Dx'd Fibromyalgia...Second Lyme Test Necessary?

Thank you for asking.
I have felt like a walking zombie for years but I thought I was just getting old.
In my family, saying you were ill was thought to be a weakness. I have beaten myself up for years
because I am so tired all of the time. I was taught that tired meant lazy. I have not yet absorbed the fact that my fatigue could be a result of illness. That would actually make me feel better and relieve some guilt.
The problem with denial is that the truth gets lost.
I have severe tinnitus and headaches, diagnosed as TMJ related.
I cannot wake up in the morning. If not for my dogs I would stay in bed. As it is, I stumble around for 2-3 hours, finally wake up, but must nap again in the afternoon.
I cannot make decisions so I guess brain fog would qualify.
My hands are often numb.
I have been able to cope with everything so far because problems seemed age related... until this fungal sinusitis. I am searching on the forum for someone with this experience. It is different from bacterial. Invasive and non-invasive. The invasive is often fatal. Endoscopy is the recommendation which often must be repeated. In my case, since the Lyme came first, it makes sense to treat that and perhaps the fungus will resolve. I hesitate to see an ENT who knows nothing about Lyme.
See how confused I am?

Post Edited (xlyzd) : 4/16/2018 11:20:37 PM (GMT-6)

I think you should go straight to a LLMD and get evaluated and start treatment.

You've got a lot of Lyme and co's symptoms. You do have a positive test for Lyme.

You can still go to the ENT after.
We do need other dr.s sometimes.

Prior to Lyme I went to an ENT specialist for throat issues...and also was tested for sleep apnea, and tried a c-Pap (didn't help)
Since treatment, the throat issues are much better...and I'm considering getting a retest for sleep apnea as I am sleeping better now.
There are so many symptoms that Lyme and its friends can cause.

If you need help finding a LLMD, start a new thread: Looking for LLMD in/near_______
Fill in the blank with your location.

So you do know Dr J has his clinic in Washington DC now?

Maybe not close enough to you.

Yes Girlie, I read that he is in Washington and accepting patients. I had never heard of him before but I do not take the Charlotte paper. I am out in the country with all the ticks! I am watching Under Our Skin in which he makes an appearance. It is just so hard to get in and out of DC and NYC for that matter. I have never found a dogsitter that I feel good about so the dogs go with me in my camper van. We went to Utah last year but I noticed some physical problems that do not come up at home. Anyway, DC is not out of the question but would take a lot of planning. It would be easier to move to DC, next door to the clinic, which I would consider after watching the first half of Under Our Skin. I had no idea that Lyme Disease could take such a toll on a life. It breaks my heart to see young people and children with such suffering. I am old and have had a life so it is different.
To Walking By Faith. Yes I think I have mold, actually in my air vents and turned off the HVAC system even before I was tested because of the fungal sinus. I do not want to jinx anything so I will speak of the moving solution when I am sure. I will prob need advice. I have figured out that new construction is safest although lumber can have mold, while lying around, it is unlikely in air vents. I am in correspondence with May Dooley http://createyourhealthyhome.com/. She tells you how to check for mold. You need to buy a microscope, but it is much more dependable than the mold company cowboys, in Charlotte anyway. They only use a few samples. May uses 25 or more and brings her microscope. She is in Pa, but I have sent her some photos. Amazon has some microscopes that connect to your computer. On a Mac, using Photobooth I can take a photo. But Photobooth's resolution is not very good and May did not think my samples looked like mold. I just sent her some more along with professional Google photos of aspergillus and penicillium which I thought resembled my air duct samples and am waiting to hear. She is a scientist and has a professional microscope so I think that might be the problem. I am not against a mold tester and will probably call one if May does not identify mold. I do not "want" mold. I just have had basement flooding and various leaks over the years so that I am convinced there is mold here and that it has something to do with my fungal sinusitis. One of the most amazing things to me is after everything I have read about fungal sinusitis on medical websites, no one is suggesting that people who are afflicted should check for mold at home. They are doing these major surgeries, scraping the sinus out and cutting away, then sending people home without a thought about house mold. Aspergillus and all fungi are in the air is repeated over and over, but nothing about the mold that grows inside the wall next to the bed where we sleep at night. Oh and pillows! I read that pillows often have mold
There are two Chapel Hill LLMDs. Haven's website sounds like she avoids prescription meds. I do myself except right now I am scared because my bull's eye rash was in 2005 and I am 68. I think that I need aggressive treatment. I have read of some spirochette killing protocols using Royal Jelly, coconut oil and a few substances that can be ordered, but I am not sure about Rath. He has studies that he says 30-50% of the spirochettes die in vitro when this combo is introduced. But she does not say anything about her protocols. Anyway, YES I was impressed by Haven's (not her name) attention to mold, but I did not read anything about fungus. Mold pretty much equals fungus but getting them out of the body is different than getting them out of a house. Other than an endoscopic surgery, the reported success has been with a newer drug Amphotericin B.
I will visit her website again. Right now I think I just need an LLMD that knows there is such a thing as fungal sinusitis, that it is not rare and that this information has been known and disseminated by the MAYO Clinic since 1999. Another follow-up study also found fungus in all sinusitis, whether or not the bacterial component was the major contributor. Since I now have an excuse for my, at times, odd conclusions, I will not be offended at all if this plan does not make sense. I am just so grateful for any help and discussion. I have felt very alone.
I have left a message with the other Chapel Hill LLMD for now. I read about one of her patients who was taking antibiotics and supplements longterm so she is using meds and hopefully would be open to discussing the best route since the Lyme is primary but the fungal sinusitis is overwhelming. I have to put cotton balls in my nose for stoppers when I go anywhere or do anything like vacuum when my hands are not free to grab kleenex. It eases up late at night for some reason.