posted
once again my doc is tryn to put me on steriods for my joints, i told him this is not good for lyme. he asked me to bring him info on this, does anyone have that info so i can bring it to him 2moro?
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Edited to add: after writing the note below, it does occur to me that this may just be the only doctor you can find who may be willing to treat you. Better is good but, often, we do just have to go with what we've got. If this doctor is really willing to learn, would he connect to ILADS for physician training?
See the sections on Physician Training. They have a conference coming up in few months, I think.
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First, good call for you to know that about steroids. The nearly ruined my life (well, they actually did. It took years to get over steroid damage and I'm not sure I ever repaired the damage caused).
Can you get a real LLMD who knows why? If we have to teach our doctor about this, what else does your doctor not know that he should? Probably lots.
You should not have to pay a doctor whom you have to educate in order to properly treat you. You deserve better. The post below should serve for this purpose. However, I hope you aren't having to pay for an appointment for him to read this.
Also, if a doctor really doesn't understand enough about this, unless they just happen to be a superb person and scholar, it can take a very long time to get up to speed enough to have the knowledge to cover all the bases with any lyme patient.
Has he suggested Turmeric/Curcumin? Fish oil? Those are excellent things to help reduce inflammation.
It's best to avoid acetaminophen as that, even in normal dose, can cause liver damage. Both aspirin and acetaminophen can also be toxic to the ears and balance system.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. . . .
From page 12:
. . . More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants. . . .
Page 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
. . . Dr. Burrascano makes it clear in his treatment guidelines that steroid treatment is detrimental, these are excerpts from his guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection.
Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants.
The severity of the clinical illness is directly proportional to the spirochete load, the duration of infection, and the presence of co-infections. These factors also are proportional to the intensity and duration of treatment needed for recovery.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressants medications, and severe intercurrent illnesses.
This is why steroids and other immunosuppressants medications are absolutely contraindicated in Lyme. This also includes intra-articular steroids."
An easy explanation. Your immune system are the "soldiers" of your body constantly standing by to attack any foreign invader.
When an immunosuppressant is used, it is like killing off or knocking out most of your "soldiers", now your body is open to all foreign invasion and while your immune system is knocked out, those invaders can go anywhere, your heart, liver, brain - everywhere.
- full article at link above.
=========================
[poster's note below]
Low Dose Cortef to help adrenal repair:
However, temporary use of very LOW (sub-clinical) dose hydrocortisone (Cortef) has been used as the last resort for lyme patients close to adrenal failure.
The adrenals (and the entire endocrine system) really takes a hit with lyme. Adrenal failure can become fatal so, if nothing else is working, Cortef can be a life-saver - or prevent a patient from reaching a critical stage.
Under the care of a LLMD, this can give the adrenals enough of a rest in order to start healing. However, usually adrenal support measures known as adaptogens are first tried. For most, adaptogen support is enough (along with good self-care).
Those include Eleutherococcus senticosus, Ashwagandha, Cordyceps or Rhodiola (starting slowing with a low dose as that can be too stimulating for some patients -- and too much stimulation is damaging to adrenals). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To go with that last part about adrenals:
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:
WHAT IT DOES: Turmeric root is bitter in taste and warming in action. It strongly reduces inflammation and mucus in all parts of the body, protects the liver, lungs and intestines . . . .
SAFETY ISSUES: Due to mucin-reducing effects, do not use the concentrated extract (curcumin) or oil in high doses, especially if you have bile duct obstruction, gall stones, or stomach ulcers. Use turmeric as a spice freely.
- full article at link above. From ``The One Earth Herbal Sourcebook'' (Tilltoson, et.al.)
A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .
In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .
The results of the study showed that curcumin reversed memory deficits in a dose dependent manner, meaning increasing dosages of curcumin provided increasingly improved memory in the mice.
In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response.
The researchers also found that the effectiveness of curcumin was similar to the effects of a tri-cyclic antidepressant.
. . . inhibited changes due to corticosterone-induced toxicity including preserving nerve cell connections, and inhibiting the corticosterone-induced activation of the enzyme calcium/calmodulin kinase II and stimulated glutamate receptor expression, which play a role in neurotransmitter secretion and certain kinds of memory and learning.
The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and
its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.''
===========================
Other threads addressing issues that frequently affect lyme patients: ----------------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
thanku so much, i will take this to him 2moro. he is tryn to help, just doesnt no what to do for me. he feels like he has done everything he can. he does want me to go to a hospital in maryland, it is called john hopkins i think. have u ever heard of it?
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ooooh. No. No. No. No. Johns Hopkins is absolutely terrible regarding lyme. So many patients with lyme have suffered medical abuse there. They are also in the dark about other tick-borne infections.
It's really sad because they are stellar in many other matters. But lyme patients have been treated horribly there. They are huge IDSA followers, in fact, they sort of help "write the book" on bad lyme treatment.
Mayo Clinic & the Cleveland Clinic are other examples of a medical institution that can do some great things also absolutely not only dropping the ball with lyme but doing so much damage due to their ignorance of lyme and other tick-borne infections.
Maybe your doctor would like to join ILADS. He could get at least a partial scholarship to attend the conference. ----------
California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.
==================
You may not yet be aware of the differences in the IDSA and ILADS. That is explained in this article.
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies
Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
OK, Keebler has given you all the alternative things you can do to help lyme arthitis (I do fish oil, msm at 8 g a day, tumeric/boswellian).
But that still wasn't helping enough. I began taking 200 mg of Celebrex twice a day along with herbs, and that has helped some. I also do a lot of abx.
I second what Keebler said, no, no, no to John Hopkins, Mayo clinic, in fact any major medical center. Although they are wonderful for other diseases, they are terrible for lyme patients because they do not believe in the chronic form of the disease, and do not believe in long term abx, which for many of us is the best option for relief.
Also, FYI, they gave me a shot of steriods (before I knew I had lyme), and that sent my lyme into overdrive. Not only did it not help my arthritis, it gave me facial nuerological problems, which has taken almost 2 years of bicillin shots to dampen down.
Try the celebrex.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Find a new doctor ASAP!!! ( and PASS on the Johns Hopkins if you want to get well!! )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Just say NO to steroids!
I had three injections of steroids in my back for leg pain last year. In December I was close to death. Lost 75 pounds in six months, nauseated daily, dry heaves, could only eat a saltine cracker or two a day for weeks. I was so weak I could hardly get out of bed to go to the bathroom. I have never, ever been so sick in my life and no doctor had a clue that it was from the steroids that shut down my immune system.
If you want to go on a "fun" roller coaster ride like I did for six months, take steroids. Otherwise, listen to what Keebler and others say--avoid them and get a new doctor!
posted
i have seen other docs and he told me i should of picked different parents. i live in a small town and i do have medicaid but i loose it at the end of this month. i have lost about 30 pounds since i have been sick and i am down to 110. i am going for ssi, but i am guessing they will tell me no. my doc said there is no way u still have lyme, even if i no i do. i have had it for 4 years now. i am soooo stressed out about this and just want some help
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Its a sad affair.......but the ONLY help is a LLMD. All other doctors will do more harm than good.
Believe me those of us that have been on here for a while see your story every single day. It never ever ever works out to try and use a regular doctor. Its just like if you had cancer......you would see a cancer specialist!
If you have Lyme, you have to see a lyme specialist.....LLMD!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
this website has helped me alot, so thanku to everyone on here. do LLMD's help u when it comes to cost? we live paycheck to paycheck
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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posted
this website has helped me alot, so thanku to everyone on here. do LLMD's help u when it comes to cost? we live paycheck to paycheck
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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posted
this website has helped me alot, so thanku to everyone on here. do LLMD's help u when it comes to cost? we live paycheck to paycheck
Posts: 34 | From goldsboro, nc | Registered: Jan 2010
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posted
Many LLMD's don't even take insurance... but I would get a list of them from Seeking a Doctor here and call around. Maybe you can find someone who will help you.
You MUST TRY!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I live in severe pain for at least 3 years. On many narcotics, but found a great medicine called meloxicam I take on really bad days. Its been the best drug I have tried. It is like a really strong Ibuprophen. Maybe ask about it, my pain is a lot better and I FINALLY feel like I am getting relief.
Posts: 3905 | From USA | Registered: May 2007
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