I am glad to have this forum as I have read a lot about it in the past and I am hoping to get some support from it.
I might not be dying, I just FEEL like I am dying for sure. I have been through hell since about late feb. early march, as I'm sure everyone else on here has. I have thought I've had everything from heart attack, to costochondritis, to blood clots, to asthma, to ALS to diabetes and onwards.
Finally after a battery of blood tests (50 to be exact) came back normal, i suggested for my GP to test for lymes. He did indeed and sure enough my first test (not sure of which one it was) came back positive for lyme. I guess he said the normal level was 109 somethings and mine came back 155. He said that my infection was in between stage 1 and 2 and that it was either 2 to 3 months old or 3 to 5 months old.
He started me that day (two weeks ago this monday) on doxycycline.
Was having muscle pains, Chest pains (extreme and where it started) irregular heartbeat, foot cramping in the arch, hand cramping, extreme anxiety and panic attacks, flu like feelings, swollen glands, dizziness, etc.
After a few days on the antibiotics my muscles seemed to ache less and my foot arch cramping reduced. The irregular heartbeat (skipped beats) is much much better. HOWEVER, the last few days like the last 3 to 4 days I've felt that I was absolutely dying, the foot arch cramping has returned. The dizziness is back and when I try to walk at my job or do anything but sit at the computer I feel awful. my skin feels hot. Going out in the 85-90 degree heat is really awful on me I can barely take it. Also when I stand up to get off the couch go to the bathroom and pee my heart rate really gets pounding. I need constant air conditioning.
I realize what herxing is. Could this be some herxing? I am scared that I'm not going to get better. I am afraid that I'm dying and that I'll be the rare lyme case who doesn't recover.
My fiance is very insensitive, she had lymes and got over it after 2 or 3 weeks of antibiotics. I no longer live a normal life and its taking its toll on her, she's really had enough and wants me to be young, fun, etc. but I feel so awful. She thinks I'm sensationalizing the symptoms.
My doc and my mother tell me that I need to just give it more time, take the oral antibiotics another 2 weeks.
Anyone with any thoughts I'd appreciate it, but I really wanna hear i'm going to be okay and what you think of my situation in detail.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I have a few suggestions for you. First, as everyone here will say, see an LLMD if you are not already seeing one. (Look at "Finding a Doctor" on this website)
Some of your symptoms, while they could be due to Lyme, sound like symptoms of some of Lyme's "coinfections," which would require special treatment.
Trust me, if you have these, you want to know now. The heart palps COULD be symptoms of babesia, and the arch of the foot pain could be a symptom of bartonella.
I was treated for Lyme unsuccessfully for quite some time, and did not make progress until my LLMD began treating "coinfections."
Granted, I had been sick MUCH longer than you before being treated, but you need to look into these other infections now while there is still time and the disease is still fairly early.
I think you will be okay if you seek proper treatment immediately. You have started responding to the Doxy and that is good, but your symptoms may have returned because of Bartonella acting up (for example).
If you can't get into an LLMD soon, you may want to order some bloodwork to test for coinfections now, with the help of the doctor you are seeing now. Order a kit from Igenex (they have a website), then your doc will have to write the order for the blood to be drawn. Maybe you can call Igenex if the forms are too confusing for you.
I hesitate to say this though, because an LLMD may have certain tests he/she wants to order, and if any of them come back positive, you will want the LLMD to treat you for them, not some random doctor.
But I thought, since your disease is in early stages, it might buy you some time from having to wait for those results after you get into an LLMD.
Infectious disease doctors do not take Lyme very seriously, so I would avoid that at all costs...you don't want to relapse later because you didn't eradicate everything fully.
What you are going through is normal for Lyme. (and other tick infections)
I believe you will be okay if you take care of things. Whatever you do, do not allow for a "lapse" in your Doxycycline.....I hope others on this website will give you advice on how much to take and for how long, but I don't think two weeks is enough.
And you don't want to stop-start it. So start working on that now maybe?
As far as your fiance, that is hard. Don't let anyone persuade you what you are going through is not serious, because it is.
I have two cousins who got Lyme, got antibiotics RIGHT away (as in, same day), and were fine in a couple weeks, but they totally understand what I am going through, because they know I wasn't fortunate enough to get prompt treatment like they were.
People have to realize that you are not dealing with that early kind of Lyme right now, because the infection was allowed to get into every nook and cranny of your body and go wild for weeks before you started your meds.
Tell your fiance that this is a totally different ballgame at this point. If you get diagnosed with coinfections, that will also maybe show you have a "lot" going on infectiously. Either way, it is serious.
That said, many people get better with proper treatment, so see an LLMD (lyme literate MD) soon so you can be on your feet again!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
PS---look at this, and maybe bring it to your doctor....
Keep in mind, even Igenex will show false negatives, so sometimes you need to go on symptoms)
And, yes, while you are seeking a proper doctor, stay on that Doxy! Also, I see you are in Ohio....you will probably have to travel to see a good Dr. as there are not many in the Midwest. It is worth it though. I travel.
Posts: 4590 | From Midwest | Registered: Jun 2008
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
I would first find an LLMD (lyme literate MD) which you can do by posting on "seeking a doctor".
An LLMD may test you for co-infections and will be able to make a clinical diagnosis and treat them.
Your symptoms sound much like mine in the beginning. Many days I felt like I was dying. I did not and I am doing much, much better.
How much doxy are you on and for how long?
LD can be very lonely. Many friends and family members just don't understand how you feel because you may look just fine.
You can only be fun and your old self when you improve and they need to understand that.
Hang in there - this is a great place to come to for support and with questions.
Posts: 1129 | From Maine | Registered: Feb 2008
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posted
I have been on Doxy for almost two weeks, monday will be 2 weeks. Have a refill on the prescription and will get 2 more weeks of it.
If at that time I am not better, then my GP says he is going to send me to the top infectious disease specialist in Columbus, and that he will probably do a spinal and give me IV antibiotics. My GP said he wants to avoid steroids if he can and seems to think the doxy will take care of it.
I asked my doctor who is an aggressive GP who usually gets to the bottom of things, about coinfections. He acted like it wasn't a possibility and kind of said 'like what?'.
A LLMD I don't even know what that is and traveling is honestly out of the question for several reasons, financially and I am in no shape to travel out of state.
I think you're going to be okay. You caught it early. Question, though, how is your doctor able to tell how long you've had lyme and what stage you're in? What lyme test was done that was 109 or 155? I've never heard of numbers like that with a lyme test? Was it a western blot or Elisa?
Posts: 63 | From Humboldt County | Registered: Jul 2008
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posted
Hoosiers you're acting like I'm in grave danger, although I feel very poorly I was under the impression that we're not operating on a normally life threatening condition. You stated several times that you think I'll be ok. I mean, I shuold live no matter what, right? Just a matter of when I feel normal again?
I hope I am going to be ok. No one is treating me like it's life threatening, including my doc. I am not sure what test it was or anything like that; but I know the GP secretary told me that based on that normal 109 and that 155 level that I had tested at, it looked to be an old infection then they re-tested me to see how old the infection actually was.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
No, Clint.....you aren't going to die. You're being treated and that's great! And I'm glad your GP is so supportive.
Didn't mean to scare you. I am just giving you all the info so there will not be any "holes" in your recovery.
Yes, I said recovery.
You are herxing right now, and that is normal. Your body is killing bugs, and as the bugs die, they create toxins and those toxins make you feel sick. I can't say for certain, because I'm not a doctor, but that is what I would assume.
Once again, didn't mean to scare you. I hope other people will chime in with their opinions here. I know knowing you have Lyme is probably overwhelming, so thinking you could have gotten other infections from the same tick is daunting. Chances are you'll be fine, but if you could cover all your bases now, why wouldn't you?
My only point was that be sure that if you have coinfection, you will know, so they can be treated while you are treating your Lyme.
If you had a tumor, and there was a 10% chance it was cancerous, wouldn't you get a biopsy? Coinfections are treatable, but you want to know if you have them....because if you don't treat them you will just get sicker.
Like the tumor example, it might be fine, but if you catch this stuff early, you are better off, so just find out to be sure.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Clint, four weeks of doxy will not be enough if you are this sick. It just isn't.
You really will have no choice about traveling just as I didn't. I'm in Cincinnati and see one of the top Lyme specialists in the country .... in NY.
The infectious disease doctors got investigated recently for anti-trust violations. It seems that most of the panel of members who wrote their Lyme treatment guidelines, which is where your doctor is getting the 4 weeks from, were being paid by insurance companies. You can see why insurance companies would not want long term treatment to be the norm. They have to rewrite their guidelines, but in the interim, you will not be able to get adequate treatment down the street.
You may not die from this, but you will get worse without proper treatment. I was bedridden by the time I got a proper diagnosis and started treatment.
My husband took me to NY .... I could hardly walk at the time and really have no idea how he got me there and back ... by the grace of God I guess.
Sorry to be so dire, but this is the truth. You can waste time and money with the infectious disease doctor, but you will not get well. Go straight to an LLMD.
BTW, they cannot tell how old an infection is by testing.
I'm feeling much better .... about 90% of normal .... but I still, after 18 months of treatment, have about 5 days per month where I do nothing but lie around the house.
Lyme is serious, but you can get better with proper treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Going to NY is not a realistic option. It just isn't. I'd probably lose my home.
If I need more antibiotics, my doc will give them to me after 4 weeks, either by oral or by IV if needed. He just wanted me to get the 4 weeks of antibiotics then see how I was doing.
Isn't it possible that you had the disease longer than I did therefore you were sicker?
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Clint, it's great that you have a supportive primary care physician. My treatment has been with an Lyme-experienced family practice doc, plus a lot of input from me, to which he is open. If he's willing to go the IV route that's a really good sign although perhaps not the best course.
I have no doubt that you can recover. As one who went indiagnosed for twelve years and was developing dementia, among many other things, I am generally symptom free with occasional mild Lyme days. For example, on Thursday I was doing word substitutions all day. This is a fairly common symptom; you mean one thing and use another word that starts with the same letter. Instead of black olives, I asked for black onions.
However, if you can't get to an LLMD, you are really going to have to get very informed and tactfully assertive. Read the ILADS treatment guidelines on this site. Avoid infectious disease docs like the plague. Search old threads for what has worked for people.
Not to start an argument, but in my case the issue of co-infections has not been explored beyond a negative report on Babesia. All my treatment has been Lyme directed. Some of my symptoms, such as air hunger and night sweats are commonly considered to be Babesia symptoms. But they are gone. I had foot cramping/arching, commonly ascribed to Baronella. Gone.
My doctor says that there really are no experts in this, due to the fact that the research has been corrupted by selfish agendas. He says we are all, basically, flying blind. Hence he has been willing to try almost anything I proposed with information to back it up.
This is not to discourage you from going to an LLMD. Perhaps ther are resources you are reluctant to tap, such as family. What you are dealing with is not trivial. It is very rarely, but sometimes, fatal. This is not to freak you out. This is to kick your butt!
We all can only do what is possible, although sometimes we fail to see or appreciate posssibilites. Maybe you can get to an LLMD. But if you really can't, you cannot safely assume that someone else is going to figure this out. You have to figure it out. There is a lot of information on this site, along with a lot of conflicting recommendations. So, you are at the right place to start. Start reading.
Oh, I agree that a month of Doxy is unlikely to give you any lasting improvement. You are going to need a much more aggressive strategy. I won't go on further and bore everyone but feel free to PM, if you wish. Hang tough, guy!
Also, you are almost certainly herxing.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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quote:Originally posted by David95928: Clint, it's great that you have a supportive primary care physician. My treatment has been with an Lyme-experienced family practice doc, plus a lot of input from me, to which he is open. If he's willing to go the IV route that's a really good sign although perhaps not the best course.
I have no doubt that you can recover. As one who went indiagnosed for twelve years and was developing dementia, among many other things, I am generally symptom free with occasional mild Lyme days. For example, on Thursday I was doing word substitutions all day. This is a fairly common symptom; you mean one thing and use another word that starts with the same letter. Instead of black olives, I asked for black onions.
However, if you can't get to an LLMD, you are really going to have to get very informed and tactfully assertive. Read the ILADS treatment guidelines on this site. Avoid infectious disease docs like the plague. Search old threads for what has worked for people.
Not to start an argument, but in my case the issue of co-infections has not been explored beyond a negative report on Babesia. All my treatment has been Lyme directed. Some of my symptoms, such as air hunger and night sweats are commonly considered to be Babesia symptoms. But they are gone. I had foot cramping/arching, commonly ascribed to Baronella. Gone.
My doctor says that there really are no experts in this, due to the fact that the research has been corrupted by selfish agendas. He says we are all, basically, flying blind. Hence he has been willing to try almost anything I proposed with information to back it up.
This is not to discourage you from going to an LLMD. Perhaps ther are resources you are reluctant to tap, such as family. What you are dealing with is not trivial. It is very rarely, but sometimes, fatal. This is not to freak you out. This is to kick your butt!
We all can only do what is possible, although sometimes we fail to see or appreciate posssibilites. Maybe you can get to an LLMD. But if you really can't, you cannot safely assume that someone else is going to figure this out. You have to figure it out. There is a lot of information on this site, along with a lot of conflicting recommendations. So, you are at the right place to start. Start reading.
Oh, I agree that a month of Doxy is unlikely to give you any lasting improvement. You are going to need a much more aggressive strategy. I won't go on further and bore everyone but feel free to PM, if you wish. Hang tough, guy!
Also, you are almost certainly herxing.
David,
What other course of action is there other than IV or the Oral antibiotics?
My GP will give me whatever treatment that I need as far as aggressive antibiotics go, etc. I just don't know what that best treatment is.
If I am herxing, I should be getting better eventually, and it means in effect the antibiotics are working, right?
I wasn't sick that long. The infection was from 2 to 5 months old. That is catching it fairly early, so that is encouraging, right?
Like I said, I do feel awful. My skin is flushed and hot and my eyes feel like they're burning. The foot arch, hand cramping and some flu-like chills and muscle aches are there and i don't wanna get off the couch, along with a headache. I am hoping this is a herx and i turn around here soon.
NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Clint31 - everyone here is trying to steer you in the right direction.
Infectious disease doctors - as said- stay away from them.
When I first got sick, never in a million years did I think I would have to travel to see a doctor, I couldn't even let it in. Never thought I would get THAT sick. I understand how you feel.
Almost everyone ends up having to travel a bit and some a very long way to see an LLMD.
I am fortunate to have a good one nearby but my PCP still doesn't even believe I have Lyme despite all my positive tests!
I can tell you for sure I would be traveling to see one if I had to.
You just have to be really careful to see someone who really knows this disease. This is your health and at the end of the day there are many who have given up a lot financially to get well.
If you decide to stick with your doctor - like the other folks have said, make sure you are well informed.
This is your window of opportunity if you caught it early.
I too, have never heard of any tests with those kinds of numbers.
Posts: 1129 | From Maine | Registered: Feb 2008
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First off, if your infection is 3-5 months old, it was caught pretty early compared to most people here...and you're not going to die with proper care.
As far as the IV therapy, I'd get a few opinions on this from different LLMD's if possible? I am on IV antibiotics (for presumably an infection that might be up to 10 years old!). At this point I am wishing I tried all orals first but LLMD suggested against it. IV might be right for me eventually and might be right for you now, but think this one out!
It is VERY good you're getting the doxycycline, anything is better than nothing! I can so very much relate to many of your symptoms, they are not uncommon, and it seems they do get better!
Keep asking any questions, many well-meaning people here, but most importantly, seek out the best MDs within a reasonable distance that understand Lyme and the other co-infections people often have.
Regards, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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posted
So if I'm just herxing, it is working (the Doxy treatment), and I might not need further treatment. This isn't something I've had for years. Maybe the herx is making me feel bad.... I thought herxing was a good thing, no?
Why is it so unreasonable to think that I need further treatment than a month of doxy? I haven't had the infection for a long time.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Clint,
You asked, "what other courses of action would be taken besides oral or IV antibiotics?"
The reason people will urge you to get tested for coinfections is that different infections respond to different drugs.
For example, for early Lyme, Doxy may be the appropriate treatment. Many people will be alright with just that (some of those people get better and aren't on this site!)
But, if you come up positive for babesia, (your heart palpitations suggest this), you need something like Mepron or Malarone. Never in a million years would your GP or Infectious Disease doctor prescribe these to you, because they are not anti-biotics and thus do not kill Lyme, they kill babesia, which is a parasite that lives in your red blood cells, similar to malaria.
Gross, I know....but there is at least a 10% chance you contracted it with your Lyme.
So, you can IV all you want, but your babesia is going nowhere.
If you come up positive for Bartonella, there are studies that suggest Zithromax is a good way to knock it out early (not saying this is the best way, but I bring it up because it is one way). Also, Rifampin and Levaquin are good for this infection.
It doesn't seem like Zithromax has been brought up for you, and I am sure your ID wouldn't dream of using something like Levaquin just for Lyme.
The point is, different infections respond to different medicines or antibiotics (in the case of Bartonella).
Even if you don't travel to see any LLMDs, you need to at least know if you have other infections or not. I hope you don't, but if you do, THEY REQUIRE DIFFERENT DRUGS.
An LLMD has the expertise, in the case of multiple infections, to combine medicines to best help you feel better.
I am hoping none of the info I just gave you will apply to you, but like I said earlier, it is better to be safe than sorry.
Posts: 4590 | From Midwest | Registered: Jun 2008
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There is a MAJOR controversy regarding how long a Lyme infection should be treated. I won't go into that, but if you're interested research ILADS vs. IDSA Lyme treatment protocols.
I will say, as someone struggling with many of the symptoms you mention AND others (some that are extremely painful), I would at the very least be treated until you have been symptom-free for 2 months - this is a well accepted approach.
Again, you may only ever need oral abx.
Herxing, I suppose it is a good thing? Even with an old infection and having had IV + oral meds for the last 6 weeks, I have had only MINIMAL 'herxing' if it even is that? Sometimes if just might be a reaction to the drugs.
However, many consider herxing either an intensification of current symptoms or the addition of new ones. In my case, both oral meds I take make my worst sx (nerve pain AND heat intolerance MUCH worse). I think you had a similar heat experience?
Feel free to ask any questions...again, not a substitute for medical advice but good anedoctal responses from those living with this, and yes, many do get better, just need to the right ABX for the right duration.
Take Care, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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posted
Isn't it possible that I'm just herxing and that I'll begin to feel better after I am finished herxing and the antibiotics will do enough to cure what has been a relatively short term span of the disease compared to most?
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, it is possible. I wouldn't say it is "likely", but it's definitely not unlikely.
All I am saying is that you want to be sure. How much Doxy are you taking? I believe the best dose is 200mg twice a day.
All I am saying is that there is a CHANCE you won't get better, and you need to investigate that possibility for your own peace of mind. Did you see my tumor example up there?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Good question, one I wish I could answer with certainty. Yes, it would be a good sign if you do feel good or normal after stopping the doxy...say after 4 weeks total treatment.
Again, to err on the side of caution, you really need to be monitored by a LLMD.
You have many things in your favor hear, presumably recent infection, fairly quick treatment etc.
Just treat as long as you and a Lyme-qualified doctor feel is necessary and then when you STOP treatment, be extremely watchful of the sx's, if they come back, may require more abx, but that may never happen. Many do 'Cure' this when caught early and this is what is at the heart of the treatment controversy.
Take Care, MBB3
Posts: 247 | From The Country | Registered: Oct 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Clint, to start with the present, many of us have gotten a good bit of relief from herx symptoms by drinking "Detox Tea" made by Yogi Tea Company and sold at your nearby health food store. It won't make it all go away but it helps some and is worth a try. Don't be fooled and buy "Peach Detox Tea." It's not the same thing.
Onward. As far as a right course of action goes, the totally frustrating thing is that no one really knows. There still are not well established protocols, other than the sham one preferred by the infectious disease docs. That's why you need to do your own research.
In my case, joining this board over five years ago, there was a lot of talk about the necessity of going on IV Rocephin. There was an equal amount of talk about rapid relapse after going off Rocephin. There was also a good bit of talk about infected IVs. No IV Rocephin for me. It can give the Lyme a good solid smack but something else must follow it or relaps is almost inevitable. Your lifestyle and what you can sustain also is critical. For example, the idea of having to live around keeping an IV clean and dry is incogrunet with liking to swim, work-out, do outside projects and vigorous outside activities.
When I joined the board, using Bicillin LA was still fairly new and unusual. But in researching people's reports, it seemed like the majority of the people who took it had pretty stable recoveries. Now, this involves getting a shot in the butt several times a week. Some people are really put off by this. It didn't worry me. So, it was something I kept researching and thinking about.
My doctor and I discussed this. I brought in supportive conference proceeding. So he started me on Zithromax for a couple of months, to burn off some of the bugs. Then we gradually added Bicillin. In our case we followed a protocol then being used by Dr. B and his P.A. Jerry. It was one shot a week for four doses. Then one every six days for four doses. Then one every five days for four doses. We did did this until we reached three times a week. The we switched from Zithromax to Biaxin, which I had come to learn Dr. B preferred.
The first two months on Zithromax alone were hell. I was sweating and shaking from chills simultaneously. I wrote at the time that the only part of my body that didn't hurt was my hair! After it settled down, adding the Bicillin was not as dramatic, as far as herxing. But it took several month to reach this moment when, walking across my campus workplace, I realized that, at that moment, nothing hurt. It had been years and didn't last but as time went on, I felt better more of the time and crappy less of the time. It took about a year and a half to be comfortable most of the time.
Bear in mind that I had gone undiagnosed and untreated for twelve years. My doctor said this was like going untreated for syphillis for twelve years, except worse. At the time, it was my idea that it would be long but I would be cured. Eventually my doctor told me that, in his experience, people who have had it a long time rarely go off of antibiotics without relapsing. I asked how long a "long time" was and he responded: One year. That did it for me. I have a career and home responsibilities.
So here I am, over five years in, still on Bicillin and Biaxin. They have become a sometimes inconvenient but stable part of my life. I can deal with this because normal life has been restored to me and I don't care to risk losing it by going off antibiotics or changing what is continuing to work.
Having only been ill a few months, it seems likely to me that you can be cured and be done. I've written this long missive to try to explain how my decision-making process went and can't say what's best for you. Good luck in this. One caution I will offer is, once you pick a path give it long enough to work. I've seen a lot of people go from one thing to another with frustrating results. In my opinion, Bicillin is a slow process and not for the impatient or faint-hearted. But, five years later, I remain convinced that it is one of the more reliable tools we have.
Enough!
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Clint, I can totally relate. I had those crazy heart symptoms too which can be the scariest of them all.
I had what can be described as pericarditis symptoms...tightness and strange pains for weeks at a time. I've also had irregular beats at times.
I too thought I was a goner a good few times.
However, a cardiologist could not find anything wrong. Echo was normal. My pulse tends to be low at times mid 50s...
But I've read somewhere online that Lyme around the heart can produce vegetations--their word--that may be too small to be picked up on an Echo.
These symptoms disappeared though but seem to come back every so often.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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If at that time I am not better, then my GP says he is going to send me to the top infectious disease specialist in Columbus, and that he will probably do a spinal and give me IV antibiotics. My GP said he wants to avoid steroids if he can and seems to think the doxy will take care of it.
OMG! Dont' let him give you steroids! That will make the Lyme go deeper!! I also would NEVER submit to a spinal tap for a lyme diagnosis!
Not unless my life were in immediate danger would I submit to that.
There's a 20% chance that Lyme would show up on the spinal. Not good enough for me!
Clint... you aren't in grave danger of dying.. you're in grave danger of becoming chronic unless you find a dr who knows how to treat lyme.
Your dr has already admitted to knowing nothing about coinfections and it's obvious to us that he knows little about Lyme.
Put yourself in good hands and you'll be able to recover.
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I understand where you are coming from. I'm young like you. I'm only 24 years old. Was bit by a tick when I was around 14, though didn't get full-on sick until just last year. I've been sick for a year. I'm better than I was, definitely, but I'm still not 100%, no way.
I know you want and hope that just so many days of Doxy will cure you, but it usually does not work that way unless the person is bit right then and sees the tick and bite, and is not having any or very little symptoms at that time, and gets antibiotics shortly after.
I know your doctor told you that the results said you were bitten recently, but an ELISA does not give that type of information. The Western Blot though it does have IgG (later infection) and IgM (recent infection) does not always reflect that either. With the symptoms you are having, they seem likely late stage. Not to scare you.
I'm sorry your girlfriend is having a hard time accepting your illness because she also had lyme but was one of the lucky ones who got treated right away (and probably bit right then too) and got well. Many people here have a hard time with their significant others because they don't understand or, sadly, don't care. It just angers me to hear that she is so inconsiderate to you at this time. I'm very lucky and beyond thankful to have a wonderful husband who understands and takes care of me no matter what.
I'm going to also suggest you see a Lyme Literate doctor (LLMD). If you're serious about getting better, it's the only way to go really. Other doctors have very little knowledge about lyme and usually NO knowledge whatsoever when it comes to co-infections. You probably have co-infections as most people with lyme also have one or two co-infections as well. Foot cramping in the arch and pain sounds like Bartonella, for example.
Most the symptoms you describe are symptoms I have/had.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:Originally posted by Clint31: It was the Western Blot test that I had and my IGG and IGe indicated the amount of time of the infection.... now I remember.
Yes, and the time you were bitten does not always reflect in that.
NOTHING with lyme is cut and dry like that at all, not even the testing, sadly.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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quote:Originally posted by Clint31: It was the Western Blot test that I had and my IGG and IGe indicated the amount of time of the infection.... now I remember.
Yes, and the time you were bitten does not always reflect in that.
NOTHING with lyme is cut and dry like that at all, not even the testing, sadly.
I get what you're saying, but my doc has been practicing for 25-30 years. Shouldn't I trust him? I mean I haven't been sick for that long....
posted
oh a side note, good thing you are finding out now how unsupportive your fiance can be before she becomes your wife. through good times and bad, sickness and in health....
really though, that's great you are getting treatment! sorry you are going through this..it will get better soon. keep your head up:)
Posts: 31 | From maryland | Registered: Oct 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
quote:I get what you're saying, but my doc has been practicing for 25-30 years. Shouldn't I trust him? I mean I haven't been sick for that long....
Like we've been trying to tell you here, he's not lyme literate, an LLMD. If you want to trust him, a doctor that goes by the CDC guidelines, who think that 3 to 4 weeks of abx are all you need even though there are millions of us still sick after that treatment, that's your prerogative. But I wouldn't trust my life in his hands, especially a doctor that does not even know what co-infections are.
PLUS, it's been seen time and time again that the Western Blot can not show exactly when a person was bit. Sometimes a person was bit when they were a child and will have a positive IgM (recent infection) 20 years later.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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bettyg
Unregistered
posted
clint, welcome and so GLAD you found us!
clint, you are in DENIAL; which we were all were at one time. so it's time to accept YOU HAVE LYME DISEASE, and you have ONE MAJOR CHANCE of being IN REMISSION in the future IF YOUR LISTEN TO US; THOSE EXPEREICNED FOR DECADES. **********************************
clint, i don't pull any punches; i don't sugar coat anything. the more YOU know to educate yourself; YOU WILL MAKE BETTER DECISIONS for your health ok!
if it will make you feel better, please PRIVATE MESSAGE ME, THE TWO PEOPLE STANDING TOGETHER, and send me a note with YOUR drs. info:
his full name, city/state ... i will check my nationwide LLMD, LYME LITERATE md, list to see IF THEY ARE ON THERE OR NOT!!! **************************
last repeat, we want you to get better; infectious drs. are NOT GOING TO MAKE YOU BETTER! all reasons given above.
i see you posted in seeking dr. too...GOOD DEAL; we'll help you over there.
clin, well done my new friend on posting and breaking up your text so we neuros can help you ok!
below my signature line is my newbie package just posted online here; please check it out as the first 40-44 pages are the TABLE OF CONTENTS WITH NO PAGE NUMBERS OF EVERYTHING IN THERE OK!!! ***************************
it's time to read, read, and read; member TREEPATROL also has in medical a newbie archive of over 1000 links of GOOD LYME INFO! SO CHECK THEM OUT.
*********************
also, please delete BOLD CODES for quoting members on the bottom of your thread; thx
i have SUPER SENSITIVE eyes from lyme; bold PAINS by eyes so much so i have a big favor to ask:
do one of the things below ok on editing your post where you quoted her...
1. most of time you do NOT need to quote someone, just type their name, and give your comments.
2. if you need person you are replying to in your box and can not use arrows to go up/down to read their post, then use '''' QUOTE BUT PLEASE DO THIS.
when you use "", second line has these 4 codes: [QB] delete these 4 characters and BOLD IS GONE! ************************************************
thanks so much! others have problems too but i am the MOST VOCAL since i spend 6-8 hours daily split up into 2 time areas.... betty xox
so please clint; go back up to where you quoted folks and DELETE BOLD CODES shown above; leaves text in normal color NOT bold and painful for my lyme eyes!
click PENCIL on every post where you quoted folks and delete the first 4 bold codes AT BEGINNING OF SECOND LINE! FANTASTIC.
thank you; please file these notes for future reference~!
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NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
Clint - I totally trust my PCP when it comes to some things. Ear infection maybe or something mainstream.
I said earlier in this thread that she doesn't beleive I have Lyme. She's seen all my tests, she also doesn't believe I have heavy metals and she's seen all my test results for that too.
You know and trust your PCP and it's good to have them on your side. This does not mean they know how to treat Lyme or how to look for or treat co-infections.
It is like going to see dermatologist and expecting them to be able to diagnose and treat a heart condition. They might know a little bit about the heart because they went through medical school but....... do you hear what everyone is trying to tell you?
We want you to be well just as you do. See someone who specializes in this so you don't end up still writing on this site in 10 years.
Keep us posted Posts: 1129 | From Maine | Registered: Feb 2008
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posted
Clint, your best bet is to read the Dr. B guidelines for diagnosis and treatment at www.ilads.org.
He is the expert on Lyme Disease. The standard treatment for LLMD's is two months past the last symptom. So, one month of doxy does not fit what the ILADS says you need.
Trust me, I have six kids, two in college, I am NOT happy about traveling to see my LLMD. IF your PCP will treat you appropriately, go for it.
We are all just trying to help you .... our experience is that what you are doing will just get you to where we all are - sicker. It seems you only want our experience if it fits what you want to do. IF your PCP will follow ILADS guidelines, that is the ONLY way I would stick with your current plan.
There are people on this board who were treated right after their bite and who are sicker than me, so length of time being sick sometimes is irrelevant with this disease. You have it systemically as your symptoms show. It might not take you as long as me to get rid of, but it more than likely will take longer than four weeks.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by sixgoofykids: Clint, your best bet is to read the Dr. B guidelines for diagnosis and treatment at www.ilads.org.
He is the expert on Lyme Disease. The standard treatment for LLMD's is two months past the last symptom. So, one month of doxy does not fit what the ILADS says you need.
Trust me, I have six kids, two in college, I am NOT happy about traveling to see my LLMD. IF your PCP will treat you appropriately, go for it.
We are all just trying to help you .... our experience is that what you are doing will just get you to where we all are - sicker. It seems you only want our experience if it fits what you want to do. IF your PCP will follow ILADS guidelines, that is the ONLY way I would stick with your current plan.
There are people on this board who were treated right after their bite and who are sicker than me, so length of time being sick sometimes is irrelevant with this disease. You have it systemically as your symptoms show. It might not take you as long as me to get rid of, but it more than likely will take longer than four weeks.
I can probably get my GP to give me another month or so on antibiotics if that is what I want to do. He would understand that and probably write me a scrip for another month of doxy
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
clint, i went to an infectious doc. one of the best here in fort worth. after wasting over six months, i was told "well i never thought you had lyme anyway."
when i finally got to a LLMD and told him about the infec doc he replied, "well that's a big black hole."
and he certainly was right!!!
please listen to those on the board here. we only have your best interest at heart. and we won' steer you wrong.
i love my pcp and go to him for everything BUT lyme...
if there is any humanly way to get to a llmd, please go...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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quote:Originally posted by randibear: clint, i went to an infectious doc. one of the best here in fort worth. after wasting over six months, i was told "well i never thought you had lyme anyway."
when i finally got to a LLMD and told him about the infec doc he replied, "well that's a big black hole."
and he certainly was right!!!
please listen to those on the board here. we only have your best interest at heart. and we won' steer you wrong.
i love my pcp and go to him for everything BUT lyme...
if there is any humanly way to get to a llmd, please go...
I've decided my course of action is to give the antibiotics (doxy) another 2 weeks and see where I'm at. I feel much better overall today as the herx has seemed to go down from yesterday. If I don't feel better after the doxy, I will probably see an LLMD and get tested by IGENEX for coinfections.
quote:Originally posted by Clint31: I can probably get my GP to give me another month or so on antibiotics if that is what I want to do. He would understand that and probably write me a scrip for another month of doxy
Like I said, you REALLY, REALLY need to read Dr. B's guidelines so you understand this disease better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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