Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities. -
Posted by Keebler (Member # 12673) on :
- Steroids are commonly prescribed for various "autoimmune" conditions. Why that can be serious, even fatal, for someone with lyme or other chronic stealth infection (unless lyme, etc. is/are also addressed at the same time, by a LLMD or Cpn doctor who knows what they are doing):
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
HEAVY METALS, MOLD, PORPHYRIA, PARASITES, other chronic stealth infections, etc.
-----------
Be sure ALL form of Borrelia are addressed, not just the spirochetes. There are other forms beyond the cyst form but I can't get into all the others. For now, though, at least this information can help to know if the cystic form might be a concern if neurological symptoms are worsening.
Topic: replication within cystic forms of lyme -
Posted by droid1226 (Member # 34930) on :
Well then you get your symptoms managed, hospital and Drs covered, and a better way of life than many with lyme. I'd stay far away from steroids though like Keebler said.
I think even mainstream drs know there's a germ that causes these autoimmune problems. And lyme can induce MS and other diseases.
I do think there's a distinction though between MS and lyme in a lot of cases. Mostly numbness/vision and one side body problems that aren't extrememly common in lyme patients.
All you can do is fight lyme Larae. I remember you coming on here right after you got diagnosed, it was right after me. I'm no better now than I was that time either.
Posted by Keebler (Member # 12673) on :
- TAURINE DEFICIENCY can cause a lot of neurological and vision damage, too.
Especially if not getting enough eggs, fish, and a variety of meats (in the right amounts, from the very best sources, not factory produced), it's important to supplement with taurine.
Vegans, vegetarians and even those who do not consume something in the category above daily, must supplement as taurine is not made in the body and while in some plant foods, it not high enough amounts.
I also tend to think that those with any neurolgical condition are wise to consider taurine supplements, anyway.
A combination of taurine with magnesium is especially good for neurological issues.
FISH OIL, of course, too. -
Posted by Lymetoo (Member # 743) on :
Be careful of a Dr dxing you with MS.. it's a diagnosis of exclusion. They have to rule out everything else, then say "It must be MS" if they find nothing.
---and you know they wouldn't be using Igenex to rule out Lyme and coinfections
Stay away from steroids and ALL of the potentially deadly MS drugs.
Posted by Keebler (Member # 12673) on :
- Also keep in mind the politics of the new city/state where you live. "MS" is a popular and profitable endeavor for OHSU & other medical centers - and that is just one reason why lyme is "not allowed" in Oregon.
If suggested that you have a lumbar puncture (spinal tap) to dx "MS" it's important to know that can miss a lot, and is never a good test for lyme. But you already have testing for lyme.
Millions in research grants are awarded for "MS" and the like. They have to keep generating interest. The pharmaceutical industry ties to "MS" are also strong. And doctors profit from that.
Even the ever-so suggested spinal tap / lumbar puncture racks in tons of money when it's not at all a very good test and it invasive on top of that. In Oregon, the doctors just love, love, love to get folks in for that spinal tap, though. Just be aware of that.
Now, of course, if there might be some approaches to "MS" or any other "autoimmune" or neurological conditions that might help with symptom relief, some of those might be considered but best discussed with one's LLMD (which would have to be out of state for you) or one of the LL NDs in state.
If you have questions, be sure to talk to one of the ILADS educated LL NDs in your city. Especially Dr. R **edited out city name**. She is brilliant and a good detective. -
[ 04-09-2013, 06:41 PM: Message edited by: faithful777 ]
Posted by Lymetoo (Member # 743) on :
She's not in Oregon.
Posted by Larae30 (Member # 35220) on :
I am in Oregon now, it has nothing to do with a Dr. trying to diagnose me with MS, I just wonder how do we/I know if it really is something like MS and not lyme etc?
I didn't know if there was a clear distinction or how one is to really know?
I've been tested for CPn etc and it was negative, but who really knows? I've also been on treatment that should also cover that, too.
I am feeling better than I was when I found out my diagnosis. My brain has done a huge turnaround. My only symptoms left are 24/7 breathing issues, anxiety (these two things I did not have at diagnosis, they appeared when I started tx), fatigue and back/neck/jaw pain. If I could breathe normally, I would be much better. I ice skated on my birthday, I went shopping, we got a puppy etc etc... last year on my birthday I was having a pity party and was extremely sick and crying. Just an example.
Posted by Larae30 (Member # 35220) on :
I have a friend who was diagnosed with MS as a teen and she is in her 30s now, steroids help her.
Posted by Keebler (Member # 12673) on :
- She may not have lyme. You do.
For someone with lyme, steroids can be fatal if not in combination with anti-lyme measures (or taking into account other coinfections).
She could also have other underlying causes such as heavy metals, chemical exposure, etc.
I have a friend whom I grew up with in my neighborhood. We were always pulling off ticks in the summertime.
She was dx with "MS" 20 years ago. Steroids put her into a wheelchair, took away her ability to talk and to even go to the bathroom by herself. Overnight, nearly, the steroids did that.
Thoughout the years as I learned about lyme, I shared some articles with her -- and when she'd be in the hospital on IV antibiotics for certain infections - she got much better. But then with the crisis bladder infection or lung infection improved she was taken off IV abx, off any abx and then went right back to paralysis.
More than once, she was close to death but when admitted to hospital and given IV antibiotics, she rallied. Then when taken off, nearly immediate decline.
Steroids seem to have contributed to her downfall but also the inability of her doctors to consider any possible infections as a connection in her case.
They rely only on the fact that she has lesions in her brain to validate the "MS" but lyme also causes lesions - and can cause all the other symptoms, too. And steroids just made it so much worse.
Same pattern with other friend whom I met about 15 years ago. She was diagnosed with lyme but then, at OSHU, "MS" and has gone downhill because she stopped treating lyme and is going only with "MS" treatment, including steroids.
She's been in a wheelchair, homebound now for at least a dozen years still thinking she has only "MS" and that lyme can't possibly be because the doctors at OSHU say it just does not exist in Oregon and that her prevous tests were "false" negative.
The lesions on her brain also prove the "MS" but can't believe that lyme can also cause lesions on the brain because the univeristy doctors say it can't be.
When brain lesions or lesions on the spine are the main validation of "MS" it's dangerous to stop there when lyme has been proven to also cause such lesions and when lyme (& co.) properly treated, such lesions have been known to decrease or even disappear.
If steroids are required at any point - and if the patient might have lyme or any kind of stealth infection - it's really important to have the advice of a LL doctor.
But there are also OTHER ways to reduce swelling besides steroids, and other ways to support immune function overdrive without suppressing it. -
[ 04-09-2013, 06:38 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Topic: what do STEROIDS actually do to those with lyme (or other stealth infection)? -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Larae30: I have a friend who was diagnosed with MS as a teen and she is in her 30s now, steroids help her.
- Then she doesn't have Lyme.
--thanks for clarification on your location!
Posted by Keebler (Member # 12673) on :
- When it was suggested that I had "MS" I was also given steroids. I nearly died for a full year, every day, I nearly died. It was that bad. I was bed-bound and beyond. Seizures, falling, loss of so many functions. I sound dramatic but I cannot possibly explain the horror of it.
Steroids nearly killed me and it took years to crawl back from that damage.
Of course, after that when I paid out of pocket through an ND who ordered the tests - I finally had Igenex positives for borrelia, babesia and ehrlichia, all that was dismissed by the doctors who wanted to stick to the "MS" label. -
Posted by Larae30 (Member # 35220) on :
What kind of steroids count? I've been on prednisode a lot because I tended to get bronchitis when the seasons changed and they always helped me?
I feel like there can be so many different causes for things and how are we to ever truly know? It is so frustrating.
Posted by VV (Member # 38828) on :
Keebler,
What size doses caused such a reaction?
Posted by Keebler (Member # 12673) on :
- Even topical steroid creams are to be avoided. Even low dose prednisone can result in disaster.
Prednisone may help temporarily but then later it can result in terrible setbacks. I felt GREAT while first taking it. Fabulous. Then all hell broke loose. Even on very low dose.
I went from being able to walk a mile at a time (when first taking it because it gave me such a nice lift of energy after a long time having been incompacitated) to not being able to walk to the bathroom.
It's like a football player with an injury playing when on steroids. It just masks the problem.
I was given steroids so that I could continue working. It helped with that, but only to a point when my body just broke.
And, there are other ways to lessen inflammation if that's why it's being prescribed. Magnesium is the number one helper to reduce inflammation, even in the brain, but most doctors do not know that.
Topic: what do STEROIDS actually do to those with lyme (or other stealth infection)? -
Posted by Keebler (Member # 12673) on :
- Q: how are we to ever truly know?
Get the best LL doctor possible. An excellent ILADS educated LLMD or LL ND knows about lyme, other tick-borne infections, other chronic stealth infections - and so much more.
Lung trouble? Consider babesia, Cpn and bacteria harboring showerheads. Acetaminophen can damage lung function, too. Gluten, Dairy and GMO foods can affects lungs, too. And, then, of course mold issues.
Amazingly, many LL doctors know all this, too. But they are more inclined to get to the cause, rather than just hand you cover-ups. LL NDs also excel in support while also addressing the cause.
But, none of this is fast or easy. I long for my days when fast and easy could take me places (hee-hee). -
[ 04-09-2013, 08:24 PM: Message edited by: Keebler ]
Posted by nefferdun (Member # 20157) on :
Low Dose Naltrexone is extremely effective for halting the progression of MS. Anyone diagnosed with it should give it a try because it is a very safe and cheap generic drug used off label at a fraction of the dose originally prescribed.
Protomyxzoa also causes MS as well as ALS and other auto immune diseases. Protomyxzoa responds well to a lot fat vegan diet. It has been know for a long time that MS responds to a low fat diet - the Swank Diet. Dr F's diet is more strict.
Posted by VV (Member # 38828) on :
Keebler,
You did not define a dosage that precipitated your issues.
The reason I ask is because for *some* of us, steroids are unavoidable. Cortisol is a requirement to live.
One of the major issues here though, is that dosage cannot be monitored by serum concentrations (exogenous and endogenous do not appear the same), and that it is shown that *healthy subjects* can vary in cortisol production by a factor of 6 under normal circumstances.
Not only that, if you follow adrenal insufficiency patients and treatment, you will find what is known as *stress dosing* is REQUIRED in order to avoid crisis in some circumstances.
Stress dosing is used when the patient experiences some form of stress, be it psychological or physical and is an addition to the daily dose. If a patient has a cold or has to fire someone at work for instance, they are inclined to need a stress dose.
The stress dose varies in increments from a fraction of the daily dose, up to 3x!! the daily.
This is all in an attempt to mimic the natural production of cortisol to meet the demands of your system (for an AI patient).
I need you to be more specific in describing the steroid issues, because as you can see it is not nearly as simple as *no steroids* for certain folks and your advise can be downright dangerous for those who do not understand correctly.
Posted by Keebler (Member # 12673) on :
- It's all here, in the set below.
Be sure to read the "steroid disaster" article - for your own safety and a frame of reference - and also see the Cortef post / links, that answers your questions.
The "Healing Hormones" article also has great detail.
The adrenal detail, first, though is also very important to explore before just jumping straight to Cortef.
Topic: what do STEROIDS actually do to those with lyme (or other stealth infection)? -
Posted by canbravelyme (Member # 9785) on :
Hey wait -- I thought Cortef was OK? Half the world here is on Cortef...?
Keebler -- we really have been through the same disability -- I remember when walking across the apartment to the bathroom seemed like a near-insurmountable trek...
I thought I'd add that ten - fifteen years ago, the GPs I saw gave me cortisone cream for my Lyme + co's rashes -- misdiagnosed as Eczema
Cortisone cream didn't do anything for the rash, but they did add some menthol for itch relief... Posted by Keebler (Member # 12673) on :
- canbravelyme,
To answer your questions,
The "Steroid Disaster" article (or one placed near it) explains why even topical steroid creams are not to be used by those with lyme.
Cortef IS okay, but only at a very particular LOW dose, for some but not for everyone -- see the links in that set. It's all there. See the books, the articles, that explains it all.
Still, Cortef's not the first thing to jump to and not everyone does okay with it. Some find it a very good helper, yet others have reported that they cannot tolerate it and do much worse.
Adrenal support with other methods is the best place to begin, with Cordyceps, Ashwagandha, Rhodiola, etc. If those don't help, with the guidance of one's LL doctor, then Cortef might be considered in the very LOW dose, no higher. -
Posted by Razzle (Member # 30398) on :
MS can also be improved with the CCSVI procedure.
Lyme symptoms won't completely go away with that procedure, but it may improve some for a time (temporary - the vessels will re-narrow on their own if Lyme is present).
Posted by canbravelyme (Member # 9785) on :
Thank you so much, Keebler! I've been rather gung-ho to get started on Cortef and T3...I'm going to be very conservative in my approach.
Best,
Posted by Lymetoo (Member # 743) on :
canbrave... I've been on cortef a long time (10 yrs) and I would like to get OFF of it. I tried once before and could not do it.
I think it is making it nearly impossible for me to get over this yeast issue. So .. one thing to consider before getting on it!!!
Posted by canbravelyme (Member # 9785) on :
Thanks, Tu! Yesterday went very well with the addition of considerable salt. If I can do this without having to take the Cortef, I will � thanks to you and Keebler Posted by VV (Member # 38828) on :
Salt is not a replacement for cortef.
Posted by tickled1 (Member # 14257) on :
As far as knowing for sure if it's Lyme or MS that's a tough one but I think it is becoming more well known that MS is most likely caused by an infectious agent. At least in the majority of cases.
That being said steroids are a bad idea but low dose naltrexone can really help. It has helped me. If you try it make sure you start very low and slow. By low I mean start at 1.5 mg. The first time I tried it a doctor started me at 4 and I couldn't do it and stopped for nearly 2 years.
New doctor started me at 1.5 and I've been on that for a long time and am about to go up but am waiting until after vacation. Clean diet can go a long way in relieving MS symptoms as well. Same goes for Lyme so either way gluten should be eliminated and sugar kept to a minimum. Organic as much as possible. No artificial dyes. No artificial sweeteners. Low or organic dairy.
When I was at my worst about 6 years ago I was told Lyme or MS. My spinal tap w/10 oligoclonal bands and MRI with brain lesions could very easily have been dx as MS but my neurologist at the time said she wanted to see how I responded to treatment for Lyme before dx'ing MS.
Although treatment didn't make me 100% there was improvement so I received the Lyme dx. Since then I've also tested positive for Cpn, Myco, EBV, HHV6 and a few other things. So, with the combnation of all my infections and the fact that my MRI and spinal tap results could have easily landed me an MS dx, to me it is clear that MS is caused by some infectious agent. At least in my case.
My recommendations are clean diet, low dose naltrexone, magnesium, active/methylated B vitamins and folate and Vitamin D.
Posted by VV (Member # 38828) on :
tickled,
What made you stop the LDN at first?
Do you get magnesium shots or IV?
Posted by tickled1 (Member # 14257) on :
I felt worse overall by starting at 4mg right off the bat. My dr. at the time insisted it would be fine and it was not. My current doctor said there's no way he would ever start me at such a high dose. I take Magnesium Glycinate orally.
Posted by Keebler (Member # 12673) on :
- LDN - Low Dose Naltrexone
This is not a comprehensive set of LDN links, for that, search the archives (and at the site for "The Better Health Guy" a lyme site). But this is a set that I started building for myself when I was considering it (and decided instead to employ Medical Mushrooms and their immune support):
Medical Mushrooms -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by tickled1:
Clean diet can go a long way in relieving MS symptoms as well. Same goes for Lyme so either way gluten should be eliminated and sugar kept to a minimum. Organic as much as possible. No artificial dyes. No artificial sweeteners. Low or organic dairy.
- Amen!
Posted by Keebler (Member # 12673) on :
- Ditto. Some explanations to go along with previous posters' suggestions below.
If a chronic stealth infection, even the best food plan in the world won't address infection. However, unless the best food plan is put into place, the chances for any treatment to work can be greatly diminished.
And, for symptoms that may not necessarily be infection-connected, it's important to realize that many symptoms can come from the items here. Aspartame is a neurotoxin.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posted by Larae30 (Member # 35220) on :
I have been gluten, sugar, caffeine and alcohol free for over a year and I juice every day etc...
I am interested in LDN, but what about if someone has highly elevated IgM immunoglobulins?
Posted by Tracy9 (Member # 7521) on :
You ask a really important question. I used to think absolutely everything was Lyme, now I know we could put ourselves in a lot of danger by not realizing that not everything is Lyme.
I have Myasthenia Gravis, a neuromuscular autoimmune disease that can be fatal without treatment. It causes severe muscle weakness and is progressive. My biggest symptom was trouble breathing. My muscles were too weak to effectively breathe. Twice now I have been hospitalized near the point of needing to be on a ventilator because I was near respiratory arrest, this is called "Myasthenic Crisis", and it is the part of the disease that can be fatal.
Had I not been diagnosed I would have died. I would have never dreamed my breathing difficulties were NOT Lyme (everyone said Babesia), or my choking issues were not Lyme, or my ever worsening vision was not Lyme, or my muscle weakness, heavy limbs, and extreme fatigue was not Lyme. It was my LLMD who happened to be a neurologist who diagnosed me with Myasthenia Gravis, knowing that having a bacterial infection for a long time can easily cause you to develop autoimmune diseases. He recognized my symptoms as characteristic of MG, diagnosed me, got me on treatment (IVIG and Mestinon) and truly saved my life.
Having had this happen to me, I now cringe a bit when we chalk absolutely everything up to Lyme. Yes we have Lyme, but we might have something else too, and it can be very dangerous to ignore that possibility.
I have now been on IVIG for 2 1/2 years. I go every other week, for two long, full days in a Cancer Center. If I so much as miss a week, I end up in the hospital with difficulty breathing. I just spent 9 days inpatient in January. I wouldn't wish it on anyone, but now I know what is Lyme and what isn't, and what I need to do to stay safe.
Posted by Keebler (Member # 12673) on :
- There is a huge difference between attributing everything to lyme and being certain that whichever doctors assess our symptoms are lyme literate (meaning all tick-borne infection literate, heavy metal literate, parasite literate)
so that they have that background and knowledge necessary for an educated and thorough assessment.
Without that knowledge, a proper assessment can't happen. It just can't.
With that knowledge, they are better able to look at the big picture, consider what is or is not - what may be or may not be - lyme or related. And, then, who else might be called in on the case.
On the flip side, as lyme "complex" causes so many issues, if a doctor in another specialty has no knowledge of it for a frame of reference, they will not be able to sort it all out.
In such a case, certain treatments or advice that can damage someone with lyme may be suggested (i.e. steroids, aerobic exercise, liver-toxic or ear-toxic drugs without support methods, etc.).
However, with a good background about lyme, treatment advice for other diagnoses can work FOR, not against, a patient who may also have lyme.
But, mostly, we just deserve doctors who have the best education so they know what they are looking at and what ramifications their advice will have . . . and if it will cover all the necessary bases without blasting anything else out of the water.
We just want the most educated doctors possible. And that just must include being lyme literate, tick-borne infection literate, heavy metal literate, parasite-literate, even porphyria-literate & "liver" literate. For a start, not for a finish.
Such a doctor would also have team of others in his professional circle. No one doctor can know everything all the time - and a good doctor knows who else to consult.
A good doctor has the desire to learn more - and know where to seek out true knowledge, from all places it resides. A good doctor will also trust the accounts of those who come seeking answers. -
[ 04-11-2013, 02:36 PM: Message edited by: Keebler ]
Posted by canbravelyme (Member # 9785) on :
Wow -- Keebler. You're absolutely right, you know.
Tracy's post brought up so many of my feelings about Dr. W.'s unjust death (he was killed by a drunk driver). Dr. W. (I assume) was the neurologist that Tracy referred to, who diagnosed her Myasthenia Gravis.
Here's a guy who got it all -- 1st time I went to see him, I think I was there 5 hours; he'd leave me in the room, go and see someone else, or have a snack, then come back. He kept me there until the diagnosis was finished, RATHER than until the appointment time was up -- finishing the job, just like you would if you were working at any other kind of job, you know?? He even asked me whether I could come back the following day, but I had to go back home.
One would think that was due to my overwhelming charm, but no -- before I went for my first appt., another board member warned me that the appt. would be LONG.
He just "got" it. Knew how to be a physician. Damn it.
[ 04-11-2013, 07:12 PM: Message edited by: canbravelyme ]
Posted by VV (Member # 38828) on :
Tracy,
Were you diagnosed with myasthenia gravis through a blood test for acetylcholine receptor antibodies?
Posted by nefferdun (Member # 20157) on :
I brought that old post up - Why do my Symptoms Explode when I take LDN - and explained what happened. It was not the LDN to blame. It was undiagnosed protomyxzoa.
LDN is a miracle.
Posted by lax mom (Member # 38743) on :
quote:Originally posted by Tracy9: Having had this happen to me, I now cringe a bit when we chalk absolutely everything up to Lyme. Yes we have Lyme, but we might have something else too, and it can be very dangerous to ignore that possibility.
Also, not everything is a herx. Had I stayed home and not gone to the hospital, when I thought I was having a bad flare, I wouldn't be here.
That is what is terrifying about this disease.
Posted by Keebler (Member # 12673) on :
- We just want the most educated doctors possible.
And that just must include being lyme literate, tick-borne infection literate, chronic "stealth" infection-literate, heavy metal literate, parasite-literate, even porphyria-literate - & "liver" & liver-support literate.
For a start, not for a finish.
Such a doctor would also have team of others in his professional circle. No one doctor can know everything all the time - and a good doctor knows who else to consult.
A good doctor has the desire to learn more - and know where to seek out true knowledge, from all places it resides. A good doctor will also trust the accounts of those who come seeking answers. -
[ 04-11-2013, 05:34 PM: Message edited by: Keebler ]
Posted by Tracy9 (Member # 7521) on :
You are absolutely right, Keebler. It is a really tough spot to be in. Ironically enough, what I encounter now more than ANYTHING is specialists telling me my non Lyme issues are all "just my Chronic Lyme." I know that is the oddest thing ever, but it's true. They see me as too complicated and frankly would rather just pass me back to the Lyme specialist. The first neurologist I saw for the MG after Dr. W diagnosed me absolutely tried to pass me off and chalk it all up to chronic lyme and coinfections.
I just saw one at Yale, Yale! who tried to do the same thing.
Yes, I was diagnosed by the blood test. I've had four positive MG bloodtests. I respond really well to IVIG and I am maintained on it every two weeks.
There is no one like Dr. W. He was a Lyme doc and a neurologist, he was brilliant, and he looked for everything. I am so lucky to have had him diagnose me because now I am getting the ongoing treatment I needed.
And yes, it is pretty terrifying. Lyme causes so much that it really is hard to know if we ever have anything else going on. I've been trying to figure this out with my teenage son for years now. I don't know what to do. Does he have Lyme? Does he have MS? Does he have PANDAS? Every provider passes him off to the next one, I'm so sick of dragging him around to doctors....tomorrow we see a new Lyme doctor.
Posted by Lymetoo (Member # 743) on :
Tracy .. That is so shocking that even Yale is now trying to pass off non-Lyme issues as LYME! How crazy is that??!
What a nutty medical world we live in!
Posted by tickled1 (Member # 14257) on :
I'm finding that I now regret telling some doctors about my chronic Lyme b/c they do the same to me. Chalk everything up to chronic lyme.
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