Home Forums General Discussion Can I start AP while undiagnosed?

This topic contains 18 replies, has 6 voices, and was last updated by  Maz 1 year, 6 months ago.

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  • #458380
    Trudi
    Participant

    I have not read this thread. However, sunny22’s thread on MTHFR caught my eye. Yes, I would also get tested. I am homozygous. SO IS MY SISTER even though her doctor said she was negative. Long story short, make sure to get your results.
    Best to you,
    Trudi

    Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

    #458383
    PhilC
    Participant

    Hi Kat,

    In my research I’ve found that azithromycin is okay during pregnancy. If I found a Dr to prescribe it- what should be the protocol? 250 mg bid?

    Since azithromycin has a long half-life, the doses used for long-term treatment are different than how it is typically used. Here are two doses I’ve seen people using:

    1. 250 mg per day for five days, followed by a 5-day break.
    2. 500 mg QOD; e.g., 500 mg on M/W/F or 500 mg on Tu/Th/Sat

    Of those two, the second one makes more sense to me.

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #458465
    Kat0605
    Participant

    I wanted to give an update in case anyone else is in a similar situation. Al of the AP Drs from the Roadback database I talked to wouldn’t treat me until I delivered.

    I was able to get a last minute cancellation appointment with a LLMD (she’s booked through October). We went through my symptom history and she decided to start me on Azithromycin and Ceroxime along with some other supplements that I can add to my profile later. I am doing Igenex testing, but she went ahead and diagnosed me without blood work.

    Even though she did not advertise herself as an AP Dr- I sent her name into the database because she treats Lyme based on clinical symptoms (which include autoimmune diseases) and doesn’t require a blood test. Looking into the LLMD options in your area is a great place to start to try to find a Dr to treat you using AP. I wish I had done this research sooner.

    She’s agreed to treat me indefinitely! For me, as an undiagnosed, but symptomatic pregnant Scleroderma patients- she was the only Dr who would do anything except say “come back free you delver and we will see where you are. I’ve gotten worse since November and I feel like a ticking time bomb- delivery will likely cause my symptoms to flare even worse then they are now. Even if it doesn’t work, at least I feel like I’m trying everything!

    I will be back with updates as I go through treatment.

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #458466
    Maz
    Keymaster

    Hi Kat,

    I wanted to give an update in case anyone else is in a similar situation. Al of the AP Drs from the Roadback database I talked to wouldn’t treat me until I delivered.

    My guess is that none wanted to get involved as history has shown that docs who use the treatment are targeted when using a different standard of care. Not that antibiotics aren’t given to pregnant women every day – ones that are safe to use in pregnancy, just that in what is likely determined to be a “high risk” pregnancy, their medical license is on the line, if they are viewed as treating outside current standards of care for rheumatic diseases.

    I was able to get a last minute cancellation appointment with a LLMD (she’s booked through October). We went through my symptom history and she decided to start me on Azithromycin and Ceroxime along with some other supplements that I can add to my profile later. I am doing Igenex testing, but she went ahead and diagnosed me without blood work.

    Experienced LLMDs are wonderful and have training and full faith in what they are doing!

    Even though she did not advertise herself as an AP Dr- I sent her name into the database because she treats Lyme based on clinical symptoms (which include autoimmune diseases) and doesn’t require a blood test. Looking into the LLMD options in your area is a great place to start to try to find a Dr to treat you using AP. I wish I had done this research sooner.

    Kat, I’m not sure I got the name. Can you re-send it to me via PM so I can check? Thanks.

    I could not agree more about LLMDs being a fantastic alternative to AP docs. They treat so much more than just “Lyme,” which has become a garbage bucket for any number of tick-borne and reactivated latent infections. Unfortunately, this title gives the impression that Lyme is all they treat, when in fact, they’re treating a plethora of chronic infections, various strains of mycoplasma being amongst those.

    She’s agreed to treat me indefinitely! For me, as an undiagnosed, but symptomatic pregnant Scleroderma patients- she was the only Dr who would do anything except say “come back free you delver and we will see where you are. I’ve gotten worse since November and I feel like a ticking time bomb- delivery will likely cause my symptoms to flare even worse then they are now. Even if it doesn’t work, at least I feel like I’m trying everything!

    That’s wonderful news, Kat, and think you’re wise to cover all corners to protect your and your baby’s health. LLMDs aren’t as afraid to treat infections during pregnancy as they know that some infections are passed in-utero (e.g toxoplasmosis and babesiosis) and it could harm the fetus not to treat! So, sounds like you’re in good hands and doing what every mother would want to do to protect their child. Well done, Kat. Even if treatment needs to be prophylactic at this stage, it’s prophylaxis that is warranted. Heck, people take doxy when traveling to avoid malaria and some of these infections that have been associated with rheumatic diseases are pretty horrendous even when not pregnant.

    I will be back with updates as I go through treatment.

    Thanks, Kat. We will appreciate your updates and I, for one, will look for them. Thank you and very best to you and your precious baby.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

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