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Am heading out for my 1st week of AP IV’s –
to Dr S.It’s been a long hard journey just to get this far. to now have a lifeline of hope, but realizing the fight is not over – but there is at least a end in sight.
Thanks for all of the help in making this beginning become a reality – Jill
Systemic SD is my primary issue, some lung involvement, esphogeal diverticultis, GI malabsorption, skin, Raynauds, sjogrens, asthma, joint arthritis & destruction bone on bone on both knees, inflammatory markers, Migraines, arteriosclerosis, but had early markers i never was told were autoimmune – endometrious, and a immune that seems to catch every darn virus or bug out there often multiple times – shingles, parvoB16, sinus infections, MRSA – but ya know what so far I have been blessed while struggIing to get answers – i have survived to get this far – in the nick of time. Which is why i call myself & many of us Timex’s – if you remember they used to say Timex takes a licking but keeps on ticking. It’s time for the lickings though to stop.Hi Jill,
Good luck and wishing you the best on your visit with Dr. S. I’m sure you will be on a path to wellness soon. We’ve all heard wonderful things about Dr. S. Be sure and let us fellow SDer’s know how it goes.
Laurie
Today is day 2 of IV’s. We both feel Dr S. is very much well versed & seen plenty of cases – I feel very blessed & encouraged – am surprised to see some shifts in small improvements. Time will tell of course but am def. on the right path.
Dr S. agrees with me in that the lungs the scarring & ground glass is from the SD – I showed him the CT report with the findings. I told him it seemed unlikely that i have 2 different labs confirming SD on SCL70 positive but somehow I am to believe the lung findings are something else. He smiled when I said if it sounds like a duck & looks like one then most likely is. He was saddened to know I had 2 different surgeries cutting into dense fibrotic scar tissue some of this was different than the 1st & neither doc tested the scar tissue they removed. And that neither doc thought of possible SD. Dr S. said the worst thing is to cut into SD scar tissue as it only makes it worse. this explains alot of how fast & agressive these areas has been.
He is very dedicated and down to earth but very much knows this arena. Today I am fasting & will do the blood work this AM- we will discuss this before i leave.
There is BTW no pic line – it is done in a vein in the arm or hands – I had no good access vein in either arm the vascular has been hard hit by SD – this is the cause of my migraines too we feel since the vascular is so down. They tried the right hand – but it blew, am using the left hand it is left in – hope it can make it thru.The Guest House on Dr S.’s site is where we are staying at – a full house for less than a hotel – wonderful in good condition arts & crafts home – only 5 to 6 miles very short drive to the hospital.
Everyone here is very friendly & do not treat you as a stranger. I am from the MidWest & it sure makes me miss it despite the winters – which this one is very mild.Am at peace with this – it was given alot of thought & for sure is a good thing –
JillHi Jill–
Thanks for taking the time to give us an update. I was wondering how you were doing.
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?
We started the 1st IV at 600 mg’s clindy – but the 2nd was immed. bumped up to 900 mg’s & has been there since. On thurs I am to squeeze in 3 IV’s & not sure what the plan is for Friday but will see Dr S then & go from there.
Am breathing easier which is a huge plus & so nice – 1st thing I noticed is my eyes are more moist & then my skin but not wheezing just sitting & moving is easier – I can tell though as the time gets close for the 2nd IV – that it is needed. Headaches are a little less intense. Circulation is improved so seem to be really responding.
lovely town if one likes smaller towns I do – people are great.
Will find out the ongoing plan more on Friday.
Best – Jill – Systemic SD, Sjogrens & Raynauds 2ndary/
Oh i know any improvements are from these IV’s I stopped Plaquenil in Feb. after 6 months did nothing for me – am not one to take a drug if there is no benefit – I only got worse while on it so showed me it did nothing to stall the SD.
I talked to Dr S. about that – he said never seen any patient with SD helped by Plaquenil so he agreed with my decision to stop.
My labs for the specific mycoplasma (they are checking for 3 or 4 of them is going to Dr Browns lab still running one of the best in the country for determining this – wont have that back before I leave.
Dr S. does feel Vit E & C wont hurt & can help so approves of my continued use of those.
Jill
OH – So far am tolerating the IV’s well for anyone who maybe wondering – if they have not done them as of yet.
Have had a reduction in pain not gone but stll less more tolerable.
JillStomach is a bit queasy but not suprised – am taking my share of probiotics. I did blow out the IV vein today also not a shock – as this is what my veins have been doing – they did get however my r. arm which is encouraging as no one meaning sev’l have been able to get a vein to stick in my R. arm for the last couple of yr’s & they did today so this is encouraging.
other than my stomach i feel pretty good better than I have felt in some years so def. agreeing with me less pain breathing is better.Jill
Back home tired from such a long trip but definitely worth it!
I just got back home early today so am on car lag from Iowa.
Dr S. feels that there is a genetic defect in the immune system that I was born with – that over time could no longer function as well that the mycoplasmas that we all have my immune could no longer control & infection got out of hand. He says once my immune can take back over and I can keep stress down not always easy to do in life, but until then I am to continue with IV’s once a month & Minoc. 100 mg’s BID every day other than the one week on IV Clindy. He said food allergies, finding what supp’s every person is different in finding what helps and what to avoid.
This is 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! If I can make a once a month trip up there 14 hr’s by car & expenses there too – 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.
My gains in one week VS 3 1/2 months of Mino BID daily 200 mg’s total – were huge –
Eyes & mouth normal moisture again, skin more moist, & um female area, able to sweat again, bladder empties completely again, breathing a bit easier, not snoring at nite, hurt less especially in shoulder pain, neck pain, migraines lessened both in frequency & intensity, circulation improved in legs & feet – legs vascular dont hurt nearly as bad – it was pretty stout pain. Hand color is better & face has color again so def. circulation impacted which is the cornerstone of part of the destruction that is with SD. Fingers & wrists & knees don’t hurt as much. Breathing is easier most of the time. BP is coming down as the vascular is helped – to me only makes sense. I feel more put together not a body racked with pain. That is a HUGE gain I had no anticipation of this much I just had a open mind & felt let’s see what happens – but it is amazing so much i was told was just old age but I always felt in my case that SD was at the heart of things – i felt we shall see. I had no idea I was going to respond this much in one week but it goes to show you what taking good care of the body what it CAN do IF it can ONLY get the RIGHT help. This was for me CLEAR confirmation that this is WHAT my body needs.I hope this is of help & encouragement for others. NOW for me the next fight is HOW to continue to get this treatment as it maybe needed for awhile without breaking the bank or stalling hub’s retirement – he is already talking of us needing to sell the house for me to continue to get treatments but in a slow market that may not happen very fast. Any suggestions how others got continued IV care is appreciated ! And how one got insurance to pay or how they did this.
i now get why so many doc’s push the drugs that dont work as they can get those even more expensive drugs paid by insurance.Thanks Jill Systemic SD, Sjogrens & Raynauds – the last 2 are definitely falling away due to the IV’s impact.
Jill,
I’m so happy for you! I wish you the best with your continuing treatment.
I hope to see Dr. S. when I’m in the US in April-May. Your advice welcome.
Nancy
Dr S. firmly believes (as do some other doc’s) in the IV push for SD patients to really start to kick the SD back – it gives a extra push that would take too long with just Minocylcine on it’s own – a luxury that many SD patients dont have is to wait.
If you can get there i encourage you to do so. I also recommend the Guest house in Arthur Ia. listed on Dr S’s website for accomodations close & reasonable & sure is nice having a home to wander around in for a week vs one single hotel room.
Dr S. has alot of experience & uses a very good lab in sending the blood off too to check for 6 specific types of infection.
That edge was nothing short of amazing for me in what it did for me – which goes to show if the right thing is finally given what then the body can do. I need to continue on this route.Best – Jill
Oh my diaphragm has been fluttering for the last few days – in coming back the muscle – it was wrapped and nerves in scar tissue – it has been paralyzed & documented in SNIFF tests and phrenic nerve EMG’s since 09 as being so – nothing has been able to restore it’s function – then I go & do a 5 day course of Clindamyacin IV & my eyes which have been so dry were the 1st thing to come back the last so far from this course has been after I got home is this diaphragm – I know this works!
My gains in one week VS 3 1/2 months of Mino BID daily 200 mg’s total – were huge –
Eyes & mouth normal moisture again, skin more moist, & um female area, able to sweat again, bladder empties completely again, breathing a bit easier, not snoring at nite, hurt less especially in shoulder pain, neck pain, migraines lessened both in frequency & intensity, circulation improved in legs & feet – legs vascular dont hurt nearly as bad – it was pretty stout pain. Hand color is better & face has color again so def. circulation impacted which is the cornerstone of part of the destruction that is with SD. Fingers & wrists & knees don’t hurt as much. Breathing is easier most of the time. BP is coming down as the vascular is helped my bottom number has dropped by 20 points ! to me only makes sense knowing what SD does to the vascular. I feel more put together not a body racked with pain. That is a HUGE gain I had no anticipation of this much I just had a open mind & felt let’s see what happens – but it is amazing so much i was told was just old age but I always felt in my case that SD was at the heart of things – i felt we shall see. I had no idea I was going to respond this much in one week but it goes to show you what taking good care of the body what it CAN do IF it can ONLY get the RIGHT help. This was for me CLEAR confirmation that this is WHAT my body needs.
But getting my diaphragm to start to work is well – I cant even put words to how I feel – as i was getting the start of SD into my right lung – I knew if I cant stop this what I had lost already with my left lung and I felt literally like i was being choked off inside like a garden being choked off by weeds.
None of the doc’s here or anywhere I have gone too including the 2 Rheumies have given me any gains & here I get gains in one week that months & years of seeing doc’s have not been able to do ! The only thing I did was do Clindamyacin IV’s & I know the gain is from this as I was not taking anything else or doing anything else new.
Jill
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