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Hello everyone,
It has been five weeks since I returned from Iowa where I had my 10 IV clindy treatments to boost my AP. It's hard for me to believe it has only been over a month, as so much has seemed to happen since then. I have meant to update sooner, but things have been a whirlwind.
A brief history: I was dx with RA in 3/08. I had extreme fatigue, sleep issues, bouts of brain fog and depression and severe joint pain and stiffness in major and minor joints, mainly hands, knees, hips, and feet. Although I exhibited no outward joint swelling or degeneration at this point, my Anti-ccp test was high, and my doctors told me my RA was “aggressive”. I had been treated with Plaquenil for “unexplainable” inflammation for over a year prior to my RA dx, and have an extensive history of ENT (mostly throat and sinus) infections. Immediately after dx I was placed on prednisone, and methotrexate. Thankfully, before starting another (IMO, dangerous) DMARD, I found the Road Back website and the amazing people here guided and steadied me until I was able to begin my own road back. I started my AP with Minocin 100 mg bid MWF in early May. Within about a month, I started to notice a lessening of the stiffness and pain in my larger joints and was able to get off the prednisone and cut my Methotrexate in half. There were a few flares/herxs in that time, but I also had some pretty good days. I did however feel that the IV's would help even more.
My IV treatments in IA with Dr. S went beautifully. No problems, just some fatigue. Then when I arrived home, I felt like I had a terrible flu for about three days: ache, exhaustion, depression, etc. I wondered if I had made a big mistake. I had started to feel better with the oral AP. What had I done?
Around the 5 or 6th day after being home I realized that my afternoon crying jags and brain fog had ceased! Then I noticed that I wasn't walking like a toddler with a full diaper at night or first thing in the morning anymore–my knee and hip pain/ stiffness was gone! I was able to braid my beautiful daughter's hair again- my fingers worked!!! Then I decided I needed to start working out again and even met with a trainer. I hadn't taken any pain meds in over two weeks (other that tylenol for a headache) This all happened within three weeks of my IV's!!! Just as many people on this board have said, you feel worse before you feel better and one day you will just notice that something that had burdened you before will be gone. I was so grateful and excited. :roll-laugh:
Then the “**it” hit the fan. My father had some sudden, medical issues arise. I spent the better part of the last two weeks with him at the Mayo clinic, calling doctors and waiting for test results. Thankfully, the scare of him having a mass in his heart turned out to be scarring and a “shadow” on his echo. Sadly however, he was diagnosed with prostate cancer. We are very optimistic as his urologist says his is very treatable. The worst seems to have been the drama all the testing and waiting for results. Also, the same day my father was diagnosed, my 22 year old nephew was having a routine surgery to fix a deviated septum, when they found a mass in his nasal cavity that turned out to be malignant! :crying:
The stress of the last two weeks manifested in feeling like my body hit a wall at warp speed. I have been flaring terribly everywhere (even joints that didn't bother me before), my brain fog and depressive bouts have returned with a vengeance and I have less than zero energy, I have been running a low grade fever off and on and my lymph nodes in my neck are swollen and tender. I had blood work run at my GP's office yesterday and everything was within normal limits, so they think it is either a virus or a bad flare. I spoke with Dr. S in IA and he prescribed one clindy IV a month for the next six months for me. So I will have one tomorrow. I am hoping to get this under control again.
I just feel so poorly…The last few days have shaken my confidence in my road back. NOT IN AP AS A TREATMENT, just in how I will respond. I fear that every time my life gets stressful, I will derail like this. I am scared that although my disease is early, and outwardly I look ok, I will degenerate too fast for the AP; or that I am too overrun with whatever the heck mycoplasma is ailing me to kick it. Is there something else wrong with me that (once again) the docs have missed? I am trying to tell myself this is the fear and anxiety talking and that if I felt that good, that fast from the IV before, I can again. For any of you “old timers” out there with any similar setbacks and recovery experiences, I'd love to hear them.
Many thanks,
Amy:blush:
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Amy,
I thought of you often and wondering how you were doing. So glad you kept us posted. I am really sorry about your father's diagnosis.
Glad your initial response was very positive. This shows AP is working for you. I had some very good days and some horrible days. After 3 1/2 months, I can tell I am moving forward. I do seem to have a lot more energy than before. You might have heard I even took a big trip to Sydney, Australia, last month!!! I did very poorly after I came back from Sydney. This was because I could not adjust jet lag well. Funny, any time when I travel from East to West, I have no problem with jet lag. The other way around, I cannot deal with.
I had about two or three weeks real depression and mood swing after I started AP. It was really bad. Plus herxing made it worse. I doubted also, about AP. It scared me to death to find out my Total Lung capacity test (TLC) decreased to 56% from 75% (before AP) after I got back from Sydney. I was in total panic. I was totally freaked out. Thank God for Maz, John McD, Richie, Kim, Diane and all the wonderful people who really pulled me out of this emotional panic attack.
My pulmonary doctor told me that my CT Scan did not show any progression which was an excellent news. As you know TLC can be very subjective. So I will go back to do TLC after Sept.
Some positive things for me is that just a couple of weeks ago, I realized my fingers are not as swelling. I also have lower ESR readings
19!!!! I have never had this good readings for a year and half!!!!Recently I am feeling a lot of pain because I weaned off plaquenil. I do not take any pain killer. I hope I will feel a little better soon.
Yes, stress can flare things up. Do not think too far ahead. Once we get this RA controlled, we still may flare up, but the intensity will be a lot less.
Hang in there and you are making a lot of amazing progress in such a short time!!!
Please keep us posted.
JB
Amy – this is very early on the road for you. Probably your great response to the IV's didnt set you up for what happened afterwards. This is to be expected, especially after a period of great stress, such as you have been through. The fact that you are 'flaring' in joints that hadnt bothered you before and the other feelings of being unwell all, in my opinion, are indicative of a herx versus a flare. The great thing is that you went onto AP early after dx, which often bodes well for a quick response. The fact that it is an aggressive RA may mean that you have a bigger herx response than some others. You may want to discuss with your doc the possibility of lowering the oral mino for a while to a level that may not cause you so much pain in the short-term. You may also need some additional pain relief for now. You might also try the hydrogen-peroxide baths (recipe below) to see if they give you some relief and, if you can get to a far-infrared sauna, I hear they give great relief also. Stay with it and, meantime, address your symptoms of pain as you can. Lynnie
Soak in a bath of 2 cups Epsom salts and 2 x 16 oz bottles of hydrogen peroxide for about 30 minutes. It helps rid the body of toxins deep in tissues and kills a wide spectrum of microbes. (First, soak in tub about 5 minutes before adding the peroxide and Epsom Salts to open pores.) This can be done at least 1 to 3 times per week. Take no vitamins 4-8 hours before bath. The hydrogen peroxide may be increased later to 3 bottles per bath if well tolerated.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Oh, Amy, I am so very sorry for all the yuck in your life right now. Just as you've already experienced gains, before all the drama, you absolutely can turn things in that direction again.
Every stressful period in my life since I've been sick has resulted in setbacks. Seems when you are the one always taking care of everyone else that we can't dial back that instinct to save a little for ourselves. Please try to deal with one problem at a time and take time each day to reflect on the positives.
Sending you big hugs………kim
Amy,
My hubby has been on AP for 20 months, IV and oral. He, too, was doing beautifully and flared up around mid-june, which he is just starting to come out of. In his case, it was DEFINITELY physical and mental stress that he was under at the time. I think when you are treating an illness like this, things like that aggravate it. I don't know if there is any way to completely avoid it. But it sounds like that is what triggered your flare – the stress that you have been under probably k nocked your body out of whack. Good luck on getting back to where you were – in my hubby's case, it has been slow, but I feel like he is making a turnaround.
Hi Amy!
So sorry to hear of your recent stresses. I too have been under some stress and do notice that it increases my symptoms.
Like you, I had such good luck with the IVs and felt so good. Now, a month later, I feel like I am going back down hill. Dr S has also recommended the monthly IVs for me, but so far I am having no luck finding anyone to give them to me. My rheum doc is trying to find someone but its not looking good. Add to the fact the problems with my insurance, and that, in itself, is very stressful.
My pain level has been ok (not wonderful, but ok) but the fatigue and brainfog seem to have increased. I have my fingers crossed that this is a herx but its been going on far too long for a herx, IMO. So I keep hoping I can get another IV soon.
Good luck to you, I hope things smooth out for you soon!
Thinking of you,
Kat
JB- Thanks for thinking of me. I am sorry to hear you are still struggling. But glad to know that your have had some glimpses of rainbows through your storms. You are a tough cookie, and inspire me to keep fighting! Thank you.
Lynnie- Thanks so much for the reminder about the baths. I haven't done one in a while. I will try it tonight. Thanks for always being a level voice of reason and belief in trudging onward. I appreciate your dedication and research on AP and your willingness to share your experience with others.
Kim- Thanks for your kind words. Your replies are always like a big virtual hug! I am sorry to hear stress sets you back, too. The nature of the beast, I guess. Again, thanks for the support.
Goodwife- Sorry to hear your hubby has hit a bump in his road back. I hope that he is back to “feelin' like a million bucks” again very soon.
I am so grateful for the kindness of those of you who also navigate through these quagmires of diseases. It is nice to speak to those who understand; especially on the days when my body is so out of whack it feels like any sense of health and normalcy is beyond reach. It helps me keep on, keepin' on!
Wishing all a well and wonderful day.
😀DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
There is no doubt in my mind that stress weakens the immune system and then the bugs that are there really get you.
Stay with the protocol and do what you can for pain ( chronic pain is a big stressor). Anything you find relaxing and peaceful would be good too; try to find the time.
I'm certain this will turn around for you, just hang in. My daughter (RA) has no symptoms most days, but if she gets stressed and/or overtired back they come, not like when she was first diagnosed, but painful. She tries hard to keep her life on an even keel, but there are always things beyond your control.
Better days ahead!!
Kat, Amy,
I am going to have same problem, finding a place where they could do IV for me AND the insurance can pay for. Right now I found a willing doctor. But he does not want to go through insurance. He agreed to do Clindy IV for me for $100 per shot. It's just a lot of money for 10 IVs.
If you girls find there is a better way I can do it while get covered by the insurance, let me know.
JB
Dear Amy,
So sorry to hear about your Father and your recent RA setback. Don't be discouraged. I am an OLD TIMER with AP. I also remember back in 1999, BEGGING for a PCR mycoplasma test for a year – being refused time and time again….Finally I had one and of course it was positive.
I also well remember the LONG journey to health, this supportive board and the wonderful people from Road Back who pushed me along the ROAD from 1999 to 2003!
It took 2 years for me to notice ANYTHING from my AP treatments (but Herx's) but by the end of year 3, all of my labs were normal and I was in total remission.
My big mistake was stopping AP, 2 years after normal labs and feeling great! Wrong advice……Never again…… Now about 19 months out – a relapse as I am ill again.
However, I know AP works….. I was on 70 mgs. of prednisone and many other toxic drugs prior to starting AP, just to function. No more steroids for me, I will lay in bed until I feel better first. The prednisone ruined the cortex of my adrenals and now I have to take replacement hydrocortosone for life!
I also believe that along with the AP, stress reduction is important and diet played a BIG role in my recovery. These pathogens all LOVE sugar! Many AP persons do not believe that diet has anything to do with recovery, it is a personal choice, based upon much research.
Don't give up, hang in there – it could take much much longer for you to see any real measurable and permanent results. That does NOT mean that you are not recovering. You are !!! Remember that you are ” early on in this AP game” as another member stated. Some persons have taken AP for over 4 years, never showing any sign of real improvement until long after.
Wishing you and your family the best,
Jane
JB, right now I am looking at at least $300-500 per IV, so that $100 per IV sounds pretty good to me. I wish I could get them for that. 😕
I too have found big stress to be a factor in how I feel. I'm absolutely positive that it was extreme big stress (illness and deaths of my parents) that triggered my SD. Although I'm not a “type A” normally stressed person, I've learned to really not sweat the small stuff and to better handle to bigger stuff. Of course, easier said than done, but practice is easy to come by, as stressful situations seem to pop up all the time.
The other important thing to remember, for me, is patience. Dr S told me that by the end of this treatment, I would learn patience. Truer words were never spoken. Patience was never my virtue, but I've gotten to be a pretty good student in this journey. In the beginning, something else I remember the good doc said was that I needed to remember that I was sick; really sick. I would have good days and not good days. Gradually, the good days would start to outnumber the bad days. I'm glad to say, it happened! I kept a journal (more detailed in the beginning) on weather, what I ate, how I felt, what I could and couldn't do. I did learn that certain weather was tough on me, eating smaller frequent meals helped my energy, and sleep in the beginning was imperative! Overall, what it showed to me was my progress from month to month. Also, the process of writing the details down stopped it from rolling around in my head, gaining speed and taking me to dark, doubtful places.
How you feel today is not how you may feel tomorrow. It's just tough to focus on feeling better in 6 months when getting undressed for bed today seems like an impossible, painful, and exhausting task. I used to feel like that most days of a week and it makes me teary now just remembering that. I don't have a specific day or date when that turned around. I just noticed one day that it was a bit easier than the day before. I think AP works like that for many of us. Time is a funny thing. A bad week seems 2 years long, and yet 3 months of a beautiful summer comes and goes in a heartbeat.
When I feel stressed, this is what I do to relax. Deep breaths, thoughts of lazy summer evenings and maybe pride at how I'm really learning to care for and heal myself.
I believe you take steps forward everyday. You just can't see them all the time.
Mary,
Great post! I couldn't have said it better. You hit the nail on the head. Here's to many more beautiful days ahead!
Had my RN neighbor over today to give me my Clindy IV. She couldn't get a vein to work:X. She told me she hadn't given “an adult IV” in several years. she used to be a pediatric nurse. I showed her the spots on my arm that seem to work best, but she really wanted to try my hands. (Even though they were cold) and you guessed it…no luck. She tried twice. I asked her to try again, as the butterfly needles don't hurt me, but she declined and told me to call home health care. If it were only that simple. My two other friends who are RNs (and would be more receptive) are on vacation or out of town. My best friend's neighbor is an RN so she is inquiring whether she will do it. It's over an hour drive, but I will go down there if she agrees.
It is just so irritating that trying to find a place to administer these IV's is so tough. :headbang:
Kat, i am so sorry you are in a similar boat.
Thanks to all fo their support and well wishes. This board is wonderful!
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
Hi MaryP,
I Really enjoyed your “summer evening” post.
Wednesday I just finished my 5th cycle of clindy and have been on AP for 7 months. There's lots of good news as I continually show small little improvements about every day. I do note these in my log and highlight them in a light blue hue. It is very encouraging to see my log becoming more and more blue.
I am still herxing from the IV's and it lasts two days after the IV's stop. The herxing is not fun, but I'm delighted as I know the little bastards are still getting blasted!
My stress is pegged pretty high now as I was let go from my job 1 week ago. But like everyone, I am doing the best I can.
Enough for now,
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"
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