Do a search on steroids. They are NOT good for people with Lyme. They will only make you worse.
There are a lot of threads on them. Start reading. You are much better off with a LLMD. Your Family MD obviously doesn't know what he is doing if he wants to give you steroids.
Just my humble opinion,
Merry Christmas!!
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
| IP: Logged |
posted
they will just give you doxy if anything, probably for a month only.
i was on three different antibiotics for 2 months then switched two of them for the past couple months.
there are co-infections too, and the LLMD can tell by symptoms which ones you have and which ones are making you sick.
its good if your primary will give you doxy while you are waiting to get in with LLMD.
then again, its possible your primary is lyme literate and just not making it public. ask about antibiotic combos and co-infections, if he doesn't know about them, get a LLMD
Posts: 615 | From maryland | Registered: Oct 2007
| IP: Logged |
posted
Michele, I'm going thru the same thing. My LLMD is expensive, but well worth it, because he knows what's going on. This is a very complicated disease.
I only see him every other month, and I can get a lot done then. Also, if I call his office about a med change, they call it in to the pharmacy, and it doesn't cost me anything.
My PCP is willing to work with him, but doesn't understand lyme disease. When she disagrees, I try to get literature to her, or get my LLMD to send her an explanation. It doesn't always work.
Example: she goes by the numbers with armour. My LLMD has explained to her that the TSH means nothing when someone has lyme disease. And, of course the levels of some forms will be high--we're putting a high level of them in the blood in the hopes that some will seep into the cells.
Every year, she takes blood at my annual exam. Then she lowers my armour. I call my LLMD's office and they send in a prescription for the amount that keeps me vertical thru the day.
I'll take my LLMD's decisions over hers any day when it comes to lyme disease.
Posts: 552 | From New Mexico, USA | Registered: May 2007
| IP: Logged |
adamm
Unregistered
posted
Yep, if he's giving you steroids, he doesn't know
enough about Lyme to treat you. Post in seeking a doctor,
and check out the Lyme Disease Association's online referral
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Michelle, I've already written on another thread of yours but since I believe strongly that one needs an expert to deal with this potentially debilitating disease I wanted to respond.
I believe that your doctor has made it much harder if not impossible for you to get rid of lyme with his inappropriate use of steroids. Hopefully I'm wrong but the point is that these kind of serious errors can cost you dearly in terms of the amount of suffering you may have to endure with this disease.
As others have said, this is a very complicated disease. Nothing to fool around with or take chances that you don't need to take.
I can tell you from personal experience how truly horrific this disease is when it goes untreated or improperly treated. You do not want your life to be ruined with long term illness.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Have to agree with other responders.
The disease is too complicated. Most family doctors just don't know enough about it to help effectively.
Some don't want to help.
My family doctor is interested in helping me by working WITH my LLMD. She told me she'll go along with any treatment my LLMD suggests, but she won't be able to treat me herself.
I think my family doctor sees my LLMD as the specialist that she is - and defers to her experience with tick-borne disease.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
He may be the nicest guy in the world with a long history with you.
However, he's already not only undertreated you, but actually harmed you with steroids.
He's harmed you by not treating you long enough.
He likely didn't give you a strong enough dose of antibiotics.
He likely did NOT bother testing you for coinfections. Those can be worse than lyme itself.
You can see where even the best of intentions has gotten you with this doc.
Yup, it is expensive. But untreated lyme and coinfections are much MORE expensive. For example, a lifetime of disability. I think I would bite the bullet and find an educated doctor.
If you had cancer you wouldn't keep going to your GP. You'd find a good oncologist. Same thing with lyme.
Stay with him at your peril.
If he will read and HEED the ILADS Guidelines, there may be hope. But he is already WAY behind the eight ball. Even the most rudimentary knowledge of infectious diseases would dictate that you don't give steroids for bacterial infections.
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
As everyone here has already posted, you need someone who has experience treating Lyme disease. Even if your g.p. was really interested in learning about Lyme disease, you still need someone who has experience. You don't need someone "practicing" on you.
Keep your relationship with your g.p. Get him to do the labs and hopefully get the meds covered through your insurance. Let him know how thankful you've been with his support so far and ask him to keep helping you but with the guidance of an LLMD.
That's what we've done and it has really helped to keep costs down.
Posts: 984 | From San Diego | Registered: Nov 2006
| IP: Logged |
Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Michele,
Everyone has given you great advice, there is nothing I can add other than my own personal experience.
I would not be where I am today without the guidance, patience and kindness that my LLMD has given me.
And my family doctor is a good guy, he is not against my LLMD, but he does not know what my LLMD does. I can remember calling my family doctor years before I ever found out I had lyme.
I had a horrible headache/head pressure and my family doc told me if I came into the office he would give me a steroid shot, he said my head pain was allergies and that the shot would do the trick.
I never did it, and I am sooo glad that I didn't. I have a life today because of my wonderful Lyme doctor, I owe everything to him.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
| IP: Logged |
posted
I echo what the others have said..especially about the steroids.
Still, there is great hope. Go to the LLMD. I went to Dr. C and it was well worth it. I am symptom free. Yes, I had to fly up there and pay the cost. However, I got my life back. I only had to go up there one time. They fielded my phone calls and answered all of my questions.
The cost of health is priceless.
By the way, I was given steriods prior to diagnosis. I'm fine now and I was worried once I learned how bad they were. While on them, my immune system nearly shut down. Very scary!
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Ditto. The steroids says it all - he hasn't a clue.
Beg, borrow, and get to an LLMD.
It will cost you ten times as much down the road if you don't fix this now.
FWIW - I too originally stuck with the specialists 'covered by my plan' for 9 months and probably wasted a good $2000 in co-pays and out of pockets that got me nowhere but sicker and harder to treat.
My LLMD fixed me up and I have my life back. Been off abx for over 3 yrs now.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
Just wanted to say that I am seeing my GP and so far so good. He's given me months of Doxy with no problem.
Is definitely interested and researching Lyme due to my case. He practices in southwestern Connecticut, as you know Lyme central!
Suggested at my last visit that I try IV Rocephin. I said I would think about it and perhaps next month go ahead if I'm still not better.
I should say, however, that while I do have neuro-lyme I am not nearly as sick as many on the forum.
At this point it's mostly annoying things like twitching, and some headache issues. The Doxy has helped me a lot but I'm not cured yet. Only diagnosed in August. Not sure how long I've had Lyme.
Anyway, if I get worse or the IV doesn't help after a month or so then perhaps I'll consider a LLMD in the spring. But for now my GP has been FABULOUS, supportive and informed.
My two pennies!
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
My primary doc, Internists took care of my first 3yrs. He tried. I was chronic before he and I knew it for months when at first the lyme was just attacking my knees and wrists off and on.
Then came the flu-like illness from hell. Within 10 days, he called it possible lyme and threw doxy, amox, ampicillian, z-pack at me in the first 2 months. Then 2 mths without abx and 40+ symptoms later, we both knew it was lyme.
I became disabled and worse in year 3 of many combos, long term oral abx and even IV (only 6 weeks), I then went for LLMD.
It's all according to how you are doing on abx? Are you truly recovering with family doc? So many factors to consider. I would recommend Dr C to anyone. But his protocol wasn't what I needed after 6 visits, two years, 8 hrs one way traveling.
I haven't fired him yet, but I've taken alternative avenues in the last 4 yrs and am making better progress without abx. But all of us have different things that help us. If I thought I needed to start traveling to him again, I will.
I'd go visit Dr C if I were you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
I agree with all the rest. If your doctor is putting you on steroids he knows NOTHING about Lyme disease. I went to an ER last year, before being diagnosed with Lyme , and they gave me steroids. I felt 100X worse than when I first got into the hospital. I couldn't believe it. The lyme critters feed off of the steroids, thus making you sicker. "They don't allow the body to keep the lyme bacterium in check. Its like having a football team with no defense."
Posts: 370 | From NJ | Registered: Dec 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Would you have your family physician treat cancer?
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I've never heard of any Dr. who actually thought taking down your immune system was a good treatment for a bacterial infection.
I'd say, not only does he not know Lyme, he doesn't deserve to hold a license to practice medicine if that's he believes that you have Lyme and chooses steroids as a course of treatment.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic