Seeing LLMD next Thursday.

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Veteran Member

Date Joined Jul 2006
Total Posts : 652
   Posted 6/3/2009 8:18 PM (GMT -7)   
Should I request a SPECT scan?
I'm going to mention to my doctor that I've spoken with many of you and that it seems I may have Babesiosis or Bartonella...even though he already tested me for Babesiosis and it was negative. He had me on Doxy (I believe 400mg/day) the last time and that was supposed to go for three months but I only made it for one.
For those of you following my posts, do you have any other suggestions?
Thanks for listening to me last night, those of you who did...I felt so alone and it really did help.

Veteran Member

Date Joined Jan 2009
Total Posts : 914
   Posted 6/3/2009 8:35 PM (GMT -7)   
I'm glad you're feeling better. This darn disease can make the strongest person feel very alone and scared. Anyway, I would definitely recommend asking for a SPECT scan. I think the SPECT scan report was one of the reasons I was approved for IV Rocephin and I'm sure it also helped support my disability claim.

Regular Member

Date Joined Oct 2007
Total Posts : 259
   Posted 6/3/2009 8:52 PM (GMT -7)   
How long have you been sick and what testing have you had done?   Personally, I  first got sick in 2004 and I didn't come to reasonably know what I had until Jan 2008.    A doctor first suggested lyme back in 2006 but they ran the other test besides western blot, ELISA, I believe, and it was negative.   When I finally got to do the WB in 2008 it was even positive according to CDC standards(or at least, the test results from Igenex had information claiming that to be the case). 
Over the last 4 years I've done probably 20+ standard blood tests...and just between 2004 and 2008 I hit up the ER with chest pain(or palpitations if not pain) 4-5 times,  done several cardiac ultrasounds, and so on.  Back in 2006, I had just went to visit a 3rd general practitioner trying to get answers, and the first thing they suggested was the lyme, did the ELISA, it came back negative, then they sent me to a neurologist, who did a head MRI etc(which only showed some sinus irritation, apparently that's not uncommon), then I got sent to a sleep apnea specialist(because of waking up in the middle of the night with a numb chest).  None of that was actually the problem, of course, so I was pretty frustrated to be back at square one.  I even went and applied for an extra life insurance knowing they'd run a blood test of their own, I figured I'd try and make Murphy's law work in my favor.  That didn't work either, they didn't find anything wrong but as a matter of principle they rated it(charged more money for the insurance)just because of all of the tests in my recent health history!   Finally after all that I began combing through known illnesses on the internet again and finally I settled on that it MUST be lyme, ended up doing a WB and CD-57 and therefore, I'm reasonably certain that it is lyme that I have.  Though, I'm somewhat intrigued by the WB's results explanation which includes a warning that syphilis and other things can trigger the same antibodies. 

Veteran Member

Date Joined Apr 2009
Total Posts : 1013
   Posted 6/3/2009 9:57 PM (GMT -7)   
Jendays, hun your never alone long as we have this great fourm here, maybe we can not see each other face to face but we all care for the others in here, we all have gone thro or is going to go thro the same triales and tribultions. we have to be able to help each other as its only us who seem to care. you have my email addy feel free anytime to contack me. i am just glad you going to see your Dr. and if he/she is open enough explan to them everything you have felt. leave no stone unturned. do not be enbarist, they hear everything.

just know in your heart your among friends here :)

still looking for answers

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 6/4/2009 12:39 AM (GMT -7)   
I'm so glad you are feeling better. You really had me worried. And I'm so, so glad you have an appointment with an LLMD!

You want to be prepared when you go in, so write down all of your symptoms that you had when all of this started and any you are having now and if they have changed. Write down any symptoms you had when you were on the Doxy also. Sometimes, you may have a symptom that you think is from something else but its actually from Lyme. Bring in all of your medications or any supplements or herbs you are taking. Write down everything you want to discuss/ask your doctor because once you get in there, you may feel overwhelmed or forget. And last but not least....research if you haven't done so yet. I spent many hours looking things up before I saw my LLMD.

Good luck!
2003 symptoms started
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements

Turquoise Sky
Regular Member

Date Joined Apr 2009
Total Posts : 250
   Posted 6/4/2009 6:56 AM (GMT -7)   
You had us all concerned! It's hard when you feel so bad all the time, and when it feels like nobody understands, it's that much worse. It takes time, and it's scary to think of what is going on inside our bodies, but it is amazing what we are capable of too. So glad you are not giving up hope!

Veteran Member

Date Joined Jul 2006
Total Posts : 652
   Posted 6/4/2009 9:46 AM (GMT -7)   
I've had the same LLMD for 3 years. I already wrote down everything yesterday - I wrote down symptoms, what I'm taking, what tests I want to ask about, and some random questions I have for him.

I think I'm prepared...ya know, except for the whole part about getting up that day, getting there and having to actually sit up for the whole appointment.

I AM wondering youguys really think abx can cure people to the point where they don't have to take them anymore? I know he's going to put me back on abx, and I hear stories on tv and stuff about people who have 'gotten better' ... but not many people here seem to pleased with their therapy unless it's herbal or alternative. I don't know what to think, really. I just want to feel better and not ruin my body in the process.

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 6/4/2009 10:11 AM (GMT -7)   

Hi Jendays247.  If it has been three years since you have been tested, it would be good to get tested again for all the infections.

Some Lyme doctors treat with traditional and alternative therapies combined.  I think this is a good approach.  It is also important to do things to help strengthen your immune system such as eat healthy, drink a lot of water, get enough rest, exercise whenever possible, take appropriate supplements, and do things to detox.

Good luck at your appointment!  Please let us know how it goes.


sickof lyme
Regular Member

Date Joined Aug 2008
Total Posts : 110
   Posted 6/4/2009 10:47 AM (GMT -7)   
I have babesia and I tested negative untill I got the Babesia Fish test done through IGENEX ,They take your blood smear and hold it under a flouresent light and they can actually see the parasite in your blood so thats another option for testing!! Babesia causes sweating so it may be good for you to get done!

Regular Member

Date Joined Jul 2007
Total Posts : 296
   Posted 6/4/2009 3:31 PM (GMT -7)   
Jen- Antibiotics only took me so far. When I went off of them after 2 years in January, I felt like I was going out of my mind. The Lyme just made me crazy very quickly. By March, I honestly felt there was not much point to my life. I wasn't me anymore. Am now trying Dr. Zhang's herbs and I feel the best I have been in over 2 years. I am fortunate he is not too far from me. I also use an infrared sauna to detox and got a Rife machine. Trying to hit this from all sides without the antibiotics. And there is a local massage school down the street that offers $35 massages by the students and they help as well. I really feel there is real hope.

Veteran Member

Date Joined Jul 2006
Total Posts : 652
   Posted 6/4/2009 8:14 PM (GMT -7)   
I had the Igenex babesia test done and it was negative.

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 6/5/2009 9:28 AM (GMT -7)   
How long ago did you have the test?  Did you have both the antibody and the FISH test done?

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 6/5/2009 9:55 AM (GMT -7)   
rcenters said...
 I'm somewhat intrigued by the WB's results explanation which includes a warning that syphilis and other things can trigger the same antibodies.  
During the first 2 to 3 years, E V E R Y T IM E I went to a new doctor.... they would walk into the room all full of themselves and announse, "Well you don't have syphillus."  It got to the point  where I would tell the doctor ahead of time... "Oh, by the way, I don't have syphillus." - haha!  What a bunch of I D I O T S ??????????????? 
  rolleyes   rolleyes rolleyes rolleyes skull   skull skull   shocked shocked smhair shocked shocked skull skull skull rolleyes rolleyes rolleyes rolleyes

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", song

Veteran Member

Date Joined Jul 2006
Total Posts : 652
   Posted 6/5/2009 10:04 AM (GMT -7)   
I've wondered at times if it IS that crazy? I only wonder because all of my symptoms occurred right around a time I had slept with someone new and thought I was pregnant. I did get tested for HIV and Syphilis about 6 months after being with this person and both were negative...but I still do wonder.

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