Chronic Lyme

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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Lev
Posts: 4
Joined: Wed 8 Apr 2015 20:24
Location: Italy

Chronic Lyme

Post by Lev » Wed 8 Apr 2015 20:53

Hi everybody,

I have a long story of suffering, of more than 13 yeras. Mine is a mysterious illness which has been diagnosed as Depression, Bipolar Disorder and Chronic Fatigue Syndrome by a number of different physicians.

My main issues are profound fatigue (I live bed-bound or house-bound) and cognitive impairment (I was a brilliant student of Mechanical Engeneering before the illness onset, then I became unable to think clearly and I have really bg difficoulties in reading). For me there has been no cure.

About two years ago I began studying -with enormous difficoulties- some books of Immunology and Microbiology, and as scientific papers about CFS-like illnesses as I could. Then I decided to ask for many blood tests on viruses and bacterias.

So it tourned out that my PCR for Borrelia DNA was positive, although the serology (ELISA + Western Blot) was negative. Nevertheless an Italian physician diagnosed me as Chronic Lyme and I began to take IV and oral ABX.

I have been taking antibiotics for almost six month now, and I only had temporary relief with IV ceftriaxone and with oral amoxicilline. And I wonder if it has been due to the action that betalactam antibiotics have on glutammatergic system, than to the killing of bugs.

Now I've decided to book an apointment with prof Kenny De Meirleir, in Belgium, which is both a CFS and a Lyme expert.

So, this is my sad story. Any advise would be appreciated!

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Chronic Lyme

Post by ChronicLyme19 » Thu 9 Apr 2015 14:08

Sorry to hear you are suffering, it's not fun.
Lev wrote:About two years ago I began studying -with enormous difficoulties- some books of Immunology and Microbiology, and as scientific papers about CFS-like illnesses as I could. Then I decided to ask for many blood tests on viruses and bacterias.
I'm assuming this mean you have been tested for the other tick borne infections? Many times those who get sick with a bad case of lyme have other infections from the tick bite as well, like bartonella and babesia are two of the more common ones. Testing for the coinfections isn't very sensitive either.
Lev wrote: So it tourned out that my PCR for Borrelia DNA was positive, although the serology (ELISA + Western Blot) was negative. Nevertheless an Italian physician diagnosed me as Chronic Lyme and I began to take IV and oral ABX.
This isn't the only reason you may test WB negative, but sometimes, have you had your IgM and IgG levels checked? Sometimes if you are deficient in the overall IgM and IgG levels it may make you test negative if you have an undiagnosed immune deficiency. Your total IgM and IgG levels can be deficient even if your total globulin level is normal, and this is why it may be missed by the doctors on your boodwork. This was why I tested negative. There are many other issues you may test negative too. Did the test report all the western blot bands? Were any of them positive?
Lev wrote: I have been taking antibiotics for almost six month now, and I only had temporary relief with IV ceftriaxone and with oral amoxicilline. And I wonder if it has been due to the action that betalactam antibiotics have on glutammatergic system, than to the killing of bugs.
I'm sorry to hear. Hopefully your new doctor will be able to help you figure out what is permanent damage, vs. what is from the hexheimer reaction to the antibiotics, vs. if you have any other underling medical conditions that are confounding your treatment. Maybe talk with you new doctor about way to help support your body clearing waste from the infection and support your liver function, and keeping the inflammatory reactions down so you don't feel so awful from the medicine.

I wish you continued strength in your treatment, and I hope the new doctor helps you figure out some answers. I'm sorry it's a long road.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Lev
Posts: 4
Joined: Wed 8 Apr 2015 20:24
Location: Italy

Re: Chronic Lyme

Post by Lev » Thu 9 Apr 2015 14:53

ChronicLyme19 wrote: I'm assuming this mean you have been tested for the other tick borne infections? Many times those who get sick with a bad case of lyme have other infections from the tick bite as well, like bartonella and babesia are two of the more common ones. Testing for the coinfections isn't very sensitive either.
I've been tested for babesia (blood PCR), for TBE virus (serology), for ehrlichia phagocitophila (serology), for Rickettsiae (Weil-Felix reaction), for Chlamydia pneumoniae, Chlamydia tracomatis, Chlamydia psittacii, Mycoplasma pneumoniae (all serology).

It was all negative, but IgM for Chlamydia psittacii (which isn't a coinfection, as long as I know) and IgG for Mycoplasma pneumoniae.

I'm waiting for blood test for coxsackie virus and for Coxiella burnetii.
ChronicLyme19 wrote:This isn't the only reason you may test WB negative, but sometimes, have you had your IgM and IgG levels checked? Sometimes if you are deficient in the overall IgM and IgG levels it may make you test negative if you have an undiagnosed immune deficiency. Your total IgM and IgG levels can be deficient even if your total globulin level is normal, and this is why it may be missed by the doctors on your boodwork. This was why I tested negative. .
Well, my total IgG and total IgM are normal. I have an imbalance in IgG subclasses though: IgG-2 and IgG-4 are high, while IgG-1 is low. One immunologist has speculated that this imbalance is due to a chronic infection but it is not specific of any illness.

I had IgG for EBV virus about 13 years ago, but then those IgG disappeared and an immunologist has told me that those IgG were against something else than EBV, others said that it was due to some kind of unknown immunodeficiency. My Lyme doctor said that those IgG were actually against borrelia, not against EBV. It was a cross reaction, according to him.
ChronicLyme19 wrote:Did the test report all the western blot bands? Were any of them positive?
Well, I am positive for p41 IgG and p19 IgG in the Western Blot, but the physician told me that these bands are not specific for Borrelia burgdorferi.
ChronicLyme19 wrote: Hopefully your new doctor will be able to help you figure out what is permanent damage, vs. what is from the hexheimer reaction to the antibiotics, vs. if you have any other underling medical conditions that are confounding your treatment. Maybe talk with you new doctor about way to help support your body clearing waste from the infection and support your liver function, and keeping the inflammatory reactions down so you don't feel so awful from the medicine.
I wonder if any of you has had an experience with the doctor I'm going to, whose name is Kenny De Meirleir. I'm serching for others's experiences.
ChronicLyme19 wrote:I wish you continued strength in your treatment, and I hope the new doctor helps you figure out some answers. I'm sorry it's a long road.
It's a very long road, very difficult. I was a brilliant student many years ago, then I became disabled both mentally and physically, and now many yeras have passed in pain due to this neglected illness.

Thanks so much for your support and forgive my bad English!

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ChronicLyme19
Posts: 564
Joined: Mon 11 Aug 2014 17:42
Location: NY, USA

Re: Chronic Lyme

Post by ChronicLyme19 » Thu 9 Apr 2015 15:24

Lev wrote:Well, my total IgG and total IgM are normal. I have an imbalance in IgG subclasses though: IgG-2 and IgG-4 are high, while IgG-1 is low. One immunologist has speculated that this imbalance is due to a chronic infection but it is not specific of any illness.
Ah, ok I see. It took me about 2 years and 15 doctors before they caught it in me and many years in my friend. She didn't know she had the deficiency too, until I told her my story and suggested maybe it's worth checking. I tell people it's something to maybe check if they have run out of things to check.

You are not alone. Many on here have immunoglobulin deficiencies or have abnormal levels. Seems to be one of the trends, although I don't think everyone has those issues. It might just be something that make us more susceptible to getting sick with a bad case of Lyme. There are a few other threads in the forum on it if you search immune deficiencies or hypogammaglobulinemia.

Here's one:
Can a borrelia infection cause hypogammaglobulinemia?
http://www.lymeneteurope.org/forum/view ... =11&t=5524

You can also check out my post on this thread where I put some of the points together: http://www.lymeneteurope.org/forum/view ... 4&start=10
Lev wrote: I had IgG for EBV virus about 13 years ago, but then those IgG disappeared and an immunologist has told me that those IgG were against something else than EBV, others said that it was due to some kind of unknown immunodeficiency. My Lyme doctor said that those IgG were actually against borrelia, not against EBV. It was a cross reaction, according to him.
That's really interesting.
Lev wrote: Well, I am positive for p41 IgG and p19 IgG in the Western Blot, but the physician told me that these bands are not specific for Borrelia burgdorferi.
Yeh, p41 is just the flagella for all spirochetes.
Lev wrote: Thanks so much for your support and forgive my bad English!
No worries, your english is very good!

Oh, one other thought that plays a role for some of us, have you been checked for MTHFR gene mutations? I know that made a big difference for me and really helped stabilize my mood. I have two copies of the C677T mutation. My doctor recommended taking levomefolic acid and methylcobalamin. Those are the methylated forms of vitamin B9 and B12. It made a huge difference in my sleep quality, which in turn I'm sure affected my mood and my body's ability to recover quicker, strengthen my immune system etc. I know the MTHFR mutations are more common in people in Europe. This is a good intorductory lectrue if you can follow the english: https://www.youtube.com/watch?v=ZA8GUIRqIkE

Both of these are available non-prescription in the US in health food stores:
http://en.wikipedia.org/wiki/Levomefolic_acid
http://en.wikipedia.org/wiki/Methylcobalamin
Half of what you are taught is incorrect, but which half? What if there's another half missing?

Lev
Posts: 4
Joined: Wed 8 Apr 2015 20:24
Location: Italy

Re: Chronic Lyme

Post by Lev » Thu 9 Apr 2015 15:43

ChronicLyme19 wrote: Oh, one other thought that plays a role for some of us, have you been checked for MTHFR gene mutations?
I've been tested for the following genes: MTHFR-C677T, MTHFR-A1298C. Both of them tourned out to have a normal combination of alleles. So apparently this is not an issue in my own case.

Lev
Posts: 4
Joined: Wed 8 Apr 2015 20:24
Location: Italy

Re: Chronic Lyme

Post by Lev » Thu 9 Apr 2015 16:01

ChronicLyme19 wrote: It took me about 2 years and 15 doctors before they caught it in me and many years in my friend. She didn't know she had the deficiency too, until I told her my story and suggested maybe it's worth checking. I tell people it's something to maybe check if they have run out of things to check.
Yes, I've studied about immunodeficiencies, because of my EBV IgGs, which -as I mentioned- disappeared after some months from the flu-like episode. So I've learned a lot about CVID, XLP and other forms of immunodeficiencies from papers and some books.

But in my own case it doesn't seem that I have some kind of immune deficiency linked to the anti bodies production.

I know that seronegativity in Lyme has been described in immunocompetent individuals, as you can see in these two papers:

http://www.nejm.org/doi/full/10.1056/NE ... 2013192203

http://www.ncbi.nlm.nih.gov/pubmed/12189466/

And when you use LTT test for Borrelia checking, you can find that in many cases borrelia infection is seronagative, as it has been demonstrated in this work:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4307574/

But I don't know how much LTT is reliable at this point.

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