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» LymeNet Flash » Questions and Discussion » Medical Questions » My husband is getting better!!

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Author Topic: My husband is getting better!!
mfrfr
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Member # 4738

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Hi all. I haven't posted much here as you can see, but I have been reading lyme net since the beginning of my husband's treatment. I just wanted to share a positive story for those of you that are running out of hope. Lord knows we have been there for way too long.

1 1/2 years ago I truly saw no end in sight. For over a year my husband has been fully disabled by lyme and/or coinfections. He had been getting sicker and sicker for a number of years before we figured it out. Before he was diagnosed his spleen was removed due to severe enlargment with no true explanation as to why. He believes he was infected about 13 years ago.

He has been on doxy, zithromax, biaxin, heparin injections, flagyl, opiates, a little bit of rife thrown in...who knows what else. He tried hormone therapy but it didn't feel right for him so he nixed it. The real turn around for him has been the latest combo that he is on- quinine and clindamycin rotated with quinine and biaxin. I guess that means that babesia was his main problem??

Let me tell you- his turn around has been unbelievable. In the past 3-4 months he has made an almost complete recovery. He's got a bit of joint pain, but it is bearable and he can deal with it no problem. He has gotten off of pain killers (he had gotten completely addicted to them), returned to work, works out for 1-2 hours per day, and is a completely functional member of the family. He actually wakes up in the morning and has a full day. He feels good!

I'm afraid that by saying it that I will jinx it all, but here goes...my husband is getting well!!

Of course we are so scared that he will backslide when he is done with the combo he is on. Our plan is to stay on it until he completely levels off and then do the housekeeping with rife. His dr. also follows up the quinine combo with rifampin and then iv rocephin. I don't know if we will go there or not.

Anyhow, I hope this gives someone out there a glimmer of hope.

Take care,
Mary


Posts: 25 | From CO | Registered: Oct 2003  |  IP: Logged | Report this post to a Moderator
Lymetoo
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That's wonderful news, Mary! Thanks for sharing that inspiring story with us!

It helps to emphasize what many of us here have been preaching for a long time. Get treated for babesia no matter what your test results say!

Keep us posted and maybe you could add your husband's story to our "Success Stories" link?

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

------------------
oops!
Lymetutu


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pippy
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Co-infections are downplayed by Steere et al.
Here is a response from Stricker et el. RE: co-infections:

Coinfection in Patients with Lyme Disease: How Big a Risk?

Raphael B. Stricker,1 Andrea Gaito,3 Nick S. Harris,2 and Joseph J. Burrascano4

1Department of Medicine, California Pacific Medical Center, San Francisco, and 2IGeneX Laboratory, Palo Alto, California; 3Division of Rheumatology, Morristown Memorial Hospital, Morristown, New Jersey; and 4East End Medical Associates, East Hampton, New York


Reprints or correspondence: Dr. Raphael B. Stricker, California Pacific Medical Center, 450 Sutter St., Ste. 1504, San Francisco, CA 94108 ([email protected]).

SIR--In their study of coinfections in patients with Lyme disease, Steere et al. [1] found a 4% rate of coinfection with Babesia microti or Anaplasma phagocytophila in patients with an erythema migrans rash that was culture-positive for Borrelia burgdorferi. This coinfection rate was significantly lower than the average rate (21%) reported in other studies cited by Steere et al. [1], and the authors explain the discrepancy by alluding to "methodology" as a principal factor. Their explanation is probably correct, but not in a positive sense.

In studying only patients with an erythema migrans rash, the authors excluded perhaps ⩾40% of patients with Lyme disease who do not develop this rash [2, 3]. In fact, the same investigators previously reported a 26% rate of coinfection with B. microti or A. phagocytophila in patients with rashless Lyme disease [3]. Furthermore, Steere et al. [1] excluded 19% of patients with erythema migrans rashes that were culture-negative for B. burgdorferi. Because patients with Lyme disease do not always have positive skin culture results using current techniques [4-6], this patient group should have been included in the analysis.

A bigger problem with the study concerns the timing of serologic testing for coinfections. This testing was only performed at the time of erythema migrans appearance and then again after 3 weeks of antibiotic therapy. Serologic testing in this manner probably occurred too early or too late to detect an antibody response to the coinfecting agents [6]. Finally, it appears that PCR testing was only performed for patients who were seropositive for B. microti or A. phagocytophila. Because of the possibility of false-negative results of serologic testing , as described above, all patients should have been tested by PCR at repeated intervals to screen for coinfections. Thus, the low coinfection rate may have been due to methodological flaws in the study.

The results presented by Steere et al. [1] give a false impression that coinfections are rare in patients with Lyme disease, and this erroneous assumption may persuade health care providers to ignore persistent symptoms of polymicrobial infection in these patients. Coinfection with B. microti or A. phagocytophila in a mouse model of Lyme disease is associated with an altered immune response and exacerbation of symptoms of disease [7, 8]. Furthermore, newer coinfecting agents need to be considered in cases of Lyme disease, including the Babesia species WA-1 strain and Bartonella henselae [9, 10]. A recent study from California found a serologic prevalence of 23.5% for Babesia WA-1 in patients with Lyme disease in that state [9]. The true risk of polymicrobial infection in patients with Lyme disease requires better evaluation with more thorough serologic and molecular testing for known and emerging tickborne coinfections.

References
1. Steere AC, McHugh G, Suarez C, Hoitt J, Damle N, Sikand VK. Prospective study of coinfection in patients with erythema migrans. Clin Infect Dis 2003; 36:1078-81. First citation in article | Full Text | PubMed
2. Harvey WT, Salvato P. "Lyme disease": ancient engine of an unrecognized borreliosis pandemic? Med Hypotheses 2003; 60:742-59. First citation in article | PubMed
3. Stricker RB, Phillips SE. Lyme disease without erythema migrans: cause for concern? Am J Med 2003; 115:72-3. First citation in article | PubMed
4. Zore A, Ruzic-Sabljic E, Maraspin V, et al. Sensitivity of culture and polymerase chain reaction for the etiologic diagnosis of erythema migrans. Wien Klin Wochenschr 2002; 114:606-9. First citation in article | PubMed
5. Liveris D, Wang G, Girao G, et al. Quantitative detection of Borrelia burgdorferi in 2-millimeter skin samples of erythema migrans lesions: correlation of results with clinical and laboratory findings. J Clin Microbiol 2002; 40:1249-53. First citation in article | PubMed
6. Phillips SE, Bransfield R, Sherr VT, et al. Evaluation of antibiotic treatment in patients with persistent symptoms of Lyme disease: an ILADS position paper. Available at: http://www.ilads.org/stricker.htm. Accessed on 25 May 2003. First citation in article
7. Thomas V, Anguita J, Barthold SW, Fikrig E. Coinfection with Borrelia burgdorferi and the agent of human granulocytic ehrlichiosis alters murine immune responses, pathogen burden, and severity of Lyme arthritis. Infect Immun 2001; 69:3359-71. First citation in article | PubMed
8. Moro MH, Zegarra-Moro OL, Bjornsson J, et al. Increased arthritis severity in mice coinfected with Borrelia burgdorferi and Babesia microti. J Infect Dis 2002; 186:428-31. First citation in article | Full Text | PubMed
9. Stricker RB, Harris NS, Yong DC, Winger EE. Clinical and seroepidemiologic characteristics of Babesia WA-1 coinfection in patients with Lyme disease in California [abstract 309]. J Invest Med 2003; 51(Suppl 1):S145. First citation in article
10. Eskow E, Rao RV, Mordechai E. Concurrent infection of the central nervous system by Borrelia burgdorferi and Bartonella henselae: evidence for a novel tick-borne disease complex. Arch Neurol 2001; 58:1357-63. First citation in article | PubMed


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lla2
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Pippy..why would you post this and confuse newcomers when we all know what an *** Steere is?

like lymetoo says...TREAT COINFECTIONS WITHOUT POSITIVE TESTS...IT RESULTS IN GREAT OUTCOMES....

lISA


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lou
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I believe the incorrectness of Steere, et al was the point of the article, right? And also the higher rate of co-infections than is usually thought, at least by most docs.

So glad Mary's husband is seeing some progress!

Co-infections just aren't getting the attention they deserve from mainstream/conventional medicine. The press release just issued about ehrlichiosis by NIH said that three hundred some cases were reported in 2003. This is a nationally notifiable disease. Talk about underreported!!! Got to think it is partly that no one much is testing, and if people are treated with doxy for lyme, it is hitting ehrlichiosis, even though no one suspects it is even present.


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Lymelighter
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quote:
Originally posted by Lymetoo:
[b]Get treated for babesia no matter what your test results say!

[/B]


Yes, congrats Mary & Amen LT!


Posts: 1010 | From Mars | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
krazykt1
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Mfr, Could you elaborate on what you mean by "fully disabled" Could you hubby walk/drive? That is good news! Congrats!!
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DolphinLady
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Thank you for giving me hope and inspiration!!!

I wish your hubby all the best in maintaining newfound wellness!!!

Cheers!


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pippy
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mfrfr,
ooops! So Sorry! I posted this here by mistake...

Congratulations on your husband's recovery and thank you for sharing it! It is good to hear about people getting better!


Posts: 446 | From California | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
   

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