posted
Hi all, this is my first post. Please bear with me.
I've been sick for about two years, diagnosed with Lyme in Feb '07 (though so far only 4 of the CDC-critical 5 WB bands are positive for me -some ++). I started out on 200mgs doxy daily, went to 400mgs in April after a tough relapse.
Before treatment, I was bedridden and incapacitated with every symptom under the sun. After a few herx days, I literally felt the doxy take hold and stop whatever was happening to me in its tracks. Thank God. When I went to 400mgs, I started to see bigger improvements, and to be able to function again - sometimes even giving an imitation of a 'normal' adult human being!
Now we're in mid-Oct, and I've been taking this stuff for 8 months. I am so much better off than I was, but not entirely well. Many of the worst constant symptoms are gone, but come back sometimes at lower intensities. Some have totally disappeared - but a few new ones have arrived in full glory! My most troublesome constant symptoms are the negative change to my vision, my cognitive & functioning problems, and onging lack of normal stamina.
I would be so appreciative if some of you would take the time to share your experiences with getting better, or perhaps even getting well. How long did it take? On what meds? Two steps forward, one step back? Any tricks for keeping the faith? I really am just interested in anything anyone can share - sorry to be a taker, not a giver at this point in my Lyme experience.
I should add that before being diagnosed with Lyme, I went through the endless loops of testing - often several times - 2 spinal taps, multiple CTs, MRIs, etc. so all of the other suspects were eliminated prior to the Lyme diagnosis coming down, so I think we are all pretty confident of the diagnosis at this time.
Thanks for your time and interest.
Future health and happiness to us all -
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Onthemend,
First, I'm glad you found this place and glad to have you onboard. Not glad you have lyme, but glad you are here.
Not being a doctor, I think the first thing that caught my attention from my own personal experiences was when you were talking about some new issues that have come about since your treatment protocol.
The first one you mentioned was eye related, which would send up a flag to me in asking if you have been tested or treated for any of the co-infections since I know that eye issues are a very common symptom for bartonella.
Since I'm still in the treatment process, just a few months ahead of you, I really can't help much on that account. I'm sure others more experienced will chime in, but I did want to welcome you and wish you luck in your recovery process.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
It is nice to read about your immediate success with the medications. Unfortunately, it is not uncommon to experience new symptoms. If it were me, I would also check for viral and/or fungal issues if you have not already because these are also common. Viruses can contribute to lack of stamina, fatigue and seems to come up off and on for me.
I was able to overcome a serious form of meningitis as a result of this disease and for awhile progress was only about 3-5% each month. It took about 1 year to feel like I had come out of the danger zone, and then another year of fine-tuning, so to speak, a process of which I am still engaged in. But I feel sooo much better.
Make sure to utilize the search function key to look for information here also.
Best wishes,
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Hi -- welcome! -- we all have various experiences here to share about what has helped -- for me, malic acid and magnesium gave me energy back, I guess because the Lyme bacteria robs us of magnesium.
And for my eyes -- I was dealing with light sensitivity, eye muscle pain and blurred focus -- I drink mangosteen juice, which is anti-inflammatory. It stops all eye symptoms for me. I like the Ultra brand, but there are various brands of it to try. If you try it, you need to drink a lot of water too.
Posts: 13116 | From San Francisco | Registered: May 2006
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
I too am doing very well. I was first diagnosed in 8/05 and for 5 mths treated under a doctor using homeopathy. That stuff was incredible. Within 30 days all brain fog, migraines, hearing loss and neck pain were gone. Only the neck pain ever returned. Joint pain however, increased and when I was diagnosed with RA, I had to go another route.
I resisted the immune suppressing drugs and opted instead for low dose mino which has helped many RA victims put their disease into remission. This dose does not deal with lyme but rather mycoplasmas. The rheumy was reluctant but agreed to prescribe. I then found a doctor who is a member of ACAM. We began testing to see what was really going on with my body. We found heavy metal toxicity, yeast and bacteria.
This doctor did not believe in abx, so he was not interested in identifying the exact bacteria. He has found that if you can bring the body back into balance, the body deals with the microbes. I really thrived under his care and went from a high moderate RA to a weak positive. The rheumy acknowledged that while he doesn't understand a thing I am doing, it does seem to be working as I am nearly dormant. That was 04/07. 05/07 I was bit again and within 48 hrs sick again.
This time, since the bite was new, I headed to a wellknown LLMD who I knew would use abx. I wanted to knock it down quickly while continuing all the natural care I had learned from my first doctor. Hitting it from both angles can only be a good thing.
Well, I am happy to say it didn't take 2 mths to get me back to feeling better than ever. Believe it or not, we haven't even begun "lyme" treatment. What made a huge difference was treatment for H. Pylori.
Even though I had just taken a course for this bacteria in 04/07 (this was at my request. I have had this before and felt I had it again)it seems the standard 2 week course of abx was not sufficient. In fact, I still had a pretty heavy infestation. This did NOT come from the 2nd tickbite. It has probably been with me since I first treated it in 04/04 and must have been a big contributor to my downfall.
Testing also found Babesia W-1, QFever, EBV (I was in an acute flare of mono when the blood was drawn - which account for the symptoms that occurred following the bite) Even though this LLMD believes lyme is also in the mix, so far I only have a couple of positive bands.
I feel so good just from the HP treatment that it is unbelievable. The natural route was also dealing with the issues but natural does take longer. The end result with natural though is said to be that once you are cured, you remain so until reinfected. Certainly taking better care of our bodies will help us deal with future infections of any kind. You can't live in a bubble.
The abx which definitely have their place, are quick acting and for now doing me a lot of good. It remains to be seen if I relapse like so many others. I don't believe that will be my story because I am doing so much more than just abx. So, for now, I am practicing both and feeling great.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
My recovery has been like molasses. I have been in treatment for about two years and had the lyme and babesiosis and bartonella for a very long time before diagnosed only getting the upper hand on me for a few years at the end.
I could never believe the treatment was actually going to work I was in such a horrific state. I could never believe it could be possible that long term antibiotics were really the answer because the progress was so painstakingly slow and the cyclic nature of the disease always pulled the rug out from under me. Just when i thought I had made progress....Boom, back again.
Once I got a handle on the deceptive nature of this disease, as in, the memory issues always making me think I was crazy and always preventing me from being able to trust my own experience especially in the face of doctors who kept telling me it was nothing.
After two years I think I actually have the bartonell mostly kicked and am really far into getting the babesia taken out.
I am not confident that my memory will ever fully return, or my hypersound sensitivity of some residiuals of all this. In other words, given the severity of my condition at its worse, I will not seek antibiotic treatment until all symptoms resolve because, in my case, I do not believe it is realistic. Some of my symptoms will also require other things in addition to antibiotics. This is just my current opinion, subject to change.
I did all of this with IM and orals and alternative therapies as well. No IV.
After two years, I am starting physical therapy and this is not anythign I could have done previously.
I've done much additional to antibiotics and also am a firm believer in the necessity of adressing my own psychological realm and any unconscious stressors that perpetuate things, the hard stuff that needs to be dealt with in my life.
The whole thing's done a real number on me. And so much of it was not documented.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME WELCOME!**! !*)*)!*!)*!*)*)!!!!
My recovery is WONDERFUL!*)!*)! It took 18 months of abx to get to that point though!!!!!!! But I have an active, lovely joyous full life today*)!*)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
And I value it SO much more than I did before I got sick because I know how lucky I am now-!!!
WELCOME(*)!*)!*! !*))!*)*!)!
Sincerely,
-------------------- 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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