I've gone downhill so quick..it has scared me beyond anything since I've been sick. I still don't have any arthritis symptoms...but the neuro and GI stuff has skyrocketed. The pressure and numbness in my head is beyond any prior, and mentally, I've gone way past the early "brain fog" stage, plus the limb numbness and heart palps/chest pressure are back.

I haven't been on any antibiotics for about a month now...so I'm sure that's not helping. LLMD took me off Biaxin, and it took a long time to find a way to get IV.

My cognitive skills have diminished so fast..that we had a SPECT scan done. It showed decreased activity..."showing much significant and severe deactivation in the prefontal cortex, temporal lobes and parietal lobes consistent with past injury, toxic exposure and/or infection". Antibiotics or meds for sleeping can't do cause this, can they?

If anyone has done a SPECT scan and can offer thoughts on their findings and how it helped with their treatment, I would really appreciate in hearing them. Most of my "dimishments" were on the left side of the brain...not sure why, or if that pattern is shared by others with lyme, but would be very interested in hearing from others.

Does anyone know if IV treatments are more effective for neuro lyme? Is the herxing going to be really severe? Right now, just feeling plain scared...school's starting soon and my family will be gone during the day...and I can barely remember to take my supplements as it is.

With these findings, the doctor who did the SPECT suggested generalized anxiety and classic depression symptoms existing with such findings and suggested an anticonvulsant (such as Lamictal)not sure what that is... and a stimulating antidepressant such as Wellbutrin. Lord....what more can be added to this??

Sorry this is rambling...feeling pretty shaken up right now and pretty scared. Going through different sleep meds too trying to find something effective...perhaps IV will make things better there too?

Thanks to all for listening and "being there" right now. Just needing some positive thoughts and encouragement and prayers to get through this stage. Never thought it could of gotten so bad, so fast...just want to know there's light somewhere in this tunnel.

JavaBeing

I'm praying for you!

So glad you are getting the right yesting, and sounds like you dr's are on top of things.

IV abx do help neuro sypmtoms. Although me spect scan was in the normal range, my neuro symptoms were complex, and my LLMD insisted I start with IV's. That was Nov, and still doing it.

I chose to have a port installed instead of a PICC line, but that was because I was told that this would be a long term venture.

I wish you well...email me if you wish
 

I had a SPECT back in May 05 a week after finally getting diagnosed w/Lyme after 2 years of hell. My SPECT scared me so bad I had to go to the hospital chapel.

Mine has multiple areas of moderate to marked decreased activity (all on left side of brain) temporal lobe, posterior parietal lobe, inferolateral frontal lobe, and operculum.

The summary suggests trauma (not exactly a word you want to see in a report on your brain), but based on my history, obviously there was no trauma to my brain and my decreased activity is consitant with vasculitis.

Supposably this is why I have the neuro (seizure) pain which actually is mainly on the left side of my body (arm and leg). Although I thought that the left side of the brain controlled the right side of the body...hmmm...don't know..any bio majors out there?

Hope this helps. I'm scared too. My LLMD has me on oral and IM injection abx. I really think I may need IV. I think about it every day as I am in so much neuro pain.

jloisu
 

This may not be as important for treatment from our LLMD's, who should believe us and treat by our symptom reports. But, they can be very helpful in justifing treatments to insurance companies and with social security in applying for disability.

Some people seem to do well on IV antibiotics, some have alot of herxing. Talk to your doctor about strategies of what you'll do if the herxing gets bad. Plan ahead in case your more out of it or need extra help. I think they are supposed to get across boold brain barrier better.

I felt like MYSELF for the first time in years after 1 or 2 weeks on IV rocephin. However, it was short lived. I had alot of nuero symptom herxing and very major candida overgrowth for the next couple months. That said, it probably killed quite a bit of bacteria in my brain. After a little rest and detox, I can now tolerate other oral ABX that also caused me similar symptoms in the past. So, slow progress is being made
 

It is always easier to start a drug than to stop. If the IV antibiotics start working they will be changing your brain chemistry as the level of infection goes down. The drugs you mentioned will not do anything for the real neuro or G.I. symptoms, but hopefully the Claforan will. Also, the Wellbutrin may actually make your sleep problem worse.

From what I have read your SPECT scan is fairly typical for Lyme patients. What this test showed is that the Lyme has affected the bloodflow to your brain and as a result you are getting less oxygen to your brain which means it is harder to think etc.

Hubby has had a PICC line in for over 2 years and generally they don't cause many problems as long as you use sterile procedures when changing the dressing and flush the line frequently.

Everyone responds differently to antibiotics so it is hard to say how bad the herx will be -- just pay attention to your body and if things get bad reduce the dose of antibiotics or even stop for a few days -- of course discuss this with your LLMD 1st.

By the way, one doctor told my husband he had "a young anxious brain" -- how's that for a diagnosis! Don't let anyone tell you you are anxious and depressed and that is why you feel bad -- you may or may not be anxious and depressed, but those are symptoms that came after the Lyme -- they did not cause the Lyme.

For the 1st 1 1/2 years the doctors couldn't diagnose my husband's Lyme and kept telling him he had major depression/anxiety.

He also had gastritis which affected his absorption of nutrients and that was the real cause of his depression/anxiety -- if you do not absorb protein correctly you do not get the amino acids you need to make the neurotransmitters which are what control your moods.

Good luck and keep us posted.

Bea Seibert

[This message has been edited by seibertneurolyme (edited 28 August 2005).]
 

We gotta trust someone - hold on.

Cigi
 

Complications? Did the Rocephin make you worse or could you just not tolerate it?

jloisu
 

Hyperbaric oxygen is said to improve SPECT scans like you describe.