posted
Well I'll start by Introducing myself. My name is Keith and I'm a 32 year old male living in NH. I've been living w/ Chronic Fatigue and a myriad of other symptoms ever since 1997 when my health took a U-Turn for the worse. I have, like many of you and others out there like us, have seen about 100 doctors and only ever coming out with more questions, never answers.
I was even tested for Lyme (Via the Elisa) twice with "negative" results. Every Dr i've ever seen has asked me if i've been tested, and it's usually their 1st question after listenin to my story. Up until recently, i was pretty confident that i was clear....
Then i decided, one day, to do some more digging and found this site, and through the support groups link i found a local guy and talked with him, and he recommended a LLMD in my area. I've since seen her, been diagnosed via the Western Blot (Bands 31, 41, 39, etc) and clinically and am currently stating up a treatment plan. ALmost 15 years, and yet another promising diagnosis. I just hope, this time, it's the right one.
I'm sure i'm not the only one who was actually RELEIVED to be diagnosed w/ Lyme. But, as with all my other Dx (Sleep Apnea, CFS, Fibro, Candida, Vitamin Deficiencies, etc, etc) I'm cautiously optimistic. So i come to you, as peers, for confirmation of my Dx. and affirmation of the Treatment Protocol provide to me. Now, i realize you're not doctors, and am not seeking a "2nd opinion", as it were, but i'm lokoing for guidance through relating symptoms and history, as it's you guys who know best...and probably more so than some doctors..
So. I'll try to be as BREIF as humanly possible, but in order for you to provide advice and relate, i need to give you my history, symptoms and Rx protocol.
History:
1997 - Senior Year HS - Had major panic attack that started the downward spiral of health. Persistent, debilitating Anxiety and panic attacks and was houseridden my entire senior year. Saw 10s of doctors and was eventually Dx'd w/ Panic Disorder and prescribed Antidepressents (Zoloft). I cant remember where i put my keys sometimes so i couldnt tell ya if i had a tick bite. But i live in NH and partied/played in the woods my entire life...so it's very likely.
1998-2003 - While I eventually learned to "cope" w/ Anxiety and my panic attacks dissolved, I had several symptoms progressively get worse. Fatigue, Neuro Issues (Light Sensitivity, Visual Disturbances - Trails/Ghosting, etc), Cognitive issues. I was able to "coast" through College and Life...this became a theme that would progressively get worse
2003 - Present - Was Dx'd with Sleep Apnea and continued to pursue the Rx of that problem for many many years with no success. Surgeries, CPAP, Oral Device, Medication, etc, etc all gave no releif. Instead, symptoms progressed.
Currently i deal with a laundry list:
Fatigue - I literally drag myself out of bed and can't wait to get back to sleep at night..but cant cuz i'm wired at night...perfect Visual Disturbances - Trails/Ghosting Images Light Sensitivity Sound Sensitivity Skin Sensitivity Brain Fog Constant Underlying Anxiety Sleep Disturbance Frequent Urination Random Pains Weak Muscles Balance Issues Weird twitches (face,eyelid (left), extremeties) Trembling Hands (occasional) Restless Leg - At night and/or when severely tired Irritability shortness of breath during light activity heart palpitations GERD ("repaired" by surgery) The list goes on and on...but can't remember all of them ..oh yeah Memory issues! (Mostly short term)
I'd say the scariest and most life altering are the fatigue, cognitive/memory issues and the visual disturbances. They're my "baseline" symptoms, if you will, and how i guage how my day is going to be. These are the ones that have gotten markedly worse over the years and have NEVER gotten BETTER..all others seem to come and go as they please. I have OK Days, and bad..but RARELY do i feel "good", if ever. As we all know, GOOD days are ones that we can actually function and engage with others... I used to be able to drink alcohol and that would make me feel better. But the hangovers were so insanely awful that i stopped doing that so often... and now alcohol makes my fatigue and trails so bad that i actually get scared.
Anyways. My new Lyme Doc is pretty adament that I have Lyme, as well as Bartonella and possibly other co-infections. But since my symptoms are primarily neurological, she wanted to start off by treating the co-infection first.
So here's my Rx Protocol
iFlora Antibiotics - 2 @ 2x/day Oil of Oregano - 2 drops @ 2x/day Garlic - 1 @ 2x/day Alpha Lipoic Acid - 600mg/day Fish Oil (ProOmega) - 2000mg/day SerraPro - 1 @ 3x/day Magnesium Solution - 2T @ night before bed Fiber (Psyllium Husk Powder) - 1 scoop / day
Total almost $200 for supplements that, if i take as directed, will only last me a month at best.
And for my AntiBiotics
Zithromax Bactrim
I dont have the doses but my wife just picked them up and she said my insurance max's out at 36 pills (usual CT is 5). Bactrim was cheap though she said. That was $55...
So that's $250+ for treatment, plus $120/visit to my LLMD that there is NO WAY I can afford...but can i afford not to?
So i've started up with the supplements regime as of Sunday and started back on my Candida Diet (or as close to it as I am willingn to go at this point. No alcohol, no bread for bread sake, no sugar for sugar sake (Meaning i'm not having doughnuts but will eat crackers and cheese on occasion).
I'm also finishing my bottle of OPC-3 that i got from my Chiropractor (who is another $170/mo).
Ok, so not so brief..but that's my story. I was going to separate this into many separate posts as i have a lot of questions, concerns and am very nervous about all of this...
Thanks for any and all insight into my situation, words of encouragement and honesty..
Thank You all..it's good to have a place to be...
Keith
Posts: 47 | From NH | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome, sorry you had to find us, though.
I don't have the energy to read it all now but will later. I did want to caution that your chiropractor needs to be totally lyme literate - so that he/she will not do any quick twists to the neck. That can be disaster for a lyme patient.
Also, I don't see any obvious liver support such as milk thistle. Thinking that maybe the SerraPro was liver support, I looked it up:
� Serratiopeptidase is an enteric coated protein enzyme that promotes a healthy inflammation response. "
While that may help the liver it is not the kind of liver protection that Milk Thistle and NAC can provide.
I'll check back later. I hope you get some good replies. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Let's tack on a few more of those symptoms shall we?
Inability to concentrate Apathetic (Let's go to Disneyland!!! ... eh) Loss of libido Loss of appetite Bloating Bags under eyes tingling in tips of fingers INSANEly terrible hangovers (feels like someone took my guts out, blended them up and shoved them back in me) All symptoms worse after drinking Achy legs after drinking (day after) Static shocked by EVERYTHING Metal (worse in winter) FULL head feeling (like i want to put a valve with a release on it and let some air out) Word reversal can't read without tearing up (and i'm not reading sad books..lol) Inflammation EVERYWHERE itchy/tingly skin tinitus occasionally EXTREME sensitivity to Mold (had MAJOR bout with mold issue in my house..thousands in remediation and home improvements... not feeling acute symptoms anymore..
I also failed Ritchie Shoemakers VCS Test pretty handidly. For what that's worth. I even went through ALL the hoops to get Rx'd Cholestyromine... to which i was unable to take because it caused irritation/swelling in my throat....lovely.
I've spent years of my life, 10's of thousands of MY $ (cant imagine insurance $ but who cares), hundreds of hours of research.... and have just "gotten by" in life for the past 15 years.. it's time for answers...results...
posted
SerraPro i was told was an aid to help break down the Biofilm so that the Abx were more effective. Also supports inflammation. I wasnt given any specific Liver support supplements (i forget her reasoning, maybe she didnt want to overhwhelm me any more than i already was).. but was told to drink 1/2 my body weight in Oz of water / day and take the fiber to promote the elimiation of the toxins.
When i was on a Candida Diet/Supplement program, i was told activated Charcoal was good. I mentioned this to her and she was hesitant, again, i cant remember why.
My chiro is not LL as far as i know. He does do quick neck snaps but nothing i've had any adverse reaction to (one way or another). I am now down to 1x/week on my program. I havent seen any negative or positive effects. I'm thinking of stopping my visits, but i just feel like it can only help...but at $170/mo..it's tough to justify at this point.
I also have a Hot Tub... Is that as effective as a Sauna?
Thanks!
Posts: 47 | From NH | Registered: Oct 2010
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posted
Keebler -- can I ask where you got the idea that chiropractic can hurt lyme patients?
Posts: 707 | From Colorado | Registered: Jul 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To clarify, I did not intend to say that chiropractic can be bad - but that SOME of the techniques can. But only LL doctors know that. That's why it's best to see an ILADS-educated LL DC or LL DO.
� It's the quick neck twists that can spell disaster. Or any sudden jolts to the spine at all. Or to any joint, really, if nerve damage is present (which it nearly always is with lyme).
� Many with neurolyme have lyme meningitis (inflammation of the vertebrae of the neck and also lyme encephalitis (swelling of the brain). The brain stem is often very compromised with neurolyme.
A quick twist of the neck can cause some very serious damage to the neck and to the brain of someone with neurolyme.
Not all chiropractic styles use the sudden twist of the neck. Upledger is one that does not. Feldenkrais is also a safe method.
I have had many disasters from chiropractor and even a couple NDs who did neck and spine adjustments. The sudden twists have triggered seizures and months of not being able to talk or walk. But I did not connect the dots for the longest time.
I later read from good sources exactly what I now caution about but I do not recall the source. I remember the light bulb going on when I read that, though.
I have also had other DOs or NDs, or LMTs do some fabulous body work that did not entail sudden jerking of very tender and inflamed tissue. Where the back, neck and head are involved, they need to be treated very gently.
� Another reason: spirochetes HATE to be disturbed. And sudden bursts can cause them to burrow even more deeply, expel more toxins from their irritation and then go into the cyst form out of their shock reaction.
� The adrenals also really take a huge hit from sudden twists and turns of the back, neck, head. It can be very shocking.
� Demyelination is another reason why sudden twists can spell damage, even permanent damage.
Demyelination is a frequent result of neuro-lyme. The myelin sheath that covers and insulates the nerves is often compromised. Sudden jolts and twists to the neck, or anywhere on the spine - or any joint - can cause more damage to nerves that are infected and inflamed - and possibly without all the protective coating.
Gentle is good. Sudden shocks are not.
Lyme is just one of several Demyelinating diseases: ------------
A demyelinating disease is any disease of the nervous system in which the myelin sheath of neurons is damaged. This impairs the conduction of signals in the ...
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
BODY WORK links are also included with hints on how to find LL doctors (DCs, DOs) and physical therapists and massage therapists. -
[ 11-23-2010, 05:58 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
phorts - You could be my long lost twin!
I have about 1/2 of your symptoms and most of your diagnoses. Let's see: CFS, FM, EBV, depression, insomnia, sleep apnea, adrenal exhaustion, nutritional deficiencies, heavy metal toxicities...
I was exposed before my senior year of college, but my health didn't begin the downward spiral for another three years. I never saw a tick, so I didn't know I'd been bitten.
My exposure-to-diagnosis (AKA Medical Misery Tour) was 18 years. I also feel that I gave up 15 years of my life (closer to 20 if you include treatment time).
Your symptoms and (mis)diagnoses point straight to Lyme and co-infections. You may also have opportunistic infections like viruses, yeast, other bacteria and parasites. There is also a retrovirus being implicated in causing CFS and Lyme symptoms.
Do your homework. Watch the documentary Under Our Skin. Read Cure Unknown, by Pamela Weintraub.
You are on the right track.
Learn about herxing. That's often how we get better. The antibiotics kill off the microbes, and symptoms get worse for a period of time. Then there's some relief, then more herxing, relief, more herxing...
And it takes time to get well. With a 15 year infection, plan on several years of treatment. (Sorry.) But you will FEEL BETTER during this time. I have treated for 2.5 years, and if I watch my lifestyle (diet, exercise, sleep), I feel 90% well on most days. I am still on antibiotics.
Spend some time here on Lymenet. You will find your symptoms everywhere, even the weird ones like alcohol intolerance.
As for the expenses, make it work. You must have money for the LLMD and antibiotics. They are the cornerstones of treatment. You'll need some of those supplements, too. Probiotics, definitely. As for the rest, you'll figure out what you really need and pare down from there.
And you'll need to detox. Read some detox threads here. As the spirochetes die, they release neurotoxins. Our bodies can break down some of these, but during your worst herxes you'll have more neurotoxins and inflammation than your body can handle. That's when detoxing is essential.
Take a deep breath. You are off the misdiagnosis treadmill. Lyme is tough, but not nearly as tough as the useless doctor treadmill.
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Here's some explanation on your supplements:
iFlora - probiotics, replaces healthy gut flora killed off by antibiotics Oil of Oregano and Garlic - antimicrobials Alpha Lipoic Acid - brain and liver support, anti-inflammatory Fish Oil - brain and joint support, anti-inflammatory SerraPro - enzymes, degrades biofilm and thins blood, anti-inflammatory Magnesium - needed for many metabolic processes, we are all deficient Psyllium - binds the neurotoxins
This is a good program. Ask your doc about Vitamin D. Most of us are deficient. It's an excellent anti-inflammatory.
Also watch the documentary Under our Skin (www.underourskin.com) There are clips on youtube as well. You can probably get it from your local library.
Regarding the treatment. Looks pretty solid. My only suggestion would be to add Amantadine or Plaquenil to the Zith / Bactrim. Zith should be used with either Amantadine / Plaquenil to help raise cellular PH and drive the lyme out from the low PH areas of your cells. Also..where is your cyst buster? Maybe your LLMD is starting you out slow and steady since you've had it so long. But sooner or later (sooner is better) you should be on Flagyl or Tindamax to break up the cysts that lyme will convert to when confronted with the Zithromax.
I'd say lyme and Bart are likely as well.
Regarding the cost..yes, lyme is an expensive disease. It is called the "rich man's disease" because of the cost. But nothing is as precious in life as health.
-------------------- 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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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Hey phorts! Welcome!
I read what Keebler posted above about chiropractic treatments and I understand. It's up to an individual what they want to do. My chiro doc knew I had Lyme and had treated another woman with chronic Lyme who is well now. My neck was so bad.......
Look, I think you are 'right on' with your chiropractic treatments. I didn't start really getting well until I started intense treatments 3 times per week. He focuses on the neck, which was good for me cause C-1 (the top spine bone) was pushing against my brain stem! No wonder I was unable to heal...after 5 adjustments it was an uphill climb.
Not everyone agrees with it, I'm just saying it worked for me. No more herxes after adjustments. If you are still getting adjusted it's a good idea. I'm sorry you've had such a struggle all these years. Sounds like you are in tune with what's happening.
Keep fighting and don't give up!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I agree that this should be in Medical Questions. You may get more responses there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
31 AND 39? Hmmm... it all sounds like Lyme to me!
If only ONE of all those doctors you saw, had repled back, "Oh... Well, the standard Lyme test is pretty unreliable as far as the ELISA part. Have you ever been tested via the Western blots to see if you are + for any Lyme-specific bands?"
Of course, you would've said, "Gosh, I DUnnO!!" & he would've started you on a trial course of doxyxcycline & had you back for a blood sample in 3-4 weeks, which he'd send to a tick-borne disease specialty lab, like MDL (NJ) or IGeneX (CA) for testing.
And if you did indeed Have a 'smoldering' Lyme infection, you would of "herxed" (Jarsch-Herxheimer reaction) like crazy on that 'doxy' & he would've gone, "HUH!! I Guess you DO have Lyme!"
But the majority of primary care M.D.s are still woefully under-informed, or mis-informed, about Lyme. SO MANY, like you, fall throught the cracks & end up in late-stage Lyme hell.
Fortunately, if you're under the care of a good LLMD, you will likely make a substantial- if not complete- recovery and get this infection into "remission", as we call it, & live a pretty damn healthy life!
The BAD news is it will likely take many months... maybe even a couple years... of abx therapy, diet & life-style change & much education to get you there.
Welcome on-board & I hope you all the best. in a a "speedy" recovery. (It's all relative )
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Keith welcome, my story is very similar. It is so sad to hear this over and over again.
I just visited with a LLMD for the first time today and he told me this is pretty much the standard.
Now I don't know about you but this is very depressing, and speaking of depressing imagine how many people that aren't as proactive as us think they are going nuts and feel like the only way out is ...sad.
Well, just wanted to say hi and welcome, I am fairly new to the forum also. This place is really great. Everyone is very active and willing to take time for you. In fact, that is how I was able to find my doctor without driving to Wis! Many thanks all!!
Now lets kick some bug butt!
Fuel
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I love Kete-Tracker's post! So true and it sucks!
Sorry you've had to find your way here, Lyme is tough, especially with co-infections and everything else! Not sure if you or anyone else said anything about it but get tested for Co-infections as well. Co-infections also can be clinical though as well.
I have Bart, without a doubt, am treating it and am herxing. Also my first "avalanche" (when it all came crashing down) symptoms were all Bart symtpoms. But I tested negative for Bart and babs.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
A note on Chiropractic. I'm a big fan of "gentle" chiro. But "twist and shout" of the neck and / or jaw is not good in my opinion.
I crashed BIG TIME in March after getting my neck, back and JAW (big mistake) manipulated. Not exactly sure why other than it kicked a hornet's nest of sorts.
I now do Axis Orthogonal (an Upper Cervical / NUCCA technique). Much more gentle.
-------------------- 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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