TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I broke my finger and dislocated it. In order to get some functionality back I will have a stainless steel pin inserted through the bone that will protrude from both sides of the finger and then a traction device a few days later and physical rehab for 6-8 weeks. Some of the success of the rehab will depend on getting the swelling down in the finger. I tend to swell a lot anyway so this concerns me.
I expect they may want me to take steroids to get/keep the swelling down. I'm personally opposed to steroids for obvious reasons but I also don't want to sacrafice functionality of my right ring finger. I need it for writing, cooking and such. As it is the doctor states that I will never get full functionality back.
Anyone know of any good antiinflammatory medications that the doctor will find acceptable and that will work?
Not looking forward to the pain that they say the surgery and therapy will cause but I am grateful that I can have a surgery such as this because without it my finger would stick out straight and would not bend at all.
I have a call in to my LLMD but would also appreciate any advice/experience that any of you have.
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terry,
I don't recall if you said this would be a St. V's but, if so, they have some NDs on staff. They may be in the cancer department, but it could be that they may also be open to other patients. The NDs there are also acupuncturists.
You'll have to drink good amounts of water to keep stuff flushing on through and with the knee and finger that may not be easy (to then get rid of) but it's still so important to get good hydration.
When we spoke the other day, I also think you said that you can't take Turmeric/Curcumin when we spoke the other day. That's the main thing I would suggest but I'll keep thinking.
You might ask for some magnesium to be put into your IV after surgery. That is anti-inflammatory.
In addition to the salvia m. (dan shen) for circulation and corydalis to help relieve pain . . .
Andrographis reduces inflammation for me. I know you've used this in the past but, remember, if you're not used to that it can cause nausae at first. It will increase urine output but reduces edema better than anything else I've ever used.
Remember Ginger capsules for right after surgery to minimize nausea. A good greens powder would be appreciated by your liver, too.
Best of luck to you. Thoughts with you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Evaluation of the topical anti-inflammatory activity of ginger dry extracts from solutions and plasters.
----------
Topical magnesium would also be a possibility.
You'd want to be sure any topical application would not react to the metals but I would assume the hardware would be from non-reactive surgical metal. Still . . . ?
ARNICA MONTANA HOMEOPATHIC and as topical TRAUMEEL will help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see no direct link or phone numbers. Look like you'd have to go through the main operator or google their names. Most have their private practices and only to go Providence sites on certain days.
I've worked with Chandler (years ago for IV tx) , the second one on the list and highly recommend him. Even if you procure service privately and not officially through the hospital, he would be cleared as a staff member and may be able to meet you there, and treat you in the recovery room.
He could order certain things for IV treatment that would be superior to oral meds (that you may not be able to stomach at that time). He may also be able to offer some advice if you could possibly talk by phone today. With surgery tomorrow, it may not work, but you could just luck out.
He, or others on that team, would likely understand your methylation issues. He may or may not remember me (it's been many years) but since I was the first lyme patient he ever had who had lyme, he at least has some familiarity with that. He is NOT a lyme doctor, though, but would have a clue.
I'd feel better if you could sign on with him or similar ND. They will have much more information and expertise. I'm only offering a look at the band-aid box.
I'd also ask the anesthesiologist to do hypnosis (or at least some guided instruction) for the very best as you experience the healing procedures and, afterward, as your body heals in remarkable ways. Most anesthesiologists are very glad to provide such guidance or positive suggestions.
Good luck, now. I hope this goes exceedingly well. ---------------
[ 09-15-2010, 04:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry that link took the thread long. If other replies are hampered, I'll try to change it but it's so specific I hope it works fine to be left there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To add to the DAN SHEN (SALVIA m.) notes from yesterday's email:
(I don't see how to order but they provide details about their product.)
Capsule Size: We use only 100% Gluten-free, Vegetable Cellulose, Certified Kosher, size "00" capsules for all of our encapsulated products. Each capsule contains approximately 600 mgs of powdered herb material.
Ingredients: 100% Corydalis Botanical Extract (10:1) - Our products contain 100% pure plant-based/natural materials using no fillers, grains, yeast, sugars, binders, excipients, starches, or synthetic materials.
Call us toll free at 888-909-8889 (local: 215-245-7038)
Shixiao San, Jin Lingzi San, Liang Fu Wan, and Baishao Gancao Tang
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine, Portland, Oregon
excerpt:
. . . Corydalis is added "to increase the pain-relieving effects of this prescription."
To compare Shixiao San and Jin Lingzi San, it is helpful to examine two of the main ingredients. Yang Yifan (9) compares corydalis to trogopterus (wulingzhi):
Corydalis and trogopterus enter the liver and spleen meridians. Both are able to promote blood circulation and remove congealed blood. They are very effective for relieving pain.
Corydalis is pungent, warm, and slightly bitter. It is characterized as entering the qi and blood level and promoting the qi movement and blood circulation. It is an excellent herb for relieving pain and its action is steady and strong.
In clinical practice, it can be used alone and in TCM is considered to be a painkiller. If it is fried with a little vinegar, this increases its effect in relieving pain.
Trogopterus is bitter, sweet, and warm. It can promote blood circulation and stop pain but its action is gentler and slower than that of corydalis. Meanwhile, unlike corydalis, it has no function in promoting qi movement. The strong point of this substance is that it dissolves congealed blood in a gentle but a constant way.
It is effective for removing congealed blood without the side effect of injuring the normal part of the blood, so it is used for chronic diseases in which congealed blood is not easily and quickly removed.
Corydalis -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by TerryK: Anyone know of any good antiinflammatory medications that the doctor will find acceptable and that will work?
I know of two things that will help.
One is systemic enzymes. Serrapeptase is used to reduce the swelling and inflammation of oral surgery. As it circulates throughout the body, it should help other surgeries too.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Carol offers excellent reminders.
LED . . . the hospital may have light therapy right there but you'd have to ask about it and arrange for it in the recovery room and then at your out-patient rehab appointments.
I know that Meridian Park's P.T. Department has infrared light tools (they are with Legacy system and not Providence, but Providence may also have them).
Terry, also remember to use your rife machine for 10K (anti-inflammatory) and for the bone healing frequencies. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I have also been warned against using cortison,the most common steriod. But I don't know of any who's been using abx at the same time as they are taking cortison.
Personally, I think I would have done a week or so on cortison, if the circumstances required it (together with abx). Chances are the abx will be enough to keep you from relapsing.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
posted
Best wishes from me too. Please let us know how it went. If you decided to take steroids, if so what type and dose, and how it went...
I might do it myself. Cortison.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Ask for Toradol. It is a very powerful RX anti-inflammatory (not a steroid). Your doc will know what it is. It is commonly used for all kinds of ortho injuries and surgeries.
Good luck with your surgery tomorrow. Sending you hugs and prayers Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Bromelain is a very good anti-inflamatory supp. I have taken 6000 GDU tid without any problem. It will clean up your blood at that dose too.
MSM is another that you could pair up with Bromelain. Rub a little vit E as close to the area as you can to help with healing after the surgery.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Keebler - thanks so much for all the info and links. I had no idea they worked with ND's. My herbalist muscle tested me on the phone and I started rife today. I noticed it makes my finger hurt. She has me doing stuff for my immune system, emotional blocks, circulation, detox for anethesia afterwards and numerous other frequencies. Nothing for inflammation though so I'll add the one you suggested. I would like to have my choice ofrehab places in order to get someone with light therapy but the doctor was adamant about this one therapist. He said she is the best in the city.
Carol - I agree serrapeptase is very good. I have some on hand so I'll start that after the surgery. It can have a blood thinning effect so I'll wait until they are done with the surgery first. Thanks for the great suggestion. The rehab place may have light therapy. Wish I had one but I don't. Maybe someday.
peterj - I'll let you know if I take steroids and the outcome. I will certainly be very vocal about not wanting them though. Thanks for your well wishes.
tutu, thanks. I can use all the well wishes I can get. I don't trust most medical people so this is hard for me. Good idea, if they insist on steroids, I'll ask for a small dose.
Sammy - That will help a lot. I'll ask for Toradol. Thanks for the hugs and prayers.
micul - I cut the bromelain out as soon as I found out I was having surgery because it can be a blood thinner. I take high GDU but only 4000 per day. I'll move it up after the surgery. Thanks for the suggestion. I can't take MSM due to the sulfur. Wish I could.
I appreciate all the help.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Terry,
There are lots of good suggestions here.
If you really do need steroids, ask you LLMD for an rx for Cortef (generic is hydrocortisone), which you could take at a low dosage. And ask your LLMD about what dosage to use.
It's what our adrenals make, so it's more bio-identical. Plus, you can take much smaller doses. The equivalency to Prednisone is 4 to 1, ie, 10 mg of Cortef = 40 mg of Prednisone.
Usually, you figure up to 20 mg per day of Cortef is ok, even with Lyme. Maybe up to 40 mg, if need be. Sometimes people use more for a specific situation. But, of course, you want to take as little as necessary for obvious reasons.
I send you lots of good wishes for a successful surgery and a speedy recovery. Boy, the things we have to go through that we don't expect or need . . . !!
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
I might begin on steroids myself tomorrow... If you have any news about yourself, then it's highly appreciated.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- peter,
Why would you be on steroids tomorrow? Are you having surgery? Do you have a LLMD?
Steroids can be a disaster with lyme. Unless surgery, please avoid.
Now, if you are talking about Cortef (hydrocortisone and VERY LOW DOSE, that's another matter completely. Many LLMDs suggest that for those in whom adaptogen herbs are not enough for adrenal support.
FLORINEF, too, is frequently used for low blood pressure (NMH, POTS).
But, neither Cortef nor Florinef are referred to as "steroids" here in the way of prednisone, etc. that can be absolute disaster without an expert LLMD's guidance.
Sometimes, steroid eye drops are required but, again, with a LLMD's guidance.
==================
Terry and I live in the same city and speak by phone now and then. Before her surgery, she told me that her typing would be limited, if even possible at all.
She will be fitted with a contraption on her finger.
This was to be an out-patient surgery. Still, it will likely take her a day or two to come around at all. She has good support and is a real trouper with all of this.
I'm sure we'll at least hear a few words from her in a few days. She'll be glad to see messages here hoping that it went well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- peter,
Not all forms equal any of the other, no matter what that chart may say. Each form is something different. Even a tiny bit of prednisone can spell disaster. A tiny dose of cortef, usually not, but the adaptogens are usually tried first when going for adrenal support.
Again, in Terry's case, this was only about the surgery.
Do you have a LLMD? Is your LLMD guiding your treatment?
We don't want you to get clobbered like many have been with predinsone, etc. That stuff nearly killed me. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I am sort of in between. I've got a great deal of symptom improvement from lyme treatment. But I got a flare of symptoms when I tried antivirals, the flare is still here 4 months after I quit. Very much point in the direction of a inflammation as a consequence of that, so I am thinking about trying prednisolon.
If you have used it, and have had negative reactions, could you please tell some details? Dose and duration.
It's not a easy choice to whether try or not try, despite reason to suspect heavy inflammation.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Actually, it a very easy choice: Just say "NO"
What kind of doctor are you seeing?
Prednisolone is a corticosteroid drug with immunosuppressive actions.
Corticosteroids can ruin your life. Absolutely, positively. Do NOT, Do NOT fall into that old trick of thinking this will make your life better. It can make your life a hell from which the return can be nearly impossible.
Oh, and while we're on that note, corticosteroids can increase depression and anxiety to horrible degrees, putting one in far greater danger of suicide. I know. I've been there. I had no LLMD (never even heard of lyme at that point) but some sweet talking doctor that thought corticosteroids would be the magic bullet. Magic, not. Horror, yes.
It would take years to recover from that damage from brain infection that nearly killed me when it flared from the steroid use. I cannot even begin to fully describe the on-going destruction. It was years before I was properly diagnosed.
There is no LLMD on the face of the earth who would be giving you a prescription for corticosteroids.
There are FAR better ways to treat inflammation related to chronic infection. FAR better ways.
What kind of doctor are you seeing for this terrible advice? Corticosteroids are never to be used by patients with chronic infection - unless in a life-threatening situation and covered fully with specifics abx under the guidance of a LLMD or other doctor who would be addressing other infections.
This includes chronic viral infections - any infections. And steroid use is often how such infections BECOME chronic.
This needs its own separate thread as we're highjacking Terry's. But I'm afraid this will get lost. So, see the next post.
Possible side effects include fluid retention of the face (moon face, Cushing's syndrome), acne, constipation, and mood swings.
A lengthy course of prednisolone can cause bloody or black tarry stools; filling or rounding out of the face; muscle cramps or pain;
muscle weakness; nausea; pain in back, hips, ribs, arms, shoulders, or legs;
reddish-purple stretch marks on arms, face, legs, trunk or groin;
[poster's interjection here: those marks are likely bartonella raging from the steroid use. Bartonella is a vector-borne infection that often goes along with lyme,]
thin and shiny skin; unusual bruising; urinating at night; rapid weight gain;
and wounds that will not heal.
Swelling of the pancreas has also been reported.
Prednisolone can cause increased blood sugar levels for diabetics.
[poster's interjection: lyme increases risk for diabetes, it best to avoid anything else that further heightens that risk.]
Other effects include decreased or blurred vision, increased eye pressure, increased thirst, confusion, rare cases of dementia in otherwise healthy elderly patients and nervousness.
It also is reported to cause insomnia when taken. . . .
- full page at link above, just a start to one's personal research.
===============
I made a couple of notes about some of the side-effects but could have added more that can likely be from raging infection resulting from steroid use, itself, rather than a typical side-effect.
Weight gain can be huge. Really. And these things mess up your body so that loosing weight can then become nearly impossible. Or the opposite occurs. All bets are off.
They also don't tell you that if you have any emotional reaction (and that would be likely as steroids really mess with emotions but so do raging infections) that you would probably then be diagnosed with a mental illness and your file is, for all intents and purposes, closed. Forget real help from then on.
I lost my job, my ability to drive, my car, my apartment, my ability to walk and talk. At that just touches on the damage.
Seizures launched me across the room at the slightest sound. But no doctor could even believe their eyes and I was dubbed a fake. Seizure meds made it worse (due to undiagnosed liver condition made worse by toxins from undiagnosed lyme). But the meds making things worse seemingly confirmed the ignorant doctors' erroneous diagnoses.
Yes, a huge part of my decline was due to there being no LLMDs in my state but a large part was the actual use of steroids in a patient not getting proper treatment for infections. I was at least treading water before the steroids.
Although I became very ill in 1990, steroid "therapy" started in 1993. I still can't drive today and can barely walk in any environment that is busy, even a parking lot.
It would be years before an ear specialist told me I likely had lyme (but he could not treat) - and years before I could travel to consult with a LLMD. So, lack of a good doctor caused so much damage.
I guarantee your doctor is not lyme literate, not ILADS-educated.
Crawling back out of such a land mine crater marked the hardest years of my life. It took years to recover my stability from even a couple short courses of prednisone - intensified by about 6 - 8 cortisone shots to various joints over a couple years' span. The doctors all said the shots were my only option. They were wrong. Nearly dead wrong.
Please just say "NO" to steroids and turn away. Run, don't walk to a doctor who ILADS-educated. Most of them are well versed in various stealth infections. -
[ 09-17-2010, 03:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.D.
Excerpts:
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment, Dr. Burrascano (see link at bottom of page).
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.
. . . 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). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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).
Topic: NATURAL SLEEP - Links to articles & supplements -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
The surgery went well. Finger hurts today but I am on pain meds for now.
LLMD's office said no steroids. I told them at the hospital and surgery room personell and they said OK. Surgeon told hubby and I at consult I would need an anti-inflammatory but after we told him no steroids he didn't give anything.
I'll use some of the suggestions here and perhaps some Ibuprofen. Will try not to take ibuprofen for long cause it can be hard on the kidneys.
Thanks for the suggestion rumi - I don't know if cortef is similar to fluornif but fluronif makes me swell up. I'm afraid of anything that might behave the same. Luckily I don't need anything for now. Thanks for the good wishes!
peter - I would not take steroids unless forced. My mother was told she needed steroids (before we knew she had lyme). Her health declined until she eventually ended up in an assisted kiving facility in her early sixties. The youngest peson they ever had. She has been there 15+ years. I blame steroids.
I had a flare with anti-viral treatment as well. Did you know that viruses also release heavy metals when treated? It might help you to get a binder on board.
Typing is making my hand hurt so I won't be able to type much for awhile. Thanks so much for all your support. It really helps!!
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Terry,
I'm so glad to hear that the surgery went well and you are bouncing back. Thanks for letting us all know. I woke up wondering.
Of all that I've used, andrographis has been the best one to visibly reduce edema in my hands, feet and ankle. Just drink lots of water, too.
Good luck at your continued recovery. I hope it goes remarkably well. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
I am so bad lately I have problems with reading, so I will take it bit by bit. Most likely I have got this strong inflammatory syndrome on top of all the other things (http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome). The symptoms flared like never before, and are getting worse weekly. It's after I used HAART (for XMRV). The new symptoms doesn't feel like typical lyme symptoms.
I wish I lived in the US, and had money and access to a doctor where I could just get help. But I don't, so I when all comes to all, I have to rely on myself. So all info is useful. Thanks again for the posts.
You wrote that you had experience with cortison yourself. Could you please share dose and duration before you got the reaction?
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- NO dose is safe with infections. It seems as if you are playing with fire, wanting to know, well, what dose would be okay.
No dose is okay. There is no bargaining with the devil.
I had horrible reactions to even 1/4 of a tablet of the lowest dose prednisone. But, I persisted as the idiot doctor told me it would get better. He was wrong.
Now, it took me several tries over time - and I needed the energy that prednisone provided to teach my all day Saturday classes then.
But, I had to quit my job later when I could not even make out the alphabet to read my students final papers or design a test. It was a false friend and in the end, the fall was not at all worth the little extra energy I got in order to fake being well for a few hours a week.
Even cortisone shots that were guaranteed to stay in the ball of my foot, or my wrist, clearly shot my nervous system to the moon with a huge thump.
If you persist with thinking that steroids are the magic key, you will find a deep dark dungeon.
There are MANY other options.
Can you move to be closer to a LLMD? Even if you can't get a LLMD, there are MANY other options.
Get to a good herbalist or naturopathic doctor. ILADS-educated LL ND is best but if you don't have that option, most natural medicine doctors can still help to varying degrees, especially with safe anti-inflammatory agents.
Start with magnesium, curcumin, etc.
Go gluten-free.
Find your local lyme support group (they are all over the world).
Steroid Street is not the yellow brick road. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
I live countries away from a good LLMD. And even if I lived near, I couldn't afford it.
Don't get me wrong. I don't think steroids will help lyme symptoms. The problem is that I am going downhill fast from a reaction to HAART (see post above).
My vision has been getting worse so quickly it's scaring me. And all the other symptoms that have come along with that seems very much to be related to a strong inflammation. I can't let it continue, and I can't act...
Nothing is easy.
I am on abx, and would naturally not stop abx if I added something else. That way I would be more protected than some others.
But nonetheless, I like to know how it went with others before acting myself.
I know of just a handfull others who's done it, and what they experienced.
I don't want to go blind before I am through my twenties (which I might if I do nothing about this inflammation). And on the other hand I don't want to get a relapse on the borreliosis symptoms.
That's why I would really like to hear dose and duration. Do you know how long you stayed on them, despite getting worse? (how many weeks approx)
If I tried this, it would be a way to troubleshoot: I'd take a short course, and if it works it would strongly indicate what's causing the new symptoms. If it doesn't work, I've turned that stone. And to do my best to prevent a lyme relapse, I'd really like to know how things went about with others.
Thank you for your posts. Much appreciated.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- [edited after posting: I see you removed your questions. I assume you moved on to a new thread ? I'll check back later and delete this if I see you've relocated your questions.]
I'll say again: no dose is safe. Unless under the care of an expert in stealth infections. Yes, sometimes steroids are needed with certain vision problems - but best to use only if the infections are also being adequately addressed.
Inflammation is most often a result of infection or other influences of toxicity. I've shared all I know and this must seem like bullying - so I must rest. You can take it from here.
posted
I didn't start a new thread because Terry seems to be done (sorry if I misunderstood here). I have such vision and fog problems that I have problems reading, so I wrote, wrote that I'd repost, and reposted).
My inflammation is a reaction to HAART for xmrv.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
posted
I don't think of it as bullying :-) I appreciate the advice. I am in a hopeless situation, and gathering data is what I have to do now.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No situation is hopeless.
Looking up HAART - I see it is "HAART stands for highly active antiretroviral therapy"
If the treatment is causing inflammation, can you add in supplements to help ? I hope your have an expert in XMRV.
Am I to assume your XMRV doctor is the one suggesting steroids?
If so, I'll let this go as he may have protective measures in mind. But I'm surprised that less risky measures have not first been employed. Bilberry extract and Curcumin is a good start. FIsh oil, too. OmegaBrite.
A gluten-free diet helped me more than any steroids.
I wish the best of luck to you. Take care.
I will look for a couple key vision posts I've collected over time but will be back after I rest.
Start researching BILBERRY. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
LD (with its ocular manifestations) is a worldwide disorder that is increasing in frequency. It is a treatable multisystemic disease that presents in three stages of severity.
It can present with unusual forms of conjunctivitis, keratitis, cranial nerve palsies, optic nerve disease, uveitis, vitreitis, and other forms of posterior segment inflammatory disease.
. . .
* TOPICAL corticosteroids can be used for anterior segment inflammation.
An antibiotic therapeutic trial can be used for posterior segment or neuroophthalmic disease.
* Systemic corticosteroids without concomitant antibiotics should NOT be used in the treatment of ocular LD. . . .
posted
Thank for your your wishes and support. It means a _lot_ to me.
I quit the HAART four weeks ago. I quit because I began getting symptoms strongly resembling the well known IRIS response (it's a _strong_ inflammation response from the immune system, normally lasting not long, but that's not always the case).
The IRIS response continues regardless of stopping or not stopping the HAART treatment. And I want to prevent it from making me unable to see. My eyesight is dear to me.
But a lyme relapse would also be horrible.
I know of a girl with lyme who used steroids for two weeks. Became worse, quit soon after, and didn't have long term problems after that. But I only know of a handful of experiences.
If I can quit once I feel something, than that's very useful. But there are no guarantees in life. And I know I don't have one now either.
If I gained back something, than that would be fantastic, but I am realistic, it's about stopping it sliding further downhill.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please read from the doctors' posts above.
For the kind of symptom relief you seek, even short course systemic steroids will not help and can cause serious and irreversible damage.
Topical steroid drops may be an option for eyes but, again, the infections themselves must be fully considered. Steroids with unchecked infections can spell disaster.
Support with key nutrients, antioxidants and a gluten-free diet to help control inflammation.
Be sure to search past threads for all the options to lessen inflammation. There are many choices. -
[ 09-18-2010, 03:51 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks for the excerpts. I suppose they hold true if I am sure that it's lyme which is messing with my sight, and not the haart-induced inflammation.
Posts: 275 | From Home | Registered: May 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Keebler and tutu! Appreciate you both!
A few years ago we had a 19 year old in our State who was diagnosed with MS. They gave her steroids. Turns out she had lyme. She died. Steroids can be very serious for someone with an infection because they suppress the immune system and let the infection spread like wildfire.
Bartonella comes to mind for eye issues as well as lyme. You will need a different treatment for bart than for lyme. Mangosteen is great for eye inflammation.
When treating one infection, others may flare. Not at all unusual.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Terry, I'm so glad that you got through the surgery fine---and without steroids of any kind. That's the best,of course. Yes, you are a trooper. As we all are, I might add.
Peter, please, please heed Keebler's advice on the steroid issue! It is a matter of permanent damage if you go down that route!! No short term relief is worth that.
Beg, borrow, do anything short of steal, to get some money to allow you to come to the states and see a good LLMD, and hopefully a good LLMD opthalmologist! Your vision and your life may be at stake here.
If you are determined, you may find a way. I don't know where you live, but quite a lot of patients come here from Europe, etc. And then follow up with phone consults and periodic visits to the states. You're too young to throw your vision and life away without proper treatment.
And on the Cortef equivilency---the first part of what I said was right. Not sure if I reversed the second part. But, in any case, this is not something to fool around with without an LLMD's guidance.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Keebler, my previous LLMD who is world-known prescribed Prednisone for me for 3-4 days w/o concern. i didn't take it, but...... i guess you never know.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks Rumi. It's so easy to feel like a victime when one set back after another occurs but then I look at my neighbor who was living a great life and then suddenly broke his neck playing tennis. He is paralyzed from the neck down.
My sister is so very ill with no treatment and my brother is too. So many out there suffering with lyme and don't know it or won't believe it. Things could be worse!
It's so much easier getting through all of this with the support and education that I've gotten at lymenet and I have a very supportive family too so I am very lucky.
I count my blessings everyday!!!
hugs, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- seekhelp,
First, you were under the care of LLMD so infections were being addressed. I thought you had been prescribed eye DROPS, though, not systemic Rx.
Second, 3 - 4 days for an emergency situation as you had with your eyes, ALONG WITH treatment for lyme, etc., is another matter entirely than getting onto ongoing steroids and not treating infections.
You were under the care of a LLMD.
For those who have chronic stealth infections, the indiscriminate use of steroids without guidance from those expert in such stealth infections can result in permanent damage - or even death. It's happened more than once.
Thinking one can stop or reverse the spiral once it starts is magical thinking. We'd all like nothing more than to find that magic bullet. Steroids have very limited use under very tight controls.
Stealth infections are mighty foes, indeed. But we have other tools. Many others. -
[ 09-18-2010, 04:57 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not specific to lyme or other tick-borne disease, yet relevant, especially in the suggestions of what can help. ------------------------------
And this has me reminded about what Marnie has posted regarding anti-inflammatory action of
OmegaBrite - easily found through Google.
=============================
Much more discussion about inflammation - and what helps - has been posted in past threads on eyes.
Search archives. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Hi, Terry.
Glad to see you are up a bit. Hope you find some comfort in our cozy, cloudy day. Curl up and doze, dream of a sunny day, swimming in a turquoise pool nestled into a red rock canyon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Peter:
You might want to look at this current thread: -----------------------------------
posted
Thanks for the link Keebler. I have many lyme related vision problems (which I had for years), but I think these specific ones I have been getting with the symptom flare is likely to be inflammation related, as they came in the end of a antiviral period.
i have also read about a death in central europe. A girl who had ms like lyme, was off abx, put on steroids and died.
Seekhelp, thanks for the info about you being prescribed the drugs. Four days would probably be enough to see if it helps. As a troubleshooting strategy. Do you know/could you check which dose you were prescribed?
Posts: 275 | From Home | Registered: May 2007
| 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!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic