posted
Ok, nothing is ever brief or clear when dealing with Lyme disease, but I will attempt to keep this clear.
My history with this is long, but to sum it up, I had several tick bites as a child on Long Island, developed swollen knees (diagnosed officially when I was 12 with "water on the knee") and chronic sinusitis as a child.
In college I developed horrible insomnia, anxiety, myoclonic jerking, IBS, severe fatigue, memory loss and feeling "foggy".
Whenever I took antibiotics during this time, my knees would swell up, all my symptoms would get worse, and I'd run a fever.
This is all pretty well documented. I even have a picture of my swollen knees after a Zithromax pill.
If that's not a pretty clear case of chronic Lyme, I don't know what is.
So imagine my shock that after $4100, three days of neuropsych testing, (revealing severe memory problems) and a full examination by Dr. F. up at Columbia, I get back a report that basically tells me to give up taking antibiotics, and start taking a bunch of antidepressants and things like Depakote and other psychotropic drugs instead!!!!!
They actually state that after 2 years of orals, all the Bb should be gone from my system and so it is reasonable to pursue other directions and stop treating Lyme.
Now, I am boiling it all down. But, is THIS what LDA and all of us have given them 3 million bucks to say?
At first, as you can imagine, I was very upset. Especially since my LLMD wants to sink a PICC line next week for some serious I.V.
Then, I began to wonder. Are they right? Is this the most reasonable thing to conclude at this point? Is treating for years and years with high intensity I.V. really, after all, madness, considering lack of good, reproducible evidence that it works?
What should I do? I'm generally not an hysteric, but I'm freaking out here. If Dr. F. and co. tell me to give it up, should I listen?
Just as an added thing, I posted a few days ago that I was having a good response to oral Mino and Plaquenil. I was. I was also running fevers and my knee was locking up. I was feeling better.
Now, however, a few days later. I am feeling much much worse. My sleep is worse than ever, my anxiety sky high. A herx? Or just getting worse? Do I listen to Dr. F? Or my LLMD?
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi BB~ Sorry for your frustration. I was evalutated by Dr. F in March of 2005. At that time he determined that lyme was the likely cause of my issues and suggested IV antibiotics since I was so ill.
I improved greatly, but didn't get well. Just recently I was tested for viruses and have high titres so I've started Valcyte, an anti-viral drug.
Before you put in an IV line, get yourself tested for viruses (HHV-6 and EBV) at Focus Diagnostics in CA. Chronic viral infections can mimic chronic lyme infection.
posted
Well from what I understand, if you just took an antibiotic that works on the regular spirochete form, no wonder it came back. You HAVE to use another antibiotic that works on the cyst form at the same time; otherwise all you've accomplished is to drive the spirochetes into hiding, and they'll come out and reinfect you once you stop abx.
Tindamax is what my doc used on me, and it seems to have worked well.
Posts: 131 | From PA | Registered: Aug 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi BB-
that's a difficult place to be- getting fundamentally different answers from Dr. F and your LLMD. i can't imagine- especially with an immediate decision to make about IV's .
I did the tests/was evaluated by Dr. F early last year. his findings were in complete agreement with my llmd's.
IMO, Columbia's/ dr. F's neuro-psych tests are very reliable. they are specifically designed to separate out cognitive deficiencies caused by Lyme from those caused by depression, etc.
for example, do you remember having to tap on the calculator type gadget keys as quickly as you could?
the dr who administered the tests told me that people who were clinically depressed simply couldn't and didn't tap quickly. Those with lyme tapped as quickly as "normal" people.
The other thing to add is that Dr. F's underlying speciality is psychiatry.
have you spoken with your llmd about the results? maybe your llmd and dr. f. should confer?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Thanks Timaca, Dilly, and Billclo, that helps. I never did take cyst buster drug, I haven't been on a cyst-buster (my current LLMD says I've been undertreated), and I haven't been checked for viral infections.
In fact, I DO remember tapping on the keys Dilly, and I'm looking at the result, it says that my finger tapping speed was significantly faster than normative levels for both hands... so I guess that's good. That shows that it's not normal, standard clinical depression, right?
So why, oh why, do they end up suggesting dropping the Lyme treatment in favor of psychotropics?
It's a tough place. Thanks everyone for their opinions. I really need them right now.
Can't answer as to Dr. F but as far as plaquenil goes my husband was an absolute bear for a couple of weeks when he started it. Hoping this is just a herx and you start feeling better.
Posts: 984 | From San Diego | Registered: Nov 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
BB, IF I were you,,,try the IV's if you can,,,if your LLMD is willing to do it,,and try that because otherwise you will ALWAYS wonder,,what IF????
Then get your LLMD to give you the cyst buster either with or right after so you can cover all the bases!!
Dont know why all has happened to you with the goofy suggestions,,,but try try again!! DONT give up,,,that is a black hole thats hard to crawl out of!!2 cents worth of --just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
This may be due to results that were not that impressive from his long term study. And it was a pretty rigorous study.
However, he hasn't really followed the specifics of your treatment. I think there is room for your doctor to continue treating you, so long as you demonstrate some response rather than just the 'plateau.'
Did you mean (above) you had not been tested for coinfections?
I would keep my test results as an objective finding supporting your illness. But even within any specialty, doctors don't always agree on the best way to treat, and determining an end-point in lyme treatment is murderously hard with no tests to guide you. Therefore, while I think Dr. F's testing is gold, I'd tend to trust my LLMD's opinion over his about whether to continue treatment.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
plaquenil IS a cyst buster.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Your reaction to the mino and placq sounds like antibiotics are what you need right now. Just my opinion, and it sounds like your LLMD agrees that you have been undertreated.
I say...go for it! The sooner the better. Give yourself six months or so, and I will bet that you will be feeling better.
It would be interesting to question Dr. F as to his opinion. But as someone else said, he hasn't really followed you from the beginning.
Get started and keep us posted on how you're doing!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"But, is THIS what LDA and all of us have given them 3 million bucks to say?"
Why not call your LLMD and ask that they contact the center... and see if they could come to a consensus on your case before you decide to move forward in any direction?
That is a very reasonable question and deserves their attention.
posted
I would definitely do the PICC line...it sounds like you just arent done w/tx. Why not continue w/ antibiotics and also take something like seroquel...I take it to help me sleep, but it is also an anti-psychotic (according to my LLMD). Don't turn back now!!
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posted
I'm gonna catch alot of crap on this one. BUT,i agree with Michelle,lyme has been proven to be a persistent infection in some. EVERY,study so far,has got there money and then said lyme is cured. Look at the Klempner study,for the longest time,lyme was worse than congestive heart failure. Give them some money,they get pressure from the IDSA,and lyme is cured easily. People here have been on long term antibiotics for years,and some have died due to the complications of lyme disease.After years of treatment. Dr. Fallons study didn't even call some back like myself that had spect scans,and positve tests. And i know a few more,who got the same response. ALL,of the time he is doing spect scans,and the whole time he is stateing they cannot be diagnostic for lyme disease. Does he see paterns or not? If so it should be a legit test,mine are clear 3 months after iv treatment.Four or five months later im positve again,ive had about 5 spect studies.And numerous rounds of iv treatment.I have also recieved steriod injections at the begining of my illness,as the neuro swore it was a bad back disc,so he injected my spine,and i got very sick. Just one time some study needs to take in people that are still chronic,after years,and find out why.There is nobody nuts enough to spend ten years or better sleeping for hours,and being realy sick constantly. That is not psychiatric,that is medicle illness. Fallon cant step over the line,he is in a teaching school,money should go to lyme doctors,court costs,etc.as Bettyg said. Teaching schools have got us nowhere,doctors with lyme knowledge in small offices have saved our lives.Just my opinion.And i've been following the lyme movement on the pc since 1995. Massachusettes General Hospital,lyme forum. And back then my spouse had emailed,numerous agencies,and spent many hours teaching about the dangers of lyme disease. We spent tons of money and time sending packets with medicle journal articles to doctors,in the next 3 counties.It took years and thousands of dollars,and didnt change a thing. People in the far east,and far west in the US. at least have some good doctors.ALL,the lyme suffers in the middle of the US.are not very fortunate as lyme is spread out and is not recognized very much at all. Take the antibiotics if your LLMD tells you,you will know when you are symptom free.You will have a life again.And it doesnt take millions like Columbia recieved to figure that out.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
Well, thanks everyone for weighing in. It really, really helps me. Sorry in advance, this is very long, but feel free to skip to the end...
I am starting to calm down from my first initial shock at seeing such an unexpected stance from Columbia. This is Lyme, of course there are wildly different opinions from the 'experts' about it.
Parisa, I think you may be right. I think I'm all shook up right now cuz I'm herxing. I actually feel a little better today.
Don, too right. I would always wonder if I never did the I.V.s... but it's not something to be done lightly; they can be dangerous. There have been some deaths from IV too.
Michelle, sorry, Lyme-brain, I meant to say, I have not been tested for viral infections. That is certainly something to look into.
As for testing, and co-infections... yes, I've been extensively tested. I won't bore you all with specifics, but let's just say, 2 CDC positive Lyme Western Blots from IgeneX. Babesia positives from IgeneX. (And yes, I was on Mepron and Zithro for 5 whole months).
Bartonella PCR positive from MDL. Every other lab test is negative for everything (although my CD 57 count IS abnormally low).
As part of my $4100 workup at Columbia, they ran a Lyme Western Blot from Stony Brook and it came back "Indeterminate".
Antibody tests at Columbia's own labs for Babesia and Bart were negative.
Columbia also sent my blood to MDL for a PCR for Lyme: negative. They also ordered a MDL ELISA for Lyme C6 peptide: negative. They re-ran the MDL PCR for Bartonella, (which had been positive in '05): negative. But I had been on a month of Levaquin when they tested me... so again, who knows?
SPECT scan run at Columbia in '05 shows severe hypoperfusion.
So, in sum, my Igenex tests were CDC positive, but ALL the tests Columbia ran for Lyme and co-infections were negative... so maybe that's why they said what they said.
Also, one of the doctors at Columbia told me that Igenex is considered very controversial at this point, and that Columbia won't use them... oh dear.
Anyway, the upshot is: Despite negative blood work, how could the physicians at Columbia look at pictures of my swollen knees, severe hypoperfusion on my SPECT, cognitive deficits but NOT motor-tapping deficits, herxheimer reactions to antibiotics, myoclonic jerking, tick exposure... and then recommend treating for depression instead of Lyme... I dunno. Since when has depression caused swollen knees?
Nan, Tincup, yeah, it might be good to ask my LLMD to talk to those guys at Columbia but... but, I would guess both parties would tell me in the end it's my decision. That's what makes this so very very hard.
Tincup, if I may ask, when you say, "That is a very reasonable question and deserves their attention" - which question do you mean? Sorry, I must be Lyming out.
8man12, yeah, I hear what you're saying... but I had hopes.
And, what this whole long, endless thread is asking (and asking myself I guess), is: could the academics, even the ones that we've endowed, for heaven's sake, be right after all?
Is it more reasonable to stop treating putative Lyme disease after 2 years of oral antibiotics, and start treating the various symptoms, like depression and insomnia, than it is to undertake a a rather radical course of 6 - 9 months of IV abx, which is what my LLMD wants to do?
Sorry to run on so long. I hope this makes some sense, and is helpful to some folks out there.
I posted a few days ago that I was feeling better on Plaq. and Mino. I was also spiking a fever and having my knee swell up again. That is still going on now; I'm having some fevers in the evening and my symptoms are intensifying. I'm anxious, my sleep is worse than ever etc.
The docs at Columbia don't know this... I wonder if it would have changed their opinion?
Anyway, long long post. Sorry. It does help though to type it all out. Thanks for 'listening.'
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
You mention myoclonic jerking. That is one of my main symptoms left from Lyme and it is not from depression! I was actually told by my neurologist never to take serotonin reuptake inhibitors like zoloft and paxil etc. because they will make the myoclonus worse. Just thought I would mention that. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
Hey Borrelia Brain. I would have FREAKED out on that response from Columbia! I'm glad you posted it.
just don and julz gave good advice. Yes, a picc can be a way for bacteria to enter your body but I know someone who had the same picc for 18 mos and no problems at all. Just keep it really clean. Do everything you're advised to do. Carelessness is unacceptable no matter how lousy you might feel from herxing.
Yes to the cystbusters.
8man12 I couldn't agree with you more! What we need are long-term follow up studies of people on abx and then we could somewhat gauge which treatments seemed to work best for people who presented with certain clusters of symptoms.
Bb, do you know in what state you were bitten? I'll tell you why in a PM. If you're interested, send me a PM.
Posts: 422 | From Luck home | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
You may remember how rigorously Dr. F screened for his long term treatment study.
I believe he relies HEAVILY on labs.
Now, that does fly in the face of clinical judgment.
However, even knowing the bacteria can sequester and hide, I bet he would be more comfortable recommending further treatment if there was some kind of continuing positive indication on current tests.
To some degree, while a staunch lyme advocate for us, he also appears at times to be keeping to a somewhat conservative stance. I do not think that's a bad thing, as he is less vilified that way and able to substantiate everything in concrete!!
The main thing that came out of your Dr. F study was, IMO, the SPECT scan. I think it is priceless for many reasons.
And while it's true it is not diagnostic only for lyme, paired with your prior tests it's really pretty good objective evidence.
I believe that NOT all lyme problems go away. In spite of rigorous treatment. So I think it is possible to have continuing symptoms despite one's lyme being beaten into submission, or mostly so.
However, determining what's permanent damage vs. what's still treatable is a decision best left to you and your doctor.
Having NOT fired all your big guns yet (perhaps far from it), I'd be inclined to do IV. Your hypoperfusion and other problems indicate it.
Then you will be in a better position to judge how much better you might still get. Till then, I'd be disinclined to accept "severe hypoperfusion" as a done deal, which Dr. F seems to be indicating.
I bet, too, that if your LLMD talked with him and filled him in on some of the details that were omitted, he might see it differently.
I am sending a hug to you; it's a hard decision...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Do the people at Columbia not believe in the cyst form? Or do they not believe metronidazole or tinidazole are sufficiently proven to treat it?
I went to Colmubia for a SPECT scan a couple of years ago, though I saw Dr B, a neurologist in the Lyme Disease Research Center there, instead of Dr F. She recommended IV based on my SPECT scan even though my blood tests were negative, but never mentioned following it up with a cystbuster. Dr F also prescribes IV Rocephin, but no cystbuster, and then was surprised when all his patients in his study relapsed within 3 months.
So do they not believe in lyme cysts, or cystbusters? Have any of his patients ever asked him this?
Posts: 172 | Registered: Dec 2003
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
BB-
all the clarifying information you've added since your first post helps me understand your bewilderment a great deal more.
Keeping his patient's interests first is Dr. F's first responsibility, whatever very visible and dicey "political" position he may be in as head of the new Lyme research center.
Personally, i don't doubt that he is aware of that responsbility and honors it- in other words, i don't think he gave you a diagonosis based on his own convenience, or out of ignorance, academic or otherwise.
I think Michelle gave you a very sensitive and nuanced reply. I do disagree with one thing she said, which is that Dr. F relies a great deal on labs.
For my evaluation anyway, that was not the case at all, and in the 3 hours or so I spoke directly with him one on one, he made it perfectly clear that he views clinical info as central to diagnosis and tx.
As Michelle said, your SPECT is "priceless" as evidence of how Lyme had damaged your brain in 2005. I take it that the 2 years of treatment he thinks should have been enough came after that SPECT? So he isn't ignoring that SPECT.
If I understand what you're saying, you think that since your LLMD and Dr. F would likely leave any decisions to you in any case, why have the two confer?
They SHOULD leave tx decisions to you, IMO. But since the difference in opinion between the 2 of them is so huge, don't you want the 2 of them to talk with one another so you can hear for yourself exactly how and why they are disagreeing?
i don't see how you can make an informed decision without that understanding.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Since you asked, here are my thoughts on the subject. Some will not like what I have to say, but the question was posed, so here goes.
The recommendations aside, a question that you need to ask yourself is whay did you go there in the first place? If you when there to get a confirmation that you have Lyme, that is the wrong answer. It is a very wrong reason to go.
If in the other hand you went there to have them assess you for the possibility of having lyme and have them use there experience in providing that assesment then that is the right answer. It is the reason you should have gone to see them in the first place.
If you went for the right reason, the response that they provided should be acceptable to you.
ie...It is their opinion based on their experience and I would think has been provided in the interest of saving you the expense of further treatment that they feel would be of no use. They may be wrong but thay may also be right. I am pretty sure that they know they may be wrong but the recommendation would certaibnly have considered that possibility (see the upside and downside of their recommendations below)
If you don't mind me stating an observation, you appear to be very upset about being told that you no longer have acute Lyme. If this was stated by some ID that was following the Klempner protocol then I would discount it, but the people that said this are as far as I know quite knowledgable about Lyme and thier opnion shoudl carry some weight.
Lets assume that they are correct, there are a few things that might be happening to cause what you are seeing. The knees may be the result of long term exposuire to Lyme where you have developed antibodies that attack tissue, on an intermittent basis when the immuue system gets turned up due to exposure to some sort of infection. Also as someone here mentioned, some viral infections can also cause this to happen.
If the swelling occurs on a regular basis, monthly or so then I would guess you still have Lyme. If it occurs more or less randomly, then Even Dr. B's guidelines don't support active disease. (note that Dr b's guidelines specifically mention recurrent and repeat patterned herxhiemers).
On feeling better, remember that this is a difficult assesment to make on ones own. The questions you need to ask and have answered are" Do your freinds or family see the change? Do you see any change in the level of impairment? Can you do things physical things now that you could not do before? Is there steady improvement over a longer time interval. Day to day with lyme is very hard to assess, week to week would be the minimum?
The next thing to look at is the upside and down side of stopping treatment.
First the upside.... Lets say they are right and no further treatment is needed. In this case you will be treating the symptons that you are experiencing and hopefuly alleviate them so that you can return to a normal life... If this works I would be very happy about it, You shoudl be too. You will have avoided expensive treatment, which I can assure you, is not very fun. Also if you avoid this treatment you still have the option of doing it in the future if need be. Re-doing IV later when it did not work the fist time could, quite frankly be difficult to justify. Stopping may also allow some other cause to emerge and become more detectable also as the current drugs may in some way be masking what is really going on. Also, you LLMD will not be put in the tough position of having to defend his actions, should he be questioned about them.
Now the down side... If they are wrong and you stop treatment, you will relapse. This I dare to say is fact. With lyme it will take a few months to get really bad but beforwe you reach that point you can restart treatment, perhaps with more aggressive protocols.
I have on several occasions been asked If I wanted to stop treatment to see what happens. This was asked by the LLMD, and was based on his expereince. In all cases I said yes, I'll try it with the provision that If I relapse, that we start again so that I can at least maintain my quality of life.
Unfortunately for me, In each case I relapsed... One thing that is absolutely sure. If you relapse, there will not be any question in your or anybodies mind that it is happening. the only trick is to make sure it that it is addressed before you relapse to far.
In this regard, remember that if you have had lyme for most of your life, a few more months is not going to make that much of a a difference in terms of the long term damage that has already been done. So even if it comes back, asside fromnt he short term disability that results, the long term effect would be small relative to the past.
Well there you have it. Remember anybody can be wrong, this includes the columbia people AND your current LLMD. You have to make a decision based on the pro's and con's associated with the decision options.
In this case if I were in the same position I would try to stop and see what happens but before doing that reach an agreement that if things go downhill and still look lyme related that a re-assement (including all the differentials) be done so that a treatment continuation could be accomodated.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Well, I have to say, I really must thank everyone for really taking time to consider this issue, and to write such well thought out, reasoned replies. This forum is priceless.
Yeah, mjo - Columbia freaked me out, although re-reading their response very closely, they are actually very cagey about what they say, exactly. They don't exactly say stop antibiotics, but they imply it... now, why am I freaked? A good question.
I didn't know Paxil et al. could make myoclonus worse... that's good to know hiker.
Michelle and dilly, awesome replies and good suggestions, makes me feel much better. Yeah, the SPECT is impressive. But, what does it mean?
And David, yes, indeed. Why did I go to Columbia? I did not go to be told I did or did not have Lyme, I actually didn't think that was even in question!
I went to get a detailed piece of evidence for my disability claim, actually, as well as to find out just how bad the cognitive deficits really were.
All the doctors at Columbia were actually very nice to me, and the report verifies that I can't work... I do believe they really wanted to help me. In fact, they were wonderful, really.
They also asked me why I was there, and were most interested in the answer. When I told them it was for a disability claim, they all nodded as though that made very much sense to them, as though it were one of the best reasons for going there.
So, perhaps, right now, they are not really in the business of handing out a firm diagnosis of chronic Lyme... perhaps that's too controversial right now? Or something.
But in the end, no, I am not really satisfied with their conclusions.
No doubt, I have significant depression, insomnia, and anxiety. No doubt, treating that would be helpful.
What it boils down to for me though, is this: if, with all my symptoms, classic as I thought they were, the SPECT, the positive tests from IgeneX, the fevers upon taking abx, (I DID tell them that I run fevers upon abx), the swollen knees, the myoclonus, the insomnia, the cognitive deficits, the arthritis in my fingers and toes only upon taking abx (also told them about that), if, with all that, this is not considered a case of chronic Lyme by the Columbia Lyme Center, then what is?
Is there such a thing as chronic Lyme, and are antibiotics helpful for it, or, as all the 'ducks' on the 'other side' have been screeching, do antibiotics, past a certain point, in fact, NOT significantly help chronic Lymies?
Now, maybe they know something. Maybe they know that after two years of orals (true, with no cystbusters etc), that generally, people who aren't better aren't going to get better with more abx. If so, that's depressing, and that is NOT what seems to be indicated by the stories on this board.
Anyway, I don't want to go on and on.
I have to make this decision... and unfortunately for me, timing is everything.
I have basically 4 more months of COBRA coverage left, and no hope of getting on disability or medicare for a long time yet.
So, if I'm gonna do I.V. abx, I can't just 'wait and see' if I relapse or how I do with other treatments, since I.V, apart from being no fun, is also the most expensive of all the treatments around.
So, I guess it's almost a no-brainer. Not through science or good judgment, but through financial exigencies, I will probably have to give the I.V. a go while I still have insurance, because after that, if I want I.V., I'll have to pay for it myself, impossible when even Columbia agrees I'm too sick to work right now...
But, my sad story aside, what really is going on? I find this whole thing very strange.
I don't want to discourage people going to Columbia, btw. Apparently, other people have been really helped up there. And they are helping me with concrete documentation of my impairment, which is priceless.
posted
I just wanted to add a quick update to this somewhat dispirited post.
My insurance company is actually quibbling about paying for the neurocog. testing at Columbia.
They wrote last week, asking for all the test results for further evaluation before paying the claim.
This provoked me to call the docs up at Columbia in some panic, to ask them if they really meant to say that more antibiotics would not be helpful.
Well, they were wonderful on the phone. I told them that I had taken Minocycline and Plaq. and that I was running fevers, and they said basically: "oh, you're probably herxing, and if your LLMD wants to do more antibiotics or IV antibiotics, you should go for it. And don't worry about the report, that was months ago, if you're relapsing, your current LLMD can make the case to your insurance co. for the need for more abx..."
So, they were totally supportive of further abx treatment, and they were willing to admit, on the phone anyway, that although there is currently no scientific consensus on whether 'chronic Lyme' is a post-infectious syndrome, that running fevers from abx treatment is probably a Herxheimer.
But it is true that they seem to not recommend constant abx to chronic Lymies, esp. if the Lymies don't seem to be helped by them. Just FYI.
Oh, and I now have a Picc line in, and have just started IV Doxy, and also want to report that I think Plaquenil has helped me a whole lot.
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
BB-
sounds like your path straightened out. i'm glad. good luck with the iV's.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Good Luck with the IV, BB!
That's the decision I would have made in your position, as well. Actually, I was in almost the same position a long time ago and my decision was the right one. (Had my insurance company not pulled my IV in the middle of treatment I might not be here now. Get everything from them in writing.)
I know everyone is different, blah, blah, blah but for me... I have never seen improvement with orals alone. Many, many others have. The IV is worth a shot, no pun intended.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear BB,
I'm very glad to know you went with the antibiotics!
I do work on psychiatric violations of human rights, and can tell you that the psychiatric drugs have major side effects that get played down or not mentioned at all.
Treat your illness, as you're doing.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear BorreliaBrain, Once upon a time, before Lyme ruined my life, I was a psychiatric social worker. If there is one thing I know for sure, it's that swollen knees are not a psychiatric problem.
Has anyone ever withdrawn fluid from one of your knees when it is swollen and had it tested for microorganisms? This seems like a no-brainer to me, as far as helping to resolve this issue, and it could easily be done by your PCP or your LLMD, right in the office.
Good luck, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
BB,try art, i get mine from 1stchieseherbs,,,buy the powder form,and 00 capsules,for 20 bucks you get enough high quaility art for 6 months.Lyme is borrilleia,,BUT many other unknown illnesses come from a tick bite.Art is very broad spectrum.
henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
I am coming late to this thread -- but since you had made clear in the beginning, in response to their question, that you were there to file a disability claim, perhaps THAT colored their response to you.
I mean, maybe they wanted, within ethical boundaries of what they actually saw in you, to give you a report that was most likely to succeed in filing a disability claim.
I gather it's very hard to get disability on a Lyme diagnosis. I've been told that depression and other psych problems and chronic fatigue syndrome have a higher rate of success w. disability claims. (Note: just what I've heard, not that I am any expert or have any inside info).
But maybe since you told them that, there developed an understanding on their part of what would help you most given that purpose for coming.
Just a thought....
I'd keep on with your own LLMD's treatments. Perhaps everything they wrote for your from Columbia was for a different purpose: not fabricating anything, but writing it down from the perspective of a Disability Board's most likely response.
Posts: 1066 | From East Coast | Registered: Dec 2000
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