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Persistent symptoms for months. Western Blot IGG P41 present only.





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Western Blot Lyme IGG P41 Present. Ongoing symptoms for months.


I have posted my symptoms in other forums and in the neurology forum.  I have now been tested Western Blot Lyme and IGG P41 was present.  Could this all be due to Lyme or some other bacteria?

Hi, I am a 46 year old male. For the last 8 months I have had some strange health issues. I was completely healthy until then. The first symptoms were a general feeling of unwell, change in voice, brain fog, itchy skin, nausea, headaches, rattling/buzzing feeling in my chest and face, etc.

I then started to get weakness in my legs and pain in my thighs and legs. I then experienced a burning pain in my upper back from shoulder to shoulder.

I still have many of these symptoms today, but now I also have a tremor in my upper body and twitching in my calves. If I go for a jog or try to workout the calf twitching gets worse about an hour after the workout and then I experience pain in my upper legs and lower legs. Somewhat of a deep muscle pain.

I also experience a pain in my anal area. This is most pronounced when I lay on my back in bed or try to sit through a movie or just watching TV.

I also suffer from anxiety and insomnia. I can usually fall asleep, but I wake up around 4 or 5 in the morning and I am unable to fall back to sleep.

I have had all types of blood tests and most everything is normal. I am seeing a naturopath that has me on multi-vitamins, probiotics, calcium powder, magnesium powder, vitamin D liquid, fish oil, etc.

I have had a brain MRI that did show lesions in the periventrical and subcortical region, numerous for my age. These are very small lesions. There are no large pronounced lesions. My spinal tap was normal. EMG normal. Spine X-ray normal.

The reason I come to this forum, not only because of my symptoms, but I saw another neuro for a second opinion in CA. She ran a Lyme Western Blot. The only thing that showed present was IGG P41 ab was present or abnormal.

My research on the internet says that most that are familiar with lymes would say this is proof I have lymes. Should I move forward with the Ingenix test? I have not spoken to my neuro about this, she has been out of town for the holidays.

I live in Nevada, but I was in Montana hiking etc a several months before my health issues started. I don't remember any bites, but I have had some weird red bumps on my arms, back, buttocks and legs of late.

idiocracy | Dec 30, 2015
8 Responses
Avatar universal
Welcome to MedHelp Lyme --

You are asking good questions, and that is the best approach to dealing with Lyme:  don't just wait for the docs to figure out what's ailing you, because the medical profession is in chaos about Lyme disease and other infections ticks often carry.

"My research on the internet says that most that are familiar with lymes would say this is proof I have lymes. Should I move forward with the Ingenix test? I have not spoken to my neuro about this, she has been out of town for the holidays."  I had a similar introduction to Lyme:  I was ill in a strange way and saw many kinds of MDs trying to get a diagnosis.  

I got various vague responses from all the docs (such as: "I know you are ill, but I don't know what it is" all the way down to calling it a bite or rash that would likely go away from all the docs) -- except Doc #20, who tested me for Lyme.  The test came back positive! -- but the doc said very gently, "I would say you have Lyme, but I have other patients with Lyme, and they are all ... near death."  Therefore, according to the doc, I could not possibly have Lyme -- and this was from a pleasant, experienced, well-educated MD!  .... and there are many, many MDs who just as clueless, because the medical profession .

It happens that an old friend of mine from years before had gotten Lyme, and I knew for sure she was still alive and kicking, so I figured there was a way out, now that I had a diagnosis.  (This goes to show how uninformed and downright wrong many supposedly well educated and experienced MDs are about Lyme.)  

Like you, I didn't recall any bites, nor did I have even the red bumps you had in various places. Lyme is tricky like that:  not only does it affect different people different ways, but the "Lyme" ticks often bring with them entirely separate *diseases* that need to be tested for, based on the patient's symptoms:  babesiosis (which I also was positive for), bartonella, Ehrlichiosis, and few others.  The overlap of symptoms among the various infections confuses the docs, since they seem to be accustomed to seeing one thing at a time.  ;)

How your bites and bumps and rashes look is something to show the current doc, and I would suggest you take photos (cellphone fotos are fine).  Put a ruler next to the bites so the docs can see the size and also the progression of the lesions.  It's not the final answer on what you have, but it's data for the doc that's important to show him/her.

You say that you don't "remember any bites, but I have had some weird red bumps on my arms, back, buttocks and legs of late."  Again, take some quick photos and show them to the doc.  If the bites/rashes etc. expand (as circular rashes can), do update photos so the doc can compare what the rashes looked like in various stages. Not all docs are interested in that, but it can't hurt to tote the fotos along and show the doc.  More data is good -- and keep the fotos for future docs ...  I never had any visible rash, but if I had, showing them to the doc in show-and-tell foto fashion usually gets their attention, so I would do it.  Also put a ruler or measure next to the rash if you can do that and juggle the camera ... more data is good data, and docs love fotos.

Some of the muscle twitching and discomfort may be from low magnesium (Mg) ... Lyme ticks use up Mg in their reproductive cycle, so it's easy to get low levels of Mg ... and I have also read that the American diet is often quite low in Mg, so if the Lyme ticks are using up an already low resource, then the twitching could result.  Be sure to tell the doc, and fotos are a plus.  (I had one doc tell me I would just get diarrhea by taking Mg, but I never did ... I think because I was already low in Mg that supplements didn't go over the top into diarrhea.)

(I see you have a list of vits and supplements from the naturopath:  be sure that you have an accurate and complete list of each such thing you are taking, stating the type (such as 'magnesium malate') and the dosage.  Brand name can't hurt to list either, since many supplements pack more of a punch than others.)

                    [see part 2 below]
Avatar universal
                    [this is part 2]

===========================
You say, "I have had a brain MRI that did show lesions in the periventrical and subcortical region, numerous for my age. These are very small lesions. There are no large pronounced lesions. My spinal tap was normal. EMG normal. Spine X-ray normal."  Be sure your next docs (including any Lyme docs) are aware that these tests were done, so the doc can get copies from your previous doc if you don't already have them.  The data may be interpreted differently by a Lyme doc than by others.

You say, "The reason I come to this forum, not only because of my symptoms, but I saw another neuro for a second opinion in CA. She ran a Lyme Western Blot. The only thing that showed present was IGG P41 ab was present or abnormal."  

I have read that the Western blot test is not necessarily accurate, because it can too easily miss a positive result, and end up with a mistaken negative result:  'No Lyme here.'  This can happen because the Lyme bacteria are able to suppress the activity of the immune system.  Test result:  "No Lyme here", even though Lyme are present.

You say:  "My research on the internet says that most that are familiar with lymes would say this is proof I have lymes. Should I move forward with the Ingenix test?"  Yes, I would, and I am glad I did.

You say:  "I have not spoken to my neuro about this, she has been out of town for the holidays."  She may tell you it's not worth doing, and if she refuses to order the testing, then consider going to another MD for a second opinion.  You don't need to tell Doc #1 that you are doing so.

You say, "I live in Nevada, but I was in Montana hiking etc a several months before my health issues started. I don't remember any bites, but I have had some weird red bumps on my arms, back, buttocks and legs of late."  Then you have more marks than I ever had ... Take some cell photos of them to the next appointment with the doc, and if you can put a bit of a ruler next to the bite mark(s) so the doc can judge.  Also date the fotos so the doc can see how the bumps etc. progress over time.

You say:  "I have had a brain MRI that did show lesions in the periventrical and subcortical region, numerous for my age. These are very small lesions. There are no large pronounced lesions."  I don't know if brain MRI is useful in Lyme etc. diagnosis ... what does your doc say about it?

You say:  "The reason I come to this forum, not only because of my symptoms, but I saw another neuro for a second opinion in CA. She ran a Lyme Western Blot. The only thing that showed present was IGG P41 ab was present or abnormal."  You may wish to consider seeing another kind of doc ... neurologists are not all experts in Lyme disease and diagnosis.

"Should I move forward with the Ingenix test? I have not spoken to my neuro about this, she has been out of town for the holidays."  Yes, I would take the IGeneX tests, but don't be surprised if your neurologist declines to test or, after testing, dismisses the results.  Neuros just don't tend to see the world the same way as Lyme docs.  

I would look for an ILADS-member doc for additional testing, taking copies of ALL your prior tests with you for comparison.

Best wishes -- and let us know how you do, okay?
Avatar universal
Hi Jackie,

I appreciate all your comments.  You have provided some amazing information.  
I did take the Ingenix test through my naturopath.  I am currently waiting for the results.
I have read that fatigue is a big part of Lyme's disease.  Was this one of your symptoms?  I find that I am not really fatigued.  I mean, I do have brainfog after doing something that before all this happened was a piece of cake like hanging out with friends or talking on the phone for more than 10 minutes.  So, I guess that would be considered fatigue.  But, I would say I have more anxiety than fatigue.  To the point that I can no longer relax.  I guess it is my mind racing and trying to figure out what is going on with my body.
I did read that Lyme's disease can cause brain lesions.  I think that is why the second neurologist I saw wrote down for me all the things she must rule out prior to making a diagnosis of MS.  Lyme's disease was at the top or her list.
Avatar universal
Glad to hear you are pressing ahead.  Fatigue is common, as is 'brain fog' -- meaning mild confusion, which in me felt like a slight-to-middling hangover AND a mild case of flu.  Your symptoms are unique to you, so don't try too hard to run a checklist of other people's symptoms.

One of Lyme's tricks however is that everyone is different in their symptoms, which I think is one reason some docs don't consider Lyme in their possible diagnoses.  

Also co-infections (non-Lyme infections carried by the 'Lyme' tick in a good number of Lyme patients) have their own set of symptoms, which creates confusion in docs and patients as well, because the symptoms all all mixed once they are in the body.

If your IGeneX test comes back positive, and if your neurologist ignores it, then I would find a different MD to proceed with .... no need to say that to the neuro's face, because you might need him/her going forward ... but be aware that Lyme is often not taken seriously by docs who mostly do other kinds of care (such as neurology).  My Lyme doc started out life as an immunologist, but was wise enough not to always see patients through the lens of *only* immunology.  That's the way it should be, but the fragmentation of the medical profession into ever-narrower specialties can cause the docs to overlook something new and weird like Lyme.  

Let us know how you do -- all good wishes!
Avatar universal
Hi Jackie,

Well, I got my Ingenix Lyme results.  They were all negative other than the P41 band.  Ingenix says I do not have Lymes disease.  I did not test for co-infections, but I will move on and accept that my symptoms are due to something else.  Once again, I appreciate you taking the time to respond to my posts.  I wish you the best in your quest for healing.
Avatar universal
Thank you for posting about the test results.  I know you are worn out from not feeling well, and now seeming to find a dead end with possible Lyme infection ... but you DO have something, and you deserve to *feel* well again, not just on paper.

It is quite possible that you do not have Lyme, but that you do have something that needs treatment.  I'm not medically trained, nor is anyone here that I am aware of, so please, please follow your own instincts and do not give up finding out what is ailing you.  

When you say "IGeneX says I do not have Lyme", that is their *opinion*, and they have never examined you or taken your history or looked at other testing you have done:  IGeneX is looking through a microscope and through a narrow list of possibilities.  A wise MD would look at the whole picture that you present, with test results and data and your physical exams.  You've seen a neurologist, but as said above, they don't tend to look through the same lens as a Lyme doc.  

You deserve to be well, and you are working hard to do so.  I would, if you were my friend or my family, ask you to consider as suggested above:  "look for an ILADS-member doc for additional testing, taking copies of ALL your prior tests with you for comparison."  So far, it sounds as though you have had some testing that has interesting data, but in your situation, I would want someone with the 'big picture', viewing all the tests and all the commentary from other docs and from labs.  

You have commented clearly which things are negative, but taking the extra step of seeing an MD who sees a larger view of ALL these tests and observations and symptoms, all woven together could result in a different conclusion or direction ... because that is how the human body works.  

You have done much good work to figure this out, and I would, were you my sibling or best friend, urge you to take just one more step and get a wise MD who understands Lyme etc. and ask for a big-picture review of all the data.  Don't try to be your own doc.

Sorry to harangue you, but it is with all good tidings for your future and your health.  

Please visit us any time here on MedHelp --  
Avatar universal
Hello. I have seen a couple of your posts on different forum sites. I've been going through somewhat similar symptoms to you. I was a healthy 26 year old, and within this past year developed constant muscle twitches (especailly in calves), fatigue, tingling, muscle aches etc.. I also tested positive for Igg p41 ab on the lyme test but that was it.

I'm wondering what became of your issues? Did you ever get accurately diagnosed. I am so tired of dealing with these constant health issues,
Avatar universal
Hello. I have seen a couple of your posts on different forum sites. I've been going through somewhat similar symptoms to you. I was a healthy 26 year old, and within this past year developed constant muscle twitches (especailly in calves), fatigue, tingling, muscle aches etc.. I also tested positive for Igg p41 ab on the lyme test but that was it.

I'm wondering what became of your issues? Did you ever get accurately diagnosed. I am so tired of dealing with these constant health issues,
2 Comments
I'm sorry you are having health issues.  It has been a long journey for me.  I am much better, but I will most likely have leg issues for the rest of my life.
My only recommendation is to find a good trustworthy naturopath or integrative medicine MD.  Unfotunately, most of these folks are out of pocket, but they are well worth the expense.  There are also a lot of good resources on the web, but be leery.   As I mentioned before, the web is filled with people who present themselves as someone totally different than who they really are.
I have found certain on-line MD sites such as Dr. Rawles to be very informative.
I wish you the best and remember, you are not alone in what is happening to your health.  I have communicated with hundreds of people that are experiencing unexplained or what all the licensed MD's I visited called, "idiopathic" issues.
Were you ever diagnosed with something specifically? Thanks for your reply.
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