Home Forums General Discussion Sooooo Many Questions

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  • #304744
    Valsmum
    Participant

    I have so many questions since I started AP one month ago. I would appreciate anything at this point.

    note: Really bad herx, I am  in a wash out for a week +. My labs prove I was in a herx all the numbers that went up did and boy did they go up, the ones that were supposed to fall did, and no marked increase in eosinophilis-an indication of an allergeric reation to the drug.

    1. I have an appointment to get a Clindy IV early nexy week, is the herx from Clindy usually mildier than the minocycline ?  I'm scared to get another herx, it's taken it's toll on me big time and I had to have my knees asperated. I avoided the cortisone injection because that last one I had made my heart race and made me short of breath. ???

    2. Since the herxheimer is in medical literature will my rheumatologist believe me if I show him my labs are consistent with a herxheimer ?   I have the defintion for the differnce between a flare and herx.  1. WBC will elevate in a Hrheimer and lower in a flare. 2. A Herx will also exhibit a coincidental elevatin of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hemocrit. 3. A marked increase in eosinophils (for instance 30%) is an indication of an allerigic reation to the drug. Good news I'm not allergic:)

    3.So did Dr. Brown come up with this defintion? If not then I can “prove” to my rheumatologist that I am not having an allergic reaction but a herx and maybe he will help me even more(clindy), he's been pretty cool so far. He does what he learned in medical school and I'm glad I got the minocycline so easily.

    Thanks!

    RA -dxd 9/2009 , AP 9/2010 Sulfasalizine, mino, pred

     

     

    #351467
    Michele
    Participant

    I asked your question 3 years ago. Same issues exactly.

    I herxed horribly with my first doses of Mino, too. 50 mg took me to the ER. Firmly believing my RA was infectious, I went ahead and did the Clindy IV. I would not do the IV again. I herxed for 5 months in uncontrollable pain following that IV. MANY people do not have that issue. I was on the wrong side of the coin flip for that decision.

    But now I know WHY that happened. I am missing a gene to detox. So my body was flooded with neurotoxins and couldn't get rid of them. I even lost my ability to sweat in the epsom salt baths during that period of time.

    Secondly, you might be interested to know that I had the same reaction to oral prednisone. Now I know why…

    I have a lyme coinfection of Babesia WA1. The steroid was absolutely the wrong medicine for that infection. It made it more difficult to breathe.

    I was right about the infectious part: A really incredible doctor did a lot of the “right” testing. Now I'm in hopes she has the right treatment!!! Still herxing today. Detoxing absolutely helps lower my pain levels. I just wish they would stay away 100% Sigh. (I am really a lot better!) The antibiotic Doc used was also not mino. She used Biaxin and Larium along with herbals to target the Babesia. But, she's taking out the coinfections in a specific order. There are more she has to target. Too many. 🙁

    One persons journey on this…it's a very tough question. If I were to do it again, I'd have had that gene test for detox done 3 years ago.
    Doc has me on a very multi-layered detox regimen with supplements, diet, baths, saunas, and colon/liver flushes. They help!

    I don't know where you live, but I see a rheumatologist who is also trained in functional medicine and is an LLMD. Thankful to have her! She is a rare breed for sure. Most rheumatologists don't think across disciplines like this. Their training leads them to treating the symptoms and not the causes. Best to find someone who will look for the cause. Those docs do exist.

    Good luck to you on your decision. It's a hard one.

    Michele

    #351468
    Valsmum
    Participant

    Thank you Michele!

    What kind of test should I get done for the gene detox you mentioned? What is it called? I will probably have it done. One/two weeks after starting mino my CRP trippled , obvouisly it freaked me out. I too went to the ER, I was just too prideful to mention it. 

    I was out for a few hours in the sun sweating it out and now I may push my appt to a week later(for the clindy) and get that test done you mentioned.I don't think I could handle another herx. I am in pain and I'm in a wash out right now, doing the hydrogen peroxide baths and I called a place that does UV treatment on blood as well as oxygen to the blood, it is supposed to help with the herx.

    Prednisone helps me a little and I don't like to go above 10mg though. A few times I have gone up to 20mg and I felt great for a few days until I had to taper down. I don't like the idea of my body turning off it's own cortisol, it kind of creeps me out., but so do a lot of things.

     My knees are the main source of my pain. I would like to try a clindy IM injection. If anyone has had a clindy injection in/or around their knee I would love to know how you responded.Thanks!!

    #351469
    Michele
    Participant

    Hi Valsmum,

    My DetoxiGenomic Profile was done by Genova Diagnostics in Asheville, NC.

    They tested phase I and Phase II . Phase I includes Cytochrome P-450;
    (CYP1A1, CyP1B1 CyP2A6, CYP2C9, CYP2C19, CYP2D6, CYP2#1, CYP3a4)

    Phase II includes Methylation (COMT) Acetylation (N_acetyl transferase)
    NAT1, NAT2. Both have lots of SNP subsets. Glutathione Conjugation; GSTM1 GSTP1, GSTP1

    Oxidative Protection
    SOD1, SOD2

    My Glutathione is the real problem area. I'm completely missing one gene. Another has one chromosome carrying a genetic variation and the other both chromosomes carry the genetic variation.

    This is why every time I had mercury amalgams replaced I flared. My first “RA flare” three years ago was within a couple weeks of my first 2 amalgams being replaced. That was with a non-biologic dentist. A year later and having researched RA and Lyme immensely, I knew mercury was a likely factor in my illness. So when the dentist said I needed to replace a couple more fillings, I sought out a biologic dentist. Even that wasn't enough. I had two procedures about 5 months apart. The first 2 teeth in January did not seem to have trouble. But in June the final 3 were replaced and I had another enormous flare. It was beyond RA symptoms. I had an intense non-stop migraine, horrible light sensitivity beyond my “normal” MP light issues, horrible fibromyalgia, sound sensitivity, peripheral neuropathy, and of course joint pain.

    This lacking gene also causes me to by extremely hypersensitive to prescription medicines. I couldn't tolerate the pain medicines at “usual” doses. Doctors called my doses baby doses. I also became so cautious of pharmaceuticals that I now always start with a tiny dose to see how I react. Then ramp it slowly up.

    I had herxing going on from the MP (which I was not detoxifying) and then I added mercury neurotoxins. That put me way over the top. The MP was a good in-between for me while I researched because it was doing “something” positive. It did help me until I had the 2nd and 3rd mercury experiences. Too bad that they don't look into detoxification in that protocol with more seriousness. It is assumed Benicar is a detoxifier. Maybe it is for some, but it wasn't for me.

    After the dental horror, I asked the dentist what to do and he sent me to a doc to help detoxify or chelate the mercury. He did the most thorough exam I've ever had by a doctor and said he didn't think I had RA but Lyme. He ran a CD57 test and it was a 33. Healthy people should be 100+ It was good he recognized lyme, but this doc didn't treat lyme. I sure wish he did. He was a GREAT doc! I've found a good doc now, but it took a while.

    Hang in there and keep researching and digging into what causes your particular “RA” issues.

    In case you are wondering how much better there can be…at my worst I was bed-bound. I couldn't hold my silverware in my left hand to eat. I didn't sit at the table to eat because it was too painful and exhausting. Now, I am working full-time and I am a teacher and a performing artist. This week I have 8 nights in a row where I will be a solo instrumentalist in a theatre production of “Metamorphosis.” 🙂 My hands work!!!

    I'm not fully back to feeling no pain yet, but there is an enormous improvement. I'm still on this road back…

    Best to you,
    Michele

    #351470
    Valsmum
    Participant

    Thank you again for clarifying your situation. Well I can handle medication, I may be a little more sensitive than others, for example I've had a couple cortisone injections in my knees. One was awesome, and  the other made my heart beat fast and I felt a little breathless.

     After a wash out of a week or so from AP my lymph nodes are swollen. The night I went to ER (after taking mino for a week 200 mg a day)they told me my spleen and liver were a little enlarged, they didn't act like it was a big deal but I need to follow up with a GP. So I have an appt with a dr that will prescribe a Clindy IV, and I keep reading how the majority of people feel really good after it. My CRP is really high so I think it's the best thing for me. I'm just saying my prayers and hoping with a little faith that the IV will bring down some of my pain/inflamation. I'm also going to watch what I eat,my body is so stinken sensitive to anything that passes my lips. Dairy makes my knees blow up the next day as do nightshades. Thanks again Michelle, it's so nice to talk/write to someone during all this .

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