come back - lots of new issues

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come back - lots of new issues

Postby manga on November 8th, 2013, 5:31 am

Hey All - I have not visited the site for few minths as I thought all setlled down and I will live with this, but things changed, unfortunately. This is my story.
At the beginning of year I read an article about SM and I figured out I have a few symptoms (yes, I always was hipochondriac) so I went to neuro. She conducted the exam, asked to do electrilites and lyme check and said that neurologically I am fine. Electrilities and lyme came back normal so I started to panic and more symptoms showed up (to be honest - now I even dont remember them) so I went for MRI, it was clear. In the meanwhile I got terrible cramps in my hands on the pinky side. I just wanted to consult the results of MRI with neuro so I took the first one in row, she said MRI is perfect. I asked about the cramps in hands and then she asked if I maybe noticed that my muscles are smaller... They are not but the moment I left her offcie I checked on google what that can be. When I saw what she meant by her STUPID question, I realized that I have fascics that I have never paid any attention to. Then it all started. I went for EMG, clear. Then I found out that I have magnesium latent tetany, I was relieved. I had some cramps which went away after tones of Mg, that was in April. I thought it will now all go away. But it has not, the twitching, widespread one continued with no relief. I did the tetany test again in August and it was much much weaker however I had still the same fascics. that started to drive me nuts and started to get more and more microcramps here & there. So I went for a second EMG - clean (in Sept). The neuro asked me to redo the Lyme test in a different place. I did and it came positive in IgM and border in IgG what means a fresh on-going illness, deveral lyme-specific bands. Again - I was releived. With these results I went to Lyme doctor (IDSA one, no ILADS) and she said I definitely dont have Lyme, my symptoms do not point to that and she does not know the test I did. I did circulating immuno complexes using Western Blot. She asked me to redo the Elisa test - came back totally negative. ILADS docstors said this is Lyme, IDSA - no Lyme. I got doxycyline for 3 weeks (actually my general doc prescribed me). The rule with Lyme is that, if you have it - it will get worse at the beginning. It actually got - I was all tensed, terrible neck and leg pains, headaches. Then after few days it got better. I really dont know if it was real or I imagined that.. And here is where I am right now. 2 weeks of doxy, really a lot of micro cramps all over my body (hands, belly, neck, back, feet, arms) that last for second(s) and the same level of twiching as months ago. The worst things are happening with my back and throat. I get severe cramps in my back, I can feel them for few days, some are for secons and they go away. I had my back tested in Sept and it was totally fine. As far as my throat is concerned - it aches me on the top, I also got some micro cramps here & there, I sometimes feel that there is something sticked to it. I had my tongue tested last week (in a new way, she put the needle thru bottom of the jaw and got to the tongue, all perfect. Next part of the story is that when I was waiting last week for neuro appointment I met a girl whose muscles are disapearing, she had earlier on tetany & lyme and now she has changes in EMG... In the evening on Lyme forum I ready a very similar story of a lady my age. That knocked me down totally. Therefore I called the EMG doctor (she is best in Poland, she is member of US nero board as well and here in Poland teaches others how to do EMG), I have an appointment next Saturday. I want her to test all those typical muscles and those that I have biggest problems with (back, tongue, hands).
Please let me know what you think. I am terrified, I cant think, work, exist. I am only 30 years old, I want to live.
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Joined: March 19th, 2013, 4:17 am

Re: come back - lots of new issues

Postby aztwitchy on November 8th, 2013, 11:52 am

sorry to hear....sounds like you are in that middle ground of trying to decide who is right...the lyme "literate" doctors or the rest of the medical community. unfortunately after all of my research I don't have the foggiest clue where the truth lies. Here is the sad thing to me.....I have not seen a single case online\personal where someone who was treated for lyme that had widespread fasciulations was totally cured of them by long term antibiotic use which is the standard "protocol" of the lyme doctors. Also there doesn't seem to be any solid science in my opinion that long term AB use results in complete cure of "chronic lyme"....that said there are a lot of people who have a lot of the same symptoms who all test positive on western blot for that is the main thing that keeps me believing there is something to it all. Chronic Lyme probably is a real thing...I just wish there was more solid evindence of the right way to test and treat for it.

hope you find answers, hope, and health. Please keep us all posted on your personal story.
"Health is a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity." ~World Health Organization, 1948
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Re: come back - lots of new issues

Postby BFSBurger on November 8th, 2013, 5:25 pm

Antibiotics for a suspected case of Lyme actually made me worse.

Much, much, much worse.

When i came off them, I believe the anti-inflammatory effect of Doxycycline wore off, and the reflex inflammation throughout my whole system took over en masse.

My very worst weeks with BFS were the 2 weeks after I stopped Doxycycline heavy-dose.

Be careful.

How I resolved my BFS within 1 year of onset:

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Re: come back - lots of new issues



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