posted
well, My lyme was dormant for 7.5 years. NO FATigue - I was full of energy. NO brain fog, no muscle twitches, spasms, eye floaters...... Nothing for all those years, except stiff neck and headach, which lasted 2 months, then went away (took prednisone). Lyme came out 7 months ago, right after surgery. I felt the lyme in my knees, the location of my surgery (miniscus tear). Both knees burned, spread to legs. 4 months after that, got water sensations from knee (like fluid gushing down legs), then burning spread to upper body, head burns, floaters...and now, every thing in my body cracks, bones, cartilidge,.... everything, everywhere..even when I walk, my hip cracks... So, after 2 unsuccessful LLMDs, I found one in NYC who follows Dr. B's protocol, and is aggressive. I began treatment with him August 26, 2007. Started me on Levaquin for bart, 500 mg everyday. 1 week later, I began bicillin shots, 1.2 million units, 3x week. Now, It is October, what changed? well, 2 symptoms cleared completely...no more pimples on body (thinking that was a Bart thing), and no more bloody stool (internal hemoroids). But, what increased? the cracking of everything in body,...It is freaking me out. My knees pop when I bend, grind... and of course, the rest of my body pops too. And I still have all the other symtoms. I would say, I had 2 days where I felt a pain of level 5. I felt hopeful those days , last week. But, I think the bicillin is only hitting one form of the lyme, the cell wall form, and I need other drugs which will hit the l-form, and syst form. My llmd mentioned babs and flagyl. but, I don't know, I am losing hope. I read people herxing, then get relief, what is this relief, 100% relief on the good day? I don't get that, I am in pain 24/7. I am worried that they lyme is spreading, even with treatment, can that be? I am going to see my llmd tomorrow, what do you suggest I ask him (I already have 2 pages of questions, but more the merrier). I feel like I am never going to get lyme out of my knees, my muscles, cartilidge...brain (no brain fog, but burning and water sensations). does the bicillin hit the BBB? Jenin
Posts: 455 | From Maryland | Registered: Jul 2007
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tailz
Unregistered
posted
That's what seems to be happening with me, although right now I don't think I have any LLMD.
When I first started Rocephin, I actually had a few hours here and there where I'd felt spectacular, but then I slipped again after they had to stop the abx because of elevated liver enzymes. When they restarted the abx, I didn't feel any better - only worse - and not worse and THEN better.
Same thing happened with mino - I could feel things draining through my ears, but now nothing. I just continuously feel worse, and it seems when the seasons change, my bugs rotate. Having to ration my abx with no LLMD isn't helping. I probably am creating super bugs.
I have noticed that these symptoms seem to worsen, too, when I am in front of the computer, when I drive, whenever I am exposed to any electromagnetic source. I think electromagnetic sensitivities work along with these bugs, so I would suggest you investigate that possibility. Like you, I have lost hope, too.
I think cell phone towers are behind chronic Lyme. Upon exposure, these bugs have a field day. I know because this morning I'm sneezing green.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Jenin, I'm sorry you are feeling so awful.
He may add another oral to your regimen.
But you may be in for a rather long haul.
Two months is really a very short time in treatment for what seems a very entrenched case of lyme.
I really still felt like death warmed over at six months!!!
At one year, I discovered I had babesia WA-1, and kind of started all over!!!
There are no shortcuts, I'm afraid.
Please don't lose hope. Progress will come. You've had a few decent days. As you continue in treatment, you'll have more and more. Setbacks will happen, but so will progress, even if you don't realize it for a while.
See what your doc suggests. But please DO let him know what you're going through.
Let us know what he has to suggest, ok? You're on the right path.
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Yes the Bicllin will penetrate!!!
You did it before. I know soemtimes I think if it hit hard again I couldn't take it, but you sound like you are doing everything you need to do. It's okay to feel hopeless. Just sit on your hands if you feel like doing anything about it in a bad way. In my experience pepole who get full remission once are more likely to get it again-
Hugs to you- best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I am sorry you are having a rough time. We need a lot of patience to get through the first stages of treatment. I am not a doctor, these are just my observations.
quote: got water sensations from knee (like fluid gushing down legs
I get this feeling - like water running down my leg when I have a trigger point in my hip that is pressing on a nerve. You may want to see if you have a trigger point somewhere that is compressing a nerve.
The popping and grinding is likely caused by inflammation due to die-off. There are supplements that you can take to help with inflammation such as serraflazyme and rutin and I think quercitin is one as well as bromelain. There are many others as well.
Many if not most of the symptoms we have are related to toxins created by bug die-off. This may be why you think the infection is spreading or it's possible that you have another infection (co-infection) that is surfacing. If you aren't already dealing with these toxins you will want to research how to deal with them so that you can have an easier time in treatment.
Look into Biotoxins - take somethig to bind them such as cholestyramine. Use something for lymph drainage like red root tincture. When bugs die they release metals. Take something to bind them and remove them from your body. Take something for liver support. This is just a start and a very complex subject that you will want to get help on from your doctor or a knowledgable Naturopathic Doctor.
Hang in there and keep learning.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
It is a slow process. I have good days and bad days .... my good days are not as good as I would like. It takes a lot of time. Slow and steady is the answer .... even with aggressive treatment it's slow and steady. Unfortunately there is no quick cure.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
i got this today, and thought it might fit your occasion ok!
Click on the "years ago" and watch a beautiful story. It scrolls by itself after you start it.
posted
I can relate,big time!! I'm back to this board after 6.5 years of perfect remission. I just had a massive return of symptoms last month and am waiting to see my LLMD in 2 weeks. I think an incredibly stressful event in my life brought it back depite my thinking it was gone for good. Did your doc retest you? I was + for western blot,luat,bab. and erlich. after a tick bite in Africa in 1999 but they didn't realy know about the other stuff back then did they? I hope CaliforniaLyme is right- that a long remission can be repeated. Hang in there - the best thing I have learned from all this is to have the right attitude. I fell apart emotionally during my illness and am convinced I suffered more for it. I hope this helps to know you're not alone.
Posts: 2 | From jacksonville | Registered: Oct 2007
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