posted
My mother was referred to rheumatologist by GP, before seeing him we decided to see Lyme's specialist who diagnosed her with Lyme. THEN we saw rheuma. who on office visit said he agreed that it was sometype of immune disorder. THEN 1 week later called and said she had rheumatoid arthritis and wanted to put her on prednosone, we said no - he called back the next day and said he thought she had Lupus. Soooo - we decided to go with Lyme diagnosis.
In the meantime we changed General practitioners, who listened to our story, said he wanted to talk to the rheumatologist -
THEN rheumatologist called back and wanted to "reevaluate" her - we just kind of put him off and today the general pract. has called and said he doesn't think she has Lyme.
In the meantime we are trying to get appt. with the ONE other lyme specialist in the state - which will take 1 month.
What do you do? I think we just continue with the Lyme treatment. Right now we are on 2 week break because of Herx.
Please give me some feedback?????
Posts: 11 | From charlotte, North Carolina | Registered: Oct 2007
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posted
Check out www.roadback.org, it's a website dedicated to the treatment of autoimmune conditions (RA, lupus, scleroderma, etc.) with antibiotics. Many great success stories over there. You don't want to start down the slippery path of prednisone and chemo drugs, it's much harder to find your way back.
If you can't find an LLMD in your area, there may be an AP (antibiotic protocol) doctor near you. Good luck!
Posts: 984 | From San Diego | Registered: Nov 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was diagnosed by a local Rheumie who then told me I had Post Lyme Syndrome. Then another local rheumie told me the KNEW I had active Lyme but wouldn't treat me because of politics... Rheumies are caught up in Lyme politics like everyone else-
Yup, Roadback.org is a great site. There are many Rheumies who treat with antibiotics now- see if you can find one- or an LLMD(_!(!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
p.s. They thought I had lupus 8 years pre-Lyme and it went away with pneumonia antibiotics- then when I got lyme all my lupus symptoms came back PLUS more!!! AND ALL WENT AWAY WITH ABX!!!
get her to a Lyme doc if you can()!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I don't have a medical background, but it sounds to me as if the Lyme diagnosis is probably correct - she has LD symptoms, is treated with antibiotics and has a herx.
Besides, the drs sound as if they're fishing for a diagnosis.
The herx must have been pretty bad if she was told to take a 2 week break in treatment.
What antibiotic(abx) & dose has she been taking? How long has she been on abx? Has she taken probiotics to replace the good bacteria in her system?
If you don't have a copy, print "Diag Hints & Treatment Guidelines..." www.ilads.org/burrascano_0905.html It is 33 pages of excellent info!!!
Be sure to read pages 22-25 about Co-Infections. Chances are great that she may have more than Lyme disease.
Tick-Borne Diseases (TBDs) are very complex. Ask as many questions as you need to. It's not often anyone stumps the "panel."
Posts: 4638 | From South Carolina | Registered: Mar 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
JanBoPuck,
My heart definitely goes out to you and your mother. I think most of us have been caught up in the tug of war of emotions as to which doctor to believe.
In my case, I was seeing the neurologist and rheumotologist long before I even knew there was such thing as a lyme specialist. I was sent back and forth between the M.S. or Lupus diagnosis and had tested positive for R.A. as well, although the Rheumy didn't think I really had that.
But as CaliforniaLyme is saying, many with lupus, R.A. and various other illnesses have still tried the antibiotic route to find that it is making a difference in their lives.
So although this is a decision your mother will have to make, if it were my mother, I would definitely be trying to get her to go with the lyme treatment path since it seems to kill more birds with one stone.
Do keep us posted on how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Sometimes, it comes down to your gut feeling. Does the diagnosis fit in your mind?
About 6 months into my Lyme treatment, I started to doubt. I made an appointment with a rheumie at Johns Hopkins. He wasn't able to help me, of course didn't think I had Lyme but had no other ideas either.
But he said something important to me about the other diagnosis I had decided not to accept, which was fibromyalgia. He said he didn't think I had fibro because in his experience, when people with fibro are diagnosed they have this feeling of relief because the diagnosis feels right.
He said if diagnosis didn't seem right to me, then I probably don't have fibromyalgia.
Another important issue is the response to antibiotics. A herx response is suggestive of a bacterial infection.
Then there is basic trust of the doctor. There are many doctors, in my experience, who want to give an answer even if they don't know the answer. There are also many that won't move from a diagnosis no matter what. If you sense this is happening, I suggest running away.
On the other side, I think it's a bit odd that the diagnosis is changing regularly. That to me is also a sign that this doctor is scared to admit he doesn't know.
I have the greatest respect for doctors who will say to me they don't know. Either they admit they can't help me because they just don't know, or they tell me they suspect something but can't be certain. It's all about the honesty.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Janbo,
You're so sweet for looking out for your mom. Bless you!!
Did your lyme specialist order up any tests when he (or she) saw your mom initially? Normally, they do. Have the results of these tests come in yet?
If this was an "LLMD" (lyme literate medical doctor as we call them), I can tell you that they are rarely wrong. Of course, they're human, but they are very experienced when making their clinical judgments as to whether someone has lyme. If they diagnose you with lyme, chances are MIGHTY good that you have lyme.
WHEREAS, a non-LLMD, like a rheumatologist or a neuro, tends to be violently opposed to the very idea of lyme!! It is very bizarre!!
As you've heard above, your mom having to discontinue her meds is a total giveaway. This is the infamous "Herxheimer" reaction -- killing a large load of bacteria, especially in the beginning of treatment -- will do that to ya. Chances are good that her rheumatologist has never even heard of such a thing.
It's also possible your mom has co-infections like babesia, bartonella, etc. -- another sure fire bet your other doctors have never heard of such a thing or if so, consider it "rare" - when in fact it's quite common.
Give them the cold shoulder. Put them off. Claim she's "ill" right now. (Hey, that's not even a lie.) Keep her lyme doc updated on how she's doing. Find out if any tests have come back. Trust your gut and trust your LLMD, and take a pass on the others. Let us know how she does, 'kay??
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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quote:Originally posted by janbopuck: Soooo - we decided to go with Lyme diagnosis. --------------------------- I think we just continue with the Lyme treatment. Right now we are on 2 week break because of Herx. [/QB]
SMART move! Have you posted your Igenex WB results on Lymenet??
What's this about a 2 wk break??? Most drs recommend stopping meds for a day or two if you herx really hard, others recommend plowing on through the herx.
I've never heard of anyone taking 2 wks off for a herx [on a routine basis].
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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