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» LymeNet Flash » Questions and Discussion » Medical Questions » So angry about treatment - VENT!

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Author Topic: So angry about treatment - VENT!
lymebytes
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This really is much more personal that I like to get..but I can't help myself... so here I go.

I live on the W. Coast...IV is not used here like it is on the East Coast, obviously.

In fact I have even wondered if we on the W. Coast are being used as an experiment to see how long it takes to get well on orals.

I was SURE 2 years ago (I was so sick, still am) that an LLMD would put me directly on IV with all the neuro issues - but no.

Almost 25 months now I have been on orals and 2 LLMD's won't use IV, one of them ILADS, the other not. No reason given, just a simple "No". OR one said, "We haven't used all the possible oral combinations". OMG, that would be endless.

I am going to get a THIRD opinion now and put out another initial visit fee.

I am so angry about this. This has bled our money dry, my son who has been sick a year now, should be on IV as well, my husband is chronic too...but we can't afford it now. We could have 2 years ago...but all the LLMD visits and medications have just broke us.

Our house is on the line coming up in December when our loan is up, with the housing market so bad it looks so bad, I don't know if we will be able to refinance. That stress of just the THOUGHT of losing our home makes me more sick physically.

All 3 of us should be on IV and I am sitting angry at these LLMD's for stretching this to a point that we couldn't afford IV for 3 of us, let alone one of us.

How long does your LLMD use orals before they go to IV? I was reading the ILADS guidelines (not Burrascano's) they have a renewed interest it seems in orals... I don't get it.

Because of all this delay and the expense of 2 years of 3 of us in treatment, we VERY likely could lose our home and and then what 3 of sick in the streets?

I am outright scared and it makes my pain so much worse. Not to mention..my teen son, who so should be on IV ...I can't believe this has turned into this huge nightmare that it has.

I just feel there is no hope for us getting well without IV...we have all had this percolating for years in us..had we only known 10 years ago LD was making an entrance. But we didn't.

How will we ever stand a chance now? We would not be in this financial situation I don't believe, had these doctor's just put us on IV 2 years ago and been done with it.

If you are inclined to prayer, please say one for us.

Thanks so much for letting cry here...

--------------------
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Tracy9
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I live in CT, and have been on orals for FOUR years. I am now on IM Bicllin. I have seen 3 ILADS LLMDs.

I am now begging them for IV, although they still have other combos they would like to try first.

I don't think it's an East Coast/West Coast thing, there are plenty of lymies who come to Lyme Chat every night from the West Coast who are on IVs.

I actually thought docs out there were far more inclined to use them than the docs here!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lymebytes
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Tracy - It has to be Dr. H putting the W. Coasters (at least in CA) on IV and that is who I am going to go see, like I could even afford the co-payments if he does..in fact I don't even know if my insurance would cover it. I am going to have to jump in on a chat some night soon.

I have seen Dr. S (CD57/ex pres of ILADS Dr. S) he won't put me on IV and you know what, now that I think of it, every time I have been there, none of his patients in the waiting room are on IV..I asked his nurse, does he put people on IV? Her response a naive, "Well sometimes he does IVIG". What?????

I have heard you have to be CDC positive...any truth to this? If that is true we are out of luck, we all are ONLY Igenex positive.

Do you think you have progressed dramatically in 4 years?

I wonder why they pick and choose certain people for IV? Bizarre.

That made me laugh though that you thought we had a better chance out here..no, not with LLMD's in NYC like Dr. R and Dr. H who will have you on orals a month or two (from what others have told me) and then that's it..onto IV.

Have they given you a reason as to why you can't go on IV? I was VERY lucky in the last 6 months to get the non-ilads LLMD to put me on IM Bicillin. I stopped recently after 5 months..but likely will be going back on them.

Thanks for your reply...it is certainly interesting.

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sfcharm
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I am a patient of G.S. who works under Dr. S in San Francisco and I had no problem going on IV. I was on Rocephin IV for 11 months and just finished it in June.

Dr. S was completely aware of it as well. In our support group in San Francisco we have three people currently on IV all going to Dr. S in San Francisco.

I spent one full year on orals and had myoclonus and seizures before starting. I don't think they just put you on IV unless you're really ill and the orals haven't worked.

There is obviously more risk involved with IV but I have not heard of any problem with receiving it here in California when needed.


Barb

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bettyg
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bytes, [group hug] [kiss]


i'm so sorry for what you, your son, and hubby have been going thru these last 2 years and how it's drained the money you once had! [cussing]


may i suggest this on venting to congress??
********************************************


i love calling this no. 1.202.225.2927 ENERGY AND COMMERCE for S 1708 bill, LYME BILL
*************************************


when you are done, ask for the OPINION LINE and they will transfer you to it where you have 2 minutes to give them you name/address and WHY you are calling!!! ***************************
********************


2-3 wks. ago i read an iowan's MOM's post on her daughter's site which took 5 calls and 10 minutes to get it all read and left for KENNEDY'S STAFF!!


so 2 minutes goes by fast....give full name/mailing address on each call you make, and you want S 1708 ON THEIR AGENDA, and then tell them your story.


bottom line if the health insurance companies were paying for our lyme treatments like they do cancer, aids/hiv, etc. ... you would NOT have spent all your savings and your home would NOT be in jeopardy this dec. 08.


also, contact your state senators/federal house reps and let them know the situation and asking them to write the


CHAIRS oF HOUSE...FRANK PALLONE

AND SENATE...TED KENNEDY

asking that they put HR 741 and S 1708 ON AGENDAS so our lyme bills can finally be heard!


you can give them different INFO DAILY!!
OPPORTUNITY DAILY!! please call them.....


this is KENNEDY'S OFFICE...ENERGY/COMMERCE! thx
******************************************


best wishes!!! i feel it gives us some POWER BACK over which we've had none before!!! [Wink]

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lymebytes
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Barb - you are definitely in the minority, the nurse wasn't even sure what I was talking about when I asked about IV, apparently it is that foreign to her. But then again, he has a new staff every few months except for D at the desk, whom I adore & will miss.

GS is great, she treats differently, actually more aggressively, I know a couple of her patients who really like her for that reason. Had I known she was better, I would have seen her in a minute. I am not going back to that office, they took enough of my money and accomplished nothing.

The 3 of us are so sick we cannot work, barely walk and pain unimaginable, neuropathy, white matter lesions, no reflex response, extreme psych symptoms in one of us that is so insane it is scary, sleep paralysis. I don't know what the criteria necessary are for IV is from these doctors, but if that isn't enough for IV, I have no idea what would be. You were lucky. Hope you are doing well.

~~~~~~~~~~~~~~~~~~~~~~~~


Betty - I hear it..but they won't, that I am sure of..what would they care, they don't even believe chronic LD exists. ((hugs))

[ 18. August 2008, 01:34 AM: Message edited by: lymebytes ]

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Tracy9
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Yes, do join us in chat! We are a lively group, there every night.

Both of the LLMDs I've seen, Dr D in Boston and DR P in Wilton are not huge fans of IV. They use it as a last resort. They both believe orals can do just as well.

I am not better, I have been far sicker the last two years than the first. I just begged for IV and Dr P sent me to Dr W, neuro LLMD, to do IV therapy.

Now I have to get a zillion tests done so I can go on IV. I was hoping for Tigecycline, but it looks like it is going to be Rocephin.

I am having a hard time getting through all these tests he wants me to get first. I am so sick it's hard to get to them. Tomorrow I have my colonoscopy and endoscopy though, so I can check those off the list. SPECT scan at the end of the month!

I am IV bound, just on the road to getting there. You are absolutely right, Dr H and Dr R are much quicker to go with IVs. But in CT and MA, no such luck!!!

And yes, right again, most of the lyme chatters on IV in CA are pts of Dr H.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lymebytes
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Tracy - so you are in process now of finally getting IV? Are all these tests what they do to everyone before IV? Geez...sounds like a pain in the colonoscopy for sure!

I hope you have great improvement. It is so obvious orals do not do as well as IV..isn't it?

Why Tigecycline over Rocephin? I haven't heard of Tigecycline..any particular reason? I am allergic the cepholosporins, so I need options, sure would like to know more about Tigecycline.

Can't wait to see you improving! Great news.

I thought about seeing Dr. H so long ago..I didn't follow my instincts though. I was warned about Dr. S and all the patients that have left there.

[ 18. August 2008, 01:37 AM: Message edited by: lymebytes ]

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Angelica
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I will be praying for you and your family and I am wishing all of you increased health and that the medical care you want and need comes your way with ease and the least bit of expense.

May you be and your family be healthy and happy and have a wonderful long prosperous life in your present home.

A.

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lymebytes
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God bless your angel heart Angelica, I just adore you. (Will get to P/M's soon..very bad day! VERY bad.)

((((hugs))))

--------------------
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groovy2
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Hi All

My LLMD is GS - she dose treat aggressively
if you are up to it -

She talks with you-- Not At you -
I discussed with her that I was willing to
go threw the pain that happens when treating aggressively--

If you can not handle feeling 2 to 4 times worse
than you did before starting treatment -
the aggressive treatment is Not for you -

Personally I wasted far to many years being sick-
and I was Ready to end all of this one
way or another -

I took only oral meds in large amounts-

It worked for me -- Jay --

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usyankee
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quote:


I have heard you have to be CDC positive...any truth to this? If that is true we are out of luck, we all are ONLY Igenex positive.


Even the CDC says diagnosis should be clinical and only confirmed by a postive blot.

So far, even though I had bull's eyes, I can't get any treatment at all. All they do is diagnose me with "fibromyalgia" and give me psych tests.

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Anneke
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Dear Lymebites,

I am so sorry to hear about your suffering, and that of your family. It sounds horrendous. I am the only one with Lyme in my family, and it is difficult enough!

I'm hoping to make you feel a little better by telling you this, but it may sound a bit depressing too...

I have a serious case of neuro lyme as well, with Lyme meningitis that becomes unbearable when I am off of oral abx. It has been my experience that IV's - which I did off and on for 2 years, did not make any more of a difference than the orals. I have heard this from other folks as well.

I know when you feel horrible, you hold out hope that if you could just get on IV, it will be the magic bullet to a cure.

This has not been my experience, and it has not been the experience of a good number of patients - I have no idea of the percentage, but if you look at the studies, a signif. percentage of patients who are on, or have been on IV Rocephin relapse after a fairly short period of time.

On the other hand, for some, it puts them into remission. I think the difference is how long one has been sick, and the number of coinfections.

Thankfully, I have a great quality of life when I am on a combination protocol of oral antibiotics. I have tested pos. to all 4 coinfections, so my case has been pretty tough.

I am on a combo of Cipro, Doxy, and Septra, and feel better now than I did when I was on IV abx. and the infection was suppressed - as it is now.

I hope many others chime in here, because my experience is one of zillions, and others here may violently disagree.

A few bits of advice: make sure your doc. knows how you feel, and ask them to give a clear reason for not going to IV.

If depression is a piece of your Lyme puzzle, do EVERYTHING YOU CAN to get medicated and treated for it!!! I know of a great Lyme psychiatrist if you'd like a referral. You can pm me. Depression can make already difficult circumstances completely over whelming. And remember, depression can cause physical pain and headaches and fatigue - all Lyme symptoms as well. So don't just assume those symptoms are from Lyme alone.

I wish you all the very, very best.

Anneke
PS There is a good support group in the Bay Area in Mountain View on the 2nd Tues. evening of the month at El Camino Hosp.

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Nessa1815
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My first LLMD visit, I've only had symptoms since March, but as they are almost all Neuro, I was put on i.v. meds immediately.

From my first LLMD appt to i.v. set up was only 2 weeks, and now I'm sitting here with an i.v. in my arm.

I felt lucky that I didn't have to beg or bring it up. He wanted to get right down to business. Have you thought about traveling, I know that I COULD NOT afford it if I had to. People can say that you just have to "find the money" but there was NO WAY that I could have if I had to.

I hope you find the help that you need. I don't know why some are shying away from the i.v. treatment. I absolutely HATE giving myself i.v. meds and I hate this thing coming out of my arm but I thought it was the only way for me to start getting barrier, given what I've read with Neuro symptoms and i.v. treatment.

Good luck.

--------------------
"~*~My smile hides my bite~*~."

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feelfit
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Hi Lymebytes,

First of all, and most importantly, prayers for you and your family. Hoping that God answers all of your prayers....listen, and the answer will come.

Secondly, I have to echo Anneke. IV did very little for me. It was also my first course of treatment....that being said, orals have done very little for me either. I, however, have only been treating for 9 months. I am more functional on orals than I was on IV.

IV drove me to bed for 2 months....everyday. Orals, I am in bed only 2-3 days per week.

Tigecycline is a new med that showed that it killed lyme in the test tube w/in24 hours. This test was done by Ben Luft (mentioned in Cure Unknown). It can only be administered by IV...it is also reportedly very tough to tolerate.

Studies have been done (pubMed) that state that oral Doxy has penetrated the brain and has as much efficiacy as IV Rocephin.

Who knows? I can't blame you for feeling so desperate and wanting to try IV's. Whatever transpires, I wish you well.

Feelfit [kiss]

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sfcharm
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When I started IV Rocephin I was already back to 70% from a year of oral antibiotics. Once I went on the Rocephin IV it got me to 90%.

I don't think Rocephin IV is the magic bullet, it's just a part of the treatment puzzle.

I was hoping to end the myoclonus I suffer from with the Rocephin IV, it didn't resolve it. But it definitely brought me to a higher level of wellness.

I'm not sure if orals couldn't have done the same had I just stayed on them for the 11 months.

Barb

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Angelica
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I know Dr. H. will treat as aggressively as you want so I think you are headed in the right direction. Also if you want he will help you with adding in herbs be it Buhner Cowden or Zhang.

I really think Buhner's bart herbs have helped me with my headaches and is helping me with my clearing my lymph which is a ongoing process. Have you added in any herbs yet?

Hoping your day gets better and you start to feel better.

A.

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tdtid
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Lymebytes,

I feel your pain of frustration and suffering. I live in NH and my original LLMD was in Maine.

I know that most all the LLMD's in New England are NOT wanting to use IV. I think a lot of it is that they are still trying to fly under the radar.

I did 20 months of oral abx with my Maine LLMD for lyme, bart and babs. After around 14 months, I really started to get my life back. Even enough to travel again, one of my biggest passions in life.

But somewhere along the lines, I got zapped and even while on the orals, lost major ground, it was going severely neurological again and my LLMD in Maine said it may be time for me to "travel/commute" to see a doctor that would treat me more aggressively.

So he got me lined up with Dr. R and yes, I was given IV. So I was over one hurdle but then the next, found out insurance won't cover it, so it's all out of pocket.

We are appealing and will KEEP appealing, more at this point, for the pricipal and fighting for all lyme patients that need these insurance companies to stop practicing medicine without a licence.

I know this is a long shot, but how hard would it be to have any from your family fly to Dr. H or Dr. R. I don't know first hand their percentages of patients they put on IV since I know many with both of these patients that are STILL on orals.

IV is expensive and even though insurance covered orals, they bucked with IV in my case.

I wish I knew what to say to help you since we are all obviously extremely desperate and just wanting to find a way to undig from our holes.

Good luck and keep us posted.

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

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JKMMC09
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I'm sorry for what you and your family are going through.

I have been under the assumption that most LLMDS are trying to move away from IV antibiotic use. It is costly, it has potential deadly side effects, and it is a lot more work for the LLMD.

I myself am on IV now, but only after my SPECT scan showed severe global heterogenous hypoperfusion, I began developing lesions on my MRI, EMG studies proved that the nerves in my arms, hands, feet and legs are demeylinating, I began having seizures (grand mal), and partial paralysis in my left leg.

Because of those symptoms proven by Neuro. testing, I have been put on IV. I am not making as much progress with it as I would have though, and the herxing (or side effects?) are harsh.

Have you been assessed and treated for all co-infections? IV for Lyme will be useless unless co-infections have been adressed.

Also, maybe your LLMDs do have more oral-abx combo's that may work for you, at least ask them what they had in mind (at what dosages, etc) and think about it.

God bless with whatever you decide. -Claire

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lymebytes
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I can't possibly respond to everyone individually...you have ALL been so helpful.

So, I just want to thank you for sharing your experiences with IV (good or otherwise, I need to know) thanks for prayers and your support as always.

Big hugs to you all,
[group hug]

--------------------
www.truthaboutlymedisease.com

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Tracy9
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quote:
Originally posted by lymebytes:
Tracy - so you are in process now of finally getting IV? Are all these tests what they do to everyone before IV? Geez...sounds like a pain in the colonoscopy for sure!

I hope you have great improvement. It is so obvious orals do not do as well as IV..isn't it?

Why Tigecycline over Rocephin? I haven't heard of Tigecycline..any particular reason? I am allergic the cepholosporins, so I need options, sure would like to know more about Tigecycline.


Hello there,
Yes, I am in the process of getting all the TESTS done I have to do in order to be put on IV. I expect to go on them as soon as I get through all these tests.

Tigecylcine is supposed to be far more effective than Rocephin, as someone else here said. However it appears most if not all patients who have tried it have not been able to tolerate the severe fatigue and side effects that it seems to be producing.

Therefore, I assume I will end up on Rocephin rather than Tigecylcine. I was pushing for it, but now I'm not sure it would even be a good idea.

Checked off the colonoscopy and endoscopy today, Spect scan in two weeks, just need to get the nerve biopsies set up. Having trouble finding a neuro on my insurance to do them.

I am hoping to be on IVs in late September or early October at the latest. Will it be better than orals? I really have no idea. I am responding to the IM Bicillin, but ever so slowly.

All I know is that after four years, I think I need to give IVs a shot. We'll see how it goes.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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usyankee
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quote:
Originally posted by lymebytes:
I have heard you have to be CDC positive...any truth to this? If that is true we are out of luck, we all are ONLY Igenex positive.


Conveniently for the CDC they will not put your Lyme in their statistics. Someone needs to write to congress about this because I have been doing research, and if COWS are positive for mycoplasma on the PCR they put them on antibiotics and COUNT it as a myscoplasma! DUH

The CDC does however, state that Lyme is a CLINICAL -- NOT a lab diagnosis. And that the Western Blot is for SURVEILLANCE NOT DIAGNOSIS OR TREATMENT!!!!

Find the info and show it to your doctor.

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