Just got blood work results...help!

[pchelle]

I received my daughters blood work results on Friday and am in hopes that someone can help me understand. She is 16 now and had typical PANDAS symptoms throughout elementary school. We now face severe depression/suicidal thoughts, etc. Doing better or Effexor and Abilify. (horrible past on Zoloft and Prozac!!) Her blood work came back positive for Lyme Disease. Where did she get Lyme? I never remember a tick bite. It makes me wonder if this is something she got from me. Before I got pregnant with her, I had cat scratch fever real bad. (huge lymph nodes, etc.)

 

Also, her blood work showed that her Immunoglobulin G is very low.(5) IGG sterotypes, out of 14, only 2 were in range. Dr ordered a Pneumovax injection to see if this will raise her levels. We are going to do the blood work again in 6 weeks and see if this injection helped and then start on dioxocycline (-1 for spelling) to treat the Lyme.

 

Any thoughts on this? I am so confused!

 

Thanks!

 

Michelle

[peglem]

If her IgG is that low, she already demonstrates immune deficiency, so why the pneumovax? Its generally done to investigate Specific Antibody Deficiency (SAD) to encapsulated bacteria, which can be a qualifier for IVIG. But, if she is already showing generalized immune deficiency...

[rowingmom]

Several families here are dealing with PANS resulting from lyme and/or the coinfections (bartonella, babesia, mycoplasma). My daughter is one of them. If you have had cat scratch fever, you may have congenitally passed bartonella or other infections to your daughter.

 

If your daughter is positive for lyme, it is likely that she carries 1 or more of the coinfections. I would suggest you find an ILADS-trained LLMD (lyme literate medical doctor) as soon as possible. I believe the ILADS website has lists of these doctors for different areas of the US. There are many doctors out there who claim to be LL, but unless they have ILADS training, they usually hold the IDSA ideas on treatment. This is a very controversal subject. If your doctor doesn't believe in long-term abx treatment for lyme you will not change his mind.

 

Many people test negatively for lyme because it suppresses the immune system. They then think because they don't have lyme, they can't possibly have the coinfections either. This is a mistake. Our daughter was negative for lyme (she did have 1 indeterminate lyme-specific band though which was enough to convince our LLMD), but tested positive for bartonella through the Igenex lab. Please have your daughter tested for the coinfections, especially bartonella which can cause significant psychological problems.

 

Stephen Buhner has two good books out on the herbal healing of these infections. Although you will probably want to go the allopathic route at first (we did), his books have very good descriptions of the effects of these bacteria, the cytokine pathways they initiate and ways to address the resulting inflammation.

 

http://buhnerhealinglyme.com/

 

Healing Lyme: Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections

 

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

 

His protocols can be used along with abx treatment.

Edited September 16, 2013 by rowingmom

[msimon3]

Just curious, what were the specific blood work results? While blood results can be helpful, Lyme is still a clinical diagnosis because there is no single test that can definitively say you have Lyme or you don't.

 

The low Ig results are interesting though. Borrelia has been shown to be be immunosuppressive in dogs and mice, and the theory is that this might be true for people as well.

 

Per the CDC, Lyme disease is still defined as an infection by Borrelia burgdorferi from a tick bite. It is plausible to think that Lyme could be communicated by other biting bugs or congenitally. Many many people with Lyme do not recall a tick bite. Many also do not get the bullseye rash.

 

Try seeing an ILADS affiliated LLMD, have a clinical assessment, discuss the possibility that you might also have Lyme and coinfections (like Bartonella/Cat Scratch Fever), and discuss treatment options. Taking Doxycycline alone is not a protocol that most LLMD will recommend, as it has been shown to be effective in killing the bacteria (which is good) however it also has been shown to be effective in mobilizing the bacteria into cyst form (which is not good) at which point the Doxy cannot kill the bacteria. For this reason, many LLMDs will recommend a protocol that uses multiple antibiotics, each that target a specific form of the Borrelia (spirochete, L-form/CWD, cyst).

Edited September 16, 2013 by msimon3

[pchelle]

Thank you so much for the great info! I will read, research and hunt for a LLMD. I will list the results best I can...

Lyme disease antibodies (IGG, IMG) Western Blot

Lyme disease AB IGG WB

(IGG) band 18 kd 23 kd 28 kd 30 kd 39 kd non-reactive

(IGG) band 41 kd 58 kd 66 kd reactive

(IGG) band 45 kd 93 kd non-reactive

 

Lyme disease AB (IGM) WB

(IGM) band 23kd non-reactive

(IGM) band 39 kd 41 kd reactive

[qannie47]

there is no true test for lyme?

[msimon3]

qannie47: I should have said there is no practical and definitive test for Lyme. Any test can have false negatives if the sensitivity is less than 100%, and false positives if the specificity is less than 100%. Most Lyme tests are testing for your antibodies and have considerable false negatives and false positives. A positive PCR test result for Borrelia DNA is the closest thing I have heard of a "true test" for Lyme, but the sensitivity is relatively low to other tests due to the need to capture Borrelia in the blood, then amplify its DNA enough to get a positive read. Cultures and visual analysis can also be done, but tend to be expensive and also suffer from low sensitivity if the Borrelia is not captured in the blood.

 

pchelle: An LLMD would likely consider your test results positive, and I believe those results are also CDC positive because of the two IgM positives on 39 and 41. The Western Blot bands each correlate to specific proteins of one strain of Borrelia burgdorferi (strain B31).

 

Your IgG Bands:

- 41kDa is flagellate protein, not unique to Borrelia

- 58kDa heat shock protein, not unique to Borrelia

- 66kDa outer membrane protein, not unique to Borrelia

 

Your IgM Bands:

- 39kDa is flagellate protein, unique for Borrelia

- 41kDa is flagellate protein, not unique to Borrelia

 

As rowingmom suggested, there may be other infections to deal with as well. Bartonella, Babesia, and Ehrlichia are common coinfections that should also be considered. Some LLMDs prefer to order a coinfection panel, whereas others will make a clinical diagnosis for possible coinfections and treat with a protocol that hits the coinfections with the Lyme as well.

Edited September 17, 2013 by msimon3

[qannie47]

thanks for clarifying

[Dedee]

I agree with rowingmom, you should find a good LLMD. It is good that your doctor tested for lyme but it doesn't sound like he is up to date on treatement. Lyme is usually treated with a minimum of two antibiotics. Using only one is like swatting an elephant with a fly swatter. There is a lot of good information out there on lyme. Arm yourself with knowledge and find a good LLMD.

 

Dedee

[lfran]

I have learned that band 58 is considered significant by European labs. You can check my old posts by searching for band 58 and my name. I posted links in the past

[pchelle]

I can not thank you guys enough for all of this information! Not understanding is a horrible feeling, but I am so thankful that you are guiding me. I will continue to research lyme and go through previous posts. It's so crazy, but as I read through the symptoms of lyme, especially bartonella, I am reading about myself! I've just always blamed my feeling bad on the stresses of life. When I had cat scratch many years ago, I'm sure that I never even took the whole round of antibiotics. (b/c I never do) I will see if we can get a family discount when I find a LLMD. Thanks bunches again!!

[rowingmom]

Do get the Buhner book on bartonella coinfections and you will be up and running when you find a LLMD.

 

We couldn't financially swing having both DD and myself treated for bartonella, so I have been treating myself with the herbals the LLMD and Buhner suggest for the infection. I am a happy, pain-free person again!