good/bad news

[JBJBJB]

[user=11]linda[/user] wrote:

One little sad note, my son was coming down last weekend to see me, but he had a bad cold, so I had to tell him not to come and see me because I'm on Enbrel. A mother is supposed to take care of her kids when they are sick, not tell them to stay away. It was a very depressing weekend, but it makes me more determeined than ever to “blast the bastards” and get off of these other nasty meds. My most important stewardship on this earth is my children; if I can't take care of them or help them I'm …I don't know what I am. Not happy, that's for sure. So off to Lufkin I go.

You did the right thing. Young men can get better in few days not us. I wished I could have kicked my 15 yo son out of the house when he ran outdoor in short and t-shirt in a 40+ F weather. He came home really sick with high fever and cough. I ended up got it and had high fever for 5 days, coughed my heart out. My husband took me to the doctor's office this Monday. He gave me Leveguin and my fever broke finally.

I have not taken minocyclin. My family doc said Leveguin does the same job killing mycoplasma. I will need to finish the rest of 7 days Leveguin.

Hope your son will understand it and hope he is getting better.

JB

 

[linda]

I'm back but very tired, what a long drive. Kind of bummed, as well. At first Dr. K was very hesitant about trying AP with me. She said she's had only marginal success with patients who had been on prednisone. She also said that it would take 2-3 yrs, and that I would feel worse than I do now for about a yr; most of her patients on pred had quit because they just couldn't hang. She didn't think IVs would do any better than pills. Finally I told her that I had to at least give it a try, if I continue down my present path I'd be dead in 10 yrs, so she agreed to do it and rx'd minocin and flagyl. She also thinks I have Celiac; I've tested neg for it a couple of times and tried the gluten free diet with no results, but I agreed to try it again and she tested for it again. I really wasn't surprised by the information that this would take 2-3 yrs, just her reticience to even try. With my gut issues, I think IVs are the best way to go, but she really didn't want to go thru the hassle of trying to convince the insurance company to cover it. I left with the feeling that altho she felt bad for me, she didn't expect me to have success with AP. Nothing really to do now but try it and see.

JB, be careful of the Levaquin, it can cause tendon damage and rupture. Many people have had serious side effects from it. If you start having muscle or joint pain, stop it immediately and call your doctor.

[Trudi]

Hi Linda–

I'm glad your safely back and I'm glad you posted.  I've been watching for it!!

It's a bummer that the Dr. didn't give you much encouragement–certainly didn't need that after your long drive.  You are very resilient, not an easy one to give up as seen by your convincing the doctor to prescribe the mino and flagyl anyway!!  Way to go!!  One day at a time–wishing you success!!!!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=11]linda[/user] wrote:

She said she's had only marginal success with patients who had been on prednisone. She also said that it would take 2-3 yrs, and that I would feel worse than I do now for about a yr; most of her patients on pred had quit because they just couldn't hang. She didn't think IVs would do any better than pills.

 

Linda, thanks so much for stopping by to send in an update. I've had you on my mind, too, and was looking for your post.

If it's any comfort (and it may not be as you're just starting again), it's taken 2.5 years for me to be painfree on Lyme protocols and now AP. My first year was pretty challenging to say the least. It hasn't been an easy path and I would be fooling you (and myself) if I said it was. It's been hard-going and taken a lot faith. Truth is, and you know this better than anyone, to continue down the pred path wouldn't be pretty either. At least this “yellow brick road” is more likely to offer a light at the end. 😉 Maybe Dr K didn't take into account what a tough lady you are either!

Mino and flagyl are good tx choices and Dr S, in GA/TN, uses this combination a lot. Flagyl also happens to be a pretty decent Lyme cyst buster and also used for babesia, so if you do have some untreated Lyme issues (in spite of the negative PCR) this would help. Both can produce some pretty good herxing, but sure you're aware of that already.

What doses did Dr K put you on? Is she going nice and low/slow with you to start?

Great job making that long trip!!!!!! You're truly an inspiration, Linda!!!

Peace, Maz

 

 

[linda]

Thanks girls,

Dr.K has started me out on low doses, I haven't picked up the rxs yet, so not sure of the exact dose. The plan is to slowly decrease the pred while increasing the abx. I know this won't be easy, but it is still better than the alternative. Maybe the patients she has seen have not reached the point in their pred therapy that I have, but for me, I just don't have a choice anymore. She did agree that getting off of the pred was more important than getting off the biologic, at least for now.

I'm going to try to find a good acupuncturist, my wonderful doc moved and my self treatment just isn't working. I know I'm going to need help with the herx and really don't have any alternatives that don't involve narcotics. The time needed for this to work does not intimidate me, it's dealing with the pain. There's still time for the enbrel to kick in, it's only been 6 wks, but even if that fails, I just can't see making my kids watch as I continue to go downhill and die young if there's anything I can do to prevent that. So, whatever it takes. Dr. K did say that zith was the wrong choice of abx for me based on my history, so we may get a nice surprise that the mino/flagyl will work better than expected. Either way, it looks like I'm going to be around for a while. But if you need a poster child for proof that abx should be started EARLY before meds like pred become long term and create life threatening side effects (and also trash the immune system), I'm your girl!

[lynnie_sydney]

Dear (G)linda/Dorothy, I so feel for you and so admire your determination in all this. You may have seen the post below. In case not, I'm re-quoting it here in case there's something in it that may help. Lynnie

Hi everyone –  I am pasting a response to this question that I found from our Board from 2006, posted by a very experienced long-term APer who weaned herself off pred after 22 years of taking it! BTW there is some great info on this you can access from the Old Board. Just follow the links that Cheryl has provided in the main menu of this Board. When the Old BOard (which will be blank) comes up, just click on the search function on the left. When this comes up to the right of your screen, type in something like 'prednisone weaning' and a host of questions and responses will come up. Meantime, here is Leslie's post from 2006:

Hi Janie, I was on prednisone for 22 years before AP. It took me 2 years on AP to finally get off that drug. The last 5 mg are the toughest. I dropped about 1/4th mg at a time (used 1 mg tablets to do that). I would stabilize and then drop another 1/4th mg. And so on — it was a longer process but it worked.
Within 2 days of being entirely off prednisone I had an “emergence reaction” that a doctor described as my body realizing there was no more exogenous cortisone and my adrenals had to produce now. It was a very difficult time and I hurt worse that I had ever experienced. But, when it was over, it was like peace had decended upon me and I KNEW I was permanently off that drug.
Have been off prednisone for 7 years now. Hope you can take your time and do it the way you need to. Don't rush this one and be sure to keep your doctor in the loop. I wish you good luck with this tough stage of your road back
Posted by Leslie (sle) AP ~9 years

NB This is the link that will take you to the Old Board
https://www.roadback.org/cgi-bin/eboard30/index.cgi?board=Main

Additionally, you may find helpful this askthedoc article that I found. It goes into  weaning off, how difficult the last 5mg (and below) are and what might help the adrenals at this time.  Link to it is below. Lynnie

http://www.westonaprice.org/askdoctor/steroids.html

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)

[linda]

Thanks Lynnie,

Sounds like an encouraging post, which I could use right now. I guess the thing that has me worried is that all of these AP doctors are so adamant about switching from traditional meds to abx, and Dr. K being one of the most prominent AP doctors is telling me that it's probably not going to work for me. I'm not quitting, but I felt like I had come too late to the game when I left her office. She did give me a schedule to follow in weaning off the pred, but it decreases the dose by 2.5 mg at a time, which seems way too fast to me, I'm going to go a little slower than that. I almost felt like I was being set up to fail, but I know that sounds really paranoid. 2 yrs ago when i was seeing Dr. F in AZ, he was very excited to have me as a patient in his AP research, but when I didn't respond to the therapy, he became very difficult to work with. Looking back I wonder if he wasn't trying to get rid of me because I was messing up his numbers for his research. Not that Dr K is doing that, but I just wasn't feeling the love. Maybe she's getting tired of trying to treat people as sick as me and is getting a little burn out from not seeing those patients improve.

What I need right now is hope, and it's what I didn't get from Dr. K, for whatever reason, so your post is very timely, I really appreciate it. I think Dr K thinks I'm going to quit because many of her patients have – I really can't blame her for feeling that way. I guess I'll just have to renew her faith in AP therapy for patients like myself. I don't think she knows who she is dealing with; I beat vicodin dependence in 4 months as an outpatient, with acupuncture and hydrotherapy, and a great pain specialist. Dr K said it's the weaning from the pred that the patients can't handle; if I can stop taking vicodin, I can stop taking prednisone. Altho, of the 2 , I think it will be much more difficut to stop the pred. I wish she had a little more faith in me and wouldn't pre-judge me based on what previous patients had done.

[lynnie_sydney]

(G)linda/Dorothy – you never know, Dr K may have been using a little reverse psychology on you (it certainly HAS increased your determination) and/or may have just felt it best to lay it all out before you to avoid the 'Pollyanna' type approach to AP that some may start with and which may contribute to their not being able to stick with it. She obviously has had wide experience with people trying to wean off pred and has found that those are the people who find it the AP protocol most difficult and who often quit. However, you are soooo right. What she doesn't (yet) know is YOU. This is obviously going to be a difficult challenge for you, so I'd do this in whatever time frame gives you the least trouble – however long that is. And I'd get as much info as possible re getting those adrenals back to a functioning state. You are one very determined woman and I know that everyone here will be cheering you on and supporting you in whatever way we can. 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)

[Kim]

Linda, Linda, Linda………..to quote my 3-yr old granddaughter, “what are we going to do with you?”  Sorry I didn't respond sooner, but I've been tied up with company.

When I read Lynnie's post, I thought the same thing……wondering if Dr. K. was throwing out a challenge.  You surely saved her a lot of time in telling her everything you've tried and she felt she could get hard core with you.  I do have a little problem with her leaving you feeling disparaged.  Think of all the late-end stages we've seen around here…..LynneG, Dolores, GayG, etc., they were all as sick as you could be and now you can't catch them.  Dr. S. in Iowa told me some stories of his sickest people that are now better, so don't you dare feel hopeless.

I didn't take Flagyl until I started Lyme treatment, and oh man, did it pack a punch.  Once I got over this stuff is going to kill me, it really helped and went deeper than any of the other abx.  Really start low because it can bite you.

If Dr. K. thinks Celiac might be a contributing factor, you are smart to take it very seriously and be 100% compliant.  I was diagnosed in January :angry:, and can't tell any difference at all, which probably means there was extensive gut damage and it will take 6 months or more to heal.  It is totally genetic (if you don't carry the gene, you can't get Celiac).  My sister tested positive, so I tested and mine was positive.  I also had the DNA gene panel run which showed I got the gene from both of my parents meaning that I passed at least one gene on to my kids.  Now, I 've had them both tested and they are both positive.  Their gene panel showed they also got a gene from both of their parents, so I had my husband tested, and now he too, has tested positive.  I can't even tell you the whining I've had to put up with. :headbang:  If you do test positive, there's a chance your kids will have the gene, so you may want to consider having them tested too. Of course, carrying the gene only predisposes you, doesn't mean you have or will get Celiac.

Lastly, I would suggest you dust off your sauna and give it another try.  You have to use it a lot (daily to start) for short sessions and work up.  It will help work the Pred out and ease the burden on your other organs, plus your joints will thank you.  Remember, drink, drink, drink (unfortunately water) before, during and after.

“Team Linda” is behind you all the way…….and remember your Dad's option ……you can always just “walk it off”, right? 😉

Hugs……kim 

[JBJBJB]

[user=11]linda[/user] wrote:

JB, be careful of the Levaquin, it can cause tendon damage and rupture. Many people have had serious side effects from it. If you start having muscle or joint pain, stop it immediately and call your doctor.

Linda,

Sorry to hear your doctor did not want to do IV. Let's hope the minocin will work for now.

Good advice. I am very careful. I heard it could also cause neuro-problems. It's only 10 days. My family doctor did not want to give me another Zithromax IV. Strange thing did happen to me. All my muscles pain went away while I am on Leveguin. I went to Home Depot and got $500 tiles. I could even lift the boxes without any problems. :roll-laugh: I sure hope this will last.

I will go back to minocyclin after I finish my last 4 pills.

JB

 

[linda]

Hmm, dust off the sauna…are you actually suggesting I dust? I suppose I could give it another whirl. I don't know about the reverse psychology, you could be right. I think it was more that she was being honest and trying to prepare me for what is coming. Can't really fault her for that, she has no idea what kind of information new patients have going in to this. I guess I wanted a little more hand holding, but I'm a big girl. I spent the night in Lufkin, so my chi and my kitteh were on their own for a day; I got lots of love and cuddles when I got home. Thank the Lord for loving pets! My son also drove down from Austin to see me (check on me) after my drive.

I do remind myself of the success stories I read here, they do go a long way to give me hope. So don't mind my bad mood, it's mostly exhaustion from the trip. I picked up my rxs, mino 50 mg MWF and flagyl 250 mg MWF. She wrote the rx for minocycline to be filled with minocin or the generic made by Lederle, but what I got was a generic by Teva – is that the same as Lederle?

[Maz]

[user=11]linda[/user] wrote:

She wrote the rx for minocycline to be filled with minocin or the generic made by Lederle, but what I got was a generic by Teva – is that the same as Lederle?

Hi Linda,

Teva and Lederle are different pharmaceutical companies.

Lederle sold brand name Minocin to Wyeth, who then gave manufacturing and distribution rights to Triax in the US and Stiefel in Canada. I think that last move was made in 2006, so Lederle no longer makes brand Minocin. They may well still make generic minocycline, though.

Teva pharmaceuticals are an Israeli company and both Teva and Watson generic minocycline have had the thumbs up from users here. The one generic probably to avoid is Ranbaxy, produced in India, that got bad press by People's Pharmacy after the FDA found is was a sub-standard generic and did not meet criteria for FDA approval.

You could see how you go on the Teva generic and, if after a few months you don't notice any improvements then you could switch out to a different generic or order the brand. The brand (Triax – in a two-toned pea green capsule with one end translucent so you can see the pellets) is very expensive here in the US and most carriers won't cover it unless your physician can wangle a way to make sure you get it with your insurer. That's why a lot of us buy the Stiefel brand from Canada…it runs at $165 for 100 caps. Not bad when you're pulse dosing. I use 6 a week and it lasts 4 months.

Some people find they do better on certain generics…maybe the fillers or dyes in the capsules that cause problems in some folk or could even be the forms that the generics come in…powder in caps or tablet form (possibly with an enteric coating that may contain dye).

Hope this doesn't confuse the issue…it's a bit of a quagmire, but many report doing very well on generics. I was so severe and such a newbie, I didn't want to worry about what was going to work or not, so I just ordered my Stiefel brand Minocin from Canada and have done that ever since.

Peace, Maz

 

 

[Maz]

[user=266]JBJBJB[/user] wrote:

All my muscles pain went away while I am on Leveguin.

 

JB, that's really interesting! Levaquin in being used by Lyme docs to treat the tickborne coinfection bartonella (or what is called “bartonella-like organisms” in Lyme). Interesting that you had success on zith IVs and now levaquin. Zith is used to treat babesiosis in Lyme and also to help combat spirochetal cysts.

Did you ever get tested for Lyme disease and/or coinfections in the end? Here is Dr B's most recent Lyme and coinfection treatment guidelines. If you've never read it, you might find it worthwhile to print out and read – it's 37 pages in PDF format, but there may be something in it that rings bells for you.

http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

So glad you're getting some respite, JB!!!!!

Peace, Maz

PS Levaquin can cause tendon rupture, as Linda mentioned. A friend of mine was given levaquin a couple times for UTIs and within a month of treatment had achilles tendon problems. It doesn't happen to in every case, but at least you're aware to watch for any symptoms during this short course of treatment. 😉 

[linda]

JB, I'm so glad your pain went away, I hope it stays away!

Thanks for the information, Maz. My copay for the minocycline was $5, so I'll try this before I try the Steifel. I hope my tummy holds up, I wish I could've convinced Dr. K that IVs would have been better because of the problems with my stomach. Actually, I went to her because I feel that IVs are the only way I'm going to be able to do this; my rheumy here in S.A. will rx me minocin if I ask, but not IV abx. Anyway, I've been loading up on probiotics in anticipation of this, but I still can't even drink a little bit of soda, with or w/out caffeine. My next appt is in 6 wks, by then I'll know whether I can handle it or not. She is definitely more knowledgeable about AP than my rheumy, so even if she insists on staying with the oral abx I'll make the drive to see her, as long as my tummy holds out. My concern is that I'm going to end up with the same problem as the last time I tried AP, severe stomach pain which forced me to quit not only the abx but also the mobic. I did relate this concern to Dr K, but she wants to try it this way first. I still don't quite understand her decision. It was a very confusing appt to me, but there's no point in doubting right now. I'll just do exactly as she says and go with it.

[Maz]

[user=11]linda[/user] wrote:

My concern is that I'm going to end up with the same problem as the last time I tried AP, severe stomach pain which forced me to quit not only the abx but also the mobic. I did relate this concern to Dr K, but she wants to try it this way first. I still don't quite understand her decision. It was a very confusing appt to me, but there's no point in doubting right now. I'll just do exactly as she says and go with it.

 

Hi Linda,

I don't know why Dr K didn't go with the IVs for you either. 😕 She may want to try this route first and see how you go before jumping into the IVs. I wonder if it might be an insurance thing? I understand that she is supposed to be very good with gut issues and sorting through that whole mess, so I also wonder if she's testing the waters with you to see how you get on first? I guess doctors don't know us from Adam when we first walk through their doors, so they have to familarlise themselves with each case and go from there. 

Linda, let's hope the Enbrel kicks in for you asap so you can get off that demon pred, once and for all, and start working on your gut. Did she suggest anything to coat your stomach or help in that way? I wonder if drinking aloe vera juice might help, but don't want to suggest anything that might interfere with what she is doing either. I'm sure you can't be the first to have stomach probs starting AP, so there have to be some measures that can be taken to avert this. Wasn't it you who mentioned trying deglcerrized (I know I spelled that wrong!) licorice a long while back? If so, did that help you at all?

One thing that might help. Whenever I have started a tetracycline (whether tetracycline, doxycycline or minocin), I've always had a bit of nausea for a few weeks until my body adjusted. It was transitory and passed. I don't want to mess with anything that Dr K told you to do, but I found that eating something (no minerals) with the dose helped to settle and coat my stomach, preventing the nausea. After a while, the nausea was a thing of the past and I could take it on an empty stomach.

I really admire that your decision to just go with the flow on this. It's hard when we are holding expectations of outcomes, but it takes a whole different mindset to let go of expectations and just view life events with a sense of expectancy. Kids are very good at this, but we adults often loose this artform. 

Peace, Maz

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