I have probably had Lyme 4 years, been in treatment 2 1/2 years on orals. All kinds, yes with Flagyl thrown in.
I am really no better now than when I started treatment (have had a couple of good periods, but mostly bad ones).
My doc. up to now has not ordered IV because although I am Neuro, I don't have 'cognitive' issues. My problems are almost all pain related, symmetrical neuropathy, very,very painful. Cannot get rid of it.
I do have Neuro stuff like anxiety, depression, excesive crying & blah, blah, blah.
I am seriously thinking of trying to get on IV to see if it helps with the pain- that is seee if it can get get to areas I am possibly not able to attain through orals.
I know some of you have been on orals for years- but I am into my third year w/out improvement. Yes, I have herxed, many times, but the nerve pain remains.
If I do IV, my insurance (Aetna PPO) will only pay 4 weeks. I am willing to take out a home equity loan to pay for my own medications.
Do you all think it's time to try IV to see if it helps? (My doc. would contune w/orals at the same time).
At this time, I have almost had to quit work entirely, need 11 hours of sleep a day, am in constant nerve pain, and the quality of my life is very dimished.
I have a supportive husband (thank God), a 6 year old and am in my early 30's. I am just trying to determine if going itno so much debt Might be worth the chance. Any opinions appreciated.
-Ex-fiddler
Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Start with the 4 weeks, see if you note any changes at all, and then you can make the decision on whether to continue.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I have been on orals for 3 and a half years and herxed to many times to think about but havent really improved much.My theory is the orals just dont penetrate enough to get my neuro lyme.I have just started IV a week ago so we will see if my theary is right.After 3 and a half years of living miserable and just not responding to orals I am ready to try IV,I dont see many other options for me to try.I would be dissapointed in just 28 days though but if that were all I could try I would take it.
Posts: 308 | From new bedford,Ma. | Registered: Dec 2004
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
In my case, chronic Lyme is a multi-faceted illness. Lyme, coinfections (babs) and metals. Thus I'm treating al of the above with a myriad of modalities, including IV. This is one Mother of an illness, hence the multitask approach.
Mepron, IV, and metals chelation hav made the most difference to date.
IV was worth the inconvienience, for me.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
What about Biccillian shots? Less of an insurance problem and supposedly comprable.
Do you ever here about relapses from biccilliam?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Fiddler,
So sorry I missed your call! But I would have said yes to the above question.
Personally, I knew in my gut that I needed IV to progress, and I was right. It took awhile (15 mths IV), but it was worth the expense. Now, I am well enough to go back to work to pay it off!
I think you have a really good doc, so I would discuss all of the pros and cons with him. And if you would like to try to talk with ME again, just let me know, OK?
Take care, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I think I would have to agree that it is time to give IV a try -- BUT ONLY IF YOU HAVE TREATED COINFECTIONS ALREADY. That is just my opinion and not medical advice.
Hubby will soon be resuming IV's if we can scrape up the money. First time with IV Rocephin -- total of 120 grams spread out over 3 months instead of 2 months -- started losing ground again within a week as had had no treatment for coinfections.
Very important to remember to take probiotics with IV's also. Hubby did not have candida problem, but elevated blood ammonia (hepatic encephalopathy) from overgrowth of other bad G.I. bugs including Klebsiella and Enterobacteria among others.
Took several months to resolve this after antibiotics were over. Symptoms came on suddenly during or after high protein meals -- especially in evenings -- stupor, very uncoordinated (walked like a drunk) and memory problems and confusion (sometimes wouldn't know me or even his own name). Some seizure activity as well.
Wish we had a house to mortgage -- would have had hubby back on IV's many months ago.
While you are at it, I would suggest doing other supportive things thru the IV line also. You can do these things yourself -- IV glutathione and IV vitamin C and possibly IV magnesium as well. These will all require scrips from your doctor, but can be mailordered or Vitamin C and magnesium can be special ordered by most pharmacies.
If it is at all possible, it will cost you much less if you do the IV's yourself at home. PCP trained me to do hubby's. Take notes and just take your time when doing IV's -- I had no prior medical training and it has become 2nd nature.
Be sure to flush the piccline regularly with heplock and/or bacteriostatic saline and change the dressing 1 or 2 times weekly. Depending on if you or your spouse will be doing your own IV's there are some options regarding the PICC line. They can put in a longer line or even one with 2 access lines.
It might be worth trying to get the insurance company to pay for a longer time frame (say 2 months instead of 1) if you agree to do the IV's yourself rather than pay the markup from a doctor's office or the cost of home health.
I would do a worksheet showing the costs of doing it yourself and they may be agreeable if it saves them money. Put it all in writing and get the name of a specific person in Medical Management or whatever they call it to send the info to. It sure can't hurt to ask.
Also, if you do end up paying yourself to continue beyond 4 weeks, insurance may still pay for the antibiotics thru the prescription drug plan or at least you could get it from the pharmacy at the reduced cost that they allow for the insurance plan (not full retail cost).
Hubby got BCBS to pay for IV bags and tubing under major medical -- we order mailorder and then submit for reimbursement.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks all- spoke with Aetna & 4 weeks is it.
But they will pay for 100 Home health care visits to take blood & change dressings. Let you know what happens, my appointment w/doc. isn't for several weeks- just trying to 'get ahead' before the app.
May we all be healthy again.
In thanks,
-ex-fiddler
Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003
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lyme_suz
Unregistered
posted
Hi fiddler,
Our insurance told us 4wks only. However, they paid for 6wks because the infectious disease dr. wrote them a letter. We had to pester him and pester them, but it was worth it. They may pay a lot more than they are willing to admit up front.
We paid out of pocket for 2 of us to total 9wks total. I shopped around and got 2gram rocephin for $70 each. Other places were much more expensive. I have heard that there is a mail order place in CO that is good...
Our visiting nurse gave us hepron and saline and other supplies that she had leftover. The home health wanted $89 a day. Completely outrageous. We got saline and hepron with a prescription and our pharmacy insurance paid for it. Like 10 or 20 for 10 scringes. We were grateful for the way we were able to piece it together.
I don't understand why insurance will pay for so many nurse visits, but not cover the antibiotic.
Our dr. has patients do IV 4 days, then off 3 days. That would save. Maybe you could do everyday at first, then pulse.
Have you heard that you have to watch for gallstones when on rocephin?
I hope some of this helps, and that you can get better soon.
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