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» LymeNet Flash » Questions and Discussion » Medical Questions » Symptoms persist after treatment. Do I have Lyme?

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Author Topic: Symptoms persist after treatment. Do I have Lyme?
cmichaelo
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Hi,

I'm a newbie here. A Lyme strikken friend recommended the forum here. He believes I have Lyme. My PCP doesn't. I don't know what to believe anymore.

I've had the following symptoms for the last 7 weeks:
- brief moments of near-unconsciousness
- dizzy spells
- blurred vision
- minor headaches
- occasional memory loss
- occasional heart gallop and shortness of breath.

Other history:
I don't ever recall a rash. I've occasional some joint pain over the last 10 years, but it always goes away after a week or so. The blurred vision and memory loss has been happening to me occasionally for many years now, but the dizzy+passing out is new.

Tests:
I've had three Western Lyme tests done. All negative (on all counts.) Also had extensive blodwork done, B12, thyroid, anemia, parvo - I'm in excellent shape says doc.

Treatment history:
7 weeks ago, doc prescribes Doxycycline for two weeks. All my symptoms goes away during treatment. Two days after treatment stops, symptoms return.

9 days ago, doc prescribes Augmentin for 10 days to treat potential sinusitis and Lyme at the same time. Symptoms persist throughout the treatment and are still lingering.

I'm being treated by my PCP.

Do I have Lyme?
Should I see an LLMD?
Should I request another, and higher, doze of anti-biotic from my PCP?

Regards,
Michael Olsen, Westchester, NY


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richtersl
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Hi Michael,

Welcome to Lymenet.

Everything you've described sounds like Lyme.

Just some basics:

1. Not everyone gets the rash.

2. Most doctors do not treat it aggressively enough and when you complain of your symptoms returning they will pass it off as something in your head (usually applies to female patients), MS, Lupus, Fibromyalgia, Chronic Fatigue Syndrome, etc.

3. A negative Lyme test result doesn't mean squat.

If you were on doxy and were feeling better, Lyme Disease should not be ruled out.

You should get yourself to a Lyme-literate doctor in your area to continue proper treatment because Lyme Disease can knock you flat on your butt. This will more than likely mean kissing your PCP good-bye and going out of network with regard to your insurance.

I know other folks will be along shortly with some great links for you.

Linda


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richtersl
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Up
Posts: 749 | From New Hope, PA | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
Beverly
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Hi Michael,

Welcome to LymeNet.

Well... you can't be in excellent shape if you are passing out, so I don't agree with your doc.

I would see a LLMD for an evaluation as was suggested above. It sounds like a tick borne disease to me also.

A LLMD will test/treat you for co-infections and give you a proper diagnoisis. And treat you until all your symptoms are gone...very important.

You can post in the seeking a doctor section of LymeNet for a referral.

Good luck to you and keep us posted.

[This message has been edited by Beverly (edited 06 July 2004).]


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david1097
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Hi

I would suggest that Lyme be considered last on the list rather than first. There are a lot of serious, yet treatable diseases that can give you the symptoms listed.

Have you had

An MRI? and particularly a MRI angiogram?

EKG and heart ultrasound?

These a few of the easy things to do to rule out some bigger problems. If it is Lyme it can wait for a while for these tests but some of the stuff you mention could be caused by things that can be more acutely deadly and should be examined with higher priority. I would have thought that the PCP would be very interested in the near unconsciousness and dizzyness. This is an issue with driving and would at least warrant further investigation with some non invasive tests.

Also On the Lyme subject

How long after first dose of Doxycycline did the symptoms disappear? Did all of them disappear?



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cmichaelo
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Hi David,

I too was concerned about the "passing out" and dizzy spells, and I specifically asked doc if I should be worried about driving. He said, "You're in excellent condition. You have nothing to worry about. I wish I was in such good condition myself." He did mention that he might consider MRI. I'm still awaiting his decision after I reported back to him, this morning, that the last treatment with Augmentin didn't help any of the symptoms at all.

When he put me on Doxycycline 7 weeks ago, ALL the symptoms were gone by the next day. But two days after I stopped taking Doxy, the symptoms came back, though slowly.

I had an EKG done a few years ago when I was rushed to the ER with heart problems. But it was normal. Doc has listened to my heart many times, and it sounds good. He's also measured the oxygen in my blood. Good too.

I will remind him about the MRI angiogram.

Thanks for your advice. And thanks to everyone else too! I'll keep you posted.

Regards,
Michael


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treepatrol
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WELCOME To LYMENET
Heres more goody's A typical response to newcomers.
Hi and WELCOME get a LLMD or at least Dr that is willing to learn about lyme . Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck bumpy road ahead
Post for a LLMD in Seeking a Doctor. Ps remember Iam not a Dr, just a fellow sufferer.
How to Search http://flash.lymenet.org/ubb/Forum5/HTML/000464.html Danq
LymeNet Links for new members http://flash.lymenet.org/ubb/Forum1/HTML/009342.html http://www.lymediseaseaudio.com/
Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm http://www.lymeinfo.net/LDSymptoms.pdf
Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html
Making the most of your LLMD visit. http://flash.lymenet.org/ubb/Forum1/HTML/020605.html
Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html
2ndVersion Camp A Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html http://flash.lymenet.org/ubb/Forum1/HTML/024963.html
Something to share with friends and family members http://flash.lymenet.org/ubb/Forum3/HTML/008886.html http://flash.lymenet.org/ubb/Forum1/HTML/022767.html
Western Blot Info http://www.geocities.com/HotSprings/Oasis/6455/western-blot.txt http://flash.lymenet.org/ubb/Forum1/HTML/022767.html http://www.igenex.com/lymeset2.htm http://www.sonic.net/~melissk/wb.html
Drug interactions etc. http://www.drugdigest.org/DD/Home http://www.amwa-doc.org/publications/wchb/FILE039.html http://www.tiscali.co.uk/reference/encyclopaedia/familyhealth/dict/pages/h/22.html
Newbie's Lingo http://flash.lymenet.org/ubb/Forum1/HTML/002828.html
Rashes http://www.lyme.org/gallery/rashes.html
Labs http://www.mdlab.com/ http://www.igenex.com/
Co-infections Thanx M http://flash.lymenet.org/ubb/Forum1/HTML/021366.html
Herxing http://flash.lymenet.org/ubb/Forum1/HTML/000638.html http://flash.lymenet.org/ubb/Forum1/HTML/014359.html http://www.jemsekclinic.com/lyme4.php#sect11
Check Diet Link http://atkins.com/
Sexually Transmitted ??? http://flash.lymenet.org/ubb/Forum1/HTML/017501.html http://flash.lymenet.org/ubb/Forum1/HTML/023077.html
Good Site http://www.canlyme.com/
FDA http://www.fda.gov/medbull/summer99/Lyme.html
CDC http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
Legal http://www.josephromanolaw.com/english/book.html
No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH
Marnies......... http://flash.lymenet.org/ubb/Forum1/HTML/025469.html http://flash.lymenet.org/ubb/Forum1/HTML/025464.html

Help with meds. http://www.freemedicineprogram.com/


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cmichaelo
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Hi,

My PCP has now decided that the next step for me is to see a neurologist, whoom I'm quite sure is not also an LLMD.

Any advice what I should ask of the neurologist except to do an MRI angiogram?

Michael


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die_lyme_die
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Babesiosis gave me dizzyness and heart conditions as you stated. If you look up an old thread of mine here, you will see where I pleaded to lymenet members about thinking I was having a heart attack.

I personally think you have babesiosis.


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Nancy-OH
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What glares at me is that you don't mention severe joint pain. 'Minor' joint pain that goes away after a week or so isn't the Lyme I personally know.

I think if I were you I would keep Lyme in the back of my head while I rule out everything else first.

HOWEVER, that said I would like to add that my LLMD told me he can always tell where a person was bitten geographically because different strains of the disease are present in different regions.

I'd still rule out everything else first, but keep in mind whatever you have may be bacterial simply because the Doxy worked so well for you.

Lots 'o luck!
Nancy



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cmichaelo
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Nancy, and others,

I never really had joint pain, except as I stated, for a week or so. And in those cases where I did have joint pain, it was localized to one knee, or to one shoulder.

And Nancy/David, I am doing exactly as you suggest. Keeping Lyme in the back of my head, while ruling out, or confirming, other causes. In fact, I'm having an MRI, EEG and EKG done next week...all at the suggestion of my neurologist.

Some other things that may interest you:

I'm frequently "spaced out", and can not always easily be "brought back". This spacing out can happen any where and any time. I've found that on those days when I'm prone to "space out" I also have trouble concentrating and remembering. Even though I'm more likely to "space out" when I'm tired, it can also happen when I'm well rested.

Today, I noticed a prolonged numbness in my arms and hands. This has happened to me before, but more so lately.

In retrospect I now realize that I have always had a tendency to "space out". My mother and my daughter have the same tendencies, and also have trouble concentrating and remembering occasionally. Someone told me that this "spacing out" could be hereditary and that it could be a mild form of epilepsy. Or could this also be a Lyme symptom?

Michael


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cmichaelo
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Over the last few days I've started loosing feeling in my arms and hands. I can pinch myself hard and it doesn't hurt. I'm also starting to become tired late afternoon, and I'm generally low on energy. Are these more symptoms of Lyme?

I'm currently seing a neurologist who wants to wait for the outcome of a series of tests (MRI, EEG, EKG, Glaucoma) before making decision for treatment.

I'm getting concerned that since I seem to be getting progressively worse, that I'm doing myself more harm than good by waiting for the outcome of these tests.

So my question is, assuming that I do have Lyme disease or related infections, is it generally safe to postpone the LLMD visit by 2-3 weeks?

Michael


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Monica
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Michael, I'm curious to know what your neurologist's opinion of Lyme Disease is. I saw a neurologist who did not believe there was such a thing as chronic Lyme. That was the last time I saw him.

Getting tested and finding out results is a good idea, but what is your doctor going to do with the results -- especially if they show "nothing?"

I ask this because it happened to me and to a lot of people on this board.

Make sure you get copies of all your test results so that you have them readily available if you need to see another doctor.


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Corgilla
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Michael,

It seems you've gotten quite a mixed bag of answers so far.

If you have had Lyme disease for a long time, it probably wouuldn't hurt to wait a couple of weeks before seeing a LLMD.

Your original question was asking if we think you could have Lyme Disease. Most of our answers were "yes" or possibly another Tick Born Disease such as Babesiosis.

You live in a hot bed of TBD's. You mention text book symptoms for Lyme disease and Babesiosis. If you really want to know if you have Lyme disease, see a LLMD. They are the ones who know all the right questions and have a lot of the right answers.

One of the links that was already posted (Dr Burascano's guidelines) has a list of many of the possible symptoms. You'll be amazed at what can go wrong when you've got this disease.

The only other thing I want to say is that I don't agree with Nancy when she says that the joint pain has to be bad if you have Lyme. I've got 4 TBD's and only have short term minor joint pain from time to time.

Every single person is different in how their body deals with the infections.

Good Luck to you. Please seek help from someone who knows about Lyme if you think you may have it. The average PCP, ER, Neuro doc does not know squat.

Corgilla


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danq
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Michael,

Based on your symptoms, and the fact that you responded positively to the Doxy, I'd say that there's a very good chance you have Lyme.

If I were you I would go see the LLMD, as soon as possible. Don't wait for results from the other docs - that waiting, delaying game has virtually no end and the longer Lyme is active in your system, the more likely you will have permanent neurological damage. Weeks do count. Do not delay.

Dan


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cmichaelo
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Thanks all for your help.

I had an MRI of the head done yesterday. Looks normal, except for some sinusitis in the lower right side.

I'll be seeing my neurologist next wednesday where he'll do the EEG and combine it with the other results of the MRI, EKG and glaucoma. I don't expect him to find anything that can explain all these symptoms. I'll make sure to ask for his opinion on Lyme and get a copy of all the results and diagnosis.

In the mean time I've been shopping around for an LLMD in my area. Appears to be three of them. All recommended by [email protected] (cheryl). I'm calling them today to be proactive.

Michael


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crmc
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Some of my first major symptoms were dizziness, heart palpitations, headache and very spaced out/brain fog feelings. I had very little joint pain in the beginning and it was
localized to one or two joints.

I tested positive and was treated for Babesia and many of those neuro symptoms and heart symptoms went entirely away or greatly improved.

I can't tell you for sure that what you have is Lyme or Babesia, but I would definitely consider it. Numbness in my feet, hands and face came on a little later along with alot of other weird, unexplainable symptoms.

I am hypoglycemic (low blood sugar) so many of my dizziness, heart palpitations, foggy head feelings was blamed on the low blood sugar over the years.

Now, I am not so sure. Because I now know the Lyme will do the same thing, and antibiotics, not a better diet has taken many of those symptoms away for me.

I have been bitten by many ticks, but never got a rash and never tested positive on a Western Blot.

This is a very complex and strange disease. Most of the doctors I saw in the beginning knew very little about Lyme. You need to see someone who is knowledgeable.


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duke77
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I too never had a positive Western Blot test. I did have two positive PCR tests from Igenex. Your symptoms do sound like Lyme symptoms. I know most of them too well. As far as bloodtests are concerned Lyme doesn't really affect your CBC or other blood test results. This is the reason so many ducks have told me that it was stress, etc. because on paper you appear healthy. Even when I was feeling at my worse it didn't show on any paper test result. This disease sucks because on the outside most appear normal and healthy, what most can't see is how you really feel. Many mainstream medicine doctors put down CFS and Fibro as BS diseases for lazy people they act like I am making Lyme symptoms up or over exaggerating how I feel.

I have to disagree with Nancy as well, Lyme can cause minor pains in the large joints such as the knees without arthritis present. Matter a fact, my LLMD says knee pain that comes and goes is probably the most common symptom they get.

I do agree with Cave it can be dormant causing minor or no symptoms until something triggers it. From past symptoms I feel like I have had Lyme years prior to being diagnosised.


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cmichaelo
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Duke, Cave and others,

I actually suspect that I have had Lyme since 1990 when the symptoms first started appearing. The symptoms where brief however and rarely coincided with one another, as they are now. For example, I would have near total numbness in my foot for a month, but no other symptoms. Then fine for months. Then knee pain for a few days. Then fine for months. Then blurred vision for half a day to the extent I could not read a computer screen. And so on. 8 weeks ago, however, all these various symptoms (except the joint pain) started occuring at the same time, and have not let up since.

I've always been in good health, from a paper perspective. I basically never get common diseases like cold, flu, etc. And I have two little kids in daycare.

So if someone has a good imune system, would that make it more likely to suppress Lyme, i.e. making it dormant, so that it only surfaces now and then when my imune system suffers a setback due to stress, or something emotional?

Michael


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cmichaelo
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Cave et al,

Just made an appointment to see an LLMD tomorrow, namely Dr. C from Mt. Kisco, NY. He's one of the ILADS directors.

Then I informed my PCP that I needed my medical records to see Dr. C. My PCP knew of him and strongly recommended that I did NOT see him. In fact, he said that he would no longer be my PCP if I saw Dr. C and that I had until Sept 1st to find another PCP.

Does a PCP really have the right to do this?

Anyway, I told him that I was seeing Dr. C. My PCP then proceded to convince me not to see Dr. C, and used the following line of argumentation to support his view:
1) Dr. C is a self-proclaimed Lyme specialist.
2) Would a successful Lyme specialist really be able to see you in one days notice?

I didn't even try to defend my position. I had nothing to gain by arguing with my PCP. So I just asked him if I could have my records by tomorrow morning.

Has anyone else used Dr. C in Mt. Kisco, NY? He comes highly recommended by Cheryl from [email protected]. And of course, the fact that he's a director of ILADS which has other well known LLMDs, is comforting too.

Michael


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David95928
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Michael,
I'm pretty sure I know who you are writing about. First initial "D?" If so, he is highly respected, I'm on the opposite coast but called his office to inquire about a Bicillin study he was working on. Amazingly, his receptionist put me straight through to him and we spoke for about five minutes. This was when I was first exploring the possible diagnosis and treatment approaches. He said that in his opinion, the medication I was asking about is great stuff and, a year and a half later, I concurr.
I really don't know any more except thet he has gotten research grants from the Lyme Disease Foundation and is a regular presenter at conferences. He also seemed very nice.
In my opinion, your PCP is way out of line and would/will impede your treatment. If it were me, I'd ditch him.
Good luck with your appointment. Hopefully it's with the Dr. C I have been writing about.
David

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cmichaelo
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Ok, so I saw Dr. C today. And yes, Dave, it is that Dr. C with initial "D". Briefly, he did think I had Lyme, just based on the symptoms. He prescribed Doxy for 4 weeks, 300mg/day while waiting for lab results. He's testing for the four-five most common co-infections. We agreed on Stonybrook for the lab for the initial testing. It's covered by my insurance. Not the best lab he said, but if the results are negative, we can go one more round with IGeneX. But that'll cost me >$1000 out of your pocket. Any of you get insurance coverage for this lab?

He really likes Amoxy but decided to use Doxy since I apparantly responded so favorably to it on an earlier treatment.

I may postpone the Doxy treatment until after my EEG test (next thursday), if my neurologist thinks it may interfere with the test.

Michael


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cmichaelo
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Cave,

Dr.C and I did discuss the issue of a negative result from Stonybrook. And several issues came up.

1. He initially recommended IGeneX, but also suggested Stonybrook since it's covered by my healt plan (Aetna.) And Stonybrook is still better than Quest but not as good as IGeneX (he didn't mention MDL or Bowen.)

He's also testing for other co-infections. I believe Quest is handling this part. Is it also important that testing for co-infection should be done by IGeneX?

2. If the Lyme test, and other tests, come back negative, I can always decide to try IGeneX. Dr.C thought that was a reasonable approach.

My only concern with this approach is that by the time I decide to do IGeneX, I'm already well into my Doxy treatment, which will increase the likelyhood of a negative result from IGeneX, right? But I'll worry about that then. That is, if we deem it crucial to get a positive test result.

3. Wrt to insurance coverage. According to Dr.C, most treatments he prescribes is covered by my drug plan, and they generally don't ask questions about test results, at least not when it comes to pills. The exceptions are wrt IV, or if I have to be hospitalized. In that case, it's probably my health plan that I have to deal with.

4. Wrt to Stonybrook, it's actually handled through Quest. When a doctor uses Quest for Lyme testing, Quest themselves do the test (or rather, they have a deal with some lab facility to do the test.) In the case of Dr.C, however, he has negotiated a deal with Quest where they send the Lyme test to Stonybrook instead of their usual lab. Generally, wrt the WB test, Quest doesn't test in all 16 bands, incl bands 31 and 34, where it's most likely to get a positive result. But Stonybrook DOES test in all 16 bands. I think I head Dr.C say that only the WB tests will go to Stonybrook. Co-infection tests is decided by Quest.

Michael


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cmichaelo
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I had the first "check up" with Dr.C, LLMD, after 10d on 400mg Doxy. The lab tests came back from Quest and Stonybrook. Negative WB (one band positive), negative co-infections.

But my symptoms persist, and some new have shown up. My joints are starting to feel sore (knees, wrists, fingers and near ancles) and my eyes are hurting and "watering". Fainting fits are getting worse and I'm more tired. I told Dr.C and he was rather unphased by it. "Nothing abnormal about it. Treatments don't always work fast. Let's wait a little and see if it kicks in." So I'm waiting...

...but wondering if I'm experiencing some form of herxing? Or is Bb marching forward?

The fact that I responded so favorably to Doxy at an earlier occasion, but that I apparantly am not responding to it now, worries me. Is that normal? (Dr.C wasn't surprised to hear that but couldn't explain it. Told me to be patient.)

So I still don't know if I have Bb, or cousins, for sure...

I'm getting depressed bout the whole thing. Starting to impact my work performance now and my family is suffering too.

I'm trying to hang in there. Not like I have much choice. I know many of your have it a lot worse. And it's soo encouraging to hear that you stuck it out and conquered. Hope you're all doing well.

Michael


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tabbytamer
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Michael,

Sorry you're having a rough time but it sounds like you are herxing. Which is good, if that is what is happening, because that means the Doxy is working still for you.

I'm glad you mentioned these symptoms to your LLMD. It is always best to keep your doctor informed of how you are responding to treatment.

Try to hang in there. Drink lots of water to help flush toxins out of your system. Try to get as much rest as you can though I know that is difficult while working.

Some members have had their family members sign on here and ask questions. Maybe that would help your family get a clearer picture of how they can help you recover?

Let us know what we can do, okay? But above all else know that you are moving in the right direction. Things will get better.

Tabby


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HaplyCarlessdave
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If you're into more tests, you should use the labs:
Igenex (CA)
or, Bowen (FL)
Igenex apparently uses the western blot, which has become more or less standard, but they are more careful interpreting rsults than "aquatic avaiarian labs".
Bowen uses an inovative approach where, apparently (I'm no expert...) they concentrate the antigens and expose them to antibodies (for that antigen) that are marked with a fluorescing dye- then the samples are esposed to radiation of the appropriate wavelength for fluorescence, and they take micrographs of the result- the result is, proteins from the lyme (or whatever antigen is being tested for) that attract and combine withthe antibdies become coated with fluorencent antibodies, thus, become highly visible in the micrographs.
The pictures are pretty convincing- you can even make out the "spirochete-like shapes" of the images. in many cases.
DaveS

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Mo
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Hey..

Just want to add that I too had only one band showing on my test from Stonybrook, (happened to be band 41) this when I had rapidly progressive nurological symptoms, a couple of months after an erythra migrans rash (diagnostic of Lyme in those who get them.)

I also have Babesia, Bartonella and Mycoplasme (those showed up on PCR from MDL, but not for a while..after several "tries"..)

Wanted to point out that the testing is woefully innacurate, though a good tool to look at in the big picture..along with symptoms, possible exposure (living in endemic area) and response to various abx therapies..

Then there's brain (SPECT or PET) scanning and nuropsych testing (with Lyme Literate Docs)..both of which absolutely confirmed my infection.

I wanted to say that since the WB from any lab shows antibidies to the disease..oftentimes the Lyme patient with few or no antibodies showing are the ones most ill..as there body is not able to produce antibidies..or put up a fight.

This can happen in some cases because of co-infections, or if you have in fact been carrying the disease for some time. In some there is a genetic marker (HLA panel) that is said to contributr to this.

Check out the seronegativity file at Cheryl's site..

Mo


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cmichaelo
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Tabby, Dave and Mo,

Thanks for the advice on the sleep. I most definately do not get enough of that. I'm ok with O2 I think.

I would really like to get a positive on my Lyme or coinfection tests. So I suppose that from that perspective I'm "into tests". On the other hand, I'm pretty convinced that I DO have Lyme and have had it for many years, though experiencing only minor symptoms.

Here's another update:

This morning I had a checkup with my neurologist. I told him about my new symptoms, and I think because I mentioned joint pain, that he's now thinking about Lyme too. (Btw, he's aware that I'm seeing Dr.C LLMD. He doesn't approve of it, but at least he didn't react like a child like my PCP did when he found out.) Anyway...

...the neurologist wants to do a spinal tap to determine if I have Lyme and also to double check MS. I immediately asked him which lab he'll be using. He said "Northern Westchester Medical Center", but then added that he'll send to any lab of my choice and do any tests my LLMD may suggest.

I have not spoken with Dr.C yet about labs and tests, but in preparation of this I'd like to ask your advice.

- Is the lab important also for spinal tap? And is IGeneX the preferred lab again?

- What other tests can be done on spinal fluids? E.g, Coinfections, degenerative disorders, signs of oxygen deprivation?

Michael


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Mo
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In looking at CSF to "proove" Lyme itself with positive testing (via DNA testing or anribodies) the yeild is very low (something like 10-20%).

This is something you really have to discuss at lenghth with your LLMD. There is allot to consider.

While also partially treated, the yield is even lower.

However, CSF study can be used to rule out some other disorders, and other levels (such as protein levels) can be looked at to analyze the situation.

Our LL neurologist ( Doc K located in CT) checks all these things, plus sends the fluid to MDL foe the complete Lyme and co-infection PCR panels.

In my sons very clear cut, rapidly degenerating neurological condition, and also off abx for two weeks prior..nothing showed up as far as the Lyme and Bartonella all our LL's were sure he had raging at the time. They knew this did not rule out the infections, but did the test anyway to look at all the data.

He was schedualed to begin IV treatment regardless of these results, which incidentally turned around all of his neuro-symptoms.

I would only do it in your position if I was ABSOLUTELY sure negative results would in no way obstruct continued evaluation/needed treatment..then, if you do get "lucky" and fond some DNA in the small sample they take..great. And if not..no harm done. But, this is usually not the case unless you have a team of LL's who want the test for many reasons (such as my son's case). The procedure is invasive, so you need good reason to be doing it.

You can't rely on CSF findings to diagnos CNS Lyme infection. Doc C should know this, and be able to advise you as to whether this test is prudent for you at this time (to rule other stuff out, ect.,plus the fact you are on treatment, and if it is wise for you to go off for two weeks to a month in order to get a clean reading, which is still low yeild)..

You also must consider the impact of negative results on insurance coverage, and also the opinions of your current nurologist, should you need his help to get continued treatment. Negative results could prove a big obstacle, and an innacurate one, in treatment you may need.

You need to make this decision very carefully.

It is common for non-Lyme Literate neurologists, Infectious disease docs, and insurance companies to pigeon hole a patient into an LP and put all emphasis on the results..regardless of the fact that the yeild is well documented as being very low to confirm Lyme via CSF testing.

If it were me, I would discuss getting a SPECT scan done (at Columbia Presbeterian, with doctor Van. H..the LL there..must be with someone very experienced at reading the data) as this test shows patterns of hypoperfusion in the brain that are consistant with only Lyme disease, vasculitus, or drug abuse. This is an accurate assassment and a powerful diagnostic tool.

You also may think about an MRI, which could be used to rule out MS, as any lesions present (though you may not have any and still have a significant neuro-Lyne infection)..but if lesions are prestent, those for MS differ from those seen in LD.

Mo

[This message has been edited by Mo (edited 27 July 2004).]


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oliverbb
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Hey Michael,

I am sorry to hear about your plague. It is mine too. Approx 3 years ago (I am 27 yrs old) I was bitten, no ERM, but I had many symptoms of Lyme, was treated lightly b/c I didn't test positive, and since then on and off I've relapsed, convinced my ducks to give me meds (9 total). I relapsed bad this March (when there was still snow outside) no tick bite possibility, and decided to go see a recommended LLMD. My insurance does not cover ANYTHING. But, my health is more important to me than anything else.

The lab my LLMD uses is MDL for ALL testing. My bills are $1550 each time he does a round of testing, and unfortunately I have tested only NEGATIVE. So, I'll be paying $3000 for nothing. But, the LLMD has put me on 500 mgs 2 times a day of Ceftin. Doxy only takes care of Lyme in the blood. If you've had Lyme for a while, the LLMD should suggest Ceftin (which attacks in your tissues) I have improved tremendously with no symptoms at this point (4 months later). But, 1000mgs a day, seems to be the key for me. I am still on meds for 2 more months, to make sure 99% of the buggers are gone. I just posted something today about testing negative.


I may not have $3000 in my pocket, but I also wouldn't have my life back if I wasn't as aggressive.

This is YOUR life! Fight for it!
Christine


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quic
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Christine,

I just wanted to mention that my wife, son,
daughter, and I have all been infected this
past Dec./Jan. (with snow outside). Our
belief is that our live Christmas tree, which
we cut fresh from a local tree farm was
infested with nymph ticks. So, basically,
you can get lyme year round...especially if
you have a pet that wanders outdoors.

- Mike


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cmichaelo
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Mo,

Actually, my neurologist is also looking for MS, which didn't show up in the brain MRI I had done a few weeks ago.

My LLMD is relatively confident that he doesn't need a positive test to convince insurance companies to pocket out expenses for doctor recommended treatment. Though he did admit that in some cases, like IV, it helps him a lot to convince them.

I'm not sure I understand your point about the relevance of a negative Lyme test on insurance coverage. As I understand it, as long as I get one positive test, this is good enough for insurance. So say I get a positive on the blood and a negative on the CSF, then I'm home safe. No?

I'm not relying on the neurologist for continued Lyme treatment. I'm relying on Dr.C for this.

I did discuss SPECT with Dr.C. He was pessimistic about it. Said it can show so many other things. I wasn't convinced by his attitude. Many people seem to have benefitted from a SPECT.

Seems like MDL is the preferred lab for CSF analysis?

Michael


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Mo
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What I meant by that is that most insurance companies will deny IV therapy (should you ever need it) with a negative CSF test for Lyme.

They do this regardless of extensive documentation on the accuracy of the testing.

It's about the cost to them..once they are forsed to change their "medical" guidelines, they will have an astronomical burden treating all those who do need IV at some point.

I'm sure Doc c knows not to rely on the LD test itself as "proof" diagnostically.

I'm surprised Doc C is not keen on SPECT. A SPECT (dome with the Doc above, or though Middlesex Hospital and Doc K the neurologist in CT) or a PET scan os a very good diagnostic tool in CNS infection. The specific patterns and calcuations, symmetry..are all (when analized by these LL's) highly specific.

Same also with neuro-psych testing by one of the reccomended Docs (LLMD's use Dr. R in katonah, or Doctor D. in NYC, also Doctor Leo S. In NY) for this testing. Tons of very specific data that shows cognitive deficits which are REACTIVE to brain infection.

Yes, all PCR testing should be through MDL, for Lyme and co-infections. You can call them about the available CSF tests.

I'm not sure who they use for the antibody tests on CSF. I would ask the LLMD. Or, consider doing this through Doc K the LL neuro in CT. Doc C must know him.

Mo

[This message has been edited by Mo (edited 28 July 2004).]


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Lymiedad
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I am interested in more about the SPECT. I would like some information on SPECT being highly specific. The articles I read on Lyme led me to think very different; it does not have high specificity. I thought combined with other tests it can help to show a pattern with Lyme but it does not say much to help. I would likewise like information on how the SPECT helped you instead of it being another test with obvious expected results; not doing anything different for treatment. It gets very aggravating to have test after test that don't do anything to help. Thank you for your help.


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cmichaelo
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Mo,

Very interesting what you're saying about the outcome of Lyme test on the CSF and it's impact on insurance coverage. That is pathetic! Can you point to some specific cases where this has happened?

Wrt the SPECT, what does it tell you besides possibly confirming that I have Lyme?

The reason I'm asking is that at this point, I'm convinced that I have Lyme through my most recent WB Lyme test from Stonybrook (which showed reactive IgM band 41 and non-specific CDC bands, and reactive IgC non-specific IgC bands. I'll know which ones tomorrow.)

From an insurance perspective, however, I still have no proof, or "stamp of approval", that I have Lyme. So at this point that is what I'm mostly interested in.

And wrt to proof, I believe that even if SPECT shows that I have Lyme, this is not considered a proof to the insurance companies. Is it?

Wrt to Dr.K in CT, I'm not sure I grasped your point. Are you suggesting to use him, rather than MDL, to do the CSF testing?

Btw, my LLMD, Dr.C, didn't know much about CSF testing. Didn't know which labs perform this type of test. Dr.C really doesn't care much about lab tests. He's 95% into clinical evaluation/diagnosis. In fact, he didn't even bother to ask Stonybrook to report the CDC non-specific bands. I had to call him yesterday and specifically request this after I received a copy of the lab test results.

Michael


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Lishs mom
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[QUOTE]Originally posted by cmichaelo:
Hi,

I'm a newbie here. A Lyme strikken friend recommended the forum here. He believes I have Lyme. My PCP doesn't. I don't know what to believe anymore.

I've had the following symptoms for the last 7 weeks:
- brief moments of near-unconsciousness
- dizzy spells
- blurred vision
- minor headaches
- occasional memory loss
- occasional heart gallop and shortness of breath.
Sounds possibly like lyme, neurological form- often will not show up in blood test. Spinal taps are only about 20%.


Other history:
I don't ever recall a rash.

Join the other 40-60% who didnt recall a rash as well. The CDC also says that a "generalized" rash could be inicative of lyme, so it may be ANY rash, not just a "bullseye"

Tests:
I've had three Western Lyme tests done. All negative (on all counts.)


Did you know that the Western Blot should be examined by a knowlegable doctor based on the blotting platten (hence the name western blot), and that while the Blot may be negative for a CDC standard for surveillance, it may still be considered a supportive positive if symptoms exist.
The bands indicative of a supportive test are bands 23-25, 31,34,66,93 KDA. Band 41 is indicative of some sort of spirochete...not necessarily lyme.

So, request from your doctor, the "RAW DATA" from your lab work. Dont look at the "diagnosis" as this diagnosis is only for the "surveillance definition" which is a very narrow group. (this is intended to eliminate possible other infectious process in the surveillance...but certianly is not intended to diagnose all cases of lyme)

you can download a letter from the CDC director from the Oregon Lyme Disease Website. Please see recommendation 2 on the second page to see that the CDC does not recognize this test as a "diagnostic" test. www.junipermeadow.com/lyme/pdf/satcher.PDF

These tests measure your bodies antibodies to lyme disease. In some cases they oculd indicate past exposure (IgG) but since the IgM has no "memory" then if those show up, its sign of a present infection. Other senarios of positive lyme patients with negative tests are sero negativity. Many lyme patients are sero negative, because their body has either not fought the lyme at all, or is tired now...and quit fighting. OFten these seronegative people have a "sero conversion" change in blood serum to have antibodies against lyme, when they get that extra boost to fight via antibiotics. This often occurs 4-6 months into treatment.


Do you have lyme? If it were me I would not play around your PCP.
I would definately check with a lyme specialist, since it is such an emerging illness, and so few "mainstream" doctors only spent a few days in school studying this, they are likely to miss a case, and you will be the one who suffers.

Also had extensive blodwork done, B12, thyroid, anemia, parvo - I'm in excellent shape says doc.
This is what the doctor told me about my daughter (9 yrs old) . She was having seizures daily, went into congestive heart failure, and progressed to such a severe illness that in about 6 months she went from being "nothing is wrong" "its all in your head", "depression" to ....prognosis...one year of life left...we dont know what is causing this.

Please dont wait!

QUOTE]


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Lishs mom
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of course I wrote my post above...prior to reading all the others...and feel totally stupid now!..
I see you already went to a LLMD, I see you already have a new set of questions....LOL

Give your treatment some time. It takes a while for a seroconversion to take place.
Dr. B has a "PCR antibiotic push protocol" which tests for the body actually kicking out dead DNA of Borellia. Have you discussed this with your present doctor?


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cmichaelo
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Hi Lishs mom,

No problem bout the outdated reply...

You said:
> Dr. B has a "PCR antibiotic push protocol"
> which tests for the body actually kicking
> out dead DNA of Borellia. Have you
> discussed this with your present doctor?

And this would prove that the Doxy is working?

I have not discussed this with my Dr.C. I'll keep it in mind for sure.

Michael


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