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Hi everyone,
Well, I finally saw a bona fide ABX/Lyme doctor. Hooray! What a psychological relief to feel supported by a professional and hear encouraging stories from a live person. Finally. I could never have made it this far without all of you here encouraging me and giving me suggestions and sharing your stories.
This doctor is the physician assistant of Dr. J in D.C. and is essentially putting me on his protocols. She emphasized several points, but one thing that she made clear is that I need to be sleeping deeply and not waking up through the night with pain in order for my body to heal. She gave me a few prescriptions to help with pain and sleep (no narcotics, nothing addictive at low doses) with one to be used only on an as needed basis.
She said she could tell I was going to need to go slow and the she wanted me back on minocycline, but that we would stick with doxy till I was at a lower pain level. Right now she is having me do 100mg doxy MWF BID, plaquenil 100mg every day, sleep meds, low dose naltrexone, as much melatonin as needed to onset sleep in order to avoid using heavier drugs, curcumin, magnesium, boswellia, probiotics, sacchromyces boulardi, and enzymes to help break up immune complexes. She also emphasized how much the immune system hates stress and loves pleasure, so no stress and lots of doing things I enjoy. I can’t see straight enough at the moment to know what that is at the moment (being alone and reading a book – haha not with two preschool age kids) Over time she said she would like to see me on mino M-F with a break from other antibiotics every third week, but no breaks from mino expect every Saturday and Sunday. Since my herx is so high from mino right now, she is okay with doxy twice a day MWF till I am feeling some better. She is also referring me for a baseline eye exam for plaquenil management.
Here’s an interesting topic – she was not familiar with peptide treatment, though from my description she felt it could be contraindicated for ABX therapy if the peptides are in effect locking into the attacking antibodies that the immune system is using to clear out infection. Although these antibodies are attacking our tissues in the process, they are also working hard to get us well. We want them to go down over time as infection is cleared out and we don’t want to summon them in army fashion by hitting infection too hard all at once, but overall, they are needed and to turn them off with an exact match peptide is essentially turning off exactly the antibodies your body needs to get well. Am I missing something about how peptides work? Did I present it wrong to her? She did not go into this detail, all she said was it might not go well with ABX as she did not know how it would effect antibodies. Thoughts?
Anywho, even though I’m in a lot of pain tonight (this PA said I have been way overdoing it and that I must give my body time to rest and heal and have breaks, that my immune system just needs a little help and space to get back in control 🙂 ), I feel encouraged and hopeful. I’ve decided not to do peptide shots right now and I am going to have about a zillion labs done tomorrow to test for every bacteria and hormone and other deficiency under the sun. Yay. Someone who is thorough and that I am on the same page with. Finally.
Thank you guys! I don’t know what’s ahead, but no other treatment makes any sense to me. I have to see this through.
Laura
Good for you Laura. It can be the start of healing to connect in with a doc with whom you feel comfortable and who understands. Hope this is a first step to much better things for you.
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)Thanks for the encouragement, Lynnie. I had my labs done today – over 15 tests – hoping it all helps point my treatment in the right direction. It’s still hard as I feel I am in one long never ending herx at the moment, but I dug myself out of this spot last winter with ABX and supplements, and I will do it again this winter.
I am still interested if anyone has thoughts about whether or not peptide treatments inhibit the immune system from effectively ridding the body of the targeted antigens in ABX therapy by effectively turning off the antibodies the immune system uses to fight disease? I got so much worse overall while doing the peptide treatments, though I have been contributing it all up to this point on having acquired Lyme right at treatment onset – which I still believe is a huge overarching part of it, but I wonder if I also have not been effectively able to fight infection with the peptide in me?
Laura
Laura – I have found melatonin helpful for sleep and I also use it with 5-HTP (apparently affects different pathways) which is used by many Lyme docs for those who are ‘wired but tired’. Just a hint on the melatonin. Too much wont work and the same for too little. You’ll probably need to experiment with amount, but often a very small amount is what works. Around 1-2 mg seems to be the optimum for me.
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)Thanks, Lynnie. I’ll keep that in mind when using melatonin – right now I am using 3mg. I also have some 5-HTP recommended by my other doc for raising seratonin levels, but have not been using it lately. I’ll give it another try.
Hi Laura – I am just getting good internet connections again – I was in the hospital for 5 days & just got home yesterday aftern. so this is the reason for my delay in getting back to you. As to peptides from what Dr C told me he said yes one can take ABX but as u know you have to go off during a time frame for a few days & then after that time can resume. What the 2 do together I cant tell u for sure & I am not sure that most doc’s have that answer that I have talked too. With that said for both of us peptides could NOT offer long lasting help – I BELIEVE with all of my heart it is because there was a different virus bacteria infection in the way for me that is primary and my Scleroderma was 2ndary as evidenced by the fact that I have gotten my SCL70 markers down into a remission status but many of my problems still march on in advancing as it is Lyme that is my primary issue.
Since peptides for my SD offered me no long term help i have not and my doc who gave those felt so too to not continue – I decided not for now to try to get the indepth testing done as I NEED to better address the lyme get on monthly IV’s IF i can finally get them. Lyme has hit my stomach and I had a small bowel partial obstruction which showed artery stiffening the same problem going on in my lungs causing PH. It’s showing me oral AP is not enuf for me alone and it explains why i was in the hospital 6 wk’s ago from my stomach back then they could not find it – it got worse & this is the 3rd episode in 6 wk’s without any explanation of what was going on I was having a hard time taking med’s almost any med including AP.
Anyways my opinion & I am not a doc but I would follow this doc’s advice & see how things go for you. Does she feel Lyme is behind the RA after all or just is going to treat you based on symptoms? I take it Dr W is not really a LLMD. I am on the hunt for a doc who will adminster IV AP.
For now I would wait get this behind you more before trying peptides you could be confusing the issue.
Not much help but in my heart of hearts I knew after 3 peptide shots it could not give me lasting help and I felt strongly as it was after my 3rd injection that I finally got the results I was positive for Lyme from IGENEX so I knew it was due to the Lyme that kept the peptide from helping me long term.
Many doc’s say herbals alone will get Lyme but I have found for me as one doc told me I have neuro lyme and it’s chronic by now that I think combos for me are a must!I think sometimes logic along with what our body shows us must be considered. You will have your hands full enuf more than likely with this protocol from this doc follow it & see give it 3 months and gauge it then.
Best – Jill Lyme
Oh as to melatonin – there is some info on here i posted in regard to this – it has anti inflammatory properties. I take more than 3 mg’s & it has helped my raynauds considerably – as a matter of fact how I know it is from the melatonin is I was off of it for the 5 days I was in the hospital recently due to my stomach and my raynauds came back a little it was not totally as bad but was seen when it was absent before I take more than Lynnie does. small dogs of 20 lbs can take 3 to 6 mg’s safely long term – I use it on my senior dog for help with his inflammation & it helps circulation too. i use it on my middle aged dogs for their circulation and it helps their tongue color is much better their cerebral area can be sluggish in this breed. Anyways a human can take up to 30 to 60 mgs I take 30 to 45 mg’s at nite & I have ZERO issues with it & it has been the right dosage for me. I read that humans can take up to 60 & it was at 30 as opposed to 3 mg’s that I got the remission of the raynauds. I stayed on LDN during my hospital stay so I only dropped the melatonin rather than ask hubby to bring thaat from home. Of course run it by a doc. am passing the info on as to dosages I have no problems getting up in the AM.
A good nites sleep is crucial to healing for sure good uninterupted sleep.Best – Jill Lyme
Thanks for all of these posts. Very information for noobs like me. I haven’t had a good, uninterupted night’s sleep in years.
todd bean look into adrenals as well often they can be stressed due to being ill etc. good adrenal support helps.
best Jill Lyme
Hey Jill,
My only concern about adding melatonin is that there is so much literature and studies contraindicating melatonin for RA because it appears to stimulate the immune response and increase inflammation on one apparatus while working as an anti-inflammatory on others. My thought is that it must be kicking the immune system into fight mode on some level and creating a herx that is seen as a contraindication – though I hate to sit in the doctor’s seat as perhaps I am wrong. I’ve had two doctor’s tell me that melatonin is fine, though I have to say that I feel doubtful that either has specifically researched RA and melatonin, so for that reason I’ve kept my dose low.
Here’s the most convincing article I’ve found that keeps me wondering:
http://www.aarda.org/research_display.php?ID=37Thanks for your peptide thoughts. I am not continuing them now and my doctor also said I could do ABX while on them, but he did not prescribe to an ongoing infectious RA so he was not looking at it through these glasses. It still seems to me that if you are turning off the antibodies that the immune system is using to clear out the infection, then this must be inhibiting ABX treatment, but I’m not a peptide expert, so I am not sure – just trying to think it through.
I hope you are doing better – so sorry your Lyme is highjacking your life at the moment – if it’s any comfort, I relate. I can barely walk these days, but I have to believe that better days are ahead – at least I finally have a doctor who I feel can really help me.
(: Laura
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