posted
Back in March I posted here my Igenex results. here they are again
IGG Negitive on all bands except 41IND
IGM- Positive Bands23-25 ++ 34 IND 39+ 41+ 66+ 93+
Am seeing a lldr and have been on Doxy for 7 weeks. At first I thought I had seen some improvement but now not so sure. I have ALS type symptoms and did have one abnormal EMG test that was not enough to give a dignosis. My Calves are very weak and I have faciculations or twitches there and elsewhere also at times. Standing in one place for any period of time is difficult as is walking any length. A lot of you blame Lyme for everything but I have an open mind . I have read about ALS/LYME connections. My DR wants to keep going with the Doxy and I am. Even he says he cannot be sure so lets treat it. Fatique is also present. He is doing a co infections test as well as another lyme ( Not Igenex ) He says they ( tests ) are not all that good.Man where do I go from here...Thoughts please...Thanks
Posts: 355 | From NY | Registered: Jan 2006
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posted
Forgot to add that I have RA Rhematoid Arthritis as well Positive RA factor which may? interfere with testing but have had ddifferent opinions on that. Dr Harris from Igenex did not think so
Posts: 355 | From NY | Registered: Jan 2006
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suki444
Unregistered
posted
Hi
It doesn't sound like your doc is that knowledgeable...but perhaps he is the only one near you. If not maybe you could switch to someone more experienced?
A good LLMD will treat you for co-infections based on symptoms...usually those with the most severe presentations of Lyme are co-infected. So for symptoms to resolve then you need to explore co-infections even if tests are negative.
Are you taking all the supplements dr B advises in his guidelines? Mag Tabs can help the muscle twitching. Methyl B12 and coQ10 are good for energy and strength.
Are you taking a high enough dose of Doxy? i.e. above 200mg - it depends on bodyweight. If you plateau on this you need to switch treatment.
IMO Lyme can present as any neurological illness, I was almost diagnosed with MS before getting to a LLMD.
posted
Are you saying it's probably a co infection? I'm taking 300 mg Doxy. Dr is very lyme Lit.
Posts: 355 | From NY | Registered: Jan 2006
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posted
With those results on your WB, it sure looks like Lyme to me! (I'm NOT a doctor) -- but esp. bands 23-25 are very Bb specific, and my NP says that indicates a long running infection.
Doxy is a hard drug. I couldn't handle the herx, so had to switch off it... but may try it again at some point. I DID improve after taking it.
7 weeks is very, very early in treatment. Even if there is something else going on, you still need to treat the Lyme. Could well be a co-infection, too -- but the Lyme is pretty much a sure bet with those results. I'd say keep at the abx -- either Doxy, or switch to something else -- but treating the Lyme will help you a great deal.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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bettyg
Unregistered
posted
This is a copy of 1 of 15-20 special body lab testings done on me by my new LLMD/holistic MD.
Note: motor neurons and rheumatoid arthritis mentioned in several areas over & over. Note where the deficiency was causing these to show up. Perhaps a test like this would show up some things like this to be treated in addition to your lyme disease.
GENOVA DX / GREAT SMOKY LABS, Asheville, NC
NO caffeine clearance since my NO DOZ pill didn't show up! Plasma CYSTEINE 4.42 HIGH; hi to 3.9 Plasma sulfate 4.70 low, lo 4.80 Acetaminophen glucuronide % recovery is 7 LOW, low is 27 Plasma cysteine/sulface ref. Range is HIGH 0.94, hi is 0.78
Free radical markers: Catechol close to HIGH 0.035; hi is 0.040 GLUTATHIONE PEROXIDASE LOW 11.9, lo is 20.3 Superoxide dismutase LOW 1,400; lo is 1,610
Caffeine level is greater in 2nd saliva sample. This may be to additional caffeine intake or MISLABELING of tubes. Caffeine clearance could NOT be reported.
To the patient from lab:
Our bodies must be able to detoxify, or neutralize, toxins from the external environment as well as those produced within our own bodies. This process takes place mostly in the LIVER, and consists of 2 phases.
PHASE 1 toxins are activated, which means that they are altered in such a way that carrier molecules, phase 2, are able to transport them out of the body.
A handy analogy is the bagging of our trash, phase 1, so that the garbage man can pick it up and cart it away, phase 2.
PHASE 1 is accomplished by a family of enzymes called ``cytochrome P450'', and phase 2 takes place via a number of important mechanisms, 4 of which we measure in this test, with the help of the challenge substances, caffeine, acetaminophen and aspirin.
Both phase 1 and 2 of detoxification must function adequately so that toxins are able to be neutralized, and the 2 phases must be in balance with each other so that the activated compounds from phase 1 cannot accumulate in the body and cause damage.
In your particular case, some phase 2 pathways ARE UNDERFUNCTIONING. This can significantly impair the body's ability to clear compounds. There is also some evidence of LOW ANTI-OXIDANT RESERVE. Anti-oxidants help to counter excess free radical activity in the body, oxidative stress, which in your case is present to some degree.
Free radicals are highly reactive molecules capable of causing tissue damage in a chain-reaction fashion in the body.
With nutritional support, these kinds of imbalances are usually correctable. Following is a detailed description of your results.
TO THE CLINICIAN:
Plasma cysteine is elevated, while plasma sulfate is depressed. This suggest that the body is having some difficulty generating sulfate from cysteine, sulfoxidation..
This has results in an elevated cysteine/sulfate radio. This impairment may be due to a genetic enzyme defect or molybdenum insufficiency, and has been observed in some patients with:
Rheumatoid arthritis and neurological diseases; such as, Alzheimer's Parkinson's disease, and motor neuron disease.
Ensure availability of cofactors for cysteine's metabolic pathways, including molybdenum, magnesium, vitamin B6, and pantothenic acid.
Insufficiencies may result in the accumulation of cysteine.
NOTE: Phase 1 & 2 ratios which lie below the reference range will NOT be discussed within the commentary text, even though they may appear in the red boxes labled ``abnormal''. At this time we have NOT found sufficient information to consider them clinically significant.
Among the phase 2 pathways, GLUCURONIDATION IS UNDERFUNCTIONING.
This can result in poor detoxification of many compounds in the body, particularly many medications.
This may reflect nutrtional inadequacies and/or genetic uniqueness.
Elevations of either catechol or 2,3 DHBA indicated HYDROXYL RADICAL ACTIVITY IN THE BODY. This may reflect excess free radical production, inadequate antioxidants, insufficient nutrient cofactors for SOD, SUPEROXIDE DISMUTASE, and/or excess iron or copper in the body.
Free radical damage is thought to underlie many pathological processes; such as:
The level of SOD, SUPEROXIDE DISMUTASE was found DEPRESSED.
The body utilitizes this enzyme to rapidly convert the superoxide anion radical to hydrogen peroxide, which is less toxic to cells.
Mitochondrial SOD requires MANGANESE for its activity, while the cytoplasmic form REQUIRES COPPER & ZINC.
Reduced levels of SOD have been noted in several disorders;
Including rheumatoid arthritis, CATARACTS, infertility, and compromised immune function. Low level indicates poor defense against the superoxide anion radical, thereby increasing the risk of free radical damage.
Glutathione peroxidase, GSHPx, was also found DEPRESSED.
GSHPx represents another important front-line enzyme of the antioxidant defense team, using glutathione and selenium to help dispose of hydrogen peroxide and lipid peroxides.
Low levels of GSHPX are associated with a higher risk of oxidative damage in the body, and have been observed in disorders associated with free radicals,
including alcoholism, cancer, atherosclerosis, rheumatoid arthritis and CATARACTS, as well as selenium insufficiency.
Maintaining optimal levels of glutathione, selenium, and ALL ANTIOXIDANTS can help shift the balance away from oxidative stress.
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posted
Man I am going through the same thing you are. I am having the muscle twitching all over the place, major fatigue, weakness in my left shoulder, arm, neck, tongue. Difficulty swallowing (this is the worst symptom for me). Major TMJ problems, muscle atrophy on left side of neck and possibly some atrophy on my tongue.
Western Blot looked like this:
IGM 31++ 34 IND 39 IND 41 IND 45+ All the rest were negative.
IGG 39 IND 41++ 58+ all the rest were negative.
Co-infection Test for Erichliosis HGE was 1:160 meaning I basically am highly positive for that.
Thus far ALS is not out of my mind. Got another EMG a week from today to see if my completely normal EMG done in Feb remains the same which i doubt it will. I would love to say Lyme and Co-infection only but maybe there is something that has been triggered in my body that cant be reversed.
All I know is my tongue looks all wacked out. I am 31 years of age, symptoms started just this past December, been sick ever since. No clinical weakness as of yet but dont wait till that happens, treat it like its Lyme. You may need iV. I am on Biccillin Shots right now to see if i can get some ground on this disease.
Next step is iV which my insurance with not cover. Good to know I am not the only one with these symptoms.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
Luke I've seen your posts and really feel for you. My last EMG was abnormal but not enough for a particular diagnosis. My calves twitch pretty good especially after walking. I'm scared just like you. My grandfather died from ALS but Neuro stated it's highly unlikly for that to be passed on skipping a generation,who knows. They tell me no pain with als but I have plenty. Sounds like you may have a co infection....keep in touch
Posts: 355 | From NY | Registered: Jan 2006
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This test indirectly measures antioxidant status and measures metabolites of various detox pathways. In plain English if not enough antioxidants are present, or not in the right mix, lipids (fats) can be oxidized and produce free radicals.
Your brain is 60 or 70% fat so the test assumes that low levels of antioxidants will cause destruction of brain cells.
I believe in this test. Hubby had extremely high levels of lipid peroxides (breakdown of fats) early in his illness when he was experiencing psychiatric symptoms and brain fog etc.
For him COQ10 at 400mg brought this number almost into the normal range. He is still sick and has many symptoms, but I feel the COQ10 has kept him from having the really severe memory and concentration problems that others have reported.
The 2nd piece of info the test provides is how well the body can detoxify. It is a test for functional performance of the liver.
More and more evidence is linking lack of antioxidants, insufficient good fats and too many toxins to many neurological diseases. It makes sense to me -- something has to malfunction for the disease process to be triggered.
I believe that nutritional status is almost equally important to antibiotics as far as recovery from tickborne illnesses.
This is just my opinion and not medical advice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Still waiting for co-infection tests. Am staying on ABX until further notice. Legs are very weak today
Posts: 355 | From NY | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Treat for lyme and coinfections You have Lyme.
41+ = FlaB 66+ = P66 Oms66 Hsp outer/integral membrane protein 93+ = an immunodominant protoplasmic cylinder antigen, associated with the flagellum {specific for Bb}
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
6, I know what you mean about what I posted, but that's exactly the way the lab reported results to me.
Bea, THANK YOU for your wonderful explaination to 6, me, & others in PLAIN ENGLISH what my report was trying to say. I understood more from yours than that medical jargon I received.
June 6th I go back for my 2 hr. followup going over ALL TESTS done & can't wait for PLAIN ENGLISH on all my additional illnesses/deficiencies.
posted
Thanks to all. I guess I'm worried about ALS. Also last blood test I had a slightly elevated ANA but DR thought nothing of it. I know it's a Lupus indicator but 2 Dr's did not think much of it. I heard ANA and positive RA Factors can alter Lyme tests, but not sure if they meany Elisa or western blot testing
Posts: 355 | From NY | Registered: Jan 2006
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posted
Curious about EMG test also. That indicates a pathway,nerve,muscle problem. Can you have a abnormal EMG with Lyme or co infections
Posts: 355 | From NY | Registered: Jan 2006
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Suggestion. If you are in NY, contact Dr L in NY, he is very good. I started with Dr. J in NC, he saved me.
I also was told that I have RA (before finding the lyme) and my tests show all markers for RA, but I never had it before age 42. Then over night it was there. Really was Lyme. Also had lots of other problems, neuro, eyes, ears, moods, etc, which kept me looking at lyme. All better.
Igenex . Western blot IgM Positive +++23,+28,+/-30,+/-31, +39 +/- 41, +/-45, +58,+66, ++93.
Lots of pain, could not stand on feet, hands would swell, then swelling would move to sholder, then back to other side.
HLA-DR4 positive. RA positive.
DR. J in NC saved my life. Can't say it enough.
Doxy by itself won't do it (my opinion). You really need to be on multiple anti at the same time.
It took me 5 months on orals for the pain in my feet to go away. During the time I was on oral meds (Dr J), my RA doctor(not Dr. J) also had me on Enbrel. I stoped the Enbrel when the orals took the pain away. Boy was my RA doctor surprised.
Have not seen RA doctor in 1 year. Hope not to.
I have been on.
Plaquenil and Lodine for the RA, also was on Doxyclycline, Zithromax at same time. This made me feel great after I got over the herx.
I have also been on Flagy for a week, every month.
In addition to other orals, I did IV and am now on I.M injections of Bicillin 1.2 million units 3 shots one time per week, minocycline, plaquenil, lodine and zith daily.
Muscle twitches have been shut down by doing Methyl B-12 injection each day with folic acid.
I was re-tested for co-infections by Dr. L in NY and found Babesiosis.
Treatment with Mepron, I feel great. Re-tested again and co-infection is negative.
This is a very long road to follow. Don't give up. Take as many meds in combo as you can stand (my opinion). Have regular lab tests. Only drink water and lots of it. Don't eat much sugar. I have not taken any vitamins other than the B-12.
Have your hormone's tested. Mine were low. Supplement if needed.
Fatigue that 2 years ago kept me on the couch is gone. I dream at night again, can run, jump, do anything I want to.
It took atleast 1.75 years before I really started feeling good again.
I know that this is not over, but I hope that in about 6 months I am ready to go off most meds.
However, I do believe that I will always have some inflamation in my system (RA?) maybe.
Just started Mild HBOT. Takes my inflamation away. Only in little finger and one wrist now.
Hope this post helps. Where is the spell check?
AGuess
Posts: 45 | From NC,USA | Registered: Jan 2004
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bettyg
Unregistered
posted
6,
you could do a ALS search; on medical at the top under post reply...show you want posts for last 2-3 months,
then chose search, complete as needed, and ANY DATE, and leave poster blank.
There has been considerable discussion on ALS/lyme. Thought that might help you connect w/others who think they may have this too ... your own support group on mutual illnesses!
posted
Thanks aguess and betty g. Aguess sounds like a long haul for you. I'm awaiting co infection results and another Lyme test. Dr used Quest labs ( I know ) but I'm on doxy 300mg daily, will this affect testing???
Posts: 355 | From NY | Registered: Jan 2006
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bettyg
Unregistered
posted
quote:Originally posted by 6t5frlane: I'm awaiting co infection results and another Lyme test. Dr used Quest labs ( I know ) but I'm on doxy 300mg daily, will this affect testing???
Retesting while ON abx, I recently read you need to be OFF abx for 30 days before testing for western blot. Someone else, please CONFIRM OR DENY this.
I learned this lately when I had all my April/May 06 other body lab tests including western blot from Igx, and ALL CO-INFECTIONS from MDLabs...
posted
I beleive this question has been asked before but for the life of me I cannot remember....ABX yes or no
Posts: 355 | From NY | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I prefer High abx's before test about a week if doing 3 day urine test taken at same time.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Tests are back. Co-Infections were Neg. A Western Blot was Neg but the Eliza ( Elisa ? ) test was positive result was .259, above.163 is positive.. NP told me tests can be unreliable and I have been on 8 weeks Doxy. Thoughts please...Thanks
Posts: 355 | From NY | Registered: Jan 2006
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posted
P.S. Dr used Quest Labs but was told that the Lyme profiles were done at Stonybrook lab ( Quest sent it there according to the Dr )
Posts: 355 | From NY | Registered: Jan 2006
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posted
Anybody else have a opinion here? I really thought the Western Blot might be positive and the elisa neg....
Posts: 355 | From NY | Registered: Jan 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi 65.
Well, it looks like you've already got a WAY positive western blot, from your first post. Why did your doctor want to do another western blot?
I know you say your doctor is "lyme literate" but frankly, repeating a western blot that reads like the one you posted is nonsense. It couldn't be a clearer blot if the freaking tick had personally signed it.
Is he somehow trying to prove you DON'T have lyme or that your IGeneX result was a 'false positive' or something???
I personally wouldn't trust any coinfection testing unless it came from IGeneX. Period. And generally anything from Quest isn't worth the paper it's written on unless you happen to get really, really lucky.
I would find a better LLMD -- one who has recommendations from someone on this board. Your symptoms surely indicate the need for an experienced, aggressive LLMD.
In the face of your symptoms and a western blot like this, a real LLMD would not be waiting to be "convinced."
Good luck to you...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Actually the llmd had nothing to do with the Igenex test. That was done by a Rheumy DR. The current test was done through Quest but the test according to the NP was done by Stonybrook lab NY for Quest. There is a possibility of a false positive I'm told because I have a Pos Rhematoid factor,although Dr Harris @ Igenex did not think so. However Igenex does list this on their site.
Posts: 355 | From NY | Registered: Jan 2006
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posted
You have a positive Western Blot and a positive Elisa -- from 2 different labs at 2 different points in time -- these are more positive results than many on LymeNet have and some of them have been sick and/or in treatment for years.
In my opinion, you have Lyme and that pretty much automatically means you have coinfections.
At this point I would not waste more money on tests, but spend the dollars on a good LLMD who has enough experience with tickborne infections to guide your treatment. If you have a good PCP that is great -- if he is willing to work with a more experienced LLMD that would be ideal.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thanks, I'm still on 300mg Doxy daily from the llmd.Anybody here have any atophy or muscle wasting. My calves are looking pretty poor....and that darn twitching !!!
Posts: 355 | From NY | Registered: Jan 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hey 6t5frlane
here are two links you may find helpful.
hey Luke
Band 31 is Highly reactive/sensitive to lyme. The CDC thought so too and used band 31 to go by other LD markers.
Here are 2 links that muight be helpful in understanding the WB
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I agree with seibertneurolyme and many others here. You have lyme. You need a real LLMD, no LLMD would use Quest for lyme testing. 300 mg of doxy is low for severe neuro lyme. Forget about ALS, the sooner you get correct treatment the better the outcome. There is no quick fix for what you have.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Thanks again. Still troubled by an abnormal EMG test. Getting another on June 20th. Stonybrook lab did the testing for Quest. Any info on them ???
Posts: 355 | From NY | Registered: Jan 2006
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posted
I can relate to the ALS fears...I have had them for at least three years myself. Have had muscle cramping, twitching, weakness, and now jerking for three years. My calves have atrophied at least two inches in the past year.
My last EMG done in October was okay (the third in three years). However, I do know that EMGs can be abnormal for reasons other than ALS, so try not to jump to that conclusion.
ALS tends to be swift...how long have you had your symptoms? The symptoms also do not wax and wane. Are yours constant?
I know your fear and frustration. I have been to numerous neurologists, including the head of George Washington University Neurology, who don't know what is causing my symptoms. At my last visit, the neuro said he thought it was due to my fibromyalgia/chronic fatigue/Lyme problems. HMMMMM... My jaw dropped.
Keep pushing...don't give up.
Luke, let me know how your EMG results are.
Posts: 331 | From virginia | Registered: Nov 2005
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posted
My symptoms have been going on for about 11 months now. After seeing ALS dr in NYC. he had me doing all kinds on Neuro tests ( ya know stand on your heels,toes etc ) says at this time he feels not enough evidence but my calves are weak and twitch. My last EMG stated that there was evidence of a problem but not all around my body to give a diagnosis. What else makes an EMG abnormal??
Posts: 355 | From NY | Registered: Jan 2006
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Yes, there are some others with thyroid issues caused by Lyme and coinfections. Suggest posting that as a new topic for more responses.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
6,
yes, start a new thread with this subject:
"thyroid problems, Graves disease &/or Hashimoto"
you'll get a lot of responses....
Briefly, You can copy/paste this to your new post about thyroids please to save me time .
Hubby has GRAVE'S DISEASE of the eyes determined when he found out he had OVERACTIVE thyroid. He took a radioactive pill at the hospital to kill something.
He's lost 100 lbs. twice during our marriage. When he was 1st dx, and this past 2 yrs. since I was dx with my diabetes 2.
He's sweating non-stop for NON-ENERGENIC activities. He has ESSENTIAL TREMORS, non-stop shaking of his hands, legs, & feet ... hands are the worst.
I had him tested for lyme; believe he had 1 positive on each test. If he were positive, he wouldn't take meds ... not my hubby. It bothers him he has to take his synthroid pill.
He just had his Tsh tested again....changed dosage AGAIN. He's gone from over active to UNDER active, HASHIMOTOs; SAME AS ME! I just learned that thru my total body testing.
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posted
seibertneurolyme, Any info on the EMG and Lyme. I will google and see what I can find
Posts: 355 | From NY | Registered: Jan 2006
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