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Posted 9/3/2012 12:32 AM (GMT 0)
Hi all,

   I am a 29 yr. old male graduate student who has not felt right in almost a year now. Things began last November, and though I have noticed some slight improvement with supplementation, I still do not feel like myself. Let me first list the symptoms I have been experiencing over the past 10 months: (I apologize for the length I am just so frustrated and don't know where to turn.)

   1) Extremely fragmented sleep and insomnia/terible sleep quality- At first, I couldn't sleep at all. Now, I am usually able to fall asleep fine but cannot stay asleep for more than 3 hours tops. I wake up constantly. I still dream so I know I am going through the sleep stages but I cannot stay asleep. First my primary dr. treated me for insomnia. I have been put on a variety of sleep meds and none have helped with sleep quality. Also more alert at night than early in the day. And I do not take any presciption sleep meds now just valerian occasionally.

   2) Fatigue and low energy- It is often really bad to the point where it affects me getting through the day. I often feel out of it, in a fog, don't think as clearly, problems concentrating, and don't have the energy I used to for whatever reason. Very frustrating to say the least as I exercise and try to stay in good shape. Also I sometimes get fatigued after minimal exertion. This also affects me in school as well; as the poor concentration is a big hindrance.

   3) Worsened allergies- I had to get allergy shots from about the age of 14 to 18. Since then, I have taken Claritin and the last several years my seasonal allergies rarely bothered me much. However, this spring and summer my allergies have been the worst since I was a teenager by far. And the Claritin usually has not helped all that much.

   4) Digestion problems/changes- All kinds of changes/problems here do not want to get too graphic but notice food in stool and changes in stool. Increase in gas, food intolerance as well with occasional stomach pain and poor digestion overall.

   5) Cognitive issues- Again, similar to the fatigue issues listed above. I have a hard time concentrating and get easily distracted, which is a problem I never used to have. It also seems harder for me to process information for whatever reason.

   6) Changes with eyes- Increased pressure in head, floaters and spots, occasional blurry vision and teary eyes as well.

   7) Joint pain- Neck, back, and foot pain especially.

   8)Mood swings- Sometimes real bad, "down in the dumps" more than I ever have been.

   9)Low libido/HPA- Sometimes unable to "perform," again something I have never experienced. Also very frequent urination.

    - I also have noticed alcohol affects me more in that I will get a bad hangover even if I only have like 2 drinks.

   Thoughts:

   Last winter my primary dr thought I was depressed. Was prescribed lexapro and I didn't really notice much of a difference. I do not subscribe to the depression theory; I have a girlfriend who I am very happy with and this stuff is not going away. Dr. also suspected low testosterone; was sent to an endocrinogolist who said my test was low-normal but not low enough to be treated for low t. I also was given a saliva cortisol test that showed very low cortisol production. For a time I suspected low t or adrenal fatigue and/or candida/liver toxicity?

   I became frustrated with my general dr at school last spring so went and saw a doc who sepcializes in hpa disorders (low test, adrenal fatigue, etc) and who treats lyme. He did a bunch of tests on me, including a cd57 and eventually an igenex panel.

   Test Results:

   CD57 (Labcorp)- 44 L/ul          Range: 60-360

 

The doc said this cd57 result was very worrisome so he ordered an Igenex panel. Igenex results:

 

   IFA- 40-Equivocal

   IGM- **31 IND

             **41 ++

             **83-93 +

   IGG- **41 IND (everthing else negative)

 

   My doc ordered this test last April and we recieved the results on April 24th. He felt I tested positive for Lyme. Because I left the area to come home for the summer, he was hesitant to start me on anti-biotics and instead gave me a bryon white formula to take over the summer. I came home with the expectation of trying that and then coming back to school in the fall and resuming treatment with the doctor.

   When I brought my test results home, my parents faxed them to my aunt, who works at a hospital in Connecticut that supposedly was one of the first to treat lyme. A doctor there looked at the igenex results, said their lab isn't credible, and not to worry I don't have lyme disease. Based on this info, I tried to go through my summer and see if things got better. They haven't really and I still do not feel like myself.

   Where to go from here:

   If someone on this board could interpret my test results and symptoms above I really would appreciate it. I do not know who to believe about lyme or where to turn. All I know is I do not feel right. There are also some other things I have thought about too; I have ate a ton of mercury over the years and I wonder if I suffer from mercury toxicity. When I told my general dr about this last winter she kind of laughed off the possibility. Until this past year I have had excellent health and have never been to the hospital much. My experience with our health care industry has been awful and I have very little confidence in healthcare professionals.

   I do not ever remember being bit by a tick but I have spent a ton of time in the woods over the years and. I really am curious about the low cd57; what else could cause a low cd57 test? And by my interpretation I am WB positive according to Igenex standards? Is Igenex a reliable lab? I really am just looking for advice from any knowledgeable members on this board. I do not know where to turn next and I am so sick of feeling like this. I really would like to find a doctor in my area who is knowledgable about this disease. I am sorry for being so long winded and thank you to anyone who replies it is sincerely appreciated.

 

 

Posted 9/3/2012 1:05 AM (GMT 0)
I am utterly appalled at the doctor that said you don't have Lyme disease. What else does he need? The guilty Lyme carrying tick to confess that he bit you? Good lord! Make sure you go back to your original doctor when you start school and let him treat you. I have Bartonella as well as Lyme, and Bartonella is known for causing foot pain. All the other symptoms are spot on as well--especially the CD-57! My doctor said it takes a long time for your CD-57 numbers to drop. Yours is really low. Mine is 70 and she told me that was low.
As far as Igenix is concerned, I did not use them personally but I'm pretty sure at least half the people on this board have and I have NEVER heard one bad thing about their lab. My primary care scoffed at the fact that I had labs done outside the system I belong to and my response to her was that I dont care if the kid down the street performed the tests my blood is clearly infected and I will treat it appropriately with or without you. You will read countless stories on this board about doctors denying that someone has Lyme. It is a very strange phenomena that has yet to be explained.
At any rate, you have a positive Lyme test, get treated for it before it really starts to wreak havoc!
Good luck!
Posted 9/3/2012 1:06 AM (GMT 0)
BTW, Bartonella is also known for wreaking havoc on your bladder and reproductive organs!
Posted 9/3/2012 3:18 AM (GMT 0)
Hi sox2007 - welcome to the forum! Sometimes it provides an odd sort of comfort to know that your story is very similar to many of us here. We've all been through the ringer with these seemingly unconnected symptoms and been told so many different things by doctors - it's hard to know what to believe or where to turn!

Lyme disease is unfortunately a very controversial illness - a lot of us have had positive tests or strong clinical signs and have had doctors (often infectious disease specialists) tell us that we DEFINITELY do not have lyme disease, only to be left to pursue alternative treatments for years for other similar conditions, and then often we find ourselves back here, dealing with lyme all over again! I wish I could give you the exact answers you're looking for, but a huge part of the problem is that lab testing in general isn't 100% reliable for a few reasons. The bacteria you're looking at with lyme disease is pretty smart - it evades immune detection and can even shut off the parts of our immune system that would recognize it (these are the antibodies being tested). It's also a spirochete, and they prefer collagenous tissues in our bodies rather than blood, making it that much tougher to get an accurate blood test. There are also many different strains of lyme disease, and if the ones you have don't match up to the ones being tested for, then you obviously won't have a positive test!

I know this is all strange and confusing, but we're here to help however you can. What you need to do to sort this out is find a lyme literate medical doctor (LLMD) - I'd suggest posting a new thread entitled "looking for LLMD in..." near your area so our members can send you recommendations. These doctors are the true lyme specialists who follow current guidelines for diagnosis and treatment (including testing for co-infections) and understand the need to make a clinical diagnosis rather than relying on lab tests. I'd also suggest looking through the "new to lyme" thread - it's a great place to get started when trying to understand all of this confusing information regarding this disease.

I can't tell you whether you do or don't have lyme disease, but I can say that your symptoms do fit the description, and you do have positive bands so that means something, and to date there aren't many other things known to depress the CD57 - all together I'd say it's definitely a good idea to pursue this further. I'm sorry you had to deal with being given incorrect information - it's so frustrating and so unfair but we really do understand. We're here to help however we can - any questions you have or if you just need to vent, that's what we're here for!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 9/3/2012 1:30 PM (GMT 0)
Hi sox2007,

So sorry you are going through so much lately. I just want to mention that you need to enable an e-mail address so others can give you info on ILADS lyme literate doctors after you post a request for doctors near your area.

Patty xo
Posted 9/3/2012 2:43 PM (GMT 0)
Hi Sox,

I just wanted to let you know that I was in a similar situation. My CD57 is below 20, I was CDC positive, and still people tell me I don't have Lyme and Igenex is not credible. You are showing Lyme specific bands on your Western Blot (31 and 83-93). Igenex is credible. It is the best possible lab for Lyme disease testing.

The CD57 is not known to be lowered by much. Lyme is the leading factor for lowering CD57 numbers. A normal CD57 does not rule out Lyme, but a low CD57 definitely should raise a STRONG suspicion of Lyme. Sadly, most mainstream doctors don't even know what the test is let alone how to interpret it. You were lucky to find a LLMD. Most like to see the CD57 above 200 before halting Lyme treatment.

If I were in your position, I would return to the doctor who ran the CD57 for you and begin treatment. Herbs can be just as effective for some people. Many have success with Byron White formulas.

By the way, depression seems to be the diagnosis of choice lately for doctors who don't want to look into the real cause of physical symptoms. I don't doubt that some people truly suffer symptoms of depression, but I think the majority of people are depressed because they are physically sick and not the other way around.
Posted 9/5/2012 1:52 AM (GMT 0)
   Thank you all for offering your input, perspective, and encouragement. I agree with all of you in that I need to pursue this further asap. I am just sick of feeling this way day in/day out and not knowing why. I am going to post a new thread looking for info on llmds in my area (Morgantown, WV/Pittsburgh, PA). Again, thanks to all who responded; this forum is an invaluable resource to someone like me who knows next to nothing about this mysterious disease.
Posted 9/5/2012 5:11 AM (GMT 0)
HI
Wow, yes I have all your symptoms and then more to boot. And my started as a flu last november interesting ,, I think..

tho I have had Lyme type symptoms on and off for years.. this last november it has been steady and getting worse and new symptoms like siezures, headaches, bad insomnia, which only made my body hurt more.. I was barely able to get my dogs fed in the morning. to give you an idea how bad I was feeling..

So I get tested for lyme test WEsntern blot, in June.. get results back early july.. do 30 days anti-boiotic doxy-cycline.. 200 mg 2x a day.. start to feel better,, have some bad herx days..

Which is why I am thinking your doctor did not want to start you on anti-biotics.. ?? But summer off from school would have been a perfect time to my way of thinking.. I have no clue what this bryon white formula he gave you is or does.. will look that up.

I am going to see LLMD In Jan 2013.. this is the soonest I could get in to see him.. he has treated other people I know so they have gotten better. So even tho he will not accept insurance,, because of all the hype and hoopla over lyme.. I am willing to bite the bullet and go see him.

Please watch the documentary UNDER OUR Skin.. this will help educate you. IT is on netflix if you can get that.. or YOUTube..
Best of luck. getting well.
Posted 9/17/2012 8:47 PM (GMT 0)
Sorry you feel like poop. And the mary go round with the Dr. BS doesn't help matters. It gets very frustrating I understand. Many people are getting very frustrated with our medical care these days.
Like people with cancer getting so much worse with chemo therapy.
look into alternative medicine clinics. They are now all over the place. I went all the way from Florida to Scottsdale to be fixed. But there are some here in florida now. Orlando, Dr. Kalidas I think.
Look into Ozone therapy, colloidal silver, hyberbaric beds. And Chelation for your mercury issues.
I had all of mine removed. Tough process but worked for me.
Lyme distroyed my immune system. Alternative medicine re built it.
Posted 9/17/2012 8:52 PM (GMT 0)
yes Igenex is a good company. They are privately owned and not controlled by the CDC to tell you, weather you have enough lyme or not.
With the others they tell you, you are negative because you don't have over 5 bands......yet.
Well Lyme grows every 28 days. so test results change. Collidal silver kills lyme. Some of the lyme strains are resistant to abx. Don't worry, you won't turn blue. Or i would be one very blue gal.
Posted 10/31/2012 9:01 PM (GMT 0)
sox2007,

I literally could have made your post. EXACTLY the same thing here for the most part.

Did your initial issues start with a severe stomach virus?

Have you been diagnosed with a goiter thyroid by chance, that is another thing that i have.

I am almost 24 months into this and things are starting to progress. Now having uncontrollable facial expressions and sounds drive me crazy. Almost like an ability to hear 5x the normal person.

I am about to see a Lyme specialist on Friday due to my current Dr. not willing to treat and test the way i want it done.

I have been through 5 DRs in the past 3 months, and the last two ended with me be escorting out via the police. Not even sure how some of these people have medical licenses, but that is an entire new discussion.

Some other things that you may want to get tested that i had come back out of range.

1. Vit B-12
2. Vit D
3. SHBG
4. Androstenedione
5. Iodine
6. Reverse T3
7. testosterone

If you have had the above already pulled post your numbers for them. i am not a Dr, but as far as endocrinology goes, i am fairly sure at this point i know more than they do.

If you do the above tests, also have a full thyroid panel that includes Free T3, Total T3, Free T4, Total T4. From my research so far it is possible that a majority of this is related to a Reverse T3 issue. However, i still think Lyme is present but a Rt3 issue can cause a lot of both of our symptoms. You can look into this here. http://www.stopthethyroidmadness.com/reverse-t3/


i am still in the process of trying to figure out what the main thing is that is causing all this, and i am leaning towards Lyme.

You may want to have the above things pulled and see where they come in at. If your Dr. refuses to pull them then you can go here and do it yourself. http://www.privatemdlabs.com/

I had to do it all myself because every Dr. that i have seen seems to be beyond incompetent to say the least.

Also i had a cd-57 come in at 20, that i pulled myself last week.

I had Lyme 15 years ago and it was treated and resided. However, now i am thinking that the stomach virus has re-triggered it.

I am not kidding when i say that all of our symptoms are EXACTLY the same. So i will update this thread as i move forward and i suggest that you do as well, as two heads are better than one.
Posted 10/31/2012 9:37 PM (GMT 0)
Also,

Take home antibiotics are not the correct treatment for Lyme. From my current research to treat it correctly needs an IV administered treatment 2x a day. i will confirm this or not during my visit this Friday with the Lyme specialist.

But i can almost promise you that some take home treatment is lackluster at best.

To give you a little history on my experience with Lyme. When i was younger my entire family got it ( 5 people). My brother got it first ( 17 years ago), no one knew what was wrong or what Lyme was. Unfortunately, the results from that Lyme infection for him were irreversible and know he has MS( result of the Lyme), and can hardly walk. Severe brain damage etc etc. Myself and the rest of my family contracted in years later and at that time we knew what to do to treat it, and it was not some take home antibiotic prescribed by some incompetent DR.
Posted 10/31/2012 11:05 PM (GMT 0)
I want to clarify one thing i said above because this forum does not let you go back and make an edit.

Oral Doxy is ok in some cases,; however, in most cases based on my research IV anti. are most suited for treating Lyme.
Posted 10/31/2012 11:58 PM (GMT 0)
Hi The Bearded One,

You should be able to edit by clicking on the pencil icon in the top right of your posts. :)
Posted 2/13/2013 2:57 AM (GMT 0)
Members,
We seem to have a spammer here, so please do not respond to this post, as it only encourages them. I have to leave it up so that Admin can deal with this account.

Thank you.
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