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Not sure if lyme but doctor suspects it. Help interpreting results?
After months of odd symptoms and having many tests run i went to an LLMD who said based off of symptoms he is highly suspect of lyme. I never had a rash or recall a bite though, and this all started after my miscarriage. A constant toxic feeling in my head, feeling off all the time, and indoor light sensitivity. I have lots of other symptoms also but those are constant and the worst.
My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result.
I have a list of supplements to take and when i take them i feel worse. I am not sure which one/ones are making me feel worse, but i feel even more toxic when taking them. They include: resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid.
I also have a MTHFR mutation. Results read: This patient's sample was analyzed for the MTHFR mutations C677T and A1298C. Two copies of the A1298C mutation were identified. Results for the C677T mutation were negative.Elevated homocysteine levels have not been reported when two copies of the A1298C mutation have been found.
Other results have found me to have Low ATP levels, reactivated Epstein Barr, CD57 of 63, Recent labs came back with high reverse t3 serum (28.6), extremely high dhea-sulfate (578.8), high cortisol (22.4), high M Pneumoniae Igg Abs (232), low Alkaline Phosphatase, S, high A/G ratio, and low creatinine serum.
I know some of this will sound foreign as a lot of it does to me, but can someone explain this to me? Is it possible for other things to cause such bad health issues and results other than lyme? I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic.
I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg. I also have pulsating sensations in these areas. I am only in my 20's, and i want to move forward but don't know how to. I am scared to go on antibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? I just feel lost.
My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result.
I have a list of supplements to take and when i take them i feel worse. I am not sure which one/ones are making me feel worse, but i feel even more toxic when taking them. They include: resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid.
I also have a MTHFR mutation. Results read: This patient's sample was analyzed for the MTHFR mutations C677T and A1298C. Two copies of the A1298C mutation were identified. Results for the C677T mutation were negative.Elevated homocysteine levels have not been reported when two copies of the A1298C mutation have been found.
Other results have found me to have Low ATP levels, reactivated Epstein Barr, CD57 of 63, Recent labs came back with high reverse t3 serum (28.6), extremely high dhea-sulfate (578.8), high cortisol (22.4), high M Pneumoniae Igg Abs (232), low Alkaline Phosphatase, S, high A/G ratio, and low creatinine serum.
I know some of this will sound foreign as a lot of it does to me, but can someone explain this to me? Is it possible for other things to cause such bad health issues and results other than lyme? I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic.
I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg. I also have pulsating sensations in these areas. I am only in my 20's, and i want to move forward but don't know how to. I am scared to go on antibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? I just feel lost.
An MD would have to review the test results and interpret them for you. Tests work in different ways, and that takes a knowledgeable MD to interpret the results.
Some of these tests you mention may rely on activity by your immune system, and if your immune system is suppressed by Lyme (as it can be), then the test could show a false negative -- meaning you are infected but the test says you are not.
That is why many Lyme specialists will use IGeneX tests, because they rely not on your immune system, but on finding bits of Lyme bacteria DNA (genetic material) in your blood. Lyme specialists are more likely to use the IGeneX tests. IGeneX has a website that explains its testing.
To my understanding (but I'm not up to date on this), other tests you list as being negative do not have this issue, but you should confirm that with a Lyme specialist, not somebody like me typing on a website somewhere.
The key to dealing with Lyme is finding a wise MD.
Some of these tests you mention may rely on activity by your immune system, and if your immune system is suppressed by Lyme (as it can be), then the test could show a false negative -- meaning you are infected but the test says you are not.
That is why many Lyme specialists will use IGeneX tests, because they rely not on your immune system, but on finding bits of Lyme bacteria DNA (genetic material) in your blood. Lyme specialists are more likely to use the IGeneX tests. IGeneX has a website that explains its testing.
To my understanding (but I'm not up to date on this), other tests you list as being negative do not have this issue, but you should confirm that with a Lyme specialist, not somebody like me typing on a website somewhere.
The key to dealing with Lyme is finding a wise MD.
Thank you all for the replies. A doctor previous to my LLMD ran a Lyme Western Blot Serum through LabCorp which was negative. I have also had Lyme A/B Wester Blot Reflux run which was negative, Bartonella antibody panel negative, Rocky Mountain Spotted Fever negative, Q Fever Antibodies negative, and Ehrlichia negative. Is it normal for all these to show negative?
I have the same MTHFR mutations. I don't have a high homocysteine level either but have been told that those with those mutations don't detox properly and therefore herxes may be worse than normal.
oops -
I pasted part of your post into my reply above (as the fifth paragraph of my first post), so I could refer to it while typing my reply, but forgot to take it out before I hit 'send'.
This is your paragraph:
"My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result."
Here's my comment:
I think your doc is trying to get your system into as good a shape as possible, so there aren't any significant dietary deficiencies and/or chemical imbalances when the tests are run -- just trying to be sure the background noise is at a low level. However I am a bit puzzled that he would have the IgeneX test run after putting you on antibiotics for a month ... but I'm guessing it is to see if evidence from the bacterial die-off will give a more accurate reading. IGeneX testing looks for DNA of the Lyme bacteria, and perhaps killing a bunch of the bacteria will release a greater amount of the DNA, giving greater yield in the test. Dunno. If you find out, I'd be interested to know, but don't go out of your way. Just take care of yourself! You're on the road to getting better now.
I pasted part of your post into my reply above (as the fifth paragraph of my first post), so I could refer to it while typing my reply, but forgot to take it out before I hit 'send'.
This is your paragraph:
"My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result."
Here's my comment:
I think your doc is trying to get your system into as good a shape as possible, so there aren't any significant dietary deficiencies and/or chemical imbalances when the tests are run -- just trying to be sure the background noise is at a low level. However I am a bit puzzled that he would have the IgeneX test run after putting you on antibiotics for a month ... but I'm guessing it is to see if evidence from the bacterial die-off will give a more accurate reading. IGeneX testing looks for DNA of the Lyme bacteria, and perhaps killing a bunch of the bacteria will release a greater amount of the DNA, giving greater yield in the test. Dunno. If you find out, I'd be interested to know, but don't go out of your way. Just take care of yourself! You're on the road to getting better now.
[part two, continued from above]
I always hated milk when I was a kid, because it gave me a stomach ache ... it turns out we have (genetically based) lactose intolerance
in our family, and once lactose-free milk hit the market a few years ago, I became a milk guzzler. Love the stuff now! So if you've not liked milk previously, try lactose-free. I had such an aversion to milk childhood that I wouldn't drink it unless it was loaded with Quik chocolate powder, but now I don't need the crutch anymore.
(I also take Mg capsules every day still, and it's great stuff. More detail if you want it -- some formulations are better than others, such as any variety that ends in "-ate", like Mg malate. More absorbable by the body.)
You say: "I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg." Mg may help this too. Be sure to tell your doc about this symptom, tho, next time you are there.
"I am only in my 20's, and i want to move forward but don't know how to. I am scared to go on antibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? I just feel lost."
Part of how you are feeling is the Lyme messing with your endocrine system. With treatment, things will look better. Lyme is a rude and nasty disease, and I am amazed at how bad it was, looking back on it now. But take your meds, take your supplements, sleep well, do a little light walking if you're up for it, and just be kind to yourself and know that your body is fighting hard to get you well too. I've been where you are, and I feel really, really good now. I say: go for it! you can do it too.
Let us know how we can help -- it's a good group here.
I always hated milk when I was a kid, because it gave me a stomach ache ... it turns out we have (genetically based) lactose intolerance
in our family, and once lactose-free milk hit the market a few years ago, I became a milk guzzler. Love the stuff now! So if you've not liked milk previously, try lactose-free. I had such an aversion to milk childhood that I wouldn't drink it unless it was loaded with Quik chocolate powder, but now I don't need the crutch anymore.
(I also take Mg capsules every day still, and it's great stuff. More detail if you want it -- some formulations are better than others, such as any variety that ends in "-ate", like Mg malate. More absorbable by the body.)
You say: "I also have really bad pain and odd sensations in my calf muscles, legs, hands, and where my feet meets my leg." Mg may help this too. Be sure to tell your doc about this symptom, tho, next time you are there.
"I am only in my 20's, and i want to move forward but don't know how to. I am scared to go on antibiotics and waste more money on all these supplements only to not really have lyme, but how can i know without trying and seeing if it could be? I just feel lost."
Part of how you are feeling is the Lyme messing with your endocrine system. With treatment, things will look better. Lyme is a rude and nasty disease, and I am amazed at how bad it was, looking back on it now. But take your meds, take your supplements, sleep well, do a little light walking if you're up for it, and just be kind to yourself and know that your body is fighting hard to get you well too. I've been where you are, and I feel really, really good now. I say: go for it! you can do it too.
Let us know how we can help -- it's a good group here.
Greetings -- sorry you are feeling lousy, and now feeling unsure about which way to go.
I'm not medically trained, but I had Lyme and another infection often carried by the ticks (babesiosis), and I remember well how lousy I felt. The best description I could come up with was that I felt like I had a hangover AND the flu, 24/7. Everybody is different tho, because Lyme and its evil little friends affect everyone differently. But feeling lousy, yeah, that's a good description for most of us.
I'm impressed by your new doc's broad approach to treatment. There's no one single way to treat Lyme and its co-infections, but if you're uncomfortable with something the doc suggests, I would not hesitate to ask for the reasoning behind the approach and what the downsides (if any) may be.
Everyone's symptoms are different, due to differences in which co-infections and what reaction the body has to both infection and to various treatments. I never saw a rash or tick on myself either, and I think that's not unusual. I had been ill for a year or more by the time I ended up in the LLMD's office, but it was worth finding a good doc who really understood. Before diagnosis and treatment, I felt like I had a 24/7 combo of a hangover and the flu: not good.
My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result.
About feeling worse when you take the supplements etc., that could be a Herxheimer reaction ('Herx' for short), meaning the symptoms get worse when the bacteria is dying off due to medications you take and they release 'toxins' (whatever they may be) as they die. If Herxing is worse than is tolerable or than you think it ought to be, don't hesitate to call your doc's office and leave a detailed message, or if you're concerned the message may not get through fully, then send a letter or fax or something written. Everybody's metabolism and immune system are different, and when the particular collection of co-infections and meds are added in, there are lots of possible combos that are not fun to tolerate. I was lucky and never felt worse on the meds than I did before diagnosis, but not everyone does.
You also say: "I have a list of supplements to take and when i take them i feel worse." Be sure to tell your doc this, because it may be too many, or too much, for your body to handle, and again, could be Herx-based. Sometimes treatment needs to be slowed down a bit so as not to overwhelm the patient. If it's not a while till your next appointment, think about sending the doc an email or a fax or a letter specifying your issues and concerns -- I found that filtering messages about such things through a doc's staff doesn't necessarily get through as I was trying to convey it, so find a way to go around them if need be.
I have taken some of the ones you list ("resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid" but didn't have any problems. It's a complex interaction among your own body chemistry, the meds (OTC or prescription), and which (co)infections you have, but don't just suffer in silence.
About MTHFR mutation: it's been several years since I was diagnosed and treated, and I don't recall having this conversation with my doc. He may have run the test and seen nothing notable, and so said nothing. As a result, I have not read much about it, but my untutored reading of the results you posted here doesn't (on its surface) seem problematic: C677T was negative; and since you have two copies of A1298C, it looks like you may have dodged a problem there, based on what your post said. To be sure you are comfortable with the situation, do bring it up with your doc so he can clarify the situation. Ditto the levels of the other items listed -- Lyme likes to mess with the whole endocrine/hormonal system, so ask your doc to run through the list with you and explain any measures that are of concern, just so you have a level of comfort with the situation.
I would think your doc would have already discussed any points out of the ordinary, but hearing it directly would be nice, eh. I found that many docs don't try to have those discussions with patients, because a lot of patients just aren't interested in anything but the bottom line, but a good doc can and will tailor the discussion to the level of the patient's interest. Lyme and its co-infections mess with so many parts of the body and mind that it's bound to be a complex situation that changes over time as your treatment proceeds, and I found that just by asking for clarification and meaning from the doc got me the answers I needed ... There are many patients who don't have the background or bandwidth to deal with the details, but many docs will engage if asked to do so. Go for it!
(As an aside, I'm not medically trained, but if these were my results, I would not be overly concerned, but would ask the doc to walk me through the results at the next appointment -- what each item is testing, whether it's out of spec, and how it all fits together.)
You say, "Is it possible for other things to cause such bad health issues and results other than lyme?" Maybe, but your doc would certainly tell you if there were any non-Lyme issues he is perceiving. Lyme does mess with the whole body and mind, and if you are finding it difficult to cope with, call the doc's office and ask for an appointment sooner than your next scheduled one to discuss these points.
You say, "I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic." I hear you. Brings back my memories of flu-and-hangover-combo time for me. Do take the supplements the doc is suggesting -- for example, the magnesium (Mg) he has suggested may have a big effect on your mood -- I have read that Lyme bacteria use up Mg in their reproductive process, in addition to the American diet being short of Mg too.
My LLMD wasn't focussed on supplements and vitamins, so I was reading whatever I could find on what to eat or take to support my poor thrashed body. I am now several years past Lyme treatment, and I *still* take Mg supplements every single day. Makes a very big difference for me! You know how babies are all floppy right after a bottle of warm milk? Part of that is due to a full stomach, the warmth of the milk, being held closely, and .... THE MAGNESIUM IN THE MILK!!! Apparently it's loaded with Mg. Who knew.
[continued in next pane here]
I'm not medically trained, but I had Lyme and another infection often carried by the ticks (babesiosis), and I remember well how lousy I felt. The best description I could come up with was that I felt like I had a hangover AND the flu, 24/7. Everybody is different tho, because Lyme and its evil little friends affect everyone differently. But feeling lousy, yeah, that's a good description for most of us.
I'm impressed by your new doc's broad approach to treatment. There's no one single way to treat Lyme and its co-infections, but if you're uncomfortable with something the doc suggests, I would not hesitate to ask for the reasoning behind the approach and what the downsides (if any) may be.
Everyone's symptoms are different, due to differences in which co-infections and what reaction the body has to both infection and to various treatments. I never saw a rash or tick on myself either, and I think that's not unusual. I had been ill for a year or more by the time I ended up in the LLMD's office, but it was worth finding a good doc who really understood. Before diagnosis and treatment, I felt like I had a 24/7 combo of a hangover and the flu: not good.
My LLMD gave me a supplement list, and recommend i go gluten free. He wants me to do these supplements for a month and then go back and start antibiotics. He then wants to test after a month with igenex as he thinks we may have more of a chance of getting a positive result.
About feeling worse when you take the supplements etc., that could be a Herxheimer reaction ('Herx' for short), meaning the symptoms get worse when the bacteria is dying off due to medications you take and they release 'toxins' (whatever they may be) as they die. If Herxing is worse than is tolerable or than you think it ought to be, don't hesitate to call your doc's office and leave a detailed message, or if you're concerned the message may not get through fully, then send a letter or fax or something written. Everybody's metabolism and immune system are different, and when the particular collection of co-infections and meds are added in, there are lots of possible combos that are not fun to tolerate. I was lucky and never felt worse on the meds than I did before diagnosis, but not everyone does.
You also say: "I have a list of supplements to take and when i take them i feel worse." Be sure to tell your doc this, because it may be too many, or too much, for your body to handle, and again, could be Herx-based. Sometimes treatment needs to be slowed down a bit so as not to overwhelm the patient. If it's not a while till your next appointment, think about sending the doc an email or a fax or a letter specifying your issues and concerns -- I found that filtering messages about such things through a doc's staff doesn't necessarily get through as I was trying to convey it, so find a way to go around them if need be.
I have taken some of the ones you list ("resveratrol, coq10, fish oil, vit d, daily vitamin, magnesium malate, nattokinase, vit c, NAC, acetyl-L-carnitine, and alpha lipoic acid" but didn't have any problems. It's a complex interaction among your own body chemistry, the meds (OTC or prescription), and which (co)infections you have, but don't just suffer in silence.
About MTHFR mutation: it's been several years since I was diagnosed and treated, and I don't recall having this conversation with my doc. He may have run the test and seen nothing notable, and so said nothing. As a result, I have not read much about it, but my untutored reading of the results you posted here doesn't (on its surface) seem problematic: C677T was negative; and since you have two copies of A1298C, it looks like you may have dodged a problem there, based on what your post said. To be sure you are comfortable with the situation, do bring it up with your doc so he can clarify the situation. Ditto the levels of the other items listed -- Lyme likes to mess with the whole endocrine/hormonal system, so ask your doc to run through the list with you and explain any measures that are of concern, just so you have a level of comfort with the situation.
I would think your doc would have already discussed any points out of the ordinary, but hearing it directly would be nice, eh. I found that many docs don't try to have those discussions with patients, because a lot of patients just aren't interested in anything but the bottom line, but a good doc can and will tailor the discussion to the level of the patient's interest. Lyme and its co-infections mess with so many parts of the body and mind that it's bound to be a complex situation that changes over time as your treatment proceeds, and I found that just by asking for clarification and meaning from the doc got me the answers I needed ... There are many patients who don't have the background or bandwidth to deal with the details, but many docs will engage if asked to do so. Go for it!
(As an aside, I'm not medically trained, but if these were my results, I would not be overly concerned, but would ask the doc to walk me through the results at the next appointment -- what each item is testing, whether it's out of spec, and how it all fits together.)
You say, "Is it possible for other things to cause such bad health issues and results other than lyme?" Maybe, but your doc would certainly tell you if there were any non-Lyme issues he is perceiving. Lyme does mess with the whole body and mind, and if you are finding it difficult to cope with, call the doc's office and ask for an appointment sooner than your next scheduled one to discuss these points.
You say, "I feel like i am going to be stuck with this for the rest of my life constantly feeling toxic." I hear you. Brings back my memories of flu-and-hangover-combo time for me. Do take the supplements the doc is suggesting -- for example, the magnesium (Mg) he has suggested may have a big effect on your mood -- I have read that Lyme bacteria use up Mg in their reproductive process, in addition to the American diet being short of Mg too.
My LLMD wasn't focussed on supplements and vitamins, so I was reading whatever I could find on what to eat or take to support my poor thrashed body. I am now several years past Lyme treatment, and I *still* take Mg supplements every single day. Makes a very big difference for me! You know how babies are all floppy right after a bottle of warm milk? Part of that is due to a full stomach, the warmth of the milk, being held closely, and .... THE MAGNESIUM IN THE MILK!!! Apparently it's loaded with Mg. Who knew.
[continued in next pane here]
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