Be your own doctor/advocate: Not everything is lyme

Hey folks it's been a while since I last posted here. I've still got a lot going on and I feel pretty ghastly most of the time. I thought I'd pop back in here just to let people know how I'm doing.

Last year I tried a great deal of lyme and co related treatments as well as in those previously. As well as having my gallbladder removed. None of which helped much at all. It's been a very perplexing journey and I thought I'd share it perhaps for the benefit of anyone else who may find themselves in a similar set of circumstances.

Earlier last the year, I tried disulfiram at full dose. I did it for 6 weeks and felt next to nothing, except, perhaps the dopaminergic effects that have been well documented in the literature on it's use. So this was a bit of a disappointment.

I also managed to go full whack on Mozayeni's bartonella protocol later in the year, without any ramp up. Clarithromycin and Rifabutin, the former increasing tissue concentrations of the latter to a significant degree. Nada. So I ceased using it.

I did SIBO treatment and testing as well, my SIBO test was negative for both methane and hydrogen. I treated both and even added in herbs for H2S (hydrogen sulphide) SIBO.

Alongside all of the lyme treatments, I also had some testing done, a gastric emptying study - normal, a small bowel follow through -normal, and most recently a colonic transit study - that showed my colon doesn't function like it should.

I spoke to a doctor about my abdominal symptoms - which bizarre as it sounds, seem to be causing a lot of the neurological dysfunction and fatigue, as well as a few other symptoms. He mentioned the possibility of a very little known and rare disease called Median Arcuate Ligament Syndrome. I'm hoping to get this ruled out in the coming few weeks by a CT angiogram. The other diagnosis is colonic inertia where the colon has a dysfunction of motility. I'm currently using motility agents right now, but they don't help much.

I suffer from chronic constipation but I seem to go every day. Previously, I have been diagnosed with IBS but this is seriously disabling. My colon is full, even though I go every day at least once, which makes me think there must be some issues with overflow diarrhea etc that somehow resolidifies or something.

Also I have x-rays now showing my transverse colon is full of gas or waste, which has probably been causing my issues with belching/regurgitation. I am also constantly short of breath and again the transverse colon and the flexures being full is probably what's contributing to this. It feels like I can't take a full breath, probably due to the constriction brought about by the poorly functioning colon. This symptom also happens to be one of the MALS symptoms, but I don't have many of them and they can cross over - it's a right ruddy tmess. Seizures have been noted in MALS, which is something I suffer from - pseudoseizures that is. POTS can even be caused by both or is comorbid, I am learning also.

Anyway, I'm now facing one of 2 diagnoses and treatments - both of which most of the doctors I've seen are hopeles on. Both of which, unfortunately (and grateful though I am that I think I have found my answers,) involve surgery. I am hoping to save up and fundraise among family because waiting times are years post covid - which is again seriously depressing. I'm grateful there may be an end in sight.

The most recent study, I insisted with the consultant that I saw, that he run this test. He made a whole fuss about it and was a little disparaging on the matter. I just straight up said what it was I wanted done after we discussed some of my history. A lot of the time, the power dynamic that arises between patient and consultant has me feeling like I need to tow a line in order to be treated like a human being. It's all been traumatic to say the least and being a meek doormat has never gone well in the consulting room.

The healthcare system doesn't work for chronic illness at all, as you guys know. Advocate for yourselves and never stop researching. I really, really wanted to give up on life towards the end of last year because I just couldn't get answers on what was wrong with me. My symptoms have been so bizarre it's been very isolating and painful seeking answers if I'm honest.

We're all in the same boat being sick and having to fend for ourselves against a healthcare system that isn't fit for purpose globally regarding chronic illness.. Don't ever give up and, if something isn't working, please go down the other avenues. I'd love to be able to treat whatever it is I have with antibiotics and herbs, but it doesn't seem to be the case and I know from personal experience it's possible to be so invested in the next thing working. It's an easy trap to fall into, to blame everything on lyme and co and understandably so. I hope this comes across tactfully, I don't want to discourage or disparage people. Lyme is horrible to deal with on a long term basis in itself, from what I've observed and seen and heard firsthand. It's entirely possible to have comorbidities that we dismissed because everything is often placed under the blanket of lyme - "the great imitator." I've seen this a lot in the facebook groups.

I'm grateful for the community and how supportive everyone here has been. Especially through some grim and dark times over the past few years. It's an invaluable resource, this forum. In particular it seems that there is a greater intimacy and sense of community than that of the facebook groups which I also used.

Thank you guys all for everything. I guess I'll try to help when I can. I just feel kinda useless a lot of the time. At least I know now a boatload about about tick borne illness, lol.

Post Edited (TBD Buster) : 2/19/2024 8:28:38 AM (GMT-8)

Sorry about the relative. That's rather sad.

You make great points! I think a lot of the LLMDs do it from a place of wanting to help, same for fellow chronic illness sufferers with Lyme as well.

Thanks for your perspective. It's misery indeed. Nobody with chronic illness is having a good time of it, that much I have observed everywhere! Which is dreadfully sad. I guess it's just the nature of medicine unfortunately, it also shows us the worse sides of human nature too.

Change will happen, one sick person at a time. Jack and Amy Kempainen LeBoeuf's story about bartonella is a really nice one. Thank God she never gave up on her son. That's how the change happens.

I like hanging out here too. It's just yeah I don't feel I have much to offer any more. I guess I'll try to help all the same.

Take it easy Blazer!

i think one of the problems is that its not the case where all ailments are lyme - or no ailments are lyme
-it could be lyme
-it could be something else
or
-it could be lyme AND something else
( not saying it is in your case TBDBuster - i mean in the general case - where someone is chronically ill and doesn't know why - so sets off down the self diagnosis path)

the two things are not mutually exclusive - this makes things very hard to fish apart

in fact most people with confirmed lyme have other co-morbidities - caused or exacerbated by lyme -
things like autoimmunity, hormone dysfunction, gut issues etc etc - making it increasingly grey

lyme should really be a diagnosis of exclusion - unless the signs and symptoms like bulls eye rash, history and positive blood tests etc all line up from the off.

the best LLMDs approach it like this - but not all LLMDs are good

astroman said...
"The healthcare system doesn't work for chronic illness at all, as you guys know. Advocate for yourselves and never stop researching."

Yep. In my case , I found something very rare from my own researching that came up from some strange immune tests that my LLMD did. Then I went further into non-lyme territory. I had both. Lyme could have triggered it,(tripped the gene switch to "on"?) since I have the gene for this rare blood disorder too.

And Lyme and Co does not cause everything. We are human. Humans have endless possibilities of health issues.

All we can do is treat, then make note of the outcome. There will be different levels of progress, and some not at all.

Thanks astroman. You're absolutely right. Sometimes it's good to be able to take a step back and look at the bigger picture and explore other possibilities. I guess in that respect, it could be a good thing as being open to lyme disease and it's consequences, may open others minds to other possibilites and research other things also.

It's a really difficult place to be mentally, emotionally and physically chronic illness.

I guess even our best efforts, can amount to nothing which is a grim reality. Chronic illness is a road that's different for everyone. A road I pray is short for those who do fall into it, or that they find answers.

The Dude Abides said...
Doctors should have more license to try non-conventional treatments that they deem to have low probability of risk and harm, especially if the standard treatments fail.

this is a key point

of the dozens of doctors i have seen the majority behave as if threatened by the complex patient and the challenges they pose

medicine for these patients should be a collaborative discussion between doctor and patient - with the aim of finding ways to help the patient that are reasonable balances of potential risk vs potential benefit - the patient should have equal or more say in these discussions - through fully informed consent.

critically, these discussion must acknowledge that doing nothing is not a zero risk option. patients with these complex conditions usually deteriorate or develop often serious - sometimes life threatening co-morbidities over time.
therefore the disease is not static - and as a result there are serious risks incurred by simply doing nothing, or refusing treatment, that must be weighed against the risks of say long term antibiotics treatment.

if this paradigm was accepted - then avoiding treatment would not be a viable option

in practice, most doctors i have seen, seem to want to find reasons to avoid any treatment at all - if they don't have a simple test or flow chart to follow.

on the other hand, CFS diagnosis are given out freely - without proper screening for other conditions - and despite the fact that there are no effective diagnostic tests to confirm or deny a patient has it. once on their file this becomes a dead end for patients - as and no effective treatments ( unless you believe the findings of things like the PACE trials - where data was later found to be falsified by the authors - but only after patient advocates had to take them all the way to the high court to get the raw data disclosed - despite this study being entirely funded by public money).

strangely - the same doctors happily prescribe 12 months of the same antibiotic to teenagers with acne - ( i have a niece who has been prescribed them for 4 years or more ) where the risks to the patient are the same - and benefits, even if the abx were to help (which they often do not) are largely cosmetic - rather than life altering or life threatening

it really is a strange dichotomy - one i think can only be explained by the culture and bias in the medical institutions that train and govern doctors - making it fine to prescribe 12 months of antibiotic for acne - but not for real infectious diseases.

it also seems to fly in the face of the published good medical practice guidelines ( UK version below )

General Medical Council said...
Good medical practice sets out the standards of care and behaviour expected of all medical professionals.

It covers areas that include:

-making the care of patients the first concern
-providing a good standard of practice and care, and working within competence
-working in partnership with patients and supporting them to make informed decisions about their care
-treating colleagues with respect and help to create an environment that is compassionate, supportive and fair
-acting with honesty and integrity and being open if things go wrong
-protecting and promoting the health of patients and the public
This guidance came into effect on 30 January 2024.

Garzie said...

medicine for these patients should be a collaborative discussion between doctor and patient - with the aim of finding ways to help the patient that are reasonable balances of potential risk vs potential benefit - the patient should have equal or more say in these discussions - through fully informed consent.

critically, these discussion must acknowledge that doing nothing is not a zero risk option. patients with these complex conditions usually deteriorate or develop often serious - sometimes life threatening co-morbidities over time.
therefore the disease is not static - and as a result there are serious risks incurred by simply doing nothing, or refusing treatment, that must be weighed against the risks of say long term antibiotics treatment.

This is a very salient point you make. Too often, it feels like there's a power imbalance, brought about maybe, by the limited time that doctors are now given with patients - in the UK at least. 15 Minutes to do everything is just not enough time to get things done, that and a failure to see one GP consistently is a big stumbling block

Informed consent is the way forward as you say. Doing nothing is outright dangerous and really needs to be discouraged.

CFS is also handed out like nothing too.



The Dude Abides,

Thank you so much for your comment. I've been here for about 4 years or so, just I got a bit concerned about putting out personal info on the internet, hence the name change, I was Cignet before. Not sure if you remember me. I'll try to keep you guys posted on what's happening with me. I feel prety awful most days, keeping up with healingwell is hard now.

“I've been here for about 4 years or so, just I got a bit concerned about putting out personal info on the internet, hence the name change, I was Cignet before. “

I remember you, Cignet!

Yes, I’m still working in the elderly care home kitchen.
I gave up my part time job and went to casual status.
Casual means that the schedulers send texts with shift offers and I bid on the ones I want.
The person who has most seniority gets the shift.
I have only said “yes” for three so far this year.
I usually get the ones I bid on because I have a lot of seniority from past years (pre Lyme days)

HI TBD buster, I don't know if this is helpful or not but I also have chronic constipation - recently told that it's called slow transit constipation which is where the nerves don't work properly causing reduced gut motility.

This explains why increased fibre, fibre supplements, increased water intake, water bulking laxatives don't work for me.

I have found that sennokot and bisacodyl work for me; they are two laxatives that stimulate the nerves to cause bowel movements. Perhaps this would be helpful for you too?

I struggled with gastroparesis in the early years of my illness. Not sure if that's technically the same thing you're describing, but it's a neurological condition that causes dysfunction in the nerve signals sent to the gut and interferes with peristalsis and motility, so ... sounds similar! The effect is often constipation and occasionally diarrhea, people are usually told it's IBS initially, and the Lyme world calls it "Bell's palsy of the gut" because it's a fairly common presentation of Lyme. I'm wondering how different gastroparesis is from MALS and the slow transit or colonic inertia diagnosis Emma mentioned. I only saw functional medicine folks and neurologists for the issue, so I'm wondering what a GI specialist would have called it. (I didn't see a GI specialist because I assumed they would not be helpful for a form of dysautonomia, and knew they'd make me undergo tests that would exacerbate symptoms.)

The thing that helped most - that helped immediately and drastically, actually - was acupuncture. My case was somewhat unusual because it involved inertia in the upper half of my GI tract, so I was nauseated and never hungry, it was a fight even to drink water, and whatever made it into me felt like jagged glass, but things did come out normally in the final stretch. (Constipation seems to be a much more common presentation of gastroparesis.) I was eating fewer than 300 calories per day, mostly liquid, for a year. Every week for about two hours after my acupuncture appointment, I would be ravenously hungry for about two hours, and would stuff my face and digest everything perfectly. Then peristalsis would stop until my next appointment, but I can safely say that I would not have survived the first year of illness without acupuncture enabling me to eat occasionally.

Treating gut dysbiosis with herbs also was helpful, more gradually - berberine, artemisinin, olive leaf, black walnut, and wormwood. I took them on an empty stomach in the morning every day for a month. I felt crummy from this, and was also using Byron White AL Complex at the time, but I lost 25 pounds by the end of that month - just in weird dysbiotic waste my body got rid of. (Remember how little I was eating for so long? Because of dysbiosis and gastroparesis, I never lost an ounce of weight in all those months of eating only 300 calories per day. Crazy!)

I think it's important to consider the impact of chronic stress (and related theories like the cell danger response) in a lot of neurological issues, especially since the gut and brain are so closely linked. In my case, I think tick-borne infections triggered a lot of things, but unhealthy thought patterns, traumas, and acute life stressors also played a role for me, and continue to. For a long time, I wanted to blame everything on Lyme because taking antimicrobials is way easier than doing the incredibly hard work of untangling unhealthy neurological patterns and the neuronal pathways in the brain that perpetuate some symptoms. We're complex creatures with very powerful brains, which can be a blessing or a curse!

Not sure if any of this is helpful, just sharing my experience!

Medication doesn't work and the symptoms are disabling. As I said, I can't walk around, without being short of breath, which could be the MALS or the constipation, I am unsure and it's incredibly frustrating.

I am going to push for more testing, because it's almost certain I have a motility disorder or something. It's having more of an adverse effect than I can stress on my day to day life than I can stress in text. I don't even know how one can fully articulate it if I'm honest. It's been a very difficult and long journey trying to get a diagosis. Especially with the waiting times caused by the COVID backlog.

From what I've read a lot of people have the surgery and it's an adjustment but it's better than life before. Not without risks of course.

I need a solid answer though. I have been diagnosed with FND which makes things more frustrating as it's used as a cop out by doctors that don't know what's wrong. A lot like to point to it and say it's somatisation or at least it's a subtext in interactions.

I appreciate the sentiment but things are quite bad and I imagine some kind of surgical intervention is indeed going to be necessary. I am just being realistic about things myself.

Post Edited (TBD Buster) : 2/25/2024 5:44:14 AM (GMT-8)

The sub topic here on gluten.

Even conventional medicine, nowadays is starting to acknowledge that there are different levels of gluten sensitivity, all the way up to celiac.

I tested for celiac antibodies a couple times and came up negative, but Since I am low in immunoglobulins, my body may not be able to create certain antibodies. The doctor even mentioned this.

However, the LEAP MRT cytokin, multi food test, showed gluten releases cytokines in my blood,… which is gluten sensitivity.

This creates symptoms a little less obvious than full-blown celiac disease.

The variety of breads are tried in the past with the exception of sourdough, would create some gas and bloating after digestion. But more importantly, I found gluten caused an auto immune response with my thyroid gland.

When I eliminated gluten one of my elevated thyroid antibodies of 25 years normalized in six months time and a thyroid nodule that I was known to have via imaging for about 10 years also disappeared.

Post Edited (astroman) : 2/25/2024 10:27:09 AM (GMT-8)