Hey there bluesky!! Below is my welcome letter... you may have seen it already, but here it is for you. Glad you posted!
Welcome! We are so glad you are on the right path! And that you found us here as well.
We will always be a support for you, even if no one else knows what you're going through... we do. And we will lend a hand or a hug anytime we can.
Ask your questions!
If you don't have a Lyme Literate Medical Doctor or Natural Doctor (LLMD/LLND) please go to the Doctor Request forum on this site (look at the top tabs) and request a LLMD in your area. Betty will PM you with info.
I also want to express my opinion and the opinion of nearly every Lyme doctor out there. The reason you need multiple antibiotics (abx for short) is because the Lyme bacteria is unique and stealth in its makeup.
It is a corkscrew shape, which is called a spirochete. It also can take other forms, the most prominent being the cyst form.
The Bb (short for Borrelia burgdorfei/the Lyme bacteria) gets hit with abx and it quickly goes into cyst form, thus not allowing the abx to eradicate them. This is one reason for other forms of abx, known as cyst-busters.
This has all been researched and documented. You can find YouTube videos to watch a spirochete go into cyst form within a few seconds.
They also form biofilms, which is like a fortified, protected city of loads of Bb and even other bugs, where traditional abx can't hit them.
What happens most of the time when people are dx'd (diagnosed) with Lyme by doctors other than LLMDs is that they kill a few Bb, and the rest are driven into cyst form.
The patient feels better after a short cycle of abx, and they feel they are cured. Only to discover that when they come off the abx, they begin to relapse.
Under Our Skin
Please, if you haven't yet, watch the documentary, Under Our Skin. You can find it on Netflix instant streaming or hulu.com for free.
It explains a lot of the reasoning for the plight of the Lyme patient. Very eye-opening.
Another thing to think about is your diet. I understand that some people eat whatever they want and feel it is ok, but there are serious reasons why a NO SUGAR diet is important.
1. When you are on abx for any period of time, you are wiping out all the good bacteria in your gut. This can lead to a problem that many Lymies have: Candida problems (yeast!) It can overtake your gut and then it causes more problems.
2. Bb thrive on sugar. And whether you feel good or bad after eating it, this is their main source and most easily-attainable energy source. Not feeding them is important.
Also, many people with Lyme are not able to tolerate gluten and/or dairy. This is different for many, but you may want to consider cutting these things out for a minimum of two weeks to see how you feel without them.
Then, try introducing these types of things, ONE AT A TIME, to see if you react or feel poorly after eating them.
You can do this!
Please understand that you are brand new to this illness, and there are many people who are willing to help and offer advice and such. We all have the same goal: wellness.
Try not to be overwhelmed. We have all been there.
Make sure you are taking a really strong pro-biotic (pro-bx), two to three hours after each abx dose as this will help to keep your intestinal system (gut) in balance and keep the yeasties under better control.
And we're talking in the 20-40 billion a day range (some take even more!), different strains are a good thing, too. I always load up when I find the good ones on sale. Best idea as they are expensive.
Florajen is a popular one. You can find it at Walgreens at the pharmacy. No prescription needed, but it's kept there in the fridge.
There is also the issue of detoxing regularly. Bb give off neurotoxins throughout their lives. When they are killed, they release everything in them, called endotoxins.
It's like a tiny atomic bomb going off every time one of them dies. These neurotoxins are one of the reasons we feel so sick. Nausea, headache, and flu-like symptoms are just a few ways we feel these endotoxins.
So when you kill them, you are bound to feel worse. This is called a Herxheimer reaction (or herx for short).
It was named from the guy who discovered it, which is why it's kind of a weird name. ￼
Detoxing is of utmost importance.
1.Epsom Salt baths are by far the most widely-used detox regimen. 2 C ES in the bath water. Soak for 20-30 minutes. It brings the toxins out of your body through your pores.
I also put 2 T freshly grated ginger in a tea ball and put that in the bath too, as ginger helps open the pores and increase blood flow. So more toxins can get the heck out. ￼
2. Drink water (lots!!!) with freshly squeezed lemon . Lemon also is a terrific detoxifier.
3. Take Milk thistle and Dandelion (comes in a capsule form, many times together in the same pill) every single day. This detoxes the liver, which is on overtime, with the meds and Bb and trying to keep the body's toxicity level in check.
A stressed liver is not good. So taking this every day is EXTREMELY important.
4. Taking Chlorophyll or Chlorella (the kind with broken cell walls) is also very important. It binds to the toxins that can be moving around in there, and ushers them out of your body.
If there isn't a good binder like this, once the toxins are in the intestines, they can be re-absorbed which won't help anything at all. I order mine from Swanson's.
5. Burbur is an all-over body de-toxifier. I got mine from NutraMedix/Natural Healthy Concepts online.
One last thing I want to tell you about here (I know this is a LOT of info, but these things I can't stress enough if you desire to be well). This would be co-infections (co-infx).
There are dozens of other bacteria/parasites/viruses that Lyme vectors (such as ticks) can carry, and many times, do carry. This is another reason why finding a LLMD is so important. They know about these things.
And sometimes when Lyme is being treated by itself, a patient doesn't get better because they have co-infx that are keeping them from healing.
Some of these are worse then the Lyme itself. I personally am fighting one called Babesia, which is a blood-born parasite.
The combo between Babs and Bb has given my a heart condition. Babs is also notorious for migraines, frontal headaches, heart palpitations, low-grade fevers, and many other things.
I also have Bartonella. This one can present itself with skin rashes/lesions that look red or white, and can look like a stretch mark or other form.
Painful bottoms of the feet, especially in the morning, low back pain, hip pain, severe thigh pain, low fevers, back of the head headaches, painful, stiff, sore, cracking neck...
There is also Ehrlichia, Anaplasma, Chlamydia Pneumonia, Mycoplasma, Rocky Mountain Spotted Fever, Relapsing Fever, and so many more!
I don't wish to sound "doomsday" about this, and it's not my goal to freak anyone out, but I also want to convey the severity of Lyme and it's co-infx (Lyme + Co.).
If left un- or under-treated, Lyme has been proven to lead to other debilitating things in some people, such as MS, ALS, CFS, Fibromyalgia, Alzheimer's, Lupus, and more.
This is definitely a huge reason you want a good LLMD on your side for. You can also visit www.ilads.org to learn so much more about the truth regarding Lyme Disease.
Also, please click here http://www.ilads.org/files/burrascano_0905.pdf to find an amazing paper--in its 15th edition--by Dr. Joe Burrascano, who is a true Lyme hero. (If you watch Under Our Skin, you will see him in there!) ￼
This paper, while LONG, is SO CRUCIAL to any Lyme patient. It's like a survival guide. It is a must read for all of us.
It explains, from a doctor's point of view, but in terms that are understood by the general public, the reasons for proper diet, different medications, and more, more, more.
I want everyone I ever meet to understand the truth about this disease. It has taken so many lives unnecessarily and severely reduced the quality of exponentially more.
I am here to do my best at offering facts and things I've learned over the course of my journey. PM me anytime. And make sure you read Burrascano's paper. I printed a copy off to keep with me, because it's so critical.
Thanks for the wonderful welcome. Feeling better already!
03/14/2012 03:35 AM
Posts: 32296 VIP Member
so glad you came online so you can get direct help vs. reading other people's situations that might be similar to your situation.
yes, we all have found out who our TRUE FRIENDS/FAMILY SUPPORTERS HAVE BEEN!
just avoid all the negative/NON-SUPPORTIVE ones including family; just tell them you have to be around positive people to get you thru this. either support me for what i'm going thru or we have to part ways.
you don't need downers.
have you filed for ssdi, ss disability work insurance benefits? in my welcome letter in my signature link is a link of 25-30 pages of detailed info from our joint experiences so you can WIN 1ST TIME, 1ST STEP using our advise.
took me 5 yrs. of hell to be approved on my 2nd claim since lawyer messed up on 1st one NOT sending a brief to APPEALS COUNCIL, last step, then he quit me 4 yrs. into this.
you need SUPPORTIVE DRS. and accurate medical records; do you have this??
have you worked 20 qtrs. in the last 10 yrs; 5 yrs. continuous work to make sure you are eligible.
it takes time to get your files together; SO PLEASE START THIS NOW; you're losing ssdi $$ the longer you wait ok.
thanks for the nice note above!! we look forward to talking to you more.
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