Lyme treatment in adults

[Megs_Mom]

Hi, my dh has had migrating pain for last 2 years, with bouts of extreme exhaustion. Pain once "settled" seems to stick even after a 3 month exacerbation remits to about 90%. In next flair up, that area would be worse. All Rheumatoid markers are negative. Has been clinically diagnosed with neuropathy, fibromyalgia, arthritis. Now primarily in hip & neck. We had a crisis (severe back injury) which landed him flat on his back for about 2 months, and delayed treatment further.

 

Ran Igenex: LabCorp p23(+), p41(+) in IgM, Igenex P34 (ind) , p39 (ind), and p41 (+). CBC – total WBC is slightly low 3.5 (4.0-10.5 E3 c/uL). Granulocytes as slightly low: 49.4 (50-70%) and the Lymphocytes as high: 42.1 (25-40%). C. pneumoniae, high. All else normal, we have tested to the max at this point. We just ran a babesia test through Spirostat, but don't have results back - maybe late this week.

 

Started treatment about 2 weeks ago with Doxy, Clotrimazole, Diflucan, Omega 3, Probiotics. At the same time, started physical therapy.

 

He is easily 75% better, although still weak, obviously in back area, although that is also improving. I tend to credit this to abx treatment, he credits to physical therapy. I would think physical therapy is at least part of it.

 

My question is - does longer-term Lyme (he has been suffering off and on for about 3 years now) remit that quickly when treatment is started? And if so, how do you know how long to stay on the abx? I know he'll be ready to stop if the babesia testing is negative. If he does stop, will it return immediately, or is that rather variable as well?

 

We have a daughter with fairly classic PANDAS, responsive to abx as well (Azith, Omega 3, Probiotic, Prevacid, Vit D), in a short period of time, comes back if we take her off it (so far).

[Suzan]

Just sent you a PM and asked about your dh's treatment but had forgotten to come back her and finish reading your post. That is great that he is feeling that much better. That is good news. His test results give me an indication on what the LLMD will do for my dd9 since her's were similar to his (the blot anyway).

 

My dd's both get symptoms back if we back off the abx. Are you going to test Meg for Lyme or have you already?

 

Sorry I don't have experience yet to help you with your question about dh.

 

Susan

[sf_mom]

In November 2009 I took antibiotics for a month. Most of my symptoms relented at that time except for fatigue.... It took 4 months and one cold for all symptoms to slowly return. At the time of cold last March, I felt like I had the flu and body aches lasted about 3 days... intense symptoms and couldn't sleep. Then each month after I would add back symptoms that were familiar.... knee pain, hip pain, leg cramps, night waking, etc.

 

Our LLMD did say how quickly an individual gets sick after going off antibiotics can be very telling. For example, our daughter was sick within a week and why they think Bartonella for her as a co-infection. If it had been 3 to 4 weeks Lyme. Unfortunately, there are many strains of Babesia and they are only able to test for two.

 

Again, I believe its variable due to co-infection status, immune system response and length of illness.

 

Hoping your husband is fully recovered soon.

[KeithandElizabeth]

I have heard that the CD 57 (killer cells) is a good number to follow in lyme treatment for adults. Supposedly, a number less than 100 can be indicative of lyme and I think that a number above 200 is optimal. I know that Lymemom is very familiar with this bloodwork and maybe she can add her two cents.

 

Elizabeth

[smartyjones]

I have heard that the CD 57 (killer cells) is a good number to follow in lyme treatment for adults. Supposedly, a number less than 100 can be indicative of lyme and I think that a number above 200 is optimal. I know that Lymemom is very familiar with this bloodwork and maybe she can add her two cents.

Elizabeth

 

i certainly can only add only about 1/100 of a cent , if that -- lyme mom will have to add hers. i did recently speak with somone from igenex in person about determining when lyme is gone. he spoke way too fast and above my head -- but, yes, he did recommend the CD57 as a test when trying to discover if you're recovering. but, then when i reiterated i was talking about a child, he confirmed it would not be helpful. that's usually covered by insurance, right? i believe -- he suggested a PCR test for children -- i was a bit confused b/c my head was spinning as i was talking to him.

 

that may be helpful in your situation to 'convince' your dh.

[MichaelTampa]

I remember my lyme doc telling me that most people feel substantially better after 1 month. Now, he treats with IV abx. And he does treat much longer-term, and there can be a big difference between killing enough bugs to feel substantially better and really having done everything you need to do to be over it and no longer needing any treatment.

 

As others have said, what the person really has, and what strain, can matter a lot in terms of how quickly things go and come back. This is why having a doctor really experienced in this can be very helpful.

 

CD57 is a marker that some use to rely on, it has been very telling for my progression. 200 is seen as normal, and stopping treatment before you're up to 100 is seen as a bad idea in terms of the chances of going back downhill. CD57 is something you can't get from Quest, but can from LabCorp, I think it's like $150 but with insurance I pay like $15 for it. CD57 is only a marker for borrelia, not any of the coinfections, so, people who stop treatment with a good CD57 score can go downhill if the coinfections were not treated.