posted
Wondering what y'all think about my test results as to relationship with Lyme. Have seen 3 LLMDs. Diagnosed w/Lyme and Babesia Duncani, toxic mold, and other things......the same litany of symptoms we all share, except bedridden 6 yrs.
Two yrs ago had 5 Igenex tests: Lyme & Babesia Duncani (both positive).
Also IGM positive for EBV w/high past titers. EBV IGM apparently not going into standard dormant cycle/tested every 6 mos.
IGM positive/Parvovirus B19.
Past high titers of HHV6 and CMV.
LabCorp CD57 panel/below 40. Quest CD57/2
IL-8/4,000+
C4A/9800+
I was one band away from being CDC positive, but then there is the negative urine confirmation tests. So confused. LLMD says "oh the urine test, FISH, & PCR tests not conclusive" ....hmmmm, well why do them???? Approx. tripled cost of testing.
Wondering whether in your opinion the lyme urine confirmation and others being negative rules out lyme conclusively? I know it interferes with some band(s).
All my symptoms (many) are consistent with Lyme but also w/EBV & other things. They are all very similar.....not sure one can really distinguish??
My strange constellation of symptoms (extreme fatigue/bedridden 6 yrs, pain/especially neck/trapezius area, severe brainfog), orthostatic intolerance, bladder, eye twitches constantly, sore soles of feet, eye infections that eye doc says is common in lyme patients, etc.
Did brief lyme treatment trial, herxed and then had some improvements. Oral ABX though really wrecked gut, and resulted in out of control candida which I suspect in part was somewhat pre-exisiting to some extent.
But, I also had extremely infected root canals (removed) so the ABX could have been addressing those infections which the oral surgeon said was extensive...likely 10 yrs of infection.
Sorry for all the issues. Been sick a very long time....all these things relate to cause of being bedridden I think.
Thanks for your gut instinct thoughts/suggestions.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I am confused on what you are asking... you think maybe you don't have Lyme?
What do you think it is that is making you sick & bedridden?
It sure sounds like lyme, bartinella, babs, + other things...
The fact that you have been treating so long and not getting better... I would take a look at what you have done - if there was something in your history that made you better, go back to that...
If not, look at another angle -- or an underlying cause like HPU. 60% who have HPU have leukodynia. Look at your fingernails... do you have white spots/lines? This makes diagnoses easy and testing unnecessary.
Were the root canals filled with amalgams? I have had several jaw infections (hospitalized) since my root canals. No one ever suggested that mercury is poison and may contribute to my illness.
I am just now removing the amalgams. Consider mercury as a possible contributing factor to your illness.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Momlyme, not sure what to think actually. I am so confused about what this means with the negative lyme urine confirmation result. LLMD said urine test not reliable, but if so, then why do it?
Thank you for reminding me about KPU. Such brainfog I keep forgetting.
I don't have white spots but do have significant line/ridges. So much that I use a nail sanding block to smooth them out.
Can you (or anyone) help me to better understand how the lines/ridges relate...what it signifies related to KPU? Is there an online source site link that says no need to KPU test if you have nail lines/ridges??
Yes my root canals had amalgams. Had them extracted last year. Subsequently had 2 remaining amalgams removed, so now amalgam free. All work was performed by a very saavy biological oral surgeon who implanted some homeopathic things in the extraction areas ...can't remember now what those were called but he said important to do with anyone chronically ill. Ins. of course wouldn't pay for the homeopathics (like all else with this illness).
He said it was obvious that the root canals became infected immediately after they were done, a decade ago, about the time I started getting worst of symptoms. How he knew that not sure. He said they had become toxic gaseous which is a really bad sign of infection for a very long time.
Said it had been dumping toxins into my body for a decade.
Between the infected root canals, toxic house mold, and possibly XMRV, chronically ACTIVE EBV....it is really tough to sort out.
There is a lot going on infection wise within me, as there is for all of us. All of it needs to be treated, so I am just trying to sort out well is lyme in or out. Igenex tests were positive, but then negative urine confirmation confuses me. I know active EBV can give false positives on lyme tests.
Just want to be sure I am treating the right things.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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posted
The PCR tests are conclusive ONLY IF THEY COME BACK POSITIVE. You can't argue with a positive PCR. If it is negative it doesn't mean you don't have Lyme. The urine test is quite often negative even when you have Lyme.
If you have a positive Lyme Western Blot and you've been bedridden for 6 yrs, it might make good sense to TREAT.
You also have a very low CD57.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My ID doc doesn't think positive PCR tests mean much. Can't win. I don't have a positive PCR, but...
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
HPU is basically a major zinc deficiency due to heavy metals taking over where zinc should be.
You become zinc-less.
Without zinc, several of the 8 enzymes needed for the synthesis of heme malfunction. Heme is needed for liver detox reactions.
One of the most common physical attributes to the related condition is 'leukodynia' - or white spots on the nails resulting from Zinc losses.
Heavy metals will hold on to lyme, parasites and babesia... they are intertwined.
With your history, I would say this is definitely an issue you will have to face.
Has your LLMD ever mentioned heavy metals? Have you ever thought the mercury needs to be gotten out?
My LLMD had never heard of HPU. She had me email her Dr. K's protocol, the power point presentation and the video presentation. We just got finished testing... although I started treating before the testing was done because I knew this was the issue.
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Jam, I wanted to share with you that I was bedridden for over 3 years and have now improved considerably through the use of colloidal silver. I could not sit up because it affected my heart and I couldn't even get up and go to the bathroom. I believe I came close to dying that first year I was bedridden from my heart. I really believe CS saved my life.
I was in such bad shape that my spouse had to build a ramp beside the bed to roll my reclining wheelchair on and I could barely roll from the chair to the bed, in the beginning. I'm going to an LLMD, but I don't have a definite confirmation about Lyme. We're getting ready to try antibiotics along with other meds after trying to build my body up with supplements and working on detoxification for many months.
I'm now in a wheelchair (and bed too), but I can take baths (didn't have a real bath for almost 3 yrs), cook some, wash clothes and clean some . I can get out and go in stores, restaurants, take rides, go to an occasional movie. I actually have a life now, even more than I did before I was bedridden and could barely walk to go anywhere. My marriage is in shambles, but I thank God I started improving around the time everything fell apart, otherwise it would have been too much to handle.
I make my own CS. I've been on about 4 oz a day for 1 1/2 yrs and was on low doses ( 1-2Tbsp for 2 yrs before that). It has been a miracle for me, so I wanted to tell you in hopes it would help you and just to encourage you that you can improve even when you're supersick and things look really dark.
I even made a trip to the ocean a few months back. I cried when I saw it because there were times when I was bedridden I wondered if I would ever be able to get out of bed again. Hang in there.
Posts: 2 | From Eastern USA | Registered: Apr 2010
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posted
Thanks everyone for your thoughts on my situation. You have no idea how much it means. I am truly in desparation here. Yesterday was really bad where I felt so depressed with really bad thoughts for half the day. I think that was a post reaction to the emotional stress of having picc line removed the day before when treatment is not finished.
Long story there, short version is displaced from my house 2 yrs/toxic mold remediation, and husband's emotional illness has been made worse from the stress. He is primary caregiver and has to oversee the house repair. Its a mess. My life has never been in such distress as it is right now. Family 3000 miles away for 40 yrs so I am isolated and on my own trying to sort out my treatment options.
Posts: 495 | From SF Bay area, CA | Registered: Dec 2007
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