Right now I am in excruciating pain and have been for nearly three weeks. I was diagnosed with Lyme in 2002 after being incredibly ill since 1999. I first had swollen lymphs, followed by pnuemonia that would not respond to abxi of any kind, eventually dropping out of school and beginning the travels through so many doctors and specialists I cannot begin again to even repeat.
At this time I have heart problems and brain problems that showed up on cardiology and mri.cats.
I am still undergoing over a year of antibiotics for lyme from this specialist in Missouri who charges too much for me to afford. I have been gradually getting better, then worse. I went on IV abxi in Aug 2007 and just got my picc pulled a week ago. I am unresponsive to pain killers, have tried the "pain free diets", the various acupuncture treatments, TCM, etc, etc.
I have lost the feeling in the left side of my body, had bells palsy, at one point in 2006 could not read or write, and still suffer from fogs, though I regained my mental capacity in late 2007 after IV primaxin for 3 months.
Getting to my point-
I had never even heard about this until this morning, as I was searching through chlamydia sites for my ex boyfrined(who gave me some mixed breed chlamydia/ gonorreha/ngu back in 2005 that led to a full herx then relapse of my lymes).
And as I read this site I realize that when I first got sick I was told that i had "walking pnuemonia- in1999.
And I don't remeber a tick bite or bull's eye rash until 2001. But I do recall camping over a weekend with this pnuemonia still in 2000. And being so sick and in so much pain that I thought I would lose my mind.
I was diagnosed over and over and over again with respiratory problems ranging from bronchitis to pnuemonia to asthmai, allergies, pluerisy, and then with porpheria, arthritis, nerve degeneration(no explaination), muscle spasms, ...
Here was my list in 2000-
pnuemonia, bronchitis, fibromyalgiai, depression, attention deficit disorder, infected lymph nodes that must be from my bra(even the ones in my groin?), allergies.
Here's the list in 2001-
migaines, (also include the above), arthritis, numbness, visual disturbances, fainting, tachycardia, seizures, pain, insomnia, fatigue, confusion, nausea, vomiting, fevers, etc. in2001 I had a bulls eye rash on my lower back.
IN 2002-
allergic to everything I touched, strep throat, staph infectionsi, acne , chronic swelling of throat lymphs, back pain, kidney infections, bladder pain, disk degeneration, sinus infection, hallucinations, hearing loss, conjunctivitis that would not quit, failure of any anti depressants, memory loss.
2003- after doxyi for nearly 6 months for lyme I seemed to improve, I did have herx reaction and did regain some mental function, though I developed chronic fatigue and was told to see a neurologist(again), cardiologist, and rheumatologist.
I could not see any because the Neurologist decided that i was insane.
2004 period of stress following loss of baby and boyfriend. Hospitalized at this point about 4 times for pnuemonia or pain. respiratory failure occured. Began pulse therapy for onset of Lyme again?...
2005- jerky boyfriend gives me std chlamydia/ngu/ thing that requires me to take several round of doxy, azytho, amox, flagyli,rocepin, and more. I end up in hospital w hyatial hernia from puking myself to death. scope and a ton of tests.sent home told I dont have lyme. bladder is in constant pain, and all Uro doc say IC, nothing, or, pid.
2006-
Bladder and repiratory dominate my system problems. Occasion
alaswelling of joints, nodes. Laction began. Adrenal dumping and panic attacks as well as anxiety began then.
Constant migaines, pain. Sinus infections that never stop. At this point I had never taken any antibiotic for more than 4 weeks. No IV for more than 5 days.
Developed a Gartner's Duct Cyst that I was "born with". Don't ya think I would have noticed it before? I had a lump in 2004 that stayed but was dismissed by everyone, eventually me until it began to block my ability to pee. SO... also sex was over for me.
Short of breath began, got worse, no explaination. Doctor began to push infectius disease to treat me for lymes with iV abx since I would herx as well as improve on certain abx. But off them.. whoa!
Pain became daily living for me.
2007 I found Lyme doctor , sold all that i had left travelled to see him and began the abxs that I mentioned.
Had eye surgery in 2006, knee in 2007.
After knee my whole body was wracked with pain and I was hospitalized.
I was still puking so I was put on IV Primaxin. Also I had hypercoagulation. Began heparin.
2008- Diagnosed with a heart condition that i supposedly was "born with" that caused my fainting, chest pain, tachycardia, dizzyness, vertigo, and migraines. Began meds last week.
Had a mri done that shows inflamation may have caused thinning of layers and shrinking of cortex???
anyway-this has been nearly 10 years and I am so tired I spend most days in bed, though I do not sleep.
I think I may be reacting to the abx, but now Iam only on Flagyl and a week of Keflex.
I was pulled off Lovenox(blood thinner ) after bleeding under the skin.
Oh yeah, and I died in an ambulance two weeks ago from respiratory failure and cardiac failure.
I ahve gotten to this point where I think I should have wiped clean the damn Lyme after taking:
Ceftin for 5 mos, vantin for 2, primaxin for 3, rocephini for 2, primaxin 500 for 6 weeks, flagyl for 3 mos, and all the others like doxy for about a year before and so on.
Now my hormones are like a woman twice my age. I have lost several babies and no longer date because the pain is unbearble if I get a cold I get sick for weeks. I still ahve bronchitis, my chest hurts, and I am sick to death of this.
After looking at this site I would like ot know-
what effect does CPNi have on Lyme?
What effect does all those antibiotics have on CPN?
What does HSV1 have to do with it?
Am I going ot die before a doctor who is not just thrilled to take my money and pass out bs and bail if theres trouble comes along?
I have not slept for days, I cant make sense.
I think I am dying from the abx, but I do not know anyone to turn to and I am constantly forgetting how to functioh.
Ok, Anyone, anything?
I swear I am not a nut, though i think that I ws pretty crazy for a whle.
And I think I am losing it again because I was treated for Lyme (thre pos western blots in 2002) and drowning in bills, and I had no clue about this stuff until today. I could just strangle about 30 doctors this morning.
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Boy, you are a tough one!
Rica PPMS EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA
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Rica PPMS EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 51 pulses NC USA
She, Read the Getting
She, Read the Getting Started module (Blue Tab at top of page)... It will give you an overview of what the Combined antibiotic Protocolsi are about.
It appears to be quite common for people to be infected with more than one bacterium or viruses. Luckily the CAPs can treat more than one of these infecting agents...
Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMS, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
She- [edited: opps.
She- [edited: opps. just went back and re-read some of your post. I had missed the part where you said you are seeing the lyme specialist in Missouri, so I will delete my sentence about that.]
After reading from the tabs at the top, you might see if your current LLMD would look at the Physician's info. and consider working with you on this.
From what I've read is that this protocol may resolve some of the lyme issues. other TBI's may need some adjustment, tough. I assume you were evaluated (not just tested) for babesia, ehrlichia, bartonella, too during the lyme treatment. If not, these should be considered as they are common co-infectionsi with lyme.
I hope your current LLMD will work with you on this. He may be able to contact the doctors at Vanderbilt.
Good luck.
Garth Nicolson, Ph.D., has a wonderful new article out regarding Cpni - and other chronic infections - that I am sure will impress your LLMD. see link below..
Good luck. This is a ton of stuff to sort through. Be sure to pace yourself. Take breaks away from all this, even if just to look at a travel magazine.
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http://tinyurl.com/preview.php?num=64y3rv
Chronic Bacterial and Viral Infections in Neurodegenerative and Neruobehavioral Diseasesi
Garth Nicolson, Ph.D. - May 2008 Volume 39 Number 5 LABMEDICINE - American Society for Clinical Pathology
if the tiny url does not connect, google the title. He also has a web site.
- and, pardon the changes in type size. I don't know what happens when I cut and paste. Tiny type seems to get a steroid boost when it's pasted.
Wecome She, I believe that I
Wecome She, I believe that I have had CPni much longer that Borrelia Burgorferi (Lyme) and am feeling stronger and clearer now approaching 1 year on the Wheldon CAPi. This is my first treatment and I anticipate being on some variation of this CAP for several more years continuously at least with my set of bacterial infectionsi. You are fortunate to have found this site just as I was. I will be looking for your posts.
Louise
CFSi/ME.CPnPositive.BbPositive.
WheldonCAPbegan6/24/07. Now NACi,Doxyi, Roxi, Full TiniPulses Cholestyramine at Bedtime for Phorphoria &l iposacaride Endotoxini Die-Off Experiences during post pulse cycle, generally for about 10 days.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sx, S.O.D.3TID(KAL Brand),VitD34000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.Summer2008signature.
She, welcome to our
She,
welcome to our madness! you are not alone, in fact, you are in very good company. I believe, this is a ticket to wellness, otherwise, I wouldn't be hear in my 11th month of treatment. I have had Lymes treated, but I am not sure if I have completely rid myself of it as I didn't improve after my 8 week treatment 2 years ago.
I do know this! I am getting better, slowly. It is going to be very important for you to go slowly. In your journey through this falling apart syndrome, you are quite ill right now!
So, come on board our crazy train & get better as soon as you can. Be prepared for letting some time go by!
Blessings
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#12 2 gm oops then 1250 mg 4 days 6-14-08She, hi. It seems pretty
She, hi. It seems pretty obvious to me that you have infected bra disease. If I were you I'd take out a class action on underwear manufacturers. Sheesh! The things some of these so called specialists come up with just beggars belief. And then to imply on top that you're insane! really gives you faith in the medical profession doesn't it.
You've had a heck of a time. There are others on here going through similar issues. As mentioned above, read through Getting Started (tab at the top of the page) and get a handle on what this involves. Nothing else has worked, this just might and given that you got improvements whilst on the abxi, as I did when I was first sick, it certainly looks like CAPi may be the route for you.
You'll also get the support and sympathy you need on here and none of us will call you insane. Welcome.
You might also like to have a skim through the info Keebler is putting together.
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAP 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008