posted
I guess you all were right. This guy was a jerk to put it lightly. He started by saying that With my mood swings a Fatigue I reminded him of his ex-wife. Which whom he divorced and continued to tell me how he she will not let him see his kids... ok I thought I was there to talk about ME?
He then went on a Rampage on how to quick doctors are to diagnose Lyme Disease and that he does not understand how it turned in to a political issue.
I neatly typed all of my symtoms for him. After shortly glancing at them he proceeded to say to stay away from the LYME forums who think that everything is realted to Lyme. I told him I was simply giving him a history of issues that I have.
He said that lookign at my test he cannot confrim that I have Lyme but yet offered to put me on more Antibiotics. When questioned as to why, he ordered a more specific Lyme test PCR??
He said that my major weight loss and sweating was of great concern to him. I guess the chronic Fatigue , and Joint pain did not even phase him. He said I think it is your thyroid, possibly Fybromylysia. He said "look I am not saying you don't have Lyme... He said get the blood work and i will send them over to your RA Doctor... Needless to say I left in tears...
I don't understand how some doctors have the ability to make you feel worse than when you stepped in there. Now , I am even more confused. He then said I am not saying you are not feeling pain but you look healthy, you look TIRED but healthy.. ERRRR
He also said that the EBV means nothing and should be thrown in the garbage.
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Because all mainsteam doctors, and especially ID Docs (99.999% of them), are pricks. Bottom line. I don't how they sleep at night. I have zero respect for these types anymore. I'm so sorry for your suffering. I've been there and know exactly how you feel and it is tough.
Move on and don't waste your time with idiots like that. If someone is critiquing your personality after 10 minutes and making comments like that, it's not even worth talking back. They have no intention of helping, nor have one tidbit of compassion. They should've picked a different job where they didn't need to meet with people.
The more I hear testimonials from patients seeing ID docs, the more scared I get of these people. THere is something seriously wrong here.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Scoops,
At least you knew ahead of time that he would probably react that way.
It is such a shame since there are alot of other people depending on him who do not know any better, like you do.
It is so frustrating that he wanted to consider giving you a fibromyalgia diagnosis for which there is "no known cause"...the same diagnosis I had for 21 years, before I discovered only through my own research that I have lyme!
The best advice is just to run, not walk to a good LLMD. It will be the best thing you ever did.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
It is just amazing how absolutely hated these LLMDs are by all mainstream docs. I sometimes wonder if mainstream medicine would treat child rapists better? You can see the despise in their eyes even when discussing it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Because I tested positive for the IGM and not IGG ?? now I am second guessing everything. Where do I go from here? None of these LLMD's take insurance ( I have 2 )
Lyme AB IgM by WB IgM 41 Present IgM 39 Present Igm 23 Present Lyme Igm WB Postitive
Note MY EBV Epsteins Barr count was 3,227
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Scoops~ Your EBV is a problem. Here is some info:
Here is a link to an article about chronic EBV infection:
# Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
You can also view two videos about EBV infection on the HHV-6 website: There is a link on the home page. Go to www.hhv-6foundation.org
"View videos from the Symposium on Viruses in CFS"
Lyme may also be an issue for you, based on your WB result.
If you go back to that doctor (which you might to get your test results), hand him the article on EBV from the link above and suggest he watch the videos on the HHV-6 website.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Scoops,
Just wondering and you don't have to answer. But, with that doctor's speech about his ex-wife, my guess is that if you are a woman, and you are a woman not feeling well, that you had a proverbial bulls eye on your forehead the instant you walked in the door ( just not the kind of bulls eye that might have helped, eh?)
--
You said he offered you some more antibiotics? Did you get that prescription? I sure hope so because you have just a few days of doxy left and they prednisone you are on will still be in your body for some time.
--
I am sorry that he was a jerk. I was pretty sure that would be the case but given that you need more antibiotics NOW and it was too late to cancel, I was hoping you'd at least get a new Rx prescription to hold you over until you see a LLMD.
I had hoped that were he to turn out to be a jerk that at least all the warning you had might have given you a good support - knowing not to expect much. But, I can understand that his being the "doctor" and you the "patient" that you really hoped for some answers.
Most of us have had years of experience in this so it's easy to just say ignore his attitude. I know this is very hard.
--
As for crying, oh, dear. That is the kiss of death in a doctor's office. Oh, I've done it. Often. But I realize that they could not see it was due to pain or exhaustion or even frustration.
All they get is their little alarm saying "loser" "whiner" etc. as that is how they see "weak" patients.
I would not bother to get their test done. While a PCR might be helpful, what lab would do it? I don't think you need more testing.
-----
Get thee to a real doctor, now, a LLMD, for a full evaluation. Find one who also knows about HHV-6 and EBV, though. Not all do.
That's all at the post from yesterday . . . and Timaca's information is also VITAL.
A real doctor will see you as a valuable person who is suffering from symptoms and that doctor will work hard to figure out just what is going on and the first order of business in the plan.
posted
I know I hate to look like the poor Woman crying! But I am so frustrated and TIRED! I refuse to go back to that doctor. I did not take the prescription from him either. I guess I should have. I have an appt with the RA DR on Monday. I will get one from him and continue on my quest to find a LLMD.
I still have one question. Can I have Lyme with postive IGM and Negative IGG?
Should I be tested at the end of this DOXY cycle?
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Scoop, you have a positive IGM, good grief you have Lyme. Of course you need to see an LLMD to get a clinical evaluation and diagnosis - since we are not medical professionals.
Please understand that Lyme is a *CLINICAL* diagnosis. It is not meant to be based on any test - even according to official statements by the CDC! It's VERY important to remember that!
(sorry I am exclaiming so much; it's because I am so miffed at what that ID Duck did to you!)
You need to hear (read) the logical soothing words of a very experienced and studied LLMD explaining to you again what that test means, and why no test is used to make a Lyme diagnosis.
A test with positive Lyme bands can certainly help to confirm a Lyme diagnosis, but a negative test NEVER disproves a Lyme case. Please read or reread Dr. C's Western Blot Explanation:
It will calm your nerves and bolster your resolve!
You also have high EBV titres, which I also have (I think mine were in the 3600 range). I have had Lyme all my life, then got Mono (EBV) in highschool, then possibly got reinfected with Lyme and bartonella in college, now my EBV titres have spiked because the Lyme and Co. ran my immune response into the ground.
EBV is one of those infections that stays with you for life, but in a healthy person it never rears its head again. Once you are taken down by a chronic infection, it can take hold again.
In my case I am treating the Lyme, and eventually coinfections, and I expect to be able to handle the EBV naturally, with my own immune system, once my system regains its strength.
That is my own personal plan, as I don't like antivirals, and they don't seem to work in many cases, or last long. Other people handle this differently, and some have seen real benefits from antivirals - so it is a personal choice.
Bottom line, you need to do all the research necessary to understand why and how you have Lyme, and tell those ducks to vamoose. Take the reigns of your health back into your own hands. The next person you share them with needs to be a good LLMD with the ability to work with you as a partner.
I won't even go into MY experience with an ID doc. I am sure ther are decent ones out there somewhere, but he wasn't one of them.
The biggest thing to remember is that IGM - I try to remember that the M means it is an infection right this Minute.
IGG the G means Grandfather - that mease old diseased state.
You know, my ID doctor told me to "Stay away from lyme doctors and lyme disease" too. I am beginning to think there is a conspiracy, not just ignorance going on!!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Is it possible I don't have it because I tested positive for the IGM and not IGG ??
NOPE. That won't get you out of it.. it gets you INTO it. More confusion for ya here:
from DR C's WB explanation.......
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
scoops- If he starts blabbering about his ex & such, you basically threw your $$ out the window. Not only unprofessional... inappropriate!
He's a Zero. Don't Ever see him again. We'll throw him in the 'gator pit for ya. (What's his last Initial?)
P.S: Those IgM + bands you posted are in no uncertain terms a validation of your Lyme symptoms. You have Lyme. No ifs, ands or buts. (sorry) Welcome to the club. And work towards that app't w/ an LLMD A.S.A.P.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Thank you for the support. He also added that any LLMD will suck me dry of all of my money until I have none left.
I consider myself to be an inteeligent woman. I work full-time. I have my own bussiness etc. As I sat there I wondered how the heck this guy made it thrue MED School. He really was not very knowledgable.
I will NOT be back to him. wen they asked me to schedule a follow up , i walked out.
I am going to post to see if there are any LLMD;s in Jersey that take insurance. His Name was Dr D*l*Ca. manalapan Nj
Posts: 34 | From Hazlet New Jersey | Registered: Apr 2009
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Im sure you have a deficiency in Lyrica.
Lyrica is normally made by people who are healthy. Those people the Lyrica making gland dysfunctioning develop what most people call fibromyalgia or lyme.
Taking prescribed Lyrica should compensate for your Lyrica deficiency.
I am happy to say that I am now %100 healthy now that Im supplementing my diet with Lyrica.
Thank-god for big pharma and my wonderfull ID.
Posts: 2905 | From New England | Registered: Sep 2004
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adamm
Unregistered
posted
special place in #3ll for people like him.
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I disagree with Timaca. You can have Lyme without any bands present. Many people have a completely negative test, but still have LD. This is why you need a LLMD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You have Lyme Disease, obviously.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Can you call this drs. office today and say "Oops, I left without the rx for the abx he wanted me to take. May I run by and get it? Or can you phone it in to pharmacy for me?" (You cannot be sure the rheumy will agree to give you abx, and that is three days away.)
Second, the IGg antibodies can definately be absent in someone that has a compromised immune system. It can just be tired out, and those antibodies are just too weak to show up. Did you have any + IGgs?
Posts: 374 | From United States | Registered: Nov 2008
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posted
Oh yeah, and my ID dr. kept saying "false pos, false pos" but at the same time was slipping my husband a post it with the words "IV ceftriaxone for at least three weeks" on it, and kept saying "any dr. can do this for you, any dr. can do this for you." Huh....? Here in the twilight...here in the twiiiiiilight zone."
Posts: 374 | From United States | Registered: Nov 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
How completely unprofessional to talk about his personal life? You should of told him, you're sorry he's feeling upset about his ex-wife, but he LOOKS normal. So he can't be suffering that much.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
ID doctors suck! But so do rhuemy's. The rhuemy is where I got my stupid diagnosis of Fibromyalgia. She didn't even mention LD, much less test me for it. Instead she labeled me with FM, and told me there was no cure and that I would never get well.
Please go see a LLMD! You are just wasting your money with all these stupid "ducks".
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Scoops,
Good suggestion by Snailhead to call the ID doctor's office again and get that prescription.
You asked: "Can I have Lyme with postive IGM and Negative IGG?
That has been answered. Sorry. With your symptoms and the test it seems clear. Others have provided good back-up for that. And remember that it is better to face a harsh truth and do something about it than to settle for lies and let them fester.
If you want to get well, facing it head-on is the only way. And others who have gone before are here to guide you - until you get to a LLMD - and beyond.
---
You also asked: "Should I be tested at the end of this DOXY cycle?"
NO. No. No. You do not need to be retested. Retesting does not work in lyme like it does with other infections. You need to be on antibiotics for at least 30 weeks. 30 weeks. (see article at your other thread).
And, oh, I did not mean to say you are weak for having cried, I meant that is how most doctors see patients who cry. And . . . guess what, prednisone is basically a manufacturer of tears. Taking that is just like turning on the waterworks, the rainshowers, the mood changes and the self-doubt.
From now on just let thoughts of self-doubt drift away. It will not serve you. Education and consulting with a real expert. Priceless.
---
If you cannot get the prescription or it runs out before you see a LLMD for consult you might try taking allicin capsules &/or Olive Leaf Extract as they may offer some protection for you in the interim. And they can help with a variety of bacteria, viruses, or even fungal.
Ohhhh - about the doxy that you are on now. Are you also taking probiotics? That is vital. IF you have problems developing a system yeast infection from the abx, if probiotics are not enough, Olive Leaf extract or Allicin capsules should help.
It's vital to avoid sugar and all artificial sweeteners and processed foods. More about that in links at your other thread.
posted
Good one LisaS!
Posts: 374 | From United States | Registered: Nov 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
lymeherx, you crack me up. I had to read it a couple times to know you were joking. My stupid lyme brain was like, we produce something called Lyrica? LOL
The good news is you have two insurance policies. The bad news is figuring out a way to work the system.
You'll probably end up paying out of pocket for office visits but if you can get a good primary from your plan that doctor can then run the labs and get the antibiotics authorized that your future LLMD prescribes.
Posts: 984 | From San Diego | Registered: Nov 2006
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Scoops, I hear ya....I've made this mistake before too
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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