Topic: Very discouraged - doxy didn't help, doc says I may not have Lyme after all!!
btmb03
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posted
OK sorry everyone, I need to vent and *badly* need your support and encouragement. The past few mths I've been on doxy and generally have felt much worse on it...worse joint pain, sleepy, all that.
Now my LLMD says because i didn't have a positive response to doxy there is a possibility I don't have Lyme at all....!!!!!
I am SO upset. My Igenex was negative, only bands were: 41, 58, 18 positive and 31 IND. LabCorp was also CDC neg with IgM very high. Tested neg for co's. I know I have elevated EBV titers.
The next step is cyst busters but if I don't feel better on those...well this doc will discharge me from his care!!!
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Starfall1969
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posted
I'm no expert on this, but I thought everyone was different with responses to the abx.
I have heard some people doing well on Ceftin or Zithromax, or a combo of abx.
I don't think the doctor should try only one abx and give up.
Are you on any additional supplements or other meds?
I know LLMDs aren't cheap, and they're often hard to get appointments with, but I'd be seeking a second opinion, especially since you do have some positive bands.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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feelfit
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Gee,I have bben treating for 15 months and have not had a positive response....but I certainly have lyme...
Recent WB still positive IgG and IgM.
It is pretty common to feel worse on abx initially, so I don't know what your doc is thinking???
Maybe he/she has something else in mind? Co-infections, viruses?
Good Luck
Posts: 3975 | From usa | Registered: Aug 2007
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btmb03
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posted
Thx guys, I feel the same way in terms of trying different meds but he is firm on his protocol.
No, he feels our bodies *clear* viruses and my previous doc (not an LLMD) also felt once the lyme was treated the EBV would come down??? Now this has got me all upset.
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sutherngrl
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I have done 4 different antibiotics and felt awful on one of them and felt like I even went backwards on it. Right after that when I treated for Babs is when I started to feel better. That was around 8 months of treatment.
Many people don't start to feel better for several years of treatment.
If this doctor doesn't think you have Lyme, then what does he think you have?
Try not to be too discouraged, there are other LLMDs around! I would start looking for one.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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charlie
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posted
doxy is no panacea for TBDs. the two lymies in this household...one with an expanding bulls-eye rash and the other with an ELISA of +4.89! got NO benefit whatever from doxy.
you need to try another abx combo and if the doc isn't willing to co operate, you'll need to get another LLMD.
I tried several different mixes of meds before finding one that really worked well (bactrim/biaxin). I self treated which makes it easier to switch around and find the right mix for a particular case.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
My joint pains didn't appear until starting doxy!! They got really bad for a time.
It helped the constant headaches and neuro stuff first, then the joint issues resolved over time.
I don't think many people feel "better" on cyst busters right away either??
I tried ceftin, then zithromax...like starfall said and saw improvement with each. There are a LOT of different options to try.
You might look around for other LLMD's for a second opinion. I don't know what part of the country you live in, but my LLMD doesn't usually test for co-infections because the strains in our part of the country won't usually show up on the tests that are available.
posted
I am very teary thinking that maybe I'll *never* get better since I haven't had a "positive" response to doxy..since he swears by it.
Charlie, Sutherngrl, soonermom, I'm glad that switching around different meds/combos helped...trust me I'd self-treat only with my brain I'd end up in hospital or something like that.
BTW if it isn't lyme, he has *no* idea what I might have...(hmm joint pain, neuro probs, fibro, horrible fatigue, heart palps, etc..)
I know, I'm panicking over the doc's words, it has really dragged me down.
I'm starting the biaxin shortly then will add flagyl..I just hope all h@!* doesn't break loose.
Thx for your support, I don't think I've ever felt so down this bad..even on doxy.
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Dekrator48
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Member # 18239
posted
btmb03,
Please hang in there. I've only been treating for 2 1/2 weeks, but my Dr has me on doxy, plaquenil and zithromax at the same time.
Not every LLMD does things the same way. Maybe the meds you will be starting soon will help.
Lyme and co's are very complex. See what happens, then consider another LLMD if yours isn't helping you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
So sorry you're discouraged. We understand the feeling.
What dose of Doxy were you taking a day? It's possible that the dose was not strong enough.
It's also possible that the "LLMD" is not as informed as he should be. Some drs say they're Lyme drs when they really are not what we consider LLMDs.
Considering the IGeneX test, my WB had 41+ and nothing else, but I definietly have Lyme. Lab tests are an important part of diagnosis, but should never be used to rule out a Tick-Borne Disease - Lyme or Co-Infections.
Not asking for your city, but what is your general geographical location? Are there other LLMDs near you?
Posts: 4638 | From South Carolina | Registered: Mar 2001
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btmb03
Unregistered
posted
Appreciate your kind words of support. Was on 400 mg doxy, full dose. I also get severe chills, sweating during the day, doc not willing to try babs or bart tx.
Thx, I might have to be more patient and see what the biaxin/flagyl combo might do. Will post how I do!!
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As hard as it seems, it looks to me like this doctor isn't going to be a good fit for you. Sounds like he's ready to give up right at the beginning of treatment and he's not willing to treat for coinfections? Those are two huge red flags.
Very few people here don't have other co-infections. You have options here and Lymenet is a great resource to help you find another LLMD and look at treatment options.
Posts: 984 | From San Diego | Registered: Nov 2006
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map1131
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posted
btm, I don't agree with your LLMD. But who am I do doubt what he says. I'm only someone that lived the story for 10 yrs.
I used doxy early, with blessing of having PCP that happened to know my sx very well could be lyme.
He thought that since we caught it in the early stages (?) that doxy would be the cure all. Wrong it failed.
Early he threw in a combo of everything with it and almost included the old kitchen sink. Better wasn't in my vocabulary then either.
My LLMD almost 3 yrs later keep saying take meds (abx) until you feel better. I never got to that point with any # or combo of abx.
The LLMD just kept trying different combos. When you say "better" are you meaning having no improvement?
Or is not being better the fact that you continually have herx like reactions to the doxy? I see you've added post where he's now switched to another combo of abx.
Sometimes it takes months to feel "better". Sometimes some patients never feel better with abx. Abx can fail.
It's just a road all of must travel until we can figure out our road.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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TerryK
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posted
Is your doctor a member of ILADS? I would think that most experienced and trained LLMD's are looking for a clinical response which doxy seems to have elicited.
You have some very specific bands to borrelia, particularly 18 but also 58.
In my non-professional opinion, it is way too early to say you don't have active lyme as the underlying cause of your symptoms.
I agree with Parisa - I see red flags all over the place with this doctor.
Sorry you aren't having an immediate positive response to doxy but that is not at all unusual in lyme patients.
Best to find a doctor who is a member of ILADS and has been treating for awhile.
Hang in there. Don't be discouraged. I really think your doctor is not on the same page as most ILADS doctors.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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btmb03
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posted
Map - well put, sorry you didn't improve with abx esp since you were in the "early stages". May I ask what protocol you're following right now? and for what?
Terry, Parisa, also good points. I thought bands 18, 58 were something vague like "OsP" and "Heat shock protein", ie: unknown...
I'm not sure if he belongs to or follows ILADS protocol. No P450 testing, no HLA DR4 testing, only abx and lab work, very few supplements. Sigh.
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disturbedme
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That's really odd that a LLMD would say that. Not everyone has a 'GOOD' response on Doxy!!!! I don't get it - why would he say that you don't have lyme just because you didn't get better? Lyme is a LONG road to travel down... most people don't get better for years.
Also, my doc and from what I've been told by others is that either an increase in symptoms while on meds or a lessening of symptoms while on lyme/co meds could also mean lyme/co-infections. So it could go either way. If you get worse (herx or flare) that can mean lyme. If you notice symptoms get somewhat better, that can also mean lyme.
Also, like Charlie said, Doxy isn't that great of a medicine. Most LLMDs eventually use something a lot stronger or even multiple abx at the same time.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Keebler
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Member # 12673
posted
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You said: " . . .I'm not sure if he belongs to or follows ILADS protocol"
------
How was your "LLMD" referred to you? From others in a support group? From here ?
When he first assessed you for lyme, did he do a thorough exam and history quiz?
I don't think your doctor is ILADS-educated by what he has said about needing a positive reaction to doxy. (And lyme is usually never treated with just one Rx, anyway.)
Is he ILADS? You need to find out. Now, it may well be there are other things he is not saying - and it may be that you don't have lyme. However, there are some missing pieces to this puzzle.
But - he said you did. Treated with doxy and now just says you don't?
How long have you been on doxy? Did you EVER have a rash.
ILADS-awareness is one of the very first things of importance in selected a LLMD. It usually goes without saying that a LLMD is ILADS-educated or they would not be a LLMD.
Most LLMDs are ILADS members but, even is not a member, it is vital that he has read all the research from ILADS' authors - gone to some seminars and conferred with other members.
Relying only on doxy is not a good move for any doctor.
And - by saying he has no clue if not lyme, he is not educated in other co-infections from ticks or the other chronic stealth infections that many lyme patients also need to be assessed for (such as Cpn; HHV-6).
Now, not all ILADS-educated LLMDs follow ILADS protocol exactly or for every patient. They may have to vary but it's a staring point. A basis of knowledge and understanding.
I think you need a new doctor and one whom you can interview about her/his knowledge base.
posted
Disturbedme, Keebler - his rationale for doxy is that most pts initially worsen then start to feel better and I didn't...so I might not have lyme. No mention of co's.
OK ... I'm getting the drift of what everyone is saying. No, he hasn't tested for any HHV viruses (my previous doc tested for them), Cpn (wouldn't doxy have helped), myco, etc.. double sigh.
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seekhelp
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posted
btmb03, oh your story sounds familar. I lived with it last month. I think LLMDs at times like to call it quits when a patient doesn't improve to boost their success rates. Patient's health and well-being seems to be a game to some of them and it's not appreciared.
They're happy to take you hard-earned money and give you a clinical Dx and hope and then toss you out on the street later.
a definitely timeframe and drug mix should be tried before making a determination one doesn't have it. There should be a set routine.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Keebler
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Member # 12673
Just because you did not have the "right" reaction to doxy does not mean that you might not have lyme.
That is a ridiculous assumption on the part of your doctor.
You need someone who has successfully treated hundreds - or thousands - of patients. This guy has hung his assumptions on one single thing that sometimes is a clue but, often, is not.
I read something quite awhile ago when I was researching bands that stated that even Steere said 18 never shows up in controls. Scotland revised reading of the WB to include band 58 as a specific band. Search on the internet or here for more info on that. I'm positive I posted info on that here at lymenet.
btm wrote: I'm not sure if he belongs to or follows ILADS protocol. No P450 testing, no HLA DR4 testing, only abx and lab work, very few supplements. Sigh.
The things that you mentioned are not hallmarks of whether a doctor is ILADS or not. It is more what Keebler stated about education and treatment philosophy.
From what you said you've only been on Doxy for a few months and feel much worse on it. That is the typical response of a lyme patient.
Perhaps your doctor thinks you are having a reaction to doxy and that is why you feel worse? In any case, I think an ILADS trained doctor would try other abx if they thought doxy was not working.
The idea that one would feel better after a very short time on one drug (doxy) is not the norm for an ILADS trained doctor but sounds more like what most IDSA or non-ILADS doctors think.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Backing up a bit - here's a basic intro. I thought I'd probably posted this for you at some point but from what you ask I'm not sure you've seen some of this yet.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
posted
So far 6 antibiotics, including doxy, have utterly failed me, and I definitely have Lyme. It would be absurd for this doc to assume you don't have it based upon unresponsiveness to 2 of them.
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quote:Originally posted by charlie: [QB] doxy is no panacea for TBDs.......
you need to try another abx combo and if the doc isn't willing to co operate, you'll need to get another LLMD.
Ditto, ditto, ditto!!!
You're still herxing, for gosh sakes!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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btmb03
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posted
Thx guys - yeah it does feel like a herx though my dips are still waaay bigger than my "hills". But I guess it's a no-go with doxy right now.
Adam, so sorry so many abx did not work for you. I feel almost let down having to quit doxy so early..it's been my first and *only* lyme drug to date.
Terry, I see what you mean, in the graph it *does* show the bands I mentioned much more significant than the controls/syphillis. How come this info doesn't get translated to the real world of MD's?
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Dawnee
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I haven't read any of the responses but I've been on Doxy for 4 months now and I still feel like crap. My joints hurt, muscles etc. It kinda comes in waves as to the severity of the joint pain and stiffness. I didn't have this pain before starting abx 11 months ago (zith first, then Amox now Doxy) And I'm CDC positive and still feeling like crap. But I'm getting better in other areas. My heart issues are almost completely gone thank God. My muscle twitches aren't near what they were. My central nervous system issues are a lot better. So it IS helping something.. but I think the joint stuff is really dieoff.
By the way.. to ME and what I know, your results are pretty specific to Lyme. I'm assuming the doctor you are seeing isn't an LLMD based upon his reaction.
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btmb03
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Dawnee, don't know if he is ILADS doc or not. I'm glad you've seen some progress on doxy albeit small. I too had fewer muscle twitches.
Your response to doxy is/was eerily similar to mine with increased joint pain, feeling horrible.
I will truly never know if it might have helped me in the long-run or not since I'm swtiching to another combo. Thx for your input!
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Geneal
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Member # 10375
posted
I am not sure what a "positive" response means.
For my LLMD that would mean a herx.
I agree with Tutu. Seems like you are still herxing.
Maybe some babesia symptoms too.
What about thyroid?
Adrenals?
No supplements?
Add in some magnesium.....see if that helps the heart.
I think you need to very carefully evaluate what you need from this doc.
Then ask yourself if He/She is giving it to you.
My LLMD said from the beginning that he would never give up on me
And my treatment, as long as I didn't give up on him.
I herxed for the first two months on doxy.
Felt so much worse than I did before.
Prior to doxy I felt as if I were dying.
It took a long time.
I am 29 months into treatment and still am not in remission.
Have babesia and bartonella as well.
You need someone who has more than one protocol for treatment.
Someone who is willing to "listen" to you and manage your care accordingly.
I didn't do well on rifampin....Most here did.
I couldn't take minocycline. A lot of folks here can.
Treatment needs to be individualized for you.
Hang in there.
If this doctor isn't even considering co-infections,
Then how can he expect you to be "cured" without treating them?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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robi
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Btmbo3 .... SOunds like a new LLMD is on order. It is true that other things can make us sick but it alos sounds like your doc does not recognize a herx and is not willing to keep rotating abx until the right combo for you is found.
DO not be discouraged there are docs out there help.
I have a question for you that is better asked privately.. Can you email me? [email protected]
thanks
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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btmb03
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posted
Geneal, Robi, thx for your responses/feedback - points very well taken. I'm going to start the new combo and see what happens.
I don't want to give the impression this doc doesn't care about his patients, he truly does, perhaps I'm one his more "challenging" ones!! Oh and the hugs..Geneal, badly needed.
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![[Frown]](frown.gif)
and *badly* need your support and encouragement. The past few mths I've been on doxy and generally have felt much worse on it...worse joint pain, sleepy, all that.
![[Wink]](wink.gif)
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