LymeNet Flash: Symptom questions

This is topic Symptom questions in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/26468

Posted by sharonliebs (Member # 5948) on :

Hi,

I have a few questions/concerns and hope you all can help. Last month I started getting very bad pains in my knees and shins. This was accompanied by a slightly sore neck and headache. I was getting routine blood work done and asked the doctor to test for lyme also. I am a bird watcher and have been in tick areas all spring and summer. My first test came back positive (1.22) and the doctor's secretary said the Western blot was negative. I went to another doctor for a second opinion because my neck pain came back and is currently extremely stiff and painful. I am also finding it very hard to swallow. This doctor said my original Western Blot did have one positive band and sent me for new tests. I am now waiting for the results, and will more than likely get them on Monday. In the meantime I have a stiff painful neck, sore throat, fatigue, strange swelling on one side of my ankles, and my brother has noticed I have been using the wrong verb tense when speaking. The latter may be because I am so stressed about this I can't even think straight. Hopefully that is what it is. Anyway, does this sound like lyme? My ankle swelling is NOT accompanied by pain and the doctor said it was the first time he had seen swelling like mine (it is concentrated on one area of the ankles). Has anyone ever heard of that before? Please let me know. I'm very scared and worried. Thanks!

Posted by SC (Member # 5767) on :

Hello, welcome to Lymenet! Sorry to hear that you are ill but you have come to the right place!

I am relatively new to Lyme, just diagnosed a little over a month ago, so I can not answer many of your questions.

Personally I would find it safe to say that you have Lyme. Some of your symptoms sound familiar to me. The symptoms are extremely varried and it affects each person differently.

My suggestion is that you find a good Lyme Literate Doctor (known as a LLMD here at Lymenet) Most doctors know very little about the diagnosis and treatment of Lyme.

I would suggest that you post in the seeking a doctor section. Personally I would recommend Dr. C in Missouri.

He is absolutely wonderful. My family drives about 10 hours to see him. See DrCharlesCrist.com for more info.

Take heart and try not to be too scared or worried. I fully understand how terrifying this disease can be. You have found an excellent resource for assistance. The people here are wonderful and extremely helpful.

Others will post that will be of more assistance to you. Sorry I could not help more.

Posted by HaplyCarlessdave (Member # 413) on :

I'm also a birder, and got lyme, ehrlichia, and babesia from several ticks I got at brigantine, NJ. Lyme is very widespread, but the co-infections are a little less so. These infections, also carried by the same ticks that commonly carry lyme disease, make the lyme much nastier. Be sure to consider this possibility if you have trouble kicking it.
But you should start treatment asap for the lyme. Your symptoms are classic. It took me 6 months to start testing positive- by that time I was one sick pup! Get on the antibiotics as soon as possible. If your infection is recent, which seems likely, from your symptom description, time is of the essence.
Lyme also requires HIGHER DOSES of antibiotics than are sufficient and commonly prescribed for many diseases. I had to take very high doses of several antibiotics (abx, for short) at once.
If you have babesia, you may have to also take "antimalarial" drugs- atovaquone and azithromycin, atovaquone and proguinil, quinine and clindamycin, ans/or artimesia anua and garlic (chinese herbal treatment, which is very effective)-- the organism which causes babesia is susceptible to treatments usually given for malaria). I took atovaquone and proguinil in a formula called 'malarone', as well as artimesia anua and garlic, for babesia )"babs" for short, here on this site).
Ehrlichia is susceptible to tetracyclines, including doxycycline, which is often the first abx given (albeit in too low a dose, all too often).
As others have said, it is essential to finf a "real lyme doc-- a "lyme literate doc", or "LLMD" as we acronyze it here.
Another co-infection, which I did not have, that has been knownto be carried by ticks, is, or is similar to, "cat scratch fever", or Bartonella. I am not sure what it is treated with, but if you have it you may need to take yet something more, for that.
For a while I was taking 20 pills a day or more! I was on pretty heavy treatment for well over 2 years.
There are certain sequences of drugs that are given to minimize chances of relapse- you will see more about elsewhere on this site- lyme bacteria coalesce into structures called "cysts", or "cystic forms" which are resistant to many antibiotics. You will need special "cyst-busting" antibiotics near the end of your treatment to attack these.
If you can get Intravenous antibiotics ("i.v.") you may speed the process a litle , as well as protect your GI tract somewhat, but you will still need to follow up with orals to insure against relapse.
Another extremely important component of lyme treatment is acidophilus, and in some cases, anti yeast medications-- Yeast can result if you are on very high doses of abx for a long time.
Much of my basic experience, up to when I was almost well avd in the last stages of treatment, is recorded
here!...,
As well as in the archives of this discussion board, I suppose.
Good luck in getting the best possible treatment.
DaveS

[This message has been edited by HaplyCarlessdave (edited 18 July 2004).]

Posted by RECIPEGIRL (Member # 5884) on :

Hi Sharon,

I'm also new to the site, but you sound like you have Lyme. Sorry you feel so crummy.

The key to catching this quickly is to find a LLMD immediately. Even if those tests come back negative, you can still have a raging infection.

An LLMD will diagnose you according to your symptoms. Even Lyme tests ordered by an LLMD are not 100% accurate. The LLMD knows this.

He will also examine you for co-infections & do appropriate testing for those, too.

That's why you need to be seen right away. You will have to take charge of your health.

Do not let your non-Lyme doctor drag you down by telling you it's stress or something. Use all your energy to find an LLMD. Go to the "Seeking Doctor" heading on the front page of this website.

Do not let anyone force steroids on you to take down inflammation. This will depress your immune system so badly that you'll be sicker than ever and harder to cure. Steroids are poison for Lyme patients.

Below is the site for Dr. Burrascano's Treatment Guidelines. (You might print the entire thing out & review the symptom list & antibiotic list.)
http://www.ilads.org/burrascano_1102.htm

(Just type in Dr. Burrascano's Treatment Guidelines in any search engine & you'll find them easily.)

You need an LLMD to examine you, especially with a stiff neck & difficulty swallowing. You really sound very acutely ill.

Get the right diagnosis and the right treatment-------fast!

Be strong on Monday if they dismiss your symptoms & don't panic. Just find an LLMD.

I hope some more experienced folks can provide better answers for you.
Take Care,
Jan

[This message has been edited by RECIPEGIRL (edited 18 July 2004).]

Posted by RECIPEGIRL (Member # 5884) on :

Sharon,
Another source for locating a Lyme doctor is to contact Kim Uffleman at the Lyme Disease Association.

Her email address is: [email protected]

Please let her know your town, county & state. She will try to reply with up to 4 LLMDs that are close to you. Put the name of your state in the subject line of the e-mail.

Or, call them toll free (1-888-366-6611 & request a LLMD referral.

Hope that helps---we all want you to have the best care possible.
Jan

Posted by Amareo (Member # 1454) on :

Hey...sorry to hear about all this. Unfortunately, it does sound a lot like lyme disease. Fortunately, it sounds like this has all happened recently though (??)...that's good. I think it would be a really good idea for you to find an LLMD (lyme-literate doctor/or lyme specialist) even after these tests come back. If they come back positive, I would take the raw data to an LLMD and try to get in ASAP. If they're negative, I'd go to an LLMD and see what they say, they might re-test you. Sometimes regular doctors don't send the tests off to labs that know how to test for lyme disease, so that alone could affect the accuracy of the tests. There are a few very specific labs that are very good at detecting lyme disease, and your LLMD should send off tests to those labs.

Another good reason to find an LLMD....if you do have lyme disease, it sounds like you've caught it fairly early....so it should be more easily treated, but if it isn't properly and completely treated, you could end up with late stage lyme disease, which IS more difficult to treat, and can cause a lot of health issues. An LLMD will know how to treat you to ensure that the disease is completely gone. A lot of regular doctors will say that 2 to 3 weeks of antibiotics is adequate to treat (cure) early-stage lyme disease, but thats not true in all cases, and an LLMD will probably know best what is adequate for each individual.

I hope I'm not scaring you, and in fact you may not have lyme disease at all, but, it does sound (to me) pretty likely. So if you do, these are good things to know so you hopefully won't end up going late-stage.

My symptoms (at the onset of the disease when I was 6) were: stiff neck, headache, fatigue, knee and ankle pain, general body rash (not the bulls-eye rash, more like scarlet fever/rheumatic fever type of body rash), loss of appetite, vomiting, spiking fevers (104-106). I had lyme disease, along with two co-infections called babesiosis and ehrlichiosis, so I can't say all of those symptoms were strictly from lyme disease, we don't know how many of them overlapped.

Well, good luck and I hope you find some answers!! God bless!!

------------------
Lishka

[This message has been edited by Amareo (edited 18 July 2004).]

Posted by Rita on :

It does sound like tickborne diseases. Find a LLMD ASAP.

Posted by lla2 (Member # 2364) on :

Have them double check you for bartonella..with the shin pain , headaches , sore painful neck, etc..ok? a coinfection that has similiar symtoms as babs, but won't go away after babesia treatment....

shin pain was a biggie for me with bartonella..

Lisa

Posted by mlkeen (Member # 1260) on :

My llmd believes you can have babs and bart with positive blood work. See if you cn be treated based on symptoms.

Posted by Beverly (Member # 1271) on :

Hi Sharon,

Welcome to LymeNet. I'm sorry for what you are going through.

I agree with the above lymenetters, find a LLMD for a proper evaluation. It sure sounds to me like lyme and/or co-infection is a possibility.

I have had swelling in my ankles but it's usually the whole ankle, but could be seen more on the outside. I also have had shin pain, joint pains, stiff neck etc. All of your symptoms sounds very suspicious to me for a tick borne illness.

I know it's very scary , but lyme or other tick bornes disease are treatable. Hang in there ok?

Keep us posted.

[This message has been edited by Beverly (edited 18 July 2004).]