posted
I'm just wondering about the percent of people who eventually recover most of their function after a TBD, versus those who remain fairly disabled, despite years of treatment.
Some article I read said that 20% of Lyme patients never recover. One of my LLMD's said 2%. I'm guessing it's higher than 2%.
Are there any distinguishing factors on those who recover versus those who don't?
I'm searching for this information to decide if it's worth throwing another few thousand dollars into IV treatment, or if I should just give it up as a lost cause after 3 steady years of medication, with very minimal improvement. Before I drain my 401k, I'd like to know there's still hope.
Posts: 168 | From Delaware | Registered: Aug 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You may or may not decide to continue IV treatment, but please don't give up in general.
There are always other avenues, other approaches.
This link may be of interest about a treatment in Germany with a Bionic 880:
Topic: Where did the "Successful Infra Red Treatment" thread by Gigi go?
look for lymie_in_md - for he is working to secure a machine for a group in Maryland - it's in the future - but it might be something. And it would be nearly next door to you.
More to learn.
Best of luck.
-
[ 24. June 2008, 05:46 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
there is much to look foward to other than abx.
IVIG may be something to look to before IV abx.
altho, IV abx have a lot of potential for active infections.
the questions remains, how much of what we have is an active infection versus the host's response to so much stress?
best of luck. you will get well with the right treatment and approach. it takes time. much longer than you or i would like.
hang in there
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My LLMD has a 90%+ remission rate.
Doesn't do IV's.
I hope to be in that number one day.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I will be glad when we have the data to answer your question.
I recall talking to someone with CALDA about getting some data together when I was first dx back in 2003.
At the time they needed someone who had programing abilities.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Daze
I think the sucess rate is close to 75% or more-
There is 16,000 registered LN users- at any one time I think there is 2000 or less people Active here on LN -
Something happened to the other 14000 users- They got well and moved on with there lives-
Have you made sure what Co Infections you have-
Co infections will slow down recovery until they are treated also --
I got almost no where till I treated Babs ALSO-
From what I have seen I think about 75% of lyme patients have Babs also --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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ByronSBell 2007
Unregistered
posted
95-99% of all lyme patients have bartonella
This is why I was never getting well, I also found I had mycoplasma, and several viruses.
posted
Keep up your hope. A positive attitude goes along way towards getting well.
Byron, How is the clinic? Are you feeling better?
Blessings. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10176 | From Illinois | Registered: Aug 2004
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Like Kam says, there isn't any official study to document this.
I know 7 poeple like you, that had been in treatment for three years with little improvement. All of them now are much better. 5 ended up on IV abx for 6-13 months. six of them had Babesea and/or Bartonella, which also had to be treated, along with the IV. The other two did BAcillin shots I think.
I don't know who your doctor is, but it might be work your while to see a "top" LLMD. There are a lot of good LLMDs, but sometimes it pays to see a LLMD that has been treating Lyme and associated diseases for a long time, and has treated hundreds of patients. Just a visit or two for some recommedations.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
To be able to answer that .. no answer but if we did.... we would have to factor in how disabled people were before getting treated.
Some may have damage that can't be reversed... leading to a life of partial to total disability.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If talking "only" about Lyme Disease, the number is about 10%, however, "well" vs "better" is another story. Nearly all patients get better, -- all in-fact, but only when the entire picture is taken into account. 10% of patients don't respond to conventional treatments in a profound way, and thus are the hardest to treat.
Often Lyme Disease is treated as a single entity. This is unfortunate, because, ticks carry so many things, and human beings can be exposed multiple times to multiple infectious diseases, which accumulate and of course overwhelm the body when the camels back breaks.
Lyme Disease is one of those organisms that can bring down the whole system, causing other prior infections to take root, or allowing new ones to. Like a house of cards, the body falls when Lyme hits most people.
Unless co-infections are treated, as well as Lyme, and the person's immune system and overall wellbeing, patients may not "get well." -- we know enough to get everyone "better" from the infection itself, but we don't know how to repair a lot of the damage done in more significant cases -- spinal cord, brain damage, joint, etc -- some cases. We also don't know how to eradicate the infection once it's entered various parts of the body, like the joints, and adapted to the hosts immune system. This persistence is the cause of Chronic Lyme Disease at it's core. Even a strong immune response, a good diet, a solid repertoire of antibiotics, and a whole body approach to treating the co-infections, patients can still face ongoing persistent infection, and thus not be cured.
Each case is different, so to claim there is no cure, is absurd, but to claim all cases can be currently cured is tremendously absurd.
Sadly getting "better" doesn't mean much. If you move from 5% functional to 6% functional as a result of treatment, you're "better" -- but you sure the hell aren't well.
Hope that makes sense.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I was having treatment for Lyme disease for 18 months and showed some but not very much improvement, and then got very unwell. I switched LLMD's and he ensured I had a high detox regime and treats co-infections before Lyme. Since Jan this year my improvement has been continuous:-
I was on 3 months CSM/actos and then added I.V. Glutathione 3 times per week Loads of Detox vits Weekly colonics with rectal refloridisation + I.V Antibiotics for Lyme & Bart
It was not until the detox issue was looked at that I made any improvement and I could not tollerate any AB until this was sorted - I am now on High dosage IV AB's
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
OBJECTIVES: To survey present knowledge and controversies in European neuroborreliosis.
Material and METHODS: The article is based on available literature, own experience, and a speech held by the authors. together on the Norwegian annual neurological meeting.
RESULTS: Diagnosis of neuroborreliosis is based on clinical neurological findings, laboratory support of borrelia infection, and indications of causality between neurological findings and borreliosis.
In the absence of means to identify B. burgdorferi, antibody tests are used for laboratory diagnosis.
Two to three weeks courses of IV penicillin or ceftriaxone are highly effective in neuroborreliosis. Oral doxycyclin is probably equally effective.
***Remaining symptoms five years after treatment for neuroborreliosis are reported in 25-50% of patients.***
CONCLUSIONS: We suggest two levels of diagnostic accuracy; definite and possible neuroborreliosis. These case definitions are proposed to make the basis for treatment decisions.
The prognosis of neuroborreliosis and pathophysiology of post-treatment conditions need further studies. Extensive treatments with antibiotics are not recommended.
CONCLUSION: Patients with antibiotic-refractory Lyme arthritis have high synovial fluid levels of proinflammatory chemokines and cytokines, especially CXCL9 and IFNgamma, throughout the illness.
Thus, even when antibiotic treatment
reduces
or completely clears the infection in these patients, the inflammatory response in synovium persists.
PMID: 17393419 Arthritis Rheum. 2007 Apr;56(4):1325-35.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
In my opinion we need to do the following to increase our chances of recovery/remission:
Total change of lifestyle: no alcohol, tobacco, junk food, processed food, sugar, sugar substitutes (except stevia).
posted
I really appreciate your reply to a nebulous question. I have been through a number of the things you suggested.
I did remove my mercury fillings, heavy metal detox, Bio-set, addressed Erlichia (now positive for Myco & treating that as well), massage, Epsom salt baths, monitoring yeast carefully & using appropriate meds if signs appear....
Yet, I am still frustrated in my recovery, and I've asked every doctor I've seen "What else could it be if not Lyme?"
I used to be so positive I would get well, and quickly. But, now I'm not as confident. It's not that I'm depressed, or pessimistic. I just want to be realistic about my future.
You brought up a question about permanent damage, which I will start another thread on.
Posts: 168 | From Delaware | Registered: Aug 2005
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
InADaze, perhaps you could list your remaining symptoms and people on lymenet could give some suggestions as to coinfections/treatments which you might want to investigate further...
Posts: 1155 | From Southeast | Registered: Oct 2005
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Maybe you have to think outside of the box & try something completely different?
I have no health insurance, very little money, & I've drained that IRA account... so I understand.
There was no way I could afford to do any IV abx - or even orals ones. I stopped because I couldn't afford to go on, I didn't want to stop & go with abx, & because I just didn't feel they were right for me, anyway.
There may be alot of alternatives that (maybe) you haven't tried yet (?)...
$crew that... I'm going to get better one way or another. I'm not giving up - yet!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I admire your spunk Sparkle. I used to have the same attitude, and it returns to me every now & then.
I take about 20-30 pills a day with my medications & supplements, plus the IV Rocephin. At this point, I'm totally confused about drug interactions.
Thank God for good health insurance. I was so lucky I worked with a great company when I relapsed, and I am on their retiree plan because I am LTD through their policy.
What other non-medication options are there? I know I heard of 880, rife, and HBOT. Unfortunately, I am not sure my budget can handle any of those either.
I mentioned my major symptoms in another post, but I'll relist them here.
Chronic Insomnia leading to exhaustion Severe fatigue on exertion Vertigo Depth perception challenges Migratory head, muscle & nerve pain (mostly low level) POTS GI issues leading to poorer nutrition (some are under control now)
Also, though non-disabling:
Peripheral neuropathy Tinnitus Intestinal pains & gas General muscle weakness Hip symptoms that make walking painful, especially when walking up inclines Floaters Low grade fevers Headaches, including migraines Photosensitivity Irritable bladder Poor concentration Difficulty following conversations, especially when other noises around me Difficulty reading on PC or books requiring more brain power than light fiction (yeah, I guess this really is a disabling symptom)
Co-infections: I was treated for Erlichia, suspected Babesia (Mepron), and am now taking Biaxin for Mycoplasma.
So, the only major co-infection they didn't DX is Bartonella. But, I did have an odd streaky rash like stretch marks on my stomach that has gone away with several months of IV Doxy treatment. I think that is a sign of Bart, but not sure.
I think in many ways, being ill this long is taxing on me because I was always such a high energy person. I would work 50-60 hours a week then take a drive to go skiing all weekend. Now, I console myself with memories of my activities (when my memory is cooperative).
I'm trying not to be a total downer. I just need to get realistic. If I am not going to get well, and if the Rocephin doesn't help my husband, I'm eventually going to go bankrupt if I don't change a few things.
That's why I was asking for stats on % getting well. I do know it's hard to quantify. But I am afraid I'll end up in that small percentage who has debilitating Lyme (or Fibromyalgia) forever.
Posts: 168 | From Delaware | Registered: Aug 2005
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Angelica
Unregistered
posted
I for sure am no expert but the sleep issues and digestive issues could easily be bartonella.
You might try taking ginger capsules for digestive issues they have certainly helped me a lot.
I also think Buhners herbs for bartonella do help with pain/inflammation in joints and they also seem to help me fall asleep better. The red root tincture he recommends I feel is very important.
I have heard that the Cowden protocol has helped many people and I am interested in trying that at some point.
Have you done activated charcoal or Cholestyramine yet for lyme and or mold toxins?
I feel New Chapter's mushroom combo has also been helping me especially with immune issues.
I have also noticed Spirulina helps my fatigue a bit.
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's hard... I go with my intuition alot. I don't like drugs - I've tried them but they just don't seem to help me.
The only drugs that help me are oxycontin, vicodin & Excedrin. I'm not against drugs but they just don't seem to do anything helpful for me. I've tried...
So, alternatives are my only recourse.
Maybe you're too toxic from taking all of the drugs. I'm NO doctor but maybe you could simplify things - even just for a short time to clear yourself out a bit. 20 - 30 pills seems like a lot. Are they all drugs or is it a combination of things?
I have no idea of your medical history so if this is off base - just ignore this advice.
I don't think I have the co-infections so I may be in a simpler situation. I also had tests for things like mycoplasmas, viruses, etc. & I'm not too bad.
I don't think it's a good idea with Lyme to combine herbs with abx. Just my personal opinion.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I tried the Cowden protocol without results (unless 6 weeks of vomiting counts as results), so I haven't gone back to them.
About half of my pills are antibiotics or pain/sleep management. The others are supplements, Like Vitamin D, Theralac, Milk Thistle.
I don't drink or smoke, and I push myself on activities. Pushing means a couple minutes on the pedal exerciser or a few trips up and down the stairs. Occasional visits to stores, using a cart to hold me up.
Ginger sounds like a good idea. I should try that. I did try cholestyramine at one point, but for some reason, they took me off it. I forget if it was an adverse reaction or not.
Thanks for the ideas. Keep them coming!
Posts: 168 | From Delaware | Registered: Aug 2005
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Angelica
Unregistered
posted
Activated Charcoal may be work better for you then the Cholestyramine did and it also helps ones GI tract and pulls out toxins too.
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