Friday, March 20, 2009

Lyme symptoms: Smell the coffee- before it is too late

A 43 year old female came in to see me within the last several weeks. She is extremely ill. She became ill about 18 months ago. It started with joint pains and cognitive deficits including confusion. She was initially found to have Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline (Klempner protocol). She was just starting to improve when the treatment was stopped. All of the initial symptoms and more returned. With further testing she showed antibodies to Bartonella. She was treated with Bicillin and Levaquin. The Bicillin, once weekly was continued for 3 months and the Levaquin given for 3 weeks. Treatment was stopped. Again, she was improving some when therapy was stopped. More symptoms came and she kept getting worse. She has two daughters who also developed Lyme disease from the same field trip. She reports that between the three of them they have seen 40 doctors prior to seeing me.

She works for cardiologists. She developed severe hypertension with wild uncontrolled swings in blood pressure. The heart specialists were at a loss.

She has seen numerous infectious disease specialists, neurologists and others. Mostly she was told that she did not have Lyme or tick borne disease. One told her he didn't know how to treat Bartonella. She told me that it appeared that all the physicians were reading off the same script!

Here are a few test results: Lyme IgM positive (CDC-old criteria), Ehrlichia IgG titer 1:1024, Bartonella henselae IgG 1:320.

Several doctors told her the infections were cured because she had IgG titers, not IgM (Ehrilichi and Bartonella).

This lady is very sick. She has profound fatigue, confusion and pain. She has a boat load of other neurological symptoms. I should report that many psychiatric symptoms became much worse with recent re-treatment with Rocephin and Doxycyline.

She presented with a highly abnormal neurological exam. She had diffuse myoclonus- muscle twitching, absent vibratory sensations of the extremities, poor finger to nose testing and a positive Romberg sign.

She has the core constellation of symptoms and findings upon which I base my diagnosis of chronic, systemic LD and neuroborreliosis. With this in mind, I will list the entirety of her current symptoms:

joint pain
random sharp shooting pains
Pain soles of feet
tremors
blood pressure dysregulated
tachycardia
Random muscle twitches
off balance
ringing in ears
sensitivity to sound and light
sweating
confusion
global cognitive problems- too numerous to list
"intestines slow"
increased headaches
sleep disorders
menstrual irregularities: no periods for years, start with antibiotics
psychosis- started after antibiotics were given- visual and auditory hallucinations

Lyme symptoms reflect a multisystem infection and are extremely varied-

For those who misinterpreted my post about Lyme symptoms I wish to clarify: Patients with Lyme disease may and do have all the symptoms listed by Dr. B in his guidelines. This patient even has the psychosis which I largely dismissed. I have seen all of these symptoms and many more in my Lyme patients.

My concern is that symptom check lists used in self diagnosis should not be displayed on the internet, especially when connected to ILADS. All patient varied symptoms need to be seen within a context of the whole clinical picture. Patients may have many isolated symptoms on the check list, which may occur over a period of time. Only a trained physician can decide if these symptoms fit into the overall clinical pattern of Lyme and tick borne illness.

The IDSA is writing letters and giving lectures claiming that self proclaimed LLMDS are essentially quacks and that symptoms attributed to chronic Lyme are vague and non specific. The IDSA claims such symptoms lists have many other causes- not Lyme disease. They are also making the strange claim that antibiotics just make people feel good for some unknown reason.

I spoke with a University scientist yesterday. His lab does research on Lyme. The IDSA got there before we did. He just heard a lecture which specifically debunked the notion that chronic Lyme disease exists. These guys are busy launching a full frontal propaganda war. We (the Lyme community) are busy quibbling about minutia while the walls are falling down around us.

THE TAKE HOME MESSAGE WAS SUPPOSED TO BE: LYME SYMPTOMS ARE IN FACT VERY,VERY SPECIFIC. THE FOCUS IN THIS WAR, WHICH I BELIEVE WE ARE CLEARLY LOOSING, IS TO LIMIT THE DISCUSSION TO THINGS WHICH ARE STRAIGHTFORWARD AND CAN BE READILY DEMONSTRATED.

Lyme patients have: 1) core symptoms which are reproducible in a large population
2) abnormal neurological examinations which are reproducible in a large population
3) abnormal laboratory parameters which are reproducible in a large population and
4) clinical responses to treatment which are reproducible in large populations.

Credible, science oriented physicians, need to go on the lecture circuit and present the other side of the story to these large groups of clinicians and scientists.

We have to win over the hearts and minds of these folks if were are to have any politic success with the legislators.

I unfortunately cannot do this until specific "political" issues which relate to my own situation are resolved.

24 comments:

Anthony Murawski said...

Hello LymeMD,

Please feel free to contact me. I'm a lawyer. I live in Seattle, and am licensed in Washington. But I'm on inactive status in Maryland, and can easily reactivate my Maryland license.

My contact info is on my website at http://www.murawski-law.com

john said...

I have had Lyme now for 7 months. I have a positive Western Blot and Eliza. I saw the tick, stupidly crushed it, and a month and a half later became severely ill with the rash. I was given 3 weeks of Amoxicillin by my regular doctor and told I would be fine, well I wasn't.

I have gone to two ILADS doctors since then that are on my isurance plan. I can't afford the ones near me off the insurance plan since they charge like a grand for the first visit and the drugs aren't covered.

One had me on 100mg of doxycycline twice a day and the other 250mg of Zithromax once a day. I haven't seen any improvment.

From what I've been reading on this site and other places this isn't enough medication.

I ask you are the hands ILADS doctors that take insurance tied?
Is it a bad move to go that route?

It has been 7 months of hell.

Anthony Murawski said...

Hi John,

I'd assume that under most insurance policies, the meds are covered to the same extent, regardless of whether the prescribing doctor is in or out of network.

Of course, some plans refuse to cover expensive IV therapy for more than just a few months. If you haven't done so, you should go over your policy carefully to see exactly what it covers.

Anthony

Lauren said...

Doc- I wanted to send you this link where other people with lyme post about their experiences. It's really informative:

http://flash.lymenet.org/ubb/ultimatebb.php/forum/1

dogdoc said...

This is exactly the take home message that needs to get across to mainstream medicine. This is a disease with recognizable symptom clusters and physical exam/ laboratory signs. This is a disease with predictable response to therapy.
I will get blasted for this one, but the last part of this takehome message needs to be in the majority of patients, we do not know for sure that it is Lyme disease or if it is a new disease that responds to antibiotic treatment and shares clinical signs with neuroborreliosis. The majority of the patients show some reactions on the sensitive Western Blots BUT they are often predominantly IgM responses and often weak banding (only found on the most sensitive types of Western Blots) indicating that perhaps we have a cross reaction with another species of Borrelia or another organism. Or that perhaps our tests are not as good as we think. We don't know.
The Lyme community including the LLMD's are wonderful for insisting that Lymes disease is this or that, and that our tests are wrong, etc. WE DON'T KNOW THAT. We do not have culture confirmation on all these cases (which could not be I understand). We could easily be treating two diseases- one is Lyme and the other is some new disease, perhaps a new species of Borrelia even, with similar effects and clinical signs in the body. This new disease might not have typical serologic responses on the Lyme tests not because the tests are bad, but because it is not Lyme. We should not state emphatically because we do not know. If we stick to the REAL facts, there would be a lot less fighting with mainstream medicine and all that we say would not be discounted in the same way. Just like with treated Babesia that has no laboratory signs or Bartonella the same way. These are real diseases and are common coinfections. However, just because someone has clinical signs described as Babesia like and responds to Mepron therapy, does not mean they have Babesia. Mepron treats a lot of parasites and clinical signs can overlap. Insisting to the world that we are treating Babesia in a patient with no laboratory backing- PCR, titer, and blood smear negative- is not the way to get the attention of mainstream medicine. Insisting that a group of patients with this group of clinical signs responds to Mepron but has no laboratory findings of Babesia, so we wonder what it is and someone should study this... now that would work fine. We should not complain about the IDSA's guidelines for Lyme- we don't know that they are not right. We should complain that noone is paying attention to this well described clinical syndrome and finding out what it really is- is is Lyme with bad tests or something new that cross reacts? Facts are facts. We need to concentrate on only the facts. The fact is we are treating a specific clinical complex. The fact is we don't know for sure what it is. No Koch's postulates have been satisfied. Doc- you know I think highly of you and of your clinical abilities. I know you actually think- a real rarity in doctor's these days. Think about what you really know and what you don't. Tell me you know this is not a new Borrelia species causing what will be called FENA (fatiguing encephaloneuroarthalgia) and not neuroborreliosis in 15 years when its all discovered. It will be found to cross react with the serology and currently used PCR's for the Lyme organism. I am not saying this will be the case- but we should only vehemently argue what we actually know. Everything in your take home message is fact-we know it. That it is Lyme is conjecture. Most of these people do not have positive cultures or even positive PCR's. We don't know for sure what it is or isn't. How can we have any credibility screaming its Lyme, its Lyme and it is chronic? If we screamed your take home message without the known name, we would have credibility. Those are the facts- recognizable, observable, repeatable facts. It doesn't act like Lyme as we thought we knew it, it doesn't test or treat like it- what is it? Were we wrong? Has it mutated? It is something new? WE DO NOT KNOW. And need to stop saying we do. We are shooting ourselves in the foot on this one.

Bryan Rosner said...

Newsweek believes in chronic neuropsychiatric Lyme:

http://www.newsweek.com/id/60723/page/1

Bryan Rosner said...

Tufts University identified chronic Lyme in 1991:

http://www.ncbi.nlm.nih.gov/pubmed/2172819

Bryan Rosner said...

35 additional chronic Lyme supporting studies:

http://www2.lymenet.org/domino/abstract.nsf/CLD

davidtfull said...

What is being described in this patient are classic adverse drug reactions to the fluoroquinolone class. (Cipro, Levaquin, Avelox) etc. There is an excellent peer reviewed and cited article to be found on wikipedia concerning these reactions: Adverse reactions of fluoroquinolones.

These reactions may manifest any time during therapy as well as long afterwards and for the most part are non abating. This is a diagnosis that should be entertained when a patient who has been on these drugs manifest such symptoms.

Psychiatric reactions, CNS and PNS disturbances, muscle and joint pain together with tendonitis that may progress to spontaneous rupture are all known, listed and published ADRS to the fluorquinolones.

Regards,

Mr. David T. Fuller
Director
Fluoroquinolone Toxicity Research Foundation

Anthony Murawski said...

It get the impression that this isn't a reaction to fluoroquinolones, for two reasons:

(1) It appears from LymeMD's summary of the symptom history that the symptoms were present prior to use of Levaquin: "She became ill about 18 months ago. It started with joint pains and cognitive deficits including confusion. She was initially found to have Lyme and Ehrlichia. She was treated with 30 days of Rocephin followed by two months of Doxycyline (Klempner protocol). She was just starting to improve when the treatment was stopped. All of the initial symptoms and more returned."

(2) It looks like she was improving on Bicillin and Levaquin: "She was [subsequently] treated with Bicillin and Levaquin. The Bicillin, once weekly was continued for 3 months and the Levaquin given for 3 weeks. Treatment was stopped. Again, she was improving some when therapy was stopped."

I agree that it's sometimes easy to mistake medication side-effects for disease symptoms (or herxing), but based on the info presented, I wouldn't jump to the conclusion that fluoroquinolones are the source of the problem here.

Anthony

Anthony Murawski said...

Just a quick follow-up: I'm not dismissing your concerns about fluoroquinolones in general. I'm just saying that in this particular instance, based on the summary info presented, it doesn't appear that Levaquin was the cause of these symptoms.

Anthony

Anthony Murawski said...

Hi dogdog,

I think you're giving the IDSA types a lot more credit than they deserve. They have never come close to arguing that ILADS docs should be considering the possibility that some other related organisms -- which respond to ILADS protocol antibiotics -- might be responsible for what is frequently diagnosed as Lyme disease.

In fact, to the extent that ILADS docs don't subscribe to a ridicilously narrow set of symptom criteria, the IDSA types categorically deny your first statement in absolute terms --(i.e., that "This is a disease with recognizable symptom clusters and physical exam/ laboratory signs. This is a disease with predictable response to therapy.") For instance, they claim that "[t]he great majority of people who are infected with Lyme disease develop a large (three inches or more) circular, red rash surrounding the site where a tick attached"; and that "While patients with Lyme disease may have muscle and joint aches, these symptoms usually accompany objective signs like the rash or arthritis...." See
http://www.idsociety.org/lymediseasefacts.htm.

Their denial runs contrary to a mountain of clinical evidence that patients diagnosed by ILADS criteria are successfully treated by LLMDs. They just deny that this happens. They routinely claim that patients just "think they got better" after being treated by ILADS docs. Their denials are backed up by pure speculation. Their only evidence that LLMDs routinely make a false diagosis of Lyme disease is that many symptoms recognized by ILADS docs don't resolve after a short course of treatment with a single, oral antibiotic. They explain such treatment failures with a hypothetical autoimmune syndrome. They routinely diagnose people with this hypothetical syndrome -- as if it were a real, confirmed disease -- as a justification for denying long-term antibiotic treatment. They're just not interested in facts.

Regarding testing - if the IDSA types wanted objective and reliable testing, they wouldn't promote garbage like the ELISA as a screening test.

I also get the impression that antibody testing by IGeneX is pretty darn reliable. If you'd like, I'll email you a copy of their in-house review of their testing methods, using PCR-confirmed samples. Just send an email to anthony (at) murawski-law.com, and I'll reply with the attachments.

I think you're raising some interesting points. But you are far more interested in facts and intellectual rigor than the people at the IDSA.

Anthony

Momcat1011 said...

I am curious about the deregulation of of blood-pressure. Which organism do you think is responsible for this symptom?

dogdoc said...

Hi Anthony,
You bring up a lot of good points. I have read everyone's positions and know them well. I have not found a lot of good thinkers in many groups of docs. I am one- so I feel I can talk on that subject.
There are subgroups of disease in this whole complex in what patients respond to and how they treat. There are patients with stong IgG and IgM responses that treat fairly easily. There are patients with weak antibody responses (only reported on the sensitve Western blots that report weak bands). These patients don't react they same way in treatment. There are other subgroups of patients responses. We are likely to have a number of things creating similar clinical signs. This is too much variation in immune response and treatment response to be exactly the same thing. We need to find out why these differences exist. Our answers will be there. Until we get them, this is not going to be an easy to document or treat disease. There has to be a reason why some people get the classic strong serological response and some do not. A cross reaction with a similar organism is just one possible explanation (PCR's can cross react as well). There are many options. But there will be a reason. That type of serological diversity is not typical. This is the reason why I don't think we should be concentrating on the name. Likely in the end, both groups will be a little bit right and a little bit wrong. Angry, fighting people don't think very well. They spend more time trying to discredit the other guys, then actually pondering... now what would cause this? Again I will be unpopular, but the ILADS guys haven't been stellar in it all either. They have their own party line and no thought allowed there either. It is all the IDSA's problem and the tests are wrong and they are treating chronic Lyme disease with Bartonella and Babesia coinfections. Period. What about the little protozoa swimming around in my families and a lot of other patients bloodstreams? The ones that are unlike anything anyone has seen before. Infectious organisms are not static- they evolve and mutate. New things get discovered all the time. Heck, there are literature confirmed cross reactions of the most "specific" bands on the Lyme Western blot with totally unrelated GI bacteria. These things are not as specific as everyone talks them up to be. If everyone runs around thinking they have it solved and just everyone else is wrong, noone will ever actually get it solved.

Lauren said...

Doc- What experience do you have with Alinia? I heard LLMD's using it instead of Flagyl, that Flagyl causes many bad side effects and that this drug is better tolerated. Thoughts?

Ben said...

There is still time to send comments to the IDSA Guidelines Review Panel. Very important tips on how to do it are found at

http://www.lymedisease.org/news/lymepolicywonk/47.html

(One has to be brief and polite; and, one should send a copy to the Connecticut Attorney General)

bobcat said...

dogdoc,

I think what you are saying makes a lot of sense....so much sense that it terrifies me, because I think it's probably true.

I have tested positive through Stony Brook Labs on the Western Blot IgM bands 18, 23, 39, 41, 58. (which is CDC positive)

On Igenex, I have had the above bands show up on the IgM, but also had 31, as well as a few of the others on the IgM (I don't have my Igenex in front of me right now). (never had the new band 30/31 confirmation test though)

I have also had some moderate response on my IgG bands on Igenex, though never had a CDC positive IgG.

I tested positive for babesia duncani through Sonoma County Public Health lab at 1:512. Also had a positive Igenex FISH. No other babesia testing through conventional labs has been positive.

I had a positive titer through Quest at one point for bartonella henselae.

I also tested positive for the mystery bug from Fry Labs (which I am hearing is believed to be protozoal).

My CD57 is very low (in the teens).

I was in an extremely tick endemic area, outdoors, during tick season, 3 weeks prior to becoming severely ill.

Despite all the above information, I still sometimes doubt that I'm on the right track by calling this illness Lyme/babesia/bartonella. I have been on gobs of ILADS-approved treatment for all three.

I wonder what this mystery protozoa is, honestly. I have heard through the grapevine what Fry is seeing can be described as a toxoplasmosis-like organism.

I don't like to say I have Lyme, because the truth is, I don't know what is to blame for my symptoms. Without giving too much personal information, I'll just tell you my worst symptom: fatigue. It completely and udderly disables me.

What I can tell you is that I do respond to the herb artemisinin. Sometimes I respond with night sweats, or vivid nightmares, and other times, it makes me feel a little better. This is what piques my interest more about this protozoal organism Dr. Fry is finding.

I'm not sure what prompted me to finally respond on this blog after reading it for so long, but I think part of it was what you said, dogdoc. I just wanted you to know that I agree with you.

I think more research is needed. I think there are too many unknowns. Most of the time, I think that us patients are shooting ourselves in the foot by assuming we know what is going on.

Lyme report: Montgomery County, MD said...

I think we have to get on Dr. K's case a little to continue sequencing the protozoan. He is paying for the research with out of pocket money and it is expensive. Maybe we should consider helping him financially if that is the hold up. It looks to big to be Toxoplasmosis. There are some University labs that are interested and we need to get them involved.

With all these expensive tests, IgeneX, MDL, Clongen might be very unhappy if it turns out that the best screening tool for the complex of infections is simply viewing a blood sample under a microscope at 1000 power.
There is no data, but it might pick up 75% of cases- perhaps nearly 100% in very ill patients.

We are not a stage where there should be "protocols." Patient responses are so variable.
For example, some patients respond unexpectedly well to Plaquenil- sometimes in combination with Doxycyline; such was the case with a patient I saw yesterday.

Artemesin may be broad spectrum. Perhaps a pilot study should be done to see if the parasite load in the blood decreases with its use. Right now we don't have an assay to quantify the parasite load.

Protozoa are eucaryotes, an 18S mitochondria assay or a more complex gene sequencing process should give us an answer- the technology should be easily available. Looking at its morphology with a better microscope would also be a helpful start.

This problem should have been solved long ago. Can anyone help?

Seibertneurolyme said...

bobcat,

I too find it interesting that you are responding positively to artemesinin. My hubby who has the mystery bug (both Fry and Clongen tests positive) has had a very positive response to the herb cryptolepis.

This is an African herb that Buhner suggests for babesia. Also works on gram negative bacteria. Unfortunately the herb is in short supply right now. So hubby has added in some other babesia herbs which don't seem as effective.

The cryptolepis landed hubby in the ER and hospital when he first tried it a couple of years ago. Now that we think his babesia is gone he could tolerate the herb and had remarkable improvement the month he was on it very high dose.

Suggest you try adding in lysine and lactoferrin to your protocol. May help even more.

LymeMd -- I for one am looking forward to the presentation Fry Labs is planning at the conference in Kansas City on March 28 and 29. Hope to hear that he has a DNA sequence on his pathogen.

Lyme report: Montgomery County, MD said...

What is an ILADS approved treatment?
Never heard of it.

bleujai said...

ILADS.ORG

bleujai said...

invalidates current tests- link below

http://underourskin.com/blog/?p=127

Michael said...

Here's a very brief overview on what's going on with me. (Note: Currently undergoing treatment for Lyme Disease under the care of a LLMD - taking Doxycycline 200mg 2x daily and Ciprol 500mg 2x daily).

In January I became very sick with a "flu-like illness" which passed quickly. Shortly after, I developed acid-reflux issues, which I've never experienced before (now being 26). The acid-reflux issues then passed 2 months later (w/out further medication treatment) and I felt fine. Following this, I started to feel very tired, my eyes were red, began experiencing tingling sensations and a long list of other symptoms for approx. 2 months now to include:


Symptoms (that change/morph):

head pressure (comes and goes)
head pain (comes and goes)
muscle/joint aches (knees, shoulders, feet)
muscle/joint/limp weakness (some days better than others)
loss of energy/fatigue (comes and goes)
eyes very red (also dry)
dry/watery eyes (come and go)
unexplained chills (come and go)
neck stiffness
cracking sounds (neck/body)
objects feel heavier than normal when lifting
back aches (upper/mid/lower)
tingling sensations
cold hands/cold feet (comes and goes)
increased floaters “spots in vision” (comes and goes when looking at computer or outside)
prickly sensations
part of face numb (comes and goes)
dfficulty swallowing (comes and goes)
tongue pain/white bumps along side of tongue/sore under tongue – new development
pinky curled as woken up – happens only at night, every now and then (takes 15-20 sec to bring back to normal)
abnormal light sensitivity (going outside, watching tv, near regular lighting)
feelings of numbness OR tingling sensations in arms or legs (comes and goes)
fingers twitching when hand is raised (comes and goes)
increased heart palpitations (comes and goes)
restless sleep
constipation (almost constant until started on acidopholus)
lower/increased BP (fluctuates)
lower body temp (96.4 – 97.7) comes and goes
slight fever (99.1- 99.4) comes and goes
testicular tingling/abrupt shoot pain (very infrequent)
trouble starting/stopping during urination (every so often)
sharp shooting pains on left/right side of body (comes and goes)
paranoia (one night though my fiancee's parents were trying to poison me)

On May 3rd, I self-admitted myself to the ER feeling as though I was about to black-out, w/ mild chest discomfort. It's very possible I was having a panic attack as my EKG came back normal as was my CT scan and chest X-ray.

Results:

B Duncani (Babesia) was 1.80 IgG
HME Panel (Human Ehrlichiosis) was 1.40 IgM
B Henselae (Bartonella) was 1.20 IgM

Western Blot - Lyme Test (IND on 4 total bands)

IgG **31 kDa (Indeterminate)
IgM **23-25 kDa (Indeterminate)
IgM **31 kDa (Indeterminate)
IgM **41 kDa (Indeterminate)


My fiancee' and I were exposed to an area with infectious ticks in both late Nov. '08 and (potentially) Jan. '09 when hiking/mountain biking.

What boggles my mind here is that I was sick with a horrible flu, it passed. Then, had horrible acid reflux issues for approx. 2 months and it completely dissipated. Then, all symptoms mentioned above creep up out of nowhere. None of it makes sense. Any thoughts, ideas or suggestions would be appreciated. I've now been seen by numerous MD's and am pursuing an Infectious Disease Doctor while out of CA (visiting Seattle).

Interestingly enough, many of my symptoms (19 or so) have resolved or are 95% resolved since starting both antibiotics. Would it be possible for somehow to have these titer levels for co-infections, etc... and not have Lyme? To me, it seems as though I was exposed to Co-Infections, at the least, if not Lyme.

Any ideas on what direction(s) to pursue would be helpful. My life is definitely not the same as it was...and if not treated appropriately, may continue.


-Michael

Michael said...

Here's a very brief overview on what's going on with me. (Note: Currently undergoing treatment for Lyme Disease under the care of a LLMD - taking Doxycycline 200mg 2x daily and Ciprol 500mg 2x daily).

In January I became very sick with a "flu-like illness" which passed quickly. Shortly after, I developed acid-reflux issues, which I've never experienced before (now being 26). The acid-reflux issues then passed 2 months later (w/out further medication treatment) and I felt fine. Following this, I started to feel very tired, my eyes were red, began experiencing tingling sensations and a long list of other symptoms for approx. 2 months now to include:


Symptoms (that change/morph):

head pressure (comes and goes)
head pain (comes and goes)
muscle/joint aches (knees, shoulders, feet)
muscle/joint/limp weakness (some days better than others)
loss of energy/fatigue (comes and goes)
eyes very red (also dry)
dry/watery eyes (come and go)
unexplained chills (come and go)
neck stiffness
cracking sounds (neck/body)
objects feel heavier than normal when lifting
back aches (upper/mid/lower)
tingling sensations
cold hands/cold feet (comes and goes)
increased floaters “spots in vision” (comes and goes when looking at computer or outside)
prickly sensations
part of face numb (comes and goes)
dfficulty swallowing (comes and goes)
tongue pain/white bumps along side of tongue/sore under tongue – new development
pinky curled as woken up – happens only at night, every now and then (takes 15-20 sec to bring back to normal)
abnormal light sensitivity (going outside, watching tv, near regular lighting)
feelings of numbness OR tingling sensations in arms or legs (comes and goes)
fingers twitching when hand is raised (comes and goes)
increased heart palpitations (comes and goes)
restless sleep
constipation (almost constant until started on acidopholus)
lower/increased BP (fluctuates)
lower body temp (96.4 – 97.7) comes and goes
slight fever (99.1- 99.4) comes and goes
testicular tingling/abrupt shoot pain (very infrequent)
trouble starting/stopping during urination (every so often)
sharp shooting pains on left/right side of body (comes and goes)
paranoia (one night though my fiancee's parents were trying to poison me)

On May 3rd, I self-admitted myself to the ER feeling as though I was about to black-out, w/ mild chest discomfort. It's very possible I was having a panic attack as my EKG came back normal as was my CT scan and chest X-ray.

Results:

B Duncani (Babesia) was 1.80 IgG
HME Panel (Human Ehrlichiosis) was 1.40 IgM
B Henselae (Bartonella) was 1.20 IgM

Western Blot - Lyme Test (IND on 4 total bands)

IgG **31 kDa (Indeterminate)
IgM **23-25 kDa (Indeterminate)
IgM **31 kDa (Indeterminate)
IgM **41 kDa (Indeterminate)


My fiancee' and I were exposed to an area with infectious ticks in both late Nov. '08 and (potentially) Jan. '09 when hiking/mountain biking.

What boggles my mind here is that I was sick with a horrible flu, it passed. Then, had horrible acid reflux issues for approx. 2 months and it completely dissipated. Then, all symptoms mentioned above creep up out of nowhere. None of it makes sense. Any thoughts, ideas or suggestions would be appreciated. I've now been seen by numerous MD's and am pursuing an Infectious Disease Doctor while out of CA (visiting Seattle).

Interestingly enough, many of my symptoms (19 or so) have resolved or are 95% resolved since starting both antibiotics. Would it be possible for somehow to have these titer levels for co-infections, etc... and not have Lyme? To me, it seems as though I was exposed to Co-Infections, at the least, if not Lyme.

Any ideas on what direction(s) to pursue would be helpful. My life is definitely not the same as it was...and if not treated appropriately, may continue.


-Michael