More pain and feeling so achy...treatment question

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yelloworange
Regular Member


Date Joined May 2013
Total Posts : 64
   Posted 7/27/2013 5:22 AM (GMT -7)   
Hello,

I'm wondering if anyone can comment on the progression of my symptoms. I just finished week 7 of treatment (on a pulsing protocol with 2 weeks on, 1 week off, so it is my 5th week of abx overall). I'm on mino, bactrim and omnicef, along with nattokinase and some other supplements (and I use burbur drops sometimes but not on a particular routine). I take my abx with a meal to help prevent nausea.

When I first began the abx, my dizziness worsened, head pressure was really awful, ears were so stuffy and had shooting pains, I had intensified hip pain (a mystery spot of pain for 2 years), shortness of breath, and I felt like I had the flu...fever, chills, stiffness, fatigue, etc...and significant day sweating. Also, my skin gets purply and spotty-looking on my legs especially, and my face gets slightly swollen and discolored (not sure that others notice, but I feel like I look sick), and my lips have hot pin prickling sensations at times, but I don't think I'm having an allergic reaction. My cognitive performance is hit or miss; I'm still functioning at work, but I can't think on my feet to the same degree, and anxiety can be bad at times. I feel like I'm in worry mode a lot.

What I'm finding as the weeks progress is that the stuffiness and pressure in my head is improving, but I'm experiencing new and really uncomfortable pain on top of existing hypersensitivity. It's as if my upper body is improving but my lower body is now dealing with this more, and I'm afraid that it's a sign of nerve or muscle damage. My hips and lower back and legs are so uncomfortable in several ways - really bad achiness, plus what feels like a combo of nerve, muscle, and bone pains, depending on the moment. There are times when I'll feel a shooting pain that is so abrupt that it feels like a leg cramp may be coming on, but then I realize it's "just" a shooting pain. The pain kept me up all night on Monday (the first day of abx after having last week off), it wasn't as bad on Wednesday, but then last night and into today I am just so achy and uncomfortable.

Also, more broadly, it seems like at first abx make folks feel worse, and that during weeks off from them that we feel better. But as treatment progresses, it seems like we'll feel good on abx but bad off of them. Can someone comment on that tipping point?

Sorry for such a long post, but I am just so hypersensitive and uncomfortable right now that I need some input. I'm starting to feel depressed, knowing that this is still the beginning, but already feeling worn out.

ToddPaul
Veteran Member


Date Joined Nov 2012
Total Posts : 884
   Posted 7/27/2013 5:50 AM (GMT -7)   
You have all the classic symptoms of Babesia: flu-like symptoms, air hunger and sweats. Head pressure, the purple dots known as petichiae and dizziness are likely from Babs too. When a person has predominantly Babs symptoms as you do they should be treated for that with either a combo of Mepron/Azith or Malarone. Your combo is a Lyme/ Bart one and does not address your main symptoms. Have you been on any Babs treatment? Sounds like you haven't so I would talk to your doc about that or think about finding a new one. Herbs like artemisinin and cryptolepsis could also be beneficial so you may want to incorporate them into your Babs protocol.

LaurieLye
New Member


Date Joined Jul 2013
Total Posts : 2
   Posted 7/27/2013 6:05 AM (GMT -7)   
Hey there Yellow Orange!

I'm between 8-9 weeks into my treatment. I experienced the same CRAZY hip pain and nagging feeling in my legs for about 4 days a few weeks ago- it went away!- so there's hope, don't worry yourself too much on that one, ok? :) The mental fogginess and emotional variance changes rapidly for me, it's a bear!

I am on a protocol from my ND of Cat's Claw and just added Artemisinin... not going the prescription abx route at this time, but I also trying to figure out if there's any sort of pattern with symptoms and weeks off. (I go three weeks on, 1 off).

My question for you is, what is your diet like? I am a Certified Nutritional Consultant; I have been on a plant-based diet for several years and I actually think it improved my symptoms so much that it took years for me to get to the point of thinking that something was seriously wrong and to get tested for Lyme. I used to suffer from a lot of stuffiness and had several bouts of insane pressure in my head - it would feel like my eyes were about to pop out or my skull would just crack from it- but eliminating Dairy improved those issues almost to the point I never dealt with them at all for three years. Between my first visit to the ND and my follow-up where I learned my test results, I tracked my food intake. I have been gluten free for over a year but I found that eliminating or at least drastically reducing my intake of ANY GRAINS and starchy foods helped a lot with joint pain and stiffness... I still eat my occasional stir fry or brown rice wrap but not near as much as I used to. Keep sugar, and high-glycemic foods at a bare minimum... it might take some time to ween yourself off because sugar is addicting, but it's worth it for sure.

The foods you're eating could very well be playing a role in how you're feeling day-to-day. I also know that the spirochetes feed on manganese (not magnesium), so avoid any supplements you might be taking that have this added.

I hope that helps and gives you a little relief and some insight!

I just started a blog with tips and Lyme friendly recipes you can find it here: lemonsforlyme.wordpress.com

Best of luck fellow Lymie!

Post Edited (LaurieLye) : 7/27/2013 7:09:44 AM (GMT-6)


yelloworange
Regular Member


Date Joined May 2013
Total Posts : 64
   Posted 8/2/2013 10:06 AM (GMT -7)   
ToddPaul and LaurieLye, thanks very much for your replies to my post.

ToddPaul, I'll see my LLMD next Friday, so I will ask which coinfections they are focusing on and why. My protocol will likely change, so this is an opportunity to fine tune things and to make the most of this brutal treatment. What they told me before was that they don't test for specific coinfections but that they assume that all coinfections will need to be treated and then they do a clinical review of symptoms to put together a specific plan.

I contacted the LLMD's triage nurse about the pain, and she was very responsive. We talked through what supplements and other supportive medications (low-dose Lyrica) I'm taking, and she said that I'm not taking enough magnesium, so that may be a big part of this. I upped my Magnesium yesterday and felt a little better, but today is the true test because I'm pulsing Flagyl on top of my normal antibiotics...so far, I'm feeling slight burning pain but it isn't nearly as bad. (Right now, I'm herxing but it's all about the space cadet feeling and the congested head...ugh)

LaurieLye, thanks for asking about my diet. I am in a similar position as you in that my healthy diet appears to have masked the lyme. I was diagnosed with severe gluten intolerance (possible celiac - positive antibodies but negative biopsy) before the lyme. My LLMD thinks that the lyme triggered the celiac, and I was lucky to take gluten out of my diet, but the stark improvement from it made my increasing lyme symptoms easy to ignore until they were obviously a separate issue...so it was a mixed blessing.

I am strictly gluten-free and nearly dairy free as well. I have a small amount of starch when I take my abx, which is unfortunate but is better than the nausea and vomiting I would otherwise experience. I also have brown rice a few times a week, but for the most part, though, I think my diet is in order...mostly whole foods, with the exception of the occasional Smart Balance microwave popcorn (my sodium is low though, so it's healthy, right?)! I'll more closely monitor how I feel after grains, and if this pain persists, you can believe that I will scale back the grains even further.

In the meantime, I'll be sure to check out your blog! It's a great idea!

Thanks again, and best of luck to you as well!

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 8/2/2013 1:43 PM (GMT -7)   
Hi Yelloworange,
 
I was just reading through your thread, and my first reaction was: does he/she (sorry) take enough magnesium? Then I read that the nurse told you the same thing...
 
Are you on B12 (injections)? An important supplement, helps a lot with the prickling nerve sensations.
 
MarieLS
 
 
Lyme & Bartonella. Sick for about 19 years (34 now). Started treatment August 2012 with abx (ILADS protocol, different combinations) + Buhner's Core Protocol. Leaky gut, heavy metals, EBV, XMRV, erythema nodosum, Hodgkin's Lymphoma at 15, Lyme arthritis, many neurological symptoms, food allergies/intolerances, histamine/chemical intolerance and much more.

yelloworange
Regular Member


Date Joined May 2013
Total Posts : 64
   Posted 8/2/2013 2:05 PM (GMT -7)   
Thanks, MarieLS. I guess I scaled back on the magnesium after I had a hard time figuring out the best time to take it (to ensure no conflict with the abx). Plus, I was having a really hard time swallowing pills, and those were the toughest to swallow. Lesson learned...

I have been taking sublingual methyl-B12, 1mg a day. What amount would you recommend?

MarieLS
Forum Moderator


Date Joined Dec 2012
Total Posts : 2690
   Posted 8/2/2013 2:21 PM (GMT -7)   
The problem with sublingual B-12 is that it doesn't get well or not at all absorbed by many people.
 
Injections are the solution to this problem. Sublingual didn't do anything for me. I've been on the injections for a long time.
 
Have a look at this thread, it describes the different kinds of B12:
 
I can't get the Methylcobalamin here in Belgium, they just don't sell it. I've been doing the Hydroxocobalamin, first intramuscular, but for that I needed a nurse to come by 4 times a week, and it hurt a lot. Now I'm doing the subcutaneous injections myself. It works really well!! If someone can assist you just once (a nurse, or a friend with diabetes or so), you'll be able to do it all by yourself.
 
Good luck!

yelloworange
Regular Member


Date Joined May 2013
Total Posts : 64
   Posted 8/2/2013 2:52 PM (GMT -7)   
Thanks so much, MarieLS! I will definitely look into it.
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