posted
Sorry for posting again but I have just been diagnosed as late stage neuro lyme after years of wander... I know and I can feel those damn little bugs in my collagen tissues.I can feel them moving through my brain and nerves... How the heck will I treat this? Abx will not get to them... I already supplement with vit C, collagen and glucosamine but please, has anyone found anything to reach lyme spirochetes in the collagen tissues? I just spend my days crying on how this is all unfair and why we did not find it earlier... But I don't wanna die, i used to be a pretty happy filmmaker and now I'm just like in a prolonged death sentence... Thank you very much for reading.
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I think you should get to a good doctor. I don't believe that lyme at any stage is a "death sentence" I can recommend a very good on in upstate NY who deals with cases such as yours.
Posts: 339 | From Outer Space | Registered: Aug 2009
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Shahbah, Don't panic. Miracles can happen.
Our daughter is a prime example of this. She was ill since early childhood and was not diagnosed for 25 years. Heck, Lyme wasn't even recognized yet back in 1973 when she got her tick bite.
She was so ill that she missed all four years of high school on the home bound program -- no legalized home schooling back then -- and had to take the GED to graduate. Things went downhill after that, if anyone can imagine it.
Fast forward to her diagnosis in 1998. It took nearly 10 years to find the right combination of treatments for her co-infections, but she is totally and completely well now, at long last -- symptom free and antibiotic free for nearly two years, come this December. Furthermore, we no longer worry about Lyme relapse anymore, and I'm finally starting to exhale.
Do NOT despair. You've got a diagnosis, so now you can begin seeking proper treatment. This is a time to celebrate and rejoice having a diagnosis, not a time for despair.
Unfortunately, I don't know how many good LLMDs there are up there in Canada, so you might have to travel south of the border into the US to find a good ILADS doctor to manage your recovery.
Oh yes, and antibiotics DO indeed work. In fact, the newer antibiotic combinations work even better than the old out-dated protocols did -- which is probably why you've picked up the false notion that antibiotics do not work. False, false, false.
Study Dr. Burrascano's Treatment Guidelines as a good place to start.
posted
Oh thank you so much for your answers! I know I should celebrate I finally got a diagnosis but it's just sooo difficult... I am certainely not going to have propoer treatment in Canada , so I made an appointment with a pretty famous LLND , who also prescribes abx in Portsmouth and then I am going to Boston to hopefully see another LLMD... I am just so tired and in pain all the time, these bugs have eaten all my collagen already so I need to find a way to get them out!!! Thanks again for your time and I hope you're all doing well.
Posts: 723 | From Montreal | Registered: Oct 2010
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Montreal, huh? Too bad you have to travel so far. But if you're seeing Dr. H followed by THE Dr. D in 'Beantown', you will be in good hands.
Note: You will likely find they might disagree on the need for Some of the 'supportive supplements.' Otherwise, "ah bleeve" they'll have similar/ complementary approaches.
Remember- It's gonna take more than popping abx. Carefully managed diet, slowly ramped up physical activities & lifestyle changes are all crucial in making a full recovery.
Be awares that you may be in treatment for a couple years, or more. It's a long road for sure but you will look back on these as the 'dark days'... when you're back outside filming in a couple/ few years.
I recall paddling out on the Atlantic in my kayak on a warm sunny day & feeling wonderful... less than a year after late-stage symptoms whacked me HARD. NEVER thought I'd reach that point.
I did. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Honey, don't panic. I've had Lyme and co for at LEAST 22 years and only got dx a little over two years ago. (very likely that I got it from birth and then reinfected. I also had RMSF, mycoplasma, West Nile virus, mono... and likely Bartonella. And here I am, feeling pretty darn good. I went from very very sick to very very functional in these past two years.
Is there a reason you can't take antibiotics? I have been on monotherapy (only one med at a time, low doses compared to most people) and have gotten very well. Not cured, but WELL.
I had every symptom under the sun.. tremors, seizures, hyper reflexes, heart palps, heart racing, tingling all over, internal buzzing sensation, nystagmus, babinski sign, neuropathy, and muscle twitches galore head to toe. Those are only a FEW of my symptoms... not counting the cognitive issues, joint and muscle pains, fibromyalgia etc etc. First being diagnosed with MS, then "possibly ALS" and Lupus or Scleroderma before finding out I had Lyme disease and coinfections.
You CAN get well! It's a slow long road that usually gets worse before it gets better.
My husband, twin sister and all three of my children have Lyme and we are all doing pretty well.
Find yourself a good LLMD. And add herbal protocols (I have been off antibiotics for a month now and doing natural alternatives for awhile and still doing fine) But if at all possible, you really need to start with long term abx to really hit it.
Don't panic. Many many many people have Lyme disease, and they don't even KNOW it! At least you know and can act accordingly! Panicking and getting yourself all worked up won't help you. Take a deep breath, and get on through it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
I went through 25 years of undiagnosed Lyme disease, yet within one week of starting my antibiotic, my fibromyalgia pain went to zero and my joint swelling greatly decreased.
We're all different in what we respond to. I had an antibiotic in my drawer that I knew I was not allergic to, clindamycin, and that's the one that's doing the trick for me.
I then went on to discover more remedies that treat my symptoms.
You should not despair. You have a job now, to discover the remedies that are going to treat your symptoms.
You can study here, including using the Search box to type in anything you want to learn how others have treated. You will need to pay attention to what you respond to. And you can work closely with the LLMDs.
Posts: 13171 | From San Francisco | Registered: May 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Set your mind to working thru the worst and you will make it happen.
You have to become a warrior to fight this,
know your enemy and how it works on destroying you, so you can counter, and in the end of your journey
You Win....
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
There is a good doc who is from Montreal who practices in Upstate NY. PM Sent.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
you know Shabah...have a good cry! a great cry! then dig in and get on with your treatment!
I was one of the misdiagnosed for over 30 years and two years ago I couldn't have typed this or scrolled down to read this thread...I couldn't spell my own name! But don't be fooled...this is life or death and you have want to win cause this is hard work! remember you have bugs in your brain and that effects your mood..I take Selegeline 4mg and lithium orotate. Check out www.selegeline.com for info on depression and how it helps protect your brain! it has made a HUGE difference for me!! check out almost all my posts I mention it...
-------------------- AzDaisy life requires action Posts: 58 | From Tucson, AZ | Registered: Apr 2010
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posted
Wow, thank you so much for your great support!!! I can't wait to start my treatment, and yes I will defintely use abx, herbs, exercice whatever it takes to recover because I think this is a war and I have to win!!! Thanks again
Posts: 723 | From Montreal | Registered: Oct 2010
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onbam
Unregistered
posted
Do you have an LLMD? ANtibiotics do help...I'll send my newby message.
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
It will be a long road (for me too) but we just have to stick with it and we will get better. Lyme and co-s are so darn tricky.
posted
Sent PM. I am in Montreal too.
Posts: 250 | From canada | Registered: Oct 2007
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
You've already heard some good advice above, and some very encouraging stories. I just wanted to let you know you are not alone - and you are in very good company! The people on Lymenet have become very dear to me. This is the safe place to come to share your fears, successes, questions, etc.
Your journey is just beginning. Focus on getting well, and KNOW that you will. Then, just think of all the people you can help and inform when you get there. We all need to work together to shine a bright light on the truth of this thing.
Wishing you all the best, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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