Topic: Igenex Test Results, Shocking Appt With LLMD
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Alright folks, here they finally are, after 6 years of treatment with Dr. D in Mass and being told to not get tested, I finally did it myself. So this is after multiple rounds of antibiotics, both IV and oral. I also was on antibiotics when I took this test.
B. Microti Antibody G/M IGM was <1:20 Titer & IGG was <1:40 Titer
HME Panel: IGM was <1:20 Titer & IGG was <1:40 Titer
HGE Panel IGM was <1:20 Titer & IGG was <1:40 Titer
B. Henselae Antibody G/M was <1:20 Titer & IGG was <1:40 Titer
Babesia Fish RNA - Negative.
Here is what I've done for treatment.
8 months Tetracycline X 6 1,500mg per day -- 48 months total
8 months of Biaxen & Plaquenil X 3 1000mg Biaxen and 400mg Plaquenil per day -- 24 months total
4 weeks Oral Penicillin 2 grams per day
4 weeks IV Vancomycin, 1.250 mg per day, via PICC line
2 months Azithromycin and Amantadine 500mg Azi, and 200mg of Aman
2 weeks of Levaquin 500mg per day
2 weeks Bactrim 800/150mg per day
So I've been treating a little more than 6 years, about 6 years and 5 months
I improved drastically after IV Vancomycin, which was followed -- accidentally because of Line Sepesis-- by Bactrim and Levaquin.
Tetracycline helps, but Biaxen, Plaquenil, Amantadine, Azithromycin did nothing at all.
Now here are my symptoms, because I still suspect a co-infection which has not been diagnosed.
1987 - Unexplained flu symptoms: fevers, sweats, chills * 1987 - Swollen glands * 1987 - Difficulty with concentration or reading 1987 - Forgetfulness, poor short term memory 1987 - Joint pain or swelling * 1987 - Muscle pain or cramps 1987 - Memory impairment or loss "brain fog " 1987 - Dyslexia and word-finding problems 1987 - Attention deficit/hyperactivity disorder 1987 - Anxiety 1988 - Nightmares * 1988 - Sore throat * 1988 - Fatigue, tiredness, debilitating 1988 - Confusion, difficulty in thinking 1988 - Visual/spatial processing impairment trouble finding things, getting lost, bumping into things 1988 - Slowed processing of information 1989 - Sleep Disorders, insomnia, waking up constantly. 1990 - Violent behavior, irritability 1990 - Rage attacks/impulse dyscontrol * 1990 - Lightheadedness, wooziness, difficulty walking 1990 - Tremor 1991 - Depression 1991 - Antisocial behavior 1992 - Exaggerated symptoms & hangover from alcohol 1992 - Twitching of the face or other muscles 1992 - Headaches * 1992 - Blackouts/Fainting * 1992 - Tingling, numbness, burning, stabbing sensations 1992 - Heart murmur, pulse skips, * 1992 - Stiffness and cracking of the joints, neck, or back 1992 - Eyes: double, loss, blurry, pain, increased floaters 1992 - Ears/hearing: buzzing, ringing, ear pain 1992 - Dizziness, poor balance. 1992 - Sexual dysfunction or loss of libido * 1993 - Unexplained weight change 1993 - Shortness of breath, cough, * 1993 - Change in bowel function constipation, diarrhe * 1994 - Obsessive compulsive disorder OCD 1995 - Abdominal Pain, Acid Reflux, Nausea 1995 - Rapid mood swings that mimicked bipolarity 1996 - Disorientation: Getting lost, going to wrong places 1996 - Excessively itchy skin * 1996 - Hands and/or bottom of feet ache 1996 - Blood sugar changes * 1996 - Photophobia 1996 - Phonophobia 1996 - Upset acidic stomach and nausea 1996 - Chest pain or rib soreness 1997 - Unexplained hair loss 1998 - Cold hands/feet, Clammy 1998 - Night sweats 1999 - Transient muscle pain which jumps around the body 1999 - Extreme weight loss 80lbs in 4 months * 2000 - Sleep Paralysis * 2000 - Testicular pain * 2000 - Crohn's Disease 2000 - Irritable bladder or bladder dysfunction * 2000 - Panic attacks * 2000 - Facial paralysis, drooping eye lids Bell's palsy *
The symptoms then continued as is, with the ones with stars next to them indicating that they happen intermittently, while the rest are ongoing symptoms constantly.
Can anyone tell me what they think? Do I have a co-infections here possibly? I'm waiting for Fry Labs to send me my results on my blood smear.
[ 14. July 2008, 09:21 AM: Message edited by: METALLlC BLUE ]
-------------------- 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.
posted
It doesn't look like you've been treated for babesia. My babs test came out negative, too. I was diagnosed based on night sweats, air hunger and heart symptoms. You have all three, so I'd say your missing babs treatment (in my non-medical opinion).
Six years is a long time to not be feeling better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
I agree a co-infection is missing. Bartonella or Babesia. Your Babesia tests are all negative, but many people seem to respond well to treatment who have negative tests.
You might want to try a treatment that targets both, see what happens-- Rifampin+Zithromax+Malarone ?
Feel better!
(What do the * mean after some symtoms?)
Posts: 371 | From CT | Registered: Jun 2008
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Now remember I wrote:
I improved drastically at one point. I was put on IV Vancomycin and Oral Penicilin, which was followed -- accidentally because of Line Sepesis-- by Bactrim and Levaquin in a very short period of time. There was no way to tell which drug helped.
I saw accidentally because my LLMD said Levaquin or Bactrim are not helpful and he never prescribed them prior to, during or after the Line Sepsis. The hospital ER doctor prescribed them for the sepsis.
Something happened after Oral Pen/IV Vanco, Bactrim and Levaquin. One or, a combination, of those 4 drugs significantly impacted the nature of my illness.
So Feb of 2005, I'm on IV Vanco, and Oral Pen. I go 4 weeks on that, develop line sepsis and an allergy to either the Vanco or Pen (Probably Pen). They hospitalize me and give me 2 weeks of Levaquin and Bactrim to kill the sepsis.
So all of Feb and March I was extremely ill.
Come April of 2005, suddenly I was about 50% functional. That's 2 months. I improved substantially.
Tetracycline helps, but Biaxen, Plaquenil, Amantadine, Azithromycin did nothing at all.
Also, the little stars mean the symptoms come and go intermittently over the years, they aren't constant or consistent.
-------------------- 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.
posted
Based on the Levaquin/Bactrim, it could be either. You do have babs symptoms. Maybe try it and see what happens.
Or you can treat both at the same time. I took Levaquin, Malarone, Lariam, Art, Mino, and Tindamax to treat both at the same time. Lariam was 1 every five days, Tindamax was one week during my herx cycle.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Are you still seeing Dr. H? My family is pushing for me to see him. I'm not sure how I feel about doing it.
-------------------- 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.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I have had testing done for viral infections, and the other things listed. So far I was negative. That doesn't mean much, but I seem to respond well to antibiotics when the right antibiotic is used, I'm just not sure which one that is.
I read your posts after reading the package Betty sends out.
As far as Dr. H -- I've met him on a number of occasions. Great guy, but a very strong personality like myself. It was uncomfortable. I want the best care possible though, so I'm still thinking it over.
In Norwalk T? E-mail me about your experience?
-------------------- 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.
I would also suspect coinfections, particularly Babs and Bart.
The sore hands and feet thing is classic bart. Do you have any funky skin stuff going on? Like the stretch marks, or very fine, thin spider veins?
The night sweats and cardiac stuff could be babs. The psych-like symptoms coud be bart babs or lyme.
My son has also tested negative for babs, yet his behavioral stuff has improved since starting mepron, I'm hoping against hope that we have found the last piece and that the end for this is in sight, for him.
I test positive for bart h and bart q, do not have the stretch marks, (ok, I think that there is one little tiny 1/4 inch long one starting on my leg) but I have lots of these funky little very thin spider veins that I have never had before.
Looking at mycoplasma is also a good idea.
It's very possible that your treatment is pushing down the lyme, and letting the untreated coinfections go wild.
There is so much cross-over of symptoms, that it's hard to to tell what is what.
For example, I had lots of lyme-like symptoms, but upon starting treatment for bart, my symptoms by and large cleared up quickly (except the spidy veins). I test negative for lyme, and I have to wonder, was all the lyme-like stuff just the bart and myco that I have going on?
I hope that helps, I know that it is tough to contemplate changing docs, but if the one that you are seeing isn't considering anything but lyme, then he isn't meeting your needs.
As many others have said here, not everything is lyme.
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
| IP: Logged |
Your screen name is a bit ironic. Have you been tested for heavy metals?
Toxicity will also cause you to remain sick constantly. And I've been told that in some cases may even make you sicker when you add in the right combination of chemicals i.e antibiotics.
I don't have the evidence to back this up but it does make some sense... Just something that I heard from a colleague. sp
Just a thought
Kind Regards,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
LymeM, and Julia, thanks for the additional information. I was tested for heavy metals and they were "ok" -- but I wasn't tested through a specialty lab, therefore as usual, a negative or "ok" result doesn't mean much.
As far as co-infections, I'm really concerned about Bartonella. Both babesia and bartonella are on my mind as I move forward.
I've had 4 Western Blots done, and two rounds of co-infection testing, as well as viral testing done through Quest, Labcorp, Lifelabs, and now Igenex.
Testing has been of little value so far, and I've had a massive amount of testing done in other areas. I've had this infection for 21 years, so I've seen a few doctors (Over 150...isn't that sad?). In my other Western Blots, I've had kDa 41 and 45 show up a number of times, and now the Igenex confirmed those further.
I don't think there is any doubt what so ever that I have Lyme Disease. 6 Brain SPECT scans, 5 of which demostrated widespread hypoperfusion, Neuropsychiatric testing that demonstrated memory impairment, spatial, recall -- a whole array of "minor, or below average" results.
I've had a lot of bowel biopsies, endoscope procedures, and most have found inflammatory disease, esophageal reflux, gastritis, and so forth. Blood work has found mild anemia.
There is much more, but the pattern, history, exposure (I live in MA, played in the woods a lot, visited CT and RI camping along the coast), as well as testing, and circumstantial evidence all point to borrelia b.
-------------------- 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.
quote:Originally posted by METALLlC BLUE: Are you still seeing Dr. H? My family is pushing for me to see him. I'm not sure how I feel about doing it.
Please see someone that knowledgeable!!! Maybe Dr R, then??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm working on it. I'm still with Dr. D and I see him tomorrow, but I'm considering Dr. H in Newton, Dr. H in NY, or Dr. P in CT. Finances are an issue, but I'm thinking of going forward in spite of that and just letting the cards fall where they may.
-------------------- 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.
I wasn't questioning the lyme diagnosis, I was just suggesting that some of what you have going on is coinfections, as many of the symptoms over lap, and some are specific to certain coinfections.
Everything that I have read suggests that if there are coinfections, they must be addressed to finally get to the lyme.
I was also tested repeatedly through labcorp for coinfections, came up negative each time, finally I went to my son's doc and she tested me through one of the specialty labs, and sure enough, pos. for bart h, bart q, and myco phenmonia. (but still neg for lyme).
My son has always come up negative for coinfections, but responds to zith, and mepron, both of which are used for kids for bart and babs respectively.
His coinfection diagnosises are clinical, his lyme is confirmed/cdc positive.
If I remember correctly, your doc isn't too keen on the concept of coinfections, and if you have them, you need to treat them to get better.
I know changing docs is tough, but if you want to get better, you may have to.
posted
Jeez Metallic Blue I'm sorry you have this disease(diseases) I'm sorry for everyone who has it. If we could get reliable testing they may come up with reliable treatment. Anyway, on your list of treatments I didn't see a cyst buster--flagyl or heparin listed. Have you tried those. I have as well as some oral antibiotics doxy, zith(horrible), biaxin, tindamax(horrible) plaquenil, malarone, flagyl, tetracycline, etc. and am now waiting for rocephin to be delivered to start IV. Getting a PICC line next week. Still on heparin. Last month marked one year of treatment and I'm still exhausted daily and have symptoms come and go..... More so now than when I started treatment. Just sucks!!
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Kp, I knew what you meant originally. Thanks for taking the time to give me this really important information.
-------------------- 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.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Also, I started Bactrim today. I'm doing a 2 week cycle to determine it's value. Given my response to antibiotics in the past, I expect 2 weeks to be plenty of time to determine how I respond.
I used Bactrim and Levaquin back in 2005, and feel they "might" have played a role in the significant improvement that came after the 2 week cycle discontinued (I was on them because of sepsis, not for Lyme)
So I'm going back to see if either drug was the reason for my progress. Either one alone, or together in combination created the result I saw.
It's also possible as I may have said, that the 4 1/2 weeks of IV Vancomycin and Oral Pen may have caused such drastic improvements. These 4 drugs were given within a 2 month period of each other, so it's hard to determine.
So, I'm using the same exact dose as before, but using the drug alone. No other antibiotics. I'll report back.
-------------------- 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.
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Not sure why he would just leave you off meds when you clearly backslided not being on anything. And a quick backslide off abx typically points to a coinfection.
I thought Rifampin was a good conclusion by both of you, after reading your story and lingering symptoms. Of course it would need to be taken with another antibiotic. (Perhaps a cyst buster?)
The crohn's could possibly be bartonella in hiding. (I lost 50 lbs while trying to figure out what I had). Another clue is that you responded to Levaquin.
Just my thoughts...
Sorry for all you've been through.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
Have you had your HLA DR test done as per Dr. S? Would be interesting to see if you have the type that needs questran to clear lyme toxins, or maybe you are being exposed to mold?? Might be worth talking to him about it.
[ 19. July 2008, 12:50 AM: Message edited by: Lou B ]
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Your symptoms sound like Bart to me. I responded to bactrim and leva.
I will be suprised if your fry slide doesnt come back positive for Bart.
Kudos to you for not letting your LLMD walk all over you and put you on treatment you know doesnt work for you!
I hope you continue to improve on Bactrim.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
I have Bart and Lyme and maybe Babesia. I responded greatly to Bactrim DS. My vote is that Bactrim was the kicker for you.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm continuing with the Bactrim, but unfortunately I don't have an eternal supply.
I'm hopeful the slide comes back and gives me some answers. Oddly though, I'm not in a rush to receive the results, which my doctor likely already has. I suppose that since I'm already treating myself with Bactrim, that I'm on the right path. I also have Levaquin.
I don't have enough to do a full protocol though. Maybe I can convince a doctor to prescribe it, if I record the outcome.
We'll see how it goes. I'm on my forth day of Bactrim. I seem to be pretty stable and strong right now. I don't think it's from the Bactrim. It's too soon for me, but after 2 weeks, I'll know.
-------------------- 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.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
![[confused]](graemlins/confused.gif)
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic