I am confused about something. I read about people having IV therapy rather than oral if they are havng neurological symptoms of lyme. I am not quite sure what is meant by this. Are these symptoms that can be measured by standard tests such as MS, ALS like symptoms, etc??? I would definitely say I have neurological and cognitive symptoms, such as "seizure like movements" (which were disregarded as "pseudoseizures), eye twitches, sometime mouth, SEVERE brain fog to the point where I feel like I have early alzheimers (but nothing shows up on tests), short term memory and even very bad long term memory problems ( I feel like my brain is totally toxic) and prior MRI contrast test showed areas of white matter intensities (dr said they were not related to anything) and spec scan showed some cerebral hyperfusion in some areas of my brain, not to mention I have horrible mood swings, sometimes lyme "rages" (I was diagnosed with a personality disorder after I first got sick, i have heard this could happen to people w/ lyme.)
I am confused if "neurolyme" means ALS or MS symptoms measurable by brain scans or if it could consist of some of "less severe" type symptoms like mine (although they have been quite debilitating for me!). My prior neurologists totally disregarded my symptoms and told me nothing was wrong! I am afraid if I went back to a neuro, now w/ a lyme diagnosis, they would laugh at me!! ;-(
forgot to mention there were also many times I could not walk due to extreme weakness in my legs (EMG didn'tr show anything). My dr just said this was due to my fibromyalgia. Also times when I could not speak and was slurring my words- happened from severe fatigue.
Neurological lyme is caused by the lyme spirochetes (bacterias) living in your brain. Your symptoms such as personality disorder, rage, are perfect examples of having those spirochetes in your brain.
I used to have rage episodes also along with mood swings, but as I have become better, that has now disappeared, thank goodness! I don't suggest seeing a neurologist, I do suggest seeing a LLMD. Lyme Spirochetes often cause "ammonia" which enters the brain also causing brain fog, mood swings, etc.
About 1 year after I was infected with Lyme (I was not diagnosed then, I was only told I had CFS), I could not walk at all, I had to crawl on my hands and knees just to get to the bathroom. Then I found a somewhat LLMD who put me on Doxyclycline for 8 months and I was able to walk again.
We have a member on this site who is in a wheelchair because of Lyme, that's how bad it can get.
I really urge you to see a LLMD so you can get on the right track to recovery. This is a very sneaky disease.
Have you been tested for coinfections? Most people who have Lyme also have one or more of the coinfections that I posted before.
I tested positive for Mycoplasma pneumonia (very elevated IGG) and negative for babesia (which I thought everyone tests positive for w/ lyme). I was not tested for the other ones, such as Bartonella, Erhlichia (sp?) and the other one I forgot. My babesia test was done at quest labs, so the dr said it might be so accurate.
I was always an anxious person, even before my dx, but it has gotten much worse, but trying to convince psychiatrists that these symptoms have worsened or are due to lyme, they won't hear it!!! They say, once personality disorder, always personality disorder!!!! ;-( I am so sick of drs quite frankly!!! ;-(
how did you know when you first got lyme? are there certain medical tests that are done to confirm neuro lyme or do the drs just go by symptoms?? I am not sure when I got lyme. It is possible I got it the same time I got mono, which was 14 years ago, so I am surprised I am not even more disabled than I am (well meaning ALS or something).
In my daughter's case, her doctor is treating her for neurological Lyme based on her symptoms (primarily visual and auditory disturbances). I would certainly describe your symptoms as neurological, and it sounds like you have a lot of documentation of neurological impairment. My daughter saw a LLMD neuro-ophthalmologist who asked us to schedule a SPECT scan at Brian Fallon's lab in NYC, which I am now trying to do.
Here is a site with a lot of good information about neuro-cognitive aspects of Lyme:
The personality disorders have me wondering. My brain MRI didn't show anything and I had the contrast done also.
I have symptoms that I can mirror from Oct. 2004 back to Dec. 1999 as far as flu-symtoms and crying over the news. I went to to dr. in October 2004 especially since I didn't go in 1999 realizing the symptoms were the same. I wanted to know what it was.
I'm surprised psychiatrists aren't more aware of the relationship between lyme and personality disorders. Maybe they just worry about treating the symptoms and not what causes them.
tested positive for Mycoplasma pneumonia (very elevated IGG) and negative for babesia (which I thought everyone tests positive for w/ lyme). I was not tested for the other ones, such as Bartonella, Erhlichia (sp?) and the other one I forgot.
It is really important to be tested and treated for co-infections. Everyone with Lyme does NOT test positive for babesiosis. That is absolutely not true. In fact, you can have babesiosis and get a false negative because there are many strains of babesia and the available tests are geared toward only B. microti.
The symptoms you have listed are very much in keeping with what is referred to as neuroborreliosis, or neurological Lyme. I have heard from a lot of people with Lyme who have described those exact symptoms. From what I have read, a SPECT scan is sometimes more revealing as it indicates bloodflow patterns, with hypoperfusion sometimes being evident in Lyme patients. Columbia University has done a good deal of research on this subject.
Yes, if you went back to a non Lyme-literate neuro unfortuantely you probably would be laughed at due to their ignorance. Like countless others who are having to deal with this, your best bet is to be evaluated by a LLMD.
I'm sorry to hear that you're going through not only the the physical symptoms but the stress of a disease that's a bumpy road in a storm trying to get treated...
I was first diagnosed with Alzheimer's after losing my job due to memory lapses, depression, trouble with balance (holding, reaching for things, walking, crying, etc.)
To make a long long story short, I didn't accept that diagnosis, mainly because I had severe pain in my lower back, neck, shoulders, burning in my hands and feet and knee pain that made it literally impossible to walk.
My spinal tap showed Lyme bodies present - Elisa test was negative but Western blot was highly positive. My MRI showed "white spots" presumed to be MS or small stroke evidence. My SPECT scan showed hypoperfusion of all lobes except one. For years, I was given minor short term antibiotics, including a month of i.v. Rocephin.
As soon as the medications were stopped, I would relapse (I had Herx's during medication use) but was told that basically I had been treated so I was cured.....
Finally, I was told of an LLMD who immediately put me on higher doses of antibiotics for longer times and frequent checkups as to my cognitive problems. Medications were changed according to my symptoms and I was once again able to read, write, speak without slurring, etc.
After many years of treatment, I am still on (at the present) i.v. Bicillin every week and after finding a neurologist (yes, there are some) who was studying with Dr. Burrascano, and doing another SPECT scan (this one showing hypo-perfusion in ALL lobes) he put me on Cholestyramine which was to help clear out the dead spiroketes from my system. I found that this helped me well enough to occasionally be able to drive short distances for limited errands.
He also sent me to a psychologist so that I could be tested and rehabilitated and hopefully learn how to use the parts of my brain that weren't so badly damaged. I'm in the midst of a 3 month program now and find it very hard as he's concentrating on working with the area of processing
sorry, I was going to make this short...LOL imagine the LONG version!
Anyway, I was only able to get a mark of 14 when this area was tested so we're concentrating on it. He will help me to re-learn processing and hopefully I'll be able to write a few checks each month without incredibly messing up my checkbook by overpaying, underpaying, not paying, sighhh among other "normal things".
So, please find an LLMD (Ticker can help you) and don't give up. We have to be our own doctors now and keep track of our symptoms and insist on the appropriate trial of antibiotic, but an LLMD will help you greatly.
After many years, I'm "better" than I was, but still working hard at being cured. This group has been a tremendous support and all have much infor-mation to share. Don't hesitate to ask and share your stressors & symptoms.
Last edited by outinthe_woods; 08-27-2005 at 04:37 PM.
I knew when I became very ill after I went mushroom picking in very dense woods on Long Island. I was always an energetic person and after that day in the deep woods I felt fatigued and feverish. I also had a strange rash on my ankle (not a bull's eye).
Anyway, I saw over 50 doctors on Long Island who all tested my blood and kept telling me I did NOT have Lyme. I had CFS which I told you that I didn't believe in that after doing research. So after 5 years of researching every possible scientific-based disease, I found a website that talked about Ehrlichiosis. I fit all the symptoms of that so I went to Stony Brook University Hospital and asked to be tested for Lyme and Ehrlichiosis. The doctor refused to test me for Ehrlichiosis. His exact words were "If you had that, you would be dead."
Long story short: I found another doctor who sent my blood to IgeneX Labs and sure enough, I tested positive for Lyme and Ehrlichiosis, negative for Babesiosis.
I can't tell you how bad my mood swings were before I was treated, I knew this disease affected my mind.
If you go back and search all the threads on this site, you will read many posts from members that have neurological problems due to Lyme. It makes perfect sense for the reason I posted before, the Lyme Spirochetes spread to all parts of our bodies.
As far as psychiatrists, I have been seeing a doctor for over 20 years as I also suffer from Panic Disorder (since I was a little girl) and found out I inherited that disorder from my Mom, my Grandmother, and it goes way back in our family. My doctor is very aware of the difference of my behavior caused from "Lyme" and "Normal Everyday Stress". He has been taking notes from me as he is very interested in Lyme and how it affects the mind. He does not think I am crazy, he is happy that I am getting better and he supports me in every way.
Sadly, most doctors are not as open-minded as my doctor, and they are so quick to tell a person that they have mental problems when those problems are truly caused by Lyme.
Tinuviel mentioned the Spect Scan which I don't know much about so it's worth researching and since you live close to Manhattan, why not call up Columbia University?
As far as Mono, yes I had it when I was about 12 or 13 years old, and I was fine until I got Lyme. I am 48 years old now, so I see no connection between the Mono and the Lyme.
I strongly suggest that you buy some books on Lyme Disease such as "Everything You Need To Know about Lyme" by Karen Vanderhoof-Forschner. They sell that book on Amazon.
I also have the book by Dr. David Jernigan called "Beating Lyme: Using Alternative Medicine and God-Designed Living." The book is not religious and at the moment I am following Dr. Jernigan's methods which are helping me tremendously.
Before you do anything else, please try to see a LLMD. I would also ask your doctor to send your blood to IgeneX Labs again to see if you are coinfected as most people are.
I think I couldn't be as concise previously (that old "brain full of dead & alive spirochetes - my own bin Ladens going in and out of caves between treatments...LOL) but I'm glad I was able to make it clear enough for you to get through! See, there IS a time of improvement