SFC/EM Investigación

Hi, I tested positive for lyme, bartonella, erlichia, chlamydia pneumonia and mycoplasma pneumonia.
I was diagnosed with CFS in 1989 and diagnosed with lyme and all the other stuff in 2008.
The tests I did were all the Infectolab ones

I've tested positive for Lyme via Elispot-LTT, and I also have ICC/CCC ME with PEM.

I have a diagnosis of M.E I meet the CCC and ICC criteria. I was recently diagnosed with Bartonella Henselae (1/64 low titres IgG) By RED labs in Belgium. Chlamydia Pneumoniae Redlabs, serology positive IgG.

Negative by Infectolab Germany Elispot LTT for Lyme (result was 1,1,1.) BUT my doctor thinks I DO have Lyme disease as he says my immune markers and clinical symptoms point to it, and the other infections I have are common co infections with Lyme. My immune system is not working well, and if I have Lyme it will have been for a pretty long time, so it may be hiding. He will re test at another point with 4 tubes, rather than 3.

Hi Sergio, I'll post my info here. Please copy and paste it where you need it and feel free to edit it. I first became ill in 1993 with a throat infection which was eventually diagnosed as EBV. Never recovered and became much sicker. I was diagnosed with ME about six months later. I was bed-bound for about 18 months and then more or less housebound for 18 months. Then began functioning at around 60%. This lasted for many many years, waxing and waning, with a compromised immune system and all the usual ME symptoms and complications. Most notable of these was a dislocated pelvis in childbirth (diastasis symphisis pubis, which kdm attributes to ligament laxity), compounded by picking up a hospital bug (psuedomonas infection) also in childbirth. I could go on.... I became pre-maturely peri-menopausal in my early 40's and my condition deteriorated rapidly. I was on a downward spiral and my condition became significantly much more "neurological" rather than "immunocompromised" as it had been before. I was diagnosed with Lyme in April 2012 by PCR, confirmed by DNA sequencing. So far, apart from kdm's usual protocol I have had 4 weeks of IV Ceftriaxone; 8 months of oral abx (doxycycline, plaquenil and azithromycin) and also 5 months of herbals. Now I am about to complete 12 weeks of IV azithromycin and Rocephine. I am happy to report that my CD57 has gone from 29 (range 60-360) in November 2010 to 87 (same range) in August 2014. I think I'm on the right track! It is important to note that my husband and two teenage sons also tested positive for Lyme.

As you know, its complicated. A year before I was diagnosed with Lyme, my eldest son James was diagnosed with a very large and very calcified brain tumor, located mid-brain. It was a mixed low-grade (grade 1 & 2) astrocytoma glioma. He had 9hr surgery and they managed to remove 60-70%. The rest is stable and is regularly monitored by MRI. When I was diagnosed with Lyme, I immediately made sure that all my family were tested too. James tested negative by PCR but our doctor was convinced that he was positive and kept re-testing him until finally he tested positive by LTT-Elispot. Our doctor is also convinced he has Bartonella due to very clear and distinctive stretch marks on his back and abdomen. He is being treated for both Borrelia and Bartonella. Prior to the diagnosis of the brain tumor, James was a normal healthy child, with no medical problems at all. I would say that his Borrelia symptoms are also very minor but given his medical history we are taking no chances. His younger brother Julian is far more symptomatic of Lyme and he tested positive by PCR, confirmed by DNA sequencing, the first time he was tested. Again, Julian was a healthy child until about 3 years ago when he started displaying abnormal levels of fatigue. He was never diagnosed with ME or CFS. However, our doctor has told us that Julian's immunological profile is a carbon-copy of my own, just at a much earlier stage. So we're very glad that he is getting the treatment. The only abnormality Julian had is that he was diagnosed with a learning disability (dyspraxia) aged 8yrs. Our doctor strongly believes that there is a correlation between the neurological damage caused by Lyme and learning disabilities in young children. Finally, my husband tested positive for Lyme by LTT-Elispot. Also, 3yrs ago, he had a very large and spontaneous subdural hematoma which required brain surgery. Fortunately he had no lasting defecit. He had no history of ME or CFS.

I met the Canadian criteria for cfs. Also had receivec a fibromyalgia dx in 2012?. In my heart I did not feel those 'diagnosis' explained what was causing all the symptoms but after ten years I was desparate for a diagnosis that might give me some direction to regain my health, life.

Since 2004 I had two ELISA tests that I wax told were negative so no further testing was done. Late 2013 my gp ordered a test I was not familiar with, CD57. I was shocked to find out it was a possible screen for lyme, see my gp was adamant that I could not possibly have lyme, something else must be causing my symptoms so I was confused why this test was ordered. I thought Lyme had been removed from the list of suspects.

After years of blood tests being mostly normal, yet me being very ill, the Cd57 came back very low (55). That was enough for gp to approve western blot, so I researched and decided on Igenex. My Igenex came back 'negative' BUT as Igenex result put in large print, Negative does not mean Negative but gp just saw the word NEGATIVE. it would have been dropped again had I not pushed the issue and asked the gp to review my case with lyme literate doctor. Once gp reviewed test results, symptoms and treatment history GP changed opinion and agreed with llmd that there was a strong possibility of lyme. See even though my Igenex was CDC Negative I did have reaction to some lyme specific bands (3 INDs and a couple +s). That result plus my symps apparently enough for llmd to suspect lyme.

I finally got in to see that lyme dr 3 months later and further testing was done for lyme and coinfections. At this time I only came back positive for anaplasma/erhlichia and mycoplasma. She also suspects bartonella and borellia but current tests are negative, llmd explained that may change to positive once my immune system starts working again.

so positive for 2 TBI but getting treated for these and since there is overlap in same treatment used for lyme and bartonella getting treated for lyme and bart because same drugs used and she suspects based on symptoms.

I have been in treatment now 4 months and I believe finally after ten years of misery I am seeing improvement in some symps. However the wax and wane experience I have had over the years makes me skeptical and need more time and continued improvement to be certain of the treatment and diagnosis. I just noticed this week a big improvement in my opinion. I had rashes that would flare up regularly on fingers, hands, elbows, chest, torso, legs, behind knees. Also had small wounds in same areas that would nsver completely heal. As of this week I noticed these wounds are healing. They are leaving bad scars, not surprised, but they are definitely healing. I always felt my skin issues were an indication on the condition of my immune system. I have also not seen the rash flare ups that were fairly regular for many years. I may need a few more months though to be certain that symptom is also improving.

I still have othe symptoms but I feel slowly I am seeing some improvements with antibiotic treatment. My ibs has improved greatly( waterfall diarrhea everytime I ate, sorry if too much info but this was a debilitating symptom). The tingling, twitching, spasms have decreased. The pain has decreased. The internal vibrating has decreased. The heart palpitations and chest pressure sensation has decreased. I still get them, especially after exertion, but not constantly anymore. In spite of still having other symptoms I am finally encouraged that my health issues have been figured out.

I hope this info can help someone else not have to suffer the losses I have for ten years. It is criminal what is being done to chronically ill people, yhe lack of awareness, testing and proper treatment for lyme and coinfections.

Im now ecpecting to have continued improvement. Llmd thinks I could be about 80% functioning with 2 yrs of treatment. That will be an answer to prayer, I would be so happy with 80% functioning.

I look forward to seeing the statistics you are gathering

I am positive for Bartonella by PCR. My Igenex was equivocal and I was negative on the LTT--but I have low lymphocytes which may be a factor in getting a negative on the LTT.

I meet both the Canadian and the International criteria. I have been treating Bartonella with antibiotics and Cowden herbals (under a lyme literate M.D.) for 4 months and have some nice, but slow, improvements.

Sushi

i got lyme in 1987 while camping in a national forest in missouri. i was diagnosed in 2011 after 24 yrs of intense chronic illness and being told 1000 times that i was a hypochondriac. i found out i have borrelia, babesia, rickettsia, mycoplasma, chl. pneumonia, epstein barr, hashimotos thyroid diseas, and really awful mycotoxins/fungi/yeast in my blood.

CFS diagnosis yes. Elisa negative for lyme, western blot positive. other dx were positive mostly in blood panels: epst barr, myco, chl pneum, hashis and fungi. ART positive and muscle testing positive: babs & rickettsia

EndSFC escribió:Ya... Sí, ojalá... pero si ya está costando que la gente se aclare (pues les remito a un foro en Español y han de fiarse de lo que pongo, y además con el Brain fog y el cansancio (etc.!)

EndSFC escribió:No podemos esperar a que alguien algún día publique algo sobre esta relación... Especialmente cuando las pruebas y el tratamiento YA existen...

EndSFC escribió:¿Serías tan amable de contarnos tu caso?