posted
Rheumatologist prescribed medrol 4mg 6 days with refill to use for diagnostic tool. Is this safe with lyme. It will be short term. I dont want to say definitely no as he is running blood work. But if it will interfere with lyme outcome-I dont want to risk it.
Posts: 509 | From southern new jersey | Registered: May 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Medrol is a steroid.
This can be very dangerous for someone with lyme or other infection.
It can not only "interfer with lyme (test) outcome" and make diagnosis nearly impossible for years to come - as steroid dampen the immune response and dampen your immune system - for a long time after stopping, them, too.
Steroids can have very bad effects on your body that could be long-lasting.
As you seem to be asking before taking this, or even filling the prescription -- that's good.
However, if you have started taking it, you would need to get advise from someone very well educated in lyme before just stopping it. And be very careful to take care of your mood -- when this wears off, you could become extremely exhausted --
be sure to eat well - avoid sugar and simple carbs as this can also make you crave sugar -- and, even alone, it can trigger surges in your blood sugar levels.
If you happen to have diabetes, be especially careful.
and rest according to your established patterns - even if you do not feel like it.
And, as this can give the body a wonderful feeling of feeling great, keep in mind that is a trick. Do not overextend your energy or joints, etc. in any way, for it can boomerang badly.
I had a set back of years from taking this steroid, even for just a few days or a week, twice within a month. Years of damage to me -- because I did not then know that I had lyme, et al.
This drug nearly cost me my life. Seriously. I am not overstating that for dramatic purposes.
There are MUCH better & safer things to help reduce inflammation.
Please find a real lyme literate doctor who will know what drugs to avoid. This matters so much.
Perhaps one of the most important set of links to study, and study again. Your life - your quality of life -- in so very many aspects --
and your ability to be part of life - depends on knowing this information.
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
&
why BIOLOGICS that also dampen immune function can also be just as damaging if infections are on board . . .
(any that may be on board, in addition to "just" lyme) are not being properly identified & thoroughly addressed - in a proper manner with combination treatment that would be appropriate. -
[ 11-03-2019, 02:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you "dont want to say definitely no as he is running blood work"
I would not trust him with that, either, not if for testing for lyme, other tick-borne or chronic stealth infections.
If he is running other kinds of tests, you should not have to be on a potentially life-risking drug to get those done.
Please do not feel like you have to do all he suggests to be a nice patient.
Rheumatologists generally are not educated in lyme and other TBD (tick borne disease).
the tests they order are often not done at the best labs or under the best conditions and are - often - engineered to just not "show" lyme due to the inferior methods of testing.
Now, this doctor may be very nice and well intentioned. But their training just does not include that for tick-borne infections and their professional medical affiliations basically discount the idea of any chronic or persistent infections.
They are often not really "allowed" or encouraged to look beyond their tight mode of operation. Some just might not know, well, what they don't know. He may think he's doing the best for you but you do know more, so it's up to you to find a doctor who is trained, educated, aware, informed about the matters that apply to you.
And, as many here, if you cannot afford a LLMD or LL ND, I hope you can stay a step ahead in at least what not to do.
Be sure to get the basics of lyme & treatment paths so that you have some framework and also find other ways to do the best you can, even if on your own.
Contact THE ROAD BACK FOUNDATION -- you might find a good doctor through them as they are aware of various infections' involvement in rheumatic conditions. Some of the basics are the same as with lyme assessment / treatment.
Advocating Antibiotic Therapy as an Effective Treatment Choice for Rheumatic Diseases -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While you search for a doctor with the experience you need:
Topic: MAGNESIUM - Informational Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you've been here so long - or came back, you may not need a new lyme test. It could be that your previous treatment was not comprehensive enough, or that remission was not as long lasting as would have been hoped . . . or new infection? . .
but as you've been ill for some time, the kinds of assessment done by most rheumatologists is not likely to take into account the complexities of lyme . . . or the other tick-borne infections.
IGenex is a good lab to check out for information, though, no matter what stage someone finds themselves at. A first step to testing research.
Diagnosing Lyme Disease (&/or whatever else is going on)
SEE the WESTERN BLOT EXPLANATION links here regarding lyme.
Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.]
quote:Originally posted by Keebler: - Medrol is a steroid.
This can be very dangerous for someone with lyme or other infection.
It can not only "interfere with lyme (test) outcome" and make diagnosis nearly impossible for years to come - as steroids dampen the immune response and dampen your immune system - for a long time after stopping, them, too.
-
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The only lyme test ordered is the western blot. I just had 2 lyme screens from urgent care and primary. Rheumatologists physicians asst is who i saw and he mentioned including an infectious disease and neurologist. He also mentioned chronic lyme and parasites. Doctor come in and mentioned post lyme syndrome and neurologist consult. Neither did a full exam. I'm getting the tests done only. I thought it was interesting how they appeared to have different views of lyme.
Posts: 509 | From southern new jersey | Registered: May 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- no matter what test you have ordered, chances are they are not being done correctly, at the correct labs that do the tests the best.
Talk to your local lyme support group leader BEFORE you have any bloodwork drawn or any test ordered. This matters.
infectious disease doctors are generally lyme deniers as are many, if not most, neurologists.
Specialists might be of help - later - after a new & proper assessment for how lyme / TBD might have come back up for your body . . .
However, any expert or specialist -- if they are not really "lyme literate" and TBD "literate" can fail you.
Sure, there are other things / other diagnoses to consider but lyme / TBD must be understood to be able to sift out what's what and what's not what, so to speak.
If they deny lyme, if they are not aware of what lyme / TBD can do, they have blinders covering at least half of their vision.
And you need a doctor with eyes wide open.
You might connect with your local lyme support groups for a better understanding of why it matters so very much to find an ILADS "educated" doctor or someone who knows the research / conference presentations / books / articles by ILADS LLMDs.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
The link for this document in the set above is out of date and it's a locked thread. Here's a link that will get you there:
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages -
Again, if a LLMD is not available to you, still read up on how they assess, consider, treat.
And become familiar with the work of master herbalist Stephen H. Buhner.
And AVOID GLUTEN - even if you are not celiac, there is research that points to consumption of gluten being very damaging to the gut lining and, thereby, causes so much damage to the immune system, etc.
Dairy, too, can be very inflammatory as can wheat, soy, corn, etc.
I know this is a lot and I'm trying to make a kind of crash coarse flash card set or syllabus . . . an outline that can help you get started on the right path . . . and to avoid some wrong turns. -
[ 11-05-2019, 12:34 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
So did something show up on the lyme screens?? Sounds like it did or they would not be talking about infectious disease doctors.
If your initial test came back positive, there is a very high probability that you have Lyme. Most of the screening tests come back falsely negative. So if it was positive, that is a big deal.
FIND AN LLMD ASAP!!!
GET A WESTERN BLOT FROM IGENEX LABS!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Lyme tests negative. No western blot run. This dr is ordering it. The only thing on my medical history is lyme disease. No family ever had rheumatic or autoimmune.
[ 11-05-2019, 09:17 AM: Message edited by: marie ]
Posts: 509 | From southern new jersey | Registered: May 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's hard to know the time line here when you say about the Western Blot that ". This dr is ordering it"
Is that that he intends to do so later on? Or in the process of it being done?
Did you already have the blood drawn for the new test?
DId you start on the steroids already? If so, the test results will most likely be off.
Do you know which lab it's going to?
Why are other tick-borne infections not being tested, too, especially babesia? With your current symptoms, it's very important to consider that, and others, too.
Looking at only lyme can miss the mark and slow down any progress regarding potential treatment paths.
There are many things to arrange BEFORE having the test done.
For instance, if already drawn, was blood drawn on a Thursday or Friday? If so, that can interfere with the outcome.
Most labs do not do the Western Blot correctly. You need to know which lab, study them and compare them to the way IGenex does their testing.
How the blood is prepared for shipping, the carrier used for shipping to the lab, the time between blood draw, shipping, reciept at lab and day / time of the test, etc. all matter.
It's important that an ILADS educated LLMD or LL ND ORDER the test because they know all this, and much more.
But if you cannot or have not yet been able to get to a LLMD, talk with the leader of your local lyme support group.
They can help you become informed in how you can ensure that any test is ordered / prepared correctly - and understand how to navigate all this.
There is a huge risk or running any test with just any lab that any doctor orders. See the reasons why tests fail.
Once an inferior test is in your file, there is usually zero chance at getting a doctor to explore beyond that, usually zero chance.
I'm also curious as to your previous treatment . . . since you were previously diagnosed with lyme, you may not need a new test.
You DO need a doctor who really understand lyme, though. And one that is not going to claim "post-lyme" as that can cause great failure in treatment options if you have chronic lyme / persistent / under-treated lyme or other tick borne infection that complicates.
It's important to understand EACH - yes, EACH ONE of the ways the test can get messed up and plan to avoid that. Talk to your local lyme support group - and be sure they are "ILADS" "minded".
posted
It's not going to work out with doctors unless they are LLMDs - Lyme-literate medical doctors. Sending you a private message.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I had Lyme in 1996-tick bite, bulls-eye rash documented & treated w/ doxy 21 days. 4months later-neurological symptoms-eye rolled around, muscle twitching, leg going out, forgetful. then 2 months later-flu and ongoing bouts where bedbound along with chronic symptoms. Late Stage Elisa & Western Blot negative -so no treatment. Saw LLMD in 2003-1 1/2 years oral abx-Biaxin, Cipro & Flagyl added at the end. No result. Dr then indicated she didn't know what was wrong with me.
A few years ago symptoms went under surface except problems with sensing left foot when walking & low functioning, and still can't drive.
Suddenly after dental cavity feeling 6/19 I was sick & have burning, numbness, itching skin, feel ill, rashes, joint pain and now fatigue. May have been re-infected also. I thought things were the same but now it seems different-more widespread and constantly feeling sick. I was treated with doxy 28 days then NSAID 30 days. Had a few moments at times of feeling well. They always state that I was treated appropriately-even now with 28 days of doxy.
The physicians assistant who I saw first mentioned chronic lyme and parasites. Then doctor who came in briefly at end mentioned post lyme syndrome. He did mention ordering a more specific lyme test which now when I obtained the order is the western blot. I don't know if I want to call him to add at least the 3 coinfections. what about mercury from filling? He also wants me to see a neurologist due to possible weakness.
I am so tired and extremely scared of all of this. Thought I was done with it & accepted where I was. I have now heard that Lyme can trigger fibromyalgia and auto-immune. 1 study had patients with fibromyalgia and lyme & fibromyalgia symptoms did not go away with treatment.
Posts: 509 | From southern new jersey | Registered: May 2003
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