My personal opinion after reading through some of your older posts on this forum, your so called Lyme Literate Doctor is just treating the symptoms and not the root of your cause.
Being concerned about
things like mold and testosterone levels is somewhat important to monitor, but if you don't start treating the underlying cause of all these problems, you'll never get better.
A true LLMD treats the infection in the beginning stages, then if your testosterone levels or thyroid dont bounce back later in treatment, then you can start treating these things. The one thing you got going for yourself is your young age, which history has shown the teenagers and people in their 20s always do better with antibiotic treatment than those in their 30s, 40s, and 50s.
My personal opinion is mold and a lot of these other issues were blown out of way proportion through the earlier days with Lyme Disease when we didn't know what was keeping this disease chronic. Now after learning more about
biofilms, persister cells, and resistant coinfections like Bartonella and Babesia... This is what the top Lyme Literate Doctors are targeting these days, such as Dr. H and Dr. J.
Your 19 years old, you shouldn't be screwing with testosterone at that age. If you treat the underlying infection, your testosterone levels should bounce back "with time."
The problem with treating testosterone is it can lead to your body stop producing it once you get off of it.
How are your thyroid levels? Personally I'd be more willing to treat with a natural thyroid booster like Armour or NP Thyroid rather than messing with TRT, which testosterone can result in some serious side effects.
Branch08 said...
I made a post on Easter about how awful I felt & how awful my anxiety was. The next day I actually noticed I had some kind of spark of energy that I havnt had in a long time. I mean it wasn’t a huge difference but as you all have probably experienced, a little difference can go a long way when you’ve been feeling so bad for so long.
This energy went on for about 3 days. So of course I’m asking myself, what did I do differently? I am on treatment right now. Doing 3 months of mold (CIRS) treatment & about a month in so far. After that my doctor wants me to take dr shoemakers vcs tesr & if I pass she’s wanting to start the Lyme treatment.
Why do you all think I had this bit of energy? I’m not complaining about it I just want more of it!!!! Is this a sign maybe what I’m doing is working?
Reading what you said here in this post...
https://www.healingwell.com/community/default.aspx?f=30&m=4122303&g=4122308#m4122308Getting a serious amount of anxiety, then the next day getting a boost in energy sounds exactly like Babesia to me.
Babesia and Anxiety/Depression go hand in hand big time! And if you have both borrelia and babesia, these two can really hammer your thyroid and testosterone.
Do you have anymore symptoms? Hot/cold sensations, night sweats, heart racing, nervousness, fear, insomnia, air hunger, can’t focus or think, bone crushing fatigue one day then energy the next day, and inflammation in wrists, hands, ankles and feet.
Some of these symptoms can be mild and very hard to notice because you're young and have a strong immune system, but believe me, they are there. And even though I had Babesia for 8 years, things like night sweats never really showed up until I started targetting Babesia with heavy antiparasitic drugs like coartem and primaquine.
Make sure you read these two links of Babesia symptoms... And just so you know, the majority of Lyme Patients are contracting 2 or 3 of these pathogens when they get bit by a tick these days. It's never just Borrelia anymore, that's why the top LLMDs like Dr. J refer to chronic lyme as the 3 Bs: Borrelia, Babesia, Bartonella.
"Bartonella and Babesia Symptom Checklists"
https://www.prohealth.com/library/bartonella-and-babesia-symptom-checklists-41096"A Deep Look at the Symptoms of Six Major Lyme-Related Infections"
https://www.prohealth.com/library/a-deep-look-at-the-symptoms-of-six-major-lyme-related-infections-41139My personal feeling is don't get too side tracked with mold, your genetics, autoimmune, mast cell activation disorder, parasites, and all the other crap the lower level LLMDs and Naturopaths/Herbalists get so concerned with. Listen and concentrate what the top LLMDs are using for treatment these days, which is targetting biofilms with supplements like stevia or xylitol or lactoferrin or oregano oil. Targetting the persistent infection with persister cell drugs like Dapsone. And really good babesia coinfection drugs and herbs like Coartem or A-Bab, CSA Formula.
Before you know it, you'll have blown tons of money on all this other treatment, 2-4 years have passed and you're still not better. Time and treatment is very valuable with chronic lyme and quicker you start targeting the source of the problem, quicker you will recover. Now don't get me wrong, going on a dieting(gluten free/low carb), working out, avoiding mold, and other things are important with progressing in treatment, but if you dont treat the infection, you'll never get better.
Personally, if your Doctor is claiming to be Lyme Literate and is just treating symptoms in the early stages rather than the infection, I'd run the other way, but that's just me. Read what some of the veteran Lyme patients are saying over on LymeNet.org like TF. Everyone and their Mom claims to be Lyme Literate, but they are not!!!
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/135810TF on LymeNet.org said...
The message is that every Tom, Dick, and Harry will say that they treat lyme disease. That is not what you want.
Since lyme docs are free to treat lyme however they want (just herbs, low doses of antibiotics, whatever they have found that helps, etc.) it pays to always check out a lyme doc thoroughly before selecting him. Saves lots of money and time. (That first appointment is usually VERY expensive.)
New lyme patients often make a poor choice for their first lyme doctor. So, learn as much as you can about the lyme specialists in your area. The best is one who sees only lyme patients all day long. This helps them develop more expertise.
Just being ILADS is not enough. Some docs say that because they know it will attract patients.
You want to know all you can possibly know about a doc before laying out the big bucks and following his treatment plan. Many doctors treat lyme, but VERY few have ever cured a person of it. Your job is to find one of those few.
The doc is the KEY to getting rid of this disease. I can't emphasize that enough. You can waste a lot of time and money on lyme doctors if you don't do a lot of research in advance.
A true lyme specialist (who treats only lyme disease) will usually have an extensive webpage talking about lyme. Some have written books on the subject.
If the doc's webpage lists 20 medical conditions that he specializes in, that is generally a bad sign. And, anyone who takes insurance is usually not very good.
Lyme is VERY difficult to cure for an average lyme doctor. You have to get to someone good. People have told me that in their lyme support group they know no one who has been cured.
Also if you want, listen to what one of the best Lyme Literate Doctors in the history of Lyme uses when starting of with treating Chronic Lyme
https://vimeo.com/306846706Dr. B recommends starting off with... 1000mg Amoxy 3x a day, recommended Doxy 400-600mg a day! 300mg of Doxy a day fails 100% of the time
Here's some forum discussion on that video
https://www.healingwell.com/community/default.aspx?f=30&m=4095701And don't be afraid to use the search box on veteran forums like LymeNet.org and even HealingWell.com. Chances are you can learn a lot more by just making a search, listening to what veteran forum members are saying, rather than just making a new post and waiting for answers.
Post Edited (Charlie55) : 6/9/2019 7:52:01 PM (GMT-6)