How do others continue once a month IV’s?

[cavalier]

Iv’s once a week is DEFINITELY the treatment I need but I need to continue to for some time to come & need to see if I can find a way to do so from here rather than going up to Ia. once a month as it is not close. However treatment is not cheap to have the Clindy IV’s shipped to me. Weird thing is this doc can get it covered thru their hospital but if I have it sent to me & have a nurse do the 2 times a day for 5 days once a month – I was told insurance wont pay for it – IS this what others have found?

Depending on what a nurse or doc would charge – cost for the AB IV’s for one week is $450 plus shipping plus whatever the doc’s may charge or a nurse or home health could be as high as $800 a month total for the one week. Ouch! Some home health will do this some wont but was told it will all be borne by us no insurance will cover including medicare.

If I can make a once a month trip up there 14 hr’s by car & expenses there too it is almost the same costs in out of pocket to get there & pay for a place to stay etc plus the hardship of being gone from home one week a month on a ongoing basis if i do that – then Insurance will pay, which I dont quite understand. The Pharmacy that mails out the IV’s said when I asked why insurance wont pay they said insurance wont pay for IV’s only Insulin. Not sure why then insurance pays while at a hospital then. I am going to ask around here if my PCP will order it for me thru the hospital once a month I dunno – Dr. S. said he will write a RX for this IF i can find someone or a group willing to adminster here. He recommended I NOT try to adminster the IV’s myself or my family as he said until my vascular & skin is better – too tricky right now as he said their experienced nurses doing this for 30 some years still had trouble I had 3 different IV sites in one week as 2 blew out.

One thing I was told i was their 1st patient to have continous bitter taste in my mouth 24 hr’s a day during IV’s & still is a little bit there – I had to sleep with gum in my mouth & change it middle of the nite as the taste was so bad – they said in over 30 yr’s they have never had a patient do that only during the IV’s – Doc said it told him it went that deep into my salivary – he felt my gums & jaw bone the IV’s would be able to pentrate any bacteria there. If there is a strep component from Dr Brown’s lab which could now be 3 to 4 months to get back was told maybe one to 2 wk’s but he said only one person there does this still – in Washington DC & waits til there is a stack to be done – but if there is will add in add’l AB to address this. I asked him about many supp’s & also Cannaboid action he had not heard of this was going to look into it but said it could be if proves to stall scar tissue to be a good possible adjunct while addressing bacteria in slowing down the disease.
I get now why so many doc’s recommend useless drugs that insurance will at least cover some are more expensive even but insurance will cover better – makes no sense does it?

i met a long term patient who has RA who went into remission using AB’s she then lost her hubby to cancer & the stress made it flare she made the mistake of using a Rheum who didn’t use AB’s & now is back to Dr S. finally seeing relief now that she is – stress is something to watch but as we all know you cant stop all stress sometimes it is not all in our control.

He was very good I am just trying to figure out how to keep this up without going into a hardship.
I welcome any input –
Jill Systemic SD

[Maz]

@cavalier wrote:

Depending on what a nurse or doc would charge – cost for the AB IV’s for one week is $450 plus shipping plus whatever the doc’s may charge or a nurse or home health could be as high as $800 a month total for the one week. Ouch! Some home health will do this some wont but was told it will all be borne by us no insurance will cover including medicare.

Hi Jill,

So happy to hear your Ida Grove experience was not only a very successful one in terms of your experience of the great Dr. S., but that your IVs were clearly so beneficial to you. 🙂

IMHO, the only way to go with home IVs is to order clindamycin self-infusing bottles from Infuserve America. The cost is half what you describe above. In fact, my order for 16 self-infusing bottles of 900mg clindamycin and all the needed saline and heparin, tubing, etc, as well as shipping came to just a little over $300. My doc inserts the IV line in his office (minimal charge of about $65) and I do the first infusion of the 5 days series in his office (just so I don’t have to drive while the infusion is going in) and then I go home with 9 bottles and enough saline and heparin to do the rest on my own at home. It is a cinch with these bottles, as I can pop them into a pocket and walk around and do what I need to do while they pump in the medicine and they take about 1.5 hours to infuse each. The line on the bottles has a male/female connector that I just screw onto the clave at the end of my 10 inch infusion line and the saline and heparin syringes are just as easily screwed on to the same line. I then just wrap my arm in an ace bandage in-between. The line is easy to pull at the end of the infusion series. I also do two infusions one day a week in-between the monthly 5 day series, hence why I order 16 bottles. For 10, I should imagine the cost would be less than $200 per month.

If Dr. S. would phone through monthly rx’s to Infuserve America, they then could deliver the clindy infusion bottles directly to your house. Infuserve America called me once they received my doc’s rx and I just paid by credit card over the phone and asked if I wanted the order to be sent to my house or to my doctor. I elect for them to be sent to my doctor because he inserts the line for me, but then I take the rest of the order home with me to store in my fridge. The bottles have a shelf life of 32 days if refridgerated.

Walgreens has a home infusion service where nurses come out to insert IV lines. I don’t know, however, if you’d need to order the IVs through them or not. Worth calling to ask?

http://www.walgreenshealth.com/wagclient/consumer/servicesandsupport.jsp?navSelector=Infusion+Services&leftnavpage=is&page=services

Here is the link to Infuserve America. If you click on the ceftriaxone bottle at the top of the page, you’ll see examples of type of self-infusion bottles they prepare and if you scroll down that page you will also find very easy instructions to follow for self-infusions:

http://www.infuserveamerica.com/index_files/AntibioticsInfuserveAmerica.htm

I haven’t even bothered trying to get my IV clindamycin covered by Cigna as they do not recognize this treatment for either RA or chronic Lyme, as it’s a different standard of care. My guess is that Dr. S. is coding these IVs as mycoplasma infection, hence why they are covered by insurance while being infused in-hospital. To have repeat IVs done on a monthly basis, this coding might come into question, as well as not being performed in a hospital setting. You’d probably need to find an open doc locally who would be willing to consult with Dr. S. on the therapy and would be open to coding it for insurance in this way and who may also be able to insert the line for you (so no home nurse would be needed).

I don’t suffer with SD, so I don’t have the vein probs you have to deal with, which would also mean you’d have to find such a doc or an infusion service locally that was adept at finding your veins and ensuring they don’t blow them. Walgreens may fit the bill for you, so hope you can figure something like this out for yourself and that this info helps in some way.

I’ve suffered from night and day sweats very badly for the past year and put it down to perimenopausal hormones. The day I started IV clindy, my sweats disappeared and I have been able to sleep through the night, uninterrupted. While I get an amazing honeymoon period with no RA symptoms at all while doing the infusions, on Day 5, after I stop the infusions, the herx hits like clockwork (aches and pains I thought were long gone make a return for about 48 hours)…though these have been diminishing in intensity with each new round. So, like you, I’ve experienced immense benefit from doing IV clindy and am very pleased, thus far, with the results. 🙂 I clearly had more work to do. And, I am utterly amazed at how simple and relatively inexpensive this process has been…I just needed to find a doctor willing to do this for me.

[cavalier]

Maz – your post was nothing less than amazing in being full of options & info ! – I cant thank you enough!
I will look into these & see. I felt the service from the Ida Grove Pharmacy was a bit high but I had nothing to compare it too.

Am determined to stick with this – so geting some other options to look into really helps – many thanks !!! Jill

[Maz]

@cavalier wrote:

Maz – your post was nothing less than amazing in being full of options & info ! – I cant thank you enough!
I will look into these & see. I felt the service from the Ida Grove Pharmacy was a bit high but I had nothing to compare it too.

Am determined to stick with this – so geting some other options to look into really helps – many thanks !!! Jill

Hi Jill,

Glad the info might help you…fingers crossed! 🙂

I think the difference in cost probably lies in that the hospital has the usual overheads and people don’t mind this cost, knowing they are there for Dr. S.’s experience and TLC. In the case of SDers or anyone who is really unwell, getting the input and reassurances of a doctor like him is invaluable when starting out on the AP road and this is especially important for parents with young children needing the IVs. Also, as you have experienced, those SDer veins can be a real nuisance and his nurses are pretty used to dealing with this and don’t get freaked out. Some SDers might be put off and think the treatment would be impossible for them. Dr. S. is so wonderful to provide free consultations to docs and patients wanting to know and learn about the therapy. My LLMD also consulted him by phone, which helped enormously in his decision to help me as this isn’t a common Lyme treatment (in terms of IV duration and dose).

At least it is good to know that cost-wise this is more do-able and that there are further options for very simple (do-it-yourself) home care once the big trip to Ida Grove has happened and the patient becomes aware of how easy the whole process is. All it really needs is a local doc who is open to consulting Dr.S. and inserting the IV line and ensuring the patient has no allergy to clindamycin (my doc ran the first infusion, but also sent me home with an epi-pen, which is common Lyme doc practice). The rest is a cinch to do the home infusions with an IV self-infusion system and very possible to work this out with a supportive local doc.

Let us know how you get on, Jill…rooting for ya!

[cavalier]

Maz – Many thanks again for the time & dedication you have to helping so many others I can deeply say it is very much appreciated.

I contacted Walgreens am to call them back on Monday and will call Infuserve as well and contact my PCP.
Mainly it is the fact that I saw doc who has had more real time experience with SD than both of my doc’s here have or any of them for that matter & I got confirmation of my lungs & other findings. And Dr. S. will send to Dr Brown’s Lab – to someone there one person who still runs the 4 or 5 specific mycoplasma tests levels – this I feel is important to monitor & again down the road which is what Dr S. mentioned.
He did say that the one woman doc who is mentioned in the Our road back book who also had SD came & went thru his files in Iowa stayed for 6 months – she was comparing to other methods used – stats in following up with patients – she said the biggest thing that stood out was overwhelmingly Dr S.’s patients were still alive & functional as opposed to other treatments who were not or no longer alive. She is also treating patients with this protocol as she knows it worked for her in Calif.

Anyways many thanks Maz- anything that will make this treatment more affordable is a plus.
It maybe the buying power of some of these bigger franchises gets them a lower cost for the IV’s?

Jill

[cavalier]

Forgot to mention – it also is helpful for me to be able to tell my PCP that this treatment truly helped in order to get any buy-in.
Jill

[Maz]

@cavalier wrote:

He did say that the one woman doc who is mentioned in the Our road back book who also had SD came & went thru his files in Iowa stayed for 6 months – she was comparing to other methods used – stats in following up with patients – she said the biggest thing that stood out was overwhelmingly Dr S.’s patients were still alive & functional as opposed to other treatments who were not or no longer alive. She is also treating patients with this protocol as she knows it worked for her in Calif.

It maybe the buying power of some of these bigger franchises gets them a lower cost for the IV’s?

Hi Jill,

I don’t think Infuserve is a mega-franchise like Walgreens, but you are probably right that Walgreen’s is able to branch out into services like this as they are so big. Infuserve is actually a Lyme pharmacy and my guess is that it is one-of-a-kind, set up specifically to assist chronic Lymies with affordable, easy treatment options. Would love to know the back-story of this pharmacy…maybe it’s owner had Lyme? In any case, it’s a terrific option and very grateful that they exist. 🙂

I’ll send you the link to Dr. H’s website in a PM. She co-authored the PANs article with Dr. C, a well-known LLMD, in the following thread (see link in second post):

viewtopic.php?f=1&t=6909

Good luck with your IV researches today!

[cavalier]

Maz – hang onto your pricing at Infuserve – they quoted me what would in total be higher than Ida Grove did for IV Clindy or Cleo – it was without any tubing or needles etc – it was 350 for the IV for 10 alone & extra costs would be the tubing & needles plus shipping – ultimately costing more than Ida Grove’s RX as they included tubing & needles in the same cost.
I didn’t tell them someone else is getting 15 for the same costs – maybe they have a price break point i dont know. They were very nice I told them I was still shopping it, have not heard back yet from Walgreens.
One way or another – am going to continue doing the IV’s the difference is well worth it in energy & quality of life plus indisputable gains in function.
best – Jill

[Maz]

@cavalier wrote:

Maz – hang onto your pricing at Infuserve – they quoted me what would in total be higher than Ida Grove did for IV Clindy or Cleo – it was without any tubing or needles etc – it was 350 for the IV for 10 alone & extra costs would be the tubing & needles plus shipping – ultimately costing more than Ida Grove’s RX as they included tubing & needles in the same cost.
I didn’t tell them someone else is getting 15 for the same costs – maybe they have a price break point i dont know. They were very nice I told them I was still shopping it, have not heard back yet from Walgreens.
One way or another – am going to continue doing the IV’s the difference is well worth it in energy & quality of life plus indisputable gains in function.
best – Jill

??? Wow, Jill, I’m floored! 😯 I wonder if it’s because I am working through a LLMD and these docs have a “special relationship” with Infuserve America? I can only imagine that must be the case, because I got a breakdown of my costs today in an invoice and here are the costs I paid:

*16 Intermate Clindamycin 900mg bottles (100ml 100ml/hour) $144.00
(needed to manufacture above: 1 clindamycin 150mg.ml 60 ml vial $28.15, 6 clindamycin 150mg/ml6 ml vial $33.12, 2 NaCl
0.9% 1000ml $13.94)

*4 Ext 15″ Rymed with Invision Neutral Pressure Clave $16.00

*Postage/Packing: $37.35

*20 saline line access kit (2 saline flush 1 swab cap) $24.00

*20 heparin flush 100 u/ml 5ml in 12ml syringe $12.80

Total: $309.36

That’s everything I need to do these babies at home after doc inserts the line with neutral pressure clave. What you’ve been quoted doesn’t sound anywhere near this. Only difference I can see is that my doc has his own supply of infusion needles/catheters for inserting the line. Gosh, Jill, I’m sorry if this got your hopes up.

Hmmm…let’s see what Walgreen’s quotes for you. ❓ This is a real bummer if only LLMDs get this cost break for their patients. If so, the only real benefit (IMHO) is in the independence of doing it this way without a visiting nurse, but some folk may actually prefer that.

Just read your other thread on the gains you’ve made from doing the 5 day IV series…this is phenomenal and can see why you’re thrilled and want to keep this up. Will you try to do them monthly?

[cavalier]

Maz – Dont be bummed for me – i dont doubt what you told me eithe,r but just want you to appreciate the good deal you are getting. I wonder if they are giving the doc a LLD discount?

I am getting the run around Walgreens still has not quoted a price – they say insurance is giving the delays not sure what that is all about but … I have gotten from 860 as i mentioned without the nurse to 66.66 per day that they will accept from the insurance as full payment with no cost to me even if i have not met my deductible which is wonderful but they will ONLY accept a script from a doc in state – so I need my PCP – another place said they cant quote but if i get a local doc they will quote as they cant set up home health for a nurse without a local doc will accept the out of state doc script for the clindy though.

Yes this will be once a month – may take me the full month to get it ready at this rate – seeing my PCP tomm. will know from there if they will help.

Jill

[notabene]

Jill and Maz – This thread has been invaluable to me as I decide whether to see Dr. S for the IV Clindamycin, as he so kindly suggested to me in an e-mail. My conclusions are that:

1) it is wholly worthwhile to see someone with such breadth and depth of experience with scleroderma and AP,

2) that insurance doesn’t necessarily pay for it, so I can take (small) comfort for having Swiss insurance, which will not cover and Swiss doctors who have never heard of it and give the standard arguments against it, and

3) that IV clindamycin works well during the administration period, but that we can expect a herx. Maz, did you say yours started 5 days (between 4-8 days) after completion, for 48 hours. This will help planning the timing of my flights, but if it’s mostly aches and pains, I can sit in misery on the plane. If it were nausea, I would have to hole up at my son’s (and he can take care of me 🙂 ),

4) is the herx as likely for SDers, since they are less likely to have it while taking minocycline,

5) continuation is my big issue: I cannot see how I could get IV Clindamycin back in Switzerland, and will ask Dr. S. about oral clindamycin. No doubt he has other ideas, since he has treated so many people.

But I must ask the “bottom line” question in my cost-benefit analysis:

6) is the IV Clindamycin sufficiently more effective/faster than just continuing with my mino 100 mg BID to warrant the costs and time?

Thanks to you all.

[Maz]

Hi Notabene,

Will do my best to answer in the number format you provided, although my personal experience is RA with IVs, so this will vary substantially for SDers.

@notabene wrote:

J

1) it is wholly worthwhile to see someone with such breadth and depth of experience with scleroderma and AP,

1. Yes, for SDers who have hard skin and difficulty finding veins, seeing an experienced doctor (or a doctor who ensures experienced nurses are doing the IVs) is ideal. Randy shared a few times how difficult it could be when an inexperienced nurse would jab him over and over trying to find the vein. Otherwise, if no vein probs, it’s no different than inserting any other IV line. The line remains in your arm for 5 days (unless it gets irritated and needs changing half-way),is wrapped in-between IVs, and very easy to attach new IV bag at each session. Bottom line is that unless one has alot of skin hardening, it doesn’t need an experienced doctor to prescribe or administer IVs…just an open doctor. 😉 One of the great benefits of seeing an experienced doctor, like Dr. S., is that he has seen thousands of rheumatic patients for treatment and so can answer many of the burning questions patients may have about the therapy and can put a lot of fears to rest. Everyone comments on how wonderful their trip to see him has been, as he is such compassionate, kindly old country doc.

NB. Drinking lots of water to plump up veins ahead of time can help the nurse to find veins. I have tricky, rolling veins and so I drink a ton before my IVs get installed and it really does help. 😉

2) that insurance doesn’t necessarily pay for it, so I can take (small) comfort for having Swiss insurance, which will not cover and Swiss doctors who have never heard of it and give the standard arguments against it, and

2. Here in the US, Dr. S. gets mycoplasma testing run and will code the IVs for insurance as “infection,” which is perfectly legitimate to do. If a patient is positive, the round of IVs can be covered by insurance, but as antibiotic therapy is considered a different standard of care for rheumatic disease (aside from minocycline as a DMARD for RA), insurances won’t cover it if coded for “rheumatic disease.” The downside is that myco testing can take 3months for results, if done thru TARCI, so maybe Jill can fill in the blanks here on how Dr. S. manages this. Could be that patients pay up-front and then make a claim later when myco tests are returned…not sure about that bit. Nevertheless, for someone coming from abroad, making a claim like this likely wouldn’t apply, so this may be irrelevant to you unless you are able to make claims on Swiss insurance for treatment abroad and that “IV clindamycin for mycoplasma infection” would be covered your end? Maybe something to check with Dr.S. and whether it is worth getting myco testing run so you can make a claim when you return home?

3) that IV clindamycin works well during the administration period, but that we can expect a herx. Maz, did you say yours started 5 days (between 4-8 days) after completion, for 48 hours. This will help planning the timing of my flights, but if it’s mostly aches and pains, I can sit in misery on the plane. If it were nausea, I would have to hole up at my son’s (and he can take care of me 🙂 ),

Yes, my herxing comes in that time frame with each round (weekly) of IVs. However, this is a very individual thing for every patient with RA and is also very different for SDers who often do not herx, at all. Those who do will usually have an overlap with another rheumatic disease that has an inflammatory component, like Jill who has just discovered she also has sarcoidosis, or sometimes as in the case of SDers with Lyme disease.

4) is the herx as likely for SDers, since they are less likely to have it while taking minocycline,

Same as #3…usually SDers don’t herx – at least not like someone with a lot of pre-existing inflammation, but if clindamycin is hitting something in any person’s pathogen load that could create die-off, then herxing is always possible. This is hard to predict ahead of time.

5) continuation is my big issue: I cannot see how I could get IV Clindamycin back in Switzerland, and will ask Dr. S. about oral clindamycin. No doubt he has other ideas, since he has treated so many people.

5. There is an AP Physician who does IV clindamycin and who is just north of London, England, if travel to UK is easier for you. Oral clindamycin, once per week, is an option, or clindamycin IM shots. Oral clindamycin can be tougher on the gut, so one would have to be very careful about maintaining good gut health/balance and ensuring adequate probiotic intake. There are other macrolide abx that make good adjuncts to minocycline, too, like azithromycin or clarithromycin, but am sure Dr.S. would be able to advise best course for your case, Notabene. As you are so early in your disease, he may feel minocycline is sufficient. These are the kinds of questions that are really best answered by Dr. S. and why many go to see him for his expansive experience.

But I must ask the “bottom line” question in my cost-benefit analysis:

6) is the IV Clindamycin sufficiently more effective/faster than just continuing with my mino 100 mg BID to warrant the costs and time?

6. Again, this is a very individual thing (in terms of choice, financial means, and response to IVs) and can be, in some ways, more difficult for SDers who don’t herx to know if IV clindamcyin is worth doing in frequent rounds. Some respond so fast to minocycline alone that they don’t feel the need to do the IVs. Others want to take an aggressive stance and throw whatever they can in the artillery at it. Those who clearly herx with one round of IVs may decide that it should remain a very important part of their future protocol. After you have spoken with Dr. S. and experienced your first round of IVs, you should have a better picture of what your preference will be for future rounds, if you choose to do them.

Please take all of the above as just insight from an RAer who is doing IVs and someone who has observed what SDers have experienced or done here over the past 4 years I have volunteered here. No one can answer these questions better for you than someone who has SD who has been to see Dr. S. So, hopefully others in the same boat will chime in to help you, Notabene. 😉

[notabene]

Maz – Thank you, as always, for your thorough comments. Based on them, and further thinking,

1) Insurance: I will ask for a referral from my specialist doctor, asking my insurance company on Monday if they cover treatment abroad if referred by a Swiss doctor. Although this doctor had not really seen scleroderma before, was not aware of AP, and gave all the standard arguments against it, I might be able to convince him that it is worthwhile for me to see an expert who has seen thousands of rheumatic patients over forty years. Especially since Dr. S. is willing to email patients and doctors. If not, my PCP or a doctor who prescribed a round of antibiotics last summer when a Kenya virus (brought to me by a visitor) turned into a serious secondary bacterial infection (no Raynaud’s and much more flexible hands for the duration of the amoxicillin 😀 ). We’ll see, even if they only cover the doctor’s fees and not the Clindamycin.

2) I’ll ask for a mycoplasma test, although won’t the critters be difficult to find if I have already been on minocycline for 4 months?

3) Thanks, I may ask you for the London doctor’s contact information, although I’ll see first if one of my Swiss doctors would provide.

4) I have never herxed with the mino, although two Tablespoons of coconut oil in my oatmeal brought it on. Stopped that, and haven’t had a problem since. Thus, perhaps I won’t herx with the Clindamycin, especially if I drink the lemon-olive oil detox and the like. If only there were a sauna in Ida Grove.

5) I am relatively early in the disease, but my email from Dr. S. stated “It sounds as if you have had great success with Minocycline 100 mg. twice, daily and I would urge you to continue on that indefinitely. If possible, I would like to see you get a series of IV Clindamycin. That would require you coming here for treatment.”

Although my symptoms seem low and slow in developing (perhaps heavy denial and/or high threshold of pain), my blood tests might suggest otherwise to an expert eye:

January 2011 results
Ac anti-nucleaires: 2,560 (should be <160)
Ac anti-nucleoproteines, depistages: 24 (should be <1.0)
Ac anti-Scl 70 (FIA): >100 (should be <10.0)
Facteur rhumatoide IgM: 39 (should be <20)

March 2011 results
S-nucleaires, anticorps, anti-, IgG: >5,000 (should be <80): Aspect 1: Homogene
S-nucleoproteines Scl70, anticorps anti-, IgG: 232 (should be <20)
S-anti-nucleoproteines depistages, anticorp anti-, IgG: 97 (should be <20)
S-facteur rhumatoide fraction IgM: 42 (should be <6)

So, I think I will be off to Ida Grove, by hook or by crook. Phew – decided! I will post my experiences as Jill has so usefully done.

Thanks for the informed and sympathetic ear.

And, I keep forgetting to sign with my real name – Nancy (B, hence NB: notabene)

[cavalier]

Nancy
& et all — sorry didn’t see this one so chiming in late as to some ?s you had.

I was on Minocycline BID EVERY day no days off at all for 4 months while this helped my raynaulds & did some skin softening a little – it was the IV’s that really jump started the core SD issues & the sarcoidosis. I regained mouth moisture & eye moisture my skin is able to sweat better – all from the IV’s & I started getting my phrenic nerve working with the start of the IV’s. It is felt by Dr S. that patients who have SD while mino daily is a important thing to try to slow the disease that the IV’s are a important part in making progress sooner is important due to the damage & risks to organs.

As to finding the critters in checking the mycoplasma test – I asked Dr S. this – the test is not measuring the level of disease but the antibodies he said there will be enuf evidence there for him to submit to insurance.

Walgreens with insurance coverage was EXACTLY the same cost as getting from Ida Grove Pharm without insurance go figure ! And Walgreens Infusion service were still not able to quote as of yet the nurse fees – my PCP said they will use the hospital here – but I dont know yet as to where that puts me for costs – have to call to insurance again on Monday to see if i can find out – I need to start the IV’s this coming Thurs – already one month has gone by – been working on this since i got back but companies & such just dont move very fast in getting answers. best – Jill

[notabene]

Thanks for the reply Jill. We have been on mino about the same length of time, so it’s good to hear you say that Clindamycin is useful in speeding up the treatment. Anything to prevent organ damage is crucial.

When were your diagnosed with sarcoidosis – in Ida Grove? It is related to your iritis (correct? it’s on your other thread)?

The trip is affordable, but it just annoys me to have to pay double – monthly health insurance in Switzerland and then out-of-pocket. We’ll see, maybe my insurance company will allow. I’ll ask them about 1) seeing a doctor with forty years of experience and thousands of patients with this rare disease rarely seen in Switzerland, and 2) coverage of using “IV clindamycin for mycoplasma infection,” as Maz suggested. Then the mycoplasma test makes sense.

Best of luck with your insurance and your eyes – I hope they are getting better.

Nancy

[Author]

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