posted
I've had Lyme for 20 years now. It took 6 to get diagnosised, and then I did 10 years of intense antibiotic and supplement RX. With so many medical Journals saying taking antibiotics long term was really a bad thing to do, I asked my LLMD about just Herbal and Vit.RX, since I hadn't herxed in over a year. I "thought" I had licked it,Ha,Ha! In Jan. I was on Antibiotics for a sinus infection and the Herx was incredible. I didn't want to give in and admit I needed to stay on antibiotic, so went back to the herbs and vit. Over the ensuing months my symtoms continued to spiral down. To the point that my body was nearly overcome by a massive septic reaction.(Temp 103) God Bless my local MD and my LLMD, working closely together they pulled me though the worst. I had been told to notify family and friends and ask to sign a DNR. If I sneezed, coughed, etc. I could have had an intracranial bleed and died on the spot. My Spleen had gobbled up most of my platlets and my White and Red Cells. My platlets were 2.24(norm is 155,000) My WBC was 2(norm 5-11) and I was anemic not sure of those levels. My reason for posting this is for anyone thinking they can out do this thing, PLEASE don't try it, LYME really can KILL! I'm on prednisone to suppress the spleen and build up my counts. Hopefully the spleen will kick back to normal function when I'm done. Also on IV Rocephrin, oral Biaxin and Malarone for B-Microti co infection. Is there anyone else out there having or had a simular experience?
-------------------- NancyD Posts: 4 | From Beaver Dams, NY 14812 | Registered: Jun 2004
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posted
Thank you for posting. This is a wake up call to people who think wimp alternative treatments are going to beat this devil. It can lie low for long periods, lull you into thinking you are the boss. Wrong.
Pulling for you. Sending best wishes.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
If I am reading your post correctly, you were off antibiotics for 4 years (except for the sinus infection this Jan.) -- is that right?
If you don't mind sharing -- what herbs were you taking and what were the doses?
Had you been previously treated for Babesia? Have always thought that was more likely to outright kill someone than Lyme. The anemia is usually babs related rather than Lyme related I think.
Glad you have a couple of docs who can help and hope you improve soon.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Nancy, some of us have problems reading a solid block of print, so I am splitting up your post.
My comments are at the end.
[quote I've had Lyme for 20 years now. It took 6 to get diagnosised, and then I did 10 years of intense antibiotic and supplement RX.
With so many medical Journals saying taking antibiotics long term was really a bad thing to do, I asked my LLMD about just Herbal and Vit.RX, since I hadn't herxed in over a year. I "thought" I had licked it,Ha,Ha!
In Jan. I was on Antibiotics for a sinus infection and the Herx was incredible. I didn't want to give in and admit I needed to stay on antibiotic, so went back to the herbs and vit.
Over the ensuing months my symtoms continued to spiral down. To the point that my body was nearly overcome by a massive septic reaction.(Temp 103)
God Bless my local MD and my LLMD, working closely together they pulled me though the worst.
I had been told to notify family and friends and ask to sign a DNR.
If I sneezed, coughed, etc. I could have had an intracranial bleed and died on the spot.
My Spleen had gobbled up most of my platlets and my White and Red Cells.
My platlets were 2.24(norm is 155,000) My WBC was 2(norm 5-11) and I was anemic not sure of those levels.
My reason for posting this is for anyone thinking they can out do this thing, PLEASE don't try it, LYME really can KILL!
I'm on prednisone to suppress the spleen and build up my counts. Hopefully the spleen will kick back to normal function when I'm done.
Also on IV Rocephrin, oral Biaxin and Malarone for B-Microti co infection.
Is there anyone else out there having or had a simular experience? [end quote]
Wow, you have been through a lot! I am glad you are on Rocephin while you are taking prednisone. Taken alone, steroids can really accellerate Lyme.
Maybe you should consider an alternative treatment to supplement your abx and herbs, like rifing, or ozone therapy, or ? Just a thought.
I think we have to hit Bb from every angle possible, and continue hitting it with something even after we think we're well.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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bettyg
Unregistered
posted
Nanny, thank you for taking the time to emphasize again for lyme can/does kill us! I'm so sorry for everything you went through and hope you now are making progress.
Ann, thanks so much for breaking it up so I could comprehend/read and reply to Nanny!
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posted
Sorry about 1st post so long. I'll try to break this up.
I was using bovine colustrum, grapefruitseed ext and olive leaf extract. Along with good quality supplements& antioxidants - green tea a must. Also Florence (Essiac Tea). Also Alpha lipoic acid, Acetyl-L-Carnitine,Ginkgo Biloba & Acidophilus.
My New RX includes these in addition to Serrapetase, Nutriferon.
We are reviewing Stephen Harrod Buhner's book "Healing Lyme". But at the moment want to stay with what is working and try not to muddy the picture any further.
I know what you mean about the steriods, even my MD who doesn't like to use them says they are a must right now. I was on them in the past and my Lyme got so bad I could barely move.
My family and husband have been great. For those that don't know , steriods accentuate the dominent part of you persoanlity. In my case I talk non-stop and constantly am on the move. Sometimes my husband will yell at me to "GO LAY DOWN!" I feel like the dog!
I used to post here fairly often, but then "decided" my Lyme was at least under control and I didn't need this support. WRONG!
-------------------- NancyD Posts: 4 | From Beaver Dams, NY 14812 | Registered: Jun 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Nancy,
That was quite a scare, and I'm just glad you've been able to get on a treatment program that is helping you again.
I'm not sure there's been enough research on these diseases to know what longterm effects there may be. To me, that's one of the scary aspects of all of it.
I guess the point is to do the best you can do stay vigilant even after you feel you might have licked this disease.
It's good to be reminded of that.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
It is very interesting you mention low platlets. You did not mention what you were officially diagnosed with. I will tell you prior to my Lyme diagnosis I had an episode of TTP, this is where the platlets go towards 0 and the red cells fragment.
This can cause both stokes and seizures as well as severe bleeding. I was in the hospital for 4 months receiving 30 pints of plasma a day. You are right it is very serious. Matter of fact 20 years ago TTP was a death sentence. I hope you are seeing a good Hemotologist, because they do need to identify the exact disorder.
I will tell you that the prednisone really damaged me, made what I now know as Lyme much much worse. Be very careful, one thing they will try to do is remove the spleen if they can not get the platlets under control. This could be a very serious mistake make sure you make a really careful informed decision if it comes to that.
I have talked with a number of ITP and TTP patients, it is interesting how their symptoms match Lyme patients. Matter of fact I have convinced a number of them to get Lyme tests and so far not one of them has tested negative for Lyme.
Just one more reason I belive that Lyme disease is a primary factor in most if not all auto-immune disorders. Email me if you want to talk I can give you a lot of info on what you are facing.
Posts: 533 | From Las Vegas, NV | Registered: Jun 2003
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posted
Hi Nancy, In fairness to herbal treatments I noticed that you were not taking any of the herbs known to combat spirochetes, ie. Cat's Claw, Artemesia Annua or Artemisinin, Sarsaparilla, and Teasel.
Also Garlic, and Silver are thought to have acitivity against most bacteria, including spirochetes, and both cross the brain barrier.
It may be that I'm an unusual case, but my health and test results have continued to improve (negative with IgeneX now) with Herbs and natural supplements only.
In additon to Lyme disease, the herbs we use cleared us of Morgellons whithin a very short time- less than 6 months. These same herbs worked for my wife as well.
I've not read 'Healing Lyme', but it seems the author recommends many of the same herbs that we have used for 2 years 3 months now.
The Colustrum does seem to have anti-spirochete activity, very much like Coconut milk. If there is a silver bullet, it has been Cat's Claw for us. The research with this herb is extensive and supports its use for Lyme disease.
Best Wishes for your continued recovery to good health.
Blue Skies...........John
Posts: 134 | From North Carolina | Registered: Sep 2004
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posted
I'm sorry, I didn't mention doses of the supplements I was taking. They are Grapefruit seed ext. 200 mg x 2/day, olive leaf 500mg x 2/day, I also used Colustrum unsure of dose 3 x/day. I was also using Cat's Claw and kyolic but ran out in the spring. With me being sick and the ensuring decrease in income I started eliminating things as I ran out. Dumb, I know but it happens! I'm interested to persure the recommendations in "Healing Lyme". Thanks for the information.
-------------------- NancyD Posts: 4 | From Beaver Dams, NY 14812 | Registered: Jun 2004
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