I've had a terrible week...

Well, after having gone through what I did (as I was a lot worse off after abx use), you know I have to say that the herbs work very well without the abx - but, that they are just like the abx in that there is a lot of trail and error on what will work for each person.

Let's just pick on one herb right now - Houttuynia. It put me on my arse for 3 weeks at 1/2 strength and only 1/2 doses. Others have had no reaction at all, although most find it to hit pretty hard.

I liked the Chronic Tonic as it has 11 different herbs in it, and each one plays a specific role in either killing the bacteria, or helping the body to deal with the die off or to help with some other aspect of having Lyme, like the wormwood for parasites. But that doesn't meant that it will work for everyone - and something like that likely will never be tested in a lab to find out much about it- so it's trail and error.

When I realized that - back in 2007- the LLMD's were "just guessing" at what worked and what to do, I figured I couldn't do much worse - LOL!! I have had an special interest in medical stuff most of my life, since I spent it in and out of doc's offices. I had a relatively intelligent mind, so why not, right? LOL! I didn't feel like I had a lot to loose since I couldn't use abx - but I surely don't recommend doing it for those reasons!! I'm only explaining my reasons. It was different just 5 years ago, we've had a lot of studies done and information revealed since the time I went through that.

You should know that I have only been able to piece together my history by looking backwards - no one had a clue when I was going through all of that back when I started with severe symptoms - in 1970. I had the more rare version of RMSF without the rash - but I had all the other symptoms. I got strong abx soon enough so that my life wasn't in danger, but it wasn't long enough to clear the infection. Shortly after that, I started having pink eye, tonsillitis, and other infections so much that I barely 'graduated' to the next grade in school for 3 years running because I had missed so much school.

Ha ha ha!! NO! I would never do my own ear tacks! Not because they hurt, but where they are to be place in order to do what you wish them to do is very, very precise. If they are not place exactly in the right spot, it doesn't work. I had a very highly intuitive acupuncture doc that I adored. She worked magic with my body with the acupuncture. Migraines of the worst type, the super stiff & painful neck, severe intestinal cramps, Bartonella leg/foot pains - she took care of it all with her acupuncture. She was the same person that was the Master in Traditional Chinese Medicine and Master Western Herbalist as well - so I was in a unique situation to be able to heal with her - and I'm not sure I could have with by any other means to be truthful. I wish she hadn't needed to move away!!

So there's no way for me to know when exactly I was infected with each infection - I only know that I don't remember a time where I thought "when did that start", as my symptoms had always been with me, they just varied in severity and I had to learn to 'live around' my symptoms. I was bed ridden several times for unknown issues, and of course, I didn't have many who believed in me since normally I was super active with horses and track and school.

From what I can understand (typical Dr's handwriting!! ), the Dang Gui Si Ni San was mainly for increased circulation - but I can't be sure because I don't understand Chinese Medicine very well. My hands and feet were always icy cold. Everyone commented if they touched my hands. Every part of my body needed extra support, as I had gone so long with these infections, nothing wanted to work right - and I had had several organs removed by then because they had failed/were failing in one way or another (appendix, Gall bladder, female parts).

We didn't know what had happened to my knee when I was a Junior in HS - but I couldn't sleep, couldn't eat or do any school because of the pain I was in. My doc scheduled surgery right away assuming that I had torn something. He told us that it was the healthiest knee he had ever operated on -but I remained in knee brace daily for a full year after the surgery due to the pain levels. It wasn't until I knew I had Lyme that I connected the severe pain I had in my knees when I was around 9 with what I was now dealing with.

I just used "Natures Bounty" brand of green tea. Drinking it as a tea made me nauseous, so I knew I needed to use the caps. It wasn't very popular in my area, and I wasn't ordering things online at that point in my life, so I stuck with what I could find in my local health food store - which is pretty small as we live in a very rural area. The "big city" for me is only 10,000 people.

I used herbs the second time around because I had no desire to repeat the first experience with them when treating these infections. I know that I might not have had those issues, but it was safer to assume that it was due to the detoxing issues that I deal with and so stick with what I knew already worked. And 3 weeks into my treatment, I was super duper glad I choose herbs!! LOL! When the herxing set in, I was still pretty miserable! I really don't see a time when I'd use abx for these infections, to be honest - although I do have to admit I'm hoping to never having to deal with them again!!! LOL!

I surely don't envy your situation. At least I was just dealing with my own body, not trying to figure out how to best treat my children. Hang in there and I hope that I've been able to help in one way or another.

LMC:

THinks are getting better, but slowly--my son has been seizure free for 3+ months and that is a big accomplishment :)
I'm glad Andrew is back to school, even PT. Baby steps :).

Is it IV Rocephin that A is on? I think our school would have been ok, if the docs would have backed us up. But son is still in pain, and this is the best thing to do for now. I would rather have him at home and not push him to go to school if his legs are hurting.

I used antibiotics to heal myself, but the problem is they are dangerous--make no mistake about it, and you can see how many problems members on here have from them! Plus the fillers! THey have mercury or alluminum in them, and that is the part I don't want. So if I decide to use them, it will be short term.  Every med comes with a risk.  There are over 100,000 people per year that die from prescribed meds when used exactly as directed--I think that is a pretty scary number!

So, you are going to have 2 on treatment soon! Tough! Did your other son test negative through Igenex or another lab?

I am not giving my son any herbs--he has been on abx 2 times for different issues.  He's been on abx in Dec, Jan, Feb, and March--he just finished the last dose yersterday.

And there are plenty of people that end up in the hospital from abx, too--Not just from self lyme treatment! We have plenty of testimonies here on the boards with people that ended up in the hospital after followed strict LLMD protocols.  IHD and Babana's mom are 2 such members. 

The herbs are for my daughter and I am only using a couple that I rotate or mix together. She has tested negative just like my son, but she never had a rash; she has been complaining for 4 years of leg pain! We took her to Children's hosp ID dr and he ridiculed both of us that she is making it up! She never forgot that day--she was 5 years old! Problem is there is hard to find docs that treat without a + test and just as hard to get a doc to treat children. Now she is complaining of crawling aunts on her body and that is why I started the tea, which in no way should harm her! We all drink it (minus my older son since he was on abx) and we don't have a reaction to it--except her. Echinacea is perfectly safe and it has been used in Europe and other parts of the world long before US even existed as we know it today :)  There may be months until I get a + test for her, as she may have been infected in Europe and her tests may never turn + here in US, no matter what lab I use.  Since she has symptoms, and they worsened, I really can't leave her like this, until the docs sort it out, if they ever do.  WIthout the rash, a history of a tick bite, or a + test, it is harder to find docs and even harder to find docs that will treat children, since most treat adults.

Thanks for your prayers and thoughts and may God have mercy on all our suffering children as well as their parents and suffering people everywhere.

Post Edited (Simela1) : 3/5/2015 12:35:41 AM (GMT-7)

I worry about the length of my posts sometimes as I know that those with certain Neuro issues have trouble reading my really long posts like that! I'm soo sorry to anyone that is having trouble - I try to break up the posts so that they are a little bit easier to get through!

"What is the role of the "Thistle" in the Chronic Tonic mix you were using?"

Well, in the Chronic Tonic, there is no thistle, but there is Thyme and Teasel.
Teasel (be sure it's Dipsacus sylvestris) Here is what Buhner says about Teasel:
"Teasel root does generally help with arthritic inflammations; it sometimes helps those with the disease itself though from my experience this is pretty hit and miss. Some people do respond to low dose teasel tincture, many do not.

I generally start people off at the 3 drop dosage but if after a week there is no improvement I up the dose and continue to do so for a month or so. My preferred dosages for most herbs are high and I think that up to 1 tsp of teasel 3x daily is fine for most people and often the higher dose is necessary.

You might also have GI tract lyme in which case I would highly suggest the use of grapefruit seed extract for a week or two to see how you respond while at the same time taking something like Pepto Bismol as the lyme spirochetes are very sensitive to bismuth." (interesting point about Bismuth!!)
www.buhnerhealinglyme.com/herbs/teasel-root-tincture/

Thyme:
http://naturalsociety.com/health-benefits-of-thyme-medicinal-herb/#ixzz3TXXcgAJW

"The volatile essential oils in thyme are packed with anti-septic, anti-viral, anti-rheumatic, anti-parasitic and anti-fungal properties, which explains why thyme-based formulas are used as an expectorant, diuretic, fungicide and antibiotic.

Thyme is also a powerful detoxifying agent, making it one of many liver detox foods. What’s more, the herb is a great immune system booster that encourages white blood cell formation while increasing resistance to foreign organisms."

There is a ton of information on the medical benefits of these two herbs online. If that's not what you were looking for, please let me know!!

Naturopathic licensing differs in some states and what they can do differs greatly in some states, so be sure to check. Here in Arkansas, they can't write prescriptions, can't order blood tests, can't admit anyone to the hospital, or much else to be honest, but many people still choose to use one due to the way they see the body and the approach they use to heal it.

So if you choose to use a ND, be sure that they belong to a Professional group like the AANP - American Assoc. of Naturopathic Practitioners. They require their members to:

"attends a four-year, graduate-level naturopathic medical school and is educated in all of the same basic sciences as an MD, but also studies holistic and nontoxic approaches to therapy with a strong emphasis on disease prevention and optimizing wellness.

In addition to a standard medical curriculum, the naturopathic physician also studies clinical nutrition, homeopathic medicine, botanical medicine, psychology, and counseling. A naturopathic physician takes rigorous professional board exams so that he or she may be licensed by a state or jurisdiction as a primary care general practice physician."

www.naturopathic.org/education If you go to that site, they have a listing of ND's to help you find one.

And just don't get me started on the "First do no harm" when they turn you away with full blown Lyme symptoms, or the 'It's okay, huuunny (spelled that way on purpose), if you just take these pills (Xanax) you'll feel better, I promise" - and the look they get from me makes them unintentionally back up two steps...... I could really go on a good loooong rant on that one!!!

And having grown up with these infections, I can sure appreciate that you are watching out for what the doc's are saying to your kids!! I didn't have that and it messed with me. That's why I went so long without treatment, not only because of their ignorance at the time, but I got tired of being talked down to and being treated that way - so I quit going to docs unless I had severe issues.

And just to be clear - I DO NOT advocate that people should go off on their own and 'just guess' at what they should be doing and taking to treat these infections!!! This is for those that can't get treated for one reason or another and are left with no other choices.

A well trained, experienced LLMD won't have to find ways to deal with someone hitting a plateau, or herxing badly or a number of other issues that can come up while treating these infections, they will take steps to keep them from happening and if they do happen, know what to do to counteract it. But we don't always have the choice of having a well trained, experienced LLMD to treat us or our children. One day we will, but for now, it's us sticking together, reaching out and sharing what worked for us and the research that we've done that will help us, and others to heal.

Whew. done.

Oh no! don't assume that because I'm using it, it's good for something!! LOL!! Who knows what I'll be using next!! Giggle!

Actually I make a pretty mean yard salad that you could try! It's literally what it sounds like, but my yard has dandelions, chicory, chickweed, and some other yummy salad goodies!! Hubby always gets this weird look on his face when I tell him it's a yard salad - I think he would like a different name for it!

I don't blame you one bit, just thought we had better clarify about not self diagnosing and self treatment - it really isn't the best choice most of the time, unless you are in certain situations where you don't have much choice otherwise!

Please do let us know what your LLMD has to say about treating your son - but know that you are quite capable if he says no!

I have found that I rarely agree with what the LLMD's are doing - save Dr. H and he really surprised me!! LOL! There is only a couple of others that I have appreciated how they approach these infections and treating them, but here I am, just a lowly patient who has to go to them to get treatments, so no wonder they don't appreciate me much!! LOL!

It's actually pretty funny, as I'm all of 5'1" and look "innocent" (ha ha ha!!) enough to most people, but my looks deceive!!! When I know that they won't agree with me, I come armed with print outs of information to give to them. It's no longer my word against theirs that way......and I rarely go to hubby's appts with him!! LOL!! He prefers I stay home most of the time! Giggle!

Yes, herbs can modify the test results as they are abx as well and the tests are all looking for antibodies that are being produced. By using herbs or pharma abx for a while and then stopping them, it seem to "jump start" the antibody production and people get more positive test results - if it can be provoked for that person. It took a very long time for this to happen with me, but - well, you know. I'm a strange case.

And thank you!! I like being your pal!! I usually do feel like I'm just sharing with friends here!!

LOL!! You may be right about that!! Oh the stories I could tell!!! Giggle!!! Those doc have got to stop thinking we are all idiots and won't look this stuff up and educate ourselves!

Actually, it wasn't the LLMD that did any testing on me - it was the doctor who I finally became a patient of and then again 6 months later. I was tested in 2007 and in 2008 and I came back positive for Lyme and RMSF.

I was first called "Abby" (for Abby-normal) by a doc when I was 14, and of course, everyone around me has always teased me about being anything but 'normal', so I never think of myself that way any more. LOL!!

No - you cannot allow your kids to be in that kind of pain just for some stupid test that only catches around 50% of those that have these infections anyway!! And that's the WB - the ELISA only catches around 30% of those that are actually infected. And as you know, the longer the person goes with these infections, the more suppressed their immune system is and the less antibodies that are produced.

Both the ELISA and the WB look for antibodies, but the WB is more sensitive and accurate - but that's only for a few* of the over 100 strains that we know cause human illness!!! Combine that with the issues for looking for antibodies to begin with and it's no wonder so few actually test positive.

*4 - 5 strains at Igenex, 2 or 3 at Labcorp & Quest, but they don't use the right testing medium either - only Igenex does.

Hopefully your LLMD will see the sense in treating them, otherwise I would just treat with either a NP or on my own with herbs, as they can't be allowed to grow up this way. Take my word for it, it's not good.

Be sure to let us all know how things go as soon as you have the time!!!

Thanks, T!

"I was tested in 2007 and in 2008 and I came back positive for Lyme and RMSF."

OK, so in 2007 you were negative but in 2008, you were positive? In that case, that is clear indication!

The LLMD said that since my son had Cefdinir for 10 days that he just finished last week, it's ok to do the test now. He gave me the option to wait, but without any kind of treatment, I am concerned the seizures may come back. In your case, the detox stopped the seizures, but in his case, the abx stopped the seizures, so I went ahead today and agreed to do Lyme and Barto test, since the LLMD agrees my son likely has both.

And now the waiting game... He said he will have the results in about 3 weeks (possibly sooner for Lyme)...

He said if we decide later he may have babesia, we will deal with it then...

He won't treat my younger daughter but he may treat my older daughter. I will just wait and see how the tests turn out for my son and then decide. In the mean time, I will just work to strenghten their immune system, since the girls are in better shape then my son. Maybe the herbs will help them and I won't even need a LLMD.

My sister met someone and he treated for Lyme for 2 years with abx and he is still not feeling well. She described him as "very fragile".  So, no one can be sure the abx are THE answer for them, and why not just try herbs first?

________________________
Zazs:

Thank you! Yes, there was an article about lyme patients becoming allergic to meat, so you are right, I just forgot about that.

My older daughter may have been infected in Europe, but the more I thought about it, my son was infected here for sure, because he hasn't been in Europe for 4 years prior to the rash. It is possible he got infected in Europe also, but he was infected here 100%.

With my older daughter is hard to tell, she has been having mild symptoms for a long time, so it could have been Europe or US or both. We used to climb in the wilderness all kinds of prestine areas around here, I just had no clue back then about Lyme and co and never checked for ticks on their body. I loved hicking and we used to go to areas in the forests where no one else would go, you couldn't even find people around, I just never knew about ticks.

Thank you!

Post Edited (Simela1) : 3/9/2015 3:09:47 PM (GMT-6)

Yes, T! He agrees, but if the tests will be negative, he won't treat my son, and that will be another dead end. All I can do is wait! So much for Lyme being a clinical diagnoses! But at least I have the propolis that helps them much more than any doctor helped them so far :). So sick and tired of waiting!

I feel much better today about the whole thing. I am not nervous about the test. Whatever will be, will be! The sun is out and we went to the park for a little while. I guess spring will make us feel better just by being here :)

Yes, if he won't treat my son, I will have to do the herbs and become a success story using herbs, rather than abx, just like you, eh ?

I know they are not making it up! My oldest daughter didn't take the propolis today because my son was having a fit--his computer wasn't working and he needed to get on for his class. So she left to school without taking anything for pain today. She was a mess when she came back: Sore throat, pain in ankles, headache and nausea. No way she would make this up--she loves the park and she would have been on the monkey bars until she got blisters on her palms--which happens quite often! This time she was sitting down on the bench because she felt so ill! I gave her the propolis now and she should be ok in a few minutes. Later I will do some detox, too.

I beat those nasty bugs with the help of a LLMD, but if we can't find a LLMD this time to treat them, I know my kids will beat it too, with or without a LLMD :)

Post Edited (Simela1) : 3/11/2015 2:34:51 PM (GMT-6)

Simela1 said...
zasz:
My son got the classic Bulls' eye rash in August 2013. Strangelly enough, he also so a pulmonologist that day and he was diagnosed with allergies to pollen, dust, cat hair, conjuctivities, chronic sinus infection, renithis.

ALL on the same day! So, how can someone develop all this problems at the same time, and then continue to develp new problems, if he was perfectly heathy before, for the first 9 years of his life?

Its possible he had the allergies all his life, but it was such a silent or a benign issue that it dint bother his life, an infection, like lyme or other infections will make allergies worst. She can take antihistamine for her allergies if she hasnt though, just avoid the 1st generation, older ones if possible, like diphenhydramine, which have nasty side effects.in addition to your other treatments if they dont interact with your other medications. theres actually 2 species in europe that can cause lyme like disease.
in westernized countries allergies seems to be more common than in populations that havnt developed "clean" infastructure. i saw an episode of mosnters inside me, how this guy purposely infected/infested himself with a "whipworm" or other worm parasite, it eliminated most of his allergies. This area needs more research.
@traveler, they dispute other alternative lyme testing, yet i cannot find any evidence if they dispute with scientific results, such as doing the same tests used by some other companies to see if they are verifiable.

Hey, I saw you are in PA and I don't know what cyber school you have your child enrolled in, but after I got asked to leave my school (aka they took me out of my classes without my knowledge and told me after the fact) I went to PA Leadership Charter school. This was for high school but they have grades K-12. The teachers and counselors were extremely helpful and you didn't have a set amount of time you needed to be online you just needed to log in everyday and get your work done by the due dates. This made it really easy for me because I could work ahead on days that I felt decent and then log in and not do any work on really bad days. I also let them know up front about my health problems and as long as I emailed the teachers a lot of them were willing to except late assignments for me. I ended up learning a lot more than I ever learned at my brick and mortar school. I still preferred going to school, but under the circumstances I couldn't have asked for anything better. Feel free to email me if you have any questions about the school.