Two months and still no answers

[iiaudio]

I wanted to see if any of you have any suggestions of additional steps I should take, or any diagnostic thoughts.

I got sick for the first time on Tuesday, September 28th. At dinner, all of a sudden, a wave of feeling terrible just came on me. I then proceeded into swings of severe to-the-bone-chills, then into profuse sweating -- back and forth and extreme fatigue.

The next day I went to a walk-in clinic (I was out of town working). They ran no tests, but said it was probably strep (though I had no throat issues or other symptoms), and they put me on a round of penicillin. That Saturday, I was worse, and went to the ER, who ran no tests, but increased my dosage of penicillin.

The following Wednesday (10/6), back in home, I went to a walk-in clinic, they ran tests for a number of things -- strep, pneumonia, mono, etc -- and put me on a Z-pack. All tests came back negative and the mono test came back staying that I had mono in the past. All blood work normal.

The following night, I suddenly felt much better, amazingly. I continued to feel pretty good through that weekend (my wedding weekend, thankfully!). And then we drove to NY state for our honeymoon. That Wednesday night, I took a sudden a severe turn back to where I started -- if not worse. I then proceeded to sweat and have chills for the next 18+ hours, had no appetite, couldn't sleep, and was freezing half the time. My temperature ranged between 95.5 and 98.

The next day (10/14), I went to a walk-in clinic up there at the local hospital. Over the course of the next week and a half, through multiple visits, they got the previous clinics records, and started testing me (or re-testing me) for a wide number of things -- increasing in severity &/or obscureness with each round of tests. I was tested for strep (a couple of different types of tests), Tuberculosis, Lyme Disease, West Nile, prostate issues, various STD's including HIV, Malaria, and others I surely can't think of. My blood was sent away for cultures. All cell counts, tests, & labs came back normal. During that time, they also put me on another Z-pack which did nothing, then they put me on Doxycycline.

Also in this period (10/20-21), I went to visit my uncle who is a radiologist. He hooked me up with a buddy who's a great internist -- whose wife is an infectious disease specialist. The internist did an extensive exam, and except for some nasal stuffiness & possible sleep apnea, he found no issues. He talked to his wife too, who saw no red flags. Then he & my uncle sent me in for a chest abdomin and pelvis CT scan. All normal -- and no lymphoma.

I began to feel better again on October 22nd, and continued to feel pretty good until the afternoon of 10/26, when I took another downturn -- though not as severe as the first two rounds. Since the 26th, I've steadily just felt not great, with inconsistent cycles of sweats taking over every day or two, which brings on a lot of fatigue.

I went to my walk-in doc back home (for lack of a primary care) when I came back (~10/27), who ran a couple more tests (CMV?). Which came back negative. Then after another week with no improvement, I went back again today. That doctor consulted with the head of infectious diseases at a local hospital, who basically said that if I still have symptoms in a month that he would see him then. I've also started having slight “pins and needles” feelings randomly over my body the past week.

Honestly, I'm terrified that this is something terminal that just hasn't been diagnosed yet. And of course, I'm all hoping it's just a virus that doesn't want to go away -- but will any day now! I hope.

Any thoughts would be appreciated. Thanks in advance.

[iiaudio]

Went to a new Doc last week. He did a few more tests and I'm just waiting for the results. The sweating and the chills have been less severe and not as frequent the last few weeks (keeping my fingers crossed), but the fatigue is still there.

[ewford]

If your issues are all over your body, joint pain, muscle pain, headaches, general unwell feeling, neuropathy, skin issues, sinus, feeling like you are going crazy, etc and all tests are normal you might consider being tested for Lymes with a PROPER LAB.  Labcorp and Quest Lymes tests are terrible.  They omit 2 very specific bands of genetic information that lead to a proper diagnosis.  You need to contact ILADS (international Lyme and associated diseases) and find the closest Lyme dr who knows how to treat this.  

Usually Lyme has other co-infections such as Mycoplasma Fermentans Incognitus.  You will never test positive for this since there is basically only one lab that has this specific test.  It is VIPDX in Nevada.  70% of Lyme patients have this co-infection.  Go to www.immed.org to get further information on chronic autoimmune illness.  You CAN be cured with low dose/long term antibiotic treatments.

The problem with lyme and the Lyme spirochete is it is VERY well adapted at fooling your immune system.  The Mycoplasma is VERY nasty. It is an INTRACELLULAR infection, hence it wont be picked up on reg tests because it is INSIDE your cells, not flowing in the bloodstream.  Mycoplasma F can be found in sperm, vag fluids, in utero, mothers milk, droplets from cough, etc. This is the next STD that the goverment is denying exists.

If you need more info, PM me and I will try to help you with any questions.  BTW, NO regular dr is gonna figure this out.  You need to see a Lyme specialist.  They see this all the time.  But the mainstream dr's have no clue and will ony prescribe broad spectrum antibiotics that damage the cell wall.  You have to use a dna disrupting antiB ie Minycycline or clindomyacin or Azithromyacin.

youtube and search the movie "under our skin" to see if you fit into this catagory.