I have been reading and researching on this site for months, but this is my first post, as I am desperately seeking your wisdom.
I have been on abx. since June of this year, and have gone steadily downhill ever since.
I have Lyme, and Bartonella and have had Lyme for approximately 4 years undiagnosed until this summer.
Before treatment I had symptoms but could still walk, drive and work.
I can do none of these things now.
I am on crutches and walking with them at a snails pace with no strenght or balance.
I am swollen, have intense back and rib pain, some sight problems as well as assorted other symptoms.
I have basically become disabled after 1 month of Doxycycline, 5 weeks IV Rocephin and Oral Zithromax and Minocycline.
This is not a herx. a herx does not last 5 months. My doctor (Dr. H. of ILADS) does not know why I am not responding, nor does he know what will make me better.
He says I am one of his difficult patients, everyone else gets better with abx. other than myself.
He has tried every supplement on me that he can think of and no improvement.
He has suggested possible IV Glutathione, Marshall Protocol or low-doase steroids.
Has anyone had this situation? I feel like the abx. have caused all of my problems, but it seems to be the only thing you can do to get better.
Help.
Posted by lou (Member # 81) on :
Hard to know what to say. I have heard of people who did herx for a very long time, because they had been sick a long time before treatment.
Seems unlikely the abx are "causing" your decline.
In situations where meds don't seem to be working, the usual courses of action are to try different meds, or different doses, or add something like hyperbaric, if it is affordable. Or questran, which seems to help some people, but not others.
It is sometimes very difficult to determine whether a worsening of symptoms is from herx or the disease progressing despite treatment. Then, if you mix in possible interactions of meds and individual reactions to some meds....well, it gets very confusing.
Maybe someone else will come along who can shed more light on this.
Posted by riversinger (Member # 4851) on :
Well, I did herx for five months on doxycycline. I didn't see any improvements for six months, and even then it was at a snail's pace.
I am finally seeing some real improvements now after two years of treatment. I don't know if this might be your problem, or even for sure if it was mine, but here is what has helped.
Dr. S in MD has a theory that a certain percentage of people are unable to clear the cellular debris from the Lyme as it dies from the antibiotics. This debris recirculates as neurotoxins, causing more and more symptoms. The more effective you are at killing the bacteria, the more neurotoxins you have to contend with.
I went through the testing to see if this was true for me. It seemed to be, so I gave the treatment a try. Questran, or cholestyramine, is the first step of treatment. Depending on what all is happening for an individual, that may be enough, or there may be more steps.
I am three months into this, and my life has turned around. I don't think it is the answer for everybody. Even Dr. S thinks this is only a problem for about 25%. and I don't know for sure how long it will last. But after 13 years of severe illness, I am grateful to be having good weeks, rather than good hours.
If you want to know more, look at the www.moldwarriors.com website. Dr. S believes mold and Lyme cause similiar problems. This book gives the best explanation of his theories so far.
Posted by krazykt1 (Member # 3739) on :
I started abx may, 2003..was walking. driving and able to work pt. By july I was unable to walk, work or drive..Today I am treating babs and have seen major improvement in 6 wks. I only wish I had treated babs properly from the start. I don't know if leaving it run "wild" while I took lyme meds has done permanent damage? kt
Posted by 5dana8 (Member # 7935) on :
For what,s worth I have had lyme 19 years.I did IV for 6 months and herxed the whole time.It was brutal!!High germ load the longer you have had lyme.I herxed everyday.Thought I was gonna die.Got much worse. I am now on orals X 2 years ,one week one and one week off.I am still herxing on my week on ABX but not as bad as IV.
I heard you mention maybe adding low dose steroids.I have heard so much about steroids at any dose making the disease worse.Even Steroid shot are reccomended.
Its a long road and after three years of intensive ABX treatment I am finally starting to have good weeks off.
I did't see any real progress untill this year.I can honestly say it was worth it.
Have you been treated for co-infections?
Good luck and hang in their. dana
I am not a dcotor just my personal experience
[ 31. October 2005, 06:29 AM: Message edited by: 5dana8 ]
Posted by lou (Member # 81) on :
You say you have bartonella, but I don't see any sign of treatment for it. Is your doc planning to do that later? Some of your symptoms are presumably from bart instead of lyme.
And did you have babesia testing? What kind?
Posted by Lymetoo (Member # 743) on :
Forget babs testing and go straight to treatment. It may save your mobility. I herxed for at least a solid year. Awful.
I hope you get some help. TAke care. Posted by dmc (Member # 5102) on :
up - so others can see and maybe respond too.
Posted by VLSer (Member # 8189) on :
Thank you for all of the responses.
I did not test positive for Babs. but because I was still experiencing night sweats, my doc. gave me a script for 1 mo. Mepron to treat it.
I am still waiting for my Ins. Co. to approve it...
I thought the Zithromax would treat the Bartonella- I do horribly on it! Massive arthritis among other things.
I think the consensus from these posts is to treat the co-infections. I was thinking the same thing. But this is SO hard!
I just wanted everyone say STOP the abx. and you'll be fine... No such luck. As one of the replies notes- pay now, or pay later.
Ugh. I wish we didn't have to pay at all!
What is the typical treatment/duration for Bartonella/Babs?
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