posted
one lyme clinician says yes - it might make me worse and I don't have reserve to handle it hence we should wait.
2nd opinion clinician says - no way, need IV now especially after being on orals for 3 years with not a lot to show for it - although small improvements - still disabled
Ok, now I'm really confused. Any ideas, suggestions, input?
THANKS!
Posts: 19 | From CT | Registered: Nov 2009
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you had not been treated at all and were in a fragile condition, then maybe starting with orals and working up to IV would be a good idea. So, lyme doc would be right in this scenario. This would be ramping up technique.
But since you have been treated with orals a long time already, then maybe IV is a logical next step, so lyme doc would be right here.
It all depends. And you might be the only one who can make the decision in the face of differing medical opinions.
IV could make you worse because of the herx. So, if you did this treatment, then be prepared for ways to survive it. Stop for a short time, use herx remedies, etc.
Posts: 2888 | From USA | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i would say, yes, at some point you just become too ill for treatment. then it's time to look at parasites, candida, etc.
better to let your system heal for ahwile then start over.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Yes, one can be too ill for it. It could cause damage to liver and kidneys if your overall toxic load is too high.
IV might also help save your life & be just the right prescription for you now.
I don't want to talk you out of IV because I think it can absolutely help. However, be sure to have your support stuff in place, too.
If you generally have trouble tolerating Rx, consider assessment for Porphyria, or HPU / KPU. Links are in the thread below.
Also see all the HERX SUPPORT links.
All forms of Bb should be addressed, though. Attention to the cyst form / biofilm is vital. Antibiotics do not address all of that.
And, as Randi reminds us, lyme is never just lyme. Ever.
Parasites, heavy metals, candida, other infections must be considered.
I assume you've been gluten-free for all this time (if not, that could be an important key).
It's best to weigh advice from the experts who know your body. If you sense that you need a better expert, keep looking.
However . . .
LIVER SUPPORT is the key to success. Absolutely, you MUST have a very good plan for liver support all along the way. Without that, I'd never consider IV.
Adrenal and nerve support is also desired.
Good luck. -
[ 01-04-2012, 03:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you need to explore other avenues, or for keys to support methods: ----------------------------------------------
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1, photon) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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I have been on abx (both oral and IV) for nearly 3 years now, constant at times, pulsed at others.
On the positive side, I am about 85% improved!
On the negative side, I recently lost my gall bladder (despite everything I tried to do to prevent that), and my last testing showed my liver is not so hot.
As a result, IV abx (and even orals in my case)was something that my docs and I decided needed to be put on hold.
BUT --- this is not the end of the world!
This time spent resting and healing my body will be spent on working with other supplements and support methods.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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posted
since you havent had any luck with orals after 3 years, i personally think it's crazy to assume they will all of a sudden start working and get you healthy enough for IV treatment.
i tried orals for 2 years and just continued to go downhill. i thought i was going to die before i could find a doctor who would give me IV treatment...
i personally agree with the second doctor, and i think that if you want to do IV treatment, it's now or never. because if your body can't handle IV therapy now, i don't think it ever will be able to since oral anti-biotics aren't helping.
that's just MY personal opinion since you asked. obviously it's your decision and you have to decide what you think is best for you Posts: 442 | From usa | Registered: Oct 2010
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posted
I am in the same boat. After two years of abx I am still not out of the woods. I have had great improvement, but I need to get over the final hurdle. So next month I, too, will go on to an IV Rocehpan plan....as soon as we can figure out how to get it paid for from Medicare. We did sign up for additional insurance and that may help.
I continually have liver et al checked, with extensive blood work every three months. My numbers are getting better. But I still am confused, exhausted and often in pain. I tremble and my blood pressure goes up and down like a yoyo.
BUT, I have a secret weapon! My IMT therapist. Integrative Manual Therapy. I see her twice a week and she is a wonderwoman. She uses a gentle type of massage that clears my liver and helps my brain. The day of treatment I usually feel bushed, but the next day I have renewed energy and everything seems to be working again.
She has worked with a number of lyme patients and she said they all say the same thing.
My other plan is to get walking again. Every day I want to make it to the mailbox and back. It is a little steep so I need to rest. But we plan to put a chair halfway there so I can. I'll let you know how I do.
FWIW, in 2003 I had 2 IV's of abx daily in the hospital for 6 weeks. (a chance septic infection) I herxed like you never saw! But after many years in a wheelchair I walked out of the hospital. No one suspected or tested me for lyme. I began walking and got up to a mile. Unfortunately my symptoms returned over the years and the walking had to stop. Now I hope I will see the same results and will be smart enough to monitor my progress.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
Thank you all. You have given me much to think about. Yes, I've been gluten free for over 6 yrs - dairy and soy as well - long before I was diagnosed with lyme - it helps but.... any ideas on what to take to support liver/kidney? I live alone so doing IV with heavy herxing is scary enough but I have also seen numerous people who just were not making progress make immense progress on IV. Will keep you posted. Thanks again and sad to say - I totally forgot I posted this question and only tonight happened upon it by accident - oh gosh - gotta love that lyme brain
Posts: 19 | From CT | Registered: Nov 2009
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quote:Originally posted by katiebobatie: since you havent had any luck with orals after 3 years, i personally think it's crazy to assume they will all of a sudden start working and get you healthy enough for IV treatment.
i tried orals for 2 years and just continued to go downhill. i thought i was going to die before i could find a doctor who would give me IV treatment...
- I would say get after it!!
Moving this to Medical Questions
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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