posted
Usually I can find something hopeful about my daughter's illness. Even if it is that the next antibiotic might be "the one". I am feeling very discouraged now, though.
We have been treating for 2 1/2 years. She has been mostly in her bed or on the couch for almost 3 years. And she isn't much better at all.
She used to have mood disorder symtpoms that have gone away. She now has tachycardia and severe fatigue to go along with her constant headache, though.
She is now on Omnicef and zith and has been for about 6 weeks. We are adding a tindimax pulse now. So far, the only change with the Omnicef and zith is a tiny flare of irritability.
I feel we haven't done strong enough antibiotics. Sometimes when we start a new treatment, she will improve enough to look like she feels better (but she says she doesn't) but it doesn't last.
Her LLMD wants to give the Omnicef/zith/tindimax more time. We will talk to him in about a month.
Is there any hope of IV abx helping her if she has gotten such a poor response to orals?
We have been with this LLMD since October. She is better than when we started with him, but she was at her absolute worst then and had just been abandoned by her LLMD so not on any abx. I like this doctor the best of any we have seen, but she isn't better compared to a year ago. How long should we give this LLMD?
Our next option is to go to a doctor that will give her higher doses of abx. My daughter couldn't walk without help when she was taking 2 antibiotics and Valtrex so I am scared the high dose antibiotics will make her a lot worse. She seems to get worse on some antibiotics but not get over the herx (if that is what it is). How long do we let her herx without getting better?
I trust her current LLMD to help us decide these things but he thinks she wouldn't be able to handle higher doses. I am not sure that is the way to go either.
Thanks if you have read this far.
[ 07-10-2010, 12:49 PM: Message edited by: jkmom ]
Posts: 984 | From US | Registered: Dec 2007
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posted
I'm so sorry to hear that your daughter is not much better after 2 1/2 years of treatment. That must be very discouraging for the whole family.
My experience over the past 1 1/2 may or may not be helpful to you. I started my treatment with Mepron (2 teas. per day) and Zith (1500 mg per day). My LLMD wanted to treat Babesia first. I did those meds for 6 weeks. I had to stop due to tachycardia and a "herx" that just would not stop, like your daughter.
Then, I was able to get IV abx paid for by ins. for 12 weeks. I did Rocephin (1 mg in a.m., 1 mg in p.m.) for 5 weeks and had to stop that due to developing an allergy (rash and itching). Next, I did Invanz (1 mg per day) for 7 weeks. I saw significant improvement on Invanz. I was able to really enjoy Christmas with extended family in town. Then, my ins. sent me a letter of denial and I had my PICC removed.
That was a big mistake. I'm not sure why my LLMD didn't encourage me to keep the PICC and fight my ins., or even pay out-of-pocket somehow. He just said, "We can treat with orals." I have gone steadily downhill since stopping the IVs, even though I've continued with oral abx. I'm as sick as before any treatment. My family and I are discussing ways to pay for another PICC and for Invanz, which is a new and expensive drug.
So, for me, long-term IV treatment is going to be key in recovering. Oral abx have done nothing for me.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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I am in pretty much the same position as your daughter. I treated for a little over a year with orals. Several combos. Doxy, Amoxy, Probenicid Doxy, Ceftin Doxy, Biaxin
Then, I did 3 months of bicillin injections. And now, I am treating with IV Invanz. I have done this for 2 months, and I am not really seeing any improvements.
Really, I haven't seen any improvements from the start of my treatment. My main symptom is fatigue and getting out of bed is a nightmare.
However, I wasn't willing to give up on treatment unless I tried IV to see if it was the thing that would make me better. At the endd of April I got my PICC line and started with Invanz (2 months). Since I am not doing better my doctor is going to try Vancomycin (sp?).
Total treatment time for me is 21 months.
Give your doctor some time. Also, maybe think of trying IV, and herbal protocols. Good luck to you!!!
Posts: 893 | From Florida | Registered: Dec 2008
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posted
She did 5 months of Mepron/zith. At first, she seemed better, but it didn't last.
I just asked her LLMD about that and he didn't think that was a factor now.
Her LLMD uses herbs and abx. She is about to start Japanese Knotweed and colloidal silver. She takes lots of supplements.
We won't give up without trying IV. We can pay out of pocket if we have to, but so far, I haven't found a doctor to order it.
Posts: 984 | From US | Registered: Dec 2007
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I've just added Lauricidan into the mix with my abx. I'm not sure if it will do any good but worth a shot...I've heard some positive things about it (anecdotally at least.)
Also consider more testing...maybe an analysis of kryptopyrroles/"mauve factor," hormones, etc.
I'm over three years in and know how frustrating it can be. Of course, the only option is to keep trying. Leave no stone unturned.
Good luck.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
I'm so sorry to hear your daughter is still suffering. Your family is in my thoughts and prayers..........
Posts: 648 | From northeast | Registered: Feb 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Do you know her Babesia strain? I had B. microti, and it took 1 year on Mepron, Malarone, Zith combos to get it under control. I had extreme fatigue and palpitations. I was an emotional wreck.
B. duncani is even more difficult to treat, often requiring higher doses of abx and longer treatment time. And the symptoms are more severe.
Parasites can stand in the way of recovery. Reasearch on XMRV, the retrovirus, is in its infancy. It could play a major role for us.
We are such complicated cases! Do not give up! I'm glad you like your new LLMD. Please give him a chance, but keep your options open for yet another doctor.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
jkmom, I am sorry your daughter is so sick.
I agree that her symptoms could be from Babesiosis. I have fatigue, palpitations, and severe headaches from Babs.
Five months is not really that long to treat it. You said her progress did not last after stopping treatment for it, so it sounds like she may need longer treatment for Babs.
I hope she feels better soon.
Posts: 4681 | Registered: Oct 2000
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
So sorry that your daughter is still not feeling well. Will keep all in my prayers. Hugs, Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
My prayers for you too. I'd rather have this stuff myself than have to watch my child. God bless you.
Posts: 113 | From CA | Registered: Jun 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Hi JK Mom,
I know that it can get discouraging. I would like to suggest the Asyra machine to have her tested. You can go on to their website and find out how it works. Then you can find someone in your area that has it.
I was completely skeptical about this stuff but I took the test and found some things out that blew my mind. They check for very specific bacteria and fungus etc.... These can be comfirmed with a blood test.
It does not cure you but it tells you which infections you are dealing with and which are high on the list.
Posts: 2232 | From USA | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by jkmom: She used to have mood disorder symtpoms that have gone away. She now has tachycardia and severe fatigue to go along with her constant headache, though.
Look into magnesium. Low magnesium can cause cardiac irregularities, headache, and fatigue.
Is she taking a pharmaceutical quality fish oil? This will reduce inflammation and improve cell wall integrity.
I found that systemic enzymes reduce the body pain and severe headaches. I take Wobenzym daily.
posted
Have you read the Lyme Disease Solution? I'm in the same boat as I guess many others are here where I do antibiotics and well, no improvement. This book has been amazing so far. It is written by a doc who had lyme disease that went undxd for 8 years. Anyway, in it, he explains very cleary how the immune system works and how to make it work better. I have seen them give old people medicine for pneumonia and they died anyway. People say all the abcs in the world won't get you well without your immune system so...I for one am gonna tune mine up!
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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