I'm really puzzled about this. I've had all kinds of imaging; of my spine, my cervical spine, my brain, tons of bloodwork -- pretty much everything possible has been tested including an ultrasound of my carotid arteries.
I have no muscle wasting, no rashes, no lesions of the brain or spinal cord, no obvious serological problems; my liver is fine, my kidneys are fine, my lungs are fine;
I got an upper and lower GI and it was normal except for some gastritis and some irritation in my esophagus.
I have thyroid nodules but all my hormones and catecholamines are normal. My IGG and IGM are normal.
NORMAL. Everything. Including my emg which showed no demyelination or nerve damage for the most part, and my neuro exams are all completely normal.
So if I'm twitching and shaking and cant sit up for a long time and my jaw aches and my upper body wobbles, why is there no evidence at all of this? Why was my head vibrating for a month?
Why do I have double vision and totally NORMAL neuro-opthalmic exam?
I understand Lyme affects the peripheral nervous system but how can symptoms that are this scary and debilitating be totally invisible? Does anyone know?
(breaking up the post for easier reading for many here)
[ 01-02-2017, 07:24 AM: Message edited by: Robin123 ]
Posted by SickSam (Member # 45330) on :
I've come to a few conclusions about this (no hard evidence though).
1) Imaging isn't that great. Even when there are serious normal-people issues (like constructive pericarditis), imaging just can't always see it.
Even when images are abnormal, sometimes it's so hard to see that multiple radiologists miss it. I read about a guy with a compressed pituitary gland who had numerous MRIs over several years.
No one ever saw the problem. He learned how to read MRIs himself and found the problem, then had surgery to correct it.
2) Our problems are widespread and microscopic, rather than concentrated and macroscopic. If all the damage were in one area and not spread everywhere, I bet they could find it.
Or if they were to look at a nerve under a microscope, maybe they'd see it (like a skin punch biopsy).
3) Our bodies are just too complex for us to understand. I suppose only God really knows what goes on in there.
I share your frustration big time, but ive given up on testing. My dad just had an MRI on his back, and had back surgery very soon afterwards because of the results. And I'm like "why can't anyone find my damage???"
Honestly, I've decided God has protected my by hiding the damage from docs. If conventional docs saw what was wrong, I'm sure they'd give me some horrible treatment that would just make Lyme a lot worse.
Anyway, that's some of my theories. May or may not be right though.
(breaking up the post for easier reading for many here)
[ 01-02-2017, 07:25 AM: Message edited by: Robin123 ]
Posted by Tincup (Member # 5829) on :
You should, in my opinion, start listening to your body. For example...
If a frog were on the floor wiggling, shaking and doing the hokey pokey like you are, you could tell it was having a problem.
It doesn't need to be confirmed or measured by tests.
The key would be to get that frog out of the polluted water it is living in so it can heal and get better.
I'm afraid until they make a test that can determine how much stuff you are putting in your body and measure the level of toxins being created, your stuck with that predicament.
Frog face.
Posted by Bartenderbonnie (Member # 49177) on :
This is evidence.
Clinical evidence. The symptoms presented at the time of your doctor s appointment.
I ve stumbled into my appointments crying in pain and holding onto walls only to be told there s no reason why I can't return to work as long as I don't lift over 20 lbs. What a joke.
My very first symptom was my face was totally numb. That is a clinical symptom of Lyme. Good enough for me understand but not 19 doctors.
Spinal cord issues are difficult to diagnosis, even with stupid MRI s. It even says on CDC website that borrelia sometimes evades spinal cord taps.
I really feel your pain and frustration.
I stopped all my meds today, feel horrible. Heart issues now. Refuse to go to E.R. because of the waste and abuse of a summertime visit when I lost use of my legs. Was diagnosised with traverse mylagia and sent home to rot.
I m resting comforably in my own warm bed and if God is a merciful God, he ll take me while I m sleeping.
Doesn't mean I m giving up, only that it will be on my own terms.
Posted by bluelyme (Member # 47170) on :
My emg was dirty but they read it normal ,they lie to refuse treatment .....get your results and interprete them yourself ..or ask new llmd to ...
iv magnesium and iv phosphatylecholine with rocephin stopped my twitching with help from venom ,biotin ,lions mane and high dose efa .
.protect your nerves, livedo reticulits and ..muscle wasting happened before the twitching for me ...
please empower yourself jordana .stop trusting a broken medical system and others with your life and well being ...
if they fail i get to be mad at "them, if i choose its in my hands.they including llmds dont give a **** either which way
(breaking up the post for easier reading for many here)
[ 01-02-2017, 07:26 AM: Message edited by: Robin123 ]
Posted by Jordana (Member # 45305) on :
No no, it's not that -- it's that...well, there is conventional advice about what to do about chronic Lyme.
A long time ago what the first Lyme researchers decided was that PTLDS or whatever they're calling it now should be treated "symptomatically" - in other words, find the complication and treat THAT since the infection is untreatable.
This applies to all kinds of conditions that no one has found a cause for, like "syndrome x"; diabetes, thyroid disease, cancer, heart disease, etc. You treat the symptom, not the cause.
Fine, I say. I'll take that. I'll keep treating my Lyme but I wouldn't mind some medical help with the symptoms.
But there is no identifiable syndrome, or problem, or abnormality that anyone can find, so -- these things happening to me are...normal?
Can't be right. It just makes no sense. If there is something wrong with me someone should be able to find some abnormality somewhere.
My neurologist told me that anyone who is treating longterm for QUOTE "Chronic Lyme" is misdiagnosed; and that there was some other underlying condition or disease that was causing long term debility.
So I've been trying to find that thing that Modern Medicine would decide I have. Two years of this and no luck with that at all. It's mystifying. I have nothing.
I want to know where the heck it's all coming from. My brain? My spine? My muscles? You know? What is happening? It drives me crazy.
(breaking up the post for easier reading for many here)
[ 01-02-2017, 07:27 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
I had normal neuro-opthalmology testing and yet my eyes were screwed up - I think it's because the bacteria live in our tissues and inflame them, and they're not measuring that.
At this point in time, they are literally not measuring the entities that are zapping us nor measuring the damage they do in us. I think that is the answer to your question!
They can see reduced blood flow in SPECT scans and bloodflow increase after successful treatment.
The bacteria can get into ALL our tissues, so there is no one answer to your questions, Jordana. And they mess up the physiologies of the tissues so they don't work right.
When I started drinking mangosteen juice, all Lyme eye symptoms from over 2 decades cleared up in 24 hours!!
So I say try and find the treatments that will dissipate your symptoms.
Treatment for Lyme means killing/deterring the organisms, detoxing and fortifying the body - all three of those areas, and we get to see what works for us.
I do well with anti-inflammatory supplements like mangosteen juice, turmeric, noni juice, grapeseed extract, but you will need to find yours.
Also clindamycin antibiotics worked to take my fibro symptoms of over two decades to zero in a week's time - not saying clinda is your med, just saying when you find treatment you respond to, it will work for you, and it's a search. At least that's my understanding of this mess!
One more thing - we fibro folks were in the dark before we heard about Lyme, so we were throwing anything at our bodies to see what would stick. And things did work - we were responding to various approaches.
I hear your frustration here. Are you saying you have never found anything that helps to reduce your symptoms? Are you working with a thoughtful, inquisitive LLMD to do this investigation of your options, both antibiotics and complementary care?
Posted by Robin123 (Member # 9197) on :
Also, when discussing, please remember to break up your posting into a couple lines at a time, as we have folks reading here who have a hard time with large blocks of text.
Posted by Phoiph (Member # 41238) on :
The body experiences "functional" changes before they become deeper "structural" changes.
Most traditional medical tests are designed to measure "structural" changes (although some do measure functional changes...think MRI vs. fMRI).
The traditional tests you've taken still show you're in the realm of "functional" changes. This is a fortunate thing, but it likely won't stay that way forever. It also doesn't tell you why you're having the symptoms you're having.
I have mentioned before, IMO you are experiencing a neuro-immune inflammatory flare, and this is why "chasing the bugs with drugs" and following traditional treatments has not helped you
(and you have mentioned that you are actually worse than a year ago). True, an infection may have initiated the storm, but IMO this is not your main problem now.
You do not want to cross the line from the functional to the structural. Don't let your fixation on "figuring it out" and proving things via way of the limited medical route rob you of precious time.
Be aware that this hyper-focus is an obsessive behavior that can be driven by your condition, and may ultimately betray you.
Listen to bluelyme's comments!
Do not give up, but be willing to give up what doesn't serve you.
My offer to help you still stands, just PM me if and when you've had enough.
(breaking up some of the post for easier reading for many here)
[ 01-02-2017, 03:50 PM: Message edited by: Robin123 ]
Posted by Jordana (Member # 45305) on :
The "Lyme" of literature is different from the Lyme we seem to be experiencing though. In the literature, the Lyme is causing certain measurable effects that doctors can find, like brain lesions or gastroparesis. They can see the problem and then they go looking for the cause, which is Lyme.
The Lyme we seem to experience is totally different from what they write about.
Even this idea of functional versus structural change is theoretical -- obviously any functional change has a physical, structural cause even at the cellular level.
In fact, a lot of what was mysterious in medicine before is illuminated by the theory that most things are caused by stealth pathogens. H Pylori, for example, which started with some guy deciding people couldn't just get spontaneous ulcers for no reason.
There are causes and there are effects. But what really bugs me is that we're reading all this stuff every day about the wonders of medical technology
and how people with spinal cord injuries are now walking around -- and all these socalled "breakthroughs" in chronic illnesses,
and it seems to me that if they can't find a simple infection with all that crazy equipment lying around on the mothership then it's all a lie.
There is no modern medicine. Given what this entity says it can do we shouldn't have to be buying endless dubious tinctures on Amazon.
I can't tell you how annoyed this makes me.
It means we are ALL walking around in a fake reality.
Anyway Phoiph, I am ready. Regardless, of course I'm going to do hbot. I'm just wierded out by the technicalities, like when people start talking about APA and psi this or whatever.
If there's a plug and play option I'm all in.
(breaking up some of the post for easier reading here)
[ 01-02-2017, 03:51 PM: Message edited by: Robin123 ]
Posted by Bartenderbonnie (Member # 49177) on :
I have come to the conclusion, if I had to go through all of this again, I would have never mentioned the word Lyme to any doctor.
I saw gastro Doctor 3 months ago. My belly was so swollen I looked 7 months pregnant. Clearly, a yeast or candida problem.
But I opened my big mouth and said I think it's from Lyme disease and his demeanor changed. He said come back in 6 months.
Infectious doc told me to take my temperature twice a day and come back in 2 weeks after I told him it might be Lyme. Didn't even ordered blood labs !
E.R ran a western block when I mentioned Lyme. After it came back negative, they slammed a different diagnosis on me.
If you mention Lyme, they go out of their way to disprove it. Tell them, I honestly don't know what's wrong with me and maybe they would deep any little deeper and maybe find a small clue to work off of.
Whenever I google anything, I put the word scientific in search. There s all kinds of new research going on in testing and treatments.
But these are mostly trials done in research labs and unavailable to actual patients.
How about the 16 year old girl who developed an at home urine test for Lyme ? That's all well and good until she try's to get it approved with the C.DC.
The reason spinal cord victims can now walk on their own is because of all the money raised through foundations and federal grants. They also have state of the art facilities.
Unfortunately, our fate rests with the C.D.C. We need them to petition congress for funds and declare war on Lyme disease.
We have no where to go. Our doctors are treated like lepers, they are in hiding, treatment underground and cash only.
What the C.D.C has done with Lyme disease is criminal. It is against their OWN standard of care for sick patients.
We need lawyers, preferably fellow Lyme sufferers, to file class action lawsuits to change testing, train ALL doctors on treatment, get insurers on board, and secure more money for OUR state of the art treatment centers.
In my opinion, you would have your evidence if it wasn't for the C.D.C. blocking your every effort.
Posted by Jordana (Member # 45305) on :
I don't need evidence of Lyme disease. I just want evidence of *something.* All that testing won't identify Lyme but it should identify some sort of damage or irregularity, you know?
And if Something was identified, then we'd be able to try to address it.
From my experience, I'm convinced I actually scare the doctors now. They don't know what's wrong and probably think I have a serious neurodegenerative disorder they don't want to get anywhere near diagnosing. And the longer I rattle around without dying or getting better, the more likely they are to get sued.
Posted by Brussels (Member # 13480) on :
If you would like to get practical results - meaning, GOOD doctors treating you well with APPROPRIATE treatments - forget about testing with conventional MDs.
If they found loads of problems with you, and even if they found lyme disease or other co-infections, detox problems, ...
....cavitations in your mouth, heavy metals all over, whatever, what treatment would you expect these conventional doctors to give you?
2 weeks of doxy and told cured?
I gave up trying to deal with non-LLMDs long ago, and never regretted.
Even if all came positive, damage seen / proved, everything shown up in your brain, gut, joints, eye nerves, ....
.... heart valves, whatever you are expecting to see, a normal doctor cannot help us more than giving us something ridiculous as treatment.
Or s/he'll simply say: I don't know the cause. Result = NO treatment. Or incurable.
They will LABEL your problem with different names, diseases that anyway have no treatment except SYMPTOM relief (pain killers, anti inflammatory things, ...).
That is THE truth.
Maybe you would like to see evidence to prove to others that you are not imagining it all? Or to yourself? That is fine, of course.
One thing is right: they won't help you, even when all comes positive just because they do not know HOW!
Posted by Jordana (Member # 45305) on :
The whole time I've been sick I never worried about seeming crazy. Mostly I did testing for my own purposes, sort of running on my own theories and asking for advice from the smarter ones, like my neuro who is a smart smart lady who just does not believe in Lyme.
I wasn't insulted when she suggested somataform disorder ( all in my head) because this was all she knew. She sees people with ALS and advanced MS, the very very sick. After two years I was presenting nothing to treat, but she kept poking around.
I wasn't terribly upset when my regular doctor told me to "move on with my life." She actually talked a lot about "deconditioning" which was all SHE knew about chronic illness.
Since I know Lyme causes complications I was looking for those complications; problems in bloodwork and immunity and imaging and so on. I'll probably still keep doing it.
What bothers me is that I have these symptoms and no explanation as to what is actually happening. WHY am I having these shaking spells? How is my left side so weak? What is giving me ataxia?
Not that "Lyme" is giving me these things, but mechanically, what is causing this stuff to happen? There should be some way to understand it.
Like SickSam, who has all these heart symptoms, and no one can tell him what's happening to him. This makes no sense to me. It makes sense that medicine can't tell people why things are happening to them, you know, the cause of it. But it's stunning to me that they can't even tell you what is happening. I'm so puzzled by that.
Posted by Brussels (Member # 13480) on :
If medicine were science, like engineering, physics, chemistry, it would have more answers...
The human body is chemical, physical in many senses...
as it reacts to light, to sound, to electricity, to acupuncture, to emotions, to intention, to thoughts, to voltage, to frequencies....
It even reacts to parasites, bacteria, viruses that can even use our brains to control our wishes, behavior...
Only because hospitals have big and small machines to scan, hear, see inside you, cut you, it doesn't mean that they understand how a human body works, what makes it sick, what heals it.
Most doctors just know a bit of chemistry, biochemistry, some basics of how the body systems work MECHANICALLY (and just a tiny part of mechanics) and some of the chemistry in it, and that is all.
How do you expect them to understand what's going on in you?
Most even can't find Borrelia!
Most symptoms you describe are neuro symptoms. It's not simply 'mechanics', but electric.
If they can't even find PHYSICAL evidence of Borrelia, how do you expect them to see electrical changes in your nerves, measure that, diagnose you (finding the cause), and still give you a treatment that heals the cause?
It looks to me that our western medicine is way too primitive to find answers for us.
Not in this lifetime, not even in the next, unfortunately.
Posted by Keebler (Member # 12673) on :
- Excellent articles / books by ILADS authors over the years help explain many of the ways tick borne disease disrupts body function.
Not just when to suspect. This article is also 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.
THE BIOCHEMISTRY OF LYME -
Posted by Keebler (Member # 12673) on :
- Proper LLMDs and LL NDs will know how to assess beyond the kinds of black and white basic tests that most doctors use and can miss so much for those with TBD.
The key, the absolute key, a ditto to Brussels' statement from above:
"I gave up trying to deal with non-LLMDs long ago, and never regretted. "
This is the key, yes, the absolute key. If outside doctors are required / outside tests for anything that a LLMD or LL ND does not do . . . get their advice on who, then, to consult.
For those who no access to a true LLMD or LL ND, there are many books / articles here on how to do at least the basic best we can for ourselves.
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 . . . . -
Posted by Keebler (Member # 12673) on :
- Are we "co-dependent" when we keep trying to make [non-LL] doctors understand what's really happening with lyme / TBD?
It seems a co-dependent slippery slope [and many of us have been there; done that . . . over and over]
to try and try to get them to treat us when they have no education in this area, usually no interest and often are not even allowed to learn / do more even where they might be so inclined.
For a doctor who really is interested, there are ways they can learn - connect with ILADS, etc. but they would not be up to speed to treat just upon their interest.
It's a hard lesson to learn that most doctors are simply not - absolutely not - even able to treat a person with lyme / TBD, even sometimes for other reasons - unless they have the education that is not provided for them in medical college . . . that ILADS has figured out decades ago and keeps up with.
We can't make a doctor be smart in the ways we need them to be. They either are or are not. We have to face that.
We can't make them "see" us if they can't even see the ravages of TBD on their inferior tests - or when they don't know how to do a true clinical assessment, without their old inferior tests.
A doctor either can or can not. We can't change who they are so we might have to change how we think about our actions and put our energy to the most efficient use.
It's a vital question to consider - this co-dependent tendency that can emerge in this process. So, a little practicality below.
Some explanations here about how most regular doctors (and even "regular" specialists) think of those they declare only in need of a psychiatrist instead of comprehensive medical assessment & care.
Many reading this site have likely been declared a "difficult patient" somewhere along the line, likely very early on.
We need to understand their world. For as much as we want them to understand ours, we also need to understand theirs - and then we can better know if they are capable to tackle the kinds of medical issues we face, or not.
I've thought the same thing. This is a huge disillusionment, that medicine is not sophisticated enough to find and correct such a basic problem as this. But even if they couldn't correct it, that they can't even SEE it really bothers me. If it can't be seen, how do you know what to fix?
Posted by Keebler (Member # 12673) on :
- It's the politics, too, that drives the enduring refusal to address the issues.
The documentary UNDER OUR SKIN and the sequel, EMERGENCE really explain this.
So much is explained here. It taught me a lot about what happened with the revolving doctor doors' of endless refusals. They make money NOT addressing the situation.
And, IMO, I think SOME (certainly not all) like kicking a sick person when they are down. It's their pattern, collectively, where lyme / TBD are involved.
They want to blame the patients and twist the knives. Many doctors I've seen have had that kind of vindictive streak for someone they think is making all this up. It's a ripe situation for those kinds of dysfunction and abusive streak.
And, as consumers, we must get educated and learn how to select the professionals before just a cold call.
the films - Essential viewing and keeping in mind.
While ILADS, LDA, LymeDisease.org all continue their excellent efforts, we just each do the best we can with what we have / access to. There is no yellow brick road and certainly no Oz, yet We can find some paths that don't have flying monkeys. -
[ 01-07-2017, 09:43 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I forget if it was Lorraine Johnson or Pamela Weintraub who presented to the IOM a few years ago. The works of each of them explain a lot
it's eye opening as to the extent of IDSA refusal to documented science about lyme and patient reports
a lead to that, and a good person to keep up with:
- For more science, find the work of Tom Grier, a microbiologist. -
Posted by Jordana (Member # 45305) on :
Thanks Keebler -- I've read all that, more than I ever wanted to know about the science and politics of spirochetes and tick co-infections.
I know I have Lyme.
But the puzzling thing isn't that -- it's that there's no objective data or observation that explains my symptoms. No abnormal neurological exam, no abnormal emg, no hormonal issues, nothing that presents a functional answer to what the Lyme is DOING.
Right now I have this weird scary ataxia. Is my brain swollen? No, they say. So what is the physical explanation for this? They don't know. My neuro exam is normal. There is nothing wrong with my brain. So why is my body doing this weird unnatural thing?
I went to see the spine guy. He tells me there is nothing wrong with my spine, and I have a neuromuscular problem. I say well, I hurt my thoracic spine and I think it might be causing this new problem. He says no, impossible, or you would have an abnormal neuro exam. So how can my problem be neuromuscular if I have a normal exam?
I have to walk away from this conversation 350 dollars poorer with a big question mark over my head. How can this doctor say in the same ten minutes, you have a neuromuscular problem but you don't have a neurological problem?
This happens to me over and over again.
It's like, I'm a car. I take my car to the car GUY and say, this car does a sort of interpretive dance and then collapses on the road. Why is it doing that? The car guy would be able to tell me exactly why my car was doing this. He would not be able to tell me how it got into such a state, but he would be able to say, this is what is happening.
Car guys don't say, well, we just don't know anything about this broken car. We just have no idea. Go see this other special car guy. See what I mean?
Posted by Keebler (Member # 12673) on :
- You are asking the wrong people - they are not capable of understanding the causes.
And relying on the wrong tests.
You are asking for photographs of things that cannot show in a photograph, so to speak.
The previous links / articles answer a lot of your questions and EXPLAIN about the kinds of pain [as well as other symptoms] that lyme / TBD can cause and also how it just often does not "show" on black and white testing.
Soft fiber pain will usually not show.
Chemical & hormonal & enzyme deficiencies / dysfunction caused by lyme will not usually show on most typical tests.
The good news is that many structural problems have been ruled out. That's good. So then we know what else to focus on.
Much of this can come down to the health of the liver, even. When the liver is in distress, pain all of the body can occur. And liver distress simply does not always show on the typical tests.
There is still much we can do. And, as you say you know you have lyme, so much can well be explained so you might focus on just doing what you can one day at a time.
That's the best anyone can do, just take good care and cover as many bases with good common sense as possible.
While assertive and direct attention to the science of lyme matters - we cannot be too gung ho on some things. The body can't be pushed too aggressively. It's a tender dance that is not learned easily. -
Posted by Robin123 (Member # 9197) on :
Jordana, I think it's a number of things.
Inflammation.
Decrease in electromagnetic charge - it gets reduced across cell membranes, so ions don't flow back and forth well - it's like we're missing our cell chemistries.
Lack of vitamins, minerals, hormones, neurotransmitters, even beneficial bacteria in the gut that make good chemistry for us. Like when magnesium is low, there goes over 300 enzyme reactions in the body.
Think of it all as messed-up body chemistry.
We need to put back in us what we're missing. Like PEMF treatments boost the electomagnetic charge.
Oxygen boosts the body's oxygen. It's what Phoiph here works on with people here, for example, to help restore their health. Re getting oxygen into tissues and waste products out, I stretched out all my muscles in the pool 2 years before I found out it was Lyme, and got myself walking again.
Posted by Jordana (Member # 45305) on :
Yeah..but you were solving a problem -- you couldn't walk well. So you did what made sense to solve the problem. It was a functional solution because you had a general sense of the problem.
Once I could feel this pumping down my spine. The doctor said it was impossible to feel your cerebrospinal fluid. So what was that I was feeling?
Once I had this sensation that there were bb gun pellets shooting down on the inside of my calf. It wasn't neuropathy, it was just...this thing that happened. What was doing that to my leg?
I've had double vision for two years. They tell me it's "dry eyes."But it isn't; I've soaked my eyes with various solutions and it doesn't matter how wet they are, I still see double. If my eyes are normal, then why?
I can feel my left leg practically coming out of the socket and when I put my weight on it in certain positions I teeter. But there is nothing wrong with my leg, so what is happening?
I can't sit up for very long without collapsing. It's very strange, I lose all my upper body strength. Forget that there's no diagnosis, there's no *explanation.*
"Inflammation" is too general and I have no vitamin deficiencies. I can eat a bottle of turmeric and it won't stop any of this.
I can't believe that all these symptoms are completely invisible to medicine. They're just too weird and obviously wrong. People have been sick with millions of things over all of human history and medicine can't call anything that I'm describing by any name? Except inflammation?
That just does not seem right.
Posted by duncan (Member # 46242) on :
A lot of these diagnostic tools are either surprisingly blunt, or subject to interpretation (and therefore bias).
Regardless, you are looking for downstream effects anyways.
You may wish to explore another perspective, although it isn't that common yet. Metabolomics is emerging as a way to demonstrate systemic issues.
This is different than, say, looking for particular cytokine profiles. This looks at literally hundreds of metabolites.
Not many clinicians look at these yet, or even really know much about the research.
But the research is happening at some levels. Certain academic institutions, for instance, in particular Stanford. I know Stanford is doing what looks to me as good work here, although I think there are problems with its Lyme approach (too local to California imo, so the strains may not be representative of pan-US). They are also engaged in some groundbreaking stuff with ME/CFS metabolomics.
So, if you can demonstrate a global downstream effect, perhaps that is a good place to start? You can try to reach out to the Stanford guys and see if you can join one of its metabolomic studies...? Check out Naviaux and Gordon and crew.
Posted by Bartenderbonnie (Member # 49177) on :
God knows, everyone here feels your frustration and disgust.
Just look at all these posts from people all over the world. Sufferers for YEARS. Searching for YEARS. Unable to work for YEARS. Spending money it took YEARS to accumulate.
Eventually you WILL find answers, when, I do not know.
I had 5 separate Lyme western block tests. All docs told me negative. I got a copy of the last one done, and Lord behold, 3 specific bands for Lyme. That was enough proof for me, regardless of whatever C.D.D. says.
Get reports of any medical procedure and read and research any clue you find.
I requested an old urine test that I was told was normal. Lord behold, squamous epithelial cells, red blood cells, urothelial cells, and inflammatory cells found. Got new doc and got diagnosis.
When I lost use of my legs last summer, the E.R. wrote in my report that I had an altered mental state. Why ? Because they couldn't find anything. Mind you, they didn't write patient is hysterical because of freighting parenthesis.
Altered mental status can be used in your favor down the road. It's documented so might be helpful for disability or to prove you went from functioning to non-functioning, for whatever reason. It's evidence.
If you have seen many doctors, I guarantee, someone has MISSED something, somewhere !
And Lord also knows, if I should ever cross paths with ex-primary, give me the strength not to punch him in the face.
Posted by Jordana (Member # 45305) on :
That's what I think. Somebody missed something, somewhere. I do not believe I have some newly invented special problem that is reserved to just myself. There is something wrong that's called something other than Lyme. It may be because of Lyme. But I can NOT walk around with all this terrifying weirdness day after day and just accept it.
Today I woke up feeling shaking in my spine. I don't care if the spine guy doesn't think there's anything wrong with it, that's not normal and something IS wrong with it, it's shaking. One day when I was sitting up crosslegged my spine started vibrating like a water hammer in a plumbing pipe. Sorry but there has to be something somebody can see, going on inside me, causing that.
The meds might be helping, I don't know. But since I've been treating for a year and none of this has gotten any better there has to be an additional explanation. I don't even think it's an exotic explanation, I just think my conventional doctors so far haven't been very curious.
Thanks for your comment, duncan, I'll do some reading. I saw a documentary about ME/CFS and felt so bad for those people. No one was curious about them either.
Posted by Keebler (Member # 12673) on :
- What does your LLMD say about all this? Is your doctor an ILADS LLMD with lots of experience?
You might require a better one. They are best to determine what influences / symptoms can be lyme / other TBD and when you might seek out other avenues of diagnostics and exactly who could help with that.
Still, indeed, absolutely, lyme can cause all the symptoms you describe. But so can OTHER tick borne infections and other chronic stealth infections such a mycoplasmas, Cpn.
It seems that you are flying on your own here without an adequate LLMD to guide you.
For body relief along the way, though . . . FELDENKRAIS, ONLY with a lyme literate practitioner, though, to help with specific body gentle exercises to relieve pressure, etc. -
Posted by sammy (Member # 13952) on :
Jordan's, I was sick for 2 years, seeing over 80 doctors who were unable to help me or diagnose me. The kept telling me "I'm sorry, I see that you are suffering greatly, you are too sick, I/ we do not know how to help you." This is also exactly what Cleveland Clinic and Mayo told me!
Then for another 2 years I gave up on medicine and delved into all things alternative. I was going to make my body whole and well that way... Unfortunately I got progressively sicker. Finally my ND forced me to make an appointment with my now well known LLMD.
After 4 years and over a hundred practitioners, I was left on death's door. This LLMD doctor was my last chance. Thankfully, my new LLMD did truly care. He left no stone unturned. He listened, took a detailed history, then began the long search for why I was so ill. I wasn't the classic easy straight forward case.
Turned out I did have Lyme and several co's. It took us a few years (and treatment relapses) to learn that I also had Ehlers Danlos Syndrome, POTS w/ orthostatic hypotension, Mast Cell Disease, a severe form of CVID, etc...
Jordana, your path may not be simple and strait forward as it is for many others here. You may have other things that have yet to be discovered that will only be discovered in time.
Hang in there, your answers will come in time.
Posted by Jordana (Member # 45305) on :
See that just freaks me out. The Mayo Clinic couldn't help you and they're supposed to be the total experts on Weird Things Wrong. And the conditions you're describing aren't uncommon or unknown; all of them have been around a long time with many people flooding to the internet to talk about them. How did they get diagnosed? What lucky star do you have to be born under?
I have a pretty good LLMD now Keebler. I travel to see him. I believe he's treated several people on this board. But these people can't hang on the phone all day and can't diagnose everything; the doc does what he can.
Posted by Keebler (Member # 12673) on :
- Jordana,
You say "The Mayo Clinic couldn't help you and they're supposed to be the total experts on Weird Things Wrong . . ."
Not experts. Not at all.
Mayo is NOT a good place at all regarding lyme. If you look to them as a stalwart you are truly looking in the wrong place.
Many of your posts where you say "they say no big deal" mention typical medical sites / sources / PubMed. Do not accept that they necessarily know anything about lyme other than that the are purposely discounting it and doing major damage to many in their acts.
Any IDSA connected clinic, same, too. With only the most rare exception who would also then also be ILADS informed. -
Posted by Jordana (Member # 45305) on :
Its not me that thinks that about Mayo. It's my doctors -- my PCP wants me to either go there or go away. I actually would do it but I have a feeling it would be an exhausting and dispiriting adventure.
Posted by Keebler (Member # 12673) on :
- Be careful about flying around with moths. They can lead to the flame. -
Posted by dbpei (Member # 33574) on :
Jordana, I completely understand your frustration. You describe it so well. I have been going to specialists for years, in addition to my LLMD's, thinking that there HAS to be something that will prove that Lyme disease is the cause of my symptoms.
I look completely normal. But I too, experience internal vibrations and the feeling that cerebral fluid is moving around, but in my skull, as opposed to my spine. I live with constant sizzling and burning in my head and face. My skull often feels like it is being squeezed, as though it is a pressure cooker or short wave radio being tuned.
I sometimes worry that there must be a tumor pressing down on something to be causing my symptoms. But cat scans and MRI's seem to be negative (2 'lesions' show up that have been the same for 4 years, so the doctors think they are venous malformations - meaning I was born with these).
Cat scans shows a cyst in my sinus that I wonder about, but I have been told by several ENT's and oral surgeons that it is benign and unrelated to my symptoms.
I do have some abnormal tests (EEG, brain PET scan, neuro-psych testing) but they don't really tell us the physical cause of my sensations. I assume it has to be related to Lyme disease. But even with these abnormal tests, my insurance company does not consider them enough to prove I need longer duration of IV ABX.
We get mixed messages from the medical community. That is why people like you and me continue to search for some type of proof that we are going after the right thing.
Posted by Brussels (Member # 13480) on :
Jordana, who can explain life and life processes?
It's DELUSIONAL, in my opinion, to wait for such explanations. Not wanting to be mean, but I do mean it... (a pun?)
No one knows how life came to be, and how a body works in all levels (not even in a single level!!).
It's a bit like if you were waiting someone to prove how the first basic laws of physics appeared, so that you start moving in space and time (from the computer to the toilet, for example).
If you don't get your explanation about how physic laws first 'appeared', will you stay put in space and time?
It's like waiting for someone to EXPLAIN you how time appeared, if time even exists, so that you could make an appointment next week with your dentist.....
I mean, it's good you have questions. Even very good, really.
But getting stuck with them won't help you out of lyme and all the HUNDREDS of symptoms you may have, on an off, in a month.
Good you have time to visit doctors to discover if they can explain something to you. It means, you don't feel like immediate death coming.
I'm not joking on that.
I did feel like life was slipping off from my hands, and I needed treatment urgently, no matter which!
No time to 'understand' doctors, hospitals, talk to them, etc.
I had no energy to even raise questions! I just wanted to be able to walk again, to stand up again, to take a shower like everyone else, to go out and see the sun again one day without needing to throw up at the first sun ray I saw.
I have a more Oriental view of the lyme paradigm: 'What is true is what works'.
If I had to wait for someone to explain me things so that I could act, I would be long gone from this planet, ...
...my daughter would in wheel chair probably for life, with a handicapped brain and not being able to ingest anything without pain (due to uncountable food allergies).
Fortunately, we're not waiting for some God-like explanations from medical doctors, who are just human beings like us.
After many years reading about lyme, I don't blame the doctors for not knowing.
It's like blaming physicists for not knowing how time and space came about!! How can they know??!
I blame most doctors for not being compassionate.
the more I read about lyme, the less I feel I know. Why would be different for doctors?
Lyme is long solved, food allergies are finally disappearing, we're not only walking but doing sports and our brains are still fine.
Just relax, Jordana, give the doctors a break, and treat!!!
Many people here gave many interesting suggestions in this thread.
The electron thing Robin said, I only discovered much later, long after lyme was gone, how much electron-hunger I was and I didn't know.
Tell about that type of electron-hunger to medical doctors and get fired!! Posted by Jordana (Member # 45305) on :
Well like I said, I don't expect doctors to understand why I'm in this state. But see for example if I knew that I had a conduction block in my nerves then I would know that I was experiencing outward, measurable damage and I would be able to work on it.
But I keep hearing nothing is detectable. I think that's just impossible. And I mean unbelievable. I do not believe it. In the long run it might not be helpful to know these things but this is how I'm accustomed to solving a problem; to find out what is happening. It makes things so much harder when you can't.
Posted by madisongrrl (Member # 48682) on :
quote:Originally posted by Jordana: Once I could feel this pumping down my spine. The doctor said it was impossible to feel your cerebrospinal fluid. So what was that I was feeling?
Sounds like you are experiencing paresthesia.
quote: Once I had this sensation that there were bb gun pellets shooting down on the inside of my calf. It wasn't neuropathy, it was just...this thing that happened. What was doing that to my leg?
Why don't you think this is neuropathy? This sounds like another paresthesia symptom.
quote: I can't believe that all these symptoms are completely invisible to medicine. They're just too weird and obviously wrong. People have been sick with millions of things over all of human history and medicine can't call anything that I'm describing by any name? Except inflammation?
That just does not seem right.
Have you had an MRI to rule out a central cause for your symptoms. Else, your symptoms could be coming from the peripheral. EMG/NCS would check your large fibers for damage. A punch biopsy would check your small fibers for damage. Individuals who have symptoms of neuropathy suffer because doctors are very deficient with regcognizing symtpoms early and seraching for a root cause.
Posted by WPinVA (Member # 33581) on :
How much of a workup have you had?
Have anyone looked at C4a, Tgf beta, ANA, hsCRP, IGG food allergies, Marcons, HLAdr, etc.
Also do you know what your methylation status is?
From reading your posts, you strike me as someone who may be dealing with a complicating factor other than *just* Lyme. The trick is to figure out what that complicating factor is? MTHFR/methylation blocks? Mold? Autoimmune? Parasites? Candida? Or as is too often the case for us complicated cases, some combination of these.
Posted by Brussels (Member # 13480) on :
I agree with WP. It's RARELY lyme alone, causing us problems, specially if you are chronic.
As I told you, my approach is simply:
1) I may suffer from X (a guess, due to symptoms).
2)So I treat X with different methods, with or without professional help (in case they think it's not X, they won't treat me anyway).
3) If I get better, it might HAVE BEEN X, I mean, my original problem.
I really don't care if I had X, to tell you the truth, ...
...as long as life can go on, that I don't have pain any longer, nerve symptoms, tinnitus, that I can sleep, talk to people, enjoy a sunbath or relaxing moments, doing nothing.
As long as full relaxation is not possible, I know I'm not well.
I know my ANS is messed, my anxiety is still around, that my body (or mind) is in trouble , so I keep looking for TREATMENTS!
If some miracle explanation is available, and fits my treatment plan, good.
If not, I can't stop and wait for a MD-God to explain me why bacteria, parasites, mold toxins, candida, allergies, heavy metals, broken methylation paths, electrosmog, whatever are ruining my life.
Posted by Brussels (Member # 13480) on :
Once the drs find your problem, they'll put a NAME to your 'disease' or 'syndrome'.
Some people get happy when they say: I know now what I have: ALS. SIBO. MS. RA. Sjogren's. Raynaulds. Guillain Barre. ...
If it's chronic, they won't TREAT YOU ANYWAY...
....because all they can do with chronic diseases is SYMPTOM RELIEF treatments: anti pain, anti inflammatory, anti coagulation, beta blockers,....
Are you lacking insulin? They give you insulin.
Are you lacking thyroide hormones? They give you thyroide hormones.
Iron? Iron shots.
Magnesium? Magnesium tablets.
Does that look like they UNDERSTOOD the problem? The causes?
They don't know even how diabetes appear.
Or high blood pressure.
Nor how our veins get clogged. They invented that story of cholesterol, now the whole 'theory' is being debunked, even by average MDs!
Why some people have liquid blood, others thick blood.
Do they know what is RA (rheumatoid arthritis)? No.
How arthrosis appeared? (like bunions so many people have). No.
How lupus appear? How allergies appear for some, while not for others? No, no, no.
------------------------------------- Years ago, autism was only genetic. Now adults are starting to BECOME austistic.
So they are NOW changing the name of the disease to 'REGRESSIVE autism'.
Before, the cause was only genetic. Now it is both 'genetic and environmental' (because of the evidence with older children and adults 'getting' austistic).
does it seem they understand what is autism? What causes it has?
They EVEN don't know how mercury is so poisonous to any life on earth, but suddenly becomes helpful and inert when put in the mouth of people!!
What they know is how a leg is broken in a ski accident !! Cause: accident!
------------------------------------------------- If medicine were rocket science, we would be still moving about with horses and donkeys.
Medicine has little to do with science, more similar to cooking. Add something there, take off this, it tastes better! Or worse!
Put down your expectations on medicine, and you may get a more relaxed life!
Posted by Jordana (Member # 45305) on :
I feel like my workup has been exhaustive. I had a positive ANA for a year, then it went normal; and two anitbodies, one for myasthenia gravis, and then half of what you need to have sjogrens.
C4a had gone up to 5500 when I started treating -- tgf beta was massively high. I also have a carnitine deficiency. I have a double MTHFR mutation and Shoemaker's "dreaded" gene picture.
All my MRIs and CT scans have been normal. I have an adrenal adenoma that's "non-secreting" and a thyroid nodule that's active but all my thyroid levels are consistently in range; slightly hyperthyroid -- that's actually better than it being low.
I try not to think about it. I stopped obsessively researching because it really takes you nowhere. When you feel like I do though it's really hard not to think about it. Like you Brussels, I just want to find something that helps.
Posted by Phoiph (Member # 41238) on :
There will always be more "unknowns" than "knowns" in medicine, just like everything in the universe.
Medical science can't even explain how many common drugs like Tylenol or Penicillin work:
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