My LLMD says i clearly have neuro lyme, because instead of it affecting my joints its mostly in my head... Now i also know Bart gives the same symptoms.. How would i know if i just have neuro lyme or bart also?
[ 04-03-2011, 01:40 PM: Message edited by: Nicole2011 ]
Posted by nellers78 (Member # 26774) on :
I'm interested in this too, as I have a lot of brain symptoms also. Though I do have wide spread pain, bells palsy (tons of symptoms, really) -- the most severe are my fatigue and brain symptoms.
Posted by Nicole2011 (Member # 30672) on :
Yes, i have some pain in my body & joints but the majority is in my head as well
Posted by nellers78 (Member # 26774) on :
I'm sorry about that. I hate the pain but the brain stuff is far worse for me to handle. I've yet to be treated for bart, so it'll be interesting to see what happens when he puts me on meds for that co-infection.
Has your LLMD tested/treated you for bart?
Posted by Nicole2011 (Member # 30672) on :
i totally agree with you.. not feeling like yourself is worse then pain to me! & im suppose to be starting iv rocephin & zithromax april 11th
Posted by nellers78 (Member # 26774) on :
totally.
am wishing you the best with this new treatment! i'm sure april 11th can't get here soon enough.
Posted by Haley (Member # 22008) on :
I am the same way. All symptoms related to my brain. I have tested positive for Bart, Ehrlichia, Lyme, RMSF and Strep. I tested negative for Babesia but so far the medicine for the Babs helps my brain the most.
My point being. You may not know what is causing the brain stuff until you go on certain medicines.
Posted by TF (Member # 14183) on :
Nichole, you won't know if you have bart or not until your doc puts you on bart treatment.
The other way people find out is once they treat lyme and babs for a while, they can begin getting more and more bart symptoms.
The reason is, as you knock down the number of lyme and babs germs, the bartonella then comes out more plainly.
Posted by willbeatthis (Member # 31111) on :
Nichole: TF described exactly what happened to me. And yes, my doc thought I had neurolyme to begin with and gave not thought to Bart at least with regard to treating it in a consistent manner. It wasn't until after we treated Babs that the Bart went nuts... that was almost two years ago and finally, after getting to a Dr. Burrascano like doc, the Bart is getting under control. Hang in there and listen to the wise folks on this board as I wish I had done so earlier...
Posted by clueless (Member # 30019) on :
TF-
Are Bart and Babesia testing that reliable?
It sounds like no matter what (in certain terms) people just treat Bart- even if it comes back negative, dunno?
Thanks all
Posted by Nicole2011 (Member # 30672) on :
TF- I dont see how i would know when they give off the same symptoms, thats just how i look at it.. Because i compared the list & its like its identical with certain things
Posted by aMomWithHope (Member # 19255) on :
wondering the same for my child.......
Posted by missing (Member # 22437) on :
I definetly knew when Bartonella was gone!
I took Rifampin for 3 months and what a huge difference.
The weird suicide thoughts went away. The constant crying stopped! And I was crying sometimes for about 8 hours straight. I wasn't sad, but I just cried and cried!
I should check my notes again and try to give you more details if you need, because it has been a year since I was on the Bart. treatment.
My LLMD treated Bart. first , then went on to treat Babesia.
Also, on Bart. I seemed to be more dramatic about everything, and more sentimental, and overly giving for no reason. It is kinda really tought explain. I think I also was really impulsive, kinda bipolar.
I still get really impulsive, and have real intense mood swings, so I am not really sure what is Bart. or Babesia. I just know that I seemed to be more in control after the treatment. I also check with my husband a lot to make sure that I am not making huge financial decisions when the swings happen.
Now, don't think that I am a real mental case. I am very stable and tons of people really like me here, but it was something that I noticed and my very brilliant LLMD noticed.
I tested positive for Bartonella and negative for Babesia. I had very many Babesia symptoms, so my LLMD treated it anyways.
It is very easy to tell, in my opinion, if you have BABesia. You will sweat for no reason. Just dripping sweat even when you are just sitting around doing nothing.
My husband is in good shape, and he brought in the groceries. When he was done, he was soaked with sweat. I told him that it didn't seem normal. That doesn't happen any more now that he has had Babesia treatment. He is getting healthier.
When I used to go out for dinner with family, I would sweat so bad that my underwear and clothes were soaked by the end of dinner.,It was so embarrassing that I had to start buying special clothes and I would double up on my panties! hoping that it would n't show.
I have been in treatment for Babesia for a year, and I never sweat any more! yeah!!!! yahoo!!!
Hope this helps!!!
The more info that we give eachother, I believe, the better we can fight these illnesses!
Posted by TF (Member # 14183) on :
Testing for lyme disease is not very reliable. Testing for the coinfections is even less reliable. You can read this in the Burrascano Guidelines.
That's why some of the best lyme doctors just automatically treat their patients for lyme, babs, and bart.
Nichole, the way you will know you have bartonella is:
1) Your doctor starts treating you for bartonella and the medications cause you to really herx or get really sick. That is the proof. If you didn't have bart, the bart meds would not cause any reaction in you.
OR
You just start feeling fantastic on the bart treatment.
OR
2) After treating lyme and babs for a while, you may start getting bartonella symptoms that do not overlap with lyme symptoms such as:
red streaks or lines on your body terrible gut symptoms such as acid reflux, abdominal pain from eating, etc. dry eyes foot pain in the morning involving the heels or soles of the feet tender lumps along the sides of the legs and arms
Also, if you treat your neurolyme extensively and it doesn't really improve your anxiety, panic attacks, agitation, rage, change in personality, etc. then it is time to ask to try bartonella treatment.
The number one drug for treating bartonella is Levaquin (levafloxacin). So, if you want to ask to do a 30 day course of this, you can see what happens.
Posted by Nicole2011 (Member # 30672) on :
TF- im actually starting iv rocephin & zithromax next monday. will that touch bart?
Posted by TF (Member # 14183) on :
Nichole, this is not what is used for bart treatment.
Levaquin is the most effective drug for bart. According to my lyme doc, any med in the same class (such as Cipro) is also known to have some activity against bart. The class is known as fluoroquinolones.
This is what Burrascano says as an alternative to levaquin:
"Alternatives to levofloxacin include rifampin, gentamicin and possibly streptomycin." (page 24)
That's why we are saying you have to have treatment specific to bart to see how you react. The meds used for lyme are not the best meds for bart.
Each coinfection is treated differently. Your doc is not going after bart right now. That's just how it is.
Posted by Nicole2011 (Member # 30672) on :
TF- Yeah i understand, but someone else with bart was treated with iv rocephin & zith & went into remission..So i guess everyones different
Posted by missing (Member # 22437) on :
Rifampin got rid of very specific symptoms and they never returned. That really worked for my Bartonella treatment. I tested positive.
Then I went on to treat Babesia. Those symptoms are all disappearing.
I am also getting treatment for Lyme, those are slowly going away.
After 18 months of treatment, I would say that I am 70% better.
The improvement in the last month or so has been dramatic. This was due to the increase in my oral dose of Amoxicillin. I was on too low of a dose for it to be effective.
I am amazed at how much better I am just in the last month at being at the correct dose! It is like a miracle.
People need to be prepared to be in treatment for 18 months minimum, in my opinion, and probably 3 years just to keep it at bay. I bet there are lots that need the treatment for 5 years!
Stick with it! It is really difficult but worth it!
Posted by lyme in Putnam (Member # 11561) on :
My Bart was treated with Iv zither and that seemed to get it into hiding for some time. Iv rocephin kept the lyme at bay. Workedvtwice, the third was another story.
Posted by Haley (Member # 22008) on :
Nicole,
Try not to worry too much about which infection you are hitting in the beginning just follow your docs instructions. The bottom line is that you will need to treat all of the infections at some point. As the poster above said, it will probably be 18 months before you turn a corner. It could be sooner but keep that in mind so you are mentally prepared for a long road.
Rocephin and Zith is a good combination. Zith may have some effect on Bart but it is definitely not the drug of choice. That is the combination I started with (with Doxy also) and I started feeling better after about the 4th week.
You may want to ask your doc if he will be adding Flagyl or a cyst buster.
Posted by Nicole2011 (Member # 30672) on :
Haley- It probably wont take that long for me since i caught it considerably quickly. But your right Posted by TF (Member # 14183) on :
From page 4 of Burrascano:
"Apparently, in early infections, before extensive damage to the immune system has occurred, if the germ load of the co-infectors is low, and the Lyme is treated, many of the other ticktransmitted microbes can be contained and eliminated by the immune system."
This is how a person could be treated for lyme and their bartonella or other coinfection also happens to go away.
It's not thanks to the lyme medication. Rather, the body's immune system was able to control (or even eliminate) the bart once the lyme was killed with medication.
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