New and a little bit lost

Hi all,
I am Helen and i am very glad that finally i discovered this forum and i am reading so useful things about lyme. My story begins in 2015,when i had an episode of optical neuritis, 6 months after begin out of nowhere numbness, joint paint, tingling and other symptoms that come and go with severe fatigue that left me with no energy to do anything. I had the posible tests 6 MRIs, blood test for Lupus, RA even multiple myeloma. Then after 3 months the symptoms stopped and for 2 years i have no symptoms at all. And in 2018 symptoms began slightly and now i have burning pains, depression, fatigue and so other symptoms. I suspected lyme, but i live in Greece and all doctors laugh and tell me that i am crazy and that there isnt lyme in Greece. So, i sent blood on my own in BCA and i had a weak positive Elispot and CD57 is 21. The only band is positive on WB is igg 41. I have read many post here and the topic new to lyme and i am positive that i have it. I just feeling alone with this, nobody believes me even my family and in Greece we havent LLMD. I just want to tell my story and that i am afraid i couldnt handle it without help or a proper doctor. So this thought makes me feel even more depressed. Reading our stories is very helpful and having other people are and feel the same situation makes me feel i am not the only one. Thank you and if someone wants to say or ask something, i would be glad to hear.
P. S Sorry if my English isnt so well, i have been talking for ages

Post Edited (Elen8) : 10/21/2019 11:42:33 AM (GMT-6)

Thank you so much for the answer JovaLyme,
I am starting to search and i can see from the forum the sources for herbs and supplements. I just feel unsure that i will manage it on my own, but i have to try for my health.

If you are able to travel, then there are treatments in Germany that are promising. I'm so sorry that you are feeling so alone. People treat this in a very wide variety of ways, so explore what's available and what resonates with you.

Your English is fine, but please don't be shy regardless! No judgment here!

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Lyme, bartonella, babesia, mycoplasma, EBV
Mold, MCAS, POTS, CFS/ME, HPA axis
Herbs, AmpCoil, DNRS, diet, nutrients, EOs

Elen8 said...
Thank you again, my main symptom now is burning pain in right side of body 24/7 and fatigue and depression, which is better last month. I have a very good friend in UK and i am thinking travelling here otherwise i am starting with doxy.
In Greece we can buy antibiotics without a doctors prescription, so i could buy anything i want, but i know i should read first and be careful.
I am thinking that if i start doxy, maybe it doesnt help and then i think what i have to do next. (the overthinking and bad thoughts part i guess)

Doxy won't clear up a long term or chronic Lyme. It might do a little bit on its own, but it won't help with the biofilms or persistent bacteria.

It's a good place to start, but you do need to look at other medications. It really would be a good idea to get tested for bartonella and babesia too, as Borrelia doesn't often travel alone.

What did your MRI scan show? Any subcortical white matter T2 flair?

The spine mri was clear, but the brain mri show a white T2 hyperintensity yes, which i read is common in Lyme. Of course 3 or 4 neurologists said it is untypical and doesn't prove anything.

No i didn't read of it, i will search it. Did you use it? Have you try IV antibiotics? I am asking because i read of people using IV because Lyme is in central neurous system.

Yes i am reading it, is very interesting. Before 4 months i visited the "top" infectious disease doctor, who told me that i have CFS and not lyme. She was living 20 years in Boston and told me i have not so hard neurological symptoms. So i asked her what treatment did she offer for lyme and said me doxy for one month. I figure it out that she will not help me at all. She saw the exams for BCA and told me it isn't lyme. Of course i am not convinced of CFS.

Yes i am perfectly sure i have lyme, because all of my symptoms and the exams which is weak positive. I will try doxy and i will read for the other medicine. So, are you living in UK? Because i have friends there and i am going to ask you if it is easier to find a LLMD there.

Yes, i have been searching all these days and i will continue. I am hoping i will find somenthing and the challenge is that it can be suitable for me when i try it. Thank you so much for the answers, i feel better now that i am talking, is the feeling that someone has the same thing and understands you.

Elen8 said...
Thank you again, my main symptom now is burning pain in right side of body 24/7 and fatigue and depression, which is better last month. I have a very good friend in UK and i am thinking travelling here otherwise i am starting with doxy.
In Greece we can buy antibiotics without a doctors prescription, so i could buy anything i want, but i know i should read first and be careful.
I am thinking that if i start doxy, maybe it doesnt help and then i think what i have to do next. (the overthinking and bad thoughts part i guess)

You can subscribe to LLMD MR Treatlyme online treatment book.

He has several treatments for each infection (Lyme, Babesia, Bartonella)



https://www.treatlyme.net

You can also pay for an appointment via Skype.

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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

JovaLyme said...
I forgot about that one Girlie.

Is that Marty Ross?

Yes

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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