I want to hear how you would handle my illness

This week is the last week on abx. Ive been taking Ceftin, Biaxin, and Bactrim DS.
Ive finally file bankruptcy, and am starting the journey to rebuild financially. But I realize, if I dont get my condition stable I can never find stability financially either. And at 46, this isnt where I thought id be, but luckily im very savvy financially. But again, health has to be there for that to happen.

My symptoms have lowered, but some have also escalated. So, to make this simple, ill list the symptoms that are most holding me back.

First, joint pain. As I mentioned in another thread, it seems to be cyclical, meaning once or twice a week it is debilitating.

Second, digestive issues. I feel my digestive motility is slowed. I can sometimes tell what ive eaten 24 hours later. I still get digestive pain. Minor bloating compared to what it was before. Before abx, I would get so bloated I would have a hard time breathing. That will happen occasionally, but I consider it rare now.

These two have the most profound effect on me. I still have many others than rank high, but are tolerable, and though my thyroid is looking great these days, could still be attributed to such.

I need a plan to start around labor day or so. I want to give my body 2-3 weeks to recover from the abx, then go a different direction. The reason is, though I can afford my LLMD, it is very expensive. Though on one hand I do believe I needed more time than 4 months with this LLMD, I also am an impatient sort. And was hoping for more.

For the record, my eating isnt as clean as id like, but it has helped me regain some of the weight loss, and the only time I am unhappy with what I eat is when I physically cannot eat. Part of the digestive issues is pain, and a lack of hunger feeling. I get a nauseous feeling instead. On those days I am lucky to get 600-800 calories. I just cannot eat due to the pain.

So, if you will, please direct me toward a plan of action. My life isnt over unless I give up, and though I have some really bad days, I feel like im coming into my second wind so to speak. I have the determination to get this disease kicked, or at the very least in a remission to where I can make the most of my life. I am sitting at a spot where in one year I can financially have my life back on track and once again following my dreams. But if this disease doesnt turn around, I am of the mindset that ill never recover. Thank you.

I would agree with CD, 4 months of treatment and to be left with those symptoms, you need more treatment.

Unlike CD, psyllium husk didn't work for me, as my digestive issues are pretty severe compared to most. My intestines get pseudo-blockages and I have to keep those from happening, as well as deal with the other digestive issues like you mentioned. If you find that you need more than psyllium husk, I'd be happy to see if I could be of any help.

I would encourage you to be sure you are not dealing with fungal/yeast issues though. The bloating you described and the digestive issues can be caused by yeast/fungal issues, although there is a lot of crossover symptoms between Lyme and Yeast/fungal infections. Probiotics and gut support are essential for us.

I too have lost the ability to feel hungry most of the time. I actually get "hungry" about once or twice a month, on good months. It's now something that I've learned to deal with (eat anyway) and I've been using digestive enzymes, apple cider vinegar (increases stomach acid), and bile salts (my gall bladder was removed). These things help me to get through my meals anyway, but I still have to just realize that my body can't heal or even 'just' go on without the fuel it needs. I learned that one the hard way.

And you're right!! This is NOT over yet!! You can and will make these adjustments (whatever they may be for you) and continue on with your life's dream!!! Just never give in to all of this!!

Thanks all. My digestive issues started way before abx treatment, and for the most part, have gotten better with abx. My doc wanted me to try fiber before. So I bought Metamucil. It actually made things worse, my digestive system really slowed down, to the point he thought I may have a blockage. But I didnt. He then put me on another fiber called Benefiber. I bought the Walmart brand instead. It worked, sometimes too well, so I quit taking it. Maybe I should start again.

Something weird happened the last 2 days. I cant explain it. I had this pain just above my gallbladder. It would come and go. Never lasting more than a second. It really bothered me and I kept rubbing the area. I thoight to myself, this is too far right to be heart related, too high for gallbladder, could be liver or just muscular. Yet everytime I rubbed it, I could not feel any soreness or pain or anything really. It just felt like a nerve spasm with pain. Well, and I know this isnt good to do when youre taking abx, but I had a sugar craving. A BIG one. So I ate 6 Reeses peanut butter cups. Guess what? Pains gone and never returned! Has to be a coincidence right? If it was referred pain from the gallbladder sugar would have made it worse I would think. The liver, im not sure what sugar would do to it. And muscle or nerve, sugar wouldnt effect either I would say. Like I said, cant explain it. Kind of freaks me out.

Oh, sorry....yes im considering herbals quite heavily. I messaged Traveler with someone close by who sells them cheap, but they never got back to me. So, now I guess I have to take time and figure out how much the herbs are going to cost me from more mainstream suppliers. I really gotta watch my money.

Post Edited (trader758) : 8/1/2016 1:18:41 PM (GMT-6)

Well, since I don't use drugs, herbs, and stick with my light treatments I don't know If I should mention what I would do.

First off in Dinshah's book he says don't use light treatments with ANY drugs or herbs. Somewhat like having a glass of wine when your on an MOA inhibitor, or drinking grapefruit juice with some drugs.

But I wold first use the Ultraviolet blood irradiation. Using my home made unit and a 50 or more strand of fiber optic cable would only do 30 seconds.

Then I would go into a dark room and expose myself to a blue light (470nm) or thereabouts.

Dinshah mentioned 215 different illness which according to standard medical treatment each had a different treatment. With all of these he used the blue light. I won't go into the reasons, but you could google BLUE LIGHT kills MRSA.

When you are dealing with any illness which ends in itis (hepatitis;arthritis;meningitis) simply means inflammation.

One example of my using blue light, a friend of ours came out for a visit. He is red hair, very pale skin.
Of course he wanted to go to the beach. By the end of the day, Mr. Lobster Man !

I used 40 minutes of blue light which removed all the pain and he was able to fulfill one of the items on his bucket list!

A live performance of THE ROCKY HORROR PICTURE SHOW. You would not have know that just a few hours before he was burned bright red and almost immobilized!

Earlier posts show where to get books etc. on this subject

trader758 said...
Thanks all. My digestive issues started way before abx treatment, and for the most part, have gotten better with abx. My doc wanted me to try fiber before. So I bought Metamucil. It actually made things worse, my digestive system really slowed down, to the point he thought I may have a blockage. But I didnt. He then put me on another fiber called Benefiber. I bought the Walmart brand instead. It worked, sometimes too well, so I quit taking it. Maybe I should start again.

Hi trader! First, I'm sorry you're still struggling but I think there are answers for you.
Your MD isn't going to be very helpful in solving your GI issues. Most don't know much about nutrition or the GI track. This is something you'll probably have to figure out on your own or w/ an ND - we can also help you.

Stay away from the regular, sugary, sugar-substituty, crappy and filler-filled digestive products like Metamucil and Benefiber.

Binder
Psyllium husk is great but if your GI issues are as bad as you say (and it would be very helpful if you described them so that we can be more specific in response) it might be a little too much fiber for you. It was for me. It's something to keep in mind later on but for now I'd incorporate copious amounts of water (no kidding at least 64 oz at the very minimum and a lot of this should come after a binder) and use a solitary ingredient binder to get things moving and detoxed - try activated charcoal or bentonite clay - you can get these at any health food store.

The best stuff I've found is PURE cholestyramine = CSM (I've never been more regular, with more regularly formed BM since incorporating CSM) but it's expensive. It's well-worth it for me.

trader758 said...
Something weird happened the last 2 days. I cant explain it. I had this pain just above my gallbladder. It would come and go. Never lasting more than a second. It really bothered me and I kept rubbing the area. I thoight to myself, this is too far right to be heart related, too high for gallbladder, could be liver or just muscular. Yet everytime I rubbed it, I could not feel any soreness or pain or anything really. It just felt like a nerve spasm with pain. Well, and I know this isnt good to do when youre taking abx, but I had a sugar craving. A BIG one. So I ate 6 Reeses peanut butter cups. Guess what? Pains gone and never returned! Has to be a coincidence right? If it was referred pain from the gallbladder sugar would have made it worse I would think. The liver, im not sure what sugar would do to it. And muscle or nerve, sugar wouldnt effect either I would say. Like I said, cant explain it. Kind of freaks me out.

My relatively informed guess (not because I am a qualified specialist! But because I spent 2 yrs studying yeast/fungus) is that the pain/pang in your gallbladder area was your body's response to needing more sugar. I used to have those kinds of stabbing, short, weird, intermittent pains all throughout my torso before I got my yeast/fungal overgrowth under control. The pain could be due to inflammation, too, which is so very common w/ us lymees with all of the infections we're battling and all of the meds we're taking.

But my bet is on a yeast/fungal overgrowth issue (that might have been present before abx). And from your description, it's systemic. The y/f can inhabit any nook and cranny in your body. It needs sugar to survive and it creates the sugary cravings - sugar cravings are not a natural occurrence in our bodies - it's the y/f doing the thinking for us. It's not just a desire for a certain food, the y/f can literally create a chemical need in the brain. Many alcoholics are also battling y/f overgrowth and once they nip the overgrowth in the bud, it's significantly easier to address the alcoholism.

But the die off that can occur if it doesn't have sugar to feed it can be just as bad - if not worse - than the y/f symptoms itself. In fact, when die off occurs, it can be significant. A little bit of die off can be like the tiny pains and can cause nausea. And a lack of appetite is also common w/ y/fungal overgrowth.

Priority
IMO - I think you should address the y/f overgrowth first before moving forward with lyme & co treatment.

- The symptoms due to y/f overgrowth are very similar to symptoms of Lyme & co, which can make treatment experience that much more overwhelming and also create difficulty in decision-making when you don't know which is causing what symptoms.

- Also, we need our immune systems to participate in our treatments - no herbs or abx can heal us on their own. Y/f can cause considerable damage to the gut, which can cause the issues you're describing and since 70% of our immune system IS our gut, it can challenge our treatment.

- And since nearly every component of our treatment is taken orally gut damage can literally sabotage our very expensive and much-needed treatment.

Antifungals
So you have a need to reduce your y/f load now and a need to prevent it from becoming an issue during abx treatment. I think the best way to do both is with a local anti fungal Rx (PURE Nystatin powder) and a system Rx. With an existing y/f overgrowth it's almost guaranteed that continued oral abx is going to be an ever-present trigger for continued y/f overgrowth. Some people can manage abx w/ natural antifungals but they usually don't already have overgrowth.

The systemic will help reduce the overall load and the local will help prevent the y/f from growing from the abx you're gearing up for. Here is more info - there is a lot to read but I think it will be very helpful for you to make progress to that next level of treatment:
url]www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

I also agree that it might be a good idea to incorporate herbs - either along with abx (this is what many of us here do) or instead of abx. There is a learning curve for this but there are MANY very experienced people o this forum who can help direct you and there are a couple of good resources online as well.

Also - I wanted to ask you about something unrelated to Lyme - if you're up to it please email me!

I hope this is helpful.

-p