Lyme Nightmare

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L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/16/2018 4:52 AM (GMT -6)   
Hello everyone,

Firstly, sorry for my english - it is not perfect. I am from Bulgaria.

I am reading this forum from few days and you are all amazing. I regret that i found this forum so lately in my life.

I guess my storry is similar like all of yours.
The nightmare started around 6 years ago with pain in my shoulder. After a few months in the other shoulder, then the neck hip joints and at the end after few years - almost in every point in my body. I happend like this - firstly, when a new pain appeared it was very strong for around a month, then the pain was getting little better never dissapearing after that and new and new pain spot appeared.

If you think you dont have good medical specialiast in your country - well come here to see! Noene had the idea i had lyme for around 4 years. My family didnt believe me and think that i am hypochondriac.
My girlfriend also didn't believe me. The doctors told me i am crazy and overreacting. The pain was just incredible strong and all over my body. I am sure some of you can understand what i mean. I was so depressed and it was getting worse and worse. And the worst was that i didnt know what my problem is so many years. I had to go to work with extreme pain everyday and acting like everything is normal. I had something like pain cryses - felt like cancer in my bones.

After few years I met a doctor who made me tests for lyme. It was positiv. BUT he gave me doxy only 10 days.... After that the results were negative but my condition was not getting better.

Years after that my mother met me with a friend of her who is from Germany and his son had the same symptoms like mine and diagnozed lyme.
So they contact me with a clinic in Germany and the results there were 100% positive that i have some kind of borreliosis and co infiction. The test were much more complicated that those in Bulgaria - CD 57, lyme spot and other. So it appears that those 10 days course of doxy only made the lyme more chronic and invisible for the standart test. Before i went to Germany, actually i felt a lot better. I had drink a lot of things before the antibiotics and dont know which one helped me - MMS, ANTI PARASITE HERBS AND so on.

Finding out that i am really ill from something was a big relief for me.

Unfortunately i drank antibiotics for around 8 months by protocols of that clinic but i am not feeling a lot of better - comared to 3 years ago it is much better but not cured yet. They didnt told me i must make diets.... i have red that in your forum - low gluten, sugar, dairy.

So now the DR. from Germany told me to make some genetic tests for borreliosis in other clininc and we are waithing for the results to decide how to continue. My results in his clinic were much better thatn in the begining - cd57 a lot better (but still low) now sighn of lyme spot. He told me he is not sure why i am not feeling better.

So this is my story. I am glad to find people who had struggled same problems. There was period that i thoughts i am alone in this worlds with sucha horrible pain. The important thing is i am feeling much better than 2, 3 years ago and know that i am ill not insane as they told me here in Bulgaria.
I am sorry that i learned that i must make diet so late...
Maybe if i made a diet + antibiotics and protocols i would be healed already.

Now i am trying to live a lot more healthy.

Drinking only destilated water and performing paul bragg starving. (what do you think about starving for health in our cases?) The ideas is to make my imune system much better and to get rid of the toxins.

Wish the best to all of you smile

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 2/16/2018 5:26 AM (GMT -6)   
Hi L. Botev and welcome to our community,

I am so glad that you have found us, but I am so very sorry that you are suffering with Lyme and co infections.

Many members will understand what you have been going through and are still facing.

You are not alone now and you have good people here to help with any questions and they will offer support when you are having a rough time.

We do encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has important information on detoxing, Lyme, symptoms, and more.

The important thing is to make sure and keep treating since you are still having symptoms.

As you said diet is important and some do paleo, gluten free and ketogenics.

Drinking water with lemon juice all day and taking Epsom salt baths is a good way to detox.

Other members will be along to chime in later.

Well its nice to meet you and I wish you the best of healing.

Take care, Jo

annamalm
New Member


Date Joined Feb 2018
Total Posts : 1
   Posted 2/16/2018 11:08 AM (GMT -6)   
Hello! This is so similar to me. Can i ask you if its dr Klemann you went to? Have to taken any tests now campared to before? Interesting if its decreased in the blood. Kindly, Anna

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/16/2018 12:08 PM (GMT -6)   
I cant tell the DR. because of the rules in the forum but i am making tests and protocols in the BCA clinic augsburg.
Firstly i was borderline of lymespot and others - and with very low cd 57 (negativ). After that the borelius, chlamydia and other were all negative and the cd 57 still low but little better. The DR. said i should feel better with raising cd 57 but i am not so now i will make ne genetic tests in other clinic - HLA-DR for borreliosis in Berlin.
I will be glad to post my results here if someone want to see them and say his opinion.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33842
   Posted 2/16/2018 1:02 PM (GMT -6)   
L Botev - first - welcome to our community.

I am glad you found us here.

My question is about co-infections. Were you treated for babesia and/or bartonella?
If not...that is definitely something to look into.
Lyme rarely travels alone...so you won't get better without addressing the coinfections.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/16/2018 2:02 PM (GMT -6)   
I will post my results until now so all you can see it and maybe a second opinion.

First test in Bulgaria:
Borrelia burgdorferi IgG 0,62 N <1.1
Borrelia burgdorferi IgM 2,66 N<1.1
after that 10 days doxy (which i think made it chronical) after that the same results were negative.

2 years after that: BCA LAB:
Borrelia burgdoferi antibodies
Borrelia-IgG (ELISA) 9.04 RU/ml < 16.00 <15,9=neg. 16-21,9=borderl. >22=pos.
Borrelia-IgM (ELISA) 13.10 RU/ml < 16.00 <15,9=neg. 16-21,9=borderl. >22=pos.
Borrelia antibodies not detected. No serological evidence for Borelia
infection.
Borrelia burgdoferi Blot
Borrelien Blot IgG negative
Blot IgG p18 negative
Blot IgG p19 negative
Blot IgG p20 negative
Blot IgG p21 negative
Blot IgG p58 negative
Blot IgG OspC negative
Blot IgG p39 negative
Blot IgG p41 positive
Blot IgG p83 negative
Blot IgG LBb negative
Blot IgG LBa negative
Blot IgG VlsE-Bg negative
Blot IgG VlsE-Bb negative
Blot IgG VlsE-Ba negative
Borrelien Blot IgM negative
Blot IgM OspC Bg negative
Blot IgM OspC Bb negative
Blot IgM OspC Ba negative
Blot IgM p39 negative
Blot IgM p41 negative
Blot IgM VlsE-Bb negative

LymeSpot revised
Borrelia burgd. fully antigen IF-G 1 SI < 2
Borrelia peptid mix IF-G 0 SI < 2
Borrelia LFA-1 IF-G 0 SI < 2
Borrelia IF-G review
The LymeSpot-revised Test does not indicate Interferon-gamma (IF-G) active T- Lymphocytes
against Borrelia.
Borr. burgd. fully antigen IL-2 1 SI < 2
Borrelia peptid mix IL-2 0 SI < 2
Borrelia LFA-1 IL-2 0 SI < 2
Borrelia IL-2 review
The LymeSpot-revised Test does not indicate Interleukin-2 (IL-2) active T- Lymphocytes against
Borrelia.
Chlamydia pneu. IF-G 0 SI < 2
Chlamydia pneu. IF-G review
The LymeSpot-revised Test does not indicate Interferon-gamma (IF-G) active T- Lymphocytes
against Chlamydia pneumoniae.
Chlamydia pneu. IL-2 0 SI < 2
Chlamydia pneu. IL-2 review
The LymeSpot-revised Test does not indicate Interleukin- 2 (IL-2) active T- Lymphocytes against
Chlamydia pneumoniae.
LymeSpot revised review
Borrelia
The negative or borderline result of both, IL-2 and Interferon-gamma production in the Elispot test method
indicates the absence or a weak response on the cellular level.
CD 57 Flow Cytometry
Natural Killer Cells Heparin - 4 % 6 - 29
Natural Killer Cells absolute 65 /µl 60 - 700
Heparin
CD-57 positive NK-Cells Heparin - 1 % 2 - 77
CD-57 positive NK-Cells absolute - 9 /µl 130 - 360
Heparin
Review CD 57
The CD57-cell-count indicate a immune-suppressive situation.
Anaplasma phagocytophilum Elispot
Ehrlichia Elispot 1 SI < 2
Yersinia Elispot
Yersinia Elispot + 3 SI < 2

2 MONTHS AFTER THAT:
LymeSpot revised
Borrelia burgd. fully antigen IF-G 2 + SI < 2
Borrelia peptid mix IF-G 2 + SI < 2
Borrelia LFA-1 IF-G 1 SI < 2
Borrelia IF-G review
The LymeSpot-revised Test indicates borderline Interferon-gamma (IF-G) active T- Lymphocytes
against Borrelia.
Borr. burgd. fully antigen IL-2 1 SI < 2
Borrelia peptid mix IL-2 0 SI < 2
Borrelia LFA-1 IL-2 0 SI < 2
Borrelia IL-2 review
The LymeSpot-revised Test does not indicate Interleukin-2 (IL-2) active T- Lymphocytes against
Borrelia.
Chlamydia pneu. IF-G 10 + SI < 2
Chlamydia pneu. IF-G review
The LymeSpot-revised Test indicates Interferon-gamma (IF-G) active T- Lymphocytes against
Chlamydia pneumoniae.
Chlamydia pneu. IL-2 1 SI < 2
CD 57 Flow Cytometry
Natural Killer Cells Heparin 11 % 6 - 29
Natural Killer Cells absolute 350 /µl 60 - 700
Heparin
CD-57 positive NK-Cells Heparin 4 % 2 - 77
CD-57 positive NK-Cells absolute 111 - /µl 130 - 360 (THIS IS - 111)
Heparin
Review CD 57
The CD57-cell-count indicates a borderline immune-suppressive situation
( borderline: 100/µl - 130/µl CD57 pos. NK-cells).

4 MONTHS AFTER THAT:

LymeSpot revised
Borrelia burgd. fully antigen IF-G 2 + SI < 2
Borrelia peptid mix IF-G 0 SI < 2
Borrelia LFA-1 IF-G 0 SI < 2
Borrelia IF-G review
The LymeSpot-revised Test indicates borderline Interferon-gamma (IF-G) active T- Lymphocytes
against Borrelia.
Borr. burgd. fully antigen IL-2 0 SI < 2
Borrelia peptid mix IL-2 0 SI < 2
Borrelia LFA-1 IL-2 1 SI < 2
Borrelia IL-2 review
The LymeSpot-revised Test does not indicate Interleukin-2 (IL-2) active T- Lymphocytes against
Borrelia.
Chlamydia pneu. IF-G 0 SI < 2
Chlamydia pneu. IF-G review
The LymeSpot-revised Test does not indicate Interferon-gamma (IF-G) active T- Lymphocytes
against Chlamydia pneumoniae.
Chlamydia pneu. IL-2 1 SI < 2
CD 57 Flow Cytometry
Natural Killer Cells Heparin 8 % 6 - 29
Natural Killer Cells absolute 257 /µl 60 - 700
Heparin
CD-57 positive NK-Cells Heparin 3 % 2 - 77
CD-57 positive NK-Cells absolute 91 - (AGAIN THIS IS - 91)/µl 130 - 360

I am not sure is this - the - is after the 91

2 MONTHS AFTER THAT:

LymeSpot revised
Borrelia burgd. fully antigen 0 SI < 2
IF-G**
Borrelia peptid mix IF-G** 0 SI < 2
Borrelia LFA-1 IF-G** 0 SI < 2
Borrelia IF-G review
The LymeSpot-revised Test does not indicate Interferon-gamma (IF-G) active T- Lymphocytes
against Borrelia.
Please be aware of the low number of lymphocytes in the stimmulation Elispot LTT assay.
This may underestimate the actual activity.
Borr. burgd. fully antigen IL-2** 1 SI < 2
Borrelia peptid mix IL-2** 0 SI < 2
Borrelia LFA-1 IL-2** 0 SI < 2
Borrelia IL-2 review
The LymeSpot-revised Test does not indicate Interleukin-2 (IL-2) active T- Lymphocytes against
Borrelia.
Please be aware of the low number of lymphocytes in the stimmulation Elispot LTT assay.
This may underestimate the actual activity.
Chlamydia pneu. IF-G** 1 SI < 2
Chlamydia pneu. IF-G review
The LymeSpot-revised Test does not indicate Interferon-gamma (IF-G) active T- Lymphocytes
against Chlamydia pneumoniae.
Please be aware of the low number of lymphocytes in the stimmulation Elispot LTT assay.
This may underestimate the actual activity.
Chlamydia pneu. IL-2** 0 SI < 2
Natural Killer Cells Heparin 9 % 6 - 29
Natural Killer Cells absolute 171 /µl 60 - 700
Heparin
CD-57 positive NK-Cells Heparin 2 % 2 - 77
CD-57 positive NK-Cells absolute 34 - (AGAIN - 34) /µl 130 - 360

I am not sure the cd-57 test are they - or what.. i am sorry. The - is after the 34.

So this is it smile

During that period around 1 year i tooke maybe 5 different antibiotics with different protocols. DOXY, monociclin, Azithromycin, - and 2,3 more but i forgot their names. I tooke also plaquenil and other ingredient. The effect is almost 0. A lot better than 2,3 years ago but still no progress.

My symptoms were and are almost and only very strong pain (muscle, joint and so on) sweatness and tingles in my hands sometimes legs. I think some of the pain is nevrological (nerves). Before i had a lot memory problems - now i am better.

Now my strongest pain is in the shoulder blades - horrible.

It is typical for me to have pain crises - like everythink is ok and booom - then again ok.
By "ok" i mean again discomfort in all my body but not strong pain (or at least not strong for me, compared with the crises).

So to your question - my DR. always spoke to me for that co-infections and he mentioned babesia and bartonella?. I dont know in that results - are they tested. But he told me that antibiotics are good also for that co infections.

Post Edited (L.Botev) : 2/16/2018 12:09:36 PM (GMT-7)


L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/18/2018 2:36 AM (GMT -6)   
So, can someone look my lab test and tell me what he thinks.
Also is it normal to drink 1 year a lot of ants and don't have a result?
Thank you.

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 217
   Posted 2/18/2018 1:32 PM (GMT -6)   
Hi Botev
I have quite similar results as you have, also with the same German lab. My CD57 is lower than yours though, and have been since I started treatment in May 2017. My lymespot results have been a bit higher than yours, with the highest result of "4".

I too have been trying different protocols, as some seemed to have little effect, while others increased my liver values to the point that I had to take a break. I'm now on a protocol using doxycycline, azithromycin, plaquenil and rifampicin. In addition I'm taking an antiviral/immunostimulant.

I actually sent blood for the same DNA test that you mention a month ago, and will probably have the results soon since I just payed the bill (which probably means the results are ready). I think this test is supposed to check if you are part of a very small portion of people that are harder to treat than others, my doctor said around 1-2% have this gene.

Anyway, I feel I've been making a little progress on my latest protocol which I've been on for 3 months now. My heart rate seems to have slowed down a bit, and my stool is much better than earlier. I hope the improvement will continue since I still have lots of symptoms to treat. I will be happy to share my result for the HLA-DR test when I receive them.
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/18/2018 3:29 PM (GMT -6)   
Hi, Red Label,

Nice to meet you.

What a coincidance with same clinic and similar results. Hope you feeling well after the all of this. Since when do you have symptoms? And dont make my mistake not to make diet and detox during the treatment. I just didnt know about all of this...

RedLabel
Regular Member


Date Joined Feb 2017
Total Posts : 217
   Posted 2/19/2018 4:21 AM (GMT -6)   
My symptoms started in the summer of 2016 with sore throat, very high fever, burning skin and white swollen tongue.

I have been eating gluten, dairy, egg and sugar free for 6-8 months. I didn't feel it helping at all, just made me miserable as it was very hard to attend in any social gatherings with these diet restrictions and no alcohol intake either. Well, I stopped this strict diet in december because I have also had problems with loosing weight since my infection started. Went from around 80 to 70 kg the past 1.5 year. I now try to eat a lot of vegetables, drink lemon water, and generally eat as healthy as I manage without it affecting my daily choices to much. I don't eat sugar or drink alcohol though, and I stay away from dairy for a few hours before and after I take doxycycline. I have not felt any bad effects from changing my diet back, but I guess it's different for everyone
Lyme, CPN, Yersinia, Coxsackie, CMV and Bartonella after LLMD visit.
CD57 0, 2, 0, 3

Started treatment in May 2017
Currently on Azithromycin, Doxycycline, Plaquenil, Rifampicin, Delimmun

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2293
   Posted 2/19/2018 6:26 AM (GMT -6)   
Hi L. Botev,


Good morning, To get more responses about your lab tests I would suggest stating a new post/thread.

Just put "Need help explaining testing results" in the subject/topic box.

Sometimes pots don't get revisited and your new question may be missed.

I think this will work, you take care, Jo

L.Botev
Regular Member


Date Joined Feb 2018
Total Posts : 20
   Posted 2/19/2018 12:01 PM (GMT -6)   
Red Label, good for you that you have symptoms from soon. Maybe that's why your results are bit higher than mine. I had my symptoms 4 years before knowing that is lyme and as i know the more chronic it is the harder to discover and heal.

goshawk - thank you for the advice. I will do it because i really nead a second oppinion.
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