Question about Lyme and SD

[kerry23]

You know the old saying, “Which came first? The chicken or the egg?” Well, that’s what I want to know. In June being diagnosed with SD, CFS, Sjogrens, and Fibromyalgia and fighting to find a MD who would treat me with Minocin (AP). I finally found Dr. B. in Rhinebeck NY in October, who saw on my medical records of band #41 reactive and lyme screen of 3.76, so of course, Igenex was the first step. Diagnosis: Lyme with Bartonella (long term, chronic) obviously. So what came first? The lyme or the SD? My guess is, after researching, the lyme causes autoimmune disorders and mimics other disorders so I am assuming that lyme is the starting path???? I have also read that Minocin is the drug for SD, is that true? If so, I am able to “kill two birds with one stone” so to speak.
I met some doctor online and he said he never heard of anyone having lyme antibodies and scleroderma antibodies, is this unusual?
Is the treatment of Minocin 100mg twice a day a normal for lyme disease?
Is the treatment for the Co infection Bartonella with Levaquin 500mg once a day sound right?
What is the standard treatment for Babiosis (spelling incorrect)????
Thanks for anyone’s help or input….
Kerry

[Maz]

@kerry23 wrote:

You know the old saying, “Which came first? The chicken or the egg?” Well, that’s what I want to know.

The lyme or the SD? My guess is, after researching, the lyme causes autoimmune disorders and mimics other disorders so I am assuming that lyme is the starting path????

I have also read that Minocin is the drug for SD, is that true? If so, I am able to “kill two birds with one stone” so to speak.

I met some doctor online and he said he never heard of anyone having lyme antibodies and scleroderma antibodies, is this unusual?

Is the treatment of Minocin 100mg twice a day a normal for lyme disease?

Is the treatment for the Co infection Bartonella with Levaquin 500mg once a day sound right?

What is the standard treatment for Babiosis (spelling incorrect)????

Hi Kerry,

Nice to meet you and happy you found us! 🙂 You’ll find lots of SDers here with Lyme and coinfections, so you’re in good company.

I had a similar question to you when I first got Lyme and then RA. I asked my LLMD what I had…whether it was really just Lyme or RA with Lyme? He said it was both and that the Lyme had triggered the autoimmunity (or what appears to be autoimmunity but are hidden and intracellular infections tricking our immune system to attack our own tissues) and that once my pathogen load was cleaned up, my RA would remit. Here is a short video that explains why Lyme appears to look like “autoimmunity.” It’s focused more on neuroborreliosis, but the same mechanism applies in all cases of Lyme where AI is triggered.

http://envita.com/sections/disease/lyme/default.aspx

Yes, minocycline is the preferred tetracycline for SD, primarily because it has such excellent lipid solubility that enables superior tissue penetration. The doses used in Lyme can sometimes be higher. I’ve spoken with some Lymies who take 300 or 400mg mino daily. However, this can be a difficult dose to tolerate, as mino crosses the blood/brain barrier and may induce intracranial hypertension (sometimes resulting in dizziness and headaches). Everyone is different in what they can tolerate, however. The doses and abx combinations used in Lyme are significantly higher, in general, to low dose AP as used by Dr. Brown, but minocycline is the best abx for SD, in particular, whatever else may be added to the protocol.

Yes, levaquin is one of the abx used for bartonella. Rifampin is another. Levaquin is quite a heavy-hitter and there are some side-effects you may want to be aware of when starting it, just to remain alert. There are currently known to be 26 strains of bartonella and each has different disease-causing potential and may take longer or shorter times to treat. The usual round is about 3 months of treatment with levaquin, I believe, but it may take several rounds, depending on all sort os things…possibly strain, stength of immune function, how well drugs are tolerated, etc.

Treatments for babesiosis vary…again, for various reasons…strain, degree of severity, strength of immune function, etc. These treatments normally include drugs like azithromycin, clindamycin, flagyl, tinidazole, mepron, malarone, etc. Length of treatment may depend on the life cycle of the organism, too, and lifespan of red blood cells, as babesiosis is an intracellular red blood cell parasite.

You can go to the following links and print of both the ILADs and Burrascano treatment guidelines for Lyme and coinfections, which will give you a complete 101 of the gold standard for treatment used by LLMDs for Lyme.

http://ilads.org/lyme_disease/treatment_guidelines.html

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

Hope this helps, Kerry? Well done finding Dr. B…I understand he’s a great doc!

All the best as you begin treatment…it can be a long old road back to wellness with Lyme and coinfections, but you’ll have pretty good abx coverage by going to an experienced LLMD. 😉

[Lynne G.SD]

Hi Kerry;
Nice to see you have found this site.Big difference with the other,no? Never in my life have I seen so many people depending on such heavy drugs.No wonder they keep getting sicker and sicker.
Lynne

[Kim]

Hi Kerry and welcome to the Roadback forum. 🙂

You asked which came first, the Lyme or the SD? Since I have both, I am now convinced (although impossible to prove) that my Lyme infection came first and that induced my SD. Treating Lyme has done wonders for my remaining SD symptoms.

You can read what all I’ve done to get better in the link in my signature line if you’re interested.

Take care…..kim

[kerry23]

Thank you for all the informative advice/opinions. I feel like I am a long term herx. After starting second antibiotic, Levaquin, I am so stiff and in pain. Some symptoms have eased others have worsened. I wake up every night crying in pain because I can’t move. It takes about 15 minutes to find my way out of bed, even have trouble pulling the covers off me as my elbow is locked in pain. I am hoping it’s just a herx, but for heaven’s sake, how long is it going to last. My moods and memory are shot, I get so confused and depressed that I walk around in circles. I am glad I found this site and I thank you all.
It’s so nice to hear happy endings, but these endings are almost endless. All of you are still taking meds and/or having flares.
Is anyone cured? Having lyme and SD, I really don’t see a light at the end of the tunnel. On the other hand, I try to have a positive attitude but it usually short lived. The mornings are my worst. That stiff neck at the base of the skull with the pain level of 10 just blows me away!
Sorry to be complaining, I feel that’s all I do. I feel like no one wants to hear me anymore. They figure, she is on meds, she’ll be okay…..Not yet.
Thanks for listening.
Kerry

[Lynne G.SD]

Hi Kerry;
I think a lot of people here know exactly how you feel.Herxes are very strong for me each time I add a new med but after a couple months they subside a lot.Trouble is that my doc rotates my antibiotics so each time I have to adapt again but it usually is not quite as bad.Zithromax was the worst for me.If I can add up all the days that I have had herxing I figure about 3 years worth in 11 years of AP.Nice thing is that the SD is totally gone and I sure hope that eventually my immune system will be strong enough to fight the Lyme.It is such an insedious disease that can affect the brain and turn one into a raving lunatic if untreated provided you live long enough to reach that point.I just take things day by day.

[Maz]

@kerry23 wrote:

It’s so nice to hear happy endings, but these endings are almost endless. All of you are still taking meds and/or having flares.
Is anyone cured? Having lyme and SD, I really don’t see a light at the end of the tunnel. On the other hand, I try to have a positive attitude but it usually short lived. The mornings are my worst. That stiff neck at the base of the skull with the pain level of 10 just blows me away!
Kerry

Kerry, you can vent all you need to….Lyme is horrendous (wholly underestimated by the mainstream) and you sound like you’re in the same rough shape I was in the beginning, too. Everything hurt on a scale of 10 out of 10 from head to toe…just frozen in pain – muscles, joints, tendons…the only thing that didn’t hurt was to blink, literally, and even eating was difficult with the TMJ and frozen jaw. The first 3 months were the hardest with herxing for me and then things started to improve in very a very slow 3 step fwd and 2 steps back all the way. There is no getting around it that, for some, it’s a painfully slow process and I estimate I probably got to about 50% improved in my first year. I know this must sound hard to hear, too, but the alternative isn’t pleasant. Immune-suppressive drugs just make Lyme and coinfections worse, as they proliferate and disease symptoms are just masked, slowing progress. It’s better to work at the road to wellness slowly than to be on a lifetime of some serious drugs in ever-increasing doses.

Remission is very possible with Lyme, but as Lynne said it’s so important to work at improving immune strength, as it’s virtually impossible to eradicate Lyme and its tagalong friends entirely. According to my Lyme doctor, relapse is more the norm than not with chronic Lyme, after remission is reached, and this is why many Lymies will remain on maintenance doses to keep it there.

There are some things that can be done to help relieve the pain…one very worthwhile investment is a far infrared sauna…not only for pain relief, but to help get rids of toxins. Borreliosis hates this deep heat, too. This type of sauna simulates fever, which is the body’s natural way to kill bugs. In the case of SD with Lyme, SDers have a hard time sweating and detoxifying …so FIR saunas help in this respect. There are some pretty reasonable FIR saunas out there in portable models, ranging from around $300 and up…carbon-paneled models (rather than ceramic) heat up faster and use as much electricity as a toaster. They’ve actually been approved by some insurance companies for RA and it’s possible to get tax relief, too, when doing the annual tax return, if one has a physician’s script stating that the “FIR sauna for this patient is medically necessary.”

Really hope it won’t be long until you can turn this beast around…we’re all here and you’ll have plenty of support to get through this. Many of us have been right where you are now and we understand what you’re going through…hang in there!

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