Diagnosed with Lyme, not sure what to think

Well, I did my tests with Igenex and got diagnosed with Lyme disease. The reason I didn’t accept my original MAV diagnosis was because:

  • My health has continued to deteriorate over a 4 year period. In particular, I have severe pain in my joints and can no longer exercise. I am 34. There is nothing I can find under migraine that would cause me so much problems with my joints.
  • I have severe pressure in my chest and weird chest pains. I know migraine can cause pains in the chest, but when I described them to my neurologist, he said the type of discomfort I have cannot be explained by migraine
  • I have no real triggers. I get the odd good week out of the blue, but there is zero relationship between any type of food + my migraines

The Igenex tests came back positive for the bands that would indicate Lyme. Do I believe these results? I don’t know, but I would believe something like Lyme vs migraine due to problems above.

I am not sure exactly what my next steps are, I have an appointment with Dr Silver in October so will go and see what he says. Amongst all my health problems, the severe pain in the joints is one of the worst, as I cannot exercise, which in turn really affects your mood. I cannot see how solving my migraine would help this (if I did have MAV), hence the reason I looked for another cause.

Hi dizzyK,

Migraine should not be causing severe joint pain like you describe. I do get stiff joints if I am exposed to trigger foods but it doesn’t last. Can you get another opinion from a trusted physician based on the test? Personally I would not want to touch one of those LLMDs and I don’t trust Igenex. MissMom can probably give you much better info on testing.

Good luck.

S

Hi dizzyk

I was interested in your post and also your blog. Certainly your history of fibromyalgia, joint pain, IBS and dizziness sounds more than just migraine. Also the fact that you have deteriorated over the last 4 years. Like you, I have not been able to link my dizziness to any foods and I have had random good days and lots of worse days for no apparent reason. I don’t have the joint pain or IBS though.

Did you send off for the Igenex kit and get the blood test done via your GP? I wondered if you can recall being bitten? Also, have you travelled much or do you go outdoors a lot?

I hope you continue to dig deeper and get to the bottom of this. Please keep us posted x

@scott, I got the Igenex tests done through my GP. She has now referred me to a specialist who deals with tropical diseases (or something like that). The problem I have is the healthcare in Ireland is generally awful. It’s hard to get anyone to take you seriously if nothing shows up in blood tests. I also question the Igenex tests. The only thing is, people with Lyme have the exact same story as me. Everything for me started with the flu 4.5 years ago and since then, my health has never been the same. That’s why I always come back to some kind of virus. I did get diagnosed with arthritis in my back at a very early age - 21. Not sure if that’s related to anything. It never stopped me doing much.

@jem, Yes, I did it via my GP, but she openly said she had no idea what the results meant. She referred me to a local hospital. I cannot remember being bitten. I spent time in Australia and camped out in woods, that’s really it. Nothing out of the ordinary. As per above, the reason I keep thinking Lyme or something does sound plausible is due to my story being identical to a lot of people who say they have been diagnosed with Lyme. Funnily enough, there was a whole program on Irish radio recently about Lyme sufferers. I haven’t listened to it yet, it’s available here: rte.ie/radio1/liveline/progr … id=1292574

It’s all pretty confusing.

Do some online research for Reactive Arthritis. I wonder if you are HLA B27 positive? It’s associated with Reactive Arthritis, an autoimmune disease that manifests as inflammation in joints that is “activated” or precipitated by an infection (like your flu?). HLA B27 is also associated with Ankylosing spondylitis, which can cause an arthritis-like condition in the back, which usually becomes symptomatic in the early 20s. AS can also cause chest pain. Do you have any issues with your eyes?

I would push for a blood test to see if you are HLA B27 positive. If I were you, I suggest you talk with your primary care doctor about a referral to a rheumatologist. Don’t wait. You don’t want irreversible joint damage.

Oh, one more thing. Dr. Timothy Hain (neurootologist in Chicago) has noted an association between caucasians who are HLA B27 positive and auto-immune disease of the inner ear. Do you have hearing loss?

Are you male? Males who are HLA B27 positive are much more likely to be symptomatic with Ankylosing Spondyilits than females. Also, if I remember correctly, people of northern European ancestry (you are Irish?) are more likely to have HLA B27.

If I were you, I would shelf the whole Lyme Disease diagnosis for now and make a mad rush to see a rheumatologist. Young males in their 20s don’t just develop arthritis in their backs.

I agree, have you had an ANA test done to see if you have anything autoimmune going on? Sounds quite possible and a rheumatologist would be the place to go.
An ANA test (simple blood test) would tell you if you had any one of the many autoimmune diseases (many of which have many of the symptoms of lymes disease).

Christine

I wanted to add that people with diseases associated with HLA-B27 are generally Seronegative, meaning they often test negative for the blood tests rheumatoid factor and ANA.

Ulcerative Colitis is also associated with HLA-B27, so that could explain your bowel issues.

Hi DizzyK,

I ran across an interesting abstract from a study performed in Turkey and thought of you. Although the study involved only a small number of participants, the authors linked Cochleovestibular dysfunction to Ankylosing Spondylitis. That certainly may explain your dizzy symptoms…

Again, I’m not saying you absolutely have Ankylosing Spondylitis, but your history is sure suggestive of such, and it is something you should probably discuss with your physician.

I don’t have access to the full-text article, but here’s a link to the abstract:

ncbi.nlm.nih.gov/pubmed/16790991

Here are additional pertinent abstracts:

ncbi.nlm.nih.gov/pubmed/22526477

ncbi.nlm.nih.gov/pubmed/17094003

ncbi.nlm.nih.gov/pubmed/17125576

Where are you on this dizzyk? I’m asking because there are a couple of outstanding questions for me. First you say this all started after having flu like symptoms about 4.5 yrs ago. Can I ask–during that time frame, had you been around an area, or had you been participating in activities that would have put you at risk for having or sustaining a tick bite or attachment? If so, then it IS possible that this could indeed be Lyme disease related.

Have you ever had a weird or unexplained–not itchy or painful, but just there, rash or “bug bite”?

All that said, there is a completely separate way to roll–if you are a city dweller with little “nature” exposure–or if you spend very little time in Lyme ville–or if you simply cannot imagine having been in a situation where you could have been exposed to a tick or to blood products (via a transfusion–bear with me please world of MAV) for the super off chance of exposure–then consider the option of autoimmunity as has been posited by Kennedylane. Many of us who find ourselves struggling with autoimmune diseases discover such to be true after suffering an infection such as the flu or Epstein Barr etc. Something causes the immune system to turn on itself after infection with specific strains of flu or certain viruses and we find ourselves fighting ourselves. Thus things like lupus, rheumatoid arthritis and multiple sclerosis become issues in our lives. And trust me (a person who is dealing with this issue) the autoimmunity and the imbalances it causes can TOTALLY trigger and sustain serious migraine issues!!! For me it was the first issue to arise in what later became a diagnosis of MS. The migraines are real, and somewhat separate–but very connected to the MS–but the imbalance caused by having a body that is fighting with itself can TOTALLY trigger the migraine cascade.

Unfortunately–BOTH of these scenarios could be very real possibilities for you. And as if you weren’t far enough into the world of confusion–let me throw this at you–

I was diagnosed by a company called NeuroScience as being “Likely Lyme Positive” based on a test that measures immune responses and inflammatory responses that their research showed was linked to Lyme infection. Well guess what–chronic infection due to autoimmunity is basically identical to chronic infection due to infection–so the test they gave was right–I had chronic inflammation–but ALL the other tests that said I was Lyme negative were right too. Because I didn’t have Lyme–I had MS causing chronic inflammation with no other indicators of the existance of Bb in my body.

You on the other hand have protein markers in your blood that indicate that you either have now or have had in the past spirochetes that can be identified as Borrelia b. or related to it enough to have the same protein markers.

I’m not a doctor. But me–in your shoes–if I had any chance in hell of having been bitten by a tick that could be carrying Lyme–I’d give the Antibiotics a go for a period of 6-8 months. If I noticed NOTHING–I’d probably use that as evidence that Bb was likely not the problem. BUT if you treat for Bb (while also continuing to treat for migraine) you may well notice a huge change, and you could very well get better—and then…well, you’ve won!

Dude–just be sure to use the probiotics–because the side effects of the antibiotics can be ugly :oops:

Very well said, Dolfnlvr! I especially like your line: “you could very well get better—and then…well, you’ve won!”

I just have one other thought. Even if you do see some initial improvement from the antibiotics, should you go that route, give it some time before coming to any conclusions. Antibiotics can have an anti-inflammatory effect in and of themselves, which can certainly impact any auto-immune issues that might be going on…

Interesting story, Dolfnlvr. It is my understanding that MS can have vestibular manifestations. Since you still seem to be linking your dizzy issues to migraines (induced by MS) were MS lesions that affect the vestibular system ruled-out?

Yeah–I only have one “lesion” which is on my cervical spine. Officially it is diagnosed as a CIS. However, I have three tiny TINY spots on my brain that are consistent with migraine activity, but since they can’t be 100% sure that these are migraine related and not MS related they clinically ruled me MS instead. The lesion on my spine did not appear until over a year AFTER the migraine activity had already begun. AND, I have had two episodes of occular migraine in my past (more than 8 years ago) that were related to hormonal imbalance after my children were born. I’ve never had “regular migraine” activity as in the headache–except when I had the lumbar puncture for the MS. I have had every test and picture you can imagine–they are pretty sure that the disequilibrium etc is migraine related–and thank goodness, the topomax is helping me on that front!!!

— Begin quote from "dolfnlvr"

I’d give the Antibiotics a go for a period of 6-8 months.

— End quote

Dolf – what’s the rationale here given four randomised trials have shown there is no effect from antibiotic use over and above what is normally suggested for this type of medicine. Moreover, the risk of adverse events probably outweighs long term use and then there’s the worldwide issue of antibiotics resistance due to their overuse. The latter is a very big problem. In Australia we have launched a mass audience campaign to educate the public about this problem. There may be a day not far off when there will be no antibiotic of any use to us any longer.

S

Interesting Dolf about the lesion on the spine. Excuse my ignorance in this area, but does this mean the radiologist saw a funky area on the spinal cord as it passes through the cervical spine that appears to be demyelinating?

I have 3 white matter lesions in my brain as well. The radiology report says that it is only a slim chance that they are due to migraine. He expressly stated that they do not appear due to MS, and the neurologist was not concerned in the least with the WMLs. Do you know how they can make that call whether they are due to MS?

That’s wonderful that you are responding to the Topamax. So it looks like the cervical spine “lesion” is just an incidental finding since it is not causing you any symptoms? (Not trying to downplay it, of course.)

Scott–I have to start with a disclaimer here–I live on the Eastern Shore of Maryland–a Lyme endemic area where Lyme disease is not a “maybe” it is a likelihood if you are bitten with a tick. Granted, you are also likely to have the tell-tale symptoms and you are likely to be treated prophylactically, especially if you have more than one deer tick on you that has been attached for more than 24 hours. I am also very aware that Lyme debates around the world are much less “black and white” as there is much debate as to whether or not the Lyme infection occurs after travel to a Lyme endemic area, whether there are “other” Borrelia variants, whether it is Lyme at all, and whether Lyme can manifest as a latent disease etc. etc. etc.

In this particular case, I am prone to thinking that Lyme is a possibility, though, as I’ve said more than 100 times in the past, I am not a doctor, I don’t know the poster personally, I don’t know specifically what his exposure to Lyme prone areas may have been, and I don’t know where he lives (UK, AUS, or US–though once I get out of this reply I may look to see if I can tell the answer to that part :oops: ). That there are symptoms that are aligned with Lyme infection (joint involvement AS WELL AS the neurological symptoms) along with a positive test that is based on WB banding patterns which are the best test we have (iGenex or otherwise) at the moment gives decent evidence that there is an ongoing inflammatory response involving the joints and CNS (common to both Lyme AND Autoimmune disorders) and that there is a spirochete similar to Lyme (Borrelia b.) in his system. Now–if he’s been to an area (stated clearly in my response) where it is likely that he could have been bitten by a Bb infected tick–then antibiotic treatment is warranted–and, okay–if he doesn’t want to do 6-8 months–a course of at least 4-8 weeks IS warranted with Lyme disease (as it is with syphilis) because of the the life cycle of the bacteria–not a “normal streptococcal or staph” type organism"–

In order to kill the Lyme bacteria with antibiotics, you have to catch it at the right point in its life cycle, and if you’ve been infected for longer than a few weeks it is quite possible to have several “generations” of bacterial in the system. The life cycle actually takes approximately 4 weeks, so to kill the bacteria–all of them, and not have a new infestation later–you have to be certain to kill not only the currently active generation, but the soon to be active generation. This is true of any spirochetal organism–they are difficult to treat with antibiotics beyond initial infection, unlike short spanned bacterial infections/organisms like the coccidia and bacillus cells.

KennedyLane–the cervical lesion is not “asymptomatic.” I lost all feeling in my left arm and have had transient neuralgia in my left chin–along with Lhermitte’s sign. These were the symptoms that sent me back to the neurologist for a new MRI–they thought I had a herniated disc due to carrying heavy feed bags on the farm–low and behold–not the feedbags.

Small “dots” on the brain are pretty typical findings on most MRI’s of normal people. They aren’t really sure why–but life seems to leave a lot of us with brain scars from this or that–and most people never know about them because they don’t even have an MRI. But those of us with migraines etc get MRI’s and those stupid little dots scare us. If they are in certain spots–they are often noted to be due to migraine. If not–they are usually considered “incidental findings.”

The lesions have a certain “look” about them if they are active. Mine was active at the time of the MRI–witht the Gadolinium (SP?) they could literally see the inflammation reaction typical of myelitis. They diagnosed me with a clinically isolated syndrome (CIS) which nowadays many describe as the “first” attack of MS and treat it as such in order to “nip it in the bud.”

Here’s to keeping the bud tiny :slight_smile:

(**She’s have been edited to he’s due to updated information :wink: )

— Begin quote from ____

In order to kill the Lyme bacteria with antibiotics, you have to catch it at the right point in its life cycle, and if you’ve been infected for longer than a few weeks it is quite possible to have several “generations” of bacterial in the system. The life cycle actually takes approximately 4 weeks, so to kill the bacteria–all of them, and not have a new infestation later–you have to be certain to kill not only the currently active generation, but the soon to be active generation. This is true of any spirochetal organism–they are difficult to treat with antibiotics beyond initial infection, unlike short spanned bacterial infections/organisms like the coccidia and bacillus cells.

— End quote

BTW Scott–it is common in my neck of the woods for people to have clear Lyme infections, proven with swollen knees that are drained and tested for Lyme bacteria directly. They are often treated for the infection to great relief and success only to have swollen knees 3-6 months later. Upon drainage–it is common to find the Lyme bacteria again in the fluid—whether due to reinfection from a new bite or the same infection regrown has not been proven one way or the other yet–there is still debate. So instead of long term antibiotic treatment to eradicate the possible ongoing infection, many of these patients have 2-4 wee treatment only to undergo the same treatment again in 3-6 months in an ongoing manner. Veterinarians in the area (who argue with the people doctors) believe that this is a poor management practice and that THIS is what is causing mutation and resistance moreso than sustained attack on the organism from the beginning.

It’s an ongoing–truly scientific and non-emotional–debate right here in my literal backyard.

A quick update

  • First I am not a her :slight_smile: I am a 34 year old male from Ireland
  • I lived in Boston for a time when I was 21 and Sydney back in 2006. I don’t know if that adds up to Lyme infected areas
  • I don’t ever remember a tick bite
  • I spoke with a tropical disease specialist who knew a lot about Lyme. He used to live in the U.S and was very wary of ,y results from igenex. He said the original tests the hospital did came back negative. I was told by Lyme sufferers igenex are the only accurate version of the tests. The specialist had little faith in them
  • he was really knowledgeable on the whole debate about Lyme
  • I have an appointment with a rheumatologist because I am now looking up the possibility of an auto immune disease. I was told I had osteoarthritis in my back when I was 23. I kind of ignores that until now. I now realise its not normal for a healthy 23 year old to have it and it could be a sign of other auto immune diseases that could be causing the pains in my joints
  • I am honestly not sure what to do with the Lyme diagnosis. I certainly don’t want to try long term meds based on a diagnosis the none of the medical profession I have seen believe in. It’s a really confusing one.

Apologies for spelling and grammar , I am on an iPad

Well, if it was me, I’d be banking on what a tropical disease specialist is telling you, what randomised controlled trials tell us about long term antibiotic efficacy (nil) and not what people on the internet are saying about it.

dizzyk - have you tried any migraine meds?

I’ve tried amitriptyline and they made me really ill. I was only on a very low dose but they left me near incapable of walking. I got prescribed inderal but I have yet to start taking it because I had such a bad experience with amitriptyline. Even if migraine meds help with my dizziness + head pressure, which would be amazing, they are not going to help with my joint pains (anyone i have spoken to has said joint pain is not a symptom of migraines). I can’t exercise anymore, which is driving me nuts because i have such pain in my knees.