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Hi there, Milo here,
approx 9 yrs ago I was diagnosed with RA and put on arava, steroids and another drug that potentially damages the retina in the eyes, that was when I said ENOUGH! My hair was falling out..there was only limited vanity with that, mostly I just thought that I’m poisoning my body and there must be another way, I stopped the medication and the rheumatologist yelled at me and told me I would be wheel chair bound within 2 years and not to come crawling back to him, I was stunned by his reaction. I spent the next few years trying many alternative treatments including 2 trips to an ayurvedic ashram in India with limited but slightly improved results.
I came back home and my pain was increasing, I went off all gluten and meat, then I went to a new rheumatologist who told me I dont have RA, I have Psoriatic arthritis and was put on sulfaslazine this helped me to walk and for the next 2 years, I felt manageable, then the sulfasalazine stopped working, the pain returned and I could only manage it with NSAIDS, I decided to do a 21 day water only fast, it reduced the inflammation in my body & pain reduced significantly, I went in at 64 kilos and came out at 50 kilos in 21 days, I lived on salad and steamed veggies for 6 months and then started to introduce other foods, my pain started to increase but nothing like it had been, over the next 18 months I was eating fish, meat, grains, sugar, carbs and my pain started to escalate again, I excluded starches and grains, but the pain kept increasing until I was up at 2am most mornings sobbing my heart out with unmanageable pain. I went to my Dr who put me on steroids…Oh What a relief, I felt almost normal for the first time in so long, but of course trying to manage the steroids and the side effects was impossible and I had to stop taking them, so the pain returned, the NSAIDS I had been taking caused a stomach ulcer and with a leaky gut I can no longer take any anti-inflammatories, so…I took out yet another loan and flew to the states to do a 35 day water only fast, I get such relief when I dont eat, not complete relief this time but 80%, the only problem is that at some time I have to eat, unfortunately my potassium levels dropped whilst fasting and have caused an irregular heart beat (have yet to get that checked out) I started eating and the pain came back..I had been vegetarian predominantly just having occassional fish,then went vegan after the fast with no grains and no night shades no gluten and no dairy, I dont notice the improvement until i eat something i shouldnt then the pain goes from the 40% I been living with daily to 100%. I used to get a day here and there of pain relief, it seemed so random but I was very grateful for them..then the days of reduced pain stopped and the pain became constant, so in March this year I went down to Melbourne to see a Dr for the AP she started me on biaxsig 150mg 1/2 am and pm 3 times per week, Doxycylin 1 tablet in the pm 3 times per week and 2.5 mls amoxil in the am 3 times per week, it’s been really hard as she is in Melbourne, me in sydney, trying to manage the pain with just panadol, she would tell me to increase the medications to daily for a week and then back to intermittent dosing and see what happens with pain, but I have been in so much constant pain I cant tell whats what. So I went to another Rheumatologist who did some test for some gene to see if I have psoriatic arthritis and over the last 2 years I have been displaying symptoms of Ankolysing spondylitis, he also tested me for this and again for RA, reults he said show I have RA and osteo arthritis, although some people who have tested negative to the gene have still shown positive symptoms for PA and AS, he wants me to go on methotrexate and hydroxychloroquine, I began sobbing, the Dr told me that I’m in denial about the disease, what a stupid thing to say, I am heart broken, I have been trying for so many years to treat my body to try to clear the disease in it without the use of something as toxic as methotrexate, I feel like I have failed, and Im very sad, I have just read that it can take a long time for the Antibiotic protocl to work, I have only been on it for 4 months, Im scared to hope and scared not to. I am now scheduled to see a new Dr in Newtown for some AP treatment and hopefully IV antibiotics to spare my little tummy, I need to stay in touch with the road back because I dont know where else to go to hear someone tell me to hang in there Milo, I keep crying and crying feeling like I’m aging so quickly, sad that making love with my husband causes me pain in my hips, or going for a walk swells my knees or my jaws are so sore I cant chew, some mornings I cant lift my arms up or walk to the bathroom, my poor husband didnt sign up for this…. I struggle with the decision of whether to leave the marriage. I have to hope that there is hope, I am still trying to stay employed and that is a daily challenge. I’m sorry if this sounds self piteous guess it’s just where Im at today, my appt with the IV AP Dr is on Aug 27th, can’t wait.! (am now eating meat and feel better for it)Hi Milo
I am so sorry to hear you are feeling this bad.
Firstly, were you tested for HLA-B27 genetic marker? If positive, then it’s 90% certain that it’s Ankylosing Spondylitis that you have.
And, if that is the case then, in terms of diet, it seems to be starches that you primarily need to eliminate from your diet. You might want to check out the posts of DragonSlayer memberlist.php?mode=viewprofile&u=200 and also look at the site http://www.kickas.org.I have seen both the docs you mentioned. Both are good in different ways. I generally go down to Victoria once a year now, though it was twice a year initially. Often these protocols need tweaking a lot and, almost invariably, need tweaking from time to time ongoing. Dr D in Sydney will run any tests that you ask for – and, if you haven’t had the HLA-B27 test, then it would probably be a good idea to put that at the top of your list. And, as you know, her clinic does administer IV Clindamycin where appropriate.
In terms of Leaky Gut, you may well find that gluten is something else you need to cut out. You may want to check out this doc’s approach to this – he is an expert on Leaky Gut and also administers AP. http://www.mdheal.org/leakygut.htm
4 months is not a long time on this road and things very often get worse before they get better. Meantime, you might want to check out with Doctor D what options she suggests for pain relief in the short-term. Also, please let her know how very depressed you are – she is a very approachable doc who has treated herself for RA and who is very willing to look ‘outside the box’ for answers.
Hang in there! There are a lot of great people on this forum who will offer their support and their collective wisdom.
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)Depression is a physical side effect of the disease itself, too! Try not to be too hard on yourself.
You’re in luck! lynnie_sydney is a great resource, and she says she has seen both doctors you’ve mentioned. That’s a great start!
Improvement takes time. Do not despair! Use your energy for securing good AP treatment and take care of yourself.
In the beginning, I would read and re-read parts of The New Arthritis Breakthrough for encouragement. Keep the faith.
Thank you for your kind support, I have tested negative to HLAB27 but have all of the symptoms for AS and PA, The rheumatologist I saw who diagnosed me for Psoriatic Arthritis informed me that testing negative doesn’t mean I dont have AS. The Spondylitis Association of America also supports this view and they have many cases of sufferers of AS and PA who have tested negative to the gene.
I would give anything for this not to be my experience, however it is, knowing that not all suffrers of AS and PA have the gene sure helps me to understand why I have the symptoms I have and why anytime I eat starch I go into excrutiating pain, as I mentioned I have been gluten free for a number of years but imperfectly grain and starch free for only 2 or so years.
Potatoes, tapioca starch, potato flour, corn starch, legumes, arrowroot, I just can’t have them.
Thank you so much for suggested links Lynne I am so grateful and it is so therapeutic to have support from some one who knows these Dr’s and whole group of others who understand the suffering, thankoyu.xx.No problem Milo. Would suggest you read DragonSlayer’s story and what antibiotics and adjunctive treatments worked for him.
viewtopic.php?f=3&t=872If he sees your post he may well chime in (is an occasional visitor here these days). Don’t know if Dr D has other AS/PsA patients on her books but know that she is very willing to work with you (versus a lot of docs), so suggest that you educate yourself as much as possible. . 😀
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)Hello Milo, you say you are into month four on AP ? When I got to around the 4th month I experienced what I would describe as the Mother of all depressions. I have never felt so low and there were times I would lie in bed trying to decide the easiest way to end my life. I thought the AP wasn’t working, the pain was getting worse and I just couldn’t control my emotions, I was crying all the time and I felt like I was going mad. After reading the New Arthritis Breakthrough I thought I was prepared for the Herxing (pain getting worse before it gets better) but I was not prepared for this black abyss I had entered. It was only when Lynnie _Sydney suggested that there was reference in the book about how depression could be part of the Herxing that I could then link the two together, maybe the antibiotics had crossed the blood/ brain barrier ? Anyway to cut a long story short, Lynnie was right as the depression slowly started to lift and then the physical improvements started to trickle in slowly. A few months later my blood work came back normal , the grim misery has gone and I am now back to my old self ( a sarcastic, bossy, but generally wonderful human being that I was before the RA kicked in 😆 ) I sort of think this maybe what you are going through and if it is, then Im telling you its good . I know that sounds odd but it does suggest that things are moving on the right track and you just have to keep reminding yourself this. xxx
Thank you so much Lemons for your reply, I have also felt like ending it all and wondering how I could do it with minimal damage to anyone else (which is impossible) it is such a relief to read that I’m not alone in that, I’m in pain so consistently now I don’t know what is herx and what is just pain, is this normal? Or is the herx response more difinitive than RA PsA AS pain?
Has anyone written on their experience of IV AP? I’m not sure what to expect from that and am very interested to hear someone else’s experience.
Please accept my apologies for spelling names wrong and using incorrect terminology I am very new at this, I am sad that you are all here but grateful to have others to share this with, thank you.@milo wrote:
Has anyone written on their experience of IV AP? I’m not sure what to expect from that and am very interested to hear someone else’s experience…..Please accept my apologies for spelling names wrong and using incorrect terminology I am very new at this, I am sad that you are all here but grateful to have others to share this with, thank you.
Milo, out of curiosity, I did a search to see if any of my old posts about going to Ida Grove for IVs were still there. I copied one link found here… but what happened after this may also be helpful or of interest. If I find the sequel(s), will come back and add more.
viewtopic.php?f=1&t=9915&p=71810&hilit=Ivs+Ida+Grove#p71810
When you find the key to your puzzle, the rest of the pieces (hopefully) will start falling into place.
Edit… added after search done and this was found:
viewtopic.php?f=1&t=7010&p=60339&hilit=Ida+Grove+IVs+pneumonia#p60339
Hopefully, this will take you to the post that tells about my getting home after the IVs and developing respiratory problems… found to be from lots of die-off from the IVs doing their work. This period of pneumonia passed quickly, and I soon began feeling so much better! [end of edit]Hugs,
AFThank you A friend,
They were both very good links to go to and I appreciate the honesty of the posts. I go to my new Dr for the IV’s on August 27th, I am looking forward to it as it is the real beginning of my journey into well being and although further pain is scary i’m almost hoping for a herx response as Dr Brown says in his video that herx is an indication that the treament is the right one and we are on the right path to better health. I’m scared and hopeful in all one and sure hope that this treatment works for me, I really don’t see why it wouldnt work.
I have been desperate and longing for the connection and the truth that I get through people on RBF, Thank you for contacting me A Friend.Hi,
How much Doxycillin are you taking (i.e., the dose in mg)?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi,
I see a likely problem, and it is very obvious to me because we see it here all the time — your treatment is too aggressive for an inflammatory condition like you have, especially when one has been sick as long as you have. You just recently started your treatment and you are on three antibiotics! Although using multiple antibiotics is a good idea for several reasons, most people in your condition need to work their way up to that. And, of course, the fact that you stopped taking anti-inflammatory medications doesn’t help matters any.
@Elsewhere milo wrote:
I am on 50mg of doxycillin in the evenings only on MWF, I have been of the thought that the meds I am on are insufficient.
That’s actually a reasonable (conservative) starting dose.
@milo wrote:
NSAIDS I had been taking caused a stomach ulcer and with a leaky gut I can no longer take any anti-inflammatories
What exactly were you taking?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil,
I was taking over the counter NSAID’s Nurofen, ibuprofen, and steroidal inflammatories prednisone, I cant remember the dosage.
MiloHi Milo,
How often do you eat restaurant food, or food that was cooked by someone other than yourself?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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