Brain Spect Scan

Pearlscale

Welcome
I also had a neg western blot last year and my brain spect was abnormal. My neuro had wanted to say MS. But I knew it wasn't. Because I had had lyme 19 yrs ago and was test positive then. But wasn't treated long enough.

If you haven't been tested thru Igenex you need to have them do the test as they are the most accurate. My test results last year with them were 5 lyme bands all indeterminate which my LLMD said means I had it. But not by CDC standards. Then Earlier this year my western blot did show positive lyme bands.

If you haven't been tested for the co'infections, you need to. I also had babesia, and several others were highly suspected.

I agree that you should do something asap. There are LLMD's in FLA. Ticker can give you names when you need them.

Hope you get some answers soon. As you mentions, most people herx and they feel worse than before they started treatment.

I started Sept 2005. I started on IV's. I am still pulsing orals. I can say today I feel that I am 50% better but I have had alot of improvement. I felt really good for the couple weeks before I had to go back on orals this week. But I do see the light at the end of the tunnel.

Keep us posted.
Prayers......Marsha

dorkdad

My wife Jeanne (wacko woman) was diagnosed with Lyme disease. We chose not to do abx, instead used Dr. Jernigan's treatment (Beating Lyme Disease) He uses biological medicine (tinctures, homeopathic, magnets, etc.) she never had a herx. Now, one and a half years later, she is up and running. (she has had Lyme for 29 years so this was a real battle) She still has some brain issues but she is promised they will heal with time.

So as Marsha said, do get a more accurate test. It is important to get started.

Jeanne had a SPECT scan by the Amen clinic. She had severe brain damage because of the ammonia (Lyme neurtoxin). She was told that her brain looked like a near drown victim. Her Spect scan looked similar to other patients with Lyme disease. So if you have a competent Dr. I do believe they can make a good judgment call.

Dorkdad

ticker

Hi dlm248, welcome to the board!

I am sorry about the loss of your father.

I am sorry you and your family have been sick for so long. Is the clinic you went to in NJ?

No Lyme test is completely reliable and results can vary by lab. Testing should be used as an aid in diagnosis not solely for diagnosis. Do you have a copy of your results? If you want to post them, we can help you interpret them.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

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.

There is an excellent Lyme doctor in Hermitage, PA. If you would like his name, let me know. If NJ is closer for you, there are a couple of doctors there who come highly recommended also. Are your other family members getting properly treated?

Yes, there is a reaction called Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

Once you betgin treatment, it is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.

What part of Florida will you be moving to? Lyme disease is the second fastest growing infectious disease after AIDS in the US and the number one vector-borne disease in the US. It is in every state, including Florida.

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 Lyme doctors follow his protocols.

Hang in there okay? Good help is available.

ticker

triple post!