Don't get me started on Texas, lol. I tried complaining to the medical board about being misdiagnosed, being over medicated by drugs I didn't even need and almost dying, they basically laughed in my face. You have to save your strength to fight the battle you will win which is getting better.
Sometimes we rant and vent because it is so frustrating for us having been where you are but not having a forum like this to go to and getting misdiagnosed over and over.
Keep us posted.
Welcome -- sorry to hear all this.
I'll keep this reply brief, can go into more detailed comments later.
First question: is your current doc (the LLMD) having your Lyme tests run through IGeneX labs using their PCR methodology, or is he running them as Western blot/ELISA?
He wants them done at Lab Corp and marked off western blot, bab,Ehrlic and Bart cd4A cd57 vit D B12 b6 CBC
The last one from the ID doc was the
igg western blot neg.
igg bands kDa no bands detected
igm bands kDa no bands
That's what I was guessing.
Okay, I'm not medically trained, so take this for what it's worth .... but I have been through Lyme and babesia and it took me 20+ docs to finally figure out what was going on, so I've got some understanding of the disarray the medical community is in.
Your doc may call himself an LLMD, but it's a term with no qualifications or entrance exams, so it's very possible to end up with a doc who truly believes in his approach as the right one, but is not doing what the more advanced thinkers are.
My LLMD, who is very well known in the field, used not only the Western blot/ELISA tests through LabCorp, but also the Lyme PCR test through IGeneX Labs. Your doc appears to be relying on an antibiotic challenge (to stir up your immune system to make antibodies that the Wblot/ELISA test can then show). That's good. The problem is that the test is STILL not very good, and worse, some years ago, the bands (meaning markers) on the test were limited to exclude some important bands that react ONLY to Lyme. For several reasons, then, the Wblot and ELISA tests are not terribly reliable.
Mainstream docs do not favor the IGeneX PCR test for reason I do not understand; I suspect they think WBlot/ELISA are good enough, so why change. However, because the WBlot/ELISA tests are so dodgy, having a PCR test run is something a 'true' LLMD would almost certainly do.
The PCR test looks not for your immune system reaction to Lyme bacteria (which trails off after a period of time), but looks instead of bits of Lyme DNA (that is, direct evidence, not indirect evidence) in your blood.
It is good that your doc is testing for the other possible co-infections, and also looking at the CD57, for example, but without the IGeneX PCR test, I would be dubious.
There is a lot of nasty politics going on in the medical community, and lots of rude things are said about IGeneX, but so far no one has shown me anything that says IGeneX is wrong. My LLMD used both Wblot/ELISA and the IGeneX PCR test.
In your situation, I would go ahead and have the tests done, get paper copies of ALL the tests you have had run there (and start a binder, so you personally always have copies), and take them quietly to another Lyme doc for a second opinion. No need to tell your current doc you are doing that, but until Obamacare kicks in, this is still a free country and we can go to the doc of our choice ... except in states that do not grant the docs freedom of conscience to practice as they see fit, such as Texas -- you can still SEE a doc there, but they are under direction from the state medical board not to treat Lyme except by IDSA standards, so I read.
If you are in Texas or other states with restrictions on docs, it's still possible to find help.
You can email to
contact [at] ILADS [dot] org
and tell them your state/area, and they will send you names of member LLMDs, tho as you are finding, "LLMD" has no fixed meaning. However, ILADS membership is a good indicator.
You can also simply google/search for
LLMD Kansas City
or wherever you are or can get to, and see what you find on message boards. If you want to let us know what geographic area you live in, we might have personal experience with LLMDs there that could help you.
Sorry to be a downer, but I really really would find a doc who thinks bigger thoughts. Let us know how we can help. Best wishes --
and PS, given your other medical challenges, if you can find an LLMD who is also a hematologist, that might be a bonus. I know of one, but depends on where you are if that's doable.
If you were recently bit it does show up by any lab ,that happened to my ex husband but if you don't know exactly when you were bit and given everything else, ditto Jackie on everything.
thanks so much. I did ask the ID Dr. about the PCR., he ran the western. he is convinced it is the Hep C. i have not found anyone yet to have the sudden seizure like pain i go through who has hep C
If it is Lyme
I suspect that i may have has this a long time. i fish hike garden, use DEET.. just swat off the bugs.. 2 years ago i had a little bug like a poppy seed on my ankle and brushed it off, left a little blood spot , last year a tic on my back and never got a rash or fever..
odd how I got the joint pain when hubby was ending his doxy last year.
all the conspiracy theories.. sperm? not to be crude.. but I swallow.. ha ha.
I had a Dr. say it was carpel tunnel in my wrists..
i can't have carpel tunnel in my whole body! and it moves around. what a dummy.
So it is a start. this LLMD i will try and there is another about 1 1/2 hrs away to see also.
i will go with the Lab Corp a few weeks into my ceftin
i live in the mountains in New England for 20 years. I went to mexico in 2008
IDK but i will keep trying.
I do not think i have fibromyalgia.
My physical therapist sees a lot of lyme and fibro people and she thinks it is lyme.
you are so helpfull.
thanks as i said i have been searching for an answer for over 6 months and sometimes i think i need a shot of whisky and a bullet to bight on.!
the pain .. the unknowing creates anxiety. my hubby is an angel. he is so worried.
now to take a break from the health crap and try to get this stabbing pain in my shoulder to go away.
Advill anyone? not much help.
be well. get better all of us.
We're glad to help ... we've all been or are where you are, or somewhere on the path in between.
For the aching, try magnesium supplements. The standard diet is supposedly low in Mg already, and the kicker is that Lyme bacteria use it up in reproduction. I take it still, and it's not only very soothing, but I just feel better generally. I take a brand that combines Mg citrate, aspartate and orotate in one capsule (400mg 2xday), and have also taken Mg malate in the past. The junkier brands of Mg didn't work so well for me. Hard to say why, just didn't suit my metabolism, so experiment. Be sure to tell the doc you are taking Mg supps tho, so it can be factored in.
Lots of docs will grill you about having seen a tick and a circular rash, because supposedly X% of those with Lyme had rash and tick. You'd think these docs would take a statistics class sometime, because if you are reluctant to diagnose a patient with Lyme because there was no tick/rash, then the number of diagnosed cases of Lyme will go down, and the number of those with Lyme who DO present with tick/rash will go up ... because Lyme won't be diagnosed without rick/rash. The vicious circle continues: illness with no tick/no rash = no Lyme. Self-fulfilling prophecy.
I never saw a tick or a rash at all, and looking back may have been infected in Europe a few years before getting really sick after a trip back East. I'll never know, and many of us don't.
And don't get me started on fibromyalgia. Even the TV commercials are careful to say it is 'thought to be caused by overactive nerve fibers' or some such BS. Thought to be caused? Overactive nerves? How's about an INFECTION??!!
But truly, Lyme is everywhere and spreading fast, and it often brings with it bart, babs, etc., so I will give points to your doc for testing for those. He just has the traditional big blind spot about Lyme.
Magnesium. Give it a shot! Keep us posted --
Your doc sounds like he's already got the diagnosis in mind and is just looking for confirmation.
and PS, the Igenex website has a lot of information on it about their testing etc. It's scientific-y, but accessible and reasonably understandable to a layman like me. Check it out.
yep on the mag, been taking that for years with calcium, added vit d.last fall.
i eat ok, no junk food. lots of veggies fruit grains..
i am 50 yo.
it has been a long yer living with pain Dr.'s and fatigue. i break down then pull myself back up somehow.
will start the ceftin tomorrow and make appointment with lab corp to do my test in 2 weeks.
if it comes back positive and 2 dR.s said i definitely do not have lyme, can i sue them for putting me through all this when they should have seen the signs? I live where there is a lot of lyme. although the numbers reported are low
what is THAT all about?
if not lyme i will have to ask for an MRI i guess.
If your docs don't work out, look for another one. There are so many subtle things about Lyme and the various co-infections that it really does take a doc to know which way to go next.
MRIs are not particularly useful in diagnosing Lyme .... nonLLMDs will often have patients get an MRI, but for the purpose of diagnosing or ruling out multiple sclerosis (MS). Others here have been through that, and it seems that what can happen is that the MRI results show fuzzy places that nonLLMDs interpret as MS or possible MS, which leads them further away from a serious differential diagnosis of Lyme vs MS.
So ... from what I hear from those who have been down that path, an MRI will show fuzzy spots that may be Lyme or may be MS, but since LLMDs don't tend to use MRIs, it really doesn't get you very far when a nonLLMD runs a positive MRI ... he starts thinking MS instead, since Lyme isn't on his radar.
HOWEVER the good news is that there is another test called a SPECT scan that shows areas of low blood flow in the brain, which are specific to the swelling that Lyme causes ... so it's a very strong indicator of Lyme that cannot be confused with MS. But nonLLMDs don't do SPECT scans.
So ... you still need to find an LLMD. IMHO. Hang in there -- you've come this far ... keep going!
Sorry to hear about your ordeal. If it does end up being Lyme, you and 10's of thousands of others would also like to sue the doctors who missed it. It is shameful and disgusting how pride and arrogance has kept the medical establishment from recognizing Lyme for what it is and educating doctors on how to diagnose and treat it. But I digress..
I would really encourage you to get a Western Blot and PCR test at IGeneX. Other labs use mass produced test kits based on one strain of Borrelia, and Labcorp is one of those labs that misses lots of cases. IGeneX uses two strains and so they are more likely to find matching antibodies.
Some labs don't even look at bands that aren't part of the CDC surveillance criteria. You could show Lyme specific antibodies, which would be diagnostically positive, but those labs would still say "Negative. No bands." IGeneX shows more relevant bands. I believe Stonybrook and Clongen are good alternative labs. (The LymeMD's blog talks about these labs.)
It is very important that you test at one of these labs (preferably IGeneX) after your antibiotic challenge. You can order the IGeneX test kit yourself, and then bring the authorization with you to the appointment. Let him/her know that this is a really important second opinion that you want, and you have to pay for it yourself anyway. (This is true...but you can submit it to your insurance company afterwards for out-of-network reimbursement.). I did this and it was worth every penny. I had already tested negative twice and I was getting desperate.
I find it very confusing why so many doctors will contort and twist another disease definition to try to explain mysterious symptoms, all the while insisting it isn't Lyme. This makes no sense to me, and it really makes me wonder about the intellectual curiosity (or lack thereof) of any doctor who does it. I think it is ridiculous to think Hep C would cause crippling stabbing pain, bladder problems, et.al. However, it is easy for me to believe that Lyme can cause them as they are known symptoms! Sigh.
Your ankle and shin pain is consistent with a coinfection of Bartonella. Make sure you get tested at IGeneX for that, too. Bartonella can be nasty all by itself, and can take months to treat. I did the whole coinfection panel at IGeneX because I was worried about missing a coinfection. I am glad I did, as I was sure I had Babesia, which I don't, and I tested positive for Bartonella. The only signs that I had of Bart were predominantly neuro and GI symptoms of Lyme, and anxiety.
Given your existing and serious viruses, I would encourage you to pursue Lyme Disease very persistently until you are absolutely positive you don't have it or you get a diagnosis and start treatment. Lyme is immunosuppressive and that would be bad news for someone who needs a robust immune system to keep those viruses in check!
P.S. Have you seen Burrascano's checklist? His whole document is very educational.
Also, scroll down and find my recent post with a link to a Bartonella checklist. You can compare your symptoms to these. Some people only have a few symptoms. Others have many.