LymeNet Flash: New User with Lyme question

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Posted by Morgan (Member # 5909) on :

I live in the Southeast and found an attached tick on me two years ago. I developed the bullseye rash. Because I was told (correctly so) that we do not have Lyme in our state (yet), I did not take antibiotics. However, I later learned that while we do not have Lyme, we do have STARI (kissing cousins of Lyme). About 6 months ago, my right knee began filling with fluid, swelling, and getting hot. Now I am having a weird pain in both hands - they feel sore and bruised when I bend them, but are not swollen or hot. Now the toes of my left foot are doing the same. In addition, when I sit or lie down for any period of time, I am very stiff. What I need to know is - are these signs of Lyme? I know the swollen knee is, but what about the other?

To complicate matters, I have had CFIDS for 9 years. I also developed West Nile virus 10 months ago. So it is sometimes hard to know where one starts and the other leaves off. However, I do know the swollen knee is not a CFIDS symptom.

Any input would be greatly appreciated.

Morgan

Posted by minoucat (Member # 5175) on :

Welcome to Lymenet, but I'm sorry for the reason you're here!

Lyme, or whatever local version the medics feel comfortable calling it, is not the only disease transmitted by ticks. Common coinfections are Erlichiosis, babesiosis, mycoplasma, and bartonella, and there are others. Any time you've been bitten by a tick you need to suspect coinfections, too. The coinfections all have their own treatments -- I've listed some links below.

The knee swelling and stiffness could well indicate Lyme or another TBD. Since your immune system is already compromised, I would strongly suspect that possibility. Also, many people working with CFIDS now suspect a pathogen to be at the root of that illness.

Here are some links for you to check out. Most importantly -- go see an LLMD and see what's up. It can be tough to find one, but keep at it. There are all manner of treatment approaches, from antibiotics to Rife to naturopathic to whatever, and many people use a combination of them all. It's well worth investing the time to research all of these and find what fits you.

Testing is an excellent idea, but use a good laboratory -- Igenex by preference; others with a decent reputation are Bowen and MDL. Be aware that the tests are only a guide, and that good LLMDs focus on clinical symptoms and on your response to medication.

Here are some links to help:

Diag Hints & Treatment Guidelines..."

As well as the "Basic Info" at http://www.ilads.org

Also see Links for new LymeNet members at http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Coinfections http://flash.lymenet.org/ubb/Forum1/HTML/021366.html
http://flash.lymenet.org/ubb/Forum1/HTML/008428.html

Doctors can be found through the Seeking a Doctor forum. at http://flash.lymenet.org/scripts/Ultimate.cgi

Best of luck. Come back any time with questions and updates.

[This message has been edited by minoucat (edited 10 July 2004).]

Posted by Lenny777 (Member # 5452) on :

My doctor told me "we don't have Lyme in our area" and about 9 months later I tested positive for Lyme. It pretty much everywhere. What we don't have everywhere are knowledgeable doctors.

Posted by Kara Tyson (Member # 939) on :

Morgan,

I dont know where you live in the SE. But as far as I know Lyme has been in every SE state well before 2 years ago.

The CDC Statistics are only those reported by their physicians who make antibodies. The numbers are not the same as diagnosed cases of the disease.

Posted by rosesisland2000 (Member # 2001) on :

I agree, I believe that you got the wrong information. Lyme is now and has been for quite some time all over the SE and further west and all over the USA, for that matter.

There are no "tick fences" anywhere in the USA and birds travel and drop sick ticks and animals travel far and wide carrying sick ticks.

You really need to not worry about what was then cause you need to take care of the now and future and get to a real LLMD who can treat you. Make sure that he is a member of ILADS or you will be just wasting your time and money and not to mention you life.

Rosemary

Posted by Morgan (Member # 5909) on :

I think the reason it's an issue of whether it's Lyme vs. STARI is that STARI does not show up on a Lyme test and, for now anyway, there is no test for STARI. That's one reason it's so frustrating. Even more frustrating is that almost no one in my state (N.C. by the way) has even heard of STARI. None of the wildlife people, none of the medical folks I know. And I had never heard of it either and I am in the wildlife field. So does one have to have a positive test result to treat for chronic Lyme or can/should that be done based on symptoms?

Thanks for letting me know that Lyme is all over. I had been repeatedly told that we do not yet have it in N.C. (except for cases that were contracted elsewhere).

I greatly appreciate you all taking the time to respond to my post. I am so torn on whether to take long-term antibiotics or not when I don't know for sure what I'm dealing with. Especially with other complicating health factors. Although CFIDS is not Lyme, I do empathize with you as there are so many similarities! Not the least of which being the lack of support from much of the medical community.

Thanks again for the responses and I look forward to any others that may post as well.

Thanks!

Morgan

Posted by Kara Tyson (Member # 939) on :

Hi Morgan,

Believe it or not, Lyme doesnt even show up on the Lyme test! False negatives are very common.

There are lots and lots of Lyme patients in NC (who were infected in NC). Some of them are on this board.

STARI is actually called Master's Disease.

Posted by cbb (Member # 788) on :

Hi Morgan,
Welcome to LymeNet. We'll do what we can to help you find the info you need.

South Carolinians are also being told that Lyme is not a problem here....but it is!
Same is true for North Carolina.

CDC statistics show that 1990-1999, there were 711 cases of Lyme disease reported for North Carolina. And it has been estimated that for every case reported, there are 10 cases that are not reported.

Whether it's called Lyme disease, Lyme-like illness, or STARI, the results are the same - a debillatating illness that will continue to get worse until treated with adequate doses of antibiotics.

The earlier the treatment, the better the results, but only if treatment is long enough & strong enough.

Lyme disease is a "clinical diagnosis" based on symptoms & exposure with test results being a part of the info considered.

When you developed the bulls eye rash 2 yrs ago, did a dr see it?

The bull's eye rash is diagnostic for Lyme, so you needed antibiotics at that time.

The same thing happened to me.
In the late 1970s or early 1980s, had a tick bite with very short attachment time (4-6 hrs max) & developed rash several days later.

Had not heard of Lyme so I did not see a dr.
Had no other symptoms for 5-15 yrs.
1992 - Clinical diagnosis of Lyme by a doctor in New Jersey.
On & off treatment for years. Then a few years ago, had positive tests for Co-infections: Bartonella & Babesiosis.
Since treating Co-infections & Lyme, I'm feeling better than I have in a long time.

If I didn't move around for awhile, I had a lot of stiffness & I had problems with my feet, but those symptoms have cleared up now.

My recommendation is that you be evaluated by a Lyme Literate Med Dr (LLMD) - ASAP.

There is one LLMD in NC - near Charlotte.
Where are you in North Carolina?

Posted by TheCrimeOfLyme (Member # 4019) on :

(Lyme is everywhere)

Posted by Morgan (Member # 5909) on :

I am 2 1/2 hours from Charlotte. I think I know the doctor you are referring to. My CFIDS specialist has been conferring with him about my case. At first there was concern that antibiotics this late in the game would push the spirochetes (?) into the brain to hide, but now they are leaning toward a progressive course of antibiotics. I would take something for a month. If I did not show improvement, I would take more. If I did, I would stop. Since I didn't know if the painful, stiff hands and the progressing stiff body were signs of Lyme/STARI, I didn't know whether to go with the antibiotics or not. And while I knew a fluid filled, swollen, hot knee was classic for Lyme, I wasn't sure it wasn't something else as well. My CFIDS severely limits me, making travel a near impossibility, which is why my doctor has been meeting with and conferring with the folks in Charlotte.

Does any of this sound reasonable to y'all?

Also, penicillin was mentioned for the 30 days, first step. I had always heard doxycycline was the antibiotic of choice.

I apologize for asking so many questions. I'm an "expert" on CFIDS, but this is all new to me.

Thanks for your continued input. Oh, someone asked about whether or not the doctor saw the rash. He did and he prescribed antibiotics. It wasn't his fault, it was mine. My best friend, who is a nurse, told me we don't have Lyme here and I believed her and did not take the antibiotics (I'm big into natural healing and didn't want to take them IF they weren't necessary.) Now I would kick myself, if my legs would bend! ;-)

Morgan

Posted by SuZ-Q (Member # 5903) on :

Hi Morgan,
I have written 2 lengthy replies and have gotten bumped off the net each time I try to submit, so I will keep it short and sweet.

Yes, your symptoms sound very much like Lyme and I truly empathise with your situation.
I think you are on the right course with your treatment. We have been working with LLMD near Charlotte for 7 months with good results for our 13 yr old daughter. She has been on variety of abx, but not penicillin. She has made very good progress. Had repeatedly tested negative prior to going there and had spent 5 and a half years boucing b/w specialistis who could not diagnose her. Good luck and keep us posted on your progress!

Posted by cbb (Member # 788) on :

Morgan,
Concerning the LLMD near Charlotte-
We don't give drs' names here unless they have given permission, but I was wondering if the Lyme Dr you mentioned is Dr J in Huntersville?

I am not one of his patients, but the ones I've talked with rarely start with "penicillin". I've been told he usually gives a combination of antibiotics.

I have heard that there is a "Lyme Dr" in Charlotte and he follows a different treatment protocol.
I don't know his name & don't know if he is a member of ILADS (International Lyme & Associated Diseases Society - Dr J is on the Board).

I was concerned about the 30 day trial treatment you may take. You said:
"If I did not show improvement, I would take more.
If I did, I would stop."

Did they say why you would stop treatment if you improved?

Go to www.ilads.org/burrascano_1102.htm
Print "Diag Hints & Treatment Guidelines..."
32 pages of excellent info on Lyme & Co-Infections, written by one of the very best LLMDs.

page 18: Treatment Categories
Early Localized- single erythema migrans (bulls eye rash, also called EM) with no constitutional symptoms:
Adults: oral therapy for 6 weeks

It's been 2 yrs since you had the bulls eye rash & you now have other symptoms, so you
have Disseminated Disease.
Means the disease has spread throughout the body.
Some say the spirochetes reach the brain very quickly after the tick bite.

Antibiotics do not push the spirochetes into the brain to hide. They find lots of places in the body that they can hide.

But in Disseminated Disease, the spirochetes are already in the brain & it's difficult to get antibiotics to cross the Blood Brain Barrier (BBB).

Go to www.ilads.org Print "Basic Info" - 3 pages of facts everyone should read.

Read #10: It says in part that "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..."

General consensus among LLMDs seems to be treat until there is NO ACTIVE disease (no symptoms) for 4 to 6 weeks.

I recommend that you educate yourself throughly about Tick-Borne Diseases (TBDs)- Lyme & Co-Infections.

"Links for new LymeNet members" http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Read & print "Bartonella Alert" info was compiled by VERY reliable person from 150-200 pages of info. http://flash.lymenet.org/ubb/Forum1/HTML/008362.html

There was a study in North Carolina that found that 85% of ticks tested were positive for Bartonella.
It was because of this study that I asked to be tested by Medical Diagnostic Lab in NJ www.mdlab.com
My test was positive & based on the symptom list, I never would have suspected I had it.

Another reliable lab is IGeneX in Calif. www.igenex.com

Also, I think most of my foot problems were caused by Babesiosis, but I have no proof of it. There are many strains of Babs. May be why my test at MedDiagLab was negative.

Bowen Lab in Florida found I had Babesiosis.
Symptoms were not severe enough to suspect this either. www.bowen.org
Click Lyme Research, Info, FAQ, & Research Update - lots of good info.

Thunder storm approaching.
Will check back later & see if there's anything else I need to add.

Posted by SuZ-Q (Member # 5903) on :

Hi Morgan
I just wanted to comment on the post from cbb. You have received some very good info.
We see Dr. J in Huntersville and have never been on penicillin;my daughter has been on Doxy, but was acually started on Biaxin in combo with ,I think, Plaquenil & Zithromax. Other drugs include, Minocyclene, Augmentin, Mepron,& Flagyl. Intitial tick bite occurred over 6 years ago and did not receive diagnosis until 7 months ago. A co-infection of Bartonella was also discovered through testing.

Posted by lymeyinok (Member # 5817) on :

Definately the ABSOLUTELY BEST thing you can do for yourself is see a LLMD immediately. Going to a reg. MD at this point is like calling a plumber to fix your car! I was bitten 2 yrs. ago, tested positive, then undertreated with abx and pronounced 'cured', only to have original symptoms plus some return this summer. Found a LLMD four hours away and it was Definatley worth the trip! I am now getting proper treatment and encouragement instead of being told I was false positive and needed testing for MS!

quote:
Originally posted by Morgan:
I live in the Southeast and found an attached tick on me two years ago. I developed the bullseye rash. Because I was told (correctly so) that we do not have Lyme in our state (yet), I did not take antibiotics. However, I later learned that while we do not have Lyme, we do have STARI (kissing cousins of Lyme). About 6 months ago, my right knee began filling with fluid, swelling, and getting hot. Now I am having a weird pain in both hands - they feel sore and bruised when I bend them, but are not swollen or hot. Now the toes of my left foot are doing the same. In addition, when I sit or lie down for any period of time, I am very stiff. What I need to know is - are these signs of Lyme? I know the swollen knee is, but what about the other?
To complicate matters, I have had CFIDS for 9 years. I also developed West Nile virus 10 months ago. So it is sometimes hard to know where one starts and the other leaves off. However, I do know the swollen knee is not a CFIDS symptom.
Any input would be greatly appreciated.
Morgan

Posted by SuZ-Q (Member # 5903) on :

Oops, I didn't mean to send that last post it wasn't finished. Please excuse my ineptitude - I am brand new at this.
Like cbb, I had some concerns about some of your communications with your CFIDs specialist and his with the Lyme doc. We are working with Dr. J in Huntersville(I did not realize there was another Lyme doc in the area prior to reading cbb's post) and penicillin has never been mentioned as an option. Of course all cases are different, but I am not sure if any of the current literature I have read recommends it. The meds prescribed for our daughter include Doxy(but she was not started on it), Plaquenil, Zithromax, Biaxin,
Augmentin, Flagyl, Minocyclene and Mepron. She usually takes three in combination and has had several one week drug vacations since starting seven months ago. She is also being treated for a much longer period of time than what you were told - we were told to expect another year of treatment at the 6 month mark. We have been very thankful for the treatment and diagnosis we have rec'd from our LLMD. The initial tick bite occurred in 1998 and at that time, she was hospitalized with treatment of IV rocephin followed by 30 days of Doxy(so don't beat yourself up for not taking abx at the time of initial infection, it didn't help in our case). Following the hospitalization and labs that came out negative for tick-borne illnesses we were sent to a rheumatologist who found nothing wrong, despite continued joint pain, rashes, elevated sed rate and positive ANA. In the following years we have seen numerous ``specialists'', none of whom could come up with a diagnosis. She was tested again for Lyme in 2003 and was again negative. She's seen infectious disease specialists, another rheumatologist, 2 allergists, an ENT who performed unnecessary surgery and several GP's and they have all shaken their heads in dismay. They have also said Lyme does not exist here(TN & VA- Ha!). We were referred to Dr. J by a relative with a Lymie friend in Charlotte and made our first trip in January. A clinical diagnosis was made first, but was later confirmed by lab tests ordered at the first visit. IgenX gave us our positive results. Our daughter has gone from being homebound from school at the time of diagnosis to resuming most of her previous activities at this time.
I was also concerned about the statement that abx could send Bb to hide in the brain. I have never heard this before. The bacteria almost certainly already resides there since it has been 2 years since your bite. It is my understanding that the Bb can penetrate the brain in a very short time(possibly minutes from the initial infection).

Also, please look up the sites recommended by cbb. I looked up the ones I had not previously read and found them very helpful. I especially appreciated the one on Bartonella - Thanks cbb, I have been looking for more info on Bartonella!
You may also want to look for a couple of books that have come highly recommended to me. They are, ``Everything You Need to Know About Lyme Disease and Other Tick-Borne Illnesses'' by K. Vanderhoof-Forschner and ``The 2002 Official Patient's Sourcebook on Lyme Disease.'' I found a copy of the first at our local library and found it informative. I've not yet found the other book, but am told it is a good resource. It can be ordered online at Amazon.com or Barnes and Noble.
I apologize for the length of this post and I hope I have not said too much about my LLMD, but I thought it may help in your treatment decision. Good luck and keep up your quest for knowledge ! Patients often have to be their own advocates, so the more knowledge you can acquire, the better off you will be.

Posted by Morgan (Member # 5909) on :

I have copied and am going to digest all the information and links everyone has been kind enough to recommend. After I have read everything and know enough to ask some intelligent questions, I will be back in touch. Thank you!

As for why penicillin, I'm totally not sure. And why a month and then decide whether to stop or not? My doctor said his contacts say that the latest recommendations are to do that. I know. Sounds kinda fishy to me, too. Wouldn't inadequate antibiotic treatment only make things worse?

I understand about the doctor name rule and will abide by it. I do think the doctor you are referring to is the same group my doctor is counseling with. I haven't seen the name spelled out, but it sounded like it could begin with that letter (or a G).

I feel so confused, but hopefully will know more after reading the information. Thanks to everyone again and I'll be in touch in a few days.

Morgan

Posted by cbb (Member # 788) on :

Morgan,
I understand how overwhelming all this can be. We'll help you any way we can.

If you will e-mail me, I will send you the website for Dr J in NC so you can see if this is the same dr.
At the top of my response, after the date, click the 2nd icon (letter) & you can e-mail me.

You're probably wondering why everyone here keeps insisting that people see a LLMD.
The vast majority of drs use info that differs from treatment protocols LLMDs have found necessary for long-lasting positive results.

It is so important to get adequate treatment as soon as possible. We don't want to see you wasting time, money, & energy with a dr who isn't using the most up-to-date info.

So many of us were mis-diagnosed and/or undertreated so our cases of Lyme have been much more serious. If we had had the opportunity to see LLMDs early in the disease, then our treatment would not have been so complicated.

To understand this better, read "Camp A & Camp B" at http://flash.lymenet.org/ubb/Forum1/HTML/018709.html

Also, check "Symptoms of LD". You may find you have symptoms that you didn't realize were Lyme. http://www.ocean-beach.com/_tick/tick_lymesymp.htm
(no spaces, 'underline' before & after ticks)

Please keep in touch.
We care!!

EDIT: Had a typo in "Symptoms...".
Will check on "Camp A & Camp B" link.
Another typo. Maybe I need to stop typing.

[This message has been edited by cbb (edited 11 July 2004).]

Posted by cbb (Member # 788) on :

SuZ-Q,
About the possible "Lyme Dr" in Charlotte - From what I've heard, he would not be a LLMD who is a member of ILADS.

The only person I know of who is going to him is not doing well AT ALL.
Almost NO improvement....very, VERY sick.

This Lyme patient was told that the dr is "a Lyme Dr".
Through a mutual friend, I have recommended others, but last I heard, they have not made a change.

Just wanted clear the record & be sure I wasn't starting a rumor about another LLMD in the area.

All the info available to me says there is only ONE LLMD in North & South Carolina.

Posted by crmc (Member # 4207) on :

We supposedly don't have Lyme here in Florida either. But I was bitten by ticks in FL and GA and I have Lyme and Babesia.

Please get to a good llmd and be sure to test for those co-infections that "are not a problem" here in the Southeast.

My initial Lyme tests came back negative. A good llmd will treat you based on symptoms, not test results alone.

Help with meds. http://www.freemedicineprogram.com/

ps lyme is everywhere!

------------------
Do unto others as you would have them do unto you.

Posted by SuZ-Q (Member # 5903) on :

Morgan,
I have been trying to think of a way to tell you Dr. J's web address, but since his name is included I wasn't sure how(since I am a newbie).
I hope you will contact cbb to get the address. We read the info regarding Lyme on his site prior to making our first appointment and found it to be very thorough and informative. It was actually pivotal in our decision to seek treatment there. I think you will be impressed also.

Posted by Morgan (Member # 5909) on :

I did e-mail ccb for the info. Thank you. And I will get busy reading all the links information. Thank EVERYONE for their kindness in helping me get the help I need. I'll be in touch soon and if anyone else wants to add some info., please do.

Morgan

Posted by cbb (Member # 788) on :

Link to website is on its way to you.

You're wise to read & learn all you can.
It's so much better when a patient and doctor can work together - therapeutic alliance.
An informed patient learns what the dr needs to be told & understands what the doctor is talking about.

Did I suggest starting a Lyme notebook or file? Record dates & changes in how you feel, antibiotics (dose & length of time) you take & changes during treatment.
Kinda like a Daily Medical Journal.
I didn't know to do this. Wish I had!!

Keep all Lyme info together, in writing, & it will make life easier.

Posted by Morgan (Member # 5909) on :

Dear ccb,

My e-mail has been down all day today so if you sent me something, I have not had access to it. Just wanted you to know I wasn't ignoring it. Hope it's up and running soon. Must be the carrier because I am doing fine elsewhere.

Later!

Morgan

Posted by cbb (Member # 788) on :

If it doesn't arrive, let me know & I'll send it again.
Sorry you're having problems with it.

Posted by Morgan (Member # 5909) on :

I FINALLY got my e-mail up and running and will check out the website you sent me. Thank you.

I've been reading the links everyone sent me and am stunned to learn that the symptoms of CFIDS and chronic Lyme are nearly identical! While I knew they were "similar," I had no clue they were almost identical. This is stunning news to me.

Morgan

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