Recommendations for the Very Best Tests Available

for lyme - Igenex

but probably best to do a range of different tests that use different methods- as sensitivity is a known issue - which means you cannot be confident a single test will pick it up
-defo do a western blot / immunoblot ( tests for a number of different antibodies to borrelia )
-a LTT test - tests the white blood cell response to borrelia - can be positive even when antibodies are not
-pick one other to improve chances of getting a positive

TBRF can present very much the same as Lyme - especially with co-infections in the mix - so that's worth considering - Igenex have a test for this - i suspect its a bit easier to test for compared to lyme - but i've not been into the weeds on it

for bartonella ( which in your shoes i would do - because of the MCAS, Neurological stuff etc which is pretty typical of bart - and also because anything that can give you Babesia can also give you bart )
- testing is much trickier than lyme - as sensitivities are generally much lower.

Galaxy diagnostics has the best published validated test - its called a triple draw DD-ePCR
its expensive - i think it needs to be accessed through your LLMD
igenex have a multi-species bartonella western blot or immunoblot - which is not as good - but is cheaper
could still throw up a positive - but negatives would not be conclusive

i had negative bartonella tests at Armin - but later found it with very high degree of confidence based on its unique presentation in thin blood smears ( red Dr M the bart specialist - who uses the same teqniques to track treatment progress in his bart patients )
in the USA - T-Labs do this test also - but i think only by referral by a LLMD who is consulting with Dr M on your case.

i personally would not bother with tests from other 2nd tier labs - they tend to go to market based on lowest cost for multiple test test panels - but do not seem to have published robust validation studies - and the test lab industry is not highly regulated - so they may simply be random number generators.

keep us posted

As someone from Europe who can live of the government If unable to work, i have always wondered how people survive in the turbo capitalist America. Do you have a similar Programm for chronic ill people?

BlazerGermany said...
As someone from Europe who can live of the government If unable to work, i have always wondered how people survive in the turbo capitalist America. Do you have a similar Programm for chronic ill people?

Social Security disability was what people try to get on but it's not a great program. It doesn't give enough monthly to live on. For example, the average payment in my state is less than the average rent for a 1 bedroom in my area. It's also notoriously hard to get on it. They almost always deny the first time and it can take a year to multiple years to get approved if you can get approved. Lastly, something like Lyme, or tick-borne disease in general, isn't looked at as a chronic condition in the U.S. so you aren't likely to get approved off that diagnosis.

You really just have to be lucky. For example, I am lucky. My wife has a good job and we moved into my parents house with my mom after my dad died last year (Obviously not lucky that my dad died but just in the sense that we had a place to go to save some money). If you don't have somebody to fall back on you are screwed.

For me I was diagnosed with many other illnesses previously. The best way to go about getting disability in the United States is to get a diagnoses for things like mental illness (anxiety and/or depression) and then something like fibromyalgia. Then you can go about getting disability. This works as this is what I did and I was lucky to get approved for it many years ago. Then years after I found I have chronic lyme.

It's a fun process, I know. It's terrible. Everything to housing and disability is a nightmare to deal with in the U.S.

As for how long it took, I applied in 2012 and got it within 6 months. They likely saw that I had many health conditions and said there's no way to argue that I am not disabled. I wish anyone with this debilitating illness the best of luck when it comes to financial help, housing, and of course proper treatment.

Girlie - That's great to hear! I am sorry to hear that it was so much trouble to get back to work, but it's nice to see how things are working out now. People can be so harsh when they don't understand our illnesses or the symptoms we have/went through. That's why I believe it's important for us to be kind to one another and watch how we speak and act. There's a way to address people in this world and unfortunately, years ago it was impossible for people like us to look like anything else but a nutcase. People can't understand what they don't see. I don't blame them, but I do when we try to explain and they aren't willing to listen.

How do you like it? Is it easy enough on the body to where you feel it's comfortable, or at least tolerable?

BlazerGermany said...
As someone from Europe who can live of the government If unable to work, i have always wondered how people survive in the turbo capitalist America. Do you have a similar Programm for chronic ill people?

Howdy. Lymie24 answered the question much better than I could have.

I'll add that if I had lost my job through no fault of my own (e.g. like a layoff or if the company had closed), I would have been entitled to receive unemployment payments. But, I resigned. So, I wasn't entitled to receive anything.

Those unemployment benefits are funded through the federal and state income taxes that companies pay to the government. How much one gets and how long they get it varies, depending on the state and how much the worker was earning. But, there is a cap (a limit) on how much one can receive and how long they can receive it.

This is from March 27, 2023:

Which States Pay the Most in Unemployment

The amount that those who find that they are out of work and eligible to collect unemployment benefits varies greatly from state to state. According to Savings to Invest, a personal finance blog, the stingiest state is Mississippi paying out at most $235 per week, but at least the state pays up to 26 weeks of benefits. Alabama, Louisiana, Tennessee and Florida all pay at most $275 per week, but Florida will only cover 12 weeks currently.

At the other end of the of the spectrum is Massachusetts which boosts household incomes with up to $1,051 per week plus $25 per dependent. Additionally, recipients may qualify for up to 30 weeks of benefits. Following the Massachusetts for highest benefits paid out are Washington, Minnesota, New Jersey and Hawaii which all pay 26 weeks of benefits ranging from $999 to $765 per week.

---

Again, this is irrelevant to me, since I resigned. So, I have been living off my retirement savings. Because I'm not retirement age, I have to not only pay taxes on the money I withdraw, I have to pay an early withdrawal penalty, too. Even if I were retirement age, the little remaining money wouldn't been enough to live on, anyway.

While resigning my last three jobs seems like it was an option I chose, the reality is I couldn't do the work anymore. So, really, my job loss was "through no fault of my own," since I didn't ask to get a tick bite and get sick. But, of course, the government doesn't look at the matter the same way we do.

It continually baffles me how, with all the resources this planet has, we allow people to go without basic needs like clean water, food, housing, and medical care. In the case of unemployment benefits, in the lower paying states mentioned above, the monthly payout will not be enough to cover just housing. Thus, there will be no money for food, electricity, water, any medications, or other necessities. It's completely absurd.

THE BEATINGS WILL CONTINUE, UNTIL MORALE IMPROVES!

Thank you, friend. I wish the best for you and everyone else, too.

Deep_sleep said...
Did test for nutritional deficiencies, mold, heavy metals, lyme and stomach health (stool test).

Since testing for many of these items is contentious and prone to be peddled by pseudoscience practitioners, what tests did you select for each category? And, how did you conclude these testing methods were valid?

The Dude Abides said...

Since testing for many of these items is contentious and prone to be peddled by pseudoscience practitioners, what tests did you select for each category? And, how did you conclude these testing methods were valid?

I read a book about Lyme where multiple doctors gave their views on how to treat it and what tests are good, and based on my issues. We both got sick during living one year in an apartment with mold, I had a bull's eye on my leg for over one year untreated, I ate a lot of cans of tuna when I was younger, low iodine is common with Lyme, and it's good to adjust your supplements and food if you have some imbalance. Ibs was also one of my biggest symptoms. I went with the ones at the practioner I went to.

I got that I had issues with all these, and also Sibo. This helped me adjust my treatment and lifestyle factors. I went with a more expensive test for mold, lyme I knew had and knew about poor testing for that. The heavy metals test I did wasn’t the best, but it gives some indication. I would argue that normal medicine is pseudoscience, with the extremely low focus on lifestyle factors, but that is another discussion.

yep - its like a Venn diagram

3 circles - "alternative medicine theories", "conventional medicine theories" and "objective truth" of how things actually work

the three overlap - but only with a relatively small area in the middle it seems

(the diagram would actually be impossible to draw accurately right now as "objective truth" is often simply not yet known - so its kind of a placeholder for an area that represents the concept of what it would be if it were known)

its curious that so many things are diametrically opposed between "alternative medicine" ( to which i would include functional medicine, herbalism, mind body techniques etc) and "conventional medicine"
eg
-Lyme - chronic infection - vs - post infective syndrome
-GERD - too much stomach acid vs too little (causing SIBO and gas pressure and thereby reflux)
-thyroid - just give T4 - vs - T4 insufficient - T3/T4 both needed
-heart disease- cholesterol in the diet causes arteriosclerosis - vs dietary cholesterol is not the cause
-depression - neurotransmitter imbalance - prescribe neurotransmitter based medication - vs many other causes

the list goes on....

i have to say - having read into many of these subjects in some detail - i have found there is often a good deal of science supporting the newer more progressive functional medicine approaches and theories.

of course they do not always have it 100% right -

i think a large part of the discrepancy between the two camps is that conventional medicine - especially as practiced by our primary care providers - is really 20-30 years behind the current wave of research on any given topic - as that is what is taught from medical books in medical schools - rather than the latest research.

but reputations in the conventional medicine community have been built on publishing certain theories and views - its an extremely hierarchical reputation driven system - and there is resistance to back tracking - even when evidence to the contrary emerges - as it always will with science ( this is a part of the scientific method).
add to this the inbuilt conservatism of large medical institutions and you can see how slowly they change - even while research moves on.

functional medicine on the other hand actively seeks to utilise the latest research and differentiate itself from conventional medical practice - in trying to interpret and use the most resent research its often working with data from a single study, not yet verified by more studies - or trying to interpret studies with less than perfect methodologies ( almost all studies are less than perfect - that's why it often takes many different ones to reliably demonstrate a point) and hence the risk of overstepping is higher.

so i think a lot of the diametrically opposed views are really representing a large time gap in the science they are using as the basis.

overall - i think this paradigm is useful - as it helps us understand what to look out for:
in conventional medicine - everyone acknowledges 50% of what it teaches is found to be wrong in 20 years, but no one can agree which 50% at any given moment in time. it moves v slowly - is dogmatic - defensive - and often ignores later high quality research.

in functional medicine ( here i am considering the more evidence based reputable ones - rather than the total charlatans which no doubt exist in this space) - is often more up to date and probably on the right track - but - in its efforts to interpret and use the cutting edge research - it tends to draw too many conclusions from relatively scant evidence - and has a tendency to over step.

both have a tendency to present themselves as knowing far more - or knowing things with far more certainty than they actually do ( something in common with all humans who have gathered a degree of knowledge) so a healthy scepticism is needed to navigate either world

overlaid on this is of course the influence of bad incentives which further influence what is seen as true - by mechanisms like determining which research gets funded, what results get published etc - and also serve as motivations to muddy the waters or deny the truth, esp where financial gain, or reputational damage is concerned.

i suspect this operates more broadly and widely in our society than we typically realise.
for instance - would we expect the drug companies to try to influence research being published that supports the validity of products upon which their share price depends for the next 20years? for instance by funding research on neurotransmitter based antidepressants for depression - but not research into, say, the causes of neuroinflammation ( another equally valid cause of depression).

do we think food corporations that make their profits on processed food to influence how the health impact of their products is perceived. for instance do they continue to fund studies on mice that support some macronutrient is unhealthy, eg saturated fat - and their products are therefore less so because they are for instance - "low fat"

can the editors and review panels of even the most respected scientific journals be influenced in terms of what they are more likely or less likely to publish?

its no wonder the average person finds it nearly impossible to navigate this situation, when even what appears in the total pool of knowledge from which we have to try to extract "objective truth" - is itself influenced not only by the difficulty of the science - but also by the interests of institutions and corporations.

The big problem with conventional medicine is that it leaves so much on the table. Diet, exercise (movement), stress, relationships, and sleep are so important, no matter what illness you have. Functional medicine focuses more on that. Another big positive with this is that your performance in every area improves. The silver lining in my illness is that I have been forced to learn all this.

To clarify, I don’t mean that more exercise would be better as a lot of people here, would feel quite awful after exercise. But doing some movement, and getting your body in a position where you can exercise some will help your health. In the beginning that might be walking or some light exercises in bed.

Post Edited (Deep_sleep) : 6/9/2023 9:56:36 AM (GMT-8)

“TBRF can present very much the same as Lyme - especially with co-infections in the mix - so that's worth considering “

Garzie - do you think TBRF needs to be tested?
The treatment for it is the same Lyme.
And he definite should treat for lyme.