I hate to write this out and admit it but I need your help. I've been ill eight years, probably longer.
Within the last several months have gone downhill quickly. In fact the pace has accelerated within the past couple months.
I've been disabled almost from the start back in '98. Was misdiagnosed for the first 3+ years before testing highly equivocal for Lyme in late '01.
Was on constant abx from '02 to '03 without improvement, in fact I felt worse.
We treated the co-infections, Wa-1 and Bartonella but perhaps for not as long as necessary.
3 mos. Rifampin/Doxy for Bart and 4 months Zmax/Mepron for Wa-1. Lyme abx included Zmax, Flagyl, IV Rocephin - 9 mos., IM Bicillin, Minocin along with a couple others.
My LD's practice was under financial strain and she had to close her doors in '04.
Since standard treatment didn't help I tried Rife, two different types of machines, herbals, ozone, you name it I tried it.
For those reasons I do not believe Bb is *the* major factor in my continuing decline.
WB's from Igenex showed fewer and fewer bands into treatment and a recent one from MDL showed no IgM bands and only 2 IgG bands.
My LD is practicing again and she ordered a WB along with Bartonella and Wa-1 antibody tests from Igenex.
All prior coinfection tests were negative including FISH, PCR, and antibody from Igenex. Always negative for Erlichia at Igenex, Bowen, Focus. Babs negative at Bowen.
The only positives I had was from Focus Labs which showed IgG to both Bartonella and Wa-1. Sonoma county Wa-1 test was negative.
I have a phone appt with my LD next week to discuss test results and treatment.
I know the unreliability of testing and she knows to treat for coinfections even if tests are negative.
Maybe my WB will show a bunch of bands like the first test and we will consider abx not previously Rxed.
I never herxed on abx, Rife, Samento, nothing, so my gut tells me it's a coinfection.
Yeast/Fungus has been checked in stool and blood many times, always negative. Gut is okay from functionality and testing.
So my question to anyone is, given the following symptoms, which coinfection seems the more likely culprit?
I feel as if I need to hit the ``nail on the head'' or.......don't want to go there.
Worst symptom by far, has been with me from the start, is my brain feels ``toxic/poisoned''.
This is the symptom that continues to get worse and worse. I recently had to give up driving the LA freeways due to that wasted feeling.
I'm lucky to make it to the market for a brief period. It's like driving drunk or on drugs.
At the onset this started first, it felt like I had a beer or two, then the fatigue came, had to take naps at work.
My sleep went as well, took me two hours to get to sleep then I'd awaken every couple hours. I still very much need meds to sleep.
I was also extremely nauseated, couldn't eat and lost 20 lbs the first two months. The nausea has gone away but I still have low appetite.
I don't have pain other than headaches. No tingling and only occasional numbness in my left thigh.
I have dry eyes daily but was checked out by Ophthamologist and no signs of degeneration or disease.
I do have memory loss but not severe. The fatigue isn't severe but is in corelation to that ``toxic'' thing.
I could do things but feel too wasted to do so. MRI's have been clear and Spect scan done last year was much cleaner than the one done in 2001.
Awaken every day with severe ``hangover''. When I wasn't so severe I could get active and it would lessen and be able to be active, but still disabled.
Now it's with me 24/7 and even lying down watching TV is a bear.
Basically it's all in my head along with minor leg stiffness. I do have occasional night sweats and shortness of breath but that is just recent.
When I read posts, along with Dr. B's guidelines, it appears I probably have either or both Bart and Wa-1.
No red rashes or sole pain to indicate Bart.
I've had just about every pathogen test you can think of and I just show past infection for EBV, HHV-6 and Echovirus 7.
I tried alpha and beta Interferon for the Echo and my titers went down but no symptom relief.
Maybe it's Bb and I need different CNS penetrating abx but I always read where it's a slow growing organism.
One would think that with prior treatment, *something* would have happened.
Of Bart and Wa-1 (Babesia), which is more apt to involve CNS without other areas of the body, or more importantly be responsible for the poisoned feeling.
Which one can grow quickly and cause symptoms to worsen fast! Of the two, if either, which one would you surmise is causing all this?
I understand that my LD and I will make the call ultimately but I'd appreciate any feedback.
I know Dr. B says excessive neuro problems are probably Bart., but can Wa-1 cause severe neuro problems without pain etc.?
Educated guesses and any input is welcomed. Thank you,
Tim
Posts: 52 | From California | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I had symptoms 13 years then the lyme took off and I got very sick very fast and became disabled. If i go off abx even a couple days I get soooo much sicker.
If you are having nightsweats, you may still have babs. Sorry I can't offer any real answers.
posted
Must confess-most of the technical stuff in your post was confusing to me-and I have only just begun this journey-been treated for two months.
All I can do is speak from personal experience. I am taking SAMe and Acetyl-L for brain fog, and Keppra for siezures. I often wonder if I am headed into La La Land of Alzheimers. It is so scary and overwhelming.
But typical, like today, after I get up, I must force myself to stay involved in the world. I have been put on disability-but I do volunteer work-in the church office. Today I felt so down and depressed I really just wanted to crawl back into bed and call it a life-I quit.
Still I forced myself to go to the church office. Cried all the way-mostly tears of grief, for losing myself, my life as I remember it, my orientation, my health.
The office manager knows that I need my tasks in order, well spelled out, a check list of tasks, with clear clear written directions. I am college educated and considered intelligent-but I am so lost in brain fog I need directions for the simplist tasks.
Anyway-the point of my day is that-after half an hour of being in the office and doing something-even if it was just pushing the start button on the copy machine I started to feel better-emotionally.
Getting outside of myself helped me to gain the momentum to keep going through the rest of the day. I am also fortunate in that a friend comes over every Wednesdy afternoon-just to be with me, and help me at home, and to listen to my fears, and cry with me.
My journey has just begun-I hope that my automatic pilot will continue to force me to stay involved in the world-once I isolate I am a goner.
So I can't give you any clear direction about medical treatment-all I can do is trust my LLMD and let you know how I made it one more day.
posted
You may not have been on abx long enough. I've read that Dr. B says the average length of time on abx for his sick pts is 2yrs.
If your LD says to go on abx again, you might want to try Ketek. I used Ketek w/Bicillin LA for about 7mos and improved a lot with it. I'm now on Bicillin LA along w/Tinadamax as a cyst buster, and am continuing to improve.
Who's your Ld? and do you know if you were bit in So Calif?
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Have you been checked for heavy metals? They can cause chronic fatigue and mental issues too.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Have you been checked for heavy metals? They can cause chronic fatigue and mental issues too.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Some people have found that treating mycoplasma or a stealth virus has helped them. You might ask your doc about these. Sorry, that is the only thing that comes to my mind at the moment.
I also had WA1 and it took 8 mos of treatment to get rid of it. However, I think that the first five months of malarone were underdosed. So, maybe it might not have taken as long at a higher dose. Artemisinin added to other babesia treatments has also been useful to some. Wonder if it might be worth asking too about switching to clindamycin +quinine. Some people have done this successfully, however the side effects are worse than with mepron/malarone + macrolide + art.
As far as your symptoms are concerned, I haven't a clue. It is hard to tell which ones belong to which disease.
Posts: 8430 | From Not available | Registered: Oct 2000
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Tim,
I know who your LD is based on your description. You and I may be in the same city, or at least close.
Here are a couple of thoughts just to add to your list of questions to ask her.
Dr. B's latest guidelines and a DVD I watched talked about new strains of Bartonella-like organisms that he is treating with the quinolones such as Levaquin. Some LLMDs use Cipro. I know Rifampin is for Bart, too, but these may be new strains or possibly not even bart but something unknown.
My LLMD seems to agree with this as a possible issue for me because of CNS problems. However I now have Achilles tendon problems, so consider quinolones very carefully, although my LLMD does not the quinolones caused my problem.
I agree with the post about heavy metals as a possible issue.
Have you talked to your doctor about using cholestyramine to remove neurotoxins? That sounds like a huge issue for you. I would think she will be aware of the doctor and his protocol for that. I have not used it but others have on this forum.
If you do go on Ketek,like another poster suggested as a possibility, have your liver enzymes checked very, very frequently. I am the one who has posted many times about almost going into liver failure from it. My hepatologist thinks Ketek will be pulled from the market. However, there is no question that it can really work well against Lyme.
In addition to that, it sounds like you are already toxic and you need to make sure your liver is in good shape before going on a drug that can strain it and prevent it from detoxifying properly.
Have you removed gluten from your diet or been tested for food allergies/intolerances? Gluten issues can cause neurological and gastrointestinal problems.
Please post when you have spoken to your LLMD. I would like to know what she recommends and I wish you the very, very best. I know what it's like to have incapacitating brain fog and nausea - I had it for ten years with chronic fatigue syndrome years before I was bitten by the tick.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
hi tim my guess would be babesia. are there not about 100 strains of babesia ( see article in aafp may 2001 by Dr M--i will pm you on this) -
because the U.S. is without proper labs tests we are not able to identify all of the strains -only 2 wa 1 and b microti.
some one recently posted microsccopic webs sites of babesia microsccopic -fascinating stuff - but a nightmaire for us. anyway - i have no suggestions about abx ( because i have not taken any.
only that if it is babesia you need to attack that bug every 120 day ( cycled because of rbc death)
my heart goes out to you we are on rocky road with these persistant bugs mags
Posts: 259 | From California | Registered: Mar 2006
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Thanks for the responses; when you don't respond and just continue to go downhill, you have to consider what is truly going on.
Patti - Dr. Y in SD. Have no idea if I was bit in So. Cal., never had a rash. I live in LA suburbia but used to mountain bike etc.
I was actually on abx for two years with no improvement, included in that time was treating Bart and Wa-1.
Luvs2ride - Yeah, had many amalgams replaced properly then did chelation for a year plus; didn't seem to be an issue for me.
lou - been down the Myco. road, tested + for M. Fermentans. Did six months of Doxy, nothing and all tests since are negative.
Wasn't the stealth virus thing discredited when no one else could replicate Dr. Martin's work and he withheld information from the group that gave him the grant?
Jill - I may revisit the Dr. S cholestramine protocol. I did it before but not every 4 hours or whatever it was. Thanks
I couldn't tolerate Levaquin, lasted only a week and even that was too long. Tendons were killing me; I was pretty disappointed.
Dr. B's "BLO" discussion is interesting, I thought his description of symptoms fit me, heavily neuro., I don't have the other symptoms though.
That's part of my question, can Bart. (BLOs) mess you up so bad that you're not only disabled but a complete mess?
I'm going to an all natural diet; perhaps I am allergic to gluten.
Maybe it's not Lyme related at all and I've considered that time and time again. Perhaps one of the viruses.
I'll report back next week, if anyone else had the severe toxic feeling and hangover and figured out it was "X" and "Y" helped, let me know; Thanks much,
Tim
Posts: 52 | From California | Registered: Aug 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi again, Tim,
I was just reading the thread on Yeastophobia and the responses of some people with systemic yeast which sounds very disabling and extremely dangerous.
You sound so knowledgeable about all the Lyme-related issues and have been through so much, so I presume that systemic yeast is already something you've considered. But that other thread caught my eye and made me wonder if there could be something there of interest for you.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Hubby is one of those extremely sensitive people who herx or have a rection to every dose of antibiotic or herb or whatever seems to work on his various bugs.
Is your Bilirubin elevated? If so, that in combo with the nausea would probably indicate Babesia. Hubby's other liver enzymes all normal, but when Bilirubin is elevated nausea present 60 or 70% of time instead of 20 or 30% of time.
Can't decide if hubby really has Bartonella Like Organisms or not -- took 3 months of oral Levaquin -- no herx. Clinically diagnosed with this due to chronic gastritis seen on 3 endoscopies (1st before any antibiotic treatment).
Rifampin really knocked him for a loop -- only managed to take 20 pills. Took a month to restabilize him using the P.K. protocol -- tremors increased from 20% of the time to 80% of the time. However, since then brain has been the clearest it has been since illness started 5 years ago.
If you are not taking supplements -- suggest COQ10 (400mg minimum), Resveratrol (Japanese knotweed source) and pychnogenol plus phosphatidylcholine. These are the best brain antioxidants for Lyme.
If you are willing to experiment, try Andrographis -- start with 1 or 2 capsules daily. The Healing Lyme book suggests taking 3 capsules 4 times per day. Most people have a problem getting beyond 1 or 2 per day. If you can take 12 capsules without herxing, then in my opinion you probably do not have Lyme.
Would be good to add in the Sarsaparilla for detox and possibly the Redroot as well.
Am also curious as to what your tests will show.
Hope you can get some answers.
This is not medical advice, just my opinion.
Bea Seibert
P.S. The frequent waking at night is probably a symptom of adrenal imbalance. Your adrenals are probably run down and you are getting surges of adrenaline at inappropriate times.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
Tim, what a succinct description of everything you have tried & on!
sleep - have you ever had the sleep study done for sleep apnea where you stop breathing while sleeping?
yes, had yourself tested for gluten the 95 items. I just had it done & was amazed to learn I'm allergic to: gluten, case-in, COW'S MILK no. 1, wheat, garlic, etc.
So I'm beginning a whole new life gluten/case-in free! Got a lot to learn & implement, but I'm beginning in baby's steps.
I just had whole body testings done this past month from my new LLMD/holistic MD. They are posted: 4-20-06 new LLMD summary & lab reports updated. All but 1 report I got today are on there now. I typed their medical jargon just the way it was in what they sent me.
dry eyes - has your thyroid been tested lately? Hubby had overactive & dry eyes are really bad; he has Grave's disease...Betty Davis eyes.
hangover feeling when you get up -- some of my sleeping pills caused me to have this. Are you on amytriptiline, sp?
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Tim
Maybe its Babs -- How much mepron did you take? Did it help at all? any herx?
I had babs about the same amount of time as you have been ill before the Night sweats and crazy heart beat- insominia started - symptoms came and went alittle
I was Really Ding Out from the begaining tho-whole time --
I did have exterme joint pain and stiff neck- tired the whole time-- that I feel was mostly caused by the babs --
All of my test came back IND-Igenex- I have both Lyme and Babs -for sure tho -
Try drinking Tonic Water--Quinine-- See if it makes you herx It dose me --
Babs can come back REAL Fast--2 Days -
Babs also causes a somewhat mild skin rash that looks kind of like Prickely Heat-- but the bumps and spaced inches apart some hurt-most dont --itch--
Bactrim DS- worked Very well for me-- Its Cheap also --
Babs is a Very Tuff bug-- Always takes Many months of contenious treatment to be effective-
Hope this helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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LostCityAgent
Unregistered
posted
I am sorry to hear of your symptoms, disabilitym and distress. Have you had an MRI of the brain? If so, what were the impressions? Do you mind sharing your age, gender, and locale? This all play an important to some degree depending on what it is that you actually have. What was your initial dx, prior to LD, CO INFs?
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
wow-except for the fatigue i have a lot of the same symptoms as you...and i thought i was better... ha ha. well, i blame a lot on 2 head injuries -knowing in reality it may just be lyme after all.
any way---ginko helped with the brain fog for years...recently i added sam-e and acetyl-L-carnitine---like dr b says in his guidelines---and it seemed to make a big difference in the symptoms.
i just returned form a trip from maine to south florida and and back. the last two days from virginia up were a night mare---i thought i was going to totally crack up. my son talked me thru northern jersy and he will probably never be the same. i will never drive on roads like that again...thank god the powers that be agree i am disabled...
what about the brain scan they do at columbia...not an mri...i forget the real name for it...i have some things under control...but some are getting worse. but that brain scan is better than an mri---shows the problem---then shows when it is better---has to be done by the right people tho or won't be read right
for me...theres too much new info to keep up with. i've lowered my goal to being independent...as in...not in a nursing home...so i guess i'm going down hill too...just trying to enjoy the ride as long as i can
a brain spect scan it is called...others on here know about it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Betty - Yeah, thyroid okay via testing, never had it scanned. Hangover was with me from the start, before sleep meds.
Jay - That's what gets me, most people seem to report some kind of pain with these co-infections and I just get mild/moderates headaches.
I did four months of Mepron/Zmax while I was on Rocephin, nothing, good or bad. Before that, three months Doxy/Rifampin for Bart, nothing too.
Jmcc - 2 MRI's, last 7/03, normal. Male, early 30's, single, now living with parents .
Live in beach suburb of LA but used to bike in Malibu Mountains where ticks are for sure.
lpkayak - Think you are referring to Spect scan. 1st one done in '01 I was perfused and hypoperfused all over the place.
Recent one mild to moderate in anterior 2/3 of left temporal lobe. Mild in Broca's area.
1st one, Radiologist didn't know what he was looking at but Dr. H in CA said it was Lyme brain.
What I don't understand is despite it being much clearer I feel much much worse.
Before my symptoms became disabling I had periods of daily headaches starting in the morning, dry patchy throat, not really sore.
Also periods of air hunger and bronchitis. In '96 I had bad flu for four days and a few days after symptoms subsided I had this post viral thing that lasted about a week.
Symptoms were somewhat similar to now, only much less intense. Felt less energy over next two years, then it hit.
I dunno. Maybe it's post Lyme permanent damage but if I accept that I'm screwed. Thanks,
Tim
Posts: 52 | From California | Registered: Aug 2005
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LostCityAgent
Unregistered
posted
Semi, I am sorry to hear of your early retirement (if it was health induced) otherwise, congrats. Well, be glad about the MRI as your symptoms naturally cause a scare of a lateral sclerosis. But, your with your age that would be rare. I am happy at least for this. Enjoy LA, I loved it when I was a flight attendant at age 20.
posted
I have had extensive testing. Besides the positive Igenex test, I tested high for mycoplasma and epstein barr virus. Epstein Barr is famous for reactivating in many of us and can really wipe you out on its own. Perhaps your doc can test for these as well.
I am treating all of these...
-------------------- Nori Posts: 109 | From Virginia | Registered: Mar 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
hmmmm...it is interesting that spect got better and symptoms got worse---check out the sam-e and carn by doc b...it really did help...and good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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