I have recently received my test results from IGeneX etc and have done all the reading from the newbie links. However I still have a few "newbie" type questions:
My results:
IGM 31: ++ 34: + 39: IND 41: ++ 83-93: +
IGG 39: IND 41: ++ 45: +
I am IGM IGeneX positive, IGG negative. As I do not live in the US to need to worry what the CDC think! I know most of you dont anyway! All my co-infection test results were negative, not that I really understood the test results. I did however have IGg +ve for CMV and still IGm and IGg +ve for H.Pylori.
My LLMD will start me on Biaxin 500mg and Amoxy 1g twice a day this week, he said this should work on both the H.Pylori and Lyme.
My Questions
1. I showed some clinical signs of Babesia. However my highly respected LLMD, based on the test results, said he was quite convinced I did not have co-infections. Are co-infections more common than tests reveal?
He said "approx only 20% of people actually have co-infections" after I asked him the same ?
2. I was told that the CMV result was probably from an infection some time ago and most likely not significant. Any thoughts?
3. Do my IGeneX results mean I have a current infection or Chronic or both? This seems to be a pretty Gray area. I have been symptomatic for 6 months only now!
4. Any comments on my treatment? I am in my 6th week of doxy and have seen some small progress. Last time I took 7 days of the Biaxin/Amoxy treatment, which at the time we thought was only treating the H.Pylori, I herxed like crazy so I guess this is a good sign.
Living in China means the Internet support groups are my lifeline at the moment, so I would appreciate any help to my questions.
If anyone can help interpret my Co-infection results that would also be useful, maybe PM me.
Again thanks for all the help - without this site I would still be running around China-Australia, probably taking steroids for possible MS, taking anti pschotic drugs for my psychosomatic tendencies and in big trouble healthwise.
This has been a life saver for me! Needless to say its been a very uplifting couple of days, finally knowing WHY my body is going crazy!
Steve
Posts: 34 | From China | Registered: Aug 2006
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I disagree that only 20% of lyme patients have co-infections. Someone posted not long ago that it's more like 60-80%.
After you've been treated awhile, the coinfections will surface if they are there.
WElcome to our world!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Cobweb
Unregistered
posted
My LLMD says that 80% of her patients have co-infections-quite a difference of opinion. She also thinks lab tests are unreliable for testing.If the clinical symptoms are there she treats for it regardless of test results.
My only knowledge of CMV is that it is dangerous for an unborn fetus. So don't get pregnant!
I don't recall exactly how, but my Igenex tests results confirmed long term lyme-so there is some indication but I don't remember what.
Best of luck, Welcome Aboard, Carol B
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Steve,
I also don't buy the 20% theory your llmd has about co-infections.
Your positive IGM means you have a current infection. Igg means you have been exposed to it some time in your life... I have had both IGG and IGM positives...or one or the other...the tests are not all that reliable...
Co-infection tests are also unreliable...however it is significant that you are positive for h-pylori which is said to be cross referenced with lyme...
I also...I have also shown a positive for CMV...and Hge...and some herpes 1 thru a big number I don't remember...this disease seems to posess some viral tendancies which could be cross referrences for co-infections....
Hope this clears some things up for you....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Zman - is there any extra precautions to take due to the Viral +ves?
Dr. I.... Shakram & Salam Malikum.
I have researched quite a lot also. From what you say in your other post I do think with my treatment plan above that I am only missing the cyst buster, but I feel it will be better to add it later, than directly going full steam right at the beginning. I think 2000mg of Amoxy and 1000mg clarithimycin will be a good start.
Last time I took this for the HPylori I herxed like crazy, so i doubt I would tolerate higher doses, let alone another abx.
I have now also had 6 weeks of doxy, the last 4 being at 400mg a day. I do feel there has been some steady improvements (proven by a mysterious rash I had developed dissapearing and less headaches). I have had no major herxes, however i think i will herx when I change back this week to the above protocol.
I also dont understand why the LLMDs dont always treat with IV's - maybe someone can answer this?
Is it because they know there is too often relapse, it is too costly or they use IV only in the most serious of cases?
I am still able to work, walk, talk, breathe etc relatively normally, although I feel my symptoms are significant and quite bad and have greatly affected my lifestyle, my LLMD thinks my Immune system is doing a pretty good job, just now needs some extra help.
Any other comments on my treatment plan would be useful.
Thanks in advance Steve...today from Urumqi, West China!
Posts: 34 | From China | Registered: Aug 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
The reason for the anti-virals I have initiated is due to some folks with Parkinson like symptoms being treated with amantadine...and gaining some success.
I believe you shold not hesitate to ad a cyst buster at this time...the abx you are utilizing will chase the bacteria into a cystic form and flagyl(metronidazol tinidazol) is a very necessary added medication.
This disease seems to have fungal/bacterial/viral inclusive properties.
Some even believe that the bacillus actually acts like a retrovirus in that it takes on part of our own dna thus helping to evade our own immune systems.
The constant switching or pulsing techniques are borrowed from aids patient therapy...thus giving the pathogens time to create offspring that are once again nonresistant to abx therapies of one kind or another.
There could also be a genetic reason some of us get well and some become chronic.
Some folks with HIV never get full blown aids but become carriers due to a particular gene they posess.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
1. I also dont understand why the LLMDs dont always treat with IV's - maybe someone can answer this? Is it because they know there is too often relapse, it is too costly or they use IV only in the most serious of cases?
Some possible reasons: a. insurance co's squawk because of expense, and then they go to med boards. b. possible medical complications, that is, it is more invasive. c. difficulty in doing "combo's"
2. Viruses: I had high levels of EBV and some others. My llmd, who is conservative, felt it came with the territory of suppressed immune system, and that treating the lyme would allow immune system to regain its strength.
Then, a ND I saw last year (new one now), tested kinesiologically for coxsackie, & put me on herbal antivirals. It got expensive, so I just do garlic now. They told me it can affect heart. .
3. Cystbusters: I did not start flagyl until after 3 months solid of mino/zith combo. When I did take the flagyl, it was pulsed 5 days a month, overlapping the mino/zith. The schedule was "lessened" every 3 months, that is , the pulses were further apart during a month. I now take tindamax instead.
4. Co-infections: tested negative for bart/babs, pos. for hme + hge. There is overlap of symptoms so it is hard to distinguish. Did not receive tx for bart until this year when symptoms became distinctive. Treated now based on symptoms.
There was discussion on whether immune system is strong enough to handle it. If there are symptoms, then that is not the case. But that occurred way down the time line of abx tx. That is , lyme was less of a player. Plus, bart symptoms were a. small but distinctive herxes (shin bone pain) with KMT bart frequencies, b. skin changes, c. infrequenct arch of foot pain.
Still no tx for babs, but I am gathering "data" to present for consideration. I'd rather my immune take care of it. At this point, my data is low ferritin, and daily "heat flares", infrequent night sweats.
There is improvement now that I am back on a pulse abx, and supplementing iron, but the reason/cause for this "improvement is not clear to me, i.e. suppression via abx or improvement in immune.
I do llllooootttttsssss of supplementation to help body strong/repair damage, and use a chiro/nd for once a month bodywork.
Northstar
[ 01. October 2006, 12:13 PM: Message edited by: northstar ]
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