posted
My friend started with arthritis, that went away for a year and then she went numb from the waist down.
She is now in a wheelchair and unable to walk except for short distances and can't stand long enough to take a shower. She is @38 years old.
She has had 2 elisa's come back positive, she had some positives on the WB (mostly + and they were 41,66, maybe 58 and some IND). She actually had 2 or three bands show up in her CSF, from a spinal tap( #41 and 93 )!
She has been doing oral abx and has seen no improvement...none.
I must tell you that she let a neurologist treat her with steriods because he promised her it would help because he thought she had MS. (She didn't have any white matter lesions on MRI)
She had a HORRIBLE rxn to those and that is when she really realized that it was probably lyme or some other infection. She thought she was going to die, the numbness and pain got worse. I don't think she has ever "recovered" from the steroid infusions.
I am so disappointed that she hasn't improved at all. She is worried about doing IV's so far from her LLMD (5 hrs) and is talking about going up there and staying a week and starting them up there.
Do you think she just needs IV's at this point and the orals are just not cutting it?? She has been through doxy, ceftin and is now on zithromax. She also does numerous supplements.
Any thoughts?? It almost seems like she should be hospitalized and given rocephin, doesn't it?
ps:of course all the dr's here are telling her she doesn't have lyme.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
It would help to know... How long has she been feeling ill...and how long has she been on treatment with ABX?
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
She got the arthritis around 10/07, and went numb around 10/08.
She started on doxy from local doctors around 1/09, but only took 100mg two times a day for a month or two and then saw the LLMD for the first time 2/09 and started doxy 200 two times a day.
I am not completely sure why she switched and when but is currently on zithromax. Maybe she isn't giving any one abx enough time to work???
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
It's not very likely that you would improve in such a short time. I started to see improvement after 8 or 9 months of treatment, but only slightly.
It is common to change from one antibiotic to another. Treatment can take years for most people.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
She hasn't been in treatment with the lyme doctor long enough yet. Don't expect some change in a month.
That's just not the way lyme responds. Give it a number of months before you hope to see a change.
With the severity of her symptoms, I'd say she needs the best lyme doc she can possibly get.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
"I am not completely sure why she switched and when but is currently on zithromax. Maybe she isn't giving any one abx enough time to work???"
My thoughts precisely. Sometimes, we are so impatient to feel better that we fail to give the meds a good chance to do their thing. I've learned that a good 4 months is really needed on any one protocol before considering switching meds.
Also, if she has been infected for at least a year or so...it will most definitely take more time to recover than those with a new infection. Timing is everything!
Doxy is a great starter med for TBDs as it will cover a multitude of illnesses. But after a few months (3-4, IMO), things need to be re-evaluated to decipher if the current med is still helping based on patient progress or lack there of.
It sounds like your friend has CNS issues. perhaps IV would be a good choice based on that alone. Also, she may want to speak with her doc about the possibility of Bart as a co-infection, as it tends to really aggravate the CNS severely.
One more thought...many require a combination approach to their protocols. If she is with a doc who wants to only do mono-therapy, it would be beneficial to ask what his/her reasoning is.
If she can afford to be close to her doc for the beginning of IV, I think that is a very good idea.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I guess I had some major herxes and saw improvement a lot faster. I know my LLMD says to give each abx at least 6 weeks, but he did tell me to get off the ceftin a lot faster than that.
I am sure everyone is different. I had symptoms that disappeared with in a month or two...not all, but I saw definite improvement. Everyone around me saw it too.
I realize by reading posts on here that not everyone does see improvement in the first few months. I just don't want her to give up because she doesn't think it is ever going to help.
I am not saying I am "cured" by any means. There are symptoms that come and go and some that hang around a LOT!!
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
yes, we all respond individually to treatment...because we all have been infected by different ticks carrying different bugs and have different immune systems.
Again, for someone that is so ill from this (wheelchair bound), 2 months is only a drop in the bucket for treatment.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Well, since he is also my LLMD, I know he WILL do combo tx! I was on my way to doing 3 abx at once (due to neuro symptoms flare)...when my liver enzymes elevated.
He probably just wanted to start her out with doxy, especially since she is hesitant about doing medication in general.
He also says that he sees more improvement with IV's if the patient is started out on orals.
posted
Like everyone said she really hasn't been treated long enough. But Bryan Rosner's book mentions that mercury toxicity can keep people from making progress. A few studies have been done showing that mercury helps an infection stay resistant to antibiotics and the immune system. So that's always something to look into at some point.
Posts: 499 | From Indiana | Registered: Oct 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
She has Lyme Disease, obviously. Co-infections need to be considered and a competent Lyme Disease specialist needs to be working the case. I don't know who is working the case. Let me know and I can tell you what I know about them.
-- Me
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
She only saw the LLMD for the first time last month?
Especially after steroid damage, this can take years to resolve. Didn't the LLMD tell her that it would not be a fast turn-around?
And, yes, as pryorka says, lyme patients have an especially tricky problem in that the spirochete latches onto mercury and then when that is treated, unless the mercury is also addressed, more problems can occur.
this is an extremely complex path. I hope your friend was not expected a fast turn around but if she is being treated by a wise ILADS-educated LLMD, that is a good step.
I am confused, though that she seems to be only on one Rx right now, zithromax. Most ILADS LLMDs use a combination treatment.
And - as other wonder - was she assessed for coinfections?
Also, it's important to note that not everyone does okay with zithromax. Some have to switch, especially if vertigo or tinnitus get out of control.
Best of luck to your friend. It can be along path but if one has an excellent doctor, that is the first step. Reading Singleton's book and the "Success Stories" thread - and from other books - can help put expectations in perspective.
posted
My friend called last night and she just got the results of an MRI that was run in Feb.
She now has 4 large lesions in her brain.
So, before the steriods she had no lesions....a couple months after the steriods she has 4??
Even though she has had 5 or so positive tests for lyme, he wants to run another one.
*****SIGH*****
I can see where this is going and I am scared for her. She would literally do ANYTHING to walk again.
I am not feeling so great myself and don't have the energy to fight this battle for her. I have told her everything about all this at length, including a lot of your points made on this post.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
My LLMD believes that Rocephin gives the best BBB penetration.
When I was taking a nose dive in relapse, he jammed a line back in my arm & put me back on it.
I believe it took at least 2 months on IV Rocephin to start improving.
After pulling me back up out of the downward spiral (3 months), we started getting aggressive with the coinfections.
It's really frustrating to not be able to just kill it all at once, but severe Herxheimer reactions and massive die off can cause damage too.
That's why it's important to use a LLMD that has a great deal of clinical experience when someone is really in bad shape to begin with.
If the LLMD wants her on IV, she should do whatever she can to get started ASAP. Tell her not to be concerned if she doesn't see much benefit for the first couple of months.
I also believe that most see more slow, steady improvement with Rocephin. I don't think it's the dramatic turn around that one might hope for if they've watched the TV shows.
She should also remember that she can feel worse before better, due to the Herxheimer reactions AND I wouldn't even count the 200mg/day of Doxy because that bacteriostatic not bactericidal.
FWIW- Ceftin & Zith never did diddly-squat for me.
If it were me, I'd want to get on the Rocephin & take down the Lyme, get the tests done for all the possible co-infections and work from there.
If her illness seemed particularly aggressive, even before the steroids, I'd bet there are coinfections at play.
Both Babs & Bart can cause neuro symptoms to present more severely.
I don't understand why the Zith, unless LLMD is suspecting a different organism like Mycoplasma or something. If it's a well-known good, experienced LLMD, I'd have to trust clinical judgment.
That's my $.02, FWIW. I'm sorry that your friend is going through this. She must be scarred out of her mind.
Give her this for me.... and let her know she's in my prayers.
Ali
[ 04-02-2009, 07:14 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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