Discussion in 'Sports & Outdoor Adventure' started by Quadman2, May 29, 2017.
You've opened yet another portal with your share.
Willy Burgdorfer, the renown Lyme researcher who discovered the Borrelia Burgdorferi bacteria, stated he was might have been infected with Lyme eventually died of "complications" Parkinson's disease.
"In fact Burgdorf thought it possible that he himself might have contracted the disease when he contracted an eye infection after washing out the cages of laboratory rabbits that had been infected with it. Two weeks later he broke out with what looked like the typical Lyme’s “bullseye” skin rash and was given antibiotics. But he admitted that he could not be sure that it was beaten: “Who is there to prove that I had it or that I did not have?” he asked in 1991. “I just hope that if I had it, that it’s gone and that one morning I don’t wake up and find I can’t walk anymore. Where does the bug go? How does it behave? What causes the symptoms? How does it relate to the immune system? We don’t know. It’s all still up in the air.”
Burgdorfer’s first wife, Dale, died in 2005. He is survived by his second wife, Lois, and by two sons.
Willy Burgdorfer, born June 27 1925, died November 17 2014"
Thanks for the post above btw my appointment got cancelled today as he had an emergency with a patient, I go Friday now.
You say you've been seeing your doctor for five years.
At any time did your doctor ever send your blood in for testing, especially at a lab the caliber of IgeneX in Palo Alto, Ca?
If you feel up to it, could you please list the treatments you've been getting?
Yes I have sent my blood out to be tested and it's very expensive. My doctor only uses One test for co infections ( in California) its 700 dollars as they are not very reliable. He uses them more to confirm suspicions he has. My memory is so bad I don't know the name of it I am sorry. I take meds everyday and most of the time have to look at the bottle. For summer I take or am now taking hydroxychloroquine 200 mgx2 and clarithromycin 500 mg x2 day
Other times less sunny months minocycline 100 mg x2 doxycycline 500 mg x 2. For over 9-10 months we treated co-infections as aggressively as possible. My doctor told me I would feel like crap and he said no you would really feel like crap and boy did I.
It was truly a nightmare for a long time but I did feel a little better after about 6 months and the treatment seemed to lever off. It was a combination of antiviral drugs and drugs used to treat malaria. One of the first malaria meds used was this yellow liquid that after three weeks I was literally at a point of insanity my doctor had not heard of the problems I had but we are all different. Sorry I don't remember what is was and do not want to. It was a scary and dark time that got better as soon as I stopped but was replaced with another that I don't care to take again but I will if need as it did help some. This I was I took June last year until April this year
These were not small pills. One of them would make you (me) have diarrhea about two hours after taking it. You had to be near a bathroom as it was coming and there wasn't anything your gonna do about it. And again about 2o min later. It gave you about a 4 min warning and you better be on the John. No butt clenching was stopping it. Sorry I can remember the names, I know one was bactrim, oh and ceftin, I think. I will try to remember. Some days I couldn't even stand the thought of taking them ( and didn't) as just the thought of them and what they might do to me for such a long period was terrifying. This was the most aggressive treatment fir co - infections and it helped some which is a lot. When you go from 25 percent of feeling normal to maybe, 40-45 percent of feeling normal it's a good thing. But it was a horrific experience to say the least. The when you get a relapse as I had for a few days Friday-Monday it hard and very disappointing. But that is Lyme. Every single day is different.
And it happens often. Oh one of them was some something cloroquine
Thanks for taking the time, NH.
You didn't mention the degree to which the test came back and determined as positive or negative.
Besides the drugs has your Lyme doctor offered any advice, treatment or dietary/nutritional advice to address your compromised immune system and energy levels?
I used to sleep on a straw tick
It's too bad but it seems the film makers would rather make money than spread the word.
Any other venues?
again I cant remember specifics but i do know it came back positive for a couple of co-infections which only showed what we already knew. This test is a something- fish test and at best has a 80 percent accuracy rate. Other tests are out there but only have a 30 percent accuracy rate and my doctor does not recommend them. I see my doctors costantly, primary care, lyme doc, cardiologist, and my medical Psychologist.
I am constantly getting blood tests checking my levels and I take vitamin d, B stress tabs and probiotics although i do not suffer from any digestive issues. I can take wads of drugs on an empty stomach and it doesn't bother me in the least. Sure I could probably eat a little better like most of us.
What the doctor above doesn't say is some people do not get better no matter what they try and i know many that have tried every alternate therapy and have been sick 20 plus years. I am going to ask my doc about the ozone therapy discussed above and see what he says about it.
I feel lack of sleep is a serious issue as well. I personally have only slept well a couple times in five years I wake up constantly during the night and have tried everything including meds that would knock people out for a long time with no real success except for feeling even worse in the morning. you cannot imagine what it is like to feel exactly the same when you wake up as when you went to bed, day after day, year after year it is quite maddening.
What people do not realize is the beyond your wildest imagination mind games this disease brings. I have had cancer when i was 19, massive heart attack at 36 and another one ten years later and fought with a pit-bull for my life that tried to bite my face off.(got some of it along with other parts) All that is piddley stuff compared to what I get with lyme disease. Its a major head trip as you cant think straight, have lost all touch with what feel good is like and who you are, nobody helps you cause you look fine. if you are as sick as me you will watch everything you worked for disappear. (fortunately I paid off my house when I was sick in case I didn't get better)(lymies don't have money generally)
It doesn't bother me to say, at least once a day I find myself in tears at the sheer lunacy of it. (it can pop up in mere seconds) you might think the pain and horror of almost dying twice would be about as close to rock bottom as one could get. I can assure you and am constantly blown away that there are in fact many many, many, many deeper levels to the worst you can feel and I hope you all reading this never have to go there; so please everyone be safe and watch yourselves and your children. for those that have a problem with deet and chemicals in bug spray well i will just say its been around for along time and worrying about Deet is nothing compared to getting sick.
BTW i am not looking for sympathy when I speak in strong language about what I go thru. My words are true and not exaggerated for a reason, and that reason is for people to not want to be me and do their best to protect themselves. I am fortunate in my state I have support. many states do not have any good doctors or services and a lot of you live in those states. I hear it from other sick people all the time across the US and Canada.
Good night and be safe!
NH has nailed a lot of truths in his last post.
Having done just a bit of homework into the workings of this bacteria this day, it does seem to have an inner intelligence all of its own and changing as it feeds on various animal hosts creating secondary havoc that makes other damaging pathogens minor league.
Most bacteria needs iron to survive as does most other earth life forms, but this one can even exist with magnesium.
Its very structure is such it seems of have a double wall to protect itself, and in turn effects the auto immune sys even after its presence is deemed gone! (the "ghost effect) This in turn causes more self inflicting damage.
As already indicated, several ill effects can result, as now a multitude of other body functions can be involved...respiratory, circulatory, neurone, bone...you name it! These are the co-infections mentioned.
After reading only a bit on this "bad boy", it makes the cancer cell look like a simpleton without teeth!
And, I guess after gov't's sit around the table in the various committees, discussing plans of attack, if needed, some action will take place.
If not now? When?
Great post. He is correct about the shell and the spirochete also hide in the lining or red blood cells which is a double whammy. These critters are actively trying to kill you. (Out of my doctors mouth) people do die from it. From what I understand if it gets into your brain your done. A lot or the treatment are aimed at breaking down the barrier of the spirochete so the body can attack it but it's difficult as it hides when it is attacked. Bee venom is used by some which helps break down this barrier. I was at a support group and a women was telling us how you work up to 10 bee stings 5 on each side of the spine twice a month. It did not sound fun as she would be in pain for days but she did say she was feeling better. I'm not sure how she's doing now as I only went a few times as it was really depressing seeing how bad people were after dealing with this for 15/20 years.
You say you take some vitamins, has your doctor performed any tests for nutritional deficiencies?
It's wonderful you are able to access and have the support of a Lyme savvy community.
Utilize it, step by step no matter how small, until you end up on top.
It is a 501(c) (3) educational non-profit group dedicated to spreading the word about Lyme. Any contribution is tax-deductible.
Yes as stated above I am constantly get my blood checked. ( every two months or so)
Two pieces of good news:
1. A lyme infected tick needs to be "embedded" for 24 hours in order to spread the disease. So if you get 'em early you're pretty safe.
2. Permathrin on your clothing is an insecticide that KILLS ticks. It is cheap and lasts through many trips through the washing machine. All of my outdoor clothing is treated with it. Especially socks. If they have to climb up my socks to get to my leg, they are a dead tick walking...
It's cheap at amazon, and you need to get the kind that is not petrolium based so it doesn't ruin your clothing.
Oh, and it is poisonous to cats. For me, that is a good thing, but YMMV.
In all seriousness, thanks to the internet, GP doctors are next to worthless these days, other than to set a broken bone.
So just curious, they have just been prescribing the antibiotics and antiviral meds? No anti-inflammatory or detox protocols for your
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