Update–It's been 5 weeks since IV treatments to boost AP

[JBJBJB]

Kat,

If you don't mind driving down here, Dr. C T would be willing to do it. If it's just two IVs a month. He said he did not mind doing this for other AP patients. He used to be listed on Road Back as AP doctor but he no longer practices it.

JB

[kat]

You know, I had thought of that and then dismissed it, but that's because I was thinking about a series of them and that it wouldnt be worth driving back and forth for 5 days. But for only one or two a month, its an idea. I wonder what he'd charge me as a consultation fee up front…. I imagine he'd want to meet me first.

[wendi]

gulf Gypsy,

 

I lived in Indian Rocks Beach for Years!!  Now I live outside of Tampa and miss the beach dearly!!  Keep in touch!!!

Hugs,

wendi

[lynnie_sydney]

Jane, thanks for your post and I hope you start to feel some relief soon, must be so frustrating to have symptoms back after total remission, yet your positivity shines through! Mary, your post was beautiful and timely.

In line with both these posts, my AP doc recommends a 3-prong approach to treatment – stress relief (meditation/prayer, focusing on healing), diet and abx. And both she and the naturopath she works with tell me that Dr Brown and his team absolutely were focused on healing the gut (the naturopath's brother met Dr Brown and she went over to spend time with one of his team just after Dr Brown died).  I think so many of us are Type A personalities – rushing, focusing on doing/what the abx are doing/not doing that we don't cultivate patience – we want it all now! And we want it to be done for us. I will post in another thread something that really helped a good friend of mine start to become a co-creator in her healing when she (initially) felt quite helpless with an aggressive cancer. 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)

[Maz]

Amy, so very sorry to hear about your loved ones being diagnosed with cancer and that you've had this setback right on the heels of all this. My Dad was also recently diagnosed with prostrate cancer and has opted not to have surgery. He's 83 now and didn't want to deal with all that. So, he is taking hormone therapy…unfortunately causing breast swelling and hot flashes, but said to slow the progression.  Also so sorry to hear of your nephew…let's hope and pray his cancer has been found in good time and is easily treatable, as many cancers are today. My husband had parotid gland cancer a decade ago and, after surgery to remove it and radiation, he has been in the clear since….in fact, he ran a marathon two years ago!  So, there is great hope for life after cancer….just keep believing it.

Amy…this may not help, at all, and probably reads like a comedy of errors! I went through similar, soon after I got sick with Lyme 2 years ago…my Mum passed away from really aggressive breast cancer within weeks after her diagnosis….a complete shock….and as I just got sicker and sicker with the added grief, someone sideswiped us and nearly totalled our new car on the way to Thanksgiving dinner with friends in a rain storm – me, wrapped like a mummy, in agony and unable to move in the front seat. When the police arrived on the scene, they asked if I was hurt or had any pain…I almost burst out in hysterical laughter. Pain? Nah!! Even if I had hurt something, I probably wouldn't have been able to tell. Then, to top it all….when we got home that very night, the basement bathroom sewage pump exploded and it was literally like the s**t hit the fan. Poor husband was up all night swobbing down the furnace room and cleaning out all the gunge while all I could do was lie on the sofa in the basement, frozen in pain and so upset I couldn't help. What irony….all of it.

Having been through all that, I still don't know why life brings these deeply challenging situations our way all at once. And, probably one of the hardest things for me, personally, quite aside from the pain, was the inability to physically do anything to help in any way, at all. The shock waves, coming one after another, all in quick succession, from all these events literally seemed to physically manifest in every part of my body. All this came right at the beginning, in the early months after that nasty tick bite…and I feel sure all contributed to making the Lyme much worse and ultimately triggering the RA.

There is nothing more I can add to all the wonderful posts you've already received, but really just wanted to send you a few words of support and let you know that you're not alone. I'm sure there are many here who can understand what you're going through to some degree…and you will get past this. Ultimately, all your loved ones need from you is your love and support….so don't worry if you can't do anything to physically help right now….but you can love them while also nurturing yourself back to wellness. It will happen, as it did for me…so please just hang in there and look after yourself, Amy. You'll be such an inspiration to your Dad and nephew, as they face their challenges. :dude:

We're all here for you and sending healing blessings,

Peace, Maz 

[JBJBJB]

Kat,

He charges $15 copay and $250 for first visit. Most of the insurance covers it because he has MD and is a family physician. I will ask him all the questions you have if you want me to. You are welcome to stay in our guest room if you need a place to stay.

By the way, I have not got a bill from my insurance yet for the IV I did in Ida Grove. It's been almost four months. If they do cover most of it, I will call the insurance company, asking them what is the best way to do the IV locally.

If nothing really covers, I will increase my flexible spending next year.

JB

 

 

[Patti D]

Hi Amy,

Boy, I am on my way out the door but after reading this post I just had to stay awhile longer. I too am new to this AP, 7 almost 8 months now and as you've probably read my RA was triggered too like Maz, from lyme.

While reading your post I thought, wow, that sounds like my life last year and too some degree still this year. Last May got lyme while gardening for about 40 hours one week while getting ready to put our house on the market. I remember the moving “dirt” thinking it was tiny spiders. Got a sore throat etc but nothing urgent. 28 days later woke up and couldn't walk. 2 weeks later good friends were seriously hurt in a bus accident in Europe. Also my only sister announced her divorce, and was hospitalized with depression, anorexia. 2 weeks after that my youngest daughter's best friend,19 years old was killed innocently in a car accident by a man who had a medical condition. Did I mention, my husband worked in the building industry and need I say any more on that. Well 4months after lyme my condition went right back down the tubes and now it's RA.:sick:

I consider myself the “rock” for many people. I love to help others and have always had a pretty good ear. I would guess that the people who hang out on this bboard are also the”rock for others” type of person, yourself included. You can tell in the posts. These folks are good people who have so many positive things to say to our fellow cyber friends, yet in the mist of their own misery, they find time to encourage others, give advice or just try to listen with much empathy.

 Maybe that is really the fiber that binds us all. We come to this board probably because we don't want to burden our family with too many complaints or tears.We still want to help others but now need some help ourselves too.

 With that said, I am hoping & praying for you as well and know you will get better soon, just like I will be getting better soon. We just have to have faith and patience like someone else had posted as these diseases did not develop over night so I am guessing they will not be gone over night as well. Keep the faith. Good times are right around the corner;)

Oh, and by the way, my stress level is about the same or higher that last year. But I am different. I am taking things a little slower, I now have too. This may just be the blessing in all of this. Peace to you and I am sending well wishes your way:blush:

Happy days!

Patti

[kat]

Hi JB,

Your doc is not in my network so my insurance won't pay for any of it. I also have not gotten the bill for IVs from the hospital nor have they sent a bill to my insurance (who is going to deny it because its out of network).

[kat]

Just got an update from my rheum doc. Local IVs will run me around $600 a piece, YIKES! And they say they doubt my insurance would cover it so I would have to pay for the whole thing myself. So, we are going to try an IM injection next week to see how that works. My insurance should cover that, because it will be done right in his office.

[JBJBJB]

Kat,

That was so outrageous expensive!!! Hope IM will work. I am sending you a PM.

JB

 

[kat]

Thanks for the PM JB, I have responded!

I've been toying with the idea of trying to find a private nurse, but so far I have not figured out how to find one without going through an expensive agency. Has anyone tried this route? I know I can get the Clindy, still just no one to insert a needle for a reasonable price. :crying:

[Donna]

[user=30]lynnie_sydney[/user] wrote:

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.

Lynnie, the peroxide recipe makes me curious.  My husbands doctor has now recommeded a treatment that includes putting hydrogen peroxide into the vein.  Have you heard of this?

[lynnie_sydney]

Donna – no I have not heard of hydrogen perxoide injected into the vein. You might want to have a good discussion with the doc about what he hopes to achieve by this and what the Hydrogen peroxide will do. It is great to educate yourself as fully as possible and to ask questions until you are satisfied with the answers you receive. The hydrogen-peroxide baths (and the far-infrared saunas) are a means of de-toxing the body via the skin. 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)

[Donna]

Thanks Lynnie.  It sounded a little scary to me, something about oxygenating the cells.  Hmmm.

[kat]

Well, I hit another brick wall. My rheum doc ordered the IM Clindy but they sent him the IV stuff instead. He said he can only get the IM Clindy if he orders a ton of it, and of course he won't be doing that. So we now have the stuff for an IV but nobody to administer it unless I am willing to pay $500 or $600 for the one IV. I can't afford to do that. I really had high hopes for the IM injections. 🙁 :headbang:

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