Something interesting about Bart

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seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/4/2008 7:54 PM (GMT -7)   
Earlier I had posted about cd57 and how I got a whopping 13. I had
asked if there was a possibility that my bart (which is messing with my
spine bone among other things) could actually affect my cd57 #. Well
I think I found info implying it can. CD57 is found by using some ratio
of CD57 and CD8. Bartonella can impair CD8 according
to some articles I researched on the web. So now I guess I don't
feel so bad about my low 13. I don't think it's the lyme that made it
so low. I have been sooooo sick but knew it was not the lyme and
when my CD57 came back so low I second guessed myself on what
my biggest issue is. Now I am back to believing it is this bart crap.
But I do have impaired thinking skills at times due to this illness so
someone may prove me otherwise. But at this point I just thought
I'd share that from my research Bart can mess with your CD57#.

Also I wanted to ask anyone with bart if you keep getting normal
c-reactive protein #s from blood draws. I swear to my doc
constantly that my neck and head are swollen. So he'll do the
c-react. test and it comes back normal. In my research I have
found articles one in particular by Dr. J.S. saying Bart shuts off
the immune system and the inflammation system in some parts.
So, I guess I'll take that as the reason my blood doesn't register
what I feel.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/4/2008 7:59 PM (GMT -7)   
I think I need to clarify my 13 was on the scale of 60-whatever. Meaning

I failed pretty bad.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 12/4/2008 8:00 PM (GMT -7)   
Can you fill me in on what CD57 is...lol and CD8?
I have bart too, but do not know that much about it really. My lyme has kept me busy. lol
marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/4/2008 8:14 PM (GMT -7)   
I am not an expert in it but I can try to give an overview.

It is a test that some doctors go by to see how your immune

system is dealing with Lyme. Some doctors believe it is a

specific indicator of Lyme. Others don't go by it at all. My

usual doctor does not use. I went to an infectious disease

doctor that treats a whole lot of lyme people and he did the

test. From my research tho I would think the # could be

screwed up by your bart and maybe other infections.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/5/2008 9:23 AM (GMT -7)   
An ID dr that treats lyme? that is rare

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/5/2008 9:29 AM (GMT -7)   
actually if you look back at one of my earlier post titled CD57 (I think) I stated what he did.

I think he was very irresponsible in telling me because my other tests were neg. I was only

dealing with lyme. But just like you phsinvent, If i stop meds the symptoms rush right back.

Dr. Burscano (sp?) says that's a symptom of bart.

Anyway, this doc. is in Kansas City and supposed to be a top treater for tick illnesses. I

wouldn't tell anyone to go to him. I guess if you were in a pinch but even then to get an

appt. it is a year wait. You may be waiting for a disappointing visit. HOWEVER, he does

believe I am dealing with an active lyme infection.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/5/2008 9:37 AM (GMT -7)   

oh that makes sense. if the dr doesn't believe in co-infections, you would never get better. Unless you are the lucking one in a million that gets lyme without a co-infection.

I've remained symptom free for a while now. I usually make it 2 months before things start creeping back. I keep doing 3 months on abx and 2 months off. I run about 99% of my formal self, and the first symptoms to creep back is a few muscle twitches here and there. Each time i come off abx, it gets longer and longer without abx before it starts creeping. I have been treating myself for 2 years now so i guess i have more flexibility than some. That way i'm able to see which combos work and which don't. Maybe i have licked the bart and babs. Who really knows.


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/5/2008 9:45 AM (GMT -7)   
I was wondering how you were doing. I look for your posts often because I

seem to mirror a lot of what you went thru. But I don't think I have babs. I

also admire you that you took control. I wish I had that power. My usual lyme

doc is awesome but I still have to go thru him. I have become more educated

in this bart crap than him I think. Anyway, I am so glad to hear you are doing

great. Gives me hope. Please continue to update us tho. I'm curious how you

are able to get the meds without a doc tho? care to share that info? I find your

posts on what drugs have worked and which didn't so well very helpful to me.


Thank you

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/5/2008 11:03 AM (GMT -7)   
So, Frango

what are you taking for abx now? what ills do you believe you have?

My regular doc that I see, that I swear does not get paid enough to deal with me is an internal medicine doctor. I wish I could clone him. I have to drive 3 hours one way to see him. But that's the closest best doc available to me. He is really nice. He often has me call him instead of going all the way to see him. And I don't get charged.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/5/2008 1:31 PM (GMT -7)   
Frango,

I love Target. Anyway I was wondering what type of B12 you do. I do cyanocobalam shots but I read that's not the best type. I also wondered about that nystatin. It kills yeast. Some of the Good probiotics are yeast. Don't you think nystatin may be killing your probiotics?

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/5/2008 5:14 PM (GMT -7)   
Frango: I am always interested in peoples protocals. May I ask you, what is methylation? D

Dowa
Veteran Member


Date Joined Sep 2008
Total Posts : 1120
   Posted 12/5/2008 7:25 PM (GMT -7)   
Interesting, I took glutathione IV in Boston and it helped alot. Thank you, I will read the links you put in the post. May I ask, do you glutathione IV or injections to get the level back to normal? Thanks D

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 12/7/2008 2:47 PM (GMT -7)   
http://www.heartfixer.com/AMRI-Nutrigenomics.htm has additional info about methylation and the genetic variants some people can have that can affect the methylation cycle. Glutathione is NOT good for those of us who have the gene variant that increases sulfur and ammonia (like me). If you have no trouble tolerating sulfur foods (onions, garlic, asparagus, broccoli, cauliflower, cabbage, eggs, etc.) then you likely don't have a problem with this particular gene variant (the Cystathione Beta Synthase variant).
Edited to add:  For the person who asked about CD8, CD8 is a type of lymphocyte (white blood cell) known as regulatory T-Cell.  When CD8 is low, one can be more prone to developing autoimmune or allergic reactions to things because the regulatory T-Cells are insufficient in number to control lymphocyte response.

Cheers,


-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

Post Edited (Razzle) : 12/7/2008 2:50:14 PM (GMT-7)


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/7/2008 3:23 PM (GMT -7)   

If you want to save your $, time etc. I reccomend N-acetyl Cysteine and alpha lipoic acid supplementation to increase Glutathione levels. Both are responsible in increasing glutathione levels in the body.

I've taken both of these for a couple years now and this may be the reason i am doing well. Alpha lipoic acid itself is a great super antioxidant and has so many uses. Combine alpha lipoic with milk thistle and you have the greatest protection for your liver during long term abx use. ALA combined with milk thistle is a common treatment in europe for those that suffer liver damage.

I also higly recommend you take Vitamin C along with the N-acetyl cysteine. Long story but it is highly advised.

Seeingstars: I'm doing rather well. Thanks. I've been ordering overseas abx for a while now. I wouldn't recommend this route for everyone but i did not see eye to eye with my lyme dr and it is hard to find a lyme dr anywhere in ohio. Plus paying all that $ out of pocket and getting stuck on some protocol for 3 months straight before he would switch up. Just not my style to travel so far and pay so much when i just argue with my dr about what i think i need. Below are a few sites where i've ordered all the generic and name brand meds for the past 2 years without a prescription. Hopefully it is ok to post this.
 

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 12/8/2008 12:07 PM (GMT -7)   
phsinvent,

Yes, NAC and ALA are great -- IF one does not have sulfur tolerance problems caused by genetic variances (like I do). I get sick when I take ALA and NAC because both are processed by the sulfur enzymes that are already overloaded because of an up-regulated gene in my methylation cycle enzymes. That's why I posted about this above.

Good luck,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).

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