posted
HELP: I am freaking out. Was referred to specialist at Baylor who said I have psychogenic movement disorder.
He was not impressed by my IGENEX testing which was equivocal but this was done after 45 days of antibiotics and treatment with high dose steroids.
I also tested positive for black mold, gliotoxin and MARCONS. He thinks that is nonsense. Did not want to know about elevated inflammation markers etc.
Now I am all in my head thinking that I am doing this to myself. Questioned my stress level, depression etc.
My symptoms of course come and go but have been told by others that this is normal with Lyme. Feeling pretty hopeless and scared.
Posts: 86 | From LA | Registered: Jul 2016
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randibear
Honored Contributor (10K+ posts)
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posted
high dose steroids? eeeekkkk
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I know I was first treated by a neurologist who at least put me on the right antibiotics but then because I was not better did high dose steroids for 5 days
Posts: 86 | From LA | Registered: Jul 2016
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posted
That is terrible... neuros have NO CLUE about Lyme .. hence the steroids.
I would find a new doctor. ... like an LLMD!!
I have no clue what your diagnosis is supposed to mean. Is it just a label for your movement?
EDITING to add:
OH .. so it's all in your head? GREAT.
"Psychogenic movement disorders (also called functional or conversion disorders) are characterized by unwanted movements, such as spasms, shaking or jerks involving any part of the face, neck, trunk or limbs. In addition some patients may have problems with their speech (slurred, soft voice, gibberish, foreign accent), bizarre gait or difficulties with their balance that are caused by underlying stress or some psychological condition.
A variety of blood, imaging and other tests are usually normal and do not reveal any physical (organic) cause that could explain these motor abnormalities."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
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posted
in other words "psychosomatic".
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- That same (mis)diagnosis is given by ignorant doctors to most with lyme - so I'll cut right to the chase. Do not so easily give up your brain & personal power and hand it over to someone who is not properly educated in lyme / TBD.
Just don't. Find a proper ILADS educated LLMD / LL ND and if you require additional doctors, a real LLMD will know who to suggest.
FWIW, I've been devastated so many times by the diagnosis you received. Then I learned what was really going on and I will never go to an ignorant doctor again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Once the politics of lyme become clearer to you, and the diagnositics involved, you will see the trick that most doctors play on those with lyme, calling them hypochondriacs, really.
Stand strong in the knowledge that is there to learn through ILADS, etc.
Watch the documentaries: UNDER OUR SKIN & EMERGENCE. You will see how others have been through the same bad treatment as you. And that's why only lyme literate doctors will do. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Global Lyme Alliance -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- "Required" reading for anyone who really wants to understand. Plan something refreshing for yourself after pouring through this. Take it in steps, it is a rough format so you may want to copy, paste and then change font and add some space breaks for your "study" copy. http://cassia.org/essay.htm and
This article is essential reading to gain an understanding of what it's like to HAVE lyme. This can be frightening, yet it is informative -- and then empowering so that symptoms and patterns are not so scary.
And, with the best ILADS educated LLMD or LL ND we can secure (and if not, the best articles and books by the best of the bunch) . . . we can be somewhat calm knowing that all the bases are covered and there is a chance for success. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
Includes link discussing safe, low dose Cortef for adrenal support.
While steroids may have caused you some major trouble, if you can get to a good LLMD, there is still hope. Forty-five days of treatment is so very little.
Good luck. Others have been where you are and have found their way - over time - to improvement. But you won't find it by going to a doctor who is not up to speed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Movement disorders are very common with lyme. A good LLMD or LL ND can help with direct anti-lyme / anti-TBD (tick borne disease) treatment.
Also consider that many with lyme are very deficient in magnesium. When magnesium stores are improvement, some of the movement disorder issues can subside.
Topic: MAGNESIUM - Informational Links -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You posted on another thread a month ago:
" . . . treated for 45 days with antibiotics and now on numerous homeopathic medications to treat inflammation and immune system support" (end quote)
45 days is not long enough for direct treatment. Note that in the film "UNDER OUR SKIN" it took the park ranger 3 years to feel better and 4 to feel good again.
Combination treatment is a must. Lyme cannot be treated with just one kind of Rx. And coinfections must be considered, too.
I know that sounds like a long time - but I assure you that you are not being properly served at this time.
TF posts below of much progress in a year or so once the right LLMD had been secured.
Controversy continues to fuel the "Lyme War" - Clinical Advisor, 2007
[section] Treatment dilemmas . . .
. . . Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . .
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.]
Updated by SF: 06 May 2016 -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- You posted on another thread a month ago:
" . . . treated for 45 days with antibiotics and now on numerous homeopathic medications to treat inflammation and immune system support" (end quote)
Be certain whomever is treating you has completed the ILADS Physician Training program. Indeed, homeopathics can be of help but if you are only addressing immune and inflammation issues at this time, the underlying causes are being ignored.
This is a lot to sort through yet such valuable detail in this set:
When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever - not if there is inflammation in the spine with active infection. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You also talk about mold issues. Mold, alone even without lyme can really mess up the body.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the 2011 & 2012 annual ILADS conferences.)
TF has posted (2016) regarding MOLD suggestions:
Here are 2 sets of notes that I took from lyme conferences. The 2 speakers are mold experts. Perhaps they will give you some leads. I hope so.
Many good links here - where any links are expired, just google the title / name to find the updated link. -
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Keebler
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posted
- Do all you can to comfort yourself, be kind and gentle as you read through all this - it will take time. The thing is that there is hope. There is no one way to proceed and budget and accessibility certain can complicate.
I assure you that it's not your own brain / psyche "doing this to yourself" but the disease process.
And I urge to stand strong in your mental health and never let any doctor, especially one ignorant of TBD (tick borne disease) tell you your mind is off kilter and manufacturing symtpoms . . .
yet, standing strong in your own mental health also won't mean depression or anxiety won't be in the symptom mix. These are neurological symptoms, though, that affect our emotions. And, of course emotions will run the full range, too.
The point is that when you recognize these as part of the deal and find ways to manage while the underlying causes are addressed - I hope it will be easier.
There is hope to get better, though. Stand tall in your mental health and never let any doctor question that again. Take gentle loving care.
For help with emotions, etc. if possible a
LL therapist / counselor might be of help. Talk to those at your closest lyme support groups and the closed LLMD office staff for suggestions.
I am very loud about this, though, unless really LL and has experience with lyme patients, the typical therapist can only understand so much and can cause harm by what they don't know.
Whomever you work with now for the homeopathics, it concerns me greatly that they let you walk into that other doctor's office knowing they were not LL and knowing the kind of treatment you might likely receive. Had they been LL, they would have been able to prevent that mishap.
They may well mean well but I hope they can expand their knowledge base to - in time - better serve complex cases such as yours.
If your homeopathic practitioner is not the one who referred you to Baylor, whoever did is one you can never trust again, IMO. First, because they did not know lyme and mold issues - and steroid use - could cause all the problems . . .
but also they did not understand what throwing you to a lyme / mold ignorant doctor could do.
Indeed, there are things besides lyme / mold but if a doctor does not know about all that, they cannot - simply cannot - sort out what is going on with it or along with it.
It's clear that you do not have LLMD or LL doctor of any kind and I sure hope that become possible.
In the meantime, I suggest starting with books by Stephen Harrod Buhner if you are on your own - or until you find a LL doctor.
Take care.
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Keebler
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posted
- While continuing immune support (not immune stimulation, though as that can be too strong) . . .
and continuing anti-inflammation measures, of help might also be avoiding certain food or food-like substances. for instance, aspartame can cause some movement disorders (sure did for me) . . . as can gluten in wheat, rye, barley, etc.
While you sort out the avenue to take regarding lyme / TBD . . . mold, etc. . . .
you might get really lucky and find much improvement with some changes to your diet. Do not try to loose weight, though. Just go for healthy and flavorful foods as your body needs them.
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
GMO foods that destroy the GI Tract; Gluten; Dairy. -
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Jordana
Frequent Contributor (1K+ posts)
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posted
As a person who is always looking for the companion diagnosis from conventional medicine for chronic Lyme -- you just gotta ignore a lot of what they say unless there is something they can do to help.
Neurologists are fantastic at naming problems without having any clue at all what to do about them. Like regular medicine, which offers anitbiotics, steroids and benzodiazepines; neurology can give you steroids, gabapentin, and benzodiazepines.
Regardless of whatever it is they're calling it, the cause is chronic Lyme. They are not going to find, connect or treat the Lyme. If your movement disorder is in your head, it is still caused by Lyme. So you know that, regardless whether some of your symptoms are "psychogenic" or not.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
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posted
- Do not for one second think your symptoms are psychogenic. Not. For. One. Second.
They cannot say it's psychogenic if they have not even considered the pathological basis, the toxicity of borrelia infection that can cause such symptoms . . . or nutrient deficiency . . . neurological and vestibular (inner ear / balance) dysfunctions that go with lyme, too.
Besides, I'm so tired of doctors saying "we can't see / find anything so, therefore, you have to be causing this yourself."
They cannot see / find because they are uneducated in all the science of tick-borne and chronic stealth infections.
Or the ramifications of MOLD exposure. It's not what they "do" or care about.
And, they also usually just don't want to look deeper or learn more.
Their diagnostics are impaired; their judgment is flawed. And it's ridiculous to think we know all there is about the human body / brain. Just last year, there were parts of the brain / brain functions that were discovered that had previously just been literally - in the dark. -
[ 01-26-2017, 09:36 PM: Message edited by: Keebler ]
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Keebler
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New brain map identifies 97 previously unknown regions
By Susan Scutti, CNN - July 20, 2016 =
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Keebler
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posted
- Along with detail in above posts, it is also vital to work with your body. If possible you might seek out a lyme literate
FELDENKRAIS movement therapist to help you assess your erogonomics / body use / posture, etc. and also key movement exercises.
But they must understand lyme. About 3/4 into the "How to Find a LL ND" thread (in set above), there is a post about success of Feldenkrais movement therapy for someone with lyme. -
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Keebler
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posted
- In addition to assessing your living quarters / auto, etc. in line with Lisa Nagy's website above / mold issues . . .
be sure to do an air flush of your home twice a day.
check any gas lines and if you have gas stove, before turning on and turning off the burners, turn on the exhaust fan.
Also check all Rx you take for side effects. Some can cause movement disorders and also affect QT heart rhythm which, in turn, can cause short syncope episodes that could be confused with a movement disorder (was for me).
and check all Rx that might also lower magnesium levels.
Rx that interfere with vestibular function can also look like a movement disorder. Rx that is OTOTOXIC is highly suspect in this matter.
Get book by Neil G. Bauman OTOTOXIC DRUGS. You cannot find all this on the web.
Liver support may help for those Rx that are essential and affect the ears; for non-essential ototoxic Rx, a good LL ND can suggest safer approaches. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: - Do not for one second think your symptoms are psychogenic. Not. For. One. Second.
They cannot say it's psychogenic if they have not even considered the pathological basis, the toxicity of borrelia infection that can cause such symptoms . . . or nutrient deficiency . . . neurological and vestibular (inner ear / balance) dysfunctions that go with lyme, too.
Besides, I'm so tired of doctors saying "we can't see / find anything so, therefore, you have to be causing this yourself."
They cannot see / find because they are uneducated in all the science of tick-borne and chronic stealth infections.
Or the ramifications of MOLD exposure. It's not what they "do" or care about.
And, they also usually just don't want to look deeper or learn more.
Their diagnostics are impaired; their judgment is flawed. And it's ridiculous to think we know all there is about the human body / brain. Just last year, there were parts of the brain / brain functions that were discovered that had previously just been literally - in the dark. -
-
For sure.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
They gave my sister in law a dx of spontaneous vomiting syndrom with no kbown cause ...ridiculou . ..consider the dna connexion test if you need a positive result to treat
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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My son had involuntary twitching (Myoclonus), could not stand up straight or bend over at different times. Lyme Disease and co-infections which come with it caused this and affected his immune system, not the "all in his head" nonsense ignorant non-Lyme doctors tend to label patients with!
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are. At least half of all Lyme patients travel out of state for their care.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
This was recently posted for another person inquiring about doctors who treat mold, and I thought it was important information you should have about mold and Lyme:
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or find local FM stations in your area by putting in your zip code in this link:
posted
Benadryl and Nyquil and other medications with the same active ingredient can cause tremors.
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