Calamber- May I ask which supplements are you on for detox?
The chelation was DMSA, and then I used lipoic acid when I became allergice to the sulfa in the DMSA.
I have had various somewhat sophisticated blood tests to determine what may not be functioning well, and I have a genetic (blood tested) predisposition not to eliminate mold well and later when he was chasing whether biofilms were bothering during potential die off and to pin point why I was so tired, he discovered other more complicated matters which is why the folic acid treatments.
I take citrus pectin by Thorne once a day (or should), and am also on 3 Methyl-Guard by Thorne which is a folate of L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid and Glucosamine Salt and B-12 as Methylcobalamin.
Also 5MTHF 1mg by Thorne which is just plain 1mg of methyltetrahydrofolate.
Additionally, I take Ashwaganda for energy and depression, 2 Magnesium Citramate to relax and ease body soreness, 5,000 units of Vitamin D, and also Fish Oil.
You have to take Vitamin D out here and I take a product from Eskimo, the fish oil is because nails were getting brittle and breaking
Because I am post-menopausal I take 2 Maca a day from a New Zealand company, product is Femmenessence. I no longer have hot flashes and I sleep well, finally.
Sounds like a lot, and it is, but it keeps me going. I am 57, I was mold poisoned, had through the roof mercury and lead poisoning, and have Lyme so I am not doing badly.
I should also mention that I have an infrared (cold) laser tool which I use on myself when the joints hurt, that helps immensely. That laser is from Microlight and is FDA approved only for carpal tunnel but is being widely used by therapists for a wide range of issues. I am becoming a certified dealer for them.
I neglected to mention that I received several months of treatment to detox from mold first which was Cholestyramine, usually a cholesterol drug and will not be paid for by most health insurances for use to detox from mold. It worked very well until I could no longer tolerate it but I was a different woman. Mold toxicity does also mimic symptoms of Lyme.
Thankfully CoolMeadows my doctor is very aware of Lyme and Rocky Mtn in VA - says she has had several cases of each in the short time she has been with this practice. I do believe she is on top of its existence, just not sure she is ready to tackle a patient who might be outside the box i.e. I didn’t get bitten and have a fever/rash and seek immediate treatment.
On that note - I know Doxy is the first line of treatment for Lyme but what dosage did you all take? And did you see any improvement while you were taking it or did that come after you finished treatment?
Do be careful with the sun. I burned the left side of my face just driving in the car for 4 hours.
Good luck. I’m another Lyme (Babesia and Bartonella too) survivor. You do need to make sure you are tested for coinfections.
Funny I was just wondering this morning about the sun while driving - we are going to pick up hay this weekend. Some of the strange things you think about while doing stalls @ 7 am!
[QUOTE=KnKShowmom;7260334]
Thankfully CoolMeadows my doctor is very aware of Lyme and Rocky Mtn in VA - says she has had several cases of each in the short time she has been with this practice. I do believe she is on top of its existence, just not sure she is ready to tackle a patient who might be outside the box i.e. I didn’t get bitten and have a fever/rash and seek immediate treatment.
On that note - I know Doxy is the first line of treatment for Lyme but what dosage did you all take? And did you see any improvement while you were taking it or did that come after you finished treatment?[/QUOTE]
This would not be the treatment for chronic Lyme.
I was diagnosed with Lyme a few years ago and getting to that diagnosis took about a week of testing - urine and blood. After that I got a stent put in my left upper arm for self-administered IV antibiotics every day for about 3 months. Then I was on four different antibiotics daily for another 3 months, and then back on a stent put in my left chest and more IV antibiotics… At some point it really got to me and started feeling like what I imagined chemotherapy would be like. You’re nauseated, tired, and just feel like crap the majority of the time! Anyway, more oral antibiotics after that for probably a total of two years of treatment before I said enough (and so did my insurance company). It probably took me about two weeks to sort of get back to normal and - knock on wood - I haven’t really had much in the way of Lyme symptoms since! Sure, it flares up every now and then, but it typically only lasts a day or so. I can live with it! My doctor was Sarah Fletcher in Sterling, VA who has Lyme herself - she’s also an event rider and understands why we horse people have tick problems! Good luck with your treatment!
[QUOTE=Calamber;7260651]
This would not be the treatment for chronic Lyme.[/QUOTE]
Right… and it’s awesome that your dr is on your side KnK, but if she’s with Centra or Carilion (especially Carilion), those systems stand by that chronic lyme doesn’t exist and so their doctors won’t (aren’t allowed to) treat for chronic, which is a different and frankly controversial treatment plan than the accepted prophylactic route.
Give the doc in Lexington a call, I bet she’d at least give some good advice. And a third to ask for coinfection
tests if that hasn’t happened. It’s amazing how many nasty things the bloodsuckers inject.
[QUOTE=CoolMeadows;7261450]
Right… and it’s awesome that your dr is on your side KnK, but if she’s with Centra or Carilion (especially Carilion), those systems stand by that chronic lyme doesn’t exist and so their doctors won’t (aren’t allowed to) treat for chronic, which is a different and frankly controversial treatment plan than the accepted prophylactic route.
Give the doc in Lexington a call, I bet she’d at least give some good advice. And a third to ask for coinfection
tests if that hasn’t happened. It’s amazing how many nasty things the bloodsuckers inject.[/QUOTE]
As for coinfections my doc said that one of the symptoms of Babesia infection is that you get drenched in sweat at night.
Lyme and associated diseases
[QUOTE=CoolMeadows;7261450]
Right… and it’s awesome that your dr is on your side KnK, but if she’s with Centra or Carilion (especially Carilion), those systems stand by that chronic lyme doesn’t exist and so their doctors won’t (aren’t allowed to) treat for chronic, which is a different and frankly controversial treatment plan than the accepted prophylactic route.
Give the doc in Lexington a call, I bet she’d at least give some good advice. And a third to ask for coinfection
tests if that hasn’t happened. It’s amazing how many nasty things the bloodsuckers inject.[/QUOTE]
As for coinfections my doc said that one of the symptoms of Babesia infection is you get drenched in sweat at night.
Sorry - woke up with a terrible headache…probably from being on the computer all week trying to figure all of this out!
So how is chronic Lyme classified - is it Lyme that does not respond to extended amounts of treatment (and how long would that be) or is it Lyme that goes untreated for an extended period of time?
And is there a test that can tell how long a person has been infected?
It seems that most of what I have read starts treatment @ 100mg Doxy 2x a day for 21 days (what I am on now) and then further treatment is dependent on the response from that. Retesting seems pointless as the immune system will have a response long after the infection is gone (or minimized) so I would assume continued treatment is symptom based?
On another note - Dr recommended that DD be tested too since she has been NQR for a while. Supposedly had a “mono like” virus a couple of years ago but hasn’t really ever been back to her old self since - didn’t even want to show her final junior year, which for her was a pretty big deal.
After seeing what symptoms could be attributed to Lyme I just figured it was worth a shot to finally get an answer to her issues. We will know on Monday what her test results are.
There are markers for chronic Lyme, needs someone who is familiar with the differences. For instance, I have had Lyme for some time, I have lots of Lyme positive markers but doctor said that he “lights up the board” with his positive markers which are more than I have, and that he does not suffer with Lyme. Please have you doctor contact Dr. Ross, or at least to go on the ILADS website and discuss this matter.
3 week Update -
Well, the good news is that I can see some improvements, even in things that I would not have associated with Lyme. My hands have stopped hurting and I can make a fist again and even with the cold, damp weather last week my knees and head did not bother me the way they have in the past. Will kinda miss my weather predicting capabilities - NOT! Most importantly, the need to take a nap every day at 2 has stopped and the mental fog has lifted - now to figure out where I have been and what I have done for all this time! 
I have finished round one of doxy and it went better than I would have expected - my stomach isn’t tolerate of much and there have been some severe waves of nausea but all in all wasn’t as bad as I would have thought. Had some killer headaches the first few days but they have gone thank goodness. Doctor has agreed that another 3 weeks would be a good idea so hope I can hold it together a bit longer.
On another note, DD’s test for Lyme was negative (which surprised me) but was positive for RMSF (which didn’t surprise me) so on the doxy she goes. The good news is I can give her some tips on when and how to take it which was trial and error for me the first week - she is a tiny bit of a DQ though so this should be interesting…she is also in her last two weeks of classes before exams so I am hoping she feels better quickly so she will be ready.
Did get some interesting looks from the pharmacist yesterday when I got 2 prescriptions for doxy, one for each of us - luckily I know the guy!
Thank you all for your tips and links to info - it was very helpful in tackling this and I have passed some of them on to my doctor too so hopefully it will help someone else.
Sounds like you didn’t know just how bad you felt till you started getting better. Horse people, eh? We go till we drop. Maybe your daughters symptoms have been related to RMSF. I hope you both keep getting better.
No kidding - my symptoms were never the slamdunkyouresick type, they just kind of snow balled until they suddenly got cardio/neuro type of scary along with some lymph node and weird abdominal pain and that’s why I finally went to the doctor.
DD on the other hand has been to the doctors and hospital several times over the last two years and no one could figure out what was going on until I got my diagnosis and called the doctor (who is new) to fill her in. DD’s symptoms were very much in line with RMSF right down to appendicitis like symptoms, which is what landed her in the hospital to start with but everyone kept thinking it was a mono like virus or an inner ear infection.
You never want to be a happy about a positive test but to finally have an answer is great and I just hope the meds help her feel better asap!
KNK, there are things you could be taking to support the dieoff periods. So glad to hear you are feeling better.
