So..I met with my neurologist today to review my EEG and Brain Spect. These were ordered before I knew I had Lyme after my Brain MRI showed "a suggestion of bilateral cortical atrophy of the parietal lobes." (otherwise it was normal.) I'm 35 BTW.
My EEG was normal. But my Brain Spect showed "a diffuse bilateral process involving supra and infratertorial areas." the Impression was "diffusely abnormal spect study with multiple areas of involvement without a typical pattern of alzheimers or dementia." So..I don't have alzheimers (good), but clearly my Lyme is in my head.
I told the Doc I was just diagnosed with Lyme via IgM on the Igenex western blot. He wants to do a spinal tap to ensure it isn't in my CNS.
I told him it already was as my symptoms were mainly eye, ear, etc, although they are mild / moderate and not severe. He doubted this as I seem relatively "with it" (I am.)
I told him about the LLMD I'm working with who will start my treatment on MOnday. I don't know if it will be IV or Oral Antibiotics. He said if it was in my CNS he would do IV, but only if he can confirm with a spinal tap.
What do you think? I don't want a spinal tap. It is too invasive and the recovery is too long.
ALso...I know no one is a doctor here, but in your EXPERIENCE, should I push my LLMD for IV or Oral antibiotics?
I had bands 31 and 34 present, meaning I have had Lyme for more than a year. Burrascano would classify that as "Late Disseminated" and therefore 14 or more weeks of IV therapy."
At the same time, I've only had about 6 months of symptoms (4 constant) and most of my symptoms are mild / moderate, although all are neurological. (Eyes, ears, GI, sweating) I have no joint pain and only mild, occasional muscle pain. (maybe 1-2 days per week in my leg.) This could be considered "early disseminated" as "symptoms are present for less than one year". Thereofre, oral abx seems okay.
I'm so confused. I want AGRESSIVE treatment to kick it out. But don't want to be overkill. Also, my LLMD is not affiliated with a hospital, so I'm not sure how I will get the IV in. Hmmm.
Thanks.
Posted by TF (Member # 14183) on :
"EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment: 1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical)"
This is you. You go by how long you have had symptoms. You can't know how long you have had lyme. You just know how long you have had symptoms.
I had symptoms at least 10 years, and I got well with oral antibiotics only. All of my friends had orals only, and 2 of them were women with a fibromyalgia (which is lyme) diagnosis for at least 20 years. They are all well also.
Only severely ill patients (having seizures, in a wheelchair, etc.) or those who have had steroids or their immune system is shot need the IV generally.
I was very happy that all I had to take was orals. You avoid the dangers of IV. (An infection in the line is life-threatening. I read it can kill you in 48 hours. So, you always have to be on the look-out for that and get to the ER and have your line pulled if it ever happens.)
The neurologists all want to do a spinal tap. I went along with it. That was before I got to a lyme doctor and before I read Burrascano. I would never go along with it knowing what I know now. It will not change how your lyme doctor treats you one bit. So, why have it?
Why are you going to the neurologist anyway? Lyme is primarily a disease of the nervous system, per Burrascano. And, we know it is in your central nervous system (your brain). So, what is the point?
My brain scan showed 2 UBOs (unidentified bright objects). All that proved was what I already knew--something was wrong with my brain. Still, the neurologist yelled at me, "You do not have lyme in your brain! Do you hear me! You do not have lyme in your brain!"
Meanwhile, the brain scan report said "Lyme disease cannot be ruled out." That's how I learned that neurologists are determined for us not to have lyme disease--even with my LabCorp positive lyme test and my UBOs.
The doc is the key to getting rid of this disease. I can't emphasize that enough. The doc is the key. Get to the best Burrascano type doc you can find and be very obedient to all you are told to do.
It has been 5 years now since I completed my lyme treatment and I am still symptom-free, enjoying my life. It is the same life I had before lyme disease. (And, lyme stole 5 years of my life from me.)
You should do well. You are catching this early.
Posted by dmc (Member # 5102) on :
don't do a spinal tap. It is a very poor test for Lyme. Neurological symptoms mean it is in the CNS. Your neuro may want to (or may use) a negative test to say you don't have nor ever had lyme.
Do a search here...Search button is above under the "post a pololo" icon.
Stick with your LLMD.
Posted by IckyTicky (Member # 21466) on :
I wouldn't do the spinal tap. If that comes back normal insurance could refuse to pay for anything lyme related at all. Pointless procedure for LD. Also I know someone who got a LOT worse because of the spinal tap (she didn't know she had LD yet when she had it done). It was awful for her. Personally, I just wouldn't have it done.
Posted by Keebler (Member # 12673) on :
- Do NOT do the spinal tap. No need to return to the neurologist. Your LLMD may have the name of a LL neurologist if you need one in the future.
Please tell your LLMD the name of this neurologist since you " . . .told the [neurologist] about the LLMD I'm working with . . . "
Your LLMD should at least know in case there are ramifications.
There is no need to go back to a neurologist who is so obviosly (sp?) ignorant about lyme.
Yes, lyme is likely in your CNS but that's just the way it works. Most doctors think lyme is "just" in the joints and get all wigged out as they think it's rare to invade the CNS when, most of the time, it is an infection of the nervous system.
But a spinal tap is NOT going to show that, in all likelihood. It is NEVER recommended by ILADS-educated LLMDs.
A spinal tap is way to gouge you for money, gouge you for bringing up lyme in the first place, cause you pain and possible down-time of up to a couple weeks afterward --- and DENY you treatment when it does not find lyme (although it's not a good test).
Unfortunately, the IDSA wants a positive spinal tap, a current bulls eye AND all sorts of symptoms that are very recent.
The also require a postive ELISA (another horrible test that is not adequate) and far too many positive bands on THEIR Western Blots done without testing all the bands.
Cows will jump over the moon before most lyme patients could get a positive IDSA diagnosis. And, without it, treatment is usually denied by the usual channels.
Stick with ILADS-educated LLMD. And, it's really best to not share that name with any mainstream doctors and LLMDs are frequently harassed and pressured. And that limits your chances at having a good LL doctor.
. . . Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells.
The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%). An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum.
The proposed index of 1.3 would be expected to have even worse sensitivity. . . .
-
Posted by Keebler (Member # 12673) on :
- Q: " . . .should I push my LLMD for IV or Oral antibiotics? . . ."
Neither. Let the LLMD assess you. Listen to his/her suggestions. Many get better with orals. IV is no walk in the park and orals usually follow anyway. Some people can't handle starting on IV.
Aggressive treatment is not as important as adequate treatment. They are not necessarily the same thing. Don't push for one thing or the other. See what the expert has to say. -
Posted by bcb1200 (Member # 25745) on :
Thanks everyone:
I guess I am "early disseminated" as I have had symptoms since November, and continuously since Feb.
I followed up with this neuorologist since I went to him in March before I knew I had lyme. He did my brain MRI, Brain spect, and EEG.
What a surprise that the spect was abnormal (kidding.) I HAVE LYME!
Thanks everyone...I am still learning. I meet with my LLMD (not a true LLMD, but pretty good) on MOnday and will start treatment. It can't come soon enough. I have noticed I am getting some discomfort in my calfs and thighs.
I wonder what abx I will get on first. I imagine Doxy.
Posted by jasek (Member # 12395) on :
O.K. my neuro lyme brain doesn't know or doesn't remember CNS means...???
I was diagnosed in 1999, with symptoms going back to 1975. I was put on I.V. abx immediatly, and a nurse came to my house once a week to check things out. I had a 24 hr. # to call if there was a problem and I did everything else myself.
Ev. 12 hrs. for six weeks. No problems, no infections, I.V. bags delivered right to my door. I guess I got lucky with that. I agree do not do a spinal tap.
Posted by carly (Member # 14810) on :
CNS = Central Nervous System.
Posted by jasek (Member # 12395) on :
You guys are so smart ;)
Posted by bcb1200 (Member # 25745) on :
Thanks everyone.
I'm still so confused. I know many, like Keebler, have given me such good advice. But I"m a newbie still and only a few days post diagnosis.
My doc is okay, but I'm wondering if I should go to some of the big ILADS docs in NYC or CT to ensure proper treatment. I want to kick this for good in the last amount of time possible (but will be treated as long as necessary, obviously.)
I'm just worried that since my spect was abnormal it means I'm far along, even though I'm pretty "with it."
Posted by Keebler (Member # 12673) on :
- Anyone who has lyme is in a place that require serious attention. That being "with-it" can change on a dime if there are spirochetes unchecked.
If your doc is "just okay" and "not truly LL" as you said, prepare for an absolutely miserable life.
If you want to really address this, find an excellent and experienced expert who is truly lyme literate and ILADS-educated (even it their approach varies, they must have the science and knowledge from all the ILADS research - and beyond).
You want a doctor who has helped hundreds (or thousands) get better. And remember, lyme rarely travels alone. LL MDs are versed in all tick-borne infections.
Most "just okay" or "not truly LL" doctors are not. Not at all.
And, even with the very best doctor, not every one makes it. Lyme can be fatal. Indeed, lyme is a very serious and complex infection. Yes, many do just fine with excellent self-care and good medical guidance - and time. But you have to know that, even under the best circumstances, there is no guarantee.
So, I'd sure want someone who is "truly" LL.
If your car were having electronic problems with the accelerator or the brakes, would you take it to a mechanic who was "just okay" and not at all versed in the make and model of your car? -
Posted by Keebler (Member # 12673) on :
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D. -
Posted by bcb1200 (Member # 25745) on :
Thanks Keebler and others.
I'm confused about the docs. Mine is okay for massachusetts. She is smart, and while is newer to Lyme, has done a good job from what I hear from other Mass Lymies.
I have a appt with Dr. R in NYC in a few weeks, but it is far an expensive. But I think he is the #1 guy (or top 5), so that is good. I have tried to get Dr. P in CT (#2 guy?) but they won't call me back.
My plan is to start with my Doc and then transfer to Dr. R or P. I also got a few names from people here on other docs in CT which seem good, but not as experienced as Dr. R or P.
So I don't know what to do.
I think I've only had it a year or so and symptoms only for 4-6 months. So compared to others here, I'm "recent", but I don't want to become "long term."
Posted by Keebler (Member # 12673) on :
- If she has "done a good job" according to other lyme patients, I would not refer to her as "just okay" or "not truly LL" (in previous posts). If she has done a good job for others, that speaks well of her skill level.
There is no #1 or #2. A very good LLMD is a very good LLMD. Some have written more and may perceived to one of the be top guns. However there are many very good LLMDs. - with many different styles, too.
Some are out there in front with books, lectures or website; others prefer to work quietly.
It's just important to have a very knowledgeable LLMD, one who's done the homework. But there are no ratings numbers that one need match. Just make sure they measure up to the task. Yours sounds quite able and smart. You will know more as you proceed.
Much is also up to how well we take care of ourselves. So, even if some patients don't seem to do well with a doctor, the patient's self-care must also be considered, as well as the full degree and mix of infections as well as damage done prior to obtaining care.
Good luck. It does sound like you will be in good hands. Be sure to ask about books or articles she recommends for patient education, too. -
[ 05-08-2010, 05:38 PM: Message edited by: Keebler ]
Posted by AJM (Member # 11266) on :
To address some of the points you made:
Personally, I would not recommend an LP. It is an invasive procedure with risks and is not a reliable test for Lyme, as others have pointed out. I just had an LP on Tuesday (neurol symptoms for almost 8 years; lesions on brain suggestive of MS, but neuro wants to rule out "mimics", including Lyme) and had headaches and neck pain for almost five days. It finally seems better this afternoon.
As for abx, I would recommend going the oral route first. It very well may work for you as it has for others. IV abx require diligent care and have the risk of complications. My son's PICC line was crimped by the visiting nurse. He also ended up with a PICC line infection and was hospitalized; we we fortunate that his temp spiked so quickly and sought emergency care before he had a serious septic infection.
If in fact you do go the route of IV abx, it doesn't matter if your doctor is affiliated with a hospital or not. The scrip for the IV abx usually gets sent to a mdical home care company. Your first dose may be administered at a hospital or clinic, but after that, the home care company delivers your meds once aweek and a nurse will come and help maintain your PICC line.