At my last Drs appt, I was told that I'd probably never get completely well. Of course that's not the first time I've heard this, but at this point, I don't want to settle for anything less than completely symptom free. At the same time I was told that "some Drs on the east coast use massive doses" of oral abx, and she didn't know how the patients tolerated those doses.
But that just raised the question in my mind, maybe the reason they're using massive doses is because they're really trying to eradicate all of the infection and realize that in order to accomplish that, the only way the necessary concentration of drug can be reached in the brain is via massive doses. And since my Drs think I may never get completely well, they're not trying as hard to eradicate the infection, thus they're not treating me as aggressively as other LLMDs might.
After expressing my concern and frustration, they increased my dose of Bicillin from 1.2mu q week, to 1.2mu every 3 days. I'd been getting 1.2mu q week for almost 1.5 years, but each time they tried DC'ing it and replacing it w/an oral abx instead, I'd start to relapse. This seems to tell me that my Bicillin dose was partially effective, but not enough to completely eliminate Bb. Keep in mind that I've been on several other oral abx along w/the Bicillin all along, including Tindamax.
Now maybe I'll really never be able to completely eradicate the infection w/abx, but I'm curious as to anyone else's experience, who may have or are receiving larger than "normal" doses of abx.
The last thing I have to mention is that, based on their comments at my last appt, I've decided to let my internist take over my treatment. He's way less expensive than they are, has a much more postitive outlook, and has treated another local patient w/Lyme w/the assistance of Dr SP on the east coast. I dont' know about you, but I don't need to keep paying my Drs $250 to $350 per appt to tell me that I'm never going to get completely well...
I plan on getting well even if it takes herbs, rife, IRT, CS or ???
Thank you for letting me vent.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If I were in your shoes I'd find another LLMD. I truely feel that they are our best hope of getting well. Like all doctors, they are not all equal. As I've said here before, go for an ILADS doctor since they have each other to learn from and are learning from each others experience much faster than someone out there on their own. Plus their world typically revolves around lyme and they have a better chance of keeping up with new developments because of that.
Forgive me if you already know all of this and have already done it but have you been tested/treated for co-infections? If you are not getting better, that is certainly the next step I would pursue. Clinical diagnosis may be necessary because the testing is unreliable. If you've already done that, then take a look at metal chelation since apparently that can keep one from getting rid of the infection. If you've already done that, then I'd look at toxins that may have been left behind and could still be causing symptoms.
For myself, I've decided that if I'm still not well after all of that, I'll hit the antivirals and antifungals.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thank you, Terry. My current LLMD &LLNP are members of ILADS. In spite of this, I wonder if ego (i.e., "my method is better than his method...") enters into the picture?
They acknowledged that some LLMDs have given Bicillin up to 3 times a week (Dr. B), and yet their preference is for only one dose per week. Ego shouldn't be a factor...their main concern should be getting us well. Yet these differences in protocols remain.
When you think about it, that's a huge difference...I've been getting only 1/3 of what Dr B's patients would have been getting. I know many others get Bicillin once a week like I have, and that's fine if they're ok w/it.
As for my internist, I think as long as he's working together w/another ILADS Dr., that should be ok.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
I am on massive doses of a lot of various medications. I see that doctor on the east coast (Dr. H, NY). His opinion is that you need to treat all the forms at the same time. He also says I'll get better and I was exposed to Lyme in the early 70's.
If your doc is telling you that you won't get better, but other people do, I'd get another doctor.
I'm NOT on the east coast, I have to fly there to see Dr. H. His assistant said that the only other doctor to use this many meds is Dr. B who retired in Dec. to do research.
I started on antibiotics on Jan. 20 of this year. I'm already having some good days.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
This is just my opinion as a fellow lyme patient.
I agree find an new llmd.
Not every dr (ILADS approved or not) is a perfect fit for every person.
I definitely also agree that coinfections are something that needs to be addressed ESPECIALLY when the patient has been having problems making progress.
If they are telling you you will NEVER get better... thats a bad sign.
posted
Thanks for the advice on the coinfections. I forgot to mention that earlier. I WAS tested and was negative, but treated for Bart bec I was symptomatic. That part seems to have worked out well because my feet don't hurt anymore.
Six, I'm glad to hear you're feeling better already. I can't imagine having been ill w/this for so many years.
Blessings,
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
Patti, not completely better ... but having good days here and there. Most of this time I've been very healthy. I've had four times in my life where I've had symptoms, though I was exposed in 1972. My first sign of symptoms was after a big stress in 1982. Apparently, my immune system can handle it somewhat because it's seemed to "go away" three times, but this time it was too much to handle.
I'm being treated for babs, but tested negative.
I'm wondering about the sore feet for bart. I never had any foot symptoms until the other night. The bottoms hurt, but the most annoying thing was that my feet were so HOT! I'll have to mention it to my LLMD ... I think I'm already taking stuff that works on bart anyway.
Hope you get feeling better soon!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
After 2 years of going to Dr. H. and being given massive doses, I did get better but that is "better" relatively speaking and very far from "all better" or "back to my old self".
They said they would make my daughter better too - again, that has to be taken in comparison to how she felt when she first got there. She still needs a reduced school day & she still suffers ... just not as much.
I had negative, sometimes frightening, reactions to some of those massive doses in combinations; they also kept switching me around before giving anything time to work. It was crazy. And it was outrageously expensive: the meds, the constant blood tests, the monthly visits or phone conferences, the travel... and the nutritional & herbal supplements.
I gave it 2 years; now I am trying the slower gentler approach with a local doctor who is willing to treat & learn. There are now 4 of us going to him, who all know each other & have a lot of Lyme info/experience between us.
I feel that 'slower & gentler' is what I need right now, although that still means I am on doxy & tindamax, a good combo. And Benicar, which I actually needed for slightly high BP. Today he asked me try reducing the doxy just a little, to see what happens.
Meanwhile, I have the Buhner book & I keep researching protocols. Just have to take it one trial at a time, one treatment at a time, one day at a time. And never give up hope!
ESG
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
not "getting completely well" is different than not getting better or not getting mostly better. which did your DR mean, I wonder?
I have one of those massive dose oral abx east coast llmd's, as good as they come.
he goes with massive doses because that works for many of his patients. i'm not one of them so far, but that doesn't mean he is a bad dr. he thinks i'm having bad progress, but that doesn't mean he's lost hope for me or that he's on the wrong path.
he's always said that the odds are i won't be 100% again. so? start at 40 and shoot for 50 then 60 then 70. me, i count making progress as success..
good luck- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My LLMD says "Remission" not cure.
He says that he has had too many patients relapse years later with Lyme.
However, he does feel that he can get me symptom free....which is fine with me.
He says if we had caught this in the very beginning, and treated it aggressively....then by all means a "cure".
That's okay with me.
I am hopeful enough to go for "cured", but realistic enough to know that if this is
something I have to deal with on and off for the rest of my life....that I can.
I would find another LLMD, or clarify what your other LLMD said.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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