Aa
new here to share my very long Lymes story
I discovered a deer tick stuck on my thigh while in the shower on June 29th. I quickly jumped out of the shower, pulled it out, put witch hazel and alcohol on the wound, and put the tick in a baggy. The tick was not engorged and it seemed I got the head as well. As I watched his little body wiggle in the bag, I wondered if he was the bad kind of deer tick I always heard about. This was a tick in nymph stage and the size of a poppy seed once it died in the bag.
Instead of going immediately to the dr. the next day I thought I would watch the area. My first mistake. I watched the area each day and it remained the size of a dime. I thought maybe it would take a while to heal since I am hypothyroid and things work slower with thyroid problems. Ten days later I left for a golf vacation to Illinois . That night I noticed that the dime size area was expanding to an elongated red mark. Did I come home...no...I just got there and wanted to play golf with friends. The next evening after golf and showering I felt warm and then cold a little stiff in the neck....thought maybe golf related... but still didn't want to come home. The following morning I woke up and was stiff in the hip and had a headache. I knew I had to come home and go right to the e.r. since it was the weekend. Upon stopping for fuel and going inside to pay for my fuel I had to walk a lot slower due to hip discomfort. I arrived home, grabbed the tick in the baggy and headed to the e.r. Upon arriving at the e.r. my temp. was 99.8. and bp was 145/82....I usually have bp of 120/75. When the dr. came in I was horrified to see it was a dr. that has misdiagnosed so many in our area that have Lymes. I was ready to get up and walk out and go elsewhere, but I thought I would hear her out first. She tells me she didn't think it was Lymes just a reaction to the way I pulled it out. I told her that my dime size wound expanded and I had all the symptoms, etc. Finally she said she would give me a two week supply of doxy but not a blood test. I was happy that she was willing to give me the doxy 100 mg twice a day. Took the first pill that afternoon and by evening had a temp of 102.6, and hip still hurt. Woke up during the night soaked and had to change pj's. Had a temp of 101.8. Next day temps were up and down but hip didn't hurt nearly as much. Day and a half later was feeling like nothing happened...go figure? I continued my daily routine of yoga and zumba without any glitches. I also have been going to acupuncture off and on for the last 3 years for very mild arthritis in my knees which helps when I do go.
I then waited to hear from my dr. about my next step in this. Another mistake...should of called the first thing after the weekend. Finally 4 days later her nurse calls and orders a blood test. It was sent to Mayo in Rochester and here is what came back on the first report:
Anaplasmosis single sero details:
Your lyme screen is re-active. Continue the doxy. We will await the Western blot for confirmation. Your anaplasmosis screen is negative.
Ehrl single sero
negative for antibodies to human anaplasmosis formerly known as human granuloctic ehrlichia-hge.
This does not rule out a diagnosis of human anaplasmosis since antibodies typically appear 3-4 weeks after primary infection. It is recommended that a second serum be submitted in 3-4 weeks.
3 days later I get the Lyme West Blot results:
IGG Western Blot standard range negative/your value negative
lgG Band value p23
IGM Western Blot standard range negative/your value positive
lgM Band your value p41,p23
Interpretation:
Consistent with early infection with Borrelia burgdorferi. A new serum specimen should be submitted in 14-21 days to demonstrate seroconversion of lgG. lgM blot criteria is a diagnostic utility only during the first 4 weeks of early Lyme disease. CDC criteria require 5 bands for lgG or 2 bands for lgM for the Immunoblot to be considered positive. Bands eg,p41 may be detected in patients without Lyme disease and patterns not meeting the CDC criteria should be interpreted with caution.
Immunoblot should be ordered only on specimens that are positive or equivocal by a FDA-licensed Lyme disease antibody screening test. (e.g., EIA)
My dr. has me scheduled for a visit in 2 weeks followed by another blood test and she extended the doxy (a different type of doxy due to a shortage up here of the er's dr.s original prescription).
So upon receiving all of the info I start doing research from proper diet with Lymes disease, Lyme bacterias, watching Under My Skin 1 and 2, the Lymes Plum Island cover up stories, thyroid and Lymes, and Lyme message boards...this is how I found all of you.
This past week I got a call from the county nurse about my test results. (Where I live it is required that our county be notified of all positive Lyme blood tests because of the increase in the disease). She asked if I was on doxy and what were my symptoms. She said more and more people said the bulleyes rash is not what they had, they had what I had, the elongated red spot. She told me she would be mailing out a Lyme disease packet to me.
I had a few ?'s for my dr. so I decided to e-mail her. Where I live we have a "My Health" website where we communicate with our dr.s. I asked if my symptoms return after going off the doxy and prior to my appt. will she be willing to re-fill the doxy and being I have thyroid issues this is a double whammy to my immune system; will a new blood test for that be ordered. Instead of her e-mailing me back another p.a. dr did. He said he would gladly re-fill my doxy but 3 weeks should take care of me....STRIKE 1. How does he know that he assumed that. He said as for my thyroid Lymes does not affect the thyroid. STRIKE 2. He apparently has no idea how the thyroid works/or figures I don't know anything. I wrote him back thanking him for saying he would re-fill my doxy, and informing him that the thyroid controls the whole body and my body has been attacked by the Lyme bacteria and once it is in your cells,tissues,and blood it is/could be for life. I added that I would appreciate he share my original e-mail with my regular dr. I never heard back from him and I am glad.
So here is where I am at right now. Still feeling great but retaining water from the doxy. Went to the ISLD site and put my name on to be contacted by the closest LLMD within 100 miles of me. (That was last evening and haven't heard back anything). ( I am open to all avenues in treating this disease from an LLMD to holistic....also reading
that too much antibiotic over an extended time can damage liver and kidney so am concerned about that as well.)
BTW I am on Medicare and a supplement so I have no idea what will be covered or out of pocket. My doxy was covered by my plan and very inexpensive.
I have read some of the threads here and am so glad I found this sight to learn from. I feel for the many of you that have suffered for years with this, and feel that I might/could come down with illnesses from here on out due to the bite and thyroid issues.
Thanks for letting me tell my story and vent at the same time!!
Instead of going immediately to the dr. the next day I thought I would watch the area. My first mistake. I watched the area each day and it remained the size of a dime. I thought maybe it would take a while to heal since I am hypothyroid and things work slower with thyroid problems. Ten days later I left for a golf vacation to Illinois . That night I noticed that the dime size area was expanding to an elongated red mark. Did I come home...no...I just got there and wanted to play golf with friends. The next evening after golf and showering I felt warm and then cold a little stiff in the neck....thought maybe golf related... but still didn't want to come home. The following morning I woke up and was stiff in the hip and had a headache. I knew I had to come home and go right to the e.r. since it was the weekend. Upon stopping for fuel and going inside to pay for my fuel I had to walk a lot slower due to hip discomfort. I arrived home, grabbed the tick in the baggy and headed to the e.r. Upon arriving at the e.r. my temp. was 99.8. and bp was 145/82....I usually have bp of 120/75. When the dr. came in I was horrified to see it was a dr. that has misdiagnosed so many in our area that have Lymes. I was ready to get up and walk out and go elsewhere, but I thought I would hear her out first. She tells me she didn't think it was Lymes just a reaction to the way I pulled it out. I told her that my dime size wound expanded and I had all the symptoms, etc. Finally she said she would give me a two week supply of doxy but not a blood test. I was happy that she was willing to give me the doxy 100 mg twice a day. Took the first pill that afternoon and by evening had a temp of 102.6, and hip still hurt. Woke up during the night soaked and had to change pj's. Had a temp of 101.8. Next day temps were up and down but hip didn't hurt nearly as much. Day and a half later was feeling like nothing happened...go figure? I continued my daily routine of yoga and zumba without any glitches. I also have been going to acupuncture off and on for the last 3 years for very mild arthritis in my knees which helps when I do go.
I then waited to hear from my dr. about my next step in this. Another mistake...should of called the first thing after the weekend. Finally 4 days later her nurse calls and orders a blood test. It was sent to Mayo in Rochester and here is what came back on the first report:
Anaplasmosis single sero details:
Your lyme screen is re-active. Continue the doxy. We will await the Western blot for confirmation. Your anaplasmosis screen is negative.
Ehrl single sero
negative for antibodies to human anaplasmosis formerly known as human granuloctic ehrlichia-hge.
This does not rule out a diagnosis of human anaplasmosis since antibodies typically appear 3-4 weeks after primary infection. It is recommended that a second serum be submitted in 3-4 weeks.
3 days later I get the Lyme West Blot results:
IGG Western Blot standard range negative/your value negative
lgG Band value p23
IGM Western Blot standard range negative/your value positive
lgM Band your value p41,p23
Interpretation:
Consistent with early infection with Borrelia burgdorferi. A new serum specimen should be submitted in 14-21 days to demonstrate seroconversion of lgG. lgM blot criteria is a diagnostic utility only during the first 4 weeks of early Lyme disease. CDC criteria require 5 bands for lgG or 2 bands for lgM for the Immunoblot to be considered positive. Bands eg,p41 may be detected in patients without Lyme disease and patterns not meeting the CDC criteria should be interpreted with caution.
Immunoblot should be ordered only on specimens that are positive or equivocal by a FDA-licensed Lyme disease antibody screening test. (e.g., EIA)
My dr. has me scheduled for a visit in 2 weeks followed by another blood test and she extended the doxy (a different type of doxy due to a shortage up here of the er's dr.s original prescription).
So upon receiving all of the info I start doing research from proper diet with Lymes disease, Lyme bacterias, watching Under My Skin 1 and 2, the Lymes Plum Island cover up stories, thyroid and Lymes, and Lyme message boards...this is how I found all of you.
This past week I got a call from the county nurse about my test results. (Where I live it is required that our county be notified of all positive Lyme blood tests because of the increase in the disease). She asked if I was on doxy and what were my symptoms. She said more and more people said the bulleyes rash is not what they had, they had what I had, the elongated red spot. She told me she would be mailing out a Lyme disease packet to me.
I had a few ?'s for my dr. so I decided to e-mail her. Where I live we have a "My Health" website where we communicate with our dr.s. I asked if my symptoms return after going off the doxy and prior to my appt. will she be willing to re-fill the doxy and being I have thyroid issues this is a double whammy to my immune system; will a new blood test for that be ordered. Instead of her e-mailing me back another p.a. dr did. He said he would gladly re-fill my doxy but 3 weeks should take care of me....STRIKE 1. How does he know that he assumed that. He said as for my thyroid Lymes does not affect the thyroid. STRIKE 2. He apparently has no idea how the thyroid works/or figures I don't know anything. I wrote him back thanking him for saying he would re-fill my doxy, and informing him that the thyroid controls the whole body and my body has been attacked by the Lyme bacteria and once it is in your cells,tissues,and blood it is/could be for life. I added that I would appreciate he share my original e-mail with my regular dr. I never heard back from him and I am glad.
So here is where I am at right now. Still feeling great but retaining water from the doxy. Went to the ISLD site and put my name on to be contacted by the closest LLMD within 100 miles of me. (That was last evening and haven't heard back anything). ( I am open to all avenues in treating this disease from an LLMD to holistic....also reading
that too much antibiotic over an extended time can damage liver and kidney so am concerned about that as well.)
BTW I am on Medicare and a supplement so I have no idea what will be covered or out of pocket. My doxy was covered by my plan and very inexpensive.
I have read some of the threads here and am so glad I found this sight to learn from. I feel for the many of you that have suffered for years with this, and feel that I might/could come down with illnesses from here on out due to the bite and thyroid issues.
Thanks for letting me tell my story and vent at the same time!!
Thanks Jackie and today I heard from the ILAD with listings of dr's in my area. First one was my new dr.
You ask: "Do all clinics just do the Western Blot unless you ask for the IGENEX?" It's the docs who decide what tests to run, and the IGeneX tests have to be shipped to IGeneX Labs in California to run the tests on your blood sample. Not all labs may keep IgeneX test kits on hand to draw the blood with, and so on. IGeneX test materials are, I think, quite different from Western blot and ELISA test kits. If your local lab doesn't already have the IGeneX test kits, the kits can be shipped to the doc's office or the lab, which you then take to the lab along with your doc's test orders, or maybe it's done differently by different docs. I don't really know all the ways it can be achieved, but it's doable.
Your new doc sounds like a gem! I did see the new dr. today. My head is spinning from all the info. she bestowed on me. "She said not to buy any of this from Walmart or Walgreens" -- because the quality of the goods may need to be more refined than for everyday vitamins. "She said doxy is great for the initial start of Lymes but it like a bandaid" -- well said! I don't recall that I took either Cefuroxime or Clarithromycin, but I know of them. There is no one 'right' way to treat Lyme and its coinfections, and it sounds like your doc thinks big thoughts. This is good!
You say, "She wants to see me back in 6 weeks. I am guessing she will do the IGENEX test then to see what is what. I was very pleased with her knowledge about Lymes and the 90 minute visit." Yes, this is very promising.
Be sure not to change or increase or decrease *any* of your meds or the doses of the meds without getting your doc's agreement, okay? If you are having side effects like not feeling good or whatever, call the doc's office and leave a detailed message for the doc, so she can evaluate and advise anything different that you should do, if anything. -->> No winging it! <<--
Keep us posted, okay? Take care -- sending you all good thoughts --
Your new doc sounds like a gem! I did see the new dr. today. My head is spinning from all the info. she bestowed on me. "She said not to buy any of this from Walmart or Walgreens" -- because the quality of the goods may need to be more refined than for everyday vitamins. "She said doxy is great for the initial start of Lymes but it like a bandaid" -- well said! I don't recall that I took either Cefuroxime or Clarithromycin, but I know of them. There is no one 'right' way to treat Lyme and its coinfections, and it sounds like your doc thinks big thoughts. This is good!
You say, "She wants to see me back in 6 weeks. I am guessing she will do the IGENEX test then to see what is what. I was very pleased with her knowledge about Lymes and the 90 minute visit." Yes, this is very promising.
Be sure not to change or increase or decrease *any* of your meds or the doses of the meds without getting your doc's agreement, okay? If you are having side effects like not feeling good or whatever, call the doc's office and leave a detailed message for the doc, so she can evaluate and advise anything different that you should do, if anything. -->> No winging it! <<--
Keep us posted, okay? Take care -- sending you all good thoughts --
Thanks for the kind words about my husband. It was a battle with the VA and his failing health issues due to AO.
Mojogal wrote that Medicare paid for her IGENEX test. Thanks for checking out the financial part, but I do not think I would qualify. Do all clinics just do the Western Blot unless you ask for the IGENEX?
I did see the new dr. today. My head is spinning from all the info. she bestowed on me. I knew about the Epsom Salts bath 3 times a week and the no sugar what so ever diet. She recommended cod liver oil tablets, a good probiotic which I already take, and vit c and d. She said not to buy any of this from Walmart or Walgreens. She said doxy is great for the initial start of Lymes but it like a bandaid. She prescribed 2 months of both Ceruroxime 500mg twice a day, and Clarithromycin 500mg twice a day.
Has anybody used these 2 antibiotics?
She wants to see me back in 6 weeks. I am guessing she will do the IGENEX test then to see what is what. I was very pleased with her knowledge about Lymes and the 90 minute visit.
Mojogal wrote that Medicare paid for her IGENEX test. Thanks for checking out the financial part, but I do not think I would qualify. Do all clinics just do the Western Blot unless you ask for the IGENEX?
I did see the new dr. today. My head is spinning from all the info. she bestowed on me. I knew about the Epsom Salts bath 3 times a week and the no sugar what so ever diet. She recommended cod liver oil tablets, a good probiotic which I already take, and vit c and d. She said not to buy any of this from Walmart or Walgreens. She said doxy is great for the initial start of Lymes but it like a bandaid. She prescribed 2 months of both Ceruroxime 500mg twice a day, and Clarithromycin 500mg twice a day.
Has anybody used these 2 antibiotics?
She wants to see me back in 6 weeks. I am guessing she will do the IGENEX test then to see what is what. I was very pleased with her knowledge about Lymes and the 90 minute visit.
I like your doc, just for following up when she could have waited till tomorrow. She's dedicated, and she's taking you serious. That's good.
In your situation, I would be inclined to get the IGeneX tests run, just to get all the cards on the table and know what your medical baseline is now.
I just did a quick google search about financial assistance for the IGeneX tests if you are truly strapped, and at least one thing of possible interest came up:
============================
"Lyme Test Access Program (Lyme-TAP) | About Lyme-TAP
www.lymetap.com/lyme-disease-financial-assitance
"Payments of approved grants may take several weeks.
"This nationwide assistance program was made possible by a very generous donation from IGeneX Inc., ...
============================
So you might call IGeneX and ask them which labs they donate too, since you are strapped and don't know which lab might have such a program. And I'm sure it will warm their hearts if you promise to donate IGeneX when you are well again. I found the IGeneX people to be very kind and easy to work with in general. They are a small company, so they can be flexible, perhaps. And do ask family and close friends if you need a loan. It's not like you're asking for a pedicure before going on vacation.
You could a mention of your concerns about Agent Orange and why. I am very sorry to learn about your husband, and will remember him, and you. Bless you both.
Take care, and keep us posted!
In your situation, I would be inclined to get the IGeneX tests run, just to get all the cards on the table and know what your medical baseline is now.
I just did a quick google search about financial assistance for the IGeneX tests if you are truly strapped, and at least one thing of possible interest came up:
============================
"Lyme Test Access Program (Lyme-TAP) | About Lyme-TAP
www.lymetap.com/lyme-disease-financial-assitance
"Payments of approved grants may take several weeks.
"This nationwide assistance program was made possible by a very generous donation from IGeneX Inc., ...
============================
So you might call IGeneX and ask them which labs they donate too, since you are strapped and don't know which lab might have such a program. And I'm sure it will warm their hearts if you promise to donate IGeneX when you are well again. I found the IGeneX people to be very kind and easy to work with in general. They are a small company, so they can be flexible, perhaps. And do ask family and close friends if you need a loan. It's not like you're asking for a pedicure before going on vacation.
You could a mention of your concerns about Agent Orange and why. I am very sorry to learn about your husband, and will remember him, and you. Bless you both.
Take care, and keep us posted!
Yeah, This dr. just called me from her home after checking her clinic messages and getting a cancellation for tomorrow, I am going to see her. She said it was up to me if I wanted the IGENEX test but since I already have Lymes this test could be a waste of my money right now since this bacteria can be dormant at times. She said our area is heavily populated with unknowing lyme patients. She believes this is also sexually transmitted and can be passed on through breast feeding. Being my late husband died of Agent Orange complications I feel I am fighting my own Agent Orange issues.
I am still keeping my regular dr. appt. and blood test next week and will ask them what planet they came from when they tell me my thryoid is not at risk.
Thanks for listening and lighting that fire under me.
I am still keeping my regular dr. appt. and blood test next week and will ask them what planet they came from when they tell me my thryoid is not at risk.
Thanks for listening and lighting that fire under me.
Good for you! Taking charge as you are doing is the way to go imo.
Keep us posted!
Keep us posted!
JackieCalifornia. You are absolutely right and I am taking your advice seriously. I left a message on this dr's. answering service informing her that I would like to set up an appt. a.s.a.p. instead of waiting to hear from the ILAD.
I took my last doxy this morning. I have a couple close friends here who are chronic and they thought they were clear but obviously they are not. Even worse they were not even given their test results back or told what strain they had. They were told they had Lymes and that was that and they did not ? it. In fact one gal was given only 2 doxy pills to be taken right away since she had Lymes last year as well. Unreal.
Thanks for addressing the urgency in my case. Why did I get so laxed in my thinking? We know the answer to that one!!!
I will keep you posted.
I took my last doxy this morning. I have a couple close friends here who are chronic and they thought they were clear but obviously they are not. Even worse they were not even given their test results back or told what strain they had. They were told they had Lymes and that was that and they did not ? it. In fact one gal was given only 2 doxy pills to be taken right away since she had Lymes last year as well. Unreal.
Thanks for addressing the urgency in my case. Why did I get so laxed in my thinking? We know the answer to that one!!!
I will keep you posted.
You say, "I think I will make an appt. with her even though nothing is happening to me yet. I have a feeling down the road I will have more problems with Lymes because of my thryroid."
Lyme won't go away by itself, and it can get far, far worse, even leading to death. Not trying to scare you, but what are you waiting for?
Lyme is in the same bacterial family as syphilis, and you wouldn't sit waiting to see if syphilis got worse. Get going!!
Lyme won't go away by itself, and it can get far, far worse, even leading to death. Not trying to scare you, but what are you waiting for?
Lyme is in the same bacterial family as syphilis, and you wouldn't sit waiting to see if syphilis got worse. Get going!!
Mojogal, Since all this happened I am reading like mad. Just got the book Out of the Woods.
My next blood test is in 10 days and I am going to ask or demand that I get the IGENEX one. If not I will just go through their procedure and not believe anything they tell me when the results come back....lol
My doxy for 2 weeks was $6.37, so that wasn't a problem.
So are you saying that even though one sees an LLMD; Medicare or my supplement will pay for whatever they prescribe? I didn't know one could apply for extra help from Medicare. I don't think I would qualify if it something like Medicaid?
Thanks for your input. This group is great!!!!
My next blood test is in 10 days and I am going to ask or demand that I get the IGENEX one. If not I will just go through their procedure and not believe anything they tell me when the results come back....lol
My doxy for 2 weeks was $6.37, so that wasn't a problem.
So are you saying that even though one sees an LLMD; Medicare or my supplement will pay for whatever they prescribe? I didn't know one could apply for extra help from Medicare. I don't think I would qualify if it something like Medicaid?
Thanks for your input. This group is great!!!!
JackieCalifornia, Thanks for the warm welcome to this group. In my original post I meant to type ILAD but typed ISLD by mistake...sorry. I have not heard back from anyone at the ILAD as of yet. I did by chance happen to find someone that could help me down the road. I knew the post mistress in town has chronic Lymes so I asked her who helped her. She gave me the name of a nearby fnp....of all things....that treats Lymes very aggressively. Upon Googling her credentials I come to find out that she has worked on the east coast with LLMD's, has lectured in our state about Lymes chronic and co-infections, has offered public awareness open houses at her practice and even has a short You Tube clip. I decided to call her and tell her my situation. She said it takes a couple of days for ILAD to get back to me if I go that route. She also laughed about what my own dr's associate said about my thyroid. She doesn't take Medicare, charges $350.00 for a 90 minute appt. She treats both holistically and by prescription. To top it off she lives in my little town and her dad put on an addition to our garage when we first moved here. I think I will make an appt. with her even though nothing is happening to me yet. I have a feeling down the road I will have more problems with Lymes because of my thryroid. I will keep you posted.
You know a lot which is great. Find an LLMD. I am on Medicare. Medicare covers all igenex tests for Lyme and co-infections. I have never gotten a bill from them.
My thyroid is badly compromised from Lyme which you knew already.
You will need different meds for co-infections. Sometimes igenex tests aren't great for co-infections but a good Dr will give you a clinical diagnoses.
Oh, depending on your financial situation, apply for extra help from Medicare. The highest I pay for a drug is $6 and usually it's $2.50. Good luck
My thyroid is badly compromised from Lyme which you knew already.
You will need different meds for co-infections. Sometimes igenex tests aren't great for co-infections but a good Dr will give you a clinical diagnoses.
Oh, depending on your financial situation, apply for extra help from Medicare. The highest I pay for a drug is $6 and usually it's $2.50. Good luck
Welcome to MedHelp Lyme --
It sounds like you have been through the wringer! Glad you found us --
I am not familiar with ISLD, but am guessing LD stands for Lyme disease (duh). You might also try -- ILADS [dot] org -- for some names. ILADS = International Lyme and Associated Disease Society. It's fairly well known and has a referral function to help you find a Lyme doc nearby. There is also quite good reading material about Lyme on that site, material written by well-respected Lyme docs. Dr Burrascano's treatment guidelines may be of interest to you. I don't know when they were last updated, but the overall view is worthwhile.
Whether you go for an ILADS member doc or others, there is no guarantee that any doc who says s/he treats Lyme will actually do so in a manner that is up to date, as you have already learned, so just keep your antennae up -- you are already far along in that regard.
I was treated with antibiotics over a period of months and had no problems. I was NOT treated with doxycycline, because it is (so I read) effective only if begun very soon after the initial infection, and I was several months (and 20 clueless MDs) before I was finally diagnosed.
You say, "I am open to all avenues in treating this disease from an LLMD to holistic....also reading that too much antibiotic over an extended time can damage liver and kidney so am concerned about that as well." Do talk with your doc about that, but I was on antibiotics for more than 6 months, first for babesiosis and then for Lyme, and while I am very sensitive to many meds, I had NO problems then or since from the treatment. There is a more recent trend toward herbs etc., but if I got Lyme again, I would go antiobiotics again too.
"BTW I am on Medicare and a supplement so I have no idea what will be covered or out of pocket. My doxy was covered by my plan and very inexpensive." Whatever it costs to get rid of Lyme is worthwhile. If you cannot manage the funding, there are charities such as LymeTAP and LymeLight Foundation that may be able to help.
There is sometimes much talk about whether the rash was red enough or circular enough or whatever to really be Lyme ... but many of us never saw a tick OR a rash but absolutely had Lyme -- including me and a family member. And the whole idea that doxycycline will cure Lyme no matter what is an outdated view that the IDSA (Infectious Disease Society of America) continues to hold. Someday this will be figured out, but there is now a true divide in the medical community, not unlike a few decades ago when AIDS suddenly arrived: in that case, the CDC [Centers for Disease Control] held firmly to the idea that You Cannot Get AIDS Unless You are Gay or Black. That is absurd on its face, but that kind of idiocy from the CDC is regrettably common when they are in panic mode.
Good for you for keeping your wits about you. What you need is a Lyme specialist, which is often to be found among member of ILADS. There is no test to become an ILADS member, and some of them have some odd views, but with a little snooping around and your common sense in play, you can find a good doc who knows his/her stuff. You have already graduated into the ranks of Knowing Dumb Docs When You See One, so keep that healthy skepticism in play. Lyme is still a developing field, so there will be variations among docs as to diagnosis and treatment, but you sound to be well prepared to figure things out as much as anyone.
Keep us posted!
It sounds like you have been through the wringer! Glad you found us --
I am not familiar with ISLD, but am guessing LD stands for Lyme disease (duh). You might also try -- ILADS [dot] org -- for some names. ILADS = International Lyme and Associated Disease Society. It's fairly well known and has a referral function to help you find a Lyme doc nearby. There is also quite good reading material about Lyme on that site, material written by well-respected Lyme docs. Dr Burrascano's treatment guidelines may be of interest to you. I don't know when they were last updated, but the overall view is worthwhile.
Whether you go for an ILADS member doc or others, there is no guarantee that any doc who says s/he treats Lyme will actually do so in a manner that is up to date, as you have already learned, so just keep your antennae up -- you are already far along in that regard.
I was treated with antibiotics over a period of months and had no problems. I was NOT treated with doxycycline, because it is (so I read) effective only if begun very soon after the initial infection, and I was several months (and 20 clueless MDs) before I was finally diagnosed.
You say, "I am open to all avenues in treating this disease from an LLMD to holistic....also reading that too much antibiotic over an extended time can damage liver and kidney so am concerned about that as well." Do talk with your doc about that, but I was on antibiotics for more than 6 months, first for babesiosis and then for Lyme, and while I am very sensitive to many meds, I had NO problems then or since from the treatment. There is a more recent trend toward herbs etc., but if I got Lyme again, I would go antiobiotics again too.
"BTW I am on Medicare and a supplement so I have no idea what will be covered or out of pocket. My doxy was covered by my plan and very inexpensive." Whatever it costs to get rid of Lyme is worthwhile. If you cannot manage the funding, there are charities such as LymeTAP and LymeLight Foundation that may be able to help.
There is sometimes much talk about whether the rash was red enough or circular enough or whatever to really be Lyme ... but many of us never saw a tick OR a rash but absolutely had Lyme -- including me and a family member. And the whole idea that doxycycline will cure Lyme no matter what is an outdated view that the IDSA (Infectious Disease Society of America) continues to hold. Someday this will be figured out, but there is now a true divide in the medical community, not unlike a few decades ago when AIDS suddenly arrived: in that case, the CDC [Centers for Disease Control] held firmly to the idea that You Cannot Get AIDS Unless You are Gay or Black. That is absurd on its face, but that kind of idiocy from the CDC is regrettably common when they are in panic mode.
Good for you for keeping your wits about you. What you need is a Lyme specialist, which is often to be found among member of ILADS. There is no test to become an ILADS member, and some of them have some odd views, but with a little snooping around and your common sense in play, you can find a good doc who knows his/her stuff. You have already graduated into the ranks of Knowing Dumb Docs When You See One, so keep that healthy skepticism in play. Lyme is still a developing field, so there will be variations among docs as to diagnosis and treatment, but you sound to be well prepared to figure things out as much as anyone.
Keep us posted!
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