posted
I have been ill for 4 years and in treatment for 3.5. I have seen three different LLMDs and am currently with the heavy hitter in NY, Dr. H, and have been with them for about 18 months.
I am really not any better. My symptoms are mostly neuro (severe brain fog, short and long term memory loss, inability to concentrate, brain shocks [or whatever they are!] every single night for 3.5 years straight when trying to fall asleep at night, and the list goes on).
And, recently, I seemed to have acquired more “typical” lyme symptoms…arthritis in my thumb from a recent tennis injury that doesn’t abate, tennis elbow that won’t heal, a ganglion cyst on the bottom my foot, sore knees/joints, etc.
I have had two bouts of IV antibiotics, ranging from 7-9 months each, numerous months of oral antibiotics, bicillin shots for months and thousands of dollars in supplements and alternative treatments like acupuncture!
At my recent appointment with his PA in NY, she said that I need to do all kinds of testing now…repeat brain MRI, Spect scan, heavy metals testing, sleep study, along with NUMEROUS other tests.
AND…she said that she thinks that my brain damage/problems are probably going to be permanent. Talk about taking the wind out of someone’s sails?!?!?!
I’ve been spending thousands on lyme treatment, treks to see LLMDs, etc. only to be told that I probably have permanent brain damage from it and to get more testing?!?!?!
Why even bother with the testing then…spending yet MORE money, when they think that it’s all permanent damage from the lyme!?!?!?
And, to top it off, about mid-visit, she suggested a trek to Germany for hyperthermia treatment? ‘Starting to think that this is just a money-making scheme for all involved!
Any thoughts? Just REALLY bummed…discouraged…out of money…and wondering why I spent all of this time and money on high-powered LLMDs
which involve travel expenses, non-insurance paid appointments, non-insurance covered meds and supplements and alternative treatments…especially
when, three and a half YEARS into treatment, they think that it is probably permanent damage and nothing can be done!!! And…why even think for a second to spend even more in the future!!!!!???
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Dear Tri, You and I and many others suffering from Lyme disease are in the same boat. We can't get better no matter how many "experts" we see or how many therapies we try. I, too, believe it's become a money making scheme for a few. Can it get any more depressing? C.P.
Posts: 106 | From Colorado | Registered: Jul 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Sometimes I think we all need to take a step back and say I cant do this anymore and just quit for awhile. I know some people cant but it may be worth it.
Lyme can financially ruin your live not to mention personal life.
Sounds like its time for you to reevaluate where you are.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I was in a similar situation and left there after 2 1/2 + years.
I'm making progress again. Don't give up hope. I did a few times. Quite a few times.
My second LLMD treated me from my first visit and to the amazement of my ophthalmologist, my severe bilateral Iritis resolved within a couple of months.
He was not a "top notch?" LLMD.
I'm on my third in addition to other docs and am making good strides.
PM me for further info as I don't want to be the cause of your thread being closed.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
wow, trialtheticlymie, your story sound like mine except I did 5 yrs massive antibiotics and everything else under the sun with big time lyme docs in NYC
I'm into my 7th year now treating this horrible illness and things have turned around remarkably for the better. At my lowest pt, my lyme doc told me there was nothing else he could do for me and I was scheduled for my 3rd round of IV and a port (I, too, am all neurolyme)
This was the changing pt for me, I met a wonderful group of people who sat me down and had what I call my lyme intervention
My body was so bad at this pt, I had one foot in the grave, and they turned me onto a whole group of holistic docs. I starting rifing (very , very slowly) Went to a great doc near me who helped me detox and clear the toxins from my body who I still use weekly
This has been the only route that has helped me, and there are many others who I have met that have literally turned around there lives
I'm not bashing anything, it's just for me rifing and other holistic modalties have saved my life
Please pm me if you need too, I'm in pa
Posts: 298 | From usa | Registered: Aug 2009
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I see the same llmd for the same amount of time as you. I have been sick for 10 years. Fellow triathlete as well.
I found high dose abx helped to a point and then it was diminishing returns on my progress. Now I focus on candidas and parasites which has helped more then abx.s at this point.
For me, as an athlete, I make great strides when I can get out for a hike or run. There are times where I feel a flare coming on and will take abx.s for just a week or two.
Are you on any Byron Whites? No doctor or pa or np is 100% correct so try not to give up based on what she told you. Perhaps it is time to take a couple steps back and re-assess. Even the best llmd is not the best for everyone. Don't give up...
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Your mailbox is full. I'll reply tomorrow.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Can you have the Dr solely treat you instead of the PA? I had to switch when I wasn't making progress.
The treatment is not the same.
The PA is awesome. Just in my case, I had other things going on that were discovered when the Dr took over completely.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I also seek answers in other places when I hit a wall. I still keep my LLMD, but add other things as an adjunct.
daynise found a really great Integrative clinic an hour and a half from me...(Thank you daynise) They are Lyme "friendly", meaning they don't treat Lyme, but aren't freaked out by my medical history.
Anyway, I just went there yesterday and am going to work on reducing inflammation, improving my immune system and detoxing with them. (IV Glut, IV Vit C, sub q mistletoe, maybe Gaby's/Myer's cocktail IV, etc)
My thinking is if I can get my immune system stronger, then it can start fighting for me. Lowering inflammation and detoxifying can also only help.
I guess once your liver screams "ENOUGH!" you have to look into other treatments besides multiple abx.
I'm also doing Far Infrared sauna.
Now, I only take the supplements that I know are helping me. That helped my budget, so I can take that $ and get the IV nutrients. I don't think I was absorbing much anyway, so I was throwing $ down the toilet.
The sleep study is a good idea. If you aren't getting sleep, you will feel like crap.
posted
What does the PA think hyperthermia is going to do? I have never heard it being used for lyme.
If the PA thinks your damage is permanent, I would not waste my time at that clinic. I would go to the AMEN clinic in Washington, DC.
Dr. Amen deals exclusively with the brain. He has seen thousands and thousands of spect scans and could help treat you.
I am sorry, tri that you are having so much trouble and not making any progress. It sucks.
Posts: 538 | From kentucky | Registered: Nov 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I know, I am in a similar boat and have been for years. I think that stupid telling you things are permanent is totally ridiculous and I don't know why ANYONE would say that to you....THEY DON"T KNOW.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I know, I am in a similar boat and have been for years. I think that stupid telling you things are permanent is totally ridiculous and I don't know why ANYONE would say that to you....THEY DON"T KNOW.
Posts: 3528 | From US | Registered: Apr 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I think its time to look elsewhere. I know it's not what you want to hear. But many do not get well on antibiotics and need to take a different approach. If you have been on antibiotics for 3 yrs its definitely time to seek out alternatives. At this point to keep attacking your body with antibiotics that are clearly not helping is probably doing more harm than good.
For his PA to say what she did shows her lack of intelligence and that alone would convince me to go elsewhere. I definitely wouldn't spend the time or money repeating tests. Save your money.
Chances are after all these meds you are dealing with candidates and leaky gut which has also probably caused food sensitivities.
Posts: 1747 | From United States | Registered: Dec 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I like everyone's posts above. If something is not working you should try something else. And I agree, no one knows what is permanent on you. You have to push forward.
I have tried so many alternative things that I never thought I would try. They all have helped. You just have to keep trying until you find what works for you. The latest on the board is HBOT. I haven't tried it yet, but think it's worth considering since it helps autism kids.
Do you have any amalgams? Getting them out has been one of the best things I've done. I would get your heavy metals tested, but I don't know about the other stuff.
Also, have you considered proto or parasites? Practically every doc misses them. Once I started working on parasites, the parasite meds helped my neuro stuff, which turned out to be babs related (of course, babs is a parasite).
Here are some proto symtpoms that Nefferdun posted on a protomyxzoa thread:
There are some PR symptoms that do not overlap with other infections such as nasal congestion, pain in the teeth or jaw, stabbing nerve pain (not mentioned), and ho**** voice (also not mentioned). Other symptoms not listed are bone, muscle and joint pain (protomyxzoa RHEUMATICA). I think that list comes from Dr. C and is posted on the internet.
How can you tell if it you have PR? You may have insomnia, bladder irritation, irritability, anxiety and twitching and think it is bart. You may have hot flashes, sweating, headaches behind your eyes, body pain, profound fatigue, inability to concentrate and air hunger, diagnosing babesia. However with babesia you would be oversleeping, not insomnia.
However now and then you lose your voice, talking like there is a frog in your throat. You get nasal congestion, perhaps thinking you have developed an allergy. Sometimes you get a stabbing feeling in one tooth like you have a bad cavity but the dentist doesn't find anything. In winter your hands, feet and nose are so cold you just can't keep them warm. You get stabbing or tingling nerve pains in various parts of your body.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
triathletelymie, I tried to send you a PM but your mailbox is full. Please let me know when I can send it.
Posts: 4680 | Registered: Oct 2000
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posted
Sorry everyone.....I cleaned out some of my mailbox....should be good now....
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
I hear ya on all this...but thanks to the wonderful people here at LN I jumped shipped with antibiotics and drugs and what not after 6 months b/c felt I was getting nowhere and getting drastically worse. Tremendous weight loss, even more symptoms piled on, it was INSANELY difficult to tell what was a herx what was a side effect..it was not pretty.
And yes many did say keeping going, 6 months is nothing but I just had this gut (hah whatever was left of it) feeling that there was more to it then just bombarding myself with drugs.
Sent you a pm.
This is a very long insanely winding road for some but I believe it can be better. Keep digging, keep looking, keep trying. It took me a few doctors, many appointments, many therapies and I think I finally found the right path which is what's most important, yet for some most difficult to find.
Posts: 183 | From ... | Registered: Oct 2011
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posted
i think you need to look at KPU and detox....and i don't believ this is permenant for what its worth....
like everyone else here i am/was in similar boat and went holistic as an adjunct....had an ART study done which revealed Babesia!!! which was never treated, KPU, Heavy metals....
i am now addressing all of these and making progress once again..
a lot of what you mentioned as being an issue points to co-infections....
and what i've learned after 5 years is that we have to stop believeing what we read....so many of us on here never had a night sweat or air hunger yet so many have babesia....
so throw that out....increased inflammation. cogntive issues that will not relenet all point to coninfection even if you don't have the textbook symptoms...
just my two cents,
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Uh, get rid of the doctor that said it was permanent. That doc doesn't want to take the time to help you.
I've had three LLMD's. I really liked the last one, but he was forced to retire.
Keep trying. There's always someone out there to unlock the door to wellness.
Posts: 1954 | From Illinois | Registered: Aug 2007
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I also seek answers in other places when I hit a wall. I still keep my LLMD, but add other things as an adjunct.
daynise found a really great Integrative clinic an hour and a half from me...(Thank you daynise) They are Lyme "friendly", meaning they don't treat Lyme, but aren't freaked out by my medical history.
Anyway, I just went there yesterday and am going to work on reducing inflammation, improving my immune system and detoxing with them. (IV Glut, IV Vit C, sub q mistletoe, maybe Gaby's/Myer's cocktail IV, etc)
- You may want to speak to daynise again for her update.
Triathlete.. I think going the holistic route at this point would be a good move. I'm all for abx in the beginning, but a switch has to be made at some point if it's not working.
Rife could be key.. so could intensive work on the body with alternative methods.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 95672 | From Texas | Registered: Feb 2001
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posted
hi, i'm not sure if Ketek is still on the market because i'd heard about possible liver damage, but my brain fog cleared up within hours of taking my first Ketek...see if you can find it....
Posts: 274 | From NY | Registered: Jun 2005
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posted
Could the PA have been saying that you probably have SOME permanent brain damage?
My husband was told (by a different practitioner) that he may have permanent damage. But that didn't mean that treatment was fruitless. It was just to prepare him for the fact that he might not get 100% better.
It sounds as if you're ready to make a change anyway--either to the Dr or to another place entirely. But even if you go, it's still important to find out if the PA really meant that ALL your problems are probably from permanent damage.
IF she did, then some of the tests she suggested may have been to locate the damage in order to assess the best course of action. People with brain damage can still improve--at least when their brains are not under assault.
Posts: 431 | From New England | Registered: Dec 2011
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Still declining.....now not able to work again! REALLY down! Just don't have the will anymore to keep fighting, with no return whatsoever....
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
The ONLY tx that turned the corner for me after 4yrs of abx was going after parasites. Don't understand why these doctors don't get this VERY, VERY important tx.
Dr. K. treats parasites FIRST and Lyme and cos SECOND. Some of these ticks are carrying the Filarial Worm co-infection.
This is what came out of me when I did aggressive antiparasitic herbs and salt/c. www.lymephotos.com Review the PARASITE WARRIORS SUPPORT THREAD and google parasite symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I agree about parasites- I think they can hold bacteria, and until they are eradicated, and the liver, intestines, organs
really clear, it can go around and around again.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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