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9th day of Biaxin for Lyme..Question!!!
I started taking Biaxin 9 days ago (twice a day orally) to treat my lyme until i get in with the infectious disease dr(who is Lyme Literate), and then I will most likely be treated with the IV antibiotics at that point. I was bit 4yrs ago. I have been told I have MS, Rheumatoid Arthritis, Graves disease..etc. I was diagnosed with Fibromyalgia 4yrs ago shortly after I got bit, and then CFS a year after that. About a yr ago my husband and I came across a picture of the bullseye rash that comes with the Lyme and my husband goes, "hey thats the rash u had a few yrs ago when u said 'I think I have ringworm or something'". I had NO idea what it was and we lived in a woody, buggy area so my husband was like its probabaly just a bug bite, i dont think its "ringworm"lol" Anyway, I got the flu like symptoms shortly after the rash..like wks, It was early summer so I found it odd I had the flu, but still didnt think much of it. I was miserable. Had a fever, looked like a bullfrog bc my glands were soo huge, chills. just miserable. Anyway, then a couple mos after that I started getting extremely TIRED, and weak, heart palpatations and having a hard time breathing. Got admitted to the Hospital bc they saw my "palpatations" on the machine(brain fog to the max right now cant think of the name of the machine even tho I know it), anyway, they said "everything looked ok" but they wanted me to wear a holter monitor for 2 wks so I did, everything was fine. Then I just got used to the palpatations and for awhile they went away. Then a couple months after that EXTREME dizziness set in. I could not leave my house or even walk to the kitchen it was TERRIBLE. went to the ER after a few days of it and they told me "vertigo" and gave me antivert. I still take the antivert on my bad days, weeks, months. Everything is always changing. Anyway, I could go on and on. I am now pretty much disabled. Cant care for my daughter without the help of my mom bc I am so sick. I am soo weak and tired, memory loss, confusion, muscle twitches, feels like I dont have control of my body sometimes(like today it is soo hard to even type this or think straight bc I feel like everything is extra hard today and my vision is blurry as He**) Anyway, there is so much more but I would be here all day. I have went to so many different drs. Once I figured out I had lyme I told my dr about the rash I had had, and even told him to look at my chart for the last 4yrs,.,I got sicker and sicker since the bite/rash..and he says "u dont have lyme disease." so I go to another dr,..he says "u dont have lyme" so I go to another one who says the same thing but tests me for it to shut me up pretty much. well the test came back negative(he did the bloodtest..ELISA I THINK but not exactly sure,.i know it was a blood test tho, and sent to mayo clinic). It came back negative. I BAWLED my eyes out all dday long bc i KNOW with everything I have that LYME is doing this to me! Anyway my most recent dr referred me to Infectious disease dr and appt is in may. He gave me 40 pills(20days worth of biaxin/clarithromycin). the first day I felt like I was gonna die, then I started feeling better actually..my joints hurt less,. Maybe its a coincidence idk. But I felt better than usual days 3-8 of the antibiotiics, and now Im on the 9th day and I feel WIERD..like dizzy, confusion, dont have control of my body movements or speach, sound lk im drunk kind of, blurred vision, joint pain..etc.. Is this normal?
Early in my treatment my Physician's Assistant asked multiple times if I had any thinning of my skin or other skin changes. She said they see it sometimes in Lyme patients.
I looked terrible when I was sicker than I am now. Now I just took tired and worn out. But I knew I was improving when I would do FaceTime with my mom and she'd say brightly, "You look better!" This is as I'm looking at my own face thinking I looked old, pale, and haggard. I shudder to think how bad I looked at my worst. I don't think I have any pictures, which is just fine with me.
I still think I look several years older than I am. It doesn't help that in the last 6-8 months my medications have made my hair thin, dry and straw-like. I still feel crummy most of the time thanks to my Babesia, and look forward to the day when I both feel and look better and I'm not cringing at myself on FaceTIme!
I looked terrible when I was sicker than I am now. Now I just took tired and worn out. But I knew I was improving when I would do FaceTime with my mom and she'd say brightly, "You look better!" This is as I'm looking at my own face thinking I looked old, pale, and haggard. I shudder to think how bad I looked at my worst. I don't think I have any pictures, which is just fine with me.
I still think I look several years older than I am. It doesn't help that in the last 6-8 months my medications have made my hair thin, dry and straw-like. I still feel crummy most of the time thanks to my Babesia, and look forward to the day when I both feel and look better and I'm not cringing at myself on FaceTIme!
This is for ALL of u ladies.. I have aged noticeably since i got sick. I dont really care anymore. I am just womdering if this is normal? I put up a pic i was wondering if u ladies could take a look at on my profile..its the most recent one with my breast(and how bad my skin looks). Can anyone relate?
I even made a side by side picture thing of my deteriorating health. U can see it in my eyes mainly but to someone who doesnt know me i would probably appear to look "just FINE". Well I SURE as he** dont feel anywhere near fine! Anyway, I have another question. My skin(especially on my chest) has gotten extremely thin and wrinky in only a span of 2yrs., U would not even believe how bad it looks. If someone looked at the pic, not my face in it they would guess I was in my 60's 70's I kid u not! do u think that has anything to do with lyme? or maybe something else, or just aging from the stress? I will put the pic on my profile actually..no one knows me personally here & I dont think i have to worry about anyone being like "omg she looks terrible" or being embarrassed but i really want u ladies to check it out and tell me what u think." sorry if this is inappropriate but I just dont understand why my skin has became this way within 3yrs..
I even made a side by side picture thing of my deteriorating health. U can see it in my eyes mainly but to someone who doesnt know me i would probably appear to look "just FINE". Well I SURE as he** dont feel anywhere near fine! Anyway, I have another question. My skin(especially on my chest) has gotten extremely thin and wrinky in only a span of 2yrs., U would not even believe how bad it looks. If someone looked at the pic, not my face in it they would guess I was in my 60's 70's I kid u not! do u think that has anything to do with lyme? or maybe something else, or just aging from the stress? I will put the pic on my profile actually..no one knows me personally here & I dont think i have to worry about anyone being like "omg she looks terrible" or being embarrassed but i really want u ladies to check it out and tell me what u think." sorry if this is inappropriate but I just dont understand why my skin has became this way within 3yrs..
Thankyou so much for your support and great advice! It means more than u can imagine!!!
The problem is that since mine is xr(timed release), what would happen is supposedly the Mg makes it all release at once rather than over the entire day. I called pharmatcist and he was like "Mg doesnt help lyme". I'm like ok I was just mentioning i had lyme, i didnt ask if it "helped or cured" it or not a**. lol. Then he's like "I'm sure in small amts it will be fine". I might as well have asked my 12yr old neighbor. lol. The internet is soo much more helpful than any drs or pharmacists I swear!
I am all about vitamins/supplements so I am gonna just try it. And take less tomorrow like u suggested! Y'all are the BEST! I dont feel so alone!
I have another question...where to i look on ilads {dot} o r g for the list of drs? i tried to become a member but it said only for drs.
This might be a dumb question.. what does FWIW mean? lol
And also, I am from Indiana and have indiana medicaid, is there any sites or groups for indiana lymes or where to find the LLMDS? Isnt so damn crazy how hush hush everyone is about lyme? Lord help us all! The healthcare system in our counrty is just so wrong!
I am all about vitamins/supplements so I am gonna just try it. And take less tomorrow like u suggested! Y'all are the BEST! I dont feel so alone!
I have another question...where to i look on ilads {dot} o r g for the list of drs? i tried to become a member but it said only for drs.
This might be a dumb question.. what does FWIW mean? lol
And also, I am from Indiana and have indiana medicaid, is there any sites or groups for indiana lymes or where to find the LLMDS? Isnt so damn crazy how hush hush everyone is about lyme? Lord help us all! The healthcare system in our counrty is just so wrong!
Oh, yeah, and I agree with the comment about the Herxheimer reaction. What you're describing on Biaxin is consistent with "herxing." There's plenty out there to read about it.
It's officially called the "Jarisch Herxheimer reacton." It's an intensification of symptoms due to the bacteria die-off process caused by the antibiotics. Offical descriptions call it "mild" and lasting only a day or so, yet another controversial aspect of Lyme. Well, that's a horribly inadequate description for what many late stage patients go through. Some people suffer quite a bit from herxing. Mine ranged from mild to moderate, but not on every medication. A herx on Biaxin says you definitely have intracellular Lyme, which is typical in long term cases.
If you didn't have Lyme, you probably wouldn't have noticed anything at all while taking Biaxin. Even if your herxing doesn't convince your doctor, it should convince you.
I was on Biaxin for a couple months. It was one of many meds I've been on in my 16 months of treatment (and counting). My doc gives it along with Plaquenil, which he said makes it up to 40% more effective at penetrating cells to kill the bacteria. Since you're herxing already, you probably don't need the extra boost at this point.
It's officially called the "Jarisch Herxheimer reacton." It's an intensification of symptoms due to the bacteria die-off process caused by the antibiotics. Offical descriptions call it "mild" and lasting only a day or so, yet another controversial aspect of Lyme. Well, that's a horribly inadequate description for what many late stage patients go through. Some people suffer quite a bit from herxing. Mine ranged from mild to moderate, but not on every medication. A herx on Biaxin says you definitely have intracellular Lyme, which is typical in long term cases.
If you didn't have Lyme, you probably wouldn't have noticed anything at all while taking Biaxin. Even if your herxing doesn't convince your doctor, it should convince you.
I was on Biaxin for a couple months. It was one of many meds I've been on in my 16 months of treatment (and counting). My doc gives it along with Plaquenil, which he said makes it up to 40% more effective at penetrating cells to kill the bacteria. Since you're herxing already, you probably don't need the extra boost at this point.
You do indeed sound like a case of late stage Lyme DIsease. A bulls eye rash is ALWAYS definitive for Lyme Disease, so the two doctors who refused to test you are clearly ignorant of the disease. All your symptoms are consistent with it, too. You could also have coinfectoins making you sicker. Babesia and Bartonella are most common, but Ehrlichia and Anaplasma can also be nasty.
It does sound like you first got it when you were 5, and probably got reinfected when you got the bulls eye rash. A second exposure can trigger more symptoms and make someone much sicker. I read about a study in mice where two groups were each given a different strain of Lyme. A third group was given both. The group with both was universally sicker than the other two groups with only one.
An Infectious DIsease doctor is NOT an LLMD. LLMD is what we patients use to describe a doctor who is "Lyme Literate." Infectious DIsease doctors are required by the IDSA to conform to their guideliness which are incredibly restrictive and deny many cases for a variety of reasons. They sometimes persecute doctors who stray outside the guidelines, even as they insist the guidelines are "voluntary."
LLMDs are often family practitioners specializing in Lyme. The good ones belong to ILADS, or at least go through their training and attend their conferences. Some of them do not take insurance, as insurance companies often restrict coverage of Lyme treatment as per the IDSA guidelines. An ID doctor will treat you for 1 or 2 months of antibiotics, regardless of whether you're well or not. You'll have to get to a good LLMD if you want to get well, especially since you've had it so long.
Several studies have shown that the ELISA misses 30-35% of actual Lyme cases. It is actually a poor screening test, but the CDC won't back off it despite years of complaints. (They appear to hate controversy and ignore it as much as possible.) You need a Western Blot. It is more likely to show Lyme specific antibodies. Unfortunately, infectious disease doctors will rarely order a WB without a positive ELISA thanks to the CDC testing protocol. They will rarely diagnose someone without positives on both tests.
The CDC protocol was developed for sampling purposes and so they wanted a very high accuracy on positives to ensure minimal false positives. They weren't concerned about false negatives becase this was for sampling purposes, not for diagnosis. Well, a few years later it was adopted as a diagnostic absolute. This has been devastating for thousands of Lyme patients who test false negative. The testing was not validated in other regions of the country, and I am of the opinion that people who get Lyme outside New England are more likely to test false negative due to genetic variation of the bacteria.
You'll want to get a Western Blot at IGeneX, a specialty lab that is much better at finding Lyme than other labs. They report Lyme specific antibodies that other labs ignore. If I'd had my Western Blot at a regular lab, it would have been negative on everything except for band 41, which is positive on almost everyone regardless of exposure to Lyme. Only IGeneX showed that I had two other Lyme specific bands, calling my result a positive.
It can take a while to get into a good LLMD, and this is going into peak Lyme season as well as vacation season, making waiting lists longer. I encourage you strongly to find one now and book an appointment. Go ahead to the infectious disease doc to see if s/he will diagnose you and get you started on treatment. But I've heard sooo many bad stories of ID docs... don't get your hopes too high.
Local Lyme support groups can be very helpful in finding a LLMD. ILADS is an excellent source, but a local group can help you narrow in on the good ones and the ones who take insurance.
One of the hardest parts of the Lyme Disease journey is realizing that doctors aren't going to be your champion. You and your family will have to be your own champion and don't be discouraged by doctors who dismiss you, even as you're severely ill. I had to go through that, too. Best thing I ever did was go to my LLMD. I think my Lyme and coinfections could have killed me if I had contined to go on untreated. A dozen really good doctors failed to help me out of ignorance or defiance.
On the topic of magnesium, I encourage you to try epsom salt baths. It results in the magnesium being absorbed directly into your tissues where you need it, rather than going through the gut and blood stream with oral supplements. You can also try magnesium oil, which you rub lightly on the skin. This helps keep your skin soft, but too much is uncomfortable.
You really need the magnesium given your heart issues. I have had them, too. Lyme can affect the nerves to the heart, disrupting normal heart rythms (heart block, tachycardia), but it can also infect the heart itself. Magnesium soothes an irritated heart and is necessary for muscle and nerve function. Since Lyme affects both muscles and nerves and it eats up most of your magnesium reserves, you need to replace that lost magnesium to help them function.
I would get bad twitching without my magesium supplements, too. I was hospitalized and hadn't had my Mg in 24 hours, and both my legs started twitching like crazy. I showed my hurse and hospitalist, and they just stared at me. I had to ask if they could see it and they quietly said, Yes.
The hospitalist got defensive saying he didn't see magnesium deficiency on the symptom list I gave him when I was admitted via the ER. I assured him it was. That was my first clue that he didn't actually read what I gave him, and I was unlikely to be taken seriously there. It's a very good hospital with rankings high on the US News and World Report list of best hospitals, and yet they insisted I did not have Lyme or Babesia and discharged me with a shrug and a bottle of Vicodin.
It is only in hindsight that I realize how severely ill I really was, but because they couldn't see it in their various tests and scans, they weren't that worried about me. Every single organ in my GI tract was affected, along with my heart and brain, not to mention my chronic breathing problems and severe abdominal and rib pain. The only thing that saved me from being packed off to a psych hospital was my numerous brain lesions. Nobody could deny those. So off to the MS specialist I went. She was professional and kind enough not to mock me about Lyme Disease, although she didn't believe I had it. She did a full workup and said she did not believe I had MS, even as she had no other suggestions to offer.
You are welcome here. Your story is all too familiar, and you can get support and encouragement from others who know what you're going through.
It does sound like you first got it when you were 5, and probably got reinfected when you got the bulls eye rash. A second exposure can trigger more symptoms and make someone much sicker. I read about a study in mice where two groups were each given a different strain of Lyme. A third group was given both. The group with both was universally sicker than the other two groups with only one.
An Infectious DIsease doctor is NOT an LLMD. LLMD is what we patients use to describe a doctor who is "Lyme Literate." Infectious DIsease doctors are required by the IDSA to conform to their guideliness which are incredibly restrictive and deny many cases for a variety of reasons. They sometimes persecute doctors who stray outside the guidelines, even as they insist the guidelines are "voluntary."
LLMDs are often family practitioners specializing in Lyme. The good ones belong to ILADS, or at least go through their training and attend their conferences. Some of them do not take insurance, as insurance companies often restrict coverage of Lyme treatment as per the IDSA guidelines. An ID doctor will treat you for 1 or 2 months of antibiotics, regardless of whether you're well or not. You'll have to get to a good LLMD if you want to get well, especially since you've had it so long.
Several studies have shown that the ELISA misses 30-35% of actual Lyme cases. It is actually a poor screening test, but the CDC won't back off it despite years of complaints. (They appear to hate controversy and ignore it as much as possible.) You need a Western Blot. It is more likely to show Lyme specific antibodies. Unfortunately, infectious disease doctors will rarely order a WB without a positive ELISA thanks to the CDC testing protocol. They will rarely diagnose someone without positives on both tests.
The CDC protocol was developed for sampling purposes and so they wanted a very high accuracy on positives to ensure minimal false positives. They weren't concerned about false negatives becase this was for sampling purposes, not for diagnosis. Well, a few years later it was adopted as a diagnostic absolute. This has been devastating for thousands of Lyme patients who test false negative. The testing was not validated in other regions of the country, and I am of the opinion that people who get Lyme outside New England are more likely to test false negative due to genetic variation of the bacteria.
You'll want to get a Western Blot at IGeneX, a specialty lab that is much better at finding Lyme than other labs. They report Lyme specific antibodies that other labs ignore. If I'd had my Western Blot at a regular lab, it would have been negative on everything except for band 41, which is positive on almost everyone regardless of exposure to Lyme. Only IGeneX showed that I had two other Lyme specific bands, calling my result a positive.
It can take a while to get into a good LLMD, and this is going into peak Lyme season as well as vacation season, making waiting lists longer. I encourage you strongly to find one now and book an appointment. Go ahead to the infectious disease doc to see if s/he will diagnose you and get you started on treatment. But I've heard sooo many bad stories of ID docs... don't get your hopes too high.
Local Lyme support groups can be very helpful in finding a LLMD. ILADS is an excellent source, but a local group can help you narrow in on the good ones and the ones who take insurance.
One of the hardest parts of the Lyme Disease journey is realizing that doctors aren't going to be your champion. You and your family will have to be your own champion and don't be discouraged by doctors who dismiss you, even as you're severely ill. I had to go through that, too. Best thing I ever did was go to my LLMD. I think my Lyme and coinfections could have killed me if I had contined to go on untreated. A dozen really good doctors failed to help me out of ignorance or defiance.
On the topic of magnesium, I encourage you to try epsom salt baths. It results in the magnesium being absorbed directly into your tissues where you need it, rather than going through the gut and blood stream with oral supplements. You can also try magnesium oil, which you rub lightly on the skin. This helps keep your skin soft, but too much is uncomfortable.
You really need the magnesium given your heart issues. I have had them, too. Lyme can affect the nerves to the heart, disrupting normal heart rythms (heart block, tachycardia), but it can also infect the heart itself. Magnesium soothes an irritated heart and is necessary for muscle and nerve function. Since Lyme affects both muscles and nerves and it eats up most of your magnesium reserves, you need to replace that lost magnesium to help them function.
I would get bad twitching without my magesium supplements, too. I was hospitalized and hadn't had my Mg in 24 hours, and both my legs started twitching like crazy. I showed my hurse and hospitalist, and they just stared at me. I had to ask if they could see it and they quietly said, Yes.
The hospitalist got defensive saying he didn't see magnesium deficiency on the symptom list I gave him when I was admitted via the ER. I assured him it was. That was my first clue that he didn't actually read what I gave him, and I was unlikely to be taken seriously there. It's a very good hospital with rankings high on the US News and World Report list of best hospitals, and yet they insisted I did not have Lyme or Babesia and discharged me with a shrug and a bottle of Vicodin.
It is only in hindsight that I realize how severely ill I really was, but because they couldn't see it in their various tests and scans, they weren't that worried about me. Every single organ in my GI tract was affected, along with my heart and brain, not to mention my chronic breathing problems and severe abdominal and rib pain. The only thing that saved me from being packed off to a psych hospital was my numerous brain lesions. Nobody could deny those. So off to the MS specialist I went. She was professional and kind enough not to mock me about Lyme Disease, although she didn't believe I had it. She did a full workup and said she did not believe I had MS, even as she had no other suggestions to offer.
You are welcome here. Your story is all too familiar, and you can get support and encouragement from others who know what you're going through.
And speaking of 'stupid doctor' stories:
When I was early in my Lyme adventure, I figured out that Mg supplements made a big difference, and mentioned it to one of the 20 MDs I saw in search of a diagnosis. His reaction was that I would damage my kidneys and that the normal diet contains all the Mg one needs. Full stop.
Well, my kidneys are holding up fine, and Mg does wonders for not only muscle twitching in Lyme but also mood and outlook. Love the stuff!
I've also recently started drinking milk again after many years avoiding it due to lactose intolerance, and now that there are truly lactose-free varieties, I am finding that the Mg improves my 'emotional resilience' and energy levels ... and considering how stressful life is these days, it is badly needed. fwiw.
When I was early in my Lyme adventure, I figured out that Mg supplements made a big difference, and mentioned it to one of the 20 MDs I saw in search of a diagnosis. His reaction was that I would damage my kidneys and that the normal diet contains all the Mg one needs. Full stop.
Well, my kidneys are holding up fine, and Mg does wonders for not only muscle twitching in Lyme but also mood and outlook. Love the stuff!
I've also recently started drinking milk again after many years avoiding it due to lactose intolerance, and now that there are truly lactose-free varieties, I am finding that the Mg improves my 'emotional resilience' and energy levels ... and considering how stressful life is these days, it is badly needed. fwiw.
FWIW----- I've taken magnesium malate for years. If I run out and go without a couple of days my leg twitches come back! I can't say I 'feel a lot better on it' since I have other health issues clouding how I feel and it's not a 'cure' for Lyme----- but I won't stop taking it because I know it' helping.
As with all supplements (and drugs) ---- a little might be enough. Too much can do harm.
I take calcium citrate in a separate capsule.
"The body also needs calcium for muscles to move and for nerves to carry messages between the brain and every body part. In addition, calcium is used to help blood vessels move blood throughout the body and to help release hormones and enzymes that affect almost every function in the human body."
http://ods.od.nih.gov/factsheets/Calcium-QuickFacts/
I figure that with Lyme I need all the help I can get------ and use these supplements because of that. (grin)
Another factoid-----taking blood serum tests for mg and ca do NOT reflect what is in the body. An ND once had me do a blood test for the minerals in my body. Mg. and ca. were low even though I ate well and took supplements. I was confused and went to the Internet and pubmed to find answers.
File under: Something doctors don't always tell you.
As with all supplements (and drugs) ---- a little might be enough. Too much can do harm.
I take calcium citrate in a separate capsule.
"The body also needs calcium for muscles to move and for nerves to carry messages between the brain and every body part. In addition, calcium is used to help blood vessels move blood throughout the body and to help release hormones and enzymes that affect almost every function in the human body."
http://ods.od.nih.gov/factsheets/Calcium-QuickFacts/
I figure that with Lyme I need all the help I can get------ and use these supplements because of that. (grin)
Another factoid-----taking blood serum tests for mg and ca do NOT reflect what is in the body. An ND once had me do a blood test for the minerals in my body. Mg. and ca. were low even though I ate well and took supplements. I was confused and went to the Internet and pubmed to find answers.
File under: Something doctors don't always tell you.
Just a thought----- and it's JUST a thought, from a layperson not a doctor!
If a person is on Adderal but wants to take magnesium but doesn't because of mags. potentiation of Adderal------would it be possible to just take less Adderal to compensate?
If that seems doable----- PLEASE RUN THIS BY YOUR DOCTOR FIRST!
Chemicals and our bodies are strange bedfellows.
If a person is on Adderal but wants to take magnesium but doesn't because of mags. potentiation of Adderal------would it be possible to just take less Adderal to compensate?
If that seems doable----- PLEASE RUN THIS BY YOUR DOCTOR FIRST!
Chemicals and our bodies are strange bedfellows.
Sorry, I don't know. It's all a matter of chemicals -- whether drugs or herbs or food. You might ask your doc or pharmacist what a safe dose would be given your adderall intake, tho of course everyone is different.
Or ... you might try Epsom salt baths or foot soaks. The Mg is absorbed through the skin, so you won't know what dose you're getting. Hard to say.
Hope you feel better soon.
Or ... you might try Epsom salt baths or foot soaks. The Mg is absorbed through the skin, so you won't know what dose you're getting. Hard to say.
Hope you feel better soon.
I take adderall xr and I am told that Mg is a potentiator(it makes it work better) but it can make it work TOO good and can be dangerous, and all the ppl that actually abuse their add meds do that(thats how I kno it does that) but I dont abuse mine so Mg scares the s**** out of me, lol. The addeall helps my brain fog alot, but not fully of course, but I dont plan on getting off of it, at least until im better and can function normally. So do u know if there is any Mg that is safe to take in combination with adderall? bc i will be all over that if im able to take it! lol anything that helps!!!!
PS, meant to say: don't be too disappointed if the infectious disease (ID) doc is not keen on Lyme. ID docs in general are not Lyme 'believers'. They should be the most knowlegeable, but the official position of the IDSA (Infectious Disease Society of America, the largest voluntary group for ID docs) is that Lyme is rare, hard to get, and easy to cure, and any symptoms you have after a few weeks of antibiotics is what they call 'post-Lyme syndrome' -- based on the theory that the antibiotics MUST have killed all the Lyme bacteria, and any remaining symptoms are just your immune system over-reacting. So you're not sick, your body is just confused.
I know, this makes zero sense ... but don't be surprised if that's the reaction you get. You may get lucky and get a renegade ID doc, but if you don't, then keep moving.
Lyme specialists (LLMDs), the ones who think bigger thoughts about Lyme disease, can be any kind of doc, from a GP to an immunologist and so on, but seldom are LLMDs also infectious disease docs. They drank the koolaid long ago.
I think someone up above recommended getting a referral to an LLMD from ILADS. The email to the referral function is
contact [at] ILADS [dot] org
Tell them where you live and how far you can travel and they will send you names of docs who belong to ILADS. It's true, as someone said here recently, that not all ILADS members are really broadminded .... and some are pretty quack-y, because Lyme is truly cutting edge and brings out the brilliance in some docs and the strangeness in others. (Personally, I won't buy vitamins from a doc's office, but I imagine there are some docs who do it as a service, thinking to provide high quality supplements. With the availability of vitamins online and elsewhere these days, doesn't seem necessary to me, but .... fwiw.)
I know, this makes zero sense ... but don't be surprised if that's the reaction you get. You may get lucky and get a renegade ID doc, but if you don't, then keep moving.
Lyme specialists (LLMDs), the ones who think bigger thoughts about Lyme disease, can be any kind of doc, from a GP to an immunologist and so on, but seldom are LLMDs also infectious disease docs. They drank the koolaid long ago.
I think someone up above recommended getting a referral to an LLMD from ILADS. The email to the referral function is
contact [at] ILADS [dot] org
Tell them where you live and how far you can travel and they will send you names of docs who belong to ILADS. It's true, as someone said here recently, that not all ILADS members are really broadminded .... and some are pretty quack-y, because Lyme is truly cutting edge and brings out the brilliance in some docs and the strangeness in others. (Personally, I won't buy vitamins from a doc's office, but I imagine there are some docs who do it as a service, thinking to provide high quality supplements. With the availability of vitamins online and elsewhere these days, doesn't seem necessary to me, but .... fwiw.)
Are you taking magnesium (Mg) supplements?
Lyme bacteria use up Mg in the body, and it's a mineral that's often deficient in the American diet anyway. I felt MUCH better on Mg, and I still take it now -- 400mg twice a day.
There are lots of sub-varieties of Mg, and I've read that any one of them ending in "-ate" is the most absorbable in the body: Mg citrate, malate, aspartate, etc. I take a type that include Mg citrate, aspartate and orotate, and I like it.
I have read in several places that the Mg/calcium combos are not as effective as straight Mg. Too much can hurt the kidneys, but I did a little research, and the amount I am taking is nowhere near dangerous.
Made a huge difference in how I felt when I was so ill -- it calms the nerves, stops the twitching, and generally helps the body function. Mg helps cells communicate with each other, so it helps against muscle aches and cramps and is very soothing generally. Like a big glass of warm milk ... and guess what, milk is loaded with magnesium!
Lyme bacteria use up Mg in the body, and it's a mineral that's often deficient in the American diet anyway. I felt MUCH better on Mg, and I still take it now -- 400mg twice a day.
There are lots of sub-varieties of Mg, and I've read that any one of them ending in "-ate" is the most absorbable in the body: Mg citrate, malate, aspartate, etc. I take a type that include Mg citrate, aspartate and orotate, and I like it.
I have read in several places that the Mg/calcium combos are not as effective as straight Mg. Too much can hurt the kidneys, but I did a little research, and the amount I am taking is nowhere near dangerous.
Made a huge difference in how I felt when I was so ill -- it calms the nerves, stops the twitching, and generally helps the body function. Mg helps cells communicate with each other, so it helps against muscle aches and cramps and is very soothing generally. Like a big glass of warm milk ... and guess what, milk is loaded with magnesium!
I think that under the law, docs have to give you copies of your test results. My theory is: I paid for the tests, they are about me, so gimme a copy. A copy of the WHOLE test results, not just one page. Some docs automatically do that, but many don't.
What is a meaningless test to one doc may speak volumes to another doc.
What is a meaningless test to one doc may speak volumes to another doc.
Thankyou soo much for your info! I agree! And yeah my results were sent to Mayo Clinic, and supposedly came back negative but like leilajax said, I'm gonna go request my records so I can take a look and see what the real deal is bc I have been told one too many times that my results were either "negative" or "normal" and then when I looked at my results they were NOT either and completely ABNORMAL. I dont think a 16,000 WBC is "normal" but they said it was the second time it happened. So scary that drs just really dont do their jobs! And we have to do all of this additional work while being in misery! I will check out all of those links! Thankyou so much! I really do feel so alone! It *****! My life has been turned upside down!
Yes when I saw your name I was like "O wow I know her! lol we had ALOT of health issues in common!" lol. I now know the cause of this whole nightmare has been the lyme all along! Drs are serously A holes! I heard "u dont have lyme" from soo many ughh! They made me out to be a "crazy" hypochondriac! And I rememember me and u had the whole swollen lymph node thing in common too! My dr thought I had Leukemia back in 2010 bc my white count was 16,000 and mylymph nodes in every area of my body were so swollen(and STILL are!). Yeah I was told I have an "overactive thyroid" even tho I have all hypo symptoms(thats why we had spoke about Hashimotos). I have been diagnosed with soo many different things! When I tell ppl they just think I must be crazy bc i get a new diagnosis every month it seems! Its horrible that we are already soo damn sick but on top of it we have to actually FIGHT to get treated! I told my dr I had a "upper Respiratory Infection" to get my Biaxin at first! LOL. & that was the truth technically but i just know everytime i take biaxin, after the inital few days i start feeling semi normal! So, HI, my name is Valerie, and I am an antibiotic seeker" LOL (Valerie is my name btw..Riley is my future daughters name lol..I wanted to remain anonymous but now I dont really care..or maybe I should still care..? Bc the govt scares me. I feel like they are gonna target me for speaking about lyme or something..its INSANE! Ok now u guys probably really think im nuts! lol) Anyway, when I went back to my dr I was honest with him and I was like, "dr, I need more antibiotics." He said why your URI not better?" and I actually started tearing up(been REAL emotional lately) and I go "bc they make me feel better". And thats when he referred me to the ID dr(who supposedly deals with lyme), and gave me more antibiotics to get me through until then
I actually live in Northwest Indiana. Idk why I put AZ when I signed up. I lived there for a year when I had my daughter(veru beautiful out west but Indiana is where i was born and raised, and where family is so we moved back. Thankyou for the info! I also spent my whole summers up near Ludington, MI (west michigan along the coast of the lake) and I see on the map it is common there too. My dad deer hunts and would always take us with him, we were also ALWAYS playing out in the woods bc our house was in the middle of the country. I havent really felt well since about age 5. I was always too sick to go to school, always fatigued, lethargic, learning difficulties, but drs said i was "just fine" and all tests came back ok. Then when I was 24(im 26now) I got bit. Possible AGAIN. or maybe for the first time. All i know is i DEF got bit this time. I really do believe I did in childhood too. But now i am so sick i cant take care of my daughter on my own.
Hey there! I recognize you from the thyroid board, right? LOL, bear with me as I have brain fog pretty bad as well!
Welcome! You're very lucky to have gotten abx, so that's great! Well done, you:). I had to get mine through a holistic md, of all people.
I'm trying to remember... Do you have Hashimoto's as well?
As cave said, apparently feeling worse and then better after starting the abx is a good inclination that it's Lyme! I have been on doxy for a month now and it has been, pretty much, the worst month of my life. I don't really feel better at all yet. Maybe because it's just a low dose of doxy, IDK. I, too, came back neg on 2 different rounds of Lyme testing, but I did test pos for IgM P23 ab band. It is a Lyme specific band, though I was told I was neg (the CDC requires that you test pos for multiple bands to get a pos lyme result) it wasn't until I physically got to see the full test results that I had an aha moment. Just bc your doc "says" that you're neg doesn't mean you're neg. Are you able to get a copy of the results to see if you tested pos for any bands?
Nice to see a familiar name here, just wish it was on better terms and you were feeling well!
Welcome! You're very lucky to have gotten abx, so that's great! Well done, you:). I had to get mine through a holistic md, of all people.
I'm trying to remember... Do you have Hashimoto's as well?
As cave said, apparently feeling worse and then better after starting the abx is a good inclination that it's Lyme! I have been on doxy for a month now and it has been, pretty much, the worst month of my life. I don't really feel better at all yet. Maybe because it's just a low dose of doxy, IDK. I, too, came back neg on 2 different rounds of Lyme testing, but I did test pos for IgM P23 ab band. It is a Lyme specific band, though I was told I was neg (the CDC requires that you test pos for multiple bands to get a pos lyme result) it wasn't until I physically got to see the full test results that I had an aha moment. Just bc your doc "says" that you're neg doesn't mean you're neg. Are you able to get a copy of the results to see if you tested pos for any bands?
Nice to see a familiar name here, just wish it was on better terms and you were feeling well!
What you probably experienced is called a herxheimer reaction. That is a worsening of your symptoms because of a die off of the bugs. Too many toxins in your body being released. There are things an LLMD can give you to lessen those herx reactions.
I was misdiagnosed with MS, lupus and a host of other illnesses. The LLMD can determine what you have.
Infectious disease doctors usually do not treat Lyme properly if at all.
You should contact ILADS dot org as stated above and ask for an LLMD in your area. Also go on the site and read up on Lyme.
LLMD use a special lab called igeneX which tests for Lyme more accurately. They can also check for co-infections which more and more lymies are getting along with the Lyme. I have 2 co-infections. If you do have one or more different antibiotics are used. All this makes the illness very complicated.
Most of the time, a real Lyme treatment takes many months or years to get rid of. ID docs generally do not buy the long term treatment.
In addition Lyme can give you heightened depression and/or anxiety.
Hang in there. We are here to help.
I was misdiagnosed with MS, lupus and a host of other illnesses. The LLMD can determine what you have.
Infectious disease doctors usually do not treat Lyme properly if at all.
You should contact ILADS dot org as stated above and ask for an LLMD in your area. Also go on the site and read up on Lyme.
LLMD use a special lab called igeneX which tests for Lyme more accurately. They can also check for co-infections which more and more lymies are getting along with the Lyme. I have 2 co-infections. If you do have one or more different antibiotics are used. All this makes the illness very complicated.
Most of the time, a real Lyme treatment takes many months or years to get rid of. ID docs generally do not buy the long term treatment.
In addition Lyme can give you heightened depression and/or anxiety.
Hang in there. We are here to help.
Forgot to mention that there's a group in AZ called L.E.A.P.
I won't say too much about it----- but I would never recommend that a person get caught up in it. Zipping my mouth now.
I won't say too much about it----- but I would never recommend that a person get caught up in it. Zipping my mouth now.
@ Indigo,
It certainly seems as if you have Lyme, esp. since taking Biaxin just for a little while helped you. (My first abx were Doxy then Biaxin and the Biaxin did help me quite a bit. I was able to start driving again and go to the grocery store by myself.)
But, as I'm sure you'll read here, there's no way any of us can 'guarantee' that you have Lyme (or it's co-infections).
I see you live in AZ and I don't know how that state is about treating Lyme. I do know that New Mexico (it's neighbor) was 'difficult' about Lyme but people can find an llmd there---- maybe.
Go to www.ilads.org and ask for a referral. Be wary though, even some ILADS trained docs aren't what we were used to seeing in years past. Some very 'strange' protocols are offered by some who can rightfully claim ILADS membership now. But I think you could recognize them in a heartbeat if you read their web sites. (grin)
Here is a link to a site that gives you four choices for finding a doctor in your area.
http://mylymediseasetreatment.com/lyme-disease-general/how-to-find-a-lyme-literate-doctor-llmd-in-your-area/
A support group in AZ might be a source. But I happen to know that AZ has more than it's share of, um, practitioners that say they know about Lyme and can treat it. So, again, be wary.
http://health.groups.yahoo.com/group/ArizonaLyme/
All of your symptoms sound so much what I had in the beginning. I empathize with you completely and hope you can get some solid information about who to see in AZ. Keep us posted, ok?
Until you can find an LLMD (a patient-conferred acronym for a doctor who knows about Lyme) you will be bounced around the IDSA, CDC merry-go-round and never receive the proper tx. (Always assuming that you do have Lyme.)
Mayo Clinic is dedicated to not testing or treating Lyme disease properly. They never have been and the IDSA guidelines for "hard to get, easy to cure' are their bible.
It certainly seems as if you have Lyme, esp. since taking Biaxin just for a little while helped you. (My first abx were Doxy then Biaxin and the Biaxin did help me quite a bit. I was able to start driving again and go to the grocery store by myself.)
But, as I'm sure you'll read here, there's no way any of us can 'guarantee' that you have Lyme (or it's co-infections).
I see you live in AZ and I don't know how that state is about treating Lyme. I do know that New Mexico (it's neighbor) was 'difficult' about Lyme but people can find an llmd there---- maybe.
Go to www.ilads.org and ask for a referral. Be wary though, even some ILADS trained docs aren't what we were used to seeing in years past. Some very 'strange' protocols are offered by some who can rightfully claim ILADS membership now. But I think you could recognize them in a heartbeat if you read their web sites. (grin)
Here is a link to a site that gives you four choices for finding a doctor in your area.
http://mylymediseasetreatment.com/lyme-disease-general/how-to-find-a-lyme-literate-doctor-llmd-in-your-area/
A support group in AZ might be a source. But I happen to know that AZ has more than it's share of, um, practitioners that say they know about Lyme and can treat it. So, again, be wary.
http://health.groups.yahoo.com/group/ArizonaLyme/
All of your symptoms sound so much what I had in the beginning. I empathize with you completely and hope you can get some solid information about who to see in AZ. Keep us posted, ok?
Until you can find an LLMD (a patient-conferred acronym for a doctor who knows about Lyme) you will be bounced around the IDSA, CDC merry-go-round and never receive the proper tx. (Always assuming that you do have Lyme.)
Mayo Clinic is dedicated to not testing or treating Lyme disease properly. They never have been and the IDSA guidelines for "hard to get, easy to cure' are their bible.
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