SPECT Scan Results - Good News or Not?

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scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/1/2009 4:50 AM (GMT -6)   
Yesterday, I found out the SPECT scan I had last week showed significant improvement since the one I had back in 2005 when I first went out on disability.  I know I should be thrilled but the problem is that I feel so much worse since 2005 and I'm having a very hard time understanding how this can be.   I just finished three months of IV Rocephin and realize that it will take much longer than three months considering how long I've been sick but again I just can't understand why I'm not feeling any cognitive improvement when the scan indicates significant improvement.  Could this possibly be because there's permanent damage? 
 
I experience constant dizziness and lightheadedness and the brain fog is the worst it's ever been.  I have difficulty speaking and sometimes even a simple conversation is a real struggle for me.  When I push myself to try or am forced to, I become extremely stressed and frustrated by my inability which just increases the depression.  I can be in the middle of a sentence, or listening to someone speak, and my brain just shuts down completely and I'm unable to respond.  Of course, friends and family have absolutely no understanding because I only pick up the phone or see them when I'm feeling capable. 
 
I manage to muddle through posts and e-mails because I can take as long as I need to finish a thought or a sentence but very often I can't even do that.
 
I feel like a lonely, frustrated zombie. 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/1/2009 12:08 PM (GMT -6)   
scorpio your never alone long as we have this forum and email. maybe it will just take a lil time for your body to rebiuld what lyme as damaged. its great news that your MRI showed inprovement tho.

your in my prayers :)
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 7/1/2009 1:53 PM (GMT -6)   
Hi Scorpio,

Celebrate EVERY piece of good news! I am so happy you have had some improvement. We can win the battle if we stay in the fight long enough! I hope you continue to have more good news and that it will serve to encourage you to hang in there. You are among friends here and we all understand the nightmare we all face each day. This is a long and complicated journey but it is possible to become well again. Be good to yourself and try to allow each small victory to bring you some happiness.

Wishing you all the best, bablymers mom

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/1/2009 2:27 PM (GMT -6)   
I think it is common for test results and symptoms not to correlate with each other with Lyme. Many of us have gone to the doctor with our symptoms and all the tests show nothing wrong, but we clearly have symptoms.

Don't give up - I've read that the cognitive symptoms can take a long time to go away.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/1/2009 2:34 PM (GMT -6)   
RD, Thank you so much. I apologize for being out of touch lately and hope your appt. today goes well. You're in my prayers also.

Bablymers, Thak you so much. I know I should be celebrating but I'm afraid I don't feel the improvement because of permanent damage. RD makes the same point my doctor does about my body needing more time to repair itself.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/1/2009 2:54 PM (GMT -6)   
Scorpio,

I'm am SO extremely sorry that it has taken me so long to reply. You have been so good at replying to my posts.

I am so sorry you are feeling so bad. I wish there was something I could do to help. I have no answers as to why you are still feeling bad but do know that it sometimes takes our bodies longer to heal, especially if we've been sick for so long.

I just want to let you know that you can email me anytime you need to talk even if it's just to vent. I hope you feel better soon.

Big Huge Hugs to you!!
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/1/2009 3:07 PM (GMT -6)   
Razzle, Thanks for reminding me what my doctor has told me. Even though I know it, it helps to hear it again sometimes.

CG, Thank you so much. I hope you know how much it means to me. Please don't ever apologize for not responding quickly enough. I understand what you're going through and still you always manage to respond. I'm the one who is frequently MIA. lol

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/1/2009 4:07 PM (GMT -6)   
Scorpio,

I go MIA too, but then I respond to every post when I get back on and it makes it "look like" I've been here the entire time, haha!
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 7/8/2009 1:34 PM (GMT -6)   
Scorpio

Sorry you are not feeling better at this point after your treatment of IV's. I Too after the first treatment felt like this is not working, even after my fourth treatment of IV's is when my brain fog lifted greatly, still have dizziness and lightheaded, and difficulty speaking in complete sentences along with other symptoms, but nothing like it used to be. I can function and take care of my family and still have days where if I do to much I am down for a few days. Still unable to work at this point. The Rocephin will work just give it more time and more treatments...I let my body rest from IV's inbetween treatments for a good 1 to 3 months and then started back on IV's. For me orals tear up my stomach and IV's really have helped, even after dealing with this disease for over 7 yrs. If you have a doctor that will give you the IV treatment keep chugging away with it.
Hope you get to feeling better soon.
 


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 7/8/2009 1:51 PM (GMT -6)   
Thanks Harleyrider, I'm glad it has helped you. How long was each treatment of iv's before you took a break?

Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 7/8/2009 5:11 PM (GMT -6)   
Scorpio

The first treatment I was on for 28 days, the next 3 treatments I was on for 3 months, and I plan on doing another treatment but not sure when I will be ready for that. Taking a break from IV's and on an Oral of Cefpodoxime 200mg twice a day and an Anti-Inflamatory called Diclopenac 75mg twice a day which helps with the pain and swelling. I also take a multivitamin and a dissolvable B-12 2500mcg once a day for Energy, Metabolism and Nervous System. I have started these meds day after IV was pulled ( 7 months ago ). I also take Thyroid meds which I was taking at least 10 years before I was dx with Lyme. I take Probiotics when needed. Im doing ok for now, think Im over the big hurdle, at least easier now to deal with everyday life. Still have a long way to go.
Oh btw my doctor filed with insurance as persistent Lyme. I'm thinking this is one way for them to understand its not over and is still open for treatment.

I will be glad to answer any questions you have.
 

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