posted
This post may take a while to ready- but it will be worth it. I had to write this for all those who feel they are on their last breath, wishing to die, convinced they will not get better. I was there, but pulled through. It's not easy, it sucks-----but you will get your life back. I hope this helps you in your time of need..........you will kick the bugs *$%!!!!
I was diagnosed with lyme on Jan'08 after having it for at least since Oct '07. I was given doxi for 2 months by my pcp with minimal to no improvement and then nothing for 4 months. I then found a new doctor who I thought would really help. I was wrong. She helped a little at first and then put me on doxi for months & I steady got much worse. The whole time she was telling me it was a herx. I then found my current lyme doctor. He first put on on 3x the standard amount of doxy & did a peak/ trough blood test........he found my body absorbs a small trace amount of doxy- so for all this time the antibx were doing nothing. With this new doctor I ran the gambit of antibx, except for the PICC line. I have a 2 year old & refused the PICC- I did not want her pulling it & was afraid of infection. Instead I did many many many months of bicilin shots 3x per week. My only positives for blood test are lyme & mycoplasma. My MD is not concerned about the mycoplasma since I don't have any major symptonms for it & the antibx I took for lyme would treat myco too. My 2 naturopaths both have read lyme, babesia, bartonella & erlichea on there f-scans & vega machines. Before all of this I thought NDs were snake oil salesmen. I was wrong- they were just as, if not more important than my MD- depending on where in hell I was. I have used rife machines, herbals & finally the HPMP along with the antibx, and now only the HPMP. I found the HPMP to be my main weapon against these nasty bugs (I'll get into this more later).
Before I got lyme I went to the gym 5 days a week, weighed #215 @ 6 feet tall (not to toot my own horn but I was ripped & in great health). I am an architect who has won design competitions and again not to toot, but smart.
When this all hit here are my symptoms: first I thought I pulled a muscle in my back, then sharp shooting pains up my neck and down my arm. Then I really entered hell.......massive brain fog, felt I was not in reality, lost emotions/ feelings, horrible rage (I ripped 2 metal chairs apart with bare hands & told my own mother she would leave my house in a body bag), severe depression (suicidal--get this out of your head!!), visual distortion, light sensitivity, ears ringing, hearing sensitivity, horrible body aches- muscle, bone, joints, bottom of feet, always cold- my body temp dropped to 96F all the time, no sexual desire, horrible malaise, insomnia (I needed an rx to sleep all night), lack of energy, full body numbness, air starvation, horrible headaches, loss of taste, loss of all will & desire, really messed up & graphic dreams, spasms, problems with motor skills, severe cognitive issues, severe memory loss, general anxiety, and I could not go to stores/ public gatherings because I would get panic attacks..............Hell!!.............but again I'm 90% back 90% of the time!!
I recommend the following: find a good llmd for antibx, if possible find a naturopath- hopefully one who has rife and/ or vega. One of my NDs helped me tremendously with detox & detox is key when in herx mode. If you cannot find a doctor who uses rife- or even if you can I highly recommend reading the Rosner book. From there I learned about the HPMP. I got one & have been using it since July'10 & this has been the key to me getting over a huge lyme hump. I use the hpmp 5 days per week for +/- 1-1.5 hours a day. I have now been off antibx since 9/11/10. My llmd is ilads so he wants me to go on for the small & few lingering symptoms, but after reading the Rosner book I do not want to. I will kill the rest off with Rife & HPMP.
Also- find a reason to beat this down & live. I my darkest times I thought about my new born daughter, my wife....they are more important to me than myself. I was not going to loose, simply to be here for them. You need to find something in your life to need to beat lyme for....even if it's not simply to be consumed by these awful bugs. You're worth fighting for.
When I was really bad I had a famous pediatric llmd tell me I was ``fixable''. I kept this with me in my worse pain, worse brain issues & this pulled me through.
I'm here as proof we are fixable. If I help one person pull through this by reading this all my suffering was not for nothing.
Go kill some bugs & get your life back. If I did it so can you!!!!!
Posts: 11 | From Guilford, CT | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Guilford CT-lymer,
I can see that you must be better to be able to post such tight paragraphs. I have to break this up to read it. So, for those of us with still a lot of work to do, so that we can read this, here's your post with some text breaks: --------
Guilford CT-lymer writes:
This post may take a while to ready- but it will be worth it. I had to write this for all those who feel they are on their last breath, wishing to die, convinced they will not get better.
I was there, but pulled through. It's not easy, it sucks-----but you will get your life back. I hope this helps you in your time of need..........you will kick the bugs *$%!!!!
I was diagnosed with lyme on Jan'08 after having it for at least since Oct '07. I was given doxi for 2 months by my pcp with minimal to no improvement and then nothing for 4 months.
I then found a new doctor who I thought would really help. I was wrong. She helped a little at first and then put me on doxi for months & I steady got much worse. The whole time she was telling me it was a herx. I then found my current lyme doctor.
He first put on on 3x the standard amount of doxy & did a peak/ trough blood test........he found my body absorbs a small trace amount of doxy- so for all this time the antibx were doing nothing. With this new doctor I ran the gambit of antibx, except for the PICC line.
I have a 2 year old & refused the PICC- I did not want her pulling it & was afraid of infection. Instead I did many many many months of bicilin shots 3x per week.
My only positives for blood test are lyme & mycoplasma. My MD is not concerned about the mycoplasma since I don't have any major symptonms for it & the antibx I took for lyme would treat myco too.
My 2 naturopaths both have read lyme, babesia, bartonella & erlichea on there f-scans & vega machines. Before all of this I thought NDs were snake oil salesmen. I was wrong- they were just as, if not more important than my MD- depending on where in hell I was.
I have used rife machines, herbals & finally the HPMP along with the antibx, and now only the HPMP. I found the HPMP to be my main weapon against these nasty bugs (I'll get into this more later).
Before I got lyme I went to the gym 5 days a week, weighed #215 @ 6 feet tall (not to toot my own horn but I was ripped & in great health). I am an architect who has won design competitions and again not to toot, but smart.
When this all hit here are my symptoms: first I thought I pulled a muscle in my back, then sharp shooting pains up my neck and down my arm.
Then I really entered hell.......massive brain fog, felt I was not in reality, lost emotions/ feelings, horrible rage (I ripped 2 metal chairs apart with bare hands & told my own mother she would leave my house in a body bag), severe depression (suicidal--get this out of your head!!),
visual distortion, light sensitivity, ears ringing, hearing sensitivity, horrible body aches- muscle, bone, joints, bottom of feet, always cold- my body temp dropped to 96F all the time, no sexual desire, horrible malaise, insomnia
(I needed an rx to sleep all night), lack of energy, full body numbness, air starvation, horrible headaches, loss of taste, loss of all will & desire, really messed up & graphic dreams, spasms, problems with motor skills, severe cognitive issues, severe memory loss, general anxiety, and I could not go to stores/ public gatherings because I would get panic attacks..............Hell!!............
.but again I'm 90% back 90% of the time!!
I recommend the following: find a good llmd for antibx, if possible find a naturopath- hopefully one who has rife and/ or vega.
One of my NDs helped me tremendously with detox & detox is key when in herx mode. If you cannot find a doctor who uses rife- or even if you can I highly recommend reading the Rosner book.
From there I learned about the HPMP. I got one & have been using it since July'10 & this has been the key to me getting over a huge lyme hump. I use the hpmp 5 days per week for +/- 1-1.5 hours a day. I have now been off antibx since 9/11/10.
My llmd is ilads so he wants me to go on for the small & few lingering symptoms, but after reading the Rosner book I do not want to. I will kill the rest off with Rife & HPMP.
Also- find a reason to beat this down & live. I my darkest times I thought about my new born daughter, my wife....they are more important to me than myself. I was not going to loose, simply to be here for them.
You need to find something in your life to need to beat lyme for....even if it's not simply to be consumed by these awful bugs. You're worth fighting for.
When I was really bad I had a famous pediatric llmd tell me I was ``fixable''. I kept this with me in my worse pain, worse brain issues & this pulled me through.
I'm here as proof we are fixable. If I help one person pull through this by reading this all my suffering was not for nothing.
Go kill some bugs & get your life back. If I did it so can you!!!!!
(Guilford CT-lymer) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's so good to hear that you are doing so well. I'll have to go back over that more later but one term confuses me so I'll go ahead and ask about that.
I checked google but did not find what you must mean for HPMP.
You may have written it but I can't see it, other than it must be some kind of machine the way you describing using it. What is HPMP? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Okay, rather than just a search for HPMP, a CROSS search (HPMP, lyme) may have answered that:
High Power Magnetic Pulser (HPMP) ? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Congratulations on regaining your health and thank you for the helpful hints. I am glad you are doing well.
Posts: 747 | From Utah | Registered: Apr 2010
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posted
That's awesome. So glad you are doing well. We all need to hear success stories.
Can I ask what machine you're using? I have a DC-PEMF machine which I've been using for a few months. I feel better when I use it but have yet to see any dramatic results like you have.
Posts: 707 | From Colorado | Registered: Jul 2010
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posted
That's so good to hear CT Guilford-Lymer! I wish I could read more stories like this. Thanks for this post, it does offer a little reassurance, at least for me! Hope you continue to feel better!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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posted
I read the Rosner book and tracked down the creator of the HPMP who is mentioned in the section about High Powered Magnetic Pulsers, so I do not know an exact model type/ number.
Posts: 11 | From Guilford, CT | Registered: Aug 2010
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posted
I'm so glad to hear that you are doing better! This is wonderful news for us to hear, and I'm sure no one is happier to hear it than you.
I am very interested in your experience with using antibiotics alongside rife.
For 5 1/2 months now I've been using just rife, and I've begun to vaguely consider adding antibiotics, or herbal antibiotics. However, Rosner makes it sound as though rife will cease to have its intended effect when used with antibiotics (due to the spirochetes being unavailable to be zapped).
Did you find that rife definitely had an effect when you were on the antibiotics? Do you notice a difference in rife's effect now that you aren't on antibiotics anymore?
Also, were you able to differentiate the effect the rife was having versus the antibiotics?
Thanks! I'm really very interested to hear your experience, if you have energy to share. Best to you, and congrats again.
Posts: 232 | From Oregon | Registered: May 2010
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posted
I think that is the reason to use the HPMP along with rife. If I remember correctly from the book, the HPMP gets at the cysts and the rife gets at the spirochetes. Someone correct me if I'm wrong.
Posts: 707 | From Colorado | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Uh, although the author of the Lyme and Rife book says that about the HPMP getting the cysts, that's just some idea he came up with with nothing to back it up! (This from the horses mouth of the inventor of the HPMP).
However, the HPMP is awesome and very unique. And strictly speaking the HPMP isn't a rife machine, unless you have a model that gives frequencies that you can dial in.
Of course you can use abx and rife together. It's hooey that you can't.
HOWEVER, I don't recommend it for most people, because you can end up in the ER or worse from the combined herx!! It happened to me. I almost didn't make it, as the neurological herx was so severe and long-lasting!! So watch out!
Posts: 3792 | From around | Registered: Mar 2008
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posted
Rumigirl: I would be interested to hear more about your experience using rife and antibiotics together.
Did you find a lessening in the effectiveness of either one, when done together?
What treatment did you end up choosing, when you found the combination was too much?
I realize that the herx would need to be HUGELY monitored, since you'd be treating from two angles. Good reminder though.
Posts: 232 | From Oregon | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thank you for sharing your success story. We need to know there is a light at the end of the tunnel. I haven't tried any machines yet.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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It still doesn't make sense to me that a magnetic machine would kill spirochetes and co-infections.
I would try it though, if it were free, but I would never go off of any of my meds.
I went off my meds once, and in 2 weeks I was suffering and in horrific pain.
I have had Lyme almost 30 years, and I didn't even know it until I got re-infected 3 years ago.
I only started treatment last year.
There is a lot of healing that needs to be done in my body.
The doctors knew I was sick 30 years ago, and didn't help me.
They saw that I got even more "sicker" 3 years ago, and still didn't help me.
I was so sick, that I was at a point that I was making funeral plans. I had so many symptoms and I was in pain that was torture.
but then I found a LLMD
My LLMD is my hero. my LMD saved my life.
I can tell I am getting better. So many symptoms are gone. Some symptoms resolved withing 2 days!
If a machine can help someone who has had Lyme and co-infections for 30 years then I will try it. But I need proof first.
I would love to hear about someone who had Lyme for 30 years and got better from machines.
I am not trying to be rude, but I know some Lyme people may not be able to make wise decisions right now. I want them to have as much info. as possible.
Please also be careful with ND's.
The only people I truly trust are the ILAD trained MD's who have experience or are willing to learn from MD's that have helped make people well.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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missing-- my licensed ND is ILADS member and can Rx antibiotics.
In fact, her scope of practice license prevents the risk of losing license that an llmd has when they do some of the lyme treatment.
My sister's ND found her lyme and saved her life.
nd's in all states are not licensed or licensed the same.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Thanks for the great story.
I was diagnosed in July of '07. Still in treatment and still sick as heck. I have tried and still try Rife, herbs, good diet, abx, LLMDs, and still no luck.
I want to walk in front of a bus some days.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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posted
Yes, my ND too was the one that figure out I had Lyme, but then turned his back on me.
My ND was not liscenced to prescribe abx.
I just worry that some people might put all their faith in a ND who decides to change his mind half-way through the game. My ND was very familiar with ILADS protocol and also may have been trained by ILADS.
I have a great LLMD.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
After having chronic lyme since 2004 and possibly for 30+years I saw a fanatistic LLMD since 2004 for 4- 1/2 years who prevented me from dying and I then saw both the LLMD and a naturpath.
I used perscription antibiotics along with natural antibiotics and rife.
As I got somewhat better I began only seeing the naturpath.
I then stopped all perscription antibiotics and remained on the rife and natural antibiotics for over a year now.
I am so much better that most days I don't even think about Lyme disease.
I had all the same symptoms as Guilford CT - lymer wrote in his post and then some.
I was out of work, in a wheelchair and bedbound for 17 months and was finally able to return to work last Feb.
Prior to returning to work, I was treated for traumatic brain injury for a year due to the damage lyme had caused.
The only symptoms I have once in a while now is knee pain and foot pain which is the first symptoms I had when the lyme problems began.
We are still finding lyme with the F-scan and vega and treat that with rife and natural antibiotics.
In the past 5 months,I have forgotten that I even have lyme. We still treat anyway since it shows up on the vega machine and the F-scan.
Once we don't detect anything on the F-scan and vega I will still see the naturpath every 6 months in order to check if anything is active again before I even start feeling it.
If anything shows up, we will start treatment right then before it takes over my body as it did in 2004.
With the right doctors and much patience and compliance you can get better, I am living proof of it. I am not free of the bacteria but I have finally conquered it!
I have never tested (with mainstream testing)positive for lyme disease or any co-infections. The vega machine detected babs, borrellia, bart, ehrlichia & mycoplasm and that is what I was treated for.
I wish all of you could conquer this bacteria as I have been able to do. I live in CT and have a few doctors who know the disease thoroughly and can treat it.
The greatest thing with these doctors is the acknowledgment I get from them as to what I am going through.
My hope is that every state gets to that point so everyone can be helped.
Take care, Margaret
-------------------- Margaret Posts: 103 | From CT | Registered: Feb 2007
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posted
I have had good results with rife and I considered the device the poster talks about. i believe
I read that there are some people who feel that this type of electro med magnifies the powerfulness of prescription meds and can't be used when on prescriptions.
I am so glad the poster feels better and I want this to be the answer for him and for some of the rest of us.
But... I notice the time of your infection and that it was very close to the time of year you were diagnosed.
It made me wonder about Lyme cycles and that You have a good year and then a bad year.
I remember I had a really good year with alot of symptoms stopping around the same time after my diagnosis. I could eat anything and I had more energy, less dizziness etc.
I would just say keep treating and take good care of yourself. Do not back off, do not take risks.
I enjoyed that year and not having to pay so much in medical costs and take so much supplements. I wish I had kept up the treatment.
The year after my good year I had twice the symptoms I had two years earlier and I soon lost my job and was diagnosed with Lyme related encephalitis.
The cycle of Lyme Does anyone else have experience with the lyme cycle/good year followed by worsening.
-------------------- All things are possible through Christ.... Posts: 8 | From Lancaster, PA | Registered: Dec 2010
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posted
Marta, The naturapath that I see has a high tech electronic EMEM and I have a "dial" type EMEM from Rifelabs that I use at home. About a week after each rife session at the naturpath I run the same frequencies again at home. Since the frequencies change I get them from the doctor at each visit from what they find on the F-scan. Soem day I hope to get an F-scan of my own. Hope this helps! Margaret
-------------------- Margaret Posts: 103 | From CT | Registered: Feb 2007
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posted
Sorry to all. I have not been on lymenet for a while. I will try to answer all questions........here we go:
(I recommend reading the Rosner book Lyme Disease & Rife machines........in my opinion the best lyme book out there).
Did you find that rife definitely had an effect when you were on the antibiotics? I threw the kitchen sink at this. I did antibx, herbals & rife. I would Herx really bad all the time in the beginning. My naturopath says she has frequencies for the lyme cyst. So I think rife & antibx are ok, but I think rife is the key to a win.
Do you notice a difference in rife's effect now that you aren't on antibiotics anymore? I'm not sure. I think my germ load is low enough now that I don't herx too badly. However I just got over a flu where by temp went up to 103.5 & I think I was herxing like crazy....massive body aches, but that could have been from the fever. (I have always run really high fevers)
Also, were you able to differentiate the effect the rife was having versus the antibiotics? The whole time I was on antibx I would herx. I would notice an increased, sometimes severe herx from rife while on antibx.
I think that is the reason to use the HPMP along with rife. If I remember correctly from the book, the HPMP gets at the cysts and the rife gets at the spirochetes. Someone correct me if I'm wrong. I think the hpmp gets them all.
Did you find a lessening in the effectiveness of either one, when done together? No. actually more intense. I was knocked on my @$$ for 3 weeks once from a super herx. It was my daughter's first Christmas. We have pictures of me on the floor while she is opening presents.
What treatment did you end up choosing, when you found the combination was too much? I plowed through it and did antibx, herbals & rife all at the same time. It was hell. My herbal naturopath helped immensely with detox.
The cycle of Lyme Does anyone else have experience with the lyme cycle/good year followed by worsening. No I have only gotten better over time- with the dips of the cycles.
Hope this all helps!!!
Posts: 11 | From Guilford, CT | Registered: Aug 2010
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posted
It does help! Thanks for sharing.
Posts: 707 | From Colorado | Registered: Jul 2010
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Rock on!
I'm very interested to hear about your experiences with the machines. I've not been able to afford either, but it is interesting to hear about a significant number of folks who've been helped. Time to start a piggy bank perhaps.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
Hello Guilford CT-lymer, I read your post.could you please tell me do you think the 3x wk of the bicillin IM's helped you also? Was it Bicillin CR or LA--I know the lyme literates are saying the IM's should be at least 3xwk. I have been off and on getting the bicillin approx 1x wk. Usually the 2nd day or next day after I feel much malaise & a lot of times soreness at injection site.
Did you get the soreness etc. esp at 3 x wk. It also depends on the nurse who injects it..Has to be put in slowly. Could you tell me approx how long you got the bicillin IM's for at 3 x wk.& do you think that helped you or do you think the whole combo of what you did.Glad you are better & thank you.
PS. A lot of my symptoms are vascular and a lot of skin items at present. european like the acrodermatitis chronica atrophicans- I have had hyperbaric several times.It really helped a lot-maily the lower leg horrible skin condition. A lot of my re occurring rashes last several yrs. are exactly like on Eucalb-the European web site. I am an Amer. born citizen. All 4 grandparents from Croatia which is loaded with borrelia skin manestifications. Perhaps it is in my genes and that would then hit my weak points more.
Altho the skin condition has occurred in Amer. born citizens and also is from B. Burgdorferi it is rare in US. In the past I have had various eye symptoms and all at one time left eye - a bunch of eye symptoms & several the rare ones.
Posts: 35 | From PA | Registered: Nov 2007
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1. i think the bicilin helped very much. i herxed like crazy from this stuff- i was ready to call it quits. 2. i think it was the LA 3. i was really sore from the shots. swelling, bruises, etc....it really sucked. i was also on other antibx at the time. i cannot recall which ones- i ran the gambit. i threw everything at it i could & i think it all helped. 4. i cannot remember how long i did the shots 3x per week...it was months, but i did build up tp 3x & then tampered back down to none.
i truly believe in the theories in the Rosner book & think i've lived them...
keep on beating the damn worms down---you can win!!!
Posts: 11 | From Guilford, CT | Registered: Aug 2010
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posted
Reply for Guilford: Thank you for your reply. Yes when I get the bicillin esp when more often altho basically mine are once a wk. If continuous,(1x wk.for a while) the next day or so fagged out and sometimes at injection site sore.
But I do think they help. That was a good letter you wrote originally. Just noticed bruises etc. you got- yes purple ones sort of vascular. Your ltr. above was very encouraging.
Posts: 35 | From PA | Registered: Nov 2007
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