A friend diagnosed with babesia and Lyme, anyone getting this weird symptom?

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Robin O
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Date Joined Feb 2006
Total Posts : 1206
   Posted 3/28/2009 6:08 AM (GMT -7)   
Hi to all!
 
She wrote me and asked me to post this to see if anyone else gets this same feeling. She had tested pos. for babesia but once again, the doctor failed to give her her test results.  Just another case of devastation for her and her family. 
 
I took this right from the e-mail she sent me.
 
"But the strangled like feeling is going on again and it bugs me out. I swear, it feels like something is strangling my veins in my neck and head.  It's terrible. The weird part is, its how I felt in the beginning of this (meaning a year ago). It went away for a long time, this particular feeling. Is it a good sign I feel like the beginning again? It's a very scary real feeling, I know something is messing with the veins/vessels/nerves in my neck (front) and head. 
Sorry, I know there is nothing you can do...but this is the worst....have you heard of others complain of this?"
 
Thank you for listening to my crazy symptoms. :)
 
 
 
Thanks everyone!
 
Hugs,
 
Robin

minerals
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Date Joined Jul 2007
Total Posts : 943
   Posted 3/28/2009 12:24 PM (GMT -7)   
I am sorry your frined is suffering so much. I had babesia (I think it is gone?) and had been treating it for almost 2 solid years. It is difficult to get rid of. I had the head neck strangling feeling for 3 years before being treated. She needs to see a doctor who knows how to treat lyme and co-infections or she will surely get worse. I was on an antimalerial drug called mepron along with zithromax which seemed to take care of it--but it wasn't quick. However within weeks of being treated the head neck (severe stiffness and pain)issues (like my head`was in a vise)...began to improve. Blessings

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Robin O
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Date Joined Feb 2006
Total Posts : 1206
   Posted 3/29/2009 6:43 AM (GMT -7)   

Hi minerals,

Thank you so so much.  I have people coming at me from all angles, so sick.

Here is what she is taking, as she wrote me about a week ago when I asked her what he is doing for her. She currently sees Dr. S (male) in New Jersey but he has always concerned me about how he started her off months ago, to summarize, he gave her antiobiotics equivilent to treating a sinus infection.

 

All Dr S. did was up my flagyl. So 1000 mg of flagyl plus bactrim 2x a day. Is that the right thing? I don't know anymore. He's been doing this for 20 years which I take as a good sign but still am worried. Haven't gotten very far. Slight progress. Some progress. But still freakin awful! I read 12-18 months on the burrascano guidelines.
 
 
Thanks again minerals!!!!  We all need so much help.  I love people who try to help others.  That has always been my mission since infected.
 
I had the vice sensation on my head. It felt like I was wearing a baseball hat really tight, but definitely a bit more strange than that.
 
Her symptoms are just throwing her into panic state. With two little children, well, do I need to say anymore? 
 
Take care!
 
Robin O.


ticker
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Date Joined Feb 2003
Total Posts : 9208
   Posted 3/29/2009 7:07 AM (GMT -7)   

Hi Robin.  I am sorry your friend is so sick.

It does not sound like the meds she is taking is for Babesiosis.  Maybe her doctor is targeting something else now?  Does she have other co-infections also?  I suggest that she ask her doctor what infection he is targeting with these meds.  Maybe he is planning on addressing the Babesiosis later?

As minerals posted, Babesiosis is typically treated with an anti-malarial (such as Mepron or Malarone) and an antibiotic (Zithromax, Biaxin, or Ketek).  Babesiosis can cause severe vice-like headaches.

I hope your friend gets relief soon.


Nexis
New Member


Date Joined Mar 2009
Total Posts : 15
   Posted 3/30/2009 3:06 AM (GMT -7)   
I have that exact symptoms both the tight helmet feeling on my head, robotic head! and a very stiff and tight feeling in my neck front and back and by head feels very heavy and stiff, neck too.

I was tested positive for the Babesia FISH and IgM 1:8 yet tested negative for the PCR. Yet Negative for Lyme.

I still have not gotten treated, yet the above symptom has been one the highlight feature since I came with the sudden strange condition.

Robin O
Veteran Member


Date Joined Feb 2006
Total Posts : 1206
   Posted 3/30/2009 6:55 AM (GMT -7)   
Hi Ticker and Nexus and minerals:
 
You are all awesome for trying to help her!!
 
I will show her this post.
 
Good point about babesia Ticker.  I wonder what he is doing? 
 
I will forward this information on to her. 
 
She is seeing a lyme literate doctor but I think he is just not aggressive enouigh.  Let me restate that. I KNOW he is not aggressive enough.
This is such a mind game for those infected.  But, it could be worse. We all could have been diagnosed with the wrong diagnosis and fell into the trap so I am so thankful I know what my issue is and got treatment for it. 
 
I really want to help her.  I don't think I told you guys this but when she was trying to figure out what was wrong wtih her, her previous pig of a doctor offered her three breast exams and pap smears.  Grosss idiot.  He NEVER once thought of lyme disease even though she had ever symptom. Oh yes, when a year later she was told she tested for babesia, just never told her the results.  What the heck?
 
Thanks so much again everyone!!!
 
Hugs,
Robin
 

Post Edited (Robin O) : 3/30/2009 7:59:41 AM (GMT-6)


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/30/2009 3:36 PM (GMT -7)   
Dr S in NJ has been good to me thus far. U have to be proactive with him and ask him alot of questions as he doesn't really offer up too much conversation. he does know his stuff though. i'd ask him what his plan is for her, why he chose that medication, etc before saying hes not treating aggressively enough. all the questions i had for him(i wrote down about 20), he responded to very logically and reasonably. just be proactive with him, do your own research so you are educated on lyme and other co-infections and this way. with your health, and especially with lyme, you have to be educated. look up standard babesia treatment protocols and ask him why he's doing it one way and not that way, etc.

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 5 mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 

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