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Update, 1st phone consult with Dr c

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Posted 8/21/2015 11:41 PM (GMT 0)
Well got to speak with Dr c on Wednesday. (I was on 100 mg minocycline x 2 a day. And pulsing 5 days/5 days off 250 mg azithromycin x 1 a day). I was flaring (herxing) pretty bad on the azithromycin, so Dr c now has me take the minocycline only. Will consult again in 5weeks.
Something yesterday I started to see black spots in my vision. Did not feel well and spent most of my day under the blankets. This morning still felt very weak, stayed in bed. Today seeing lots of black dots throughout my vision, are these what you call floaters? What are these? I am hoping someone will tell me these are from die off and maybe that's why I have felt so weak. I am detoxing more than before and taking so many probiotics.
Love to hear your comments. My family are. Thinking I have gone quite mad when I told them about the black dots. Please forum friends make me sound a little sane before they have me locked up.....lol
Posted 8/22/2015 3:23 AM (GMT 0)
My floaters are usually black and squiggly and when I try and look at them they move. Did that make sense?
Posted 8/22/2015 6:10 AM (GMT 0)
Did you start the mino and zithro together...or one at a time?
Posted 8/22/2015 2:05 PM (GMT 0)
Thanks for the replies.
Mister mike, most of the floaters are black but also lots of lighter squiggles and yes petered they do move and I notice them more in a light source. Is this from die off?
Girlie, I did start the mino and Zithro together. Found it hard on the five days I was on the Zithro. Mino is a lot gentler and Dr c said that it gets deep into the tissues and is good anti inflammatory. Probably why my joint pain is not so bad now. So just on the mino for the next 5 weeks.
Go to see the neuro/muscular/geneticist on Tuesday to get the results of my DNA tests. Will be interesting to see whether or not I have FSH muscular dystrophy. I still feel it is the Lyme causing the symptoms of FSHMd. He will not consider Lyme, says Lyme is today's fad............lol. Will update on this next week.
Posted 8/22/2015 3:13 PM (GMT 0)
If a doctor won't consider Lyme, then they will be much, much more likely to misdiagnose you - please be aware of that. Doctors do feel a need to label sick people with something, so be sure to do your homework before accepting just any diagnosis.
Posted 8/22/2015 3:53 PM (GMT 0)
quilty - even if Dr. C. prescribes two antibiotics to take at once...you really should only start with one...otherwise the herx could be too much for your body...Also, starting with one...if you have an immediate allergic reaction - you will know what caused it.

I also start the meds on half dose...of what he prescribes.

(shh...don't tell him that I do that...lol)

I have told him on different occasions that I have backed off on my antibiotics (either to half dose, or to nothing) when I was herxing bad. I do not phone him immmediately...I tell him at my next appt. I'm not paying extra to tell him something I need to do.

I think maybe he is realizing that we need to 'control' the herxes...and not keep it going...as he told you to stop the zithro. Maybe, just maybe, Dr. C. is learning a little something from us...lol

I hope this doesn't sound like I'm 'bashing' him. I feel very very fortunate to have him as my Dr. He certainly has a lot of pluses. His calm demeanor - you can talk about anything to him...he's never irritated...when I tell him that I had to stop or cut back on my antibiotics - ...and he's never arrogant.
AND - he is in Canada. For me - to travel to the U.S. every 4 weeks would be a huge expense...and very difficult - as my husband would also have to take time off work. That would just add to the stress of it all.
Posted 8/23/2015 2:08 AM (GMT 0)
Hi traveller. I will be checking the DNA results very closely, but I understand that they are extremely accurate. So if it shows musc dystrophy there won't be too much I can do about it.
Girlie, please help.. I read your post above. I have not taken the Zithro for 7 days. Just 100mg mino per day x 2. I have literally been bedridden for 2 1/2 days. I have not got the energy of a newborn. Walking is virtually impossible, my body folds in a stoop. Seem to have developed an irritating little cough that will not stop. Feel like real bad. Doing lots of detox. Oh and headaches, and I never get headaches normally. Do you think I should cut down on the mino to 100 mg a day for a while? Feel like I'm going to die... Have never experienced a herx this bad before. Thanks for any advice.......
Posted 8/23/2015 2:52 AM (GMT 0)
Stop the mino and continue to detox. I started the mino on half dose - so 100 mg once a day. And I herxed.

But stop - dont take it tomorrow and when you feel the herx has lifted go back on mino but half dose. (100 mg once daily)

After a week - if youre feeling ok on the 100mg once daily you might want to do an additional week on that dose before going to 100mg twice daily.
Posted 8/23/2015 2:57 AM (GMT 0)
It only took me an MD and a Neurologist to misdiagnose me and cost me money. Then I got smart enough to do my own research.
I love my LLMD and am so very glad I found him.
Posted 8/23/2015 3:20 AM (GMT 0)
I realize this is scary, so I wanted to pop in here and just be a second voice on this and agree with what Girlie has said about stopping your abx completely for a bit. Your herx is too severe and there's no good reason for it, plus your body won't heal as fast if you are herxing too much.

I also agree with what Girlie posted about restarting your and again as well. Good advice, all of it.
Posted 8/23/2015 6:13 PM (GMT 0)
Thanks so much, I am following your advice. The headaches already cleared. Still under the blankets. So grateful for your guidance.
Posted 8/23/2015 6:30 PM (GMT 0)
Quilty - I read on one website that symptoms of FSHMD usually appear by early twenties in 95% of the cases...
I know you're past the twenties...as your daughter accompanied you to Dr. C. to assist you.

Just sayin' - the odds are with you that you don't have it... yeah
Posted 8/23/2015 6:32 PM (GMT 0)
Oh YAY!!! I'm so glad your headaches are better! Those are horrible.
Posted 8/23/2015 6:33 PM (GMT 0)
...oh and great that the headaches are gone already!!!
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