Little about myself I was diagnosed with lyme in December 2015 I was so confused at what was going on with me, I thought I was dying with most my symptoms being neurological and strong strong strong fatigue which I still struggle with sometimes.
Long story short I found a LLMD in january to help me but my wbc keep dropping to maintain treatment. So far I'm on rocephin 2GM 4 days on 3 days off. But thats it I feel my dr who knows I have bartonella is ignoring it. I still have constant twitching, overactive nervous system, fatigue, and constant changes in anxiety and depression sound and light sensitivy.
I'm wondering what you guys think I should do as my LLMD isn't really giving me options. We have yet to put me on anything for Bartonella and I've been on treatment for maybe 7 months now. Tried septra , and minocycline, and doxy but WBC would drop from 4 to 2.
Any help is appreciated love this forum
Posted by TF (Member # 14183) on :
When I was in treatment and my white blood cell count went low, my lyme doc put me on Transfer Factor. The active ingredient was bovine (cow's) colostrum.
In 2 weeks, my count was back up to normal. So, that worked great. Eventually, the count went low again so I went on the Transfer Factor again and it worked again.
The third time my count went low, my doc told me to just stay on the Transfer Factor until I completed my treatment.
The body senses the antibiotics you are being given and decides that it does not have to produce as many white blood cells (which fight infection) since the antibiotics are there. So, it is common to get a low white cell count during treatment.
The Transfer Factor enabled me to continue my treatment without a break. Be sure the one you get has bovine colostrum in it. Colostrum is the first milk that a mother produces. It gives the newborn all of the mother's immunities. So, that explains how it works.
The brand my lyme doc had me take was 4Life. So, I highly recommend that one.
Just to be clear, are you saying that you are just on rocephin right now? 2gm 4 days in a row? You say the doc tried septra, mino and doxy but your WBC count dropped.
So, are you saying that he is now treating you with just one antibiotic because of that?
How do you know you have bartonella? You need to have a discussion with your doctor about when he will treat you for bart. If you don't like his answer, then you may need to look for another lyme doctor.
It is not good to be just on rocephin. But, perhaps you have not given us the full story since you do mention that the doc tried you on 3 other meds. The advice we give is strictly based on what you tell us, so try to tell us as clearly has possible exactly what treatment the doc has given you so far.
This way, our advice will be based on a clear picture of what has happened so far.
Welcome to LymeNet! We will help you here all we can.
Posted by Tincup (Member # 5829) on :
Welcome to LymeNet!
Just a few thoughts to consider...
1. Could it be the LLMD doesn't want to add another antibiotic right now since you are still having what could easily be Lyme symptoms? He/she perhaps wants to treat one disease first... maybe because you are pulsing now, meaning you can't handle more treatment yet and need that time to detox?
2. Should another antibiotic be added at a time when your WBC is so low? I personally wouldn't do it.
3. Rocephin is commonly used to treat Bartonella, often quite successfully, so treatment isn't really "wrong" at this point.
4. Could those symptoms you listed- twitching, overactive nervous system, fatigue, and constant changes in anxiety and depression sound and light sensitivity- be exacerbated when you are herxing and/or because you are not clearing out toxins as fast as you should?
Posted by droid1226 (Member # 34930) on :
I don't think that's nearly aggressive enough. Since your vomiting, I think it's crucial that everything that you put in your mouth be written down.
Look for a pattern. See if u can find what is triggering overstimulation, nausea, fatigue.
It might seem pointless but you can go a couple yrs of not doing it, then suddenly do it & start recognizing triggers. Then you'll wish you'd done it earlier.
Also, talk to your dr.....Have u ever been on a benzo or was illness triggered from some type of trauma or medicine?
I did 4gms of rocephin everyday for 2 yrs while mixing in different IV's & orals of other antibiotics & still felt I could do more. Try to get them to be a little more aggressive.
Btw...Bart was my biggest problem & if I could start it all over again, I'd only take levaquin for a couple months. It helped me make strides. But most everyone on here & everywhere else will tell u it's poison....which it kinda is. U just have to take it correctly/carefully.