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We're back from a visit from the LLMD and my husband is going to take Diflucan and antimicrobial herbs (Zhang protocol) for a month. Then he's going to see how he handles just being on the herbs without any antibiotics. He went off IV antibiotics in September and switched to two oral antibiotics and then a couple of months ago moved down to just one antibiotic. He is continuing with the IVIg although we are spacing that out to every six weeks instead of once a month. My husband is in a big hurry to get off meds and I and the LLMD have had to push him the past few months to keep taking the antibiotics as we didn't want him to undo all the progress he has made.
We are slowly regaining our lives. The IV pole no longer holds central court in our living room and we have moved the medical supplies and equipment out. In addition, I have whittled down the amount of supplements that I leave out on the counter as I think they carry a certain subconscious message that there is illness in the house.
I am being cautiously optimistic about this change and am hoping that we can make this leap.
Parisa,
That is a HUGE step! Give your guy a big hug from his friends at RBF. 🙂
We all have this fear that “moving on” will jinx us and I swear I don't know how to get past that.
Wishing you continued success…..kim
“We are slowly regaining our lives.”
What wonderful words, Parisa. Congrats on all of these positive changes!
:roll-laugh:Great news Parisa!
I know what you mean about being cautiously optimistic, you want to celebrate but at the same time you know it may be temporary. Patience has never been one of my virtues, and it's so tempting to quit taking the meds when I feel better, but it sounds like you and your hubby are making good decisions on that front. Looking forward to more good news!
Parisa….what wonderful news!!!
We are slowly regaining our lives. The IV pole no longer holds central court in our living room and we have moved the medical supplies and equipment out. In addition, I have whittled down the amount of supplements that I leave out on the counter as I think they carry a certain subconscious message that there is illness in the house.
With all that your husband has been through, I can only imagine how nice it was to have the IV stuff gone, and pills hidden. I can't wait to meet up with you some day, maybe at the next lyme walk, when this is all behind us…..
You mentioned on another thread that you have attended a lyme group here in SD where Prof. Nicholson spoke? Is this group still in existence and can you provide me with the specifics? I contacted the local CALDA rep about meetings, but never heard back.
thanks, nancy
[user=13]Parisa[/user] wrote:
We are slowly regaining our lives. The IV pole no longer holds central court in our living room and we have moved the medical supplies and equipment out.
I am being cautiously optimistic about this change and am hoping that we can make this leap.
Parisa,
This is HUGE. I am sooooo encouraged and inspired by your story. You walked me through those scary days when my lungs were not doing well… comparing to your husband's lungs condition, he was in a worst shape. I am really happy for you and your husband. Finally you guys saw the light at the end of the tunnel. Hats off to you!
JB
Hi Nancy,
The Lyme support group is still in existence although we are overdue for a meeting. I'll let you know when the next one is. I've been thinking it would be nice to to have a little get together with the RoadBackers in our area and now that the holidays are over maybe I'll coordinate something.
JB,
I'm glad that my husband's recovery has inspired you. I know I looked to the very few posts about lung conditions reversing and clung to them and made them my guidling light. I think there are alot of similarities between my husband's condition and yours so I'm glad that you are pursuing Lyme treatment.
Linda,
It's easy for me to tell my husband to keep taking the pills but then I'm not the one swallowing the dang things. When he was really ill, I was always trying to pour some nasty concoction down his throat. It seems that I was always asking him if had taken this supplement, that medication or done a treatment of some kind. I had a running list in my head of things he had to do. I'm really glad to let that go. It's freed up a lot of mental space and time.
We often forget how difficult this is for our loved ones. Your husband may not have been very lucky in the health dept – yet :), but he is very fortunate to have you.
Linda,
That's nice of you to say that. It makes me sad when I read posts by people whose loved ones aren't supportive or have abandoned them. The physical disability is enough but wading through treatments protocols, doctors etc. would be just overwhelming and I give kudos to the ones who have done that all by themselves.
Parisa – that is such wonderful news for both of you. Your patience and focus have paid off. Kudos to you both and :dude: for your fabulous support. Lynnie
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)[user=11]linda[/user] wrote:
We often forget how difficult this is for our loved ones. Your husband may not have been very lucky in the health dept – yet :), but he is very fortunate to have you.
Parisa, what an incredible update! What a journey it's been for you both and I just want to second Linda's post. I think your hubby must be an incredible guy for you to love him so much that you have been by his side through thick and thin and, not only that, using what energy researves you had leftover to reach out to others here to support them, too. You're just such an incredible person and I've learned so much from you, Parisa – I'm so honored to know you.
Peace, Maz
Well, thank you all for the compliments, although I'd like to think what I've done should be the norm and not the exception. And Maz and Lynnie, you have definitely helped many, many people with all of your hard work.
Parisa,
I am over the moon that your husband is doing so well. I never had IV or any of that IVIG just taking the antibiotic pills, supplements and herbs, etc. This makes me beliefe that there is a good chance I will get there eventually.I can imagen getting all that stuff moved and looking forward to a more normal life. I am glad you stuck by your hubby. Mine is a jewel, he is so caring. I am looking forward on doing more things in my live too and that includes traveling.
Yes this board really has helped a lot and I tell my husband many days what this or that person has said or done. He even has read a few msg because I think they are really great and encouraging to me and him. Every time I read about someone starting to be able to cut their meds I let him know so he has this reminder that this will pass too for me.:)
Eva:D
Eva Holloway
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