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Posted 12/17/2008 8:25 PM (GMT 0)

Hi all, I'm new to Lyme world although not new at all to health/disease related web forums as I have been participating on several thyroid disease related forums for the past 1 1/2 years as I have struggled to figure out how to get my thyroid meds adjusted so that I don't feel bad - I was DX'ed with Hashimotos in 2004.  I'm a 41 year old man currently living in South Carolina.

Now it's looking like a major part of my problem could be LD. I am seeing an integrative medicine doc in NC who is convinced that I have LD and now, he says, we have labs to prove it.  We did a CD-57 which came back at 44 (he says that it should be over 100) and we just repeated the Igenex labs which came back positive or so he says.  I say repeat because I had them run almost exactly 2 years ago when I was first really starting to struggle with some arthralgias and my sister was struggling with SX even worse than mine - we believe that if we have LD we were exposed at the same time in the summer of 2003 when we were both eaten alive by some kind of bug living in our family's vacation home in northern MI.  Neither of us ever found a tick or noticed the tell-tale bulls-eye rash but I understand that that does not even show up much of the time anyway.  The Igenex labs I did then all came back negative.  The labs that we just did a few weeks ago followed a month of Minocin/Zithro/Diflucan and there were some positives (listed below).

My main SX are joint and muscle pain (especially in the spine, knees, hips, back, neck, hands), daily GI upset (rumbling, bloating, gas, abdominal pain), fatigue, insomnia, depression, anxiety, floaters, sensitivity to light, sound and smells, dry and itchy skin and dry eyes.  There are others that I'm not thinking of at the moment - oh yeah, add brain fog to that list - but these are my top 5.

My int-med doc wants me to go back on the ABX for at least 6 months - his regimen is Minocin and Diflucan on MWF, Zithro on Sa and Su and he wants to add weekly Penicillin shots. Actually, he wants me to go on the Marshall Protocol but I'm not ready to live in-doors for the next two years, for those of you who are familiar with the MP.  My local doc who is a DO, and that I like, is going to disagree and not want me to do the treatment - I know, what's new about that, he's not a LLMD.  I have to admit that I have not done enough homework on this yet but I intend to start reading up on it this weekend starting with the material on the Newbies thread.  My sister, who referred me to this forum, is actually quite psyched that I got a DX but I'm having sort of a hard time coming to grips with it b/c I just spent the last many months thinking that my problem was my thyroid and adrenals, reading several books, religiously following listservs, adjusting meds, weaning off of meds (steroids), changing diet, giving up exercise, giving up social life (b/c I feel bad most of the time), etc. and I don't know if I'm ready for a year or more of hell taking ABX that are sure to absolutely wreak havoc with my GI, not to mention the herx if it works.  Sorry, not trying to be a baby, but that's where I'm at right now.  And I will have no support from my wife b/c she's pretty much through after the last several years of trying to figure out what is wrong with me and trying different treatments, and her hands are full with her mother who is dying from lung cancer.

Anyway, I'm posting my Igenex results below.  Any input, suggestions, advice about the labs, my doc's suggested treatment plan for me, etc. would be much appreciated.

Thanks.

IGENEX IGM RESULT

CDC/NYS RESULT

18 kDa.

22 kDa.

**23-25 kDa.

28 kDa.

30 kDa.

**31 kDa.

POSITIVE

NEGATIVE

**34 kDa.

**39 kDa.

**41 kDa. +

45 kDa.

58 kDa.

66 kDa.

73 kDa.

**83-93 kDa. ++

IGENEX-IGG-RESULT

CDC/NYS-RESULT

POSITIVE

NEGATIVE

18 kDa

22 kDa

**23-25 kDa

28 kDa

30 kDa

**31 kDa ++

**34 kDa +

**39 kDa IND

**41 kDa +++

45 kDa

58 kDa ++

66 kDa

73 kDa

**83-93 kDa IND

Posted 12/18/2008 2:46 PM (GMT 0)
Did I violate protocol or etiquette for this board in some way?

Jason
Posted 12/18/2008 4:19 PM (GMT 0)
Hi Frango.  Just wanted to make sure.  I've been on several boards and some can be touchier than others.  My sister said that this one was great with really supportive folks so I wanted to make sure that I didn't get off on the wrong foot.

I've been reading the Burrascano doc and, assuming that I was infected when I think I was - five years ago - and since I spent almost a year titrating up and then back down again on hydrocortisone (thinking that adrenal insufficiency was contributing to my inability to tolerate thyroid meds), it seems like I ought to be talking to my doc about IV ABX instead of the oral, even with the addition of the IM penicillin that he RX'ed.  Like I said in my intro, I'm struggling to come to grips with this DX, let alone with the idea of PICC lines and many months of IV ABX but, if I decide to go ahead with this treatment that seems like the most effective way to go.  No?  Also, I have pretty serious gut SX and I read that one of the benefits of the IV is that it is much easier on the gut than the oral.


Thanks again,

Jason

Posted 12/18/2008 7:43 PM (GMT 0)
Hi Jason,

Like you I'm a newbie to LD. I spent about 4 years being misdiagnosed. The docs saw my facial paralysis and got stuck on Bell's Palsy even though the paralysis had gone beyond a "few months". I've yet to be officially diagnosed with LD, but I have exhibited a lot of the symptoms. The rash, facial paralysis, fatigue, swelling, blurred vision, floaties... My wife looked into LD and so here I am.

I've never been very knowledgeable of conventional medicine - figured the docs could handle that. Once the ball was dropped on my rash, I started looking into rashes. Since a lot of them are viral, I figured the docs couldn't do much anyway. So I looked into strengthening my immune system to fight the virus. In doing so I must have swerved into something good. The radocsh has not recurred, the paralysis is going away slowly and the fatigue has eased.

after visiting some of the forums, I realize that I've not suffered compared to so many folks out there. Now i'm just looking for ideas to fine tune this thing.

Oh my dentist has helped me some because he has a relative with LD.

I'd sure encourage you to look for a lime literate doc that at least has some tolerance for alternative approaches.

Best to you,
Ray
Posted 12/18/2008 7:44 PM (GMT 0)
Wow jasrich, sounds jusk like my symptoms for 3.5 years now.
Posted 12/18/2008 7:47 PM (GMT 0)
rvnut, what where you taking to bump up your immune system? Thanks,
Posted 12/18/2008 10:09 PM (GMT 0)
kendall122,

Start with a good vitamin mineral supplement to build up the health of your immune system. I boost my system with a combination of additional vitamins C & E, folic acid, zinc, selenium, and echinacea. I stopped the boost for a couple of months and the rash started to come back. The rash was gone within a couple of days of restarting the boost.

If you think about doing this, check with your doc to make sure you won't be countering whatever else you're taking.
Posted 12/19/2008 8:25 PM (GMT 0)
I agree with boosting your immune system but I have a question to all. We are always told this crap likes to evade the immune system. SO I wonder just how much a boosted immune system will do with these sly bugs. Anyone able to explain this to me?

thanks
Posted 12/19/2008 8:58 PM (GMT 0)
I seen the stuff about the immune system not being able to deal with LD. But here's an article that seems to contradict that:

http://www.sciencedaily.com/releases/2006/08/060822150046.htm

I'm by no means an expert, but it seems to me that a healthy immune system would strengthen the response of NKT cells. And help explain why my symptoms don't seem as bad as I'm seeing in other folks. And I'm slowly getting better. :-)
Posted 12/19/2008 9:50 PM (GMT 0)
Hi rvnut! Thanks for the website/article.

Welcome to jasrich! Best wishes on your journey back to health.

bablymers mom
Posted 12/20/2008 12:13 AM (GMT 0)
thank you guys for your thoughts on that subject.
Posted 12/20/2008 2:43 AM (GMT 0)
jasrich,

Welcome and hold on to your seat. Here goes: I am someone who believes that antibiotics are needed to kill the lyme bacteria. Adding supplements does not hurt but this is a bacteria that will destroy you slowly but surely, just as syphilis does or tuberculosis. No one would question treating them with antibiotics. Some people may have lyme and not be symptomatic but you are experiencing a multiplicity of symptoms with multiple body systems involved, which is usually what happens as Lyme Disease progresses. So many body systems become involved that when you see all the different physicians they can't make it fit. You begin to realize that no one is really coordinating your care, you are taking a boatload of prescriptions, have had a lot of tests done, and just getting increasingly worse. Most physicians do not know enough about the astounding complexity of the disease nor what may be required to treat it. You already know that infectious disease doctors have been disappointing in helping patients with lyme disease. Many people say to avoid them and it is good counsel. See a doctor who has lots of experience with this infection and who understands that it may take a while to get you well. They may have to try different combinations of drugs to target the disease and co-infections that can come with it. Choose a doctor that comes highly recommended.

I think IV antibiotics are good for those with GI difficulties and it helps bypass any gut absorption issues. You also are getting the maximum impact from the drug via this route. You should not be too worried about the risk - many people do just fine. It shouldn't be taken lightly either but if you are careful about keeping the site clean and dry, have regular blood work done to ensure cbc, kidneys, and liver are ok, then you will be fine.

Thyroid, GI, neurological, depression, anxiety, skin, muscular,skeletal - you sound pretty classic. I found it hard to visit my GP or neurologist and tell them that I was on an IV, and then see them 6, even 10 months later and still be on the IV. But...people will disagree with your choices many times throughout your life. I have always worried about what others thought but not as much any more. You need to to be respectful of others but keep in mind that it is you and your willingness to pursue getting better that is going to get you there. If you listen too much to others opinions you will begin to self doubt and this disease is bizarre enough that you don't need it.

I ended up really ill because I was not treated long enough - twice - once in 2003 and in 2004. In 2007
it kind of hit bottom. Now, after 13 months of IV's of multiple drugs I am doing great. Maybe it won't last forever due to the length of time I went untreated (I suspect 1995 or earlier. I have spent summers outside of Traverse City, Michigan for the last 40 years and oh how I love it! I also live in southeastern PA and we have a serious tick problem). But for now I am about 80% better and I have a life again. I have been fortunate to hear many well known LLMD's speak. Conferences that have been held all over the United States and Europe have some very intelligent doctors in attendance and in my mind the evidence is overwhelming that chronic lyme exists and long term treatment may be required. The sad part is that so many doctors are misinformed. One last comment: I feel the Marshall Protocol is highly questionable and would make anyone even more depressed.

Best wishes and good luck on your search for the direction you want to go in.
bcaring
Posted 12/20/2008 2:51 PM (GMT 0)
Welcome Jasrich!
There is a video on this site envita.com/sections/disease/lyme/default.aspx
(originally linked by martha's vinyard - much thanks!)
that explains the Bb spirochete in detail and how it affects the immune system. I would have to watch it several times to correctly understand it but here goes. . .The bacteria leave their antigen, like a fingerprint, on our tissue so our immune systems believe our own organs, joints etc. is the invasive organism and attacks the healthy tissue. That is why you were misdiagnosed with Hashimoto, an auto immune disease. It is why you have many of your other symptoms. Unfortunatly, you were given steriods which suppresses and destroys your immune system. Your body has not been able to fight off the lyme and recovery will be more difficult because it will take time for your immune system to recover. ABX can only work with a healthy immune system. AIDS patients have no immune system. It is not AIDS that kills the person infected with it. It is whatever virus or disease that their body cannot fight off, including the common cold. You don't want to destroy your immune system!

The spirochete "corkscrew" themselves into our tissue. They can take on 3 different forms, two of which ABX cannot penetrate. One is dropping the cell wall and living in our own cells. The other is in a cyst form. When the Bb is in cyst form you have no symptoms. This can happen periodically on its own. There is often a 28 day cycle of symptoms flaring. You can even feel better for months or years and then suddenly get sick again, often with something completely unrelated (it has just gone to a different location).
ABX drives the spirochete into cyst form, the person feels better, ABX is stopped and then a relapse occurs. There are a few drugs that are believed to be able to kill the cyst form. Bb also likes the brain and spinal cord and many drugs do not cross the blood brain barrier. All of this makes treating lyme very difficult. I see it as a long term disease. It is like having weed seeds in your lawn, that can sprout at any time. You may never get rid of the seeds but if you keep your health optimum with good nutrition and lifestyl, you can keep them at bay. I agree that abx are important to recovery. You probably should not go off abx until you have two months symptom free. Then try herbal remedies to support your immune system. There are some treatments, like MP, that I question. You have to be careful and do a lot of research. Even though the news is bad, the outlook is very hopeful now that you know what it is you are after.
Posted 12/20/2008 7:14 PM (GMT 0)
Hi all,
I haven't been on this board in a very long time. After going to so many doctors, many of whom continue to treat symptoms independently of what is wrong, I got too tired to treat. I am still sick but have no energy left to deal with it.
Last week, my brother, the original poster jasrich, finally got his LYME diagnosis. As you have read, he has been treated for everything under the sun, except Lyme. I was and am very encouraged by his diagnosis, because now people won't accuse him of being a headcase, as many have done to both of us for the past 5 years.
I told him about this board and how many of you (I don't see a lot of my old friends here) helped me through a very rough time. I had the IV antibiotics and orals and should have kept them up, but my GP discredited my blood tests. I know that we are all suffering and I thank you for any advice and support that you can give my brother.
T smurf
Northlover
Posted 12/22/2008 1:19 AM (GMT 0)
bump
Posted 12/22/2008 1:22 AM (GMT 0)
i bumped because i really need my brother to get some answers. he started this thread and it somewhat got sidetracked by a discussion of boosting immune systems. Thanks to those of you giving him feedback.
northlover
Posted 12/22/2008 5:06 AM (GMT 0)
Hello Northlover and Jason,

Jason - you wanted to spend some time this weekend reading and figuring out what treatment course to follow?
This post has kind of been on a winding road so do you have some questions that you would like input on?

As I stated before, I do believe that with your GI issues that IV antibiotics would be best if you can cover it financially. Take Probiotics religiously even if you have to take them in the middle of the night (it gets hard to figure out when you can take them so that they do not interfere with another drug).

I was extremely fortunate and found that my insurance cooperated fully. As I mentioned I dosed at home and you do learn to become very efficient with it.

Support from a loved one, wife, husband, family - You are fortunate that your sister seems to understand and support you. I found that at times my husband had to almost check out emotionally from what was going on with me because I was so sick, so emotional at times, and yes, needy. My world shrank because I couldn't be with people because voices seemed so loud, everything seemed like sensory overload, I was in a lot of pain, and I was very foggy mentally. I felt alone many times, but I had to try to look at it from his perspective at times - it was really hard on him too. In retrospect his job was to keep on going with life and protect himself from being overwhelmed by the financial and emotional hardships. During my illness, he had two serious heart attacks so we were dealing with that also. Needless to say it was a real test of our relationship. Eventually I did counseling with a cognitive behavioral therapist who worked with chronic illness patients and who helped me through treatment. It helped take the pressure off my husband to provide me with support that I wanted, but that he could not provide all the time. Who could? The therapist helped with coping strategies and correcting thinking and tendencies to dwell on issues.
It really helped.
Then I have two small dogs who gave me love all the time and continue to me smile throughout the day.

Right now I think I am about 80% there and feeling so much better has helped us both feel more positive about the future. I should underline slowly. I should also emphasize that you need to be strong and not give up. I wanted to get better immediately but it usually takes time, especially if you have been ill for a while.

What part of Michigan do you have a summer home in? The family has a couple of cottages on East Grand Traverse Bay and as I mentioned I love it up north in God's country. I find the lake water to be very healing. Also, my sister and family live in Charleston, S.C.


Northlover,
I know you would like support for your brother and it sounds like you need some also??? I read that you were treated but maybe not long enough and that you are running out of steam.

Let me know if I can be of any further help.
bcaring
Posted 12/22/2008 5:50 PM (GMT 0)
Bcaring,
Thank you so much for being so caring. (:
Northlover
Posted 12/22/2008 10:53 PM (GMT 0)
Thanks to Bcaring, nefferdun, RVNut and, of course, my sister. I didn't think anyone was following my thread because I checked the box to "notify me of reply postings by e-mail" but didn't get any e-mails. Now I see that lots of you have replied.

Bcaring, we do our vacationing 25 miles NE of Traverse City - Rapid City near Torch Lake.  We love it up there but that's where we think we got infected.

I did do some reading late last week and over the weekend and I spoke to my LLMD again about IV ABX.  He's practices in NC so, thanks to what they did to Jemsek there, he can't RX IV ABX.  He said that he's treated a lot of patients with the minocin/zithromax/IM penicillin with good results and that he would have wanted to try that with me before IVs anyway. I am afraid of what the oral ABX are going to do to my GI over time. I am taking probiotics and I started drinking some kefir this weekend and tolerated it OK.  Is the timing of taking them that important - you mention taking them in the middle of the night?

My sister would be a great support to me - if we lived in the same state but she's still up in OH with the rest of my family and I'm down here by myself except for my wife. We can support each other via e-mail and phone but what I really need is help feeding myself and understanding company. I could support her in other ways if I were in OH (I can't cook but I can fix a computer pretty good :-) ) but I don't want to leave my wife alone now either. After several years of trying to figure out what is wrong with me, and with her mother being DX'ed with lung cancer three years ago and now really battling it (and losing) she's at that checked out and trying to go on with life stage while my world is shrinking as you described.  Being out in public is painful for me most of the time although I continue to try to do some social things with my wife.  I do see a therapist and we're going to see a couple's therapist too. I'm also still working full-time but I don't know if I'll be able to continue if I react strongly to the ABX.  I managed to keep on working for the 6 painful months of weaning off of hydrocortisone but something tells me that the GI and herx reactions from the ABX are going to be a different order of magnitude of suffering.  I hope not.  I'm sure that it varies from person to person but I have not been lucky so far.


This is a pretty tough time for me as I guess is obvious.  I've got a lot of decisions to make and barely enough candlepower to make them with.

One more question - looking at my Igenex labs and low CD-57 count, is there any doubt (beyond the usual with LD) that I have it or should I be seeking a second opinion other than my GP's which is going to be that I shouldn't take the ABX?  It turns out that Jemsek's new office is only 80 miles away.  Of course, he'll charge me $750 just to walk in the door for the first time, even with all of my labs, but if he's one of the best and he's that close maybe I should. Or maybe I should stop second guessing and get on with it.  See, can't make decisions.


Thanks again everyone.  You too northlover who doesn't love the north as much now that it munched on us devil smhair

Posted 12/23/2008 12:53 AM (GMT 0)
jasrich-you mentioned gut issues. I saw in your little bio you take ibuprofen. Can't that be hard on your guts? Just asking.
Posted 12/23/2008 1:57 PM (GMT 0)
hi seeingstars. The NSAIDs can be hard on the gut. I always take mine with food and don't have much trouble - with those. My gut issues are more food and time related, i.e., I have a lot of trouble after eating certain things (I've been gltuen free for about a year now) and I typically have a lot more trouble later in the day and at night. I can also set my watch by when I start getting bloated and uncomfortable every day around 5PM and again sometime after 9PM. One theory is that it's inter-dose withdrawal from the little bit of Klonopin that I take at night, i.e., I've developed a tolerance to it and I need more but I'm not allowing myself to increase the dose because I want to wean off of it. I just can't do that right now due to circumstances - I wouldn't be able to deal with the increased anxiety, sleeplessness, and other nasty SX that accompany weaning off of benzos. I wish that I had never started taking them and resisted it for a while but my docs (not LLMD) finally wore me down.
Posted 12/23/2008 3:40 PM (GMT 0)
I know what you mean about docs wearing you down. You want help and you think you should be able to trust your doc. My first doc was only too happy to prescibe amitriptolin and then lyrica. Anything to get me to shut up about all the pain and my constant dr visits saying I was not getting better. I now don't trust any doc except my current one. I find myself not even liking dr on the street. My kids go to school with some dr's kids and I have a hard time being cordial to the parents at functions. I think too many of them are out for the buck and not out to find the patients problem just mask it. My 2 cents.

Anyway once you get on abx and you have had more time to undo what the "bad" docs did you will see a wonderful difference. It all "unfortunately" takes time.

Stay strong.
Posted 12/29/2008 6:37 PM (GMT 0)
bump


One more question - looking at my Igenex labs and low CD-57 count, is there any doubt (beyond the usual with LD) that I have it or should I be seeking a second opinion other than my GP's which is going to be that I shouldn't take the ABX? It turns out that Dr. J's new office is only 80 miles away from me just south of Charlotte. Of course, he'll charge me $750 just to walk in the door for the first time, even with all of my labs, but if he's one of the best and he's that close maybe I should. Or maybe I should stop second guessing and get on with it. See, can't make decisions.
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