Is this Lyme's Disease, MS, Post Viral Syndrome or?
Help. In May 2006, I became acutley ill. Symptoms were recurring atypical headaches which caused extreme pressure in the back of my head and radiated to my forehead, balance problems, enlarged and sometimes painful lymph nodes in my neck, blurred vision, brain fog and parasthesia of my lips and left arm. I went to the neurologist who performed evoke potentials, MRI of brain and C spin. Tests came back negative except for the evoke potential in my right eye. On my first visit, I had hyper reflexes of my lower extremities. On my second visit, the doctor said my reflexes were now normal. The neuro told me he thought I had depression and wanted to give me Zoloft. I refused telling him I'm not depressed, I'm sick. The neurologist said that brain fog is a late symptom of MS and that I don't have it because he saw no lesions. He said at first he thought I had post viral syndrome, but later retracted that and said that PVS does not cause parasthesia or poly-mono neuritis which is what the Infectious disease doc called it. My primary care doc tested for Lyme Disease, and mutiple viruses. The Lyme came back negative. Tested positive for Epstein Barr- old infection. My primary sent me to an Infectious Dz. specialist who performed a Western Blot for Lyme and also said that the left side of my body is stronger than my right. The ID doc said maybe I had consumed a neuro toxin via fish ingestion. The ID doc wondered why the neurologist had not performed a spinal tap. Help. I feel like pure crap. The symptoms disappear partially only to return with a vengence. The headaches are the most dibilitating aspect. When the pressure increases in my head it makes it hard to concentrate and my memory is altered- words are hard to grasp.
I also have gastric reflux and some pain on my R lower abdomen. I feel terrible and will have to return to work because the doctors can't diagnose me.
Last edited by gg913; 08-07-2006 at 10:33 PM.
Reason: change title
gg......My only thought is this in that you mentioned as this happened your lymph nodes swelled and my question is everytime this happens do they swell.If so then there's a good chance there is an underling infection as this is where Lymphocytes (immune cell) reside and as an infection occurs they rapidly reproduce hence the nodes swell.......
To surpass the 120 yr Life Span !!!!
You stated that the VEP was abnormal,this would show past optical neuritis,imflamation of the optical nerve,can be associated with MS.
Get copies of all your medical records,including MRI reports.Some specialist don't like to diagnose a disorder unless its a clean cut picture.Get a second opinion from a new neuro.
Did they do MRI of the thoracic or lumbar ?Lesions in these areas can have lesions and can cause some of your symptoms.
You have had an extensive work up,but sounds like they are missing something.
I'd really push for a lumbar puncture, did they do a somatosensory evoked potental?
Many neuro's like to use the depression card,when they don't know what causes a persons symptoms.
Have you thought about going to a bigger clinic,the cleveland clinic has an awesome MS and immunology clinic thats awesome.Its about 3 hours from waterford.The doctors there treat you with respect and there technology is state of the art.
thank you so much for your reply. I am seriously at my wits end. I have not felt well for 4 months. The neuro doc is treating me like I am a mental case. My primary care doc who has been my doc for years knows that I am not - so I guess that's a good thing. I am awaiting test results from the infectious disease specialist. Maybe it's Lyme dz. who knows.
Re: Is this Lyme's Disease, MS, Post Viral Syndrome or?
Hi gg913. I am sorry you have been so sick.
Lyme diseae is a multi-system bacterial infection caused from the bite of an infected tick. Ticks are very prevalent this time of year. Many people are bitten without knowing it because ticks are tiny and they inject a numbing agent so you cannot feel them on you. Lyme is the second fastest growing infectious disease in the US after AIDS and the number one vector-borne disease in the US, yet nothing is being done to educate the public and medical community about its seriousness and prevalence. It is in every state.
No Lyme test is completely reliable, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first. Many people who have Lyme test negative.
Do you have a copy of the Western Blot? I highly recommend you get copies of all your results. On the Western Blot for example, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot. Testing should be used as an aid in diagnosis not solely for diagnosis. A lyme knowledgeable doctor will not rely solely on test results to diagnose tick-borne illnesses.
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
I know of one Lyme doctor in MI. He is loctated in Saginaw. Would you like the name?
It is also important to learn as much as possible. I recommend reading "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Burrascano's treatment guidelines. He is one of the top Lyme doctors in the country, and many doctors follow his protocols.
Thank you for your response. I have done some reading and learned that lyme dz. may not be diagnosable until after treatment has begun. I informed my doc of this and she said she had never heard of that. Yes, please give me the name of the Saginaw doctor. I appreciate your very extensive info.
Hi gg913. The doctor in Saginaw is Dr. Michael Ledtke. If he is booked up, I suggest asking to be notified of any cancellations. Sometimes this helps to get an earlier appointment. Also, you may ask them if they could recommend someone.
The Lyme disease board at this site is very helpful also.