posted
I was diagnosed with Lyme disease on August 2nd.I had a rash that I found on the back of my leg that looked like a bulls eye and had been there for about a aweek and a half,I don't know how long it was there before I noticed it,it started to slowly going away,I didn't know anything about Lyme disease or the bulls eye rash,I showed the rash to my sister who is a R.N and she told me to get to the doctor A.S.A.P and I did, with this I had headaches and some tiredness,today is one week that I've been on Doxycycline,I called my doc today to talk to her about more things that I've noticed such as : Night sweats Upset stomach Joint pain (knee) Muscle pain Headaches Tingling, numbness hands and feet Difficulty with speech (I know what I want to say but it comes out wrong) Disturbed sleep No desire to do anything Brain fog Light-headedness, clumsy bumping into objects My doctor stated that none of these things have to do with Lyme disease and to call again on friday if things don't improve.I have done some research on lyme disease and there are so many different things that different people report,where can I find another doctor in my area to see(Lynn,Massachusetts) Thank you ,Tawnie Posts: 5 | From lynn,massachusetts usa | Registered: Aug 2004
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Welcome aboard, you will find some good folks here.
First off, what you are going through is called a herxheimer reaction, or herx for short. What is happening is that the doxy is killing the lyme, there by releasing the lyme toxins into the system. All of what you are feeling is normal. Even though you feel bad, its a good thing, It means you are killing them. This could go on a while, depending on how sick you are and how bad your strain is.
Check out the links on the front page of lymenet. Also read all of Dr. B's guidelines. Hopefully someone will paste a bunch of links for you to read, Im on my parents computer so Im not as armed as I ususally am.
Right now you should be drinking lots of water with a little lemon squeezed in. It will help rince some of the toxins out.
Also make sure your Doc is a lyme litterate MD (LLMD) You will need to be tested for coinfections, and treated accordingly. If they try to tell you that you only need 30 days of abx, then you need to run far away from them.
Since your sis is an RN maybe she knows a lyme specialist, otherwise find one on the doctors board. there are alot off mass lymies here they will help you find a good doc.
greg
Posts: 740 | From frederick,md,usa | Registered: Jun 2001
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I sent you an email.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Welcome to LymeNet, Tawnie. So sorry you have Lyme but I'm glad you found this website.
If your dr said none of your symptoms "have to do with Lyme", then you definitely need to find a Lyme Literate Med Dr (LLMD)- ASAP. TheCrimeOfLyme may have sent you this info.
If not, go to Seeking a Dr & put your location in the title. Dr's names are not given here without their permission, but info will be e-mailed to you.
Hopefully, your dr is willing to read info from the International Lyme & Associated Diseases Society (ILADS) website. If he/she is receptive to the idea, then maybe (s)he could work with your LLMD. Would be more convenient for you & your dr would be working with one of the Lyme experts.... a WIN - WIN situation.
Also, other Lyme patients would benefit from this team approach to treatment. Since your sister is a nurse, I'm sure she'd be interested in the ILADS website, too. www.ilads.org Lots of great info there!!!
Not only are your symptoms typical of Lyme, but they could also be symptoms of co-infections, like Babesiosis, Ehrlichiosis, & Bartonella.
You really need to be checked for Co-Infections by a LLMD. Symptoms overlap with Lyme, but they take different meds.
For the range of symptoms you're having, there's also a possibility that your body has been dealing with Lyme for some time, but the new bite brought out the symptoms in a relatively short time. An LLMD would consider this.
Adequate treatment is the key to getting control of Tick-Borne Diseases (TBDs) & the earlier the treatment the better the results.
Print "Diag Hints & Treat Guidelines.." for your dr. www.ilads.org/burrascano_1102.htm 32 pages of excellent info by one of the best LLMDs.
pages 16-18: Antibiotics - recommended dose & recommended length of treatment pages 4-5 & 20-24: Co-Infections Be sure to read Babesiosis very carefully. Sweats & headaches are symptoms. Also, some of your symptoms could be Bartonella, especially neurological problems.
In Dr B's Guidelines, read about Acidophilus, from the Health Food Store - pages 24 & 29.
Antibiotics (abx) kill good bacteria with the bad, so the good bacteria must be replenished to prevent a systemic yeast infection. Dr B says take 2 with each meal.
Be sure to have 2 hours between abx & acidoph - before & after - or it won't be able to work as well. May have to plan snacks to get this in your schedule of pills.
quote:Originally posted by cbb: Welcome to LymeNet, Tawnie. So sorry you have Lyme but I'm glad you found this website.
If your dr said none of your symptoms "have to do with Lyme", then you definitely need to find a Lyme Literate Med Dr (LLMD)- ASAP. TheCrimeOfLyme may have sent you this info.
If not, go to Seeking a Dr & put your location in the title. Dr's names are not given here without their permission, but info will be e-mailed to you.
Hopefully, your dr is willing to read info from the International Lyme & Associated Diseases Society (ILADS) website. If he/she is receptive to the idea, then maybe (s)he could work with your LLMD. Would be more convenient for you & your dr would be working with one of the Lyme experts.... a WIN - WIN situation.
Also, other Lyme patients would benefit from this team approach to treatment. Since your sister is a nurse, I'm sure she'd be interested in the ILADS website, too. www.ilads.org Lots of great info there!!!
Not only are your symptoms typical of Lyme, but they could also be symptoms of co-infections, like Babesiosis, Ehrlichiosis, & Bartonella.
You really need to be checked for Co-Infections by a LLMD. Symptoms overlap with Lyme, but they take different meds.
For the range of symptoms you're having, there's also a possibility that your body has been dealing with Lyme for some time, but the new bite brought out the symptoms in a relatively short time. An LLMD would consider this.
Adequate treatment is the key to getting control of Tick-Borne Diseases (TBDs) & the earlier the treatment the better the results.
Print "Diag Hints & Treat Guidelines.." for your dr. www.ilads.org/burrascano_1102.htm 32 pages of excellent info by one of the best LLMDs.
pages 16-18: Antibiotics - recommended dose & recommended length of treatment pages 4-5 & 20-24: Co-Infections Be sure to read Babesiosis very carefully. Sweats & headaches are symptoms. Also, some of your symptoms could be Bartonella, especially neurological problems.
In Dr B's Guidelines, read about Acidophilus, from the Health Food Store - pages 24 & 29.
Antibiotics (abx) kill good bacteria with the bad, so the good bacteria must be replenished to prevent a systemic yeast infection. Dr B says take 2 with each meal.
Be sure to have 2 hours between abx & acidoph - before & after - or it won't be able to work as well. May have to plan snacks to get this in your schedule of pills.
page 16: Oral Therapy Doxycycline: Adults-100 mg qid (4 times/day) with food...only effective at high blood levels.
page 18: Disseminated Disease Early: milder symptoms present for less than 1 yr.... Adults: oral therapy until no active disease (NO symptoms) for 4 weeks. Some are now saying continue treatment until NO symptoms for 6 to 8 weeks, to be sure.
Read #10. It begins: "There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease...."
You had the bull's eye rash. That is a definite diagnosis of Lyme disease.
If you do NOT get adequate treatment now, LD becomes increasingly difficult to deal with.
Based on my opinions, I recommend:
1)Find a LLMD who is recommended by people here on LymeNet (Seeking a Dr). You need someone with lots of 'satisfied customers' & a good 'track record'.
2)Discuss with your dr that you want an evaluation by a LLMD & would (s)he please work with the LLMD in treating you.
3)See if your dr will read the info from the ILADS website & increase your dose of Doxy & lengthen the time of treatment until you can see an LLMD. Sometimes it takes a while for an appt.
4)See if your dr will consult with the LLMD about what to do before your appt with the LLMD.
Read & learn all you can so that you can work with your LLMD & your local dr.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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quote:Originally posted by cbb: Welcome to LymeNet, Tawnie. So sorry you have Lyme but I'm glad you found this website.
If your dr said none of your symptoms "have to do with Lyme", then you definitely need to find a Lyme Literate Med Dr (LLMD)- ASAP. TheCrimeOfLyme may have sent you this info.
If not, go to Seeking a Dr & put your location in the title. Dr's names are not given here without their permission, but info will be e-mailed to you.
Hopefully, your dr is willing to read info from the International Lyme & Associated Diseases Society (ILADS) website. If he/she is receptive to the idea, then maybe (s)he could work with your LLMD. Would be more convenient for you & your dr would be working with one of the Lyme experts.... a WIN - WIN situation.
Also, other Lyme patients would benefit from this team approach to treatment. Since your sister is a nurse, I'm sure she'd be interested in the ILADS website, too. www.ilads.org Lots of great info there!!!
Not only are your symptoms typical of Lyme, but they could also be symptoms of co-infections, like Babesiosis, Ehrlichiosis, & Bartonella.
You really need to be checked for Co-Infections by a LLMD. Symptoms overlap with Lyme, but they take different meds.
For the range of symptoms you're having, there's also a possibility that your body has been dealing with Lyme for some time, but the new bite brought out the symptoms in a relatively short time. An LLMD would consider this.
Adequate treatment is the key to getting control of Tick-Borne Diseases (TBDs) & the earlier the treatment the better the results.
Print "Diag Hints & Treat Guidelines.." for your dr. www.ilads.org/burrascano_1102.htm 32 pages of excellent info by one of the best LLMDs.
pages 16-18: Antibiotics - recommended dose & recommended length of treatment pages 4-5 & 20-24: Co-Infections Be sure to read Babesiosis very carefully. Sweats & headaches are symptoms. Also, some of your symptoms could be Bartonella, especially neurological problems.
In Dr B's Guidelines, read about Acidophilus, from the Health Food Store - pages 24 & 29.
Antibiotics (abx) kill good bacteria with the bad, so the good bacteria must be replenished to prevent a systemic yeast infection. Dr B says take 2 with each meal.
Be sure to have 2 hours between abx & acidoph - before & after - or it won't be able to work as well. May have to plan snacks to get this in your schedule of pills.
posted
As you can see in the above quotes in my last response, Doxy 200 mg/day is not as much as Dr B recommends & 21 days is not long enough treatment according to the ILADS LLMDs.
It would be great if you could make the new info available for your dr. Other Lyme patients could be helped!!
I still recommend you see an LLMD to be sure you get proper treatment - ASAP.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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quote:Originally posted by cbb: As you can see in the above quotes in my last response, Doxy 200 mg/day is not as much as Dr B recommends & 21 days is not long enough treatment according to the ILADS LLMDs.
It would be great if you could make the new info available for your dr. Other Lyme patients could be helped!!
I still recommend you see an LLMD to be sure you get proper treatment - ASAP.
My sister is working at the hospital till 8 tonight and will speak with some of the doctors to see who they recommend and what treatments I should be receiving,thanks for all the information.
Posts: 5 | From lynn,massachusetts usa | Registered: Aug 2004
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posted
I don't know about the drs & hospital in your home town, but chances of having a LLMD are pretty slim. Generally speaking, there are very few cases of Lyme that are successfully treated at hospitals & prestigious medical institutions.
I still recommend you go to Seeking a Dr & put your location in the title. Info will be e-mailed to you about the best Lyme drs in your area. See if any of the names from the hospital are recommended by LymeNet members.
At the left, click "Support Groups" & contact those in your state & surrounding states. See who they recommend. Compare names from all 3 sources.
Don't want to sound so pessimistic, but in my opinion, your chances of getting proper treatment are much, much better if you see a LLMD recommended by people here on LymeNet, especially if he is a member of ILADS.
You need a Lyme dr with lots of experience who has a lot of "satisfied customers".
The physician you choose now will have a direct influence on your health for the rest of your life.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sounds like you are thinking like a "normal" person meaning....you are sick so you will ask around for a good doc to treat you.
WRONG!
I thought that too and went 18 months before finally finding a lyme specialist to treat me.
I wonder now if I had gone to him in the beginning if I would be fine and back to work by now instead of battling this 3 years later.
I found the lyme specialist by contacting the lyme disease association and posting here on lymenet under docs needed.
The same names kept coming up. I was amazed at the fact that there were only two or three in my whole state at the time.
Now, I know that others even need to travel out of state to find a good LLMD.
I have seen over 35 docs and have only found 2 that were lyme literate.
And the NP that comes once a week to change my dressing is not lyme literate nor is she interested in reading the information that I give her.
She has been coming for 11 weeks now and didn't know what a herxheimer reaction was.
My point is .....get thee to a LLMD.
I too asked around and was referred to an IVY league doc. He started off good with letting me know he was very well aware of lyme disease because he went to an IVY league school on the East Coast. He also said California had the second highest rate of lyme.
I was impressed until he looked at my western blot test results and didn't know how to read them.
His comment was that Igenex Lab contradicted themselves. Since, I had gone to a lyme specialist and had been told how to read the test results, I knew he didn't really know at that time.
He also seemed more concerned about me having more than a couple of weeks of antibiotics than getting me well.
Consumer beware! The medical field is not what you think it is when it comes to lyme disease.
Most or ignorant and unwilling to learn.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
I concur with the above statements. Just asking a doctor in the hospital where your sister works, will probably not get you to the type of doctor you have to have in order to fight and I mean fight this most complicated disease.
Doctor's are taught in Medical School about a single paragraph on Lyme Disease and the information that they are being taught has been proven over and over again and again to be wrong. Two weeks of 100-200mg of Doxycycline will NOT irradicate this disease from you body.
I made that mistake and toughed it out with my regular PCP, bless his heart for trying anyway, and the "standard" treatment taught to them for the chronic stage set me back big time. My famous LLMD, known to many here and many patients of his post here or read posts, would not have put me on IV in the first place as my PCP did.
After 8 months of being treated, wrongly, by my PCP, I finally went to see my LLMD. Don't make the mistake that many of us here before you have made when we were virtually ignorant of Lyme Disease.
The following links will really help you on your way to wellness and will save you a lot of time by getting the knowledge you will need to fight this most complicated disease. You have to educate yourself in order to get better. You are on your way by asking about Lyme Literate Medical Doctors (LLMDs) in your area.
And, this link will help you if you want answers quickly, because about 98% or so of all questions related to Lyme Disease have been answered before and are still revelent today.
The pic of your rash sure looked like a bulls-eye (I sent you an email)
Take another pic, so all the rash shows, if you can. A picture of a bulls eye will be your ace in the hole when it comes to getting treated!
I hope you're listening to all our pleas----kam, cbb, greg and tree.
We don't want you to become a Lyme statistic.
If you have the time, let us know what your sister accomplished.
cave76
Well you were all right,the docs at the hospital had no advice or even know how to treat or had any info on lyme,although 1 doc did sit down my sister and go on to the doctors medical library computer and got some information for my sister and himself, my sister is still working on finding a good lyme doc,I was sent a list of doctors from a lymenet user and one of them was Dr.Danto and I know some of you said not go to him.So I'm still looking for information and help as well as my sister.Thanks for everything.
Posts: 5 | From lynn,massachusetts usa | Registered: Aug 2004
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Recommend you also contact Support Groups in & around your state about LLMDs.
Also, keep in mind that time between tick bite & treatment is VERY significant. The earlier the treatment, the better the results, so try to make a decision & start treatment as soon as possible.
Please keep in touch & let us know how you're doing.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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Rita
Unregistered
posted
They're all symptoms of Lyme. Get to a LLMD ASAP.
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Tawnie,
I have sent you an e-mail with some info about LLMDs in the New England area.
--Annie
------------------ ``The best way out is always through.'' -Robert Frost
You just described a partial list of classic Lyme symptoms all of which I had BEFORE any Doxy or any treatment. As has been suggested, seek a Lyme Literate health care provider to treat you. It will save you time, money and the long-term effects if treated adequately. I have been insulted recently by an oral surgeon who treated me after a root tip was left in by a dentist and I got infection and cellulitis. He was VERY arrogant and condescending and let me know that he does not believe there is such a thing as chronic Lyme. I guess we all have our stories, but be encouraged that you found this site and communicate with those who have been there done that! Be VERY encouraged that you have jumped on this as soon as you saw the rash. Many of us never had a rash and were not tested until we had developed Chronic Lyme. Best of health to you, Magdalena
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