posted
My LLMD just sent me an e-mail telling me to immediately stop zith and mycobutin because my white blood cell count is low. He told me to have the test repeated in 5-7 days. Then he didn't tell me what will happen.
I am freaking out because I just started having some relief from my bartonella symtpoms after terrible terrible herxing that I wrote a lot about.
I am afraid of relapsing. Have other experienced this. Does it mean that I can't take the antibiotics that I need?
I e-mailed him back asking these questions and all he said was to get my blood tested again and to stay on the omnicef that I am on. That leave me only on omnicef.
What usually happens here? Have other experienced this? I am afraid of losing any ground that I have gained.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
Mycobutin is a form of rifampin and used for bart. It is supposed to be bad for wbc count.
I have no idea if I have erlichia! The LLMD has never suggested that I did.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme doc put me on Transfer Factor when my white blood cell count went low. It popped it right up, as evidenced by another blood test 2 weeks later.
This way, I never had to stop antibiotic therapy.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
TF - My doctor recommended that at one point, but the one he recommended was made from cow and chicken parts/cells.
My family was very leery of me taking it.
Do you know are they all made with bovine and chicken parts?
Do you know where I can get it?
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
My husband's LLMD recommended Oceana shark liver oil when Rocephin brought down his WBC. His WBC has come up a little--nothing dramatic, but enough to stay on the meds.
Viva
Posts: 532 | From southeast US | Registered: Oct 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
It is very common for the white count to drop.
It is also normal for the LLMD to have you stop meds for a while till it comes back up.
Once it is back up... you will most likely be able to start meds again.. possibly at a lower dose.
Tincup - I know you are right, but it is just so hard to take. I have been having horrible herxes and I just got to a point where I thought things were started to improve after six months. Now I have to go off the abx.
I think omnicef, which I am left on, only treats lyme not bart.
I really don't have a lot of choice. I will wait a week and get my blood redrawn and see where it is.
KMM
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
posted
DOn't worry. I was on abx for 1.5 yrs, until I started having gi issuues. Now, my doc put me off all abx until my stomach heals. I am taking spironul and nystatin for now, and I still have lyme symptoms, but it is right to be off abx for awhile to let your body take a rest. Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I think mycobutin seems to be more guilty of this than rifabutin (rifampin). can you take that instead?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You said.. "I have been having horrible herxes and I just got to a point where I thought things were started to improve after six months. Now I have to go off the abx."
Do not worry your pretty little head, Cher.
Until your clear out the toxins and junk that is making you so sick, you aren't going to get better.
The meds you are on have a shelf life. For example..
Zith comes in a "Z-Pack" of 5 rather than a 2 week course (for the average user).
That is because it is made to stay in your system for a couple of weeks.. so even if you stopped taking it... it is still active.
We've had folks get an allergic reaction a couple of weeks after stopping zith.. and the allergy was to zith.
So don't worry.
Me tinks you are covered... otay?
So just sing and dance for a week and hopefully you will feel better!
posted
Tincup -thanks for the encouraging words. This has just all been so hard, as I know you know.
I appreicate the support.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
posted
CD-57. I was on rifampin and he just changed me a month or so a go to the mycobutin. I don't know why. I guess I wait a week, get the blood work done, and see what he comes up with.
I have stopped freaking out mostly. Off to bed.
I hate this disease, but everyone already knows that.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kathy,
The Transfer Factor my doc put me on was bovine (cow) colostrum. He sold it to me, but you can also buy it at some health food stores (they can order it for you). Even, I believe, the Vitamin Shoppe. I think the Vitamin Shoppe may carry it in the store. The brand may have been called "4 Life." Not sure on that part, but that's what the ingredients will be--bovine colostrum.
It works wonders. That's all I can say. The colostrum is the first "milk" that a mother produces before the real milk production starts. It is full of the mother's immunities and is an important source of immunity for the newborn.
So, it's not that you are taking cow "parts." It's more like dehydrated cow's milk to my mind.
Hope that puts you more at ease about it.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
It could be the rifampin as my WBC is low too neutrophils are .9 (2.0 - 7.5 being normal)
But don't worry Tincup made excellent points and gave excellent advice.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
| IP: Logged |
posted
I am pretty sure that it is the mycobutin and the zith. I assume that it will go back up. I just hate the idea of being off the drugs. Everyone here assures me that it will by okay for a short period of time.
Thanks.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | 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!
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic