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Please help me pick a treatment

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Lyme Disease
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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/22/2018 11:43 AM (GMT -7)
Hello I am currently working with my primary doctor as well as trying to treat this on my own. I am not testing positive for Lyme but do have many symptoms including expanding rash, sudden high blood pressure, terrible neuralgia in my right arm, shoulder and feet, sleeping problems and dizziness. It’s been about two months since the rash appeared. My symptoms tell me I might be in stage 2. My doctor is willing to give me 10 days of doxy. I have ordered the modified Cowden protical as well. I have appointment with a LLMD on Oct 2nd. Is there anything else I can do at the moment to help? Please help with advice I’m feeling hopeless.
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oregonhay
Regular Member
Joined : Jul 2017
Posts : 413
Posted 9/22/2018 12:03 PM (GMT -7)
Don't listen to any primary doctors advice regarding Lyme, everything else is OK. The medical field is compromised. Listen to your LLMD. Getting Doxy for 10 days is a start, but totally laughable. Yes you might have caught it soon enough to be treated successfully, ask your LLMD -- although this is tricky.

I went through PhaseI and Phase II, and then Phase III listening to a Primary Doctor, he basically walked me through to my deathbed. I call him Dr. Lucifer now. It wasn't until I found a LLND that I got better.
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HeartsinPain
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Joined : Sep 2018
Posts : 580
Posted 9/22/2018 12:10 PM (GMT -7)
So sorry you went through that. Thank you for your help. Should I take the Doxy? Would it kill off some bacteria? I’m so scared, do things get better? Ty again.
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sebreg
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Joined : Jun 2015
Posts : 1925
Posted 9/22/2018 12:16 PM (GMT -7)
Glad to hear you will be seeing an llmd. In the meanwhile I think slowly starting an herbal protocol (like Cowden) is not a bad idea. I'd start slow though just in case you have herx responses. I also would try integrating various detox methods and seeing what helps, this can take some trial and error. Things like alka seltzer gold plus lemon water, burbur, pinella, activated charcoal, bentonite clay, epsom salt baths, infrared sauna, chlorella, milk thistle, NAC, glutathione, alpha lipoic acid, etc... you don't have to do all of those, those are just ideas. More ideas here: /www.tiredoflyme.com/detox-methods.html

10 days of doxy is not really going to do much for an established infection, imo. I think it is better to start the herbal protocol, then see what the llmd recommends in terms of treatment options and seeing what you think makes the most sense (I think it's important to research treatment options that doctors recommend beforehand just to be safe).

When you see the llmd try and see if they have ideas for things that could help your sleep. A critical aspect of recovery is trying to find ways you can get some decent sleep.

Btw, things do get better. It can take some trial and error to find the right path to recovering health, but it is absolutely possible.

Some good resources in terms of learning more about your options and these infections: Dr Horowitz's books and also Stephen Buhner's books (his website is also a good resource).

Post Edited (sebreg) : 9/22/2018 1:19:31 PM (GMT-6)

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HeartsinPain
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Posts : 580
Posted 9/22/2018 12:19 PM (GMT -7)
Thank you so much I really appreciate the help.
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oregonhay
Regular Member
Joined : Jul 2017
Posts : 413
Posted 9/22/2018 12:22 PM (GMT -7)
Yes the Doxy is good for you. Make sure you pay attention to what happens to your body and symptoms, and what happens if you run out (unless your LLMD appointment you can get more). Your doctor probably didn't give you enough to cross your bloodbrain barrier. Again, your LLMD will know within 5 minutes what is going on. Don't read things on the internet and decide not to take medicine, you're going to have to be extremely vigilent and find a LLMD you can trust. Do NOT trust a primary medical doctor -- after 3 years, my medical doctor FINALLY gave me Doxycycline and YES it did 100% make my symptoms go away. But after 10 days after I ran out, it came roaring back. Like worse than before. Then my doctor refused to give me more. He said it was in my head. When I asked why my skin rash went away when I was on the doxy, and then it came back when I ran out, and I asked him for the specific medical science behind that, he had no explaination because I exposed him as a liar trying to et me on SSRI. At that point I declared him incompetent, got antibiotics myself, and found a LLND 350 miles away. But it was only after the doxy and him refusing to help me and back up his reasoning did I realize I was being lied to for so many years. Now I wouldn't trust any doctor around children. They are pure evil. They are literally possessed. However if you got Doxy so soon from yours, maybe yours is not as bad. I am projecting my bad experience and showing a bias. Primary Doctors just can't talk about Lyme or they lose their license so they do EVERYTHING they can to not treat it or acknowledge it.
In my state, Oregon, Lyme Doctors are banned. You must go to a LLND instead of LLMD in my state. You have access to a LLMD that is wonderful, do that.
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HeartsinPain
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Joined : Sep 2018
Posts : 580
Posted 9/22/2018 12:51 PM (GMT -7)
Thanks so much for your help. So sorry you had to deal with that mess. Do you take Doxy daily? How long did you go undiagnosed? Did you ever test positive for Lyme eventually?
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oregonhay
Regular Member
Joined : Jul 2017
Posts : 413
Posted 9/22/2018 12:55 PM (GMT -7)
Right now I take amoxicillin and penicillin. Where I am at, it is very sunny and Doxy can cause your skin to burn a little bit. If you are outside all day, you will be slightly annoyed after taking doxy. I do have a prescription for doxy but I am going to wait until the Winter because the penicillin is working fine for now.
You want to pay attention to what happens when you take it, how many days until you noticed it, what happens when you stopped, what symptons went away, did you get any other symptons, each aspect of sympton skin,hair,joints,backpain,fatigue,brainfog. this information is key to your LLMD. start a journal if you want to
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HeartsinPain
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Joined : Sep 2018
Posts : 580
Posted 9/22/2018 3:10 PM (GMT -7)
Thanks so much for those tips. They originally thought I had a UTI and gave me Bactrim. I had a really bad Herx that week. Do you think I’ll Herx on the Doxy too?
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oregonhay
Regular Member
Joined : Jul 2017
Posts : 413
Posted 9/22/2018 3:48 PM (GMT -7)
I think Bactrim is Penicillin G, but $2500 instead of $8.
I don't know about your herx.
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G-Ju
Regular Member
Joined : Apr 2018
Posts : 148
Posted 9/22/2018 3:53 PM (GMT -7)
I had a similar thing happen to me. Negative tests from the hospital and my PCP, but I was 100% sure I had Lyme because there was nothing else wrong with me.

Before I was able to see a LLMD, I BEGGED my Primary Care to humor me and start me on something. She reluctantly agreed and started me on Doxy. Within days, I was feeling some relief. No huge changes, but it was enough to know that it was helping. I was on 100mg twice a day for two weeks until I saw the LLMD, and my NPLLMD increased my dose to 300mg twice a day. And, my Lyme tests came back positive for Borrelia and Bartonella with the NPLLMD.

Even though your doctor probably won't treat you for any length of time, take the 10 days of Doxy and see if you experience any relief. Taking the doxy shouldn't interfere with your next round of Lyme tests with a LL doc. If you experience some relief, but you run out before your LL appt, call and tell your doc what's going on and maybe they'll extend your treatment a little.

Good Luck!
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HeartsinPain
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Joined : Sep 2018
Posts : 580
Posted 9/22/2018 4:26 PM (GMT -7)
Thank you so much G-Ju! I have been suicidal but you guys are all giving me hope!
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Donjr
Regular Member
Joined : Apr 2018
Posts : 434
Posted 9/22/2018 6:41 PM (GMT -7)
Lauricidin, allimax.com allicin. And get to llmd asap
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44350
Posted 9/23/2018 1:20 AM (GMT -7)

oregonhay said...
I think Bactrim is Penicillin G, but $2500 instead of $8.
I don't know about your herx.

Bactrim isn’t penicillin??
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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/23/2018 7:48 AM (GMT -7)
So are LLMD able to do IV antibiotics? I feel like with how bad my symptoms are this might be the way to go.
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sebreg
Forum Moderator
Joined : Jun 2015
Posts : 1925
Posted 9/23/2018 8:01 AM (GMT -7)
In most cases IV abx aren't necessary. Imo if one is going antibiotics route, better to try oral antibiotics first. They can cross blood brain barrier. If one runs into gut issues from the oral antibiotics, then I think iv antibiotics can be worth looking into as a second option. But there are certain things one can do to help hedge against gut issues from oral antibiotics (probiotics, diet, nystatin, etc). Every medicine has potential side effects, but IV antibiotics, far as I can tell, generally carry a bit more risk, ie blood clots, serious infection...
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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/23/2018 8:08 AM (GMT -7)
ok thank you so much for that advice. You guys are all so helpful and we’ll informed. I really appreciate the help.
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bluelyme
Veteran Member
Joined : Nov 2015
Posts : 5876
Posted 9/23/2018 6:29 PM (GMT -7)

Girlie said...

oregonhay said...
I think Bactrim is Penicillin G, but $2500 instead of $8.
I don't know about your herx.

Bactrim isn’t penicillin??

Sulfa class is not penicillin class very different mechanisms of action..

Cowden did not do much for me where byron white was nice and potent.
Look into andrographis ,zhang protocol, rife and other modalites, abx arent the only way
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oregonhay
Regular Member
Joined : Jul 2017
Posts : 413
Posted 9/23/2018 9:25 PM (GMT -7)
Yes I am wrong about Bactrim. Thanks for catching that. lymebrain

I was thinking Bactracillin somereason I got them mixed up. You learn something new everyday!
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k07
Veteran Member
Joined : Sep 2015
Posts : 3442
Posted 9/24/2018 7:41 AM (GMT -7)
Do you think you were just bit by a tick? I'm not sure if the expanding rash is a bulls eye or another rash. If this is an acute infection you should be on doxy right away. The 10 days of doxy will at least get you through to the doc appt.

If this wasn't a new bite, has there been anything new to trigger all this?

I think epsom salt baths are a great way to detox and get some magnesium (which can help you sleep). Super easy and good for everyone. Also, eating a clean diet can only help. Filtered water with a squeeze of lemon is great too.

Post Edited (k07) : 9/24/2018 8:49:04 AM (GMT-6)

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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/24/2018 8:00 AM (GMT -7)
Thanks for the advice I appreciate it. I think if it were just a tick bite I wouldn’t be so sick now. I have terrible nerve pain, sudden high blood pressure, sleep problems and so on. I’m glad the Doxy will help me. Do you Herx a lot while taking it?
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k07
Veteran Member
Joined : Sep 2015
Posts : 3442
Posted 9/24/2018 10:42 AM (GMT -7)

HeartsinPain said...
Thanks for the advice I appreciate it. I think if it were just a tick bite I wouldn’t be so sick now. I have terrible nerve pain, sudden high blood pressure, sleep problems and so on. I’m glad the Doxy will help me. Do you Herx a lot while taking it?

I get the same reaction with all antibiotics - insomnia and frequent urination. I'm really not sure if it is a herx reaction or a sensitivity to the antibiotics. I lean towards sensitivity because all it takes is one pill for this reaction. I do test positive for lyme and bartonella.

I hope you get some good answers from your LLMD on Oct. 2. This is a good resource and questionnaire:

www.lymeactionnetwork.org/wp-content/uploads/2015/06/MSIDS.pdf

Usually we all have to address many other things than just Lyme. It's a process for sure. Just keep checking in here and updating. You will find comfort in knowing that others are experiencing the same things.
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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/25/2018 6:37 AM (GMT -7)
Hi guys. I just started the Doxy., The modified Cowden protical also came in the mail. Should I add that in as well or should I wait until I see a LLMD for the first time a week from today?
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Healing98
Veteran Member
Joined : Jul 2013
Posts : 1451
Posted 9/25/2018 7:02 AM (GMT -7)
I suggest that you wait. Doxy takes a few days for you to feel its full effect. You may herx too much and need to know how your body is reacting to it. If you add the Cowden Protocol you won't know if one of the other are causing any undesirable side effects (if any).
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HeartsinPain
Veteran Member
Joined : Sep 2018
Posts : 580
Posted 9/25/2018 7:05 AM (GMT -7)
ok thank you very much. If I start to Herx do I continue taking it? I’m scared.
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