posted
Hello all, I havent been on here in years since I concentrated on just living my life and no longer chasing some new miraculous book, diet, coffee oil crap that will cure me of all of my ailments.
But in 2016, I was diagnosed with MCI( midl cognitive impairment) by one doctor and dementia by another. I spoke to both my Lyme specialists who treated me for about 7 years and they said that many of their patients end up with dementia due to the bug crossing the blood brain barrier.
I have been tested for years and the disease steadily progresses but what I have come to see is that I have similar symptoms to ALS now, the I didnt have before.
It all started with a pain in the neck...and I'm not talking about my wife....and has now come down to seeing an ALS specialist based upon the recommendation of the neck guy. Has anyone ever had such issues and where are you at now in this journey?
**edited for easier reading**
[ 12-16-2019, 07:55 PM: Message edited by: Lymetoo ]
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
ALS is a cause unknown diagnoses. It only makes sense to treat the "unknown" cause.
I believe it's time for you to chase your path to wellness. Find the true root cause of your symptoms.
It's never just Lyme. It's many other vector borne diseases that weren't properly treated. It's a huge load of viruses that also have wrecked havoc on your body. New viruses or reactivated viruses.
It's also Candida, Fungus and mold that have invaded your body over the year while chronically ill.
It's an immune system completely dysfunctional. ALS doc will take you down a path of pharma meds that will further play havoc on your body.
Find a doctor that is educated about what all the above mentioned conditions and knows how to clean up your terrain. Most likely a Functional/Alternative doctor.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I cannot read your post as the text is just too tight, but where the question of ALS, Parkinson's or Alzheimer's is concerned for anyone who does or might have lyme,
Pam's reply is essential, correct, and potentially life saving. I whole hearted agree with each point.
You do require a very good, properly lyme literate doctor who is also tops in all the tick-borne infections. Someone who has been emersed in the research and conferences such as those from ILADS from the last couple decades..
One who is not simply will not do. Not at all. Because, as Pam states, not just lyme but the infections that go with ticks also much be considered.
and then research the work of the doctor in that documentary who was MISdiagnosed with ALS, later properly dx with lyme and babesia - and treated - to a good level of recovery, indeed.
Also scour the archives here at LymeNet for past thread with ALS, Parkinson's, and Alzheimer's in the subject titles.
As Lyme disease spreads, young mom's death raises questions
A. Pawlowski - NBC Today - March 1, 2017
Excerpt:
. . . Claire Diss — a British woman whose family says her doctors thought she was suffering from ALS (amyotrophic lateral sclerosis) before she was diagnosed with Lyme disease — passed away on February 13. She was 35. . .
[Poster's note: now, then, refer back to Dr. M in the documentary menition previously. The difference? His "ALS" was not that at all and when lyme and babesia were dx, and treated, he experienced a good level of recovery.
His case has not been the only one. I've been watching all this for over 23 years and there have been several articles about ALS being misdiagnosed and that lyme was the root cause for some who then recovered with proper treatment for lyme & other tick-borne infections, etc ]
LYMENET ARCHIVES Search both medical and general forums with key terms in the subject bar.
--
KNOW YOUR GLUCOSE LEVELS -
And -- if you do not yet have a home glucose monitor, IMO, it is vital to get one and start testing your blood sugar after eating anything to see what certain foods / beverages do to your blood glucose.
Getting a HOMA-IR test is also really important.
I will be back with that detail. In the meantime, start with search at YouTube for: "Dr. Ken Berry" glucose
It's not that I think glucose / insulin issues might be trouble instead of lyme that is, indeed, with you . . . but in addition to chronic stealth infection.
Alzheimer's does have some scientific research that points toward lyme as one possible connection / association / part of the underlying triggering mecanism - perhaps, or likely - but in addition,
Alzheimer's is also referred to as Type 3 Diabetes. One expert researcher on this connnectoin: Amy Berger. Cross search her work & video presentations for the severity of symptoms might be prevented, or even reversed.
And: processed vegetable and seed oils can also be part of a cause, along with lyme, etc. I will be back later with links.
Where there are multiple factors, improvement in one aspect can often bring a good amount of help. And the various aspects can rotate in the importance of monitoring / adjusting required. But all need to be considered.
Good luck. Take care. This likely has a decent chance of improvement, I think. I really do, when you look to the underlying connections and the ways to approach all that which is not at all in line with thinking of the typical ways ALS is treated by typical medical practices.
Be especially aware that some of the drugs used for the diagnoses you mention can be very toxic and not address the root causes. These can impair your body. So be very careful. -
[ 12-16-2019, 01:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Dr. Paul Mason - 'How LECTINS impact your health - from obesity to autoimmune disease'
43-minute presentation with excellent slides
[poster's note: - the illustration of how lectins can travel on the vagus nerve and into the brain to cause damage that has been associated with Parkinson's / neurological movement disorders . . . is striking.
Myself, my neurological issues have improved a lot since I cut drastically my lectin intake]
OXALATES, too, can be an issue, but won't go into that right now. Just note as you move through all this that oxalates in certain plants / fruits can cause tissue & neurological damage, too. Be sure to avoid spinach and almonds, for instance, for they are sky high in oxalates.
The LYME connection to Alzheimer's ? Already mentioned:
Documentary "Under Our Skin" features the work of Alan B. MacDonald. His website:
posted
Thank you both very much- but I have been there,
done that and did not get any better- fatigue and
memory have always been my biggest complaint. I
have seen 2 specialists n two different states-one
being the adviser to President Bush when he got
Lyme. when i asked one of them about dementia, she
told me that many chronic Lymies end up with
dementia. I have had Lyme for the past 21 years-
I've gone thru the wide gammut of testing,
antibiotics, probiotics and the such- besides
spending hundreds of dollars travelling to these
experts and all the medical bills until I'm broke.
I have experienced praically the entire list of
symptoms to the point that I dont know what is it
anymore to be healthy- I have even lost myself
along the way-I dont know who I am anymore. As of
late, quite a few symptoms have stated out of the
blue which obviously concern me. Afer having a CT s
can of my neck and spine, ater having months of
pain, the dr told me it came back clean- O cant
have an MRI because I have a pacemaker. The dr
concluded that something serious is going on
neurologically and I need to see a neurologist as soon as possible- I have already gone thru a lot of
tests since Ive been treating the dementia.
Needless, to say, Im very scared but cant keep
chasing miracles when i no longer have any money
ope anymore- I'm done fighting this. I'm so tired
and just want to live as best I can-treating the
symptoms.and have given up on Lyme- I am not
hoepelss but i have no hope. Im tired of being
Lyme- I want to be me and just go about my life as
best as possible- treating the symptoms. I have so
many other physical and emotional issues because of
Lyme that even though I dont have an MD after my
name, ALS sunds like it could be a strong
possiblilty. I havent read all the researdch but I
did read that out of a certin number of ALS
patients, all had Lyme. Now that doesnt meant the
oppostie that all Lymies have ALS. I'm trying to
see the specialist in ALS and if she feels I dont
have ALS than I'll move on to someone else.
Thank you for the advice- I will consider it.
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the nutrition / tissue repair links posted above,
The writings of Stephen H. Buhner might be of good help to you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I understand your frustration jo3.
I recently saw a Neuro Optometrist, waited 6 months for an appointment. I sought her out because she specializes in MS patients. The minute she heard TBI's, she referred me to another optometrist. The reality is only LLMD'S can figure out what's happening in our bodies.
Of coarse we can take matters into our own hands from what we've learned, experienced and researched along the way.
The latest research shows ALS/Alzheminers are caused by biofilms, made up of all kinds of pathogens.
posted
Pam Weintraub wrote about Dr David Martz (now retired so we can say his name here) in her book, "Cure Unknown: Inside the Lyme Epidemic." He found out his ALS was Lyme, he treated with antibiotics and got better.
He was a featured speaker at a LymeDisease.org conference in the Bay Area one year and it was very moving listening to him.
Upshot of this post - I and many others think ALS is actually Lyme disease.
I hear you re being tired of all this, but we each are unique, with unique strains and unique biological responses and each of us needs to find out how we personally can respond in a beneficial way.
You say fatigue and memory bother you. Fatigue can be caused by not having enough magnesium to fuel our energy, so we usually find out what magnesium supplement we can tolerate. I also recall I lived on flower pollen (not collected from bees) when I first became run-down from undiagnosed Lyme.
My sense of presence returned after finding out via bloodtesting that I was hypothyroid and going on Armour thyroid, a natural form of T3 and T4. So if you have that issue going on of not feeling that present, you can have your doctor do thorough thyroid bloodtesting.
I just want to encourage you to continue to explore remedies that might help you feel better.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Robin, you and I keep beating that Thyroid Disease drum. I'm not sure folks on here are getting the message. Lyme & co is known to attack the Thyroid and the very key thyroid hormones needed.
I cannot tell you Lyme folks how important it is to analysis your thyroid test results and know the thyroid world as much as you know the Lyme world. I will state testing is NOT a TSH test only.
I lived in what I thought was never ending Lyme he!! world until I got educated on thyroid and realized for over 30 years I was on the wrong thyroid medicine for me. I had spent years on Synthroid/Levothyroxine.
T3 hormone is the energy hormone. How many of you have energy? The above T4 meds are suppose to convert to the T3 energy hormone. In Lyme world we are not coverting to T3.
So it's never ending fatigue, insomnia, joint pains, brain fog etc etc. 3pm-4pm crash. I'm attaching this list. Print it off and see how many checks you have.
Am I still fighting Lyme & co. Yes they like to pop their head up every once in a while? But I now have the ability to knock them out very quickly. They are minor annoyances now.
I'm currently on Nature Throid thyroid meds and slowly working up my dosage.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Thank you for your replies. Yes, right now my thryoid is out of whack because I lost my PCP and am not on the right dose.
For my body, the way I work, as Robin said, yes, I will become very tired which will cause more memory loss and brain fog.
I am concerned about all the other new symptoms-the tripping and falling, the dropping things, slurring speech, the whole 9 yards that had never happened before. Thats the scary part-regardless of getting my thyroid back on track- this stuff never happened to me.
I'll see a specialist tomorrow and she'll order the EMGs and stuff like that and we'll take it from there. Prayers appreciated.
(breaking up the paragraph for easier reading for many here)
[ 12-29-2019, 03:18 PM: Message edited by: Robin123 ]
Posts: 247 | From san antonio,tx | Registered: Oct 2004
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
Is it possible for Lyme disease to be misdiagnosed as amyotrophic lateral sclerosis (ALS)? Are there similarities in symptoms between these two diseases?
The question of a relationship between Lyme Disease and ALS first received significant academic attention when Dr. John Halperin who was then a neurologist at Stony Brook conducted a study in which he compared the frequency of blood test positivity to the agent of Lyme disease among patients with ALS to community controls.
The results indicated a higher percentage of the ALS patients were seropositive for Lyme Disease.
Since then, there have been isolated case reports both in the media and one or two in the academic literature indicating that a patient had been misdiagnosed with an ALS-like illness only later to be re-diagnosed and treated for Lyme disease with good clinical response.
Although we suspect that there may be rare individuals who have symptoms similar to ALS but actually have proximal motor neuropathy caused by Lyme disease, the vast majority of patients with ALS are not thought to have Lyme disease as the cause of their serious disease.
Clinical trials have been underway using antibiotics for ALS (such as minocycline or ceftriaxone) not because there is belief that ALS is caused by a microbe but because these antimicrobial agents have other properties as well, such as decreasing inflammation or decreasing glutamatergic excitotoxicity.
The studies examining intravenous ceftriaxone as a treatment for ALS were not successful.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
Deeper Connections Between Lyme Disease and Other Illnesses Called the “great imitator,” Lyme disease can present a variety of symptoms that mimic a wide range of illnesses, including chronic fatigue syndrome, fibromyalgia, ALS, Alzheimer’s disease, depression, insomnia, and autoimmune disorders such as RA and Multiple Sclerosis (MS).
ALS
In some cases, the similarity of symptoms between Lyme disease and certain other illnesses has raised questions about possible causal connections between illnesses. Some people, for instance, question whether Lyme disease could actually cause ALS, or Lou Gehrig’s disease, which is a progressive and fatal neurological disease.
The consensus among most medical scientists is that it is unlikely—largely because it would be highly unusual for a bacterial infection such as B. burgdorferi to cause both upper and lower motor neuron symptoms as well as progressive motor weakness and paralysis.7
The connection between these two illnesses is most strongly rooted in the similarity of their early symptoms, which can include fatigue, muscle weakness, and muscle twitches. This overlap can lead to misdiagnosis, but various diagnostic tests can help doctors differentiate these two diseases.
For example, although there are no specific tests to determine if someone has ALS, clinical and neurological exams coupled with various diagnostic tests—such as blood and urine tests, spinal tap, MRI, or muscle or nerve biopsy—can help doctors diagnose ALS. If Lyme disease is suspected, doctors can also use specific lab tests for confirmation.
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
Burakgazi AZ1. Author information Neuroscience Section, Department of Medicine, Virginia Tech Carilion School of Medicine, Roanoke, VA, USA.
Abstract IMPORTANCE: To describe a case of predominantly motor polyradiculopathy secondary to Lyme disease that can mimic motor neuron disease and has been rarely reported.
OBSERVATIONS: A 64-year-old man presented with a 1-month history of rapidly progressive weakness involving bulbar, upper limb and lower limb muscles. The physical examination showed widespread weakness, atrophy, fasciculation, and brisk reflexes. The initial electrodiagnostic test showed widespread active and chronic denervation findings.
The initial physical and electrodiagnostic findings were suggestive of Amyotrophic Lateral Sclerosis (ALS). However, blood serology indicated possible Lyme disease. Thus, the patient was treated with doxycycline. The clinical and electrodiagnostic findings were resolved with the treatment.
CONCLUSION AND RELEVANCE: The diagnosis of Lyme disease can be very challenging and it can mimic other neurological disorders such as ALS or Guillain-Barre syndrome (GBS). Careful and detailed examination and investigation are required to confirm the diagnosis and to prevent misleading inaccurate diagnoses.
KEYWORDS: ALS; Lyme disease; motor polyradiculopathy
PMID: 24397499 DOI: 10.3109/00207454.2013.879582 [Indexed for MEDLINE]
Posts: 4563 | From TX | Registered: Sep 2002
| IP: Logged |
I am concerned about all the other new symptoms-the tripping and falling, the dropping things, slurring speech, the whole 9 yards that had never happened before. Thats the scary part-regardless of getting my thyroid back on track- this stuff never happened to me.
Jo - these are all normal Lyme symptoms. It means that you need to get treated for Lyme and then these symptoms will go down.
Posts: 13116 | From San Francisco | Registered: May 2006
| 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!
Printer-friendly view of this topic