- This topic has 2 replies, 3 voices, and was last updated 9 years, 8 months ago by
.
-
Posts
-
Hey everyone – so I spoke with my PCP today and am so thankful I have such a wonderful, caring doctor. I am not kidding – she spent a whole hour with ME, discussing my bloodwork (likely RA), but completely a believer that this may be Lyme related or induced. She said that 6-8 years ago, she never would have even considered this could be Lyme, but has since done a lot of research and has seen first hand the long-standing painful effects of patients who are just not getting better. She has changed her tune and is a strong believer that tick-borne illness likely have sparked many rheumatic- looking conditions. She said that even though the CDC recommends 3 weeks of doxy there is no way that is enough time to kill these lyme bugs.
Thoughtful, caring, partnered and present she was. She dug in my file, reviewed past visits – the time I had a scary vertigo episode at work in 2006, my follow up with the neurologist and then his “diagnosis” of basilar migraines. My childhood sickness of cat scratch fever (yes I really had this in the early 80’s) and my lymph node surgery as a result – so I definitely had Bartonella infection as a kid. We concluded that tomorrow, I would submit my blood to IGENEX to really know and she and I will discuss outcomes and perhaps follow up with a LLMD . I will also bring those IGENEX results to my first Rheumy appt on October 8th along with my CCP positive bloodwork.
Even if this is not Lyme at all and purely RA – I need to know. I expressed my concern over Mtx meds especially since I have no physical signs of RA yet and she agreed that I should likely start the least damaging route and give abx a try. I just felt so listened to, my PCP is truly a blessing to me. 😀
Anyone care to share IGENEX experience? I don’t know much, how long til results come back?? Cost approx.? Thanks!!
Hi I started my journey with morphea with road back and with the help of members in this group realized this could be linked to lyme.
Igenex costs $200 for both igm and igg western blot. Takes almost three weeks for results. Felt like forever.
Might want to consider galaxy labs they specialize in bartonella. Bart is very very hard to find in blookwork. Being that you tested positive as a child and most probolobly had only a short time on antibiotics you most probably are still infected.
Reach out to Maz, she is so knowledgeable in RA and lyme.
Run to an lyme literate doc. They will truly be the only docs who have the experience to battle this!
Search posts by. Maz she is a walking encyclopedia!!!
There are two tests which according to Igenex help further in the diagnosis of lyme and which you should only do if you are at least 6 weeks of the abx. The blood PCR test, which is normally included in the basic lyme panel + PCR test as they offer and the separate to be ordered dot blot assay urine. Both test look at evidence of the actual bacteria vs looking for antibodies. If you haven’t started yet taking abx this is the time to consider adding these test on. I would give myself a week to get more familiar and if you have the extra money that this requires do them all at this point. The dot blot normally is also done with a short and intensive abx course just for the test is done. I had to take 6 weeks of abx, just to do this test. If three weeks is long, waiting for IGX results, 6 weeks of the abx is even longer! 🙂 Give yourself some time to get familiar and do the right tests first time. You can call IGX and get an explanation. You don’t need an LLMD to do the test, any doctor can sign of is my experience, but it is great if you have the results in hand walking into the LLMD office (there is seems to be waiting lines for LLMD’s) Success!
You must be logged in to reply to this topic.