Things continue to evolve

[cavalier]

I hope everyone had a good Thanksgiving.

I got tested for CPn & it shows supiciously raised Dr C. says the Doxy should address this as we hit the Lyme. My insurance will only pay for IV’s for one month. I am still looking for somewhere for after that as 3 ABX by IV will cost 3,200 a month. Am addressing with Chinese Herbs too and Dr C. sent me a couple links to look into as well.
It appears according to Vanderbilt I am still positive for SD – on a positive SCL 70 test – which NW came up with a negative.

I went to Vandy last week for the Pulmonologist for the PVH I have Pulmonary Venous Hypertension this is all this doc handles.
I got a update on the labs today, one I was sort of prepared for mentally but … I wish I had sort of kept quiet as I wondered as some time went on if I was really in remission

[laurawm]

Hey Jill,

I’ve been meaning to respond to this for days – sorry. I know what you mean feeling like it’s hard trying to keep up with everything. By CPn you mean chlamydia pneumoniae? Did you have your IgG antibodies tested or also IgM? I have raised antibodies to CPn, mycoplasma, candida, not Lyme, but other positive non-antibody tests. In the end, all bacteria die off in the system of an autoimmune patient is a difficult activity. There needs to to be a turn off switch for the autoimmune gene and then treating all these bugs might not be quite so crazy – though I know neurological Lyme is difficult regardless. It would seem like the SD tests might fluctuate some as you treat the Lyme depending on herxing and cyclical disease activity.

Here’s to feeling better next year. I just ordered and an infrared sauna – hope it helps.

Best to you, Jill.

Laura

[marypart]

Jill,
My son was on IV abx for about 4 months, and the insurance only approved the first about six weeks.
After that, the doctor rxd the vials, I got them from CVS like any other medicine, and we took them to her office where the nurses in the iv room mixed it up in the bags, which we refirgerated. Enough for one week prepared at a time.

Our prescription drug benefit covered the meds, we paid I think a hundred dollars for them to mix up the bags. Then once a week we paid for the nursing care of the picc line site– also in the docs office, in her IV room.

Funny thing, we actually got billed for about $1200 for home health that the insurance company wouldn’t pay for– that was before we went to the above plan–it might have been week 5 and 6. Anyway, at the end of the year when we were way over the amounts for “major medical” I sent in that receipt and they paid me back.

Good luck.
mary

[cavalier]

Mary – Hi tx for the info but i am confused you said you got the Prescription vials from CVS & then had the nurses mix this into bags – are you saying you used AP tablets or capsules & then had a nurse mix this into IV form? Sorry i am very fuzzy this AM my brain is more than 1/2 gone.
I just want to be sure I am understanding this correctly.

Tx – Jill Lyme SD & CPn

[cavalier]

Laura – yes CPn is C. pneumoniae. Both levels were tested and yes I am sure SD levels will vary – as a matter of fact the Pulmonologist who treat PVH, PAH & SD told me that Vanderbilt does not care what the levels show for SD, just if you are positive or negative as the disease activity does not always match the levels found. The CPn may explain some of my lung issues.
Hope you enjoy the Sauna.

Mary I hope you see my message below this one in regard to the ABX question once insurance was expired. Tx.

Jill Lyme, SD & CPn

[Suzanne]

I think some of physicians associated with this site are from Vanderbilt, aren’t they?

http://www.cpnhelp.org/home

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[cavalier]

Yes some of them are Suzanne I have seen that link too. Vandy is pretty good at what they do so I am pleased to have them in my corner. It is Dr C. who agreed to test me for the CPn as i knew from researching this that it could be involved with some of my issues. Dr S. in Iowa I asked for him to test for this he said normally he requests it but for some reason it was not tested when I got my test results back so I got Dr C. to test me for this.

Good news is Infuserve America which Maz uses is who can help me cut costs to get the same thing for much less. Cost for one ABX over 4 or 5 days period in a week in one month could be $400 or less, that seemed doable. But I am looking for ABX for 4 days a week for 4 wks in a month of 2 times a day for Flagyl, Doxy & Rocephin one quoted me $3,200 after insurance discount, which is what Home Health Solutions is charging for one month of 3 ABX

[Maz]

Jill, this is GREAT news! I hope that now you can get on the IVs, you’ll begin to reverse your symptoms and get on track in short order. Your persistence and strength of spirit has been what has got you to this point…you’re just someone who never gives up and it shows in all your posts. So happy for you and still keeping my fingers and toes crossed for you. 🙂

PS Just goes to show what immense profit margins these other companies are making, eh?

[cavalier]

Indeed Maz ! If not for my having this discount I would not be able to pull this off.

best – Jill Lyme, SD & CPn

[marypart]

Jill,
The prescription is for little vials that have powder or liquid antibiotic in them. Each vial is used to mix up with saline for one IV bag. I picked up the vials from CVS (or any pharmacy you use) and then took the vials to the IV room where they mixed up the bags. We took home a week’s worth of prepared bags and put them in the fridge.

Mary

[cavalier]

Unbelievable that Home Solutions is advising me that no nursing service now will adminster IV’s without the doc’s order coming from a doc in the same state as I am in – as of this summer they would accept a doc’s order from a doc in a state that touches TN. I just talked to Dr. C. about all of this mess – he likes the idea of Home Solutions being able to do the labs needed every 2 wk’s while on 3 ABX IV’s to check and using nursing service to be sure everything is done he is not comfortable with my doing IV’s myself in case there was a problem.

He is licensed in TN as well as Ms. but he says he works & lives in Ms. & he is not sure if that is misrepresenting himself if he uses his TN license for nursing services here. I will leave that up to him & Home Solutions to figure that out. Meantime he & I had to regroup as to a plan again.

The new plan is Dr C. is going to use InfuServe to order Penicillin shots I can give to myself twice a week they are 2 ML & they will burn he said – then we will use Doxy by mouth which is what I am doing still, and Plaquenil by mouth l hope I can handle this without muscle issues which occured after some time before but for now I dont feel I have much choice to cover all 3 aspects of the Lyme.
Costs for 5 wk’s of Penicillin shots he says are expensive – I called to InfuServe wil cost me $616.00 plus 45 to 60 for shipping overnite refrigerated for 5 wk’s supply that’s plenty but it avoids the issue of my having to self pay for a PICC line & the nursing issue as listed above. I can then come to him to get blood tested in one to 2 months time.

At least I will cover all 3 aspects & this is a rounded approach & gets around as long as my stomach can handle it – which maybe a issue as I am still having ongoing problems with my stomach despite med’s i am being given for it. I tossed my cookies most of the day on Sat. loosing my BP med & Doxy & everything else in my stomach. I have not taken Doxy on Sunday due to that & I hope i can get by with it today as it is very touchy still.

Dr C. mentioned a doc’s name in Lyme who says you can get there very well with Penicillin shots I had read the same thing as long as you cover the other 2 aspects still, i just cant think of his name.
Hopefully today InfuServe will call for my CC # . The rules in this state for nursing care is just nuts being so stringent to eliminate any touching state now – this must have changed not for the better from earlier this year – forget that people are sick & getting worse, just make it more difficult.

Anyways that is where this is at. i sure hope i can get on this soon!
I have severe stomach involvment now & PVH along with my esphogaus ( spelling) is with dysmotility and my lungs are getting worse not better probably due to scarring or the PVH or a bit of both and arterosclerosis.

I appreciate Dr C. not giving up despite these legal issues in finding a way.

Jill Lyme, SD & CPn

[cavalier]

Well turns out costs are higher yet as Dr C wants the 2.4 Mil unit Penicillin IM shots not the 1.2 so costs are 1,263.04 for 5 wk’s supply plus 50 for overnite shipping and 50 for the cream to numb up the skin to help prevent the burn which should last for 4 months the cream.

I am impressed that InfuServe wont charge my CC without calling me for a OK 1st before resending out another 5 wk’s supply. If I can tritrate down after a point I will pay about 1/2 of this cost for the lower dosage. But if it starts to help it will be worth that & more!

I should have this by Weds. I just hope I am going to be able to take this med & no allergic reactions. Pharmacist said I can take a probiotic at any time as I dont have to wait as the ABX is not going by stomach – is this what others have been told as well for IV’s?

Merry Christmas to me quite a expensive present but better health is worth it.

Jill SD, Lyme & CPn

[cavalier]

Dr S. in Iowa is upping my zithromax to 500 mg’s from 250 mg’s. I had experimented with doubling my dosage to see if my stomach would respond & it showed me improvement. I reported to Dr S. who agreed to up my dose due to my SD causing stomach malabsorption.

I asked him some other questions if we should add in trialing the minocycline again or if i can do clindamycin by IM injection. Will see what he responds with.

He said I tested negative for strep by the way when i came there.

I dont know if zith can be combined with minocycline or not i seem to remember something about that but cant remember for sure.

Jill SD, Lyme & CPn

[Maz]

@cavalier wrote:

I dont know if zith can be combined with minocycline or not i seem to remember something about that but cant remember for sure.

Yes, minocycline and azithromycin make an excellent combination. Shouldn’t use a penicillin with a tetracycline, however. My LLMD would not use bicillin IM (bacteriocidal) alongside oral mino or doxy. Instead he rx’d diflucan BID with bicillin IM to prevent candida overgrowth and also as a borrelial cyst-buster (penicillins drive cell-walled forms into cystic forms). Additionally, diflucan shouldn’t be used alongside macrolides, as these are P450 cytochrome inhibitors (hence, increased toxicity issues as P450 cytochrome is a major detox pathway in the liver). Anything that is a P450 inhibitor (such as, macrolide abx or diflucan) shouldn’t be used with anything containing grapefruit, including grapefruit seed extract or grapefruit seed, for example, for this reason.

Hope this helps, Jill.

[cavalier]

Tx Maz !

I am on the Bicillin IM 2.4 twice a week 4 days apart. Dr C. wanted me on doxy by mouth & PlaqueniI daily he wants one from each category to work on the Lyme.

I tried staying on Doxy but it’s so hard on my stomach so I am using still the Zithromax I was on 250 mg’s M W & F but my stomach was still bothering me so i felt let’s see if I move up if my stomach gets worse or better – I found going to 500 mg’s I felt better – so instead of Doxy – I got better stomach relief if I upped the Zith to 500 mg’s on those days.

Dr S. Oked my going up on the Zith to 500 mg’s MW & F to get past my stomach which is not absorbing due to malabsorption due to the SD probably getting worse. I told Dr S. I am on Bicillin IM. I would like to add in Minocycline instead of Doxy as it crosses into the CNS better than doxy.

So if they agree I would be on Bicilin twice a week by injection – M,W,& F is Zithromax 500 mg’s, Tues & Sat is Bicillin Injection IM 2.4 MIL, Plaquenil 200 mg’s twice a day every day, Minocycline 100 mg’s twice a day how many days I am not sure, but I am thinking this should be daily other than Tues & Sat. LDN 9.0 mg’s every nite with Melatonin 30 mgs & a good probiotic I take this before bed. I am not sure of this combination but if Dr C. was OK with Doxy then possibly I could add in Mino. in it’s place?

I asked Dr S. about the Clindamycin IM injections if he would write a sript for this, but he has not addressed this question yet so this is why I am wanting to see if I could not take then both mino & Zith & then do the Bicillin along with the Plaquenil.
My concern is my circulation and increasing stiffening for my arteries, in wanting to see if I cant take the minocycline again. The Zithromax does not seem to have kept my SD from progressing. I tried taking the mino today with the Zith I seemed to have gotten a Herx reaction which I have not been getting at all while on Zith.

I know there is mixed reactions of using Bicillin IM some say it will only drive the lyme deeper into cyst form others say yes the one ILAD doc says yes but you have to use a cyst buster & a L form which is what Dr C. wants to go after all forms.
Have had a tough time but i am encouraged feeling my blood moving with just one addition of the mino today.
I am breathing a little easier as well. I just hope I can handle it.

Welcome input.
Jill SD, Lyme & CPn

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