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My friends, I think it is time to reach out to our other “family members”. Folks with chronic Lyme disease deal with many of the same issues that POTS, MS, chronic fatigue and fibromyalgia deal with (specifically the brain fog and fatigue come to mind). Why don’t we see what we have in common (with our blood work, etc.) to see if we can figure out the connection. Whose with me? 🙂 Does anyone know of someone with Lyme dz? Please invite them in! Meanwhile, I’ll be interested in learning everyones’ TNF-alpha, IL-1, and INF-y numbers, if you have them (cytokines). Thank you, everyone!
Hi, Great to be here… Diagnosed Chronic Lyme for the past decade,, Had been tested and treated for CCSVI.. Doing better.. Doc is correct.. The overlap in symptoms of all these neurological diagnoses leads me to beleive we all may have the same or very similar condition.. Much more imput is needed!!! Thanks for this!!
Hi, I have been suffering from chronic Lyme for twenty years now. I believe there is a strong connection between Lyme, MS, Fibro, Parkinsons, Alzheimers, CCSVI. POTS is just a symptom we all have. I am surprised Drs don’t more notice that we all have such similar rotating and migrating symptoms?
In Medicine, Doctors are tained when they hear huff prints, think horses not zebras.. They know only what they are taught many times, few go outside of the box as they fear their medical boards.. But, good news,, the patients educating themselves will be what makes the change in all of this..
Hi Guys! OK, are you ready to figure this out? I have a strong suspicion about what is happening (and what may help correct this). Would you be able to send me a copy of your labs that indicate your diagnosis? Feel free to send me a PM, or you can use the contact page to email it to me. I will keep it completely confidential. If I’m right, our labwork should show the similarities, and I will keep you posted on what I’m finding. How does that sound? Thanks so much! 🙂
That sounds good Dr Diana. I will forward that to you. Soon I will have dna testing on the spirochetes I have that I will forward to you also. Do you want all lyme related, or do you want some random blood tests too? This will be really interesting to see the comparisons.
I have a clinical diagnosis of Lyme, Babesia and Bartonella. Labs do not show it, but I have not gone through IgeneX. The Lyme itself hasn’t been active since Oct of last year, the babs comes and goes and the bartonella has shown up only recently (knew it for over a year). Have labs VERY positive for chronic active HHV-6, Coxsackie A, EBV and a lab indicating past or weakly current infection of mycoplasma pneumoniae. My CD-57 is very low (CD-57 has been used to track Lyme recovery status but other infections like HHV-6 and mycoplasma also lower it) and I have labs showing my genetic susceptibilities (Shoemaker’s research), C3a and C4a and TGF beta 1. My Sed Rate was normal only a 1, so I’m waiting for result on CRP and will have mold antibodies drawn next, considering my moldy living situation. Don’t have labs for TNF, IL-1 or that, but will be glad to send you what results I do have. Can they be sent by email? or fax? I have joint pain everywhere, CFS, MCS, POTS, and definitely JHS if not a type of EDS. Thanks! 🙂 KC
That sounds good Dr Diana. I will forward that to you. Soon I will have dna testing on the spirochetes I have that I will forward to you also. Do you want all lyme related, or do you want some random blood tests too? This will be really interesting to see the comparisons.
I’ll be happy with whatever you can share! 🙂 Feel free to email it (you can use the contact me portion of my website), or if you need snail mail, please shoot me a PM and I’ll get that to you, OK?
Thanks so much!
🙂I have a clinical diagnosis of Lyme, Babesia and Bartonella. Labs do not show it, but I have not gone through IgeneX. The Lyme itself hasn’t been active since Oct of last year, the babs comes and goes and the bartonella has shown up only recently (knew it for over a year). Have labs VERY positive for chronic active HHV-6, Coxsackie A, EBV and a lab indicating past or weakly current infection of mycoplasma pneumoniae. My CD-57 is very low (CD-57 has been used to track Lyme recovery status but other infections like HHV-6 and mycoplasma also lower it) and I have labs showing my genetic susceptibilities (Shoemaker’s research), C3a and C4a and TGF beta 1. My Sed Rate was normal only a 1, so I’m waiting for result on CRP and will have mold antibodies drawn next, considering my moldy living situation. Don’t have labs for TNF, IL-1 or that, but will be glad to send you what results I do have. Can they be sent by email? or fax? I have joint pain everywhere, CFS, MCS, POTS, and definitely JHS if not a type of EDS. Thanks! 🙂 KC
See? We’re getting somewhere already. Many of us with EDS have very low CD-57 panels… Feel free to send me what you have via my contact page on the website, if possible. Cool? big hug…
Dr Diana, I believe I sent you a bunch of my labs just after I posted it. LOL was typing away for an hour or two… Hope it went through!! Thanks 🙂 Cool to see that EDSers have low CD-57.
Very excited to find this forum!
I have Hashimoto’s, Hypermobility (no real diagnosis, mentioned in passing by a NL, am super bendy also have hyper-reflexia), CCSVI without reflux but with reduction in flow both sides, severe vitamin D deficiency and the latest is possible chronic Lyme, mostly based on a clinical diagnosis – low CD57 and past history of a tick bite but no fevers/rashes/joint pain so I’m currently deciding if I want to start treatment.
About to start the FODMAP diet for IBS as well – I’m a barrell of fun!!
I’m so happy to be amongst ‘my kind’ here! I’ve been online for 3 years trying to figure it all out and I finally feel like I’m making some headway here.
CB. x
Very excited to find this forum!
I have Hashimoto’s, Hypermobility (no real diagnosis, mentioned in passing by a NL, am super bendy also have hyper-reflexia), CCSVI without reflux but with reduction in flow both sides, severe vitamin D deficiency and the latest is possible chronic Lyme, mostly based on a clinical diagnosis – low CD57 and past history of a tick bite but no fevers/rashes/joint pain so I’m currently deciding if I want to start treatment.
About to start the FODMAP diet for IBS as well – I’m a barrell of fun!!
I’m so happy to be amongst ‘my kind’ here! I’ve been online for 3 years trying to figure it all out and I finally feel like I’m making some headway here.
CB. x
Hi Chicken Boo (love the name!) – did you know that Hashimoto’s is very common in EDS? Hmmm. Oh, as is hyperreflexia (expecially below the waist), CCSVI, Vit D deficiency… Interesting, huh? I was tested no less than 4 times for lyme! Do you know what your TNF-alpha, IL-1 and IL-6 readings are? We’re comparing notes! Thank you, and WELCOME to the party! 🙂
Hi Chicken Boo (love the name!) – did you know that Hashimoto’s is very common in EDS? Hmmm. Oh, as is hyperreflexia (expecially below the waist), CCSVI, Vit D deficiency… Interesting, huh? I was tested no less than 4 times for lyme! Do you know what your TNF-alpha, IL-1 and IL-6 readings are? We’re comparing notes! Thank you, and WELCOME to the party! 🙂
I have hyperreflexia all over! I’ve always had VERY responsive knee reflexes but my arms do it too, been that way since I was a kid.
I’m not sure if I have those measurements you’ve mentioned in my test results, I will double check but they are not terms I am familiar with.
So, are you thinking people with EDS have naturally lower CD57 scores? Meaning a misdiagnosis of Lyme or that we’re more prone to picking up bacterial infections/not being able to deal with them ourselves? Interesting either way!
MY LLMD explained to me that having a form of EDS means I am more likely to have IBS, which I do so put me on the FODMAP diet which is wroking quite well for me at the moment. She also explained that might mean I was more likely to suffer from Lyme disease than other ‘healthier’ people – what do you think?
Oh, also forgot to mention I had glandular fever too when I was 14/15 – lots of my Hashimoto’s friends have had it too. Might be of note.
I’m confused… where are these tests results found that you are looking for Dr. Diana? I was tested through Igenix for Lymes, but don’t see any of those tests mentioned on that report. Help!
Sorry, should have added this before I sent the above post….
One of the weird things I have in my blood that my doctor hasn’t been able to figure out, is that I have high CIC’s (circulating immune complex’s). Specifically, CIQ Binding Assay and Raji Cell Immune Complex Assay.
For several years when he used his standard lab to run the Western Blot for Lymes the IGG part could not be processed due to “unknown interference”. After running this twice, about 2 years apart, then we did the Igenix testing. My doctor has speculated that my CIC’s might be what interfere with the testing. Anyone else have this happen?
I also have a weak immune system, seem to catch everything, even really weird stuff that has only been found with blood tests (like H.Pylori, C. Diff, Amoeba Hyst., etc.). Always, always have very high EBV antibodies.
Okay, I just found one of my labs that does have some of those tests mentioned above. This is from a Flow Cytometry, Lymphocyte Immunodef panel (?). I only see the CD56 test, not the others. Is there maybe another name for them?
2/2011
Nk(CD56)% 6.3 (ref range 3-18)
Nk(CD56)# 115 (ref range 40-500)Also on this test my T Helper (CD4) % and # are below the ref range.
Is this of any help Dr. Diana?
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