I am confused. After many tests to figure out what is wrong with me, my GP did a Lyme test and said it was pos. She put me on 500mg penicillin twice per day. (is this normal?) All I have been reading said that I should be on doxy or ammox, so I decided to go to an ID dr. He said my Lyme test was neg and according to CDC, I only have one marker pos. He said that bc I had a large circular rash in July and I live by ticks he suspected that I "might" have lyme despite the test being negative. He said that because my head and neck hurt me so badly, he wants to do a spinal tap and test the fluid. If it's negative, there is nothing he can do. If it is positive, he will agree to treat me. What does this mean? Do I have it or not? I'm so upset by all of this. Here is a bit of information about my case:
Blood test: Lyme AB WB RFLX Lyme IGG IGM 2.16
IGM P23 Present SED rate 8
Symptoms:
July 2012 - red, round �spider bite� silver-dollar sized Chronic fatigue Itchy rash (small bumps) on chest and back Persistent low-grade fever Headaches Sore neck Achy joints Shortness of breath Anxiety Brain fog Sound sensitivity
Can anyone out there help me? Cara
Posted by OtterJ (Member # 30701) on :
Lyme spiro's are difficult to culture out of spinal fluid. Don't do it! Is your doc a "lyme literate doctor? I wouldn't treat with a G.P. I would let him or her do the initial test and then ask the people here for a recommendation. This is important. I had a large circular rash after my tick bite and my testing lab, Stonybrook, told my infectious disease doc that a bull's eye rash was "more indicative of lyme disease than any serology." Your shortness of breath sounds like it could be a piroplasm like bartonella and/or babesia. You need to be tested for these also.
Posted by jessicabooklover (Member # 39427) on :
I would absolutely suspect that you have lyme and/or several coinfections based on the information you have presented. Please do not let a GP or an infectious disease dr treat you for this.
Please go to Seeking A Doctor on the board and look for a LLMD in your area. It is critically important to treat this as expeditiously and throughly as possible, and in my opinion and based on my experience the only way to do that is to see a LLMD as soon as possible.
I wish you nothing but the best. Feel free to PM me if you have some questions. I know this can be overwhelming. All the best to you. Jess.
Posted by Cara C (Member # 39784) on :
Thank you Otter!
I was also feeling very hesitant to let this dr do the spinal fluid. I just don't know where to turn now. I am willing to travel anywhere to get help. If it's not Lyme, I just need to figure out what it is.
Cara
Posted by Keebler (Member # 12673) on :
- ID doctor. Not well educated enough for you.
Spinal Tap. No. You do not need it and it will likely be negative, denying you treatment.
Find a LLMD.
There are a few states where it's much more difficult. You don't say where you live but do find your local lyme support groups. -
Posted by seibertneurolyme (Member # 6416) on :
Sorry you sre sick but so glad you found this website.
Don't ever let any doctor tell you you are not sick. You know what symptoms you are having and they are not symptoms that a normal healthy person has.
Unfortunately lyme and other tickborne diseases are very controversial. And I.D. docs are at the center of that controversy.
No one here can say with 100% certainty that you have lyme, but the odds are very high that you do. And you do need to be aware that ticks carry multiple infections and it is highly likely that you have more than just lyme. That is why you need an LLMD (lyme literate medical doctor) that understands all of the different coinfections with their overlapping symptoms.
You have caught your infection relatively quickly which should make it easier to treat -- but only if you get to a knowledgeable doc.
Please post in the seeking part of this forum for help in locating an LLMD.
Spinal taps are not very accurate for proving lyme disease. And even if you got lucky and got a positive test the I.D. doc would only give you 1 or 2 months of antibiotics which probably would not be enough.
Bea Seibert
Posted by Keebler (Member # 12673) on :
- You had the rash (classic positive is the actual rash when it appears) . . . you have tests that point to lyme. You have symptoms. Yes, it looks like you have lyme. Sorry.
You do not need any other lyme tests. However, the detail about "why no spinal tap" is here, as are a few other things of importance and perspective:
Reasons for False Negative (Seronegative) Test Results in Lyme Disease
=============================
Why an ID doctor cannot help (with the very, very rare exception of the one or two in the U.S. who may be ILADS educated, most will discount lyme and discount the patient).
What ILADS is & WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
[ 01-03-2013, 07:40 PM: Message edited by: Keebler ]
Posted by Cara C (Member # 39784) on :
Oh my goodness. I am so thankful for all of your words!
I already posted for a LLMD in the Chicago area and there are none in Illinois. I am willing to travel anywhere. I will post again for all of the Midwest or US for that matter.
Thank you again! I am so glad that I found this website.
Cara
Posted by sparkle7 (Member # 10397) on :
Lyme diagnosis is very difficult. I hope you can find someone to help you. Always double check when you get advice on how to treat "Lyme". It's very confusing. Most doctors do not know how to deal with this illness. The tests are not accurate.
Many times, doctors are looking to cover themselves from any legal issues. It doesn't seem to be in your best interest to do a spinal tap. Good luck!
Posted by Keebler (Member # 12673) on :
- You had the rash, and have profound symptoms, some are classic to lyme.
You really did not need any test to "prove" lyme in addition to that.
Beyond the positive band on the test which certainly shines a light on what any good doctor should have already known (but they don't), you do not need another test for lyme.
Still, you need to be assessed for the full range of tick-borne infections, and assessed for treatment.
Be sure to log on so you can access your private messages. I sent contact detail in a state adjoining yours, about a four hour drive. -
Posted by Keebler (Member # 12673) on :
- To help along the way:
Before even starting any antibiotics, PROBIOTICS need to be in place, take a couple hours away from abx (antibiotics), both directions of the clock.
Liver support is also vital to get in place for reasons explained here:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not really natural at all); -
Posted by Cara C (Member # 39784) on :
Thank you Keebler!
Posted by Catgirl (Member # 31149) on :
Cara, I've had two lyme docs tell me that band 23 only shows up with lyme--nothing else. So unfortunately, it looks like you have it.
I would only see a lyme literate specialist for lyme (LLMD, or LLNP, LLPA, or LLND). You can go to www.lymediseaseassociation.org and they will email you some names. Be sure to select one who is ILADS affiliated (International Lyme and Associated Diseases Society). These specialists are cutting edge. No one else is, IMO.
Unfortunately, they are usually booked for months out. You can ask to be put on their cancellation lists though. I was able to be seen by one within three days of calling due to someone cancelling. I dropped everything I was doing so I wouldn't miss the opportunity of getting proper treatment.
Also, there is a really good book worth reading: Cure Unknown. It explains a lot.
Posted by TF (Member # 14183) on :
I strongly suggest that you read and STUDY the Burrascano lyme treatment guidelines found here:
You will see that he does NOT recommend getting the spinal tap.
Before I knew better, I went to a neurologist and he ordered a spinal tap (it's what they do) and it came back negative. So, he didn't care that I had a positive lyme test. He just went by the spinal tap. No treatment for me. He said I didn't have lyme.
So, skip all of these doctors who don't know anything about lyme (but think they do) and go to a doctor who treats only lyme patients and nothing else. He won't order any spinal tap on you, I am sure. Instead, you will get lyme treatment.
It is best to get personal recommendations on lyme doctors, so keep posting in the Seeking a Doctor forum. When you get names from some of these lyme organizations, it just means that the doctor registered with the organization and said he treats lyme. Don't assume that the organization knows anything about these doctors or is saying that the doctor is any good.
Posted by derk diggler (Member # 31903) on :
missery loves company!!! everbody here will convince u you have lyme,,,, good luck
Posted by Keebler (Member # 12673) on :
- And some seem to come here to just harass or demean those who are in search of the truth.
Facts of this case: the unique rash; positive test markers; classic & profound symptoms
Find the best ILADS educated LL doctor you can so you have the best authority for assessment on all levels. -
Posted by n.northernlights (Member # 17934) on :
The rash is diagnostic, especially toghether with your symptoms.
The tests only test for antibodies, but since Lyme moves into white blood cells and other tissue, it evades the immune system and only the initial antibodies tend to show up, and they even get weaker since they wash out.
Not so much point in testing more since your test is positive anyway.
Maybe you want to consider strong herbs instead of months on antibiotics?
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,