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No my Nurse practioner suspected when I saw her just b/4 I left for Ida Grove – I had no idea she was checking for this in my blood work she ran this test along with other things i knew about – in a way am glad I didn’t know as it was hard news but does explain the other symptoms that d/n fit into SD box – so now I know – I found out when I got back the results came one day later after I went to the eye doc for the pain in my eyes so it all fit of the Sarcoidosis high ACE test.
I was pleased with the mino but for me while I waited to make it to Ida Grove – I had some delays a pup who got sick etc – kept me home longer than I wanted too but was on the mino twice daily while doing that my numbers continued to climb for inflammation so I felt that was telling too – again his advice was something as stubborn & progressive as SD can be to get a jump start by the IV’s & there is a time element that the IV’s can really make a difference in getting a jump start. I have to say I fully agree with Dr S. in this & it is just the God’s truth so while I hate you have the expense & I do too – it has become a must have staple in my mind to continue the IV’s monthly somehow.
The same treatment Dr S. says helps Sarcoidosis – He did write me back in regard to the IV question I had but didn’t address my eyes if there was anything more I could do.
Best – Jill
My 30 days when I started my IV’s in Ida Grove are up this Thurs. & is time for me to start IV’s – thought my PCP was on board but they are wanting a outline from Dr. S. in addition too a prescription. So I sit I can get the medicine sent to me but cant find so far any nursing service to adminster without a local doc’s order – they wont accept a out of state doc.
Going to Ida Grove once a month with hubby working down here is not affordable nor really doable – without being a hardship on all.
So I sit I find something that works & get caught up in red tape – the local doc says they would be ultimately responsible as their order so they want more documentation or to speak with him they have called a few times but have not connected. I brought in documentation from other doc’s but they want his outline. I asked Dr. S. if he could call them via eml.Am sending up prayers to the above to move this obstacle.
Jill Systemic SD & …I have insurance approved for the IV’s & the home health & pharmacy but there is a stall as the nurses say state law that needs the prescription to be written in our state or a state that touches ours by a doctor. Iowa does not touch Tn.
I contacted one doc who will write the order if he can talk to Dr S. but their schedules conflict so they asked for Dr. S. to call him & I relayed that request but after a couple of weeks of nothing happening there.I went to a different doc here in hopes of getting something done sooner than later if at all. The 2nd doc needs the doctor’s notes from Dr. S. so there is more backing for insurance in their files in case insurance gets squeamish all of a sudden over time. I asked Dr S. for this thinking this is easier than him having to take the time to call a doc, he can fax it or mail it to me, but we are still in a waiting mode.
I am late in getting my 2nd IV – it remains at this point a stalemate. Meantime besides battling my eyes – i have a new onset Vulvar Vestibulitis which my gyne says is definitely connected to autoimmune seen he said in other Scleroderma patients.
I just dont understand I am not holding obviously I need the stronger IV the daily mino is not enuf to hold off progression my hands have gotten worse & my skin as well & yet i cant get anything done despite having everything ready to go.
I am looking even at LDN if it can help as I am on hold & I may have to consider both even for a bit – I cant find a doc willing to order LDN as of yet either. If this was just something like the flu or I was even stable where I am at – I could afford to be more patient.
I just dont understand and I sit here wondering what I can do I have asked a couple of nurses if they could do this on the side but no takers- tricky veins dont make for a self admin at this time.Jill Systemic SD
Hi Jill–
I’m so sorry to read you are having such difficulties getting treatment. I will keep you in my prayers.Take care,
TrudiLyme/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?
Hi,
I was having the same dilema and discovered a possible solution. I called a home health nurse and she referred me to an infusion center. The particular one she referred me to was one through Walgreen’s pharmacy here in Indianapolis. It was the only place my insurance would cover other than Dr. Sinnott in Iowa. Hope this helps.Many thanks Trudi!
I was reading about a russian med can be gotten without a RX – called cycloferon been used over in Russia for many decades now with no side affects and I can find azithromyacin & biaxin without the need for a RX I dont seem to be gaining much or holding stable which I dont expect overnite changes from mino but I dont like new symptoms coming forward either, so I am looking at these 2 in consideration of taking them orally for the 5 days in upping the game plan once a month if i cant get any movement on the IV still in one week as I am delayed in getting my 2nd IV now. I am also looking into since I may have to go with a adjusted plan if I cant still get the doc’s to cooperate on the IV’s then also adding in LDN in order to get my immune to get on track.
I put a link on the russian med below my interest is the immune modulation & antibacterial action.
Influence of cycloferon on the biological properties of bacterial intracellular pathogens].- http://www.ncbi.nlm.nih.gov/pubmed/16028504
All the best – JillDr S’s wife sent me a short note to say they are out of town & when they get back will fax over my progress notes that the 2nd doc I saw is asking for – for insurance backup in order for him to order out the IV for me.
So maybe we can get this ball rolling again- Jill systemic SD
I got the progress notes from Dr S’s office – I am not sure if this will be enuf to convince the doc’s here though – it seems like the doc’s here want to pass the buck. Meantime due to the delays here in Tn. Dr S is writing me a script for Zithromax 250 mg’s to take Tues & Sat. the rest of the week to take the minocycline – at least he cares & he has been helpful. God bless him & his wife.
I have not remained stable on just the minocycline have 3 new serious symptoms associated with SD my doc’s here have stated that have serious reprocussions if not able to get this inflammation down.Jill Systemic SD
Hi the problem is the local doc’s so far have been slow to support even with Dr S’s info & backing. If my veins were in a better spot i could run the IV’s myself – but my veins blew 3 times while in Ida Grove for the 5 days – this is why I need a nurse to admin. for now – all of the home health care nurses by state law must have a doc’s RX from a doc in Tn or a state touching our borders which Ia. is not – thus they cant adminster without a local doc – been to 2 of em in asking.
Anyways this is why I am getting the zithromax from Dr S. to pulse in til we can at least get somewhere here- thank God he is willing to help – or I would be in a deep pickle.
Tx’s
Jill@cavalier wrote:
all of the home health care nurses by state law must have a doc’s RX from a doc in Tn or a state touching our borders which Ia. is not – thus they cant adminster without a local doc – been to 2 of em in asking.
Jill, this may sound like a really silly question at this stage, but did you try either of the AP docs that RBF has listed for TN?
Dr.S. in Iowa is bound to know Dr. S. in TN/GA who is one of the most experienced AP docs in the south. 😉 I know he is hard to get in to see, but have you tried emailing this doc to see if he would re-write Dr. S.’s IV script for you?
Another suggestion would be to email the Tickborne Diseases Alliance (used to be Turn the Corner Fdn) to ask if they have any new LLMDs on their list for TN who may also work with you.
http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional
The doc in Chattanooga I contacted before I contacted Dr S. last fall – all of the southern doc’s would only prescribe oral AP – no IV’s so i never thought to call his office recently to ask if he would consider rewriting Dr S’s order. I can get the Clindy from Ida Grove’s RX albeit costly due to they said they dont have any luck with insurance paying so would be like 350 or so a month – the issue has been getting a nurse to adminster & this is where I need a local doc. Dr S. in Ia. has gone out of his way calling & sending progress notes – so the delay & frustration is here in Memphis. You have a excellent idea Maz – as always!
I have to look for Dr S’s # in Chattanooga & can give it a try. Meantime i am to pulse in the Zith. Tues & Sat – 250 mg’s those 2 days every week & use the mino in between. The biggest obstacle is that doc’s here dont like the idea of keeping me on AP for a year or 2 or more. Their concern one who has infectious disease experience with WHO organization when he practiced outside the USA who says infections are always behind SD – so he gets it – but he feels while AP will keep me from getting worse – once I go off he feels eventually it will return – he feels insurance will raise a squawk over home health care for someone who is not housebound if we try to do this for more than one month which we need to do. The one thing this doc says is the Rheumies here are not good – he feels I need a doc with a open mind who he thinks quinines & biologicals is ultimately the answer but he says while he has some training due to the infectious disease he said you need someone who knows exactly the amt’s too little or too much can be bad – he is recommending Mayo’s in rochester not Fl. loc, but he says needs to be someone who realizes this is a infection. He feels the more rounded approach including the diet & GI I am addressing is best – to not put all eggs into only one basket – & have a plan A B & C.
I spoke to a doc who does peptides today he has a SD patient she used a peptide for about a year – he says you know in 3 or 4 if it is helping but he says you need to do Chelation once a week with SD – to have this work. His patient is now done in her 2nd yr now in remission – amazing for her she is in her 80’s – he say her Rheum has never asked her what she did but now is questioning if she ever had SD yet never did before, but now that she is better 😀
He mentioned cykotines & he seemed to know his stuff in taking about the disease – he told me that adrenals tend to be always stressed in SD but this is 2ndary to the SD not primary. In a year there is going to be something coming from Europe that will put more pressure on the states to accept this idea – I am giving broad brush strokes as I never know what might wind up in Big pharma’s lap who is not in favor of this.
I picked up my bioidentical hormones today. For now since I was delayed in getting the IV’s at least thanks to Dr S I have the Zith – although when I mentioned this idea to both the doc’s here they both are willing to prescribe for that ongoing just not the IV’s one says worries of the C Dif & issues with the IV’s even though this is low the other is worried of insurance for home health for a non house bound patient.
Lord teach me patience
Hugs,
JillForgot to mention the reason for the chelation is to eliminate the excess calcium in the veins that SD this doc says happens.
JillHi Jill,
Sounds like you’re getting all your ducks in a row and doing lots or research in a proactive way. I have no doubts you will get well, as you have the “whatever it takes” attitude! You go, girl!
I’ll send you Dr. S’s email address in a PM, because you may have better luck connecting with him in this way than trying to navigate your way through his reception and nursing staff.
Have you thought to ask Dr. S. in Iowa if he would consider using Infuserve America to order the self-infusing pump system for you? If he can work out a special deal with this company, you may be able to get the home IVs more cheaply…the 5 day series costs me just a little over $200. Then, all you’d need is for the doc to install the line and you’d be able to handle the rest at home without home health. Just a thought. Dr. S. may not be aware of the self-infusing pump system, because in a hospital setting they use the bags, as the are less expensive and it’s done on an in-patient basis. I just wonder if you sent him the link what he might say.
Will send that PM now in case it might help…I don’t know if Dr. S. in TN will re-write the script, but anything is worth a try. Sometimes docs are okay about if they don’t have to take direct responsibility for another doc’s rx.
Maz – I think that is the issue that the doc’s here say if they rewrite the script they ultimately are responsible but this doc at least knows Dr S. & his work nothing ventured nothing gained. I came up with the idea of pulsing in Zith. as I felt if i cant get this done then dont let dust continue to collect – doing something more is better than sitting here with nothing – I knew Dr S. would know how best etc. Sometimes you try for Plan A but if there is a problem you have to work around it for now but at least I can keep the ball rolling. Whatever it takes you got it – an determined to make lemonade out of lemons. Much of that comes from my parents who when times got tough rolled up their sleeves & got going they went thru some pretty tough things & I thank god for some of that has helped me. I got a quote from the company you use it was substainally more more than double your cost- we guessed they gave a discount to your LLD perhaps or you are grandfathered in at a lower price.
They mix up their own & used the pump system at Ida Grove.
I maybe doing for a little bit both the Zithromax & minocycline as it may help serve me better in the meantime while I try to peptides for a few months to see if it helps. But that too falls to a nurse I found out today it is into the hip IM but it is just a injection only one time a month not a ongoing series over 5 days. So i am still to finding a nurse who maybe willing to do this for me but less worries for them in vein blowing etc.Best – Jill
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