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» LymeNet Flash » Questions and Discussion » Medical Questions » infectious disease doc said no lyme

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Author Topic: infectious disease doc said no lyme
big lenny
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even with a posative igg and igm from igenex and llmd from up state diagnosed with lyme, went to a lyme literate infectious disease doc who is sapose to be one of the best said i did not have any of the physical presentations of lyme and all of my symptoms are from ebstein barr virus which i have.
He even said symptoms may be commong from my high blood pressure med even though i told him i was feeling terrible way before starting those meds. I was on high dose of amox for 2 months with out any real change and basically was told if it was lyme i would have felt something from that course of treatment.
The main reason i went to the infectious disease doc was to hopefully get another diagnosis of lyme and also he accepts my insurance, now i find myself doubting lyme. told me igenex was prob a false pos, but i had many bands specifically for lyme. ran his own test from mdl labs which were neg, and has officialy diagnosed me with chronic fatigue syndrome!!!
Now i find myself in extreme distress, any advice or sugestions? this is a never ending visious cycle for me!

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Lymetoo
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Sounds crazy to me! which tests did he run from MDL? Did you SEE the results yourself? Can you tell I don't trust this guy?? [rant]

I don't believe in false positives....especially from Igenex.

Hope others will chime in here. I feel for ya, lenny!

--------------------
--Lymetutu--
Opinions, not medical advice!

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mjo
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Lenny. This really stinks. I believe in Igenex. I don't believe in ID docs. Where you go from here I do not know.

Two months of amox isn't that much and I think it can be sort of mild, no major herxes. But I also know it can work for Lyme.

How much time had passed between the amox and the ID duck testing you at MDL? Abx can mask your antibody response and abx can also drive the Bb into immune complexes where they are no longer detectable by serum IgG/IgM. These ID docs know this better than anyone and still use the "negative" test as an excuse not to treat. Believe me on this one. I've seen it happen. DO get your test for yourself. There's plenty of help here to explain the bands.

I'm not a doc, and I could be wrong, I mean I don't want you to have Lyme, but seems to me you do.

What are your symptoms that are so indicative of the other disease?

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Michelle M
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Hi Big Lenny! Run away from this Duck!

First of all, MJo is right on the money.

IGeneX does NOT do false positives. You are not talking about one "maybe" band at IgeneX, right? You had a positive IgM and IgG. OK, so you definitely have Lyme disease.

So you take two months of Amoxicillin. That's a step in the right direction, but no way is it gonna cure you. (as evidenced by the fact that you still feel bad.)

However, that's just about enough antibiotics to make a subsequent test at ANOTHER lab (your ID Duck's lab) appear to be negative for Lyme.

DON'T BUY IT!!!

It's easy to be talked out of your diagnosis by Doubting Ducks. We are trained to believe our doctors, after all.

But keep in mind: In the world of western blot testing, nothing else on the face of the earth can give you those little "stars" on your IgeneX tests except borrelia burgdorferi.

Ain't no such thing as "false positives" --- 'specially when combined with a symptomatic patient like you.

Epstein Barr is frequently a misdiagnosis of Lyme disease...that's not to say you don't have it, only to say I would have a good LLMD confirming that for me if I were you. And definitely not THIS guy -- someone who doubts a positive test from the best tickborne disease lab in the country.

DO NOT LET this duck dissuade you from treatment. Chronic lyme would be difficult to fix in two months, but 2 months of Amoxy could easily put enough bacteria into submission to fool a subsequent test. That hardly constitutes proof of anything.

This doctor is NOT Lyme-literate, trust me.

I don't mean to come off strong, but we want you better! This doctor will take you OFF antibiotics and guarantee that you get worse, not better.

[group hug]

Michelle

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Lisianthus
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Get a REAL LLMD Quick!!!!!

--------------------
yahoo 360 http://360.yahoo.com/my_profile-UqSNGiA9crUMRW.lFNGN5Jk-?cq=1

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KLSS
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Hi Lenny,
Your story sounds so familiar...I also went to a very prestigious ID doc who told me that I didn't show any physical symptoms and that I would improve on abx rather than feel worse so it couldn't be lyme. He wouldn't even look at my Igenex results and bashed my LLMD. I went away frustrated and confused and stopped all treatment in hopes that everything would feel better eventually.

My symptoms have progressed and I'm determined to prove that my symptoms are lyme related because I know that's what it is in my heart. Please take the time to get a second opinion and don't wait based on what this "doctor" says.

Best of luck to you...

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Lymetoo
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Come to think of it, I never felt one bit better [or worse] on amoxicillin either. Gave it up early in the game.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Boomerang
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I'm a relative newbie.....and still learning. But, I do want to encourage you not to give up!

You don't have to take this doctor's advice as the final word. If you aren't satisified, please try another doctor.

Don't give up!

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beachcomber
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Lenny:

I agree, get to another MD for another opinion. However, you are getting some mixed info here. Igenix tests can, in fact, come back false positive. I know a few folks with Lyme who got negative tests or false positives from Igenix. Igenix is NOT infalable. All depends on when you test and how the samples are handled.

Also, it is more common than not to have elevated antibody levels after a few weeks of your first treatment with abx. My MD retested me after 5 weeks of abx and my antibody levels were much higher than the first time pre-treatment. A good LLMD knows to run the test a couple of times in the beginning.

As for EBV being your problem, it is entirely posssible, except that I would question it because of your positive banding.

As for ID "ducks", they are not all quacking. A good LLMD, who is also and IDMD, is like hitting an insurance lottery. You would be fortunate to have an IDMD who is also Lyme Literate. And, guess what, they DO exist, despite what is said on this forum. I see one such MD. The insurance issue is a big one for me.

I would suggest you go back to this MD and have a really long talk with him/her about how you feel physically. Have him/her retest you through Igenix, if he will. He works for YOU. You have the right to ask him to treat you (ask him to humor you). If it doesn't work, go find another MD.

Personally, I would be very happy with a diagnosis of EBV. A diagnosis of LD from an IDMD was the worst news I got that day. But, it was the right diagnosis and I am being treated and I am being covered by insurance.

I wish you the best.

Bc

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treepatrol
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Lenny you know you have it tell the ID doc to get bent [Eek!]

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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Monica
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ME SAY; NO INFECTIOUS DISEASE DUCKS!
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Foggy
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I had to use an ID quacker for IV and when he started yapping about CDC guidelines, I knew it was time to have my LLMD give him a call. This is an idea, although, they both got into a shouting match over their agreement to disagree.

I asked the ID duck how many chronic Lymies he'd put into remission with CDC IV abx guidlines and he said "it's all so subjective." Yeah right! [shake]

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HEATHERKISS
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Sorry about Dr. I! I can't believe it! I've heard he is hit and miss. And he has said things that scare me.

I did get his name from a very reputible source on Long Island. It's just that he takes insurance....

There is another insurance LLMD in Staten Island. If you want to try again w/ the insurance.

I know it is sooo hard to make that first step and pay $$$$ cash!!!!! I had to! Other wise I wasn't getting the mepron I needed rxed.

My husband and I are going to get blood results from Dr. I. on monday. Then we are moving on. I can't go to this Doctor anymore knowing that he is not treating you.

Supposedly he has helped many and is considered and LLMD.

Sucks,

--------------------
HEATHER

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Areneli
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There is a special section in hell for IDs who deny Lyme diagnosis.
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riversinger
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From Dr. J in CT;

quote:
The CDC wrongfully includes five non-specific cross-reacting antibodies
in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can
be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered.

One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific
antibodies without having any Borrelia burgdorferi genus species specific antibodies.

Without knowing the bands on your western blot, its hard to say who is right here. While I think generally Igenex does not tend to have false positives, it is always possible. And, as pointed out by Dr. J, and lab can show a false positive due to the CDCs criteria. Which is why it is so important to know what bands are being discussed.

Of course, the test is not the ultimate proof. MDL labs uses only one primer to do its western blot, as opposed to the two used at Igenex. That is why Igenex is more likley to show positives, you have twice as many things to react to. But even Igenex does not always show positives, and unless the doctor did a test at both labs at the same time, there is no way to know what was happening when you had the test at MDL.

It seems worth pursuing further. Two months of amoxycyline is far from definitive treatment. What did the ID doctor offer you as treatment, or diagnosis? I assume you were there with more symptoms than a positive test. What does he suggest instead?

Antibiotics are being used for the treatment of so many illnesses, it may be worth a go no matter WHAT they think you have. That is what finally convinced me to pursue Lyme in the first place, the fact that it could cover so many possibilities, even if what I had was NOT Lyme disease.

--------------------
Sonoma County Lyme Support
[email protected]

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Melanie Reber
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Hi Big Lenny,

I'm so sorry that you have to deal with this frustration. Please let us know if you need some help finding another doc for you, OK?

I would like to thank Beachcomber for her neutral view on ID doctors. There are several IDs that are actually LL...so to lump all IDs in the bad doc category is a bit of a na�ve assumption.

My best,
Melanie

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big lenny
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I want to thank everyone for there excellent responses!!! Im going to list my results from igenex::
Igg
18kda -
22kda -
23-25kda -
28kda -
30kda +/-
31kda ++
34kda +/-
37kda -
39kda +/-
41kda ++
45kda +/-
58kda +/-
66kda +
73kda -
83kda -
93kda -

Igm results:
18kda +
22kda -
23-25kda +
28kda ++
30kda +/-
31kda -
34kda +/-
37kda -
39kda +/-
41kda ++
45kda +
58kda +/-
66kda +
73kda -
83kda -
93kda +

These results are from 10 months ago, my symptoms are still quite persistant, extreme fatigue, headaches, nausea, dizzeness, slured speach, ocd compulsions, twitching, recentley feeling mood swings, restelessnes,bloating, weight gain, muscle pain , breathing problems, blurry vision, jaw stifness, teeth pain, burning sensations, weekness, depression, sometimes i get uncontrolable thoughts funning through my head, anxiety, many many other things both mentalaly and physically dibelitating. never recaled a rash with bulseye, but have had many different rashes many years ago.
Oh yea i also have high blood pressure, heart palpatations, chest pains, stomach problems etc.

thank you all again for your thoughts and for taking the time to read my post and for responding with excellent advice and compassion!!!!

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riversinger
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Well, you have some pretty convincing bands!

Once again from Dr. J.
quote:
There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.

Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia
burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

The emphasis in the quote above is mine. You have enough Lyme specific bands positive to consider your tests, both IgG and IgM, positive according to Dr. J's criteria. But that is only considered confirmation of the clinical decision.

It certainly sounds as though you have enough symptoms that another opinion from a recommended LLMD would be in order. Unfortunately, you may not find someone who will take your insurance. That may be the trouble with the ID doc.

He may treat some Lyme patients, but only when he has sufficient labwork that the insurance company accepts. That is why so many LLMDs don't accept insurance, because the insurance tends to dictate treatment.

--------------------
Sonoma County Lyme Support
[email protected]

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Lymetoo
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quote:
Originally posted by Areneli:
There is a special section in hell for IDs who deny Lyme diagnosis.

Absolutely. [rant]

--------------------
--Lymetutu--
Opinions, not medical advice!

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jsnyde2
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I went to an infectious disease specialist here in La Crosse because I was told by a friend that the head of the dept. had done research on and was even published on lyme. An I.D. under the big gun saw me -gave me Elisa -I tested POSITIVE and he still didn't see any evidence that I am infected. He didn't think twitching, cognitive problems, shooting pain were lyme symptoms. I didn't get it until I started reading this forum and my husband and friends still don't get it. Still waiting on my 1st appt with LLMD.
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groovy2
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Hi lenny
After reasurching how the WB test is
preformed- a false positive
is Much Less likely than a
false negitive--

Its perty sure if your tests
are positive you are too--Jay-

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beachcomber
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Thanks Melanie. Yes, it is very naive and somewhat ignorant to call all IDMDs ducks. If they all were then why wouldn't insurance companies discount their diagnosis. I would really like to understand why the good LLMDs so arrogantly refuse to deal with insurance. It does a great disservice to the Lyme community and to our cause in general.

I hope Lenny gets the help he needs and can have it covered by insurance.

Bc

Might be time for me to move on from this board.

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treepatrol
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Igg

66kda + 66 which are dominant immunogens of all types of borrelias

41kda ++ 41 which are dominant immunogens of all types of borrelias
31kda ++ Band specific for Borrelia burgdorferi OspA
34kda +/- Band specific for Borrelia burgdorferi OspB
39kda +/- Band specific for Borrelia burgdorferi

45kda +/- {appeared in IgM in control group in 1998 study done in Poland}MEDLINE - 9972057 - "...whereas in control group only antibodies
against 45 kDa and 58 kDa were present."
http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9972057&form=6&db=m&Dopt=b
{appears for HGE}
MEDLINE - 9620365 - "...confirmed the importance of the 42- to
45-kDa antigens as early, persistent, and specific markers of HGE infection."
Human granulocytic ehrlichiosis
http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=9620365&form=6&db=m&Dopt=b

58kda +/- Heat shock protein
30kda +/- Possibly a variant of outer surface protein A, OspA substrate binding protein

Igm

18kda + flagellin fragment outer surface protein
23-25kda + OspC {specific for Bb} Outer surface protein
28kda ++ OspD, Oms28 {specific for Bb}
41kda ++ Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
45kda + Heat shock protein. 45-kDa antigens as early, persistent, and specific markers of HGE Human granulocytic ehrlichiosis.
66kda + Heat shock protein. This is the second most common borrelia antibody. Oms66 Hsp outer/integral membrane protein.
[b]93kda + an immunodominant protoplasmic cylinder antigen, associated with the flagellum {specific for Bb}The DNA or genetic material of Borrelia burgdorferi.[b/]
30kda +/- OspA substrate binding protein.
34kda +/- OspB Outer surface protein B OspB {specific for Bb}
39kda +/- BmpA {specific for Bb}
58kda +/- Heat shock protein.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low


Lenny you have lyme and Human granulocytic ehrlichiosis.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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HEATHERKISS
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up

--------------------
HEATHER

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david1097
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Maybe it isn't Lyme after all (at least he does not think it is) so let him go his own way..... BUT DO NOT LET HIM GIVE YOU A DIAGNOSIS OF CHRONIC FATIGUE SYNDROME AND DO NOT ALLOW HIM TO WRITE IT IN A REPORT.

CFS and Fibromyalgia are dead end BS diagnosis that are intended to get rid of you because they can't figure out what is wrong with you. Such a situation is unacceptable by any standards. Once labled with this you are never going to get anyone to agree on what ever you have.

If I was in this situation I would make it clear to his office that if a report is issued with either of those diagnosis then he had better be willing to unequivocally defend that diagnosis via a lawyer. No diagnosis is far better than those, since those are not a diagnosis at all.

Rather than give such a garbage diagnosis he should do the stand up thing and say he does not know what the problem is. He can say he does not think it is lyme but unless he has a definative and provable diagnosis then he should not report it PERIOD. Basically, he has a responsibility to require the same rigour of proof of CFS or FMG than he applies to Lyme.

As You may detect, I have strong opinions on this subject, opinions which I have formed after many many discussions with patients and doctors. The patients seem to accept this as a diagnosis but pretty well all the Dr's recognize CFS and fibromyalgia as BS diagnosis to get the problem patient out of the medical system rather than spend more effort to figure out what really is wrong.

Also, just re-read your post. If nothinh happened with 2 month of amoxi then the probability that Lyme infection as the PRIMARY pathogen goes down. Lyme (in the strict sense) as a co-infection to other typically mild infections is now being widely recognized as as possible cause of lyme like symptoms. the ALDF and Dr. B guidelines BOTH recognize this effect, with the result that Lyme disease should really be called Lyme Syndrome in these cases.

What co-infections have you been examined for (I did not say tested for since the testing is really bad for co-infections). There are a number of infections, bacteria, parasite and virus that can case the Lyme like symptoms. There is considerabe overlap.

Good luck.

Another factoid....

Does your dog get heart worm pills? Well guess what, heart worm is also a documented human disease....

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HEATHERKISS
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Just got back from seeing this LLMD ID today.

My husband tested positive for babs and equiv for lyme by MDL labs.

My new tests show everything negative.

He told my husband that he could have the Babs without having Lyme. He rx'ed mepron and zith 3 weeks on 1 week off / for 2 months. Wants to see my husband in 8 weeks.

He wants me to get off of Biaxin by taking 1 pill a day for 10 days then stop.

We are not going back. Especially in light of big lenny.

--------------------
HEATHER

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lymster
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Big L:

Here are my two cents about ID DUCKS:
ID doctors, on my book, are the worse; as a matter of fact the ID stands for "idiot doctor" or "inevitable dumb", "imbecil duck", and the list of names that I came up with goes on and on.
Seriously, I strongly believe that this kind of ducks receive special training,not just special but profesional training on how to become top of the line arrogant a....s ho......es.

Please, don't waste any more time with this so called doctor that actually is a disgrace to the medical profesion. Go get help!!!!!!

Lymster in WA.

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nan
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Looking at your bands, Lenny, on your WB and knowing your symptoms....I would say you definitely have lyme disease. (I'm not a doctor, but it doesn't take a rocket scientist to figure that out!!!!) Wonder if you have been tested for coinfections?

Like I have advised you before, my friend....if you want to get better you have to see a REAL llmd. I feel for you....it's not easy to shell out that kind of money, but it is vital if you ever want to feel well.

PLEASE get to a real llmd...you deserve a break about now!

nan:)

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nan

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beachcomber
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Lymster:

You have some real issues with IDMDs, don't you? So sorry your experience was not good. I can tell you that there are LLMDs who are also arrogant. Why won't they take insurance and help a guy like Lenny out? It sucks.

I wouldn't be so fast to judge my friend. I have seen my share of MDs, even ducks, but I would not generalize the way you do. That is just not helpful to anyone.

Hope Lenny can get some help soon.

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Michelle M
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quote:
Originally posted by beachcomber:
Lymster:

You have some real issues with IDMDs, don't you? So sorry your experience was not good. I can tell you that there are LLMDs who are also arrogant. Why won't they take insurance and help a guy like Lenny out? It sucks.

Beachcomber, you obviously have found a prize ID doc to help you, one who understands and really treats Lyme. That is a rarity!

However, it is hard not to 'take an attitude' toward them as a whole when you consider the recent letter authored by them about Lyme..wish I had the link handy. They're -- as a group -- one of the reasons that treatment and understanding of Lyme are lagging so badly.

Now, as to LLMD's, mine, in Chico, happens to take insurance. Blue Cross, in fact. A visit involves a $25 co-pay, plus about a $75-$100 check to the pharmacist who coordinates my treatment and is on the ILADS Board. I'm usually there an hour to two hours.

I, too, feel for those who must cast around trying to figure out how to afford treatment. It's a shame that a 'normal' doctor can't undertake treatment. I hope someday understanding of Lyme will have advanced to the point where that will be possible!

Michelle

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hopeful123
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big lenny,

so sorry you are having a rough time with this doctor. As has been stated on this thread, get a real LLMD asap and you will see the difference!!

Good luck!!!

hopeful123

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some days you're the bug, some days you're the windshield  -

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5dana8
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I was mis-diagnosised with CFS by a LD he said He thought I had lyme but couldn,t treat me because my western blot was neg.That was 1n 1986.
In the very beginning I had been taking Tretracycline(Prescribed from another duck) and started feeling better.My ID told me to stop taking because it was confusing the picture.

I think today a good LLD would go by a symptomatic diagnosis.
The test even says at the bottom:do not go by testing alone.
You have alot of very classic lyme symptoms.
I don't want a single person to forfit their lives to this beast of a disease because A LD tacs on a CFS label
Run don't walk to your nearest LLD>
Take care dana

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5dana8

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big lenny
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thank you all for the support and excellant responses, i am going to see this id once more in 2 weeks just tto see his next step, then i will head back to my llmd up in armonk how treated and diagnosed, so i will keep my fingers crosed and see how it pans out, also the llmd i saw wanted to also to a spec scan to see the stage i m in , any thouts on if this test is worth it or not?
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HEATHERKISS
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I think that is the best way to find legions on the brain???? Is this Dr. in Amock a Nuero?

Try posting as a new topic. I believe alot of people have had it done.

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HEATHER

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beachcomber
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Lenny:

You are doing the right thing. If your LLMD cannot get you aggressive treatment covered by insutance then he/she would have to work with an IDMD or Nuerologist (who accepts insutance) to get more than 30 days covered. It is good to have the 2 on the same page. Not sure your exact circumstances or why you went to another MD but, appears you need to get proper treatment and need insurance coverage.

And, yes, you should be treated based on symptoms. My IDMD/LLMD treats that way. My PCP had to refer me to an IDMD so that I could get IV coverage. They worked together on that in the beginning. Fortunately, my tests were also positive - a no brainer.

You have some good advice here. I would just be leary of those who make claims that ALL IDMDs are ducks. It is simply not true. That said, use your gut feelings, demand that the MD work with you on your terms or hit the road and get one that will. Remember, you pay these MDs, you can call the shots.

I wish you the best.

Bc

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treepatrol
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Everybody says aggressive treatment = IV I think you can be just as aggressive with orals I was at one time 6000 mgs of 3 types of abxs. If you can stomach that do orals if you cant stomach orals then do Ivs, Lenny the spect scan may or may not show lesions or damage if it shows damage in my opinion orals can work to stop it but it has to be high doses if you cant do high doses than by all means do Iv's.

Some people cant do orals they start to throw up and then get dehydrated then Ivs are used.Good Luck either way but if your not getting treatment yet Get it now.

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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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Svengali Eyes
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Hi Lenny,

I'm glad you are seeing this doctor again in 2 weeks because he is not the kind of person who will leave you hanging. He will find the cause of your complaints, or help you find someone who can. He is a fine doctor.

Give him a chance. Any doctor you go to can be hit or miss. It depends on a lot of different factors. Patient compliance, good communication between doctor and patient, being totally truthful, not treating with supplements and other meds that we forget to tell the doctor about. These things all affect our outcomes.

If you go and are not happy you can still go to the other doctor in Armonk. The LI doctor we are discussing here happens to think the doctor in Armonk is also a good doctor.

This doctor is not a duck. [Frown] I have a tremendous amount of respect for this man.

I hope you find the doctor that is right for you.

Sven

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5dana8
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p.s. I am not sour on all LD'S .My LLD is also a IF,D and He is Fantatic!
Dr. J in N.C. Love him
I am against the arrogance and ignorance of some ID'S who refuse to treat because of the results of western blot.
Take Care and hope you find good treatment
dana.

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5dana8

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