posted
I just got a call from my LLMD's PA. My SPECT shows mild to moderade perfusion in my brain tissue. This means that there is not enough oxygen getting to my brain and confirms neurolyme.
She said it is not severe and they usually see this reversed or get better with treatment.
She also said they usually recommend IV treatment with a positive scan such as mine.
I know several people who had severe lyme and said the IV was the only thing that helped (and quickly too!) One close friend had a PICC line for 5 months and has not had any relapses since (that was 7 years ago) and she is totally fine now.
Several people on this board say the PICC line didn't do much for them and I know everyone is different.
I want to try it but I am SO scared!
I'm also so sick of feeling this way that I will do whatever it takes! If anyone has any input, please let me know. Thanks!
Posts: 71 | From New York, NY | Registered: Aug 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hi Lar,
Sorry about your SPECT. Unfortunately a common finding!
As far as IV goes, you will never know until you try. Everyone is different. How long have you been treating? Have you done any orals?
If you are comfortable with doing a PICC it may be your way to improving health. If you are not comfortable with a picc, IM can be just as effective.
For me, IV or IM didn't seem to do much, but now I'm on oral doxy and experiencing some improvement.
We are all so different in our responses.
Good luck to you in whatever path you choose.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear about that news. Perhaps IV is worth a try. I had a brain SPECT scan done Wednesday. I'm ANXIOUSLY awaiting the results. Hopefully, it's not something I don't want to hear.
It seems like IV has helped several on here greatly. As Feelfit said, everyone responds differently.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sorry for the news but, hey, if you get treatment, this can get better.
Perfusion can really clobber anyone - especially with that after exercise payback - so just think of how much better you will feel and how much more steady your endurance will be.
This may be a long road, but at least you have a better road map now.
I cannot comment on the PICC line as that's never been an option for me. I think it's great that you have a good LLMD. You might find some practical help through your local support group, too.
You may already have this book but, if not, it's a gold mine of information and explanation.
Good luck.
-------
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Keebler,
That swelling causes exercise issues? Interesting. Can you elaborate?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Thanks everyone for your replies. I really needed some encouraging words. I got that call Friday afternoon and then went straight to a wake and funeral (a close friend's mom) and it has been a rough weekend to say the least.
I'm going into the LLMD this week to discuss my options. I also want to ask if I can treat coinfections while going IV.
I have not received my coinfections bloodwork back yet but clinically, I think I have bart and babs.
I have treated for 2 months on doxy (not with an LLMD) and 6 weeks on zith/omnicef with an LLMD. I haven't seen much improvement so I am definitely willing to try the PICC. I will also ask about IM.
I'm just squeamish and have a big fear of getting an infection or something going wrong with the PICC--it is freaking me out!
Friends this weekend kept telling me "it's not a big deal." But it is and I'm glad others understand.
Posts: 71 | From New York, NY | Registered: Aug 2008
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I had an abnormal spect "moderate hypoperfusion." I was on IV rocephin for 6 1/2 months. It did help...a lot, but I didn't get well. I also have viral infections (chronic) and viral infections can also cause abnormal spect scans. (see below)
"In about 70% of chronic Lyme disease patients with cogntive symptoms, brain SPECT scans typically reveal a pattern of global hypoperfusion in a heterogeneous distribution through the white matter.[6] This pattern is not specific for Lyme disease; it can also be seen in other CNS syndromes such as HIV encephalopathy, viral encephalopathy, chronic cocaine use, and vasculitides. However, this pattern is different from what one would see with normal controls, patients with primary depression, patients with Alzheimer's disease, and patients with focal brain damage as in stroke. "
Before going on IV, I would test also for HHV-6 and EBV...chlamydia pneumonia as well. You may need an antiviral in addition to an antibiotic.
IVs are expensive and have risk associated with them. If you know you are dealing with a bacterial infection, I would try oral antibiotics first, for 6 months. If you also have a viral infection, then add in valcyte (if it's HHV-6) or another antiviral if you just have EBV.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
ByronSBell 2007
Unregistered
posted
When you hav brain stuff going on, it is almost essential to get on IV's. Orals just don't penetrate as well.
IP: Logged |
lymeparfait
Unregistered
posted
I have mild Hypoprofusion too.
My llmd recommends that all co-infectins be gone
first, before beginning specific treatment for the
neuro-lyme. I just got rid of co's, and have
started Cefitin with cyst buster, Tinidizole. I
also take Plaquinil for Lupus which also busts cysts.
LLMD says she sees comlete healing of
Hypoprofusion with taking fishoils...good quality
at night for brain healing while the lyme is
being killed and moved from brain.
We'll see. I do feel much better after co-s are gone.
She only uses IV's on those with severe
hypoprofusion...not mild/medium. She believes Ceftin
works orally for medium cases. It can be different for everyone.
You have to feel comfortable!
I have decided to stop my anitbiotics after just 2
posted
Thanks again everyone! I'm so glad to have this board and hopefully I'll be able to help provide answers to others soon rather than venting/questioning all the time!
Just another update/vent: I just spoke to my LLMD (it was his assistant who called me Friday and mentioned the IV).
He says he wants me to stay on orals for another 6 weeks and THEN try the IV if I don't see improvement.
He also wants me to keep taking the mepron (even though the PA told me to stop it because of the drunk feeling, which the LLMD said was an "atypical" reaction).
I understand he may be saying this because he needs to treat cos first....
I had just been mentally preparing myself all weekend for the IV and thinking it was going to make me feel better faster than the orals.
Oh well. I need to stop being impatient I guess.
Posts: 71 | From New York, NY | Registered: Aug 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic