You have a lot going on -- sorry to hear you have been and are so ill. I have some comments but can't write them at the moment, will post later today.
Hang in there, I know you are suffering. J
Rocky -- here's a more complete response, but please remember I'm not medically trained and am just a Lyme patient like you. So for what my comments are worth, here are some comments on your post above:
========this post is long and will be split into two parts. this is part one.=========
You say: "Can someone please help me. I've had severe chronic symptoms consisting of complete cognitive dysfunction (memory loss, no concentration, slowed thinking etc), muscle twitching, unreal/woozy feeling, and dizziness upon standing since my onset with severe headaches in July 2009. Over a year ago."
Comment: These symptoms are not uncommon in Lyme and/or other tickborne diseases that I am familiar with.
"I had recently returned from a 6 week trip all over europe. I did a lot of outdoor activities including hiking."
Comment: Your doc who said the tests here might not pick up Euro Lyme is correct, from what I read. Also there are perhaps ~100 US Lyme strains and not all are testable.
"I currently live in Texas."
Comment: Texas has Lyme too.
"I have gone undiagnosed and my symptoms don't really fluctuate. After about 2 months from the onset I sought out a lyme literate doctor in Texas because I had tested positive for lyme with the elisa but negative on western blot. I also tested once negative and once equivocal before the positive elisa. But never any western blot positive."
Comment: The tests are notoriously inaccurate, and supposed to be interpreted in view of your symptoms, not in spite of your symptoms.
"A circular rash developed about 5 weeks after symptoms started on my back that lasted about 4 weeks too, but it was after a massage so I dunno if it was from a bite or maybe some kind of reaction to the massage oil.The rash was splotchy with a lot of red pimples in it."
Comment: Not everyone gets a Lyme rash (I didn't), so having one is something that your MDs should take into account.
"Also, no other doctor could tell me what was going on."
Comment: Unfortunately, this isn't uncommon.
"The LLMD tested through igenex and the results were as follows:
Igenex IGM Results:
18 kDa: -
22 kDa: -
23-25 kDa: -
28 kDa: -
30 kDa: +
31 KDa: IND
34 kDa: -
39 kDa: IND
41 kDa: +
45 kDa: -
58 kDa: +
66 kDa: _
73 kDa: -
83-93 kDa: -
So three positive bands and two IND bands. I dunno what those indeterminate bands really mean. I've heard they're weak positives but who knows."
Comment: I have also heard that indeterminate bands are weak positives, otherwise they'd be minuses. Here are the explanations for the bands you tested + or IND on:
Igenex IgM test [which are the first immune system reactions to an infection]:
30: unknown what it is, but probably OspA [outer surface protein A] from Borrelia burgdorferi [Bb] (which is the Lyme bacterium). This band is common in Europe but also cross reacts with various viruses.
31: OspA, which is specific for Bb, meaning that if there is OspA, then there is Bb present
39: Specific for Bb
IgG test (which the immune system produces later in an infection):
41: Usually the first to appear after an infection, reacts with all spirochetes [spiral-shaped bacteria], of which Bb is one, so this could be Bb
"The results were negative for igenex as well as CDC. Also, was tested for all co-infections at Igenex and they were negative."
Comment: Interpretations must be made in view of your symptoms. The tests are far from perfect.
"The LLMD also did aCD8-CD57+ Lymphs tests at LabCorp in which the results were: 50 (reference range 60-360). Based off my history and the test results my LLMD wanted to try some antibiotics because he said the CD57 test was indicative of chronic lyme. So I tried 2 1/2 months of doxy and ceftin combo. I felt no change in my symptoms so he tried Cipro for 2 weeks which didn't do anything either."
Comment: It can take quite a while to get a longtime infection to respond, and it must be the right meds.
Were you tested for co-infections often carried by the Lyme ticks -- bartonella, Babesiosis, Ehrlichiosis, and a couple more? They need separate tests from Lyme, and they don't all respond to the same drugs used for Lyme.
"I was also seeing some infectious disease doctors at the time who said I definitely did not have lyme and tested me via Quest and all test results were negative. This was after antibiotic treatment."
Comment: The Infectious Disease Society of America (IDSA) has for decades clung to the position that Lyme is hard to get and easy to cure. Some senior MDs in the IDSA long ago staked their careers on that position, and they have refused to budge. Many practicing MDs who don't have time to study the controversy rely on the IDSA positions. The divide between the IDSA and the group ILADS (International Lyme and Associated Diseases) is huge, and LLMDs tend to follow at least some of ILADS positions. You can find 'Treatment Guidelines' by Joseph Burrascano MD on the ILADS [dot] org website under the tab 'About Lyme', if you are interested in reading them and have the energy to do so. They are written for MDs, so don't get overwhelmed.
I too have been blown off by more than one ID [infectious disease] doc. They have their heads in the sand and lack the humility to understand they do not know all of Mother Nature's tricks. I eagerly await their day of comeuppance.
You say: "So since I didn't have a change in symptoms, the LLMD was expensive, and I had negative results I gave up on lyme and looked elsewhere until 2 weeks ago."
Comment: That's understandable.
"My most recent doctor who I traveled all the way to California to see thinks I still MAY have lyme based off these results. He said I probably tested negative because I picked it up in Europe and they have different strains of the bacteria they test for."
Comment: Very true!
===========end of part one. see next posting for part two==========
==============this is part two of the response begun above==============
You say: "So he put me on amoxicillin and zithromax, which I've been on for 2 weeks and still don't feel any change in symptoms."
Comment: I'm no MD, but two weeks might not be enough time to react.
"He said I may have to go on IV therapy because it is neurolyme and harder to get out."
Comment: Some LLMDs never use IV abx, but some do. Also, some people have more neuro symptoms than others, but I don't understand the idea that some people don't get Lyme in the brain and neuro system. Lyme bugs in the blood, Lyme bugs in the blood supply to the brain, so why not Lyme in the brain?
"However, I'm really skeptical about the lyme diagnosis. I mean I tested negative a bunch of times even at Igenex --"
Comment: see above. I'm not so sure your reaction was negative. Also, after a period of time [a year+ for you], your immune system can kind of give up and not react to the Lyme anymore, so test results (which measure not the bugs in your blood, but the antibodies your immune system produces against the bugs) may after a while not show very positive results. Sometimes an LLMD will give a short course of abx, a so-called 'antibiotic challenge', to stimulate the immune system to make antibodies against any Lyme bacteria present. Then previously negative or uncertain tests will show more positive if there is an infection.
"I'm skeptical of the diagnosis because I don't really have the classic symptoms such as arthritis."
The IDSA docs are fixated on arthritis. That's because one of the earliest groups of MDs to get interested in Lyme were rheumatologists, and they focussed on patients with sore knee joints. Lyme bacteria try to hide in the body in areas with low blood flow to also hide from the immune system and antibiotics, and cartilege in joints and heart have low blood flow and therefore are attractive to Lyme bacteria. The rheumies got cause and effect confused, and decided that sore knee joints were a requirement for a diagnosis of Lyme, not just a symptom, and that's why you hear out of date MDs saying you must have bad knees to have Lyme. Bad knees may, but do not necessarily, come with Lyme.
The symptoms of Lyme are many and vary from person to person, from time to time, and depend also on which coinfections are present.
"Why would I go straight to experiencing neurological symptoms if it was a recent infections? My symptoms started with headaches and nausea for about 3 days then immediately progressed to mental confusion and memory loss."
Comment: To my understanding, time from initial infection to mental symptoms, if any, are not positively correlated. It is not unusual to have a fast, hard onset of symptoms, and since many Lyme patients never saw the tick that got them (I didn't), they may not know how long after infection the neuro symptoms appeared. Within a week of when I probably got my first tick bite, I was very very ill, and it went straight to neuro symptoms.
"My thryoid levels have since decreased from the time of onset and I have to take armour for hypothyroidism now. But I don't notice anything from that."
Comment: I too am now on thyroid supps, and it is known that Lyme bacteria mess with the endocrine system in various ways in different people.
"I've also ruled out heavy metals, candida, parasites, MS, Lupus, CFS, Liver disorders, tick borne encephalitis, other testable viral encephalitises, and mainstream infections from infectious disease doctors. I've had 3 MRIs all normal. 5 EEGs. 2 were abnormal. No conclusions through."
Comment: that's good information for your MDs and you to have.
"A doctor also said I may have just had some type of viral encephalitis that can't be tested for and caused permanent damage but I doubt that is the case. I doubt this because a) I never had flu like symptoms indicative of a virus, b) a spinal tap at time of onset didn't reveal any increase in white or red blood cells, or infection...although slight increase in protein, c) I actually got better for a couple days and symptoms went away after the severe onset then came back with another headache which doesnt happen with encephalitis, and d) most people with encephalitis my age (22) get better after a couple months or at least see improvements unless they had it so severe they go unconscious.
"A possibility is a may have some strange virus like a stealth virus or something but I doubt that too."
Comment: Welcome to the wild world of Lyme.
"Do you think I have lyme disease?"
Comment: You appear to have tested positive for it.
"Should I try IV therapy?"
Comment: That's for you and your MD to decide. You might consider it, but you also might want to consult another LLMD for confirmation. Because the medical profession is in such disarray over Lyme, there are no truly standard treatment regimens, no matter what the IDSA says. I have heard of people who were helped quite a bit by IV treatment, but others who do just fine on oral antibiotics, and others who use a combination of abx and herbal or other non-mainstream treatments.
Also I understand that some insurance policies don't cover IV abx but will cover oral. That can drive some treatment decisions, which you should talk with your MD about once you know what your insurance will pay for.
"How could I have such a sudden onset of neurological and cognitive symptoms with lyme?"
Comment: Why not? There is no proof that the bugs wait X days or months to attack after infection. It's also possible you were reinfected recently after an initial infection long ago, and I have no proof of this, but I wonder (based on stories I hear) whether sometimes the body can handle an initial infection, but another bite and the immune system gets overwhelmed. Again, no proof, but ....
"If it was chronic lyme, was I just asymptomatic until it triggered the cognitive stuff?"
Comment: That would be one explanation, but I don't think anyone really knows. It is what it is; finding an LLMD you trust and can work with is the key, along with educating yourself, since LLMD make mistakes and can be ignorant or blind also.
You might want to try IV treatment, or you might want to try more oral abx.
Be sure you get tested for coinfections -- that can change the treatment decisions. If your LLMD didn't test you for coinfections, I'd think about a second opinion.
Hope this helps. Let us know how you do and if you have any more questions. Others here may have ideas and suggestions/comments.
Best wishes --
two weeks isn't very long for the antibiotics. They usually do at least a month's worth. I'd not rule out Lyme Disease. You say you go outside alot. I must have gotten mine from outside too, because i like to grow flowers.
i must have neuro lyme cuz most of my symptoms are neurological...so how do they treat that im on amoxocillin but i know that isnt what should be used to treat neuro symptoms. i go to the doc monday to do all the other tests and hopefully get on the right meds.
I agree w/Jackie 100%!! My illness began 25yrs ago with pain in my feet. Around the same time I was diagnosed w/Mono which is a common misdiagnosis for lyme. I have many of the same symptoms as you....the neurological symptoms for me are wide spread along with hypothyroidism. Been through the nerve conduction tests & had a nerve biopsy taken...all results negative. I've been diagnosed with so many different things it's not funny & come to find out I have Lyme & Bartonella (just diagnosed a few months ago).
Have yourself tested for co-infections. The last thing that was affected has been my brain & vision. Things have gotten so bad lately that I had to stop driving. If you have a co-infection, my doc says that should be treated before treating lyme. When I started my treatment I didn't feel any different either. Now, I feel A LOT worse, but I've been told when you kill the bacteria they release toxins in your system...called "herxing". Find yourself a lyme literate doctor & stop going to infectious disease doctors. Take a look @ the documentary "Under Our Skin", that'll explain a lot of things ;-)
25 years! So sorry to hear that you've been ill so long. Sounds like you are on the right path now, tho. I haven't had bartonella, but I hear it can be a tough one. Have you read 'Cure Unknown' by Pamela Weintraub? I really liked it, because it was so clear that we Lyme+ patients are not alone -- and sadly not alone in being misdiagnosed. It's also a hopeful book, because it tells of people who have battled their way through and back from Lyme.
You take care, now....
Re: your Lyme disease
As a retired doctor who saw many people with Lyme Disease (LD) that was usually MIS-diagnosed, most all of your symptoms reflect someone with 'neuro-lyme' or tertiary stages of LD, after the spirochete has invaded the brain and spinal cord (the CNS). Look up everything you can find on the net and ignore the 'established protocols,' which were designed by MDs who worked for the insurance industry and limit the amount of time you can receive antibiotics. Find a doctor who will be willing to treat you based on your needs, not simply published protocols. The latest is to get ceftriaxone IV, daily for 4-6, or even 8 weeks, depending on how you respond. You'll get worse before getting better, as the spirochetes die off. Read. Do your due diligence on-line. Good luck.
Sounds like Lyme, so in my opinion do the treatment. You do not want to not do the treatment if this is Lyme. The benefits truly outweigh the risks. Don't rely on the testing as it is very inaccurate.