Lyme

[marinastarbucks]

Hi All,

I am still wondering if I might have lyme. Am overseas at the moment so can’t get adequately tested. I was diagnosed “seronegative” RA in 2007 but have never tested positive for anything. very low sed rate, negative RF factor, etc etc etc. I do have low vitamin D usually and low wbc/rbc. I have been on mino since end of October. My joints are doing well (mainly was just in my hands and wrist) but the severe fatigue is still there (My biggest RA symptom). I am just wondering, what is the standard lyme protocol for chronic lyme using doxycline? What is the dosage usually? It seems really hard to find good info on line. I went back on enbrel last week so have taken it 2x because of the fatigue but now i feel worse. I am scared to suppress my immune system when it is not clear what I have. Thanks for your help

Marina

[Maz]

@marinastarbucks wrote:

I am just wondering, what is the standard lyme protocol for chronic lyme using doxycline? What is the dosage usually? It seems really hard to find good info on line.

Hi Marina,

Dr Burrascano has written in some detail about the recommended protocols for chronic Lyme and also the ILADs (Intl Lyme & Assoc. Diseases Society) have compiled treatment protocols, too. Here are the links you can print out to have a good read:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://www.ilads.org/lyme_disease/treatment_guidelines.html

These two resources are considered the gold standards for the treatment of Lyme with antibiotic therapy. It’s quite complex, so it’s better to work with an experiened LLMD (Lyme Literate MD), if at all possible.

I believe it’s possible to still get IGeneX Lyme testing from abroad. You just call the lab and have them mail you a testing kit and ask them what to do (how to expedite blood sample to them, etc). It does require a physician signature, however.

Lyme patients often don’t do well when their immune systems are suppressed as the infections proliferate and enjoy the lack of immune surveillance. In some cases, immune suppression will provide temporary palliative relief of symptoms, but disease lab markers can worsen over time, too. It’s wise to check into this possibility, if Lyme is suspected.

For the brain fog and die-off symptoms, have you tried any detoxification methods or diet modifications, Marina? If so, has anything helped?

[marinastarbucks]

Hi Maz,

Thanks for the great info. I appreciate it. I have tried some major diet changes. I went gluten and dairy free at the end of October. I then quit caffeine in mid-January (huge for me since I drank about 6 to 10 cups of coffee a day). The diet has really helped in many ways. And for a while after I quite the caffeine I was sleeping great. But then everything got out of whack and I started to spiral downhill. Like I said, I think the mino has really helped with the movement of my joints. I also think the diet has helped with not having inflammation. The extreme fatigue continues to be an issue.

I just realized over here tonight that my filter water system was not working properly. I may have been drinking contaminated water for about a month. This may explain some anxiety and half asleep sleep at night. I am going to try to take an anti-parasite medicine and see if that helps and maybe back off again on the enbrel. I didn’t want to go to on it, but I feel being where I am now overseas, I kinda need to get by until I can get back to the States in August. I will see what the parasite medicine does. I was hospitalized over here a year ago for a parasite. I never felt so good as when I got out after being on the anti-parasite/cipro ivs. I wish I had stayed longer on that iv medicine and wasn’t so eager to get back to work!

Thanks for listening
Marina

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