posted
One person says this, one person says that. A doctor says they're wrong, and another doctor thinks this doctor is a quack. All the while my head is swirling around as I sit parked at a 10-way stop sign.
This is what taking on a lonely disease will do to a person. Add in the fact that I'm having reactions that aren't typical of this already untypical disease, and I become a bottle in an ocean of confusion floating aimlessly by itself.
Dramatic enough? What am I to do when medication that is at least partially beneficial to the majority of people on here is actually dangerous for me? I would be much more pleased to have no reaction than to find out that the medications that are needed to treat these infections are actually rejected by my own body.
Another superior defense mechanism of this disease or am I dealing with a malfunctioning system that cannot support my attempts to clear the infections? A question of essential importance I ponder daily as I find it nearly impossible for a doctor to ponder it with.
I have an office with an LLMD who's willing to treat the disease. The problem for me evolves from adverse reactions to the medications and supplements used to treat it. They're not common of Lyme disease, and then I'm told they're not sure what to do next. They can offer a different medication, but it doesn't seem to be going after the target area.
Being specific I'm talking the skin sensitive and neuropathy that appears when trying Mepron and Plaquenil. It's really scary watching my skin lose it's elasticity, become transparent, easily susceptible to breaking open and bleeding. But, it's only when I try these medications does this become a problem. Therefore, no doctor wants to investigate further even though I feel like it's a crucial part of the puzzle.
What other medications are well-known Lyme drugs that can penetrate intracellular infections. None that I can think of, and I'm left wondering how do I fix my system so that this reaction doesn't happen to the medications.
I don't know how else to approach it. I don't think it's a Herx reaction anymore. With all my experience, it seems more plausible to being a malfunction of the system and my ability to tolerate it. With no doctor willing to investigate further, I aimlessly try to solve this big problem on my own.
I guess I'm partially venting, hoping someone comes along and says I know how to help. I'm looking for an unconventional solution to my already unconventional problem.
If you'd like more detail and have advice, I'm all ears.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Hello Wolf, there have/are people that do the rife machine.
That therapy has not been utilized by my daughter, but I have read a lot about it and it might be a help for you.
Do you know for sure that you are having reactions to the supplements? How do you know that...like do you introduce one thing at a time? Just wondering.
So sorry.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
Are mepron and plaq the main problems here.. or lots of reactions to lots of meds??
For babesia you could try zith and artemisinin.
It's a frustrating illness, that is for sure! I bought a rife machine AFTER I got well. I think it sure has helped me stay well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Yes, that's an idea, Tutu. And TF treated Babesia with Bactrim and Artemisinin.
Maybe you should consider Dr. K. He sounds like the closest thing to what you need, a doctor who can figure out what is going on with your body and has an idea how to fix it.
Sorry you're struggling like this, Wolfed. Wish I could be of more help.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
You have read the posts on methylation problems? Might be worth looking at.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
wolf, I wish I had the answer for you because the I would have the answer for myself. I have been unable to tolerate all treatments I've tried(abx, herbals, rife, methylation protocol, many supplements, NAET, laser detox,etc).
I wouldn't rule out the rife though. I read up on it and some have good results. I tried the computer-based at my llmd office but got another layer of tinnitus electric sound that never went away. I don't think that's common though.
My llmd, who has seen hundreds of patients, thought my chemical sensitivities were so bad that I must have gotten carbon monoxide poisoning. But i'm not sure that was the case and couldn't tolerate even the smallest amount of supplemental oxygen that he prescribed.
I know I have impaired detox pathways/methylation problems and adrenal fatigue, and probably heavy metal issues(have you looked into these issues?) in addition to the lyme, babesia and who knows what else.
I don't imagine either of us will be able to tolerate any strong treatments until our bodies can detox properly, how to get there I'm not sure. My llmd is throwing darts at this point.
I've considered Dr. K or Hansa, but both would be costly, or looking into the KPU possibility.
I hope you find some answers and if you do post them here please!
take care
Posts: 857 | From northern california | Registered: Dec 2009
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I may eventually have to look into rife therapy, cause I can't stay on Bactrim forever.
The methylation discussion is real interesting to me, I'm hoping to understand more soon.
And, geez dogmom... I've explored a lot of options, many more terrains to be surfed to, but you sure can relate to what I'm saying. I also hope you find some answers to.
When I figure things out, I'll be sure to post about them.
Posts: 829 | From MD | Registered: Dec 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
Take a few deep breaths. This does not mean the end of treatment. Roadblocks are common. They are not insurmountable.
Your skin reaction is so typical of scleroderma or acrodermatitis chronica atrophicans, that I really don't think this is your body "not handling the meds." I do think this is a reaction to the meds. But I think it's your pathogens or your DNA responding.
I saw you posted about scleroderma on Roadback, and didn't get much help other than "take minocycline." If your response is scleroderma, that's a DNA response to inflammation. But since you report more neuropathy and thinning than Reynaud's and thickening, I think you sound more like ACA.
I posted two links above. One has pictures of ACA. The other has extensive description. I hope they help. Maybe you could find more info on Lymenet Europe.
You could be responding this way to Plaq and Mepron for a few reasons. One would be that when your Babs load comes down, your Borrelia symptoms come forward. This is a common response to meds.
It could be a Borrelia herx, with resultant increase in symptoms.
It could be increased inflammation from general die-off, with ACA being your body's response to your Borrelia strain.
It could be Borrelia activity due to decreased immunity, from meds or herxing.
Regardless of reason, I would not take meds that induce these symptoms. Scleroderma symptoms are known to reverse with treatment. I have no idea about ACA. It may not be considered reversible when it is late stage.
Research the European Lyme strain and make sure you are on the best possible med combo for it.
Can you test for your strain? The European strain is here. You need not have travelled. I don't know what labs offer this service.
For Babs, go with alternative meds for now. You may be able to go back to the Plaq and Mepron later.
Can you get an infrared sauna? I would not hesitate to do this if I had major skin symptoms. IR saunas heat and penetrate. They are very good at killing Bb in the skin.
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Wolfed, same problems I am at a loss as what to do or not do. I am waiting on a phone call from my lyme doc. Then will take it from there. As bad as I feel most of the time I do feel better without meds of any kind. When I start the meds the reactions are much worse than the horrible symptoms I suffer.
No, its not herx its the fact my body doesn't tolerated meds.
If you find an answere let me know and I will do the same. Hoping my doctor will have a suggestion or something else for me to try.
Good luck,
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Pinned to the walls is not my expression for what has happened to me. I think of it more as being in a room in which the walls keep moving in, making a smaller and smaller place to stand, until I am flattened into a pancake and the game is over.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks BM, as always.. I'll look more into this when I have the energy. For once I want to press a square against the shape wall, and have it push through.
And... crap phyl and lou. I really hope ya'll find some more positive energy soon. I guess that's why we're here. To bring each other up when we're down and help each other to the finish line.
Posts: 829 | From MD | Registered: Dec 2009
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I was becoming SO sick from my 'treatments' (I posted a detoxing from detoxing thread here) I didn't know up from down. I couldn't tell if I was herxing, having a drug/herb reaction, sick from something else...I started to doubt the Lyme, myself and honestly just wanted this to be over...permanently.
I went off everything. EVERYTHING. I had to.
Had my liver and kidney functions checked and they were perfect. Go figure. I had my doc run a bunch of other labs but he was so concerned with how bad I had gotten he put me back on abx.
Amox, 1g BID. Not *the* treatment of choice, but I can't handle doxy anymore and clearly multiple things piled on each other didn't work.
I am starting to believe that some of us simply cannot handle taking eeventy-billion pills every day. I can't go balls-to-the-wall with all sorts of herbs/drugs and though my body *seems* to be handling it...it isn't.
I am doing one at a time now. It may take onger but I just can't take the herxing, etc anymore. After all these years I just don't have the gumption to do it anymore.
I know people take breaks sometimes, and I have. It seems that if I stop everything for a week/month and start over, I am better able to 'deal'.
I am trying to heal my immune system too, as I believe that part of my issue is that my immune system hates me Perhaps once I address some of thise issues, I can come back and be more aggresive with the Lyme...who knows.
Bottom line? I do hear you, and feel what you are going through.
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
I'm trying to make a decision about which rife machine to buy. I have an EMEM3, which has an analog frequency generator. The newer models have a digital generator. The BX(?) 4000 is a contact machine with a digital generator that can run many frequencies at the same time, but costs about $2500. The unit I have has definitely helped. I personally believe it may be what we've been looking for (rife, that is), but it only works without abx. I wonder if anyone has experience and suggestions. Thanks. Bob
Posts: 17 | From Brooklyn | Registered: Jul 2001
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
After 4 yrs of abx incl 6 mos of IV and still sick, I was developing lesions because the disease was disseminating so fast.
I switched to salt/c and antiparasitic herbs which saved my life. Not saying it wasn;t rough, but I am close to remission. Check out lymestratgies also, for more alternative ideas.
Good Luck,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Mepron and plaquenil work as antiparasitic.
Gael I have the lesions and my skin was coming off when on LDN. Now all new skin.
Wolfed Out, you could do another round of parasite treatment, but not so aggressive as your last one. Is your skin now healed? I rife and was told if you have heart problems you cannot use a machine with handhelds - do you have heart issues?
Posts: 1834 | From US | Registered: Oct 2008
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Perhaps once I address some of thise issues, I can come back and be more aggresive with the Lyme...who knows.
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