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Lyme test inconclusive
I have some bands 41 and 23 I believe for the IGM. No bands for IGG and a positive babesia test for a supposed past infection. I am so confused. I am experiencing muscle twtiching and internal tremors mainly in legs, head pressure tinnitus and some strange eye strain twitching. I have taken Doxy for 21 days and take Samento and Teasel as well as rife. I also do ONDAMED. So far I can say I am either aggravating my situation or just getting worse. Muscle feels weaker some days and finger tips go numb on left hand left foot worse then my right. I just dont know anymore whats wrong. Maybe I have MS, but I had three MRI's all clear and a right sided EMG that showed nerves and muscles in good condition. Rheumotologist tests all clear except a positive RA but I dont have typical RA symptoms. Does anyone have any idea what to do next.. Confused and getting desperate,. I have a script for minocycline. I also take magnesium for muscle twitching which helps a little still get a weird rolling muscle feeling in legs.
Three weeks of doxy is the "standard" treatment for Lyme. One of the big controversies over Lyme is whether or not this cures it. A whole lot of Lyme patients and LLMDs say "No!" It sounds like you're still infected. You need longer treatment, and your current rheumie won't do it for you. You need a LLMD as soon as possible before you get any sicker.
Have you ever been treated for Babesia? The medical world is incredibly ignorant about it. Even the CDC web page on it says 7-10 days of Mepron is usually sufficient. What joke. I am going on 6 months for my 7+ year long infection and I still have a ways to go.
Many LLMDs believe that if you have Babesia, treatment for Lyme will fail until the Babesia is addressed. This could explain many of the Lyme treatment failures. Having both, I can say there is some kind of weird synergy between them. Both are harder to treat when you have both.
Lots of people have low grade cases for years that flare up when some kind of stress hits, like an injury, surgery, job loss, divorce, death in the family, trauma, etc. For me, chronic symptoms started after 2 years of chronic financial stress, which was 5 years after initial infection. I really went on a downhill slide after I was given steroids for my "asthma", which turned out to be Babesia induced breathing problems. Steroids suppress the immune system which allows both Lyme and Babesia to get worse.
Have you found a local LLMD to see? You can always try a local Lyme support group. They're a great source of referrals, as many doctors treat Lyme quietly so they don't get harrassed when they treat beyond the official guidelines. With your positive test results and ongoing symptoms, you shouldn't be controversial to a doctor who really knows about both diseases.
Have you ever been treated for Babesia? The medical world is incredibly ignorant about it. Even the CDC web page on it says 7-10 days of Mepron is usually sufficient. What joke. I am going on 6 months for my 7+ year long infection and I still have a ways to go.
Many LLMDs believe that if you have Babesia, treatment for Lyme will fail until the Babesia is addressed. This could explain many of the Lyme treatment failures. Having both, I can say there is some kind of weird synergy between them. Both are harder to treat when you have both.
Lots of people have low grade cases for years that flare up when some kind of stress hits, like an injury, surgery, job loss, divorce, death in the family, trauma, etc. For me, chronic symptoms started after 2 years of chronic financial stress, which was 5 years after initial infection. I really went on a downhill slide after I was given steroids for my "asthma", which turned out to be Babesia induced breathing problems. Steroids suppress the immune system which allows both Lyme and Babesia to get worse.
Have you found a local LLMD to see? You can always try a local Lyme support group. They're a great source of referrals, as many doctors treat Lyme quietly so they don't get harrassed when they treat beyond the official guidelines. With your positive test results and ongoing symptoms, you shouldn't be controversial to a doctor who really knows about both diseases.
You're very welcome ... we've both been through the wringer with Lyme and co-infections (me finished with it, knock on wood, and mojo still fighting the good fight), so we truly understand.
I would definitely go see an LLMD, and s/he could diagnose and treat the babesia too. It's all a package, when you've got more than one infection. I too had Lyme with babesia, and I remember the misery well.
Symptoms can indeed flare after a time, and Lyme lasts a very long time if not treated (maybe even forever). There may also be (in my opinion) a seasonal aspect to the infections, so the symptoms rise and fall through the year. When there is more than on infection, they interact in odd ways and it's hard to tell what infection is causing which symptoms.
An LLMD would take a history and consider all your symptoms, order tests, and then tease out of the data what you have and what to treat first. Sometimes it happens that some infections get 'hidden' behind others and don't come out for detection until after some of the other infections have been cured.
Since you have insurance, use it!!! You might post a new question on this board like "Need LLMD in NYC" or " ... within an hour of NYC" or whatever, and see what responses you get. We do NOT post LLMD's names in the open here, but you might get responses through the private message (PM) system on this page. At the top, in the blue bar is a link called 'My Medhelp'. Hover over it and it will bring up a menu, the 6th item being 'inbox'. If you see a number after 'inbox' it means you have a message from someone here responding to your question.
You can also go to ILADS online for a referral as mentioned above.
I know how hard this all is to figure out when your brain feels like is asleep, but you can do it. After all, you found us! Let us know how we can help. Keep us posted.
(PS, thanks for sending your respond to mojo and to me, but you can reply without addressing it anyone, or address it to one of us and then in the message put both our names, whatever makes it easy for you. I remember 'brain fog' all too well, and sometimes finding the refrigerator was a major effort, never mind dealing with a website, which are designed only by people who already know how it works. Ha.)
I would definitely go see an LLMD, and s/he could diagnose and treat the babesia too. It's all a package, when you've got more than one infection. I too had Lyme with babesia, and I remember the misery well.
Symptoms can indeed flare after a time, and Lyme lasts a very long time if not treated (maybe even forever). There may also be (in my opinion) a seasonal aspect to the infections, so the symptoms rise and fall through the year. When there is more than on infection, they interact in odd ways and it's hard to tell what infection is causing which symptoms.
An LLMD would take a history and consider all your symptoms, order tests, and then tease out of the data what you have and what to treat first. Sometimes it happens that some infections get 'hidden' behind others and don't come out for detection until after some of the other infections have been cured.
Since you have insurance, use it!!! You might post a new question on this board like "Need LLMD in NYC" or " ... within an hour of NYC" or whatever, and see what responses you get. We do NOT post LLMD's names in the open here, but you might get responses through the private message (PM) system on this page. At the top, in the blue bar is a link called 'My Medhelp'. Hover over it and it will bring up a menu, the 6th item being 'inbox'. If you see a number after 'inbox' it means you have a message from someone here responding to your question.
You can also go to ILADS online for a referral as mentioned above.
I know how hard this all is to figure out when your brain feels like is asleep, but you can do it. After all, you found us! Let us know how we can help. Keep us posted.
(PS, thanks for sending your respond to mojo and to me, but you can reply without addressing it anyone, or address it to one of us and then in the message put both our names, whatever makes it easy for you. I remember 'brain fog' all too well, and sometimes finding the refrigerator was a major effort, never mind dealing with a website, which are designed only by people who already know how it works. Ha.)
I appreciate both of your time. I am so exhausted and in fear of not bing able to work. I'm a single mother and can't think of not working as an option. The symptoms are just scary and I a have anxiety to boot. I am hoping to go to an LLmd in manhattan. I am wondering if I should approach trying to get medication for babesia I beleive I was infected 6 years ago but went undiagnosed. I am wondering why my symptoms have become so severe since November. Have either of you ever seen symptoms flaring after so long a period?
I appreciate both of your time. I am so exhausted and in fear of not bing able to work. I'm a single mother and can't think of not working as an option. The symptoms are just scary and I a have anxiety to boot. I am hoping to go to an LLmd in manhattan. I am wondering if I should approach trying to get medication for babesia I beleive I was infected 6 years ago but went undiagnosed. I am wondering why my symptoms have become so severe since November. Have either of you ever seen symptoms flaring after so long a period?
Hi,
In addition to what Jackie said, I just want to say that as someone who has had Babesia, doxy does not work for it. You are usually given an anti malaria med call mepron, or malarone.
If you feel you are getting worse after taking doxy, it could be a herxheimer reaction. Herx for short which means a dye off of the bugs and your body is releasing toxins thus making you feel worse.
You most likely have Lyme and Babs which is not unusual and would need a much longer dosage of doxy for the Lyme. That is why seeing an LLMD as Jackie mentioned would be your best bet.
I was misdiagnosed with MS and Lupus as well as other illnesses so there is a good chance you don't have RA but the LLMD could tell.
Keep us posted and take care.
In addition to what Jackie said, I just want to say that as someone who has had Babesia, doxy does not work for it. You are usually given an anti malaria med call mepron, or malarone.
If you feel you are getting worse after taking doxy, it could be a herxheimer reaction. Herx for short which means a dye off of the bugs and your body is releasing toxins thus making you feel worse.
You most likely have Lyme and Babs which is not unusual and would need a much longer dosage of doxy for the Lyme. That is why seeing an LLMD as Jackie mentioned would be your best bet.
I was misdiagnosed with MS and Lupus as well as other illnesses so there is a good chance you don't have RA but the LLMD could tell.
Keep us posted and take care.
Welcome to MedHelp --
You give a good history, detailed but to the point, which is hard to do when you're not feeling well and when it's all so confusing.
I see you are in southern NY state, so you are in Lyme territory for certain.
Some quick comments:
On your [Western blot?] test, Band 23 is specific to Lyme disease, meaning that no other infection will make that band light up.
Band 41 could be Lyme or something else.
IgM means a more recent infection, while IgG means an older infection, so each one matters: it's simply a timing measure of where you might be in an infection.
If you were treated previously for babesia, I don't know that the test would still show any indication of that. It leaves suspicion, esp. given your symptoms now, that you were either not cured or have been re-infected. If you are having night sweats, then that is a point in favor of a current infection. And there is no immunity to babesia that I know of: if you get it once and cure it, you can still get it again, as far as I know.
The treatment your docs have given you (3 weeks of doxy) may well not be enough, to my understanding (I'm not medically trained, but had babs and Lyme too). And I don't think babs is treated with doxy, ever.
Interesting your docs would give you *three* MRIs but not take Lyme and babs seriously. This would tell me to find a new doc without delay. You seem to be getting the mainstream medicine version of tickborne disease treatment, and it is very often inadequate.
In your situation, I would find a Lyme specialist, an LLMD (patient slang for a 'Lyme-literate MD', meaning a doc who takes Lyme and its coinfections more seriously than it seems your docs do). I went through 20 docs before getting a Lyme diagnosis, so been there, done that.
Rheumatologists are among the 'Lyme deniers' who do not take it seriously, so I'm not surprised at the reaction you got. I'd move on.
Interesting that magnesium helps you ... did you know that Lyme uses up magnesium in its reproductive process, so its easy to get deficient when one has ... yes, Lyme! Your symptoms sound similar to those in Lyme.
What to do next? I would find an LLMD for an evalution. If you email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel, they will send you names of LLMDs nearby.
If you have copies of the tests done already, it may help the LLMD see into your recent past, but if it's a hassle or you think the docs might react badly if you ask for copies now, then I'd just skip it.
Good for you for your independent thinking and willingness to work the problem to figure it out ... let us know how we can help, okay? But I'd *definitely* find an LLMD without delay.
Take care, and please let us know how you do and what you do -- sending you all good wishes!
You give a good history, detailed but to the point, which is hard to do when you're not feeling well and when it's all so confusing.
I see you are in southern NY state, so you are in Lyme territory for certain.
Some quick comments:
On your [Western blot?] test, Band 23 is specific to Lyme disease, meaning that no other infection will make that band light up.
Band 41 could be Lyme or something else.
IgM means a more recent infection, while IgG means an older infection, so each one matters: it's simply a timing measure of where you might be in an infection.
If you were treated previously for babesia, I don't know that the test would still show any indication of that. It leaves suspicion, esp. given your symptoms now, that you were either not cured or have been re-infected. If you are having night sweats, then that is a point in favor of a current infection. And there is no immunity to babesia that I know of: if you get it once and cure it, you can still get it again, as far as I know.
The treatment your docs have given you (3 weeks of doxy) may well not be enough, to my understanding (I'm not medically trained, but had babs and Lyme too). And I don't think babs is treated with doxy, ever.
Interesting your docs would give you *three* MRIs but not take Lyme and babs seriously. This would tell me to find a new doc without delay. You seem to be getting the mainstream medicine version of tickborne disease treatment, and it is very often inadequate.
In your situation, I would find a Lyme specialist, an LLMD (patient slang for a 'Lyme-literate MD', meaning a doc who takes Lyme and its coinfections more seriously than it seems your docs do). I went through 20 docs before getting a Lyme diagnosis, so been there, done that.
Rheumatologists are among the 'Lyme deniers' who do not take it seriously, so I'm not surprised at the reaction you got. I'd move on.
Interesting that magnesium helps you ... did you know that Lyme uses up magnesium in its reproductive process, so its easy to get deficient when one has ... yes, Lyme! Your symptoms sound similar to those in Lyme.
What to do next? I would find an LLMD for an evalution. If you email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel, they will send you names of LLMDs nearby.
If you have copies of the tests done already, it may help the LLMD see into your recent past, but if it's a hassle or you think the docs might react badly if you ask for copies now, then I'd just skip it.
Good for you for your independent thinking and willingness to work the problem to figure it out ... let us know how we can help, okay? But I'd *definitely* find an LLMD without delay.
Take care, and please let us know how you do and what you do -- sending you all good wishes!
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