New with lots of questions

Hi!

I am almost 40 years old. I have been struggling with symptoms since I was pregnant 11 years ago. It started with foot pain, then my wrists would hurt. After I had my second child, I had even more symptoms. I was diagnosed with CFS in 2014, then Fibromyalgia in 2019. I have seen an Urologist for bladder pain, numerous podiatrists, acupuncturists, rheumatologists, done neurofeedback for anxiety, all kinds of things. I recently talked with a new naturopath about trying to deal with a fun MRSA problem. She said she thought I had Lyme. After reading up on it more, I think she is correct. I have not done a specific blood test, but we are treating for it.

I am currently doing a coffee enema, castor oil pack and himalayan salt bath daily. I am taking silver hydrosol, and supplements. I'm about to start Microbe Formulas Para1 & Para2 and do a liver flush. I am interested in maybe getting a Rife, but don't know much about how to learn how to use it. I was also interested in whether I could buy a used one off Ebay and what to watch out for. I would love to buy a small sauna, but get overwhelmed when I research.

I have an almost 11 year old daughter. She has very very low muscle tone. She didn't walk until she was 5. She also had FTT and still has a g-tube. She's cognitively normal. The naturopath mentioned that she thinks her issues could be caused by Lyme and sent me a bunch of supplements. Has anyone had a child that was affected in-utero? Has anyone been successful with helping them heal from Lyme and gaining strength? I hate to think that she caught this from me - we had always been told it occurred naturally.

Thank you for any help!

Has your daughter done an ischemic muscle test and/or genetic testing for any metabolic syndrome diseases (mcardle's, ampd1 deficiency, etc)? You def need to rule those out in this situation.

Post Edited (dcd2103) : 7/12/2021 10:28:49 AM (GMT-6)

I would suggest a blood test for Lyme and co-infections. You dont want to treat without having a general idea what your treating.

Lyme and bartonella. Don’t miss bartonella. If possible, I would try to get both of you evaluated by an LLMD and get tested for some tick borne diseases.

i have not formed an opinion on Rife machines - but there is a very large support thread with a great deal of information in it here
https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/88778?#000017

i think if it were me though i would prioritise the mainstream approaches that seem to work for the most people first - on the rational basis that what works for the majority is most likely to work for you - and only after trying those move on to the more fringe therapies if needed.

antibiotics and herbs - or both together along with necessary diet and lifestyle changes seem to be the things that work for most people most of the time

testing is problematic - but if you are "lucky enough" to get a positive test results it can give such a helpful focus and specificity to your treatment that i do think its worthwhile - but again use the trusted labs or the results may not mean anything useful.

negative results typically mean far less - as the way the testing works - false negatives are very common - and so a negative test overall does not( should not) change your choices or decisions.
better to know this going in as as much as 50% of us will be in this group after testing.

bartonella in particular is very difficult to get a positive result for even if you are infected - most tests are less than 25% sensitive ( miss 75% or true cases)

this may seem shocking or even hard to believe - so much more complex, nuanced and challenging than we thought would be the case - but much of what you will learn in this world of lyme disease and co-infections will seem like that I'm afraid
( its actually the same in many subjects in reality - we just rarely have a need to dive into the limits of what is known in any deep subjects in normal life).

testing to rule out other conditions is very valid though - and there should be a pretty long list of things that a LLMD or even regular MD or ND should test for to rule out other causes - before diagnosing Lyme,
you don't really want to do long courses of combinations of antibiotics or even herbs if in fact its something else - not least because you may waste months or years of your life doing so and waste considerable funds if its not lyme,

on saunas - i did quite a bit of research into saunas - and built one and used it for 3 months - but cannot say it helped me noticeably - i think they are a supportive therapy at best.

that said i did quite of research into the subject - the headline is: the best sauna's for health are near infra red
useful resources here
https://sauna.space/products/infrared-saunas/luminati-infrared-sauna#natural

i based my design on this $3000 one using the exact same bulbs - as its actually just the bulb that produces the light spectrum and intensity that is important - according to the research on the topic.