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Posted 2/1/2017 7:16 PM (GMT 0)
Hi everyone. Just wanted to say hi here as its nice to be around fellow sufferers. I signed up to a load of lyme boards when I got my lab test results back and this appears to be by far the most active.

I don't have much to share at this stage because I only found out a few weeks ago I had lyme. I'm still waiting for a formal diagnosis from a western medical doctor. I went to a well known german lab (rules here don't allow me to post the name of it I don't think), and the results below are what came back.

I know you guys have your own problems and I am asking a lot for all this to be read through but please if you can afford a few minutes I would most appreciate any feedback on this data no matter how obvious and unnecessary you might think to mention.

I know the lab is good but they don't appear to want to deal with me personally, which I suppose is fair enough as I asked for these tests through a nutritionist.

I have many hundreds of hours of reading ahead of me but I will get there. The amount of information on this is truely overwhelming.

My wishes and strength to all of you

---------------------------------------

Here are my results:

CD3-/CD57+ Cells

3 CD3-/CD56+ Flow Cytometry
3 T cells CD3+ (%) + 82,05 % 62,00 - 80,00 [ ........ *>
3 T cells CD3+ (absolute) 1516 /ul 900 - 1900 [ ....*... ]
3 NK cells CD56+ CD3- (%) 10,27 % 6,00 - 29,00 [ .*...... ]
3 NK cells CD56+ CD3- (absolute) 190 /ul 60 - 700 [ .*...... ]
3 CD57+ NK-cells (%) 28,57 % 2,00 - 77,00 [ ..*..... ]
3 CD57+ NK-cells (absolute) - 54 /ul 100 - 360 <* ........ ]

The result of the CD57-cell count indicates chronic
immune-suppression, which can be caused by Borrelia
burgdorferi or other bacteria like Chlamydia pneumoniae or
Mycoplasma pneumoniae.

---------------------------------------


Heamatology

3 Blood count~
3 Leucocytes~ 6,87 Gpt/l 4,00 - 10,00 [ ...*.... ]
3 Erythrocytes~ 5,79 Tpt/l 4,50 - 5,80 [ .......* ]
3 Hemoglobin~ 17,3 g/dl 14,0 - 18,0 [ ......*. ]
3 Hematocrit~ 48,9 % 42,0 - 52,0 [ .....*.. ]
3 MCV~ 84 fl 82 - 98 [ .*...... ]
3 MCH~ 30 pg 27 - 31 [ ......*. ]
3 MCHC~ 35 g/dl 32 - 36 [ ......*. ]
3 Thrombocytes~ 212 Gpt/l 140 - 400 [ ..*..... ]
3 Differential Blood count~
3 Neutroph. Granulocytes~ 62,20 % 40,00 - 75,00 [ .....*.. ]
3 Lymphocytes~ 26,90 % 17,00 - 47,00 [ ..*..... ]
3 Monocytes~ 6,00 % 4,00 - 12,00 [ ..*..... ]
3 Eosin. Granulocytes~ 2,80 % < 7,00 [ ...*.... ]
3 Basoph. Granulocytes~ 1,20 % < 1,50 [ ......*. ]
3 Others~ 0,90 %

-------------------------------------------
ELISPOT

1 Borrelia b. Full Antigen ! 2 SI
0-1 = negative
2-3 = weak positive
> 3 = positive
1 Borrelia b. OSP-Mix ! 6 SI
0-1 = negative
2-3 = weak positive
> 3 = positive
1 Borrelia burgdorferi LFA-1 0 SI
0-1 = negative
2-3 = weak positive
> 3 = positive

--------------------------------------

Borrelia IgG-/IgM-SeraSpot®
4 Borr. burgdorferi SeraSpot IgG negative negative
4 Borr. SeraSpot VlsE (afzelii) negative negative
4 Borr. SeraSpot p39 (afzelii) negative negative
4 Borr. SeraSpot p58 (garinii) negative negative
4 Borr. SeraSpot p100 (garinii) negative negative
4 Borr. SeraSpot OspC (afzelii) negative negative
4 Borr. SeraSpot OspC (garinii) negative negative
4 Borr. SeraSpot OspC (s.s.) negative negative
4 Borr. SeraSpot dbpA (afzelii) negative negative
4 Borr. SeraSpot dbpA (garinii) negative negative
4 Borr. SeraSpot dbpA (s.s.) negative negative
4 Borr. burgdorferi SeraSpot IgM negative negative
4 Borr. SeraSpot VlsE (afzelii) negative negative
4 Borr. SeraSpot p39 (afzelii) negative negative
4 Borr. SeraSpot p58 (garinii) negative negative
4 Borr. SeraSpot p100 (garinii) negative negative
4 Borr. SeraSpot OspC (afzelii) negative negative
4 Borr. SeraSpot OspC (garinii) negative negative
4 Borr. SeraSpot OspC (s.s.) negative negative
4 Borr. SeraSpot dbpA (afzelii) negative negative
4 Borr. SeraSpot dbpA (garinii) negative negative
4 Borr. SeraSpot dbpA (s.s.) negative negative
The specific Borrelia burgdorferi-IgG/IgM-antibodies by
SeraSpot (modern Borrelia Westernblot) indicate no humoral
immune response against Borrelia burgdorferi.
Please look at the Borrelia-EliSpot and the CD57-positive
NK-cells. Take into consideration the clinical symptoms and
the differential diagnosis (co-infections).
Posted 2/1/2017 7:47 PM (GMT 0)
Hello, munkra - welcome to our community!

I will take a look at the test results and see if I can be of some help...just wanted to quickly welcome you here first.
Posted 2/1/2017 7:55 PM (GMT 0)
Hi, welcome to our community!

Please read the topic New To Lyme?.......Start here! - full of useful info

You CD57 is low, which shows your immune system is compromised.
Elispot shows Borrelia infection.
Western Blot is negative, but it means that there are no antibodies, which can be because of the compromised immune system.
I recommend that you find a LLMD and start the treatment. You can choose abx or herbs route.
What are your symptoms? When did they start?
Posted 2/1/2017 7:56 PM (GMT 0)
Well, your NK cells are low...that is a sign that immune suppression.


You have a couple indicators that you have lyme:
On the Elispot:

Borrelia B.Full antigen- 'weak' positive.

Borrelia b. OSP-Mix - you are positive (You have 6 when anything over 3 is a + )


You didn't show any bands + on the Sera- Spot, though.

I'm assuming you have symptoms consistent with lyme disease - which instigated you getting tested.
With this information, I am glad you have an appointment with a Dr. - but is he a Lyme Literate Dr.? This is really important. If he isn't, I suggest you rethink and find a LLMD for a folllow-up of these test results...and an evaluation.
Remember: Lyme Disease is a clinical diagnosis..with testing used as a back-up.

We encourage all new members to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 2/1/2017 9:01 PM (GMT 0)
Thanks everyone. I am in the UK and the health service here barely acknowledges lyme at all. I had to pay for the lab test privately because the GP was in bisbelief it could be anything like lyme and refused to run a test. In a way I'm glad because I read somewhere they don't test for it properly anyway. I think they use just the western blot which would have shown all negative and wasted more of my time.

My symptoms are numerous: constant headaches, fatigue, memory problems, skin rashes, digestive issues, weird pains and numbness in parts of my body. I recently found out my FSH (follicule stimulating hormone) was 1.4. I am having an MRI brain scan soon as the endcrinologist could not account for the low reading. I suspect they will find problems either with my pituitary or hypothalamus; I reckon hypothalamus has been damaged in some way from lyme activity. I hope this is a sufficient explanation because I'd rather avoid talking at length about all my bodies idiosyncrasies at the moment, it just depresses me.

I'm not sure how you guys coped when you found out you had lyme? For me it was a mixture of relief, panic, anger and depression. It did affirm a lot of what I already knew deep down, just living my life as me. It's been difficult in so many ways. I'm in a positive frame of mind and being around positive people helps.

My nutritionist is devising me a herbal protocol at the moment. It's difficult to know which way to proceed. I read a thread about pulse loading Minocycline & Tinidazole on lymesneteurope, and was thinking about purchasing both these abx online together with the herbal protcol from the nutritionst. I'm a little worried about the herx reaction, and there is a risk the abx will be fake. It's highly likely all the health service has to offer here is doxycycline, even with chronic lyme, so I'm not holding out hope.

Thanks for reading and I look forward to getting to know all of you in the future
Posted 2/1/2017 9:19 PM (GMT 0)
How did I cope with the diagnosis? I cried tears of relief.

I had been sick for 15 months...with many symptoms...and I was sent to numerous Docs to have MS, ALS, Parkinson's disease ruled out..

I was happy to have 'something' that could be treated...

But, my optimism waxes and wanes...as I initially thought I would be completely better within a year....sigh.

I have some information - places in the UK you could look into for treatment if you're interested.

If you are going to self-treat...please educate yourself. You can also subscribe to a LLMD's online treatment book. He lists many protocols on there.

it's something like $4.99 per month.

www.treatlyme.net

You will want to start detoxing your body right away...in preparation for treatment.
This will help with herxing.
Posted 2/1/2017 10:33 PM (GMT 0)
Hi Munkra,

You've not only found the most active Lyme board you have now signed on with the best. I've learned more from members here than any other forum. Heck these members are even capable to inspire you at any time. Anything you gain, just pay it forward because that is how we roll around here. Cheers and Welcome.
Posted 2/1/2017 11:28 PM (GMT 0)
Welcome and I'm so sorry that you had to find us. But now that you're here, you have a great group of people who offer kindness, support, and of course their knowledge and experience.

If you are going to do abx, please be under the care of doctor or a practitioner that at least understands the abx. There are self-treaters on this website, but mainly in the context of herbs which also can be as strong as abx.

Again, welcome!
Posted 2/2/2017 12:15 AM (GMT 0)
Welcome. I'm sorry your here to begin with, this crap sucks. That said, there is a wealth of information and helpful caring people here. I find just coming here and reading stories helps me cope. Not that I'm glad other people have it, just glad to know Im not alone- as it can often feel that way. I wish you luck in your journey
Posted 2/2/2017 12:18 AM (GMT 0)
Lol I like how it replaced what I actually typed (with an *, I'm not a complete heathen) with crap
Posted 2/2/2017 12:31 AM (GMT 0)
Welcome ..the osp level is definitely positive ...congratuladolences ...i too cried like girlie ...i thought i was a goner ..still not sure ..
consider bvt and rife and herbal adjucts ..most docs are cluesless..
Posted 2/2/2017 12:43 AM (GMT 0)
Welcome to the forum Munkra,
I have found this to be a place of invaluable information and great compassion for others. I wish you the best in your journey to getting healthier. Stay positive, and remember to have faith and hope that you will heal. Sincerely, Jo
Posted 2/2/2017 12:49 AM (GMT 0)
Munkra, welcome!

Is there any possibility you could hope over to Germany for treatment? I have a good list of LLMD's over there.

I don't think you're going to find much help in the UK with the NHS. They seem to be pretty stuck on our CDC limited standards.

Anyway, if you're interested shoot me an email.
Posted 2/2/2017 1:01 AM (GMT 0)
Hi Munkra!
Welcome to our community! I'm so glad you found us!

It seems that there have been plenty of explanation of what you have posted already, so I just wanted to stop by and say, welcome!! We're glad you're here!

Keep asking questions!! The learning curve once you have these infections, that leaning on those that have been through much of this can be a huge help. And, we like to help where & when we can. smile

I did cry when I was told I had Lyme too - but then felt panic when the LLMD told me I likely had all the tick-borne infections due to the severity and number of symptoms I had. But, I did heal, so keep your hope alive!! Unfortunately, I also got reinfected, so I'm back in treatment again. At least I'm surrounded by the good people here, though. smile
Posted 2/3/2017 11:32 AM (GMT 0)
Thanks everyone. Hope you guys don't mind if I don't post-quote individually as I don't know enough to talk at length about anything in particular and I feel pretty awkward. I'm jotting down a few bullet points here as to what I've planned next.
............................................................................

Immediate concerns

1) my nutritionist is formulating a herbal protocol which I'm waiting on. She wanted a few questionnaires filled out; a co-infection questionnaires and horowitz questionnaire. I suspect she is using this to determine dosages etc

2) I'm going to avoid abx until the infectious diseases doctor interprets the lab results as people suggested. Appointment week after next. I'm quite expecting to be turned away with no help which I'm prepared for.

3) I'm going to post the exact protocol the nutritionist comes up with on here for critique

..............................................................................

What I want to achieve?

1) cure my genital lichen sclerosus which I believe is linked directly to lyme. It's a rash on my foreskin which prevents easy contraction; I want to cure this skin disorder

2) dehydration and dry skin, mostly on my lips (chelitis) this makes it very difficult for me to function day-to-day as my lips dry out so badly, crack and peel.

3) fatigue - I want to feel consistently ok. I hate living with the drunk tiredness feeling where my words are slurred etc and my memory malfunctions.

4) get back into employment. I don't feel well enough at the moment to work.

5) get back into exercise routinely

6) get my hormone imbalance corrected; this will involve increasing my FSH to normal levels

7) get my CD57 into normal range

...............................................................................

Considerations:

may change to an LLMD as recommended here (will be PMing some of you).

may change to a herbalist instead of a nutrtionist.

may be worth being tested for co-infections as the lab suggests
...............................................................................

What I need to improve:

More research into lyme and co-infections

More research into functional medicine

---------------------------------------------------------------

Thanks again guys and I look forward to contributing in a meaningful way at some point to help others. Thank god for this place and for the internet.
Posted 2/3/2017 5:45 PM (GMT 0)
Only talk to us as you feel comfortable, Munkra!

Seems you've got this pretty well under control right now, since you have planned out a clear course of concerns to address!

Just let us know how we can be of help! I'm sure that you will begin to feel more comfortable commenting and helping others soon enough.
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