From what I have heard, it is almost impossible to really detect the different strains of the co's.
Most co's are determined from symptoms alone because they don't always show up even on the IgeneX tests.
I have mycoplasma pneumonia as well as Bart's and Babs. They need need to be cured differently then lyme.
There is just so much symptom overlap, that I don't really see how it is even possible to clinically diagnose all of this stuff.
Some symptoms are very specific. My Babesia came back negative yet I had the terrible sweats and air hunger which Babs is known for.
I have lesions on my brain, on my spleen, on my chest and those are Bartonella lesions. My test came back positive but I knew I had it before I got the results.
Other symptoms may overlap.
Have you been tested for any other coinfections? My symptoms are like hit and miss. Nothing is really consistent enough to lead me to any particular coinfection. For instance, I may have night sweats twice a month or something like that. Same is true for the air hunger. And since I do not necessarily herx, it's been tough to know.
Now the psychological issues and fatigue are HUGE, but I'm not sure how/what coinfection that ties into.
I'm awaiting my test results on the coinfections, but I expect them to be negative either way.
I came back positive for mycoplasma through a regular lab. I have been tested for all the Co's through IgeneX.
The psychological issues are usually from Bart's but Lyme can also affect it.
I had day sweats as if I stepped out of the shower. It was bad. I never had night sweats. Most people I know have day sweats.
My fatigue is huge too. I started taking rhodiola tincture which gave me some energy.
Thanks. Were you positive on IgM, IgG, or PCR for mycoplasma?
I get real hot and sweaty with any kind of physical activity basically. I just figured that I'm out of shape. When I do get night sweats, I just figured it's because of my thick comforter.
I believe it was PCR for mycoplasma.
You could have Babesia. What does your LLMD say?
She doesn't say much actually. I have not been able to isolate any herxheimer with the Mepron, so I don't know.
Hi, I was happy to hear you got your mojo back after treatment. I've been misdiagnosed for 9 yrs now. I can't begin to tell you how sick I am now. I can't find a llmd here in Sarasota. (I live in Nokomis). Would you please tell me the drs name that helped you. I took a Lyme test in 2006, that came back neg. I just found out that a Lyme test is less than 45% accurate, so I just took another & I'm waiting for results. For 9 yrs I've been told I have DOP. I have every Lyme symptom listed except one. At this point, I need a really good Dr to help me. So if you could please tell me who helped you in the Sarasota area ? TY
Welcome -- Sorry to hear all you have been going through.
Some tests are better than others. What tests were you given? If you have copies of the results (which you should always get and keep), it will say.
If you search online for
-- florida lyme disease association --
it will give several organizations who could have good info on locating a local doc, in addition to any suggestions Mojogal has.
TY for responding. Tests should be back any day, WesternBlot & full panel.
I was referred 3 drs by I lads, one I had already seen (dop), one wasn't a llmd & the 3 red had terrible reviews. None of them were close to where I live. And its after read so many people not getting better or the disease came back after spnding thousands of dollars & loseing there homes. Then theres the horror stories, where the treatment killed them. I have seen over 35 specialists, 5 of them infetcious disease & being told i have dop. I even made a video showing the organisms from my body swimming in water, to show that there a "real" living thing. And that didnt work. I even offered to do it right in front of them, if thay had any doubt that the video wasnt real. Just found out about the test % , so i called IGenx & ordered my own test. So now i can walk in with proof that what i have is real. When did drs stop believing the patient !!
So to hear about a dr right in my town that helped mojogal, gave me hope & security to get the right treatment. Im hopeing to hear from her.
I'm leaving now for the ER, what a joke that has been in the past. But i dont have a choice today, I'm so swolen from head to toe, & reg phyician hasn't helped me. This has been going on for months, but keeps getting worse every time. So bad I can't wait for the test results. I feel like my whole body is infected.
I'm new at using a computer. Lol but is there any way to connect to mojogal directly ?? Don't know how much more my body can handle.
Thank You for your ear, have a great day.
About convincing the docs who don't 'believe' in Lyme as anything serious: at this point, it's pretty much a lost cause, tho eventually it will change. In the meantime, the trick is to find a doc who DOES understand Lyme, and ignore the rest of them.
Finding a wise doc who is easy to work with is the key, and it's often done as you have approached it: by trial and error, until you stumble onto a doc who understands and takes Lyme (and the patient) seriously. Just ignore the docs who don't understand. If I had a doc who had a reasoned argument about why the LLMDs are wrong, it would be different, but the naysayers just have the same old approach that Lyme is hard to get and easy to cure.
You say: "I was referred 3 drs by I lads, one I had already seen (dop), one wasn't a llmd & the 3 red had terrible reviews."
There is no test to determine who is an LLMD, and it's not a title or degree, so it's unlikely an MD would say, "Yes, I'm an LLMD." Being an LLMD is a state of mind and an understanding of medicine and science relating to Borrelial infections (aka Lyme disease).
You say: "And its after read so many people not getting better or the disease came back after spnding thousands of dollars & loseing there homes." I think it is possible to get infected again after curing a case of Lyme, but there is also the possibility that the treatment was not long enough and/or that other diseases the "Lyme" ticks carry could be lurking, and those diseases often require different testing from Lyme and different medication.
You say: "Then theres the horror stories, where the treatment killed them." I haven't read this anywhere.
You say: "I have seen over 35 specialists, 5 of them infetcious disease & being told i have dop." Infectious disease MDs are often the most clueless when it comes to diagnosing and treating Lyme. They have fixed ideas about Lyme and the coinfections, and there is no talking them out of it. Not yet. Someday. "dop" -- is that delusions of parasites? The docs won't believe what they are not ready to believe.
You say: "Just found out about the test % , so i called IGenx & ordered my own test." They may send you the kit, but they may not be willing to process the kit without an MD's order.
You say: "is there any way to connect to mojogal directly ??" You can send a private message through this website by hovering your mouse over the person's screen name at the beginning of one of their messages, and a box will open up that has several choices. Click on "Send Message" and another box will open up for you to type your message in, and then send. This website will forward your message only to the person you indicated, but preserves confidentiality for all concerned.
Best wishes -- and don't give up till you're sure you've gotten good advice and proper treatment.