be migraines.
MY LLMD took one look and said "this is NOT a normal MRI" and said we need to treat it now. Same thing..
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
I had been bitten twice in three years that I know of with ticks in Dutchess county.
That pretty well sums it up.
I WOULD be concerned about zith affecting your ears. He's right on that one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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onbam
Unregistered
posted
I believe Stonybrook's the haunt of Ray Dattwyler, one of the people most responsible for our suffering.
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Yes, stay away from Stony Brook.
Annier, never never be threatened about what your LLMD might think or hesitate to talk to him.
Get yourself to one of the lyme literate neurologists I sent you and then you will have a good basis for comparison. That's the only way you will have some peace of mind.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
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posted
P.S. while it's standard to get this kind of B.S. from non lyme literate doctors remember also that he is a disability doctor. To begin with they get paid next to nothing because most of them are bad doctors and can't find better positions but also it's
his job to dispute things. It's his job to deny you benefits. That's how they play the game.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Exactly right - couldn't have said it better myself!
quote:Originally posted by Abxnomore: P.S. while it's standard to get this kind of B.S. from non lyme literate doctors remember also that he is a disability doctor. To begin with they get paid next to nothing because most of them are bad doctors and can't find better positions but also it's
his job to dispute things. It's his job to deny you benefits. That's how they play the game.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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He is not an SSD neuro....the SSD caseworker is trying to push me through and said that I have no reports from neurologists and that is what the SSD docs were looking for so she told me to go to one. THis is the one a friend suggested.
After his craziness, I didnt even mention anything further. What is a nerve test on my arms going to do for my failing brain!! I am tired of being poked and prodded already.
I guess stonybrook isnt that great. Wow, I am staying away from that one. I did email my LLMD about what happened so he is aware. Will see what he has to say.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Annier your post was unclear about whether or not it was an SSD neuro but it doesn't matter whether he's an SSD neuro or not.
I have given you the name of an excellent LL neuro several times. Why even waste time with another idiot like you did today? Can't you see how everyone who responded has had to deal with the same idiocy from these doctors who know nothing about lyme.
Go to the LL neuro I suggested to you and put your mind at ease and he can help you withwith your SSD application, as well if not more than the jerk you saw today.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
Abx I did call the one you gave me. Next appt is in two months. SSD wanted me to see a neurologist and get them a report on the lesions now. In two months my case will already over so I had to get to a regular neurologist from LIJ.
I didnt forget to get appt with the one you gave me.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Abx I did call the one you gave me. Next appt is in two months. SSD wanted me to see a neurologist and get them a report on the lesions now. In two months my case will already over so I had to get to a regular neurologist from LIJ.
I didnt forget to get appt with the one you gave me.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
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posted
Oh that's a drag. I hope you are on a cancellation list. Have you spoken to your LLMD for any ideas or help?
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Your right on the zithro concern and my inner ears. I have grown dizzy again since using it and my ears NEVER stop ringning. THinking its the zithro.
I will ask them to change it. I have not even reached the max dose yet. Next week I am suppose to start taking it twice a day. He upped it every two weeks to wean it for my ears. Thanx for you help
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi folks...thought I would chime in.
Before my lyme dx I did the neuro route. Had a brain MRI which showed two small foci (spots) and a suggestion of atrophy in my parietal lobes. This prompted a follow up SPECT...which was really abnormal.
Around the time I got my SPECT scan is when I also got my IGENEX results from my LLMD. Lyme (obviously now.)
So...just wanted to let you know that after 10 months of oral antibiotic treatment, my follow up brain MRI was NORMAL. My spect is still abnormal but is improved.
Making progress. Onward and upward!
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Abxnomore
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posted
Glad that you shared this uplifting news with us.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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My neuro was a crazy man. I am not cdc positive on igenex but being treated by an llmd right now. THe neuro says there is not such thing as a lyme literate doctor and cdc negative means negative and it is not lyme.
He then had me believing I am about to have a stroke or aneurysm from vasculitis of the brain. He said the only way he would believe these lesion just got here from lyme is to see an MRI from before that was clear!!!! I had many cat scans of my brain due to a surgery that were all clear but not an mri. He said cat scans are useless so until I come up wtih an clear MRI from before this, it is ridiculous to believe lyme!
ABX. I left an email about the visit with the doctor and have not heard back. It is not like my LLMD will call me back..he said to email his PAA with any questions. She will probably get back to me today.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Stonybrook at one time, many years ago, was actively helping Lyme patients. They went turncoat and joined the Steere gang in his cronies. Pat Coyle is one of the neurologists who did. Too much heat in the kitchen and careers at stake to tow the line.
At one point early on in the 80's even Alan Steere took the disease seriously. People were actually put in the hospital and got care and IV's. Until politics, greed, patents and $$$$ got in the way. The Steere cronies changed their tune and went against much of their earlier published research indicating how serious a illness Lyme disease was.
Now they are happy to consult for insurance companies to make sure patients get denied, are called nuts or given false diagnosis and keep them from getting proper treatment. It's criminal what has been taking place and what continues to.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I think we are confusing apples with oranges.
The SSDI doctor is useful for one thing: getting you approved for disability income. It doesn't matter too much what he thinks is wrong with you... you just need him to demonstrate that you are too disabled to work.
That's all you need from him. I would avoid all arguments about diagnosis, and stick to the issues of disabling fatigue, pain, other issues that make it imposible for you to return to employment. All you need to do with this doctor is get him to rubber stamp your need for disability. So if he calls you MS, wouldn't that get you the disability income?
For TREATMENT and correct diagnosis you need a completely different neuro-- one that is Lyme Literate.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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