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Hi Everyone – This is my first post. This is such a great community for support. My symptoms started last July with chronic hives, still have it if i don’t take Zyrtec. Three months later i started to experience several bouts of lightheadedness and dizziness, severe night sweat, skin burning sensation, legs tingling especially after walking, muscle twitches, joint stiffness, hands tingling and numbing in the middle of sleep, muscle pain and weakness, extreme fatigue, several blotch of rashes, severe lower back pain and deep bone pain on both sides of my bottom, ants crawling under skins sensation all over body, joints cracking, eye floaters and blurred vision at night. The first lyme test from my PCP came back negative. ANA test came back 1:320 positive with anti-centromere high > 8.0 (normal < 0.9) Went to see a scleroderma specialist in NYC and she couldn’t diagnosed me since i don’t have skin and internal organ involvement. I have all the weird neuropathy, fatigue, arthritis and at one point my muscles weakness was so bad that my EMG showed as mild myopathy. I found the AP doctor through roadback and Maz. The doctor ran igenex western block test, the test came back igM 31++ and 41++, so I am Igenex Igm Positive, but CDC negative, my IGG are igenex and CDC negative. I was put on minocycline 100 x2 a day. I don’t have much herx reaction and right away the third day my buttock pain was eased a lot, my fatigue and neuropathy were better too. After about three weeks into the minocycline, i went to see an infectious disease doctor and she ordered Lab corp western block test, this time only band 23 in IgM is positive, 41 and 31 are not present any more, isn’t this weird?. Now i am almost in 2 months, I started to have stomach cramps, diarrhea and bloating from the medicine though i am on 150 billion probiotics. My neuropathy, night sweat, hands numbing during sleep also slowly returned. I am very confused by the two wester block test 3 weeks run by two labs and showed different bands.
(1) Do I have lyme or scleroderma or maybe I have combo?
(2) Why didn’t I herx at the beginning, but all the symptoms are slowly returning though i am still on medication?
(3) With my gut issue, can I lower my dosage? Thank you for reading and any feedback is greatly appreciated.Hi Nina,
Have you had any recent thyroid and adrenal tests run?
I am very confused by the two wester block test 3 weeks run by two labs and showed different bands.
Different labs will produce different results. This is true even for thyroid labs between Quest and Labcorp. Each lab will vary quite a bit in terms of sensitivity and specificity due to testing methods used. Once one has tested positive for Lyme, there is no need for further testing, because it is a chronic, persistent infection and antibodies will usually wax and wane over time. In fact, some people don’t test positive initially, but upon retesting after starting antibiotics, they become seropositive. This may be because Lyme is a very tricky bug that manages to evade immune system detection very successfully.
(1) Do I have lyme or scleroderma or maybe I have combo?
This was the question I asked my first LLMD at my initial work-up. I’ll never forget, as I was so afraid of having rheumatoid arthritis and thought it would be far better to have a treatable infection than to have to be on immune-suppressants for life. He replied, “Well, you have both RA and Lyme, but once we get the infections sorted out, the RA should begin to remit.” He was absolutely right! He’s a very brave man, because I think I was one of the worst cases of RA he’d seen in his office, every joint affected, including my jaw, and had to be helped into his office. Within several months, after terrible herxing, my lab markers began to come down. By the end of the first year, I was about 50% improved. So, the way I was led to understand it, my doc believes that rheumatic diseases are caused by infections and that by controlling the infections, the disease state remits. Lyme can look like and mimics everything under the sun…its known as the “second great imitator,” the first being syphilis, a similar spirochetal infection.
(2) Why didn’t I herx at the beginning, but all the symptoms are slowly returning though i am still on medication?
Degree of herxing is often relative to degree of pre-existing inflammation (and ability to detox). I had a lot of inflammation in the beginning and so my herxing was monstrous. Do you know what your inflammatory markers were prior to starting antibiotics? Quite often SD patients report little to no herxing, unless they have an inflammatory overlap with another rheumatic disease. Sometimes herxing comes later, however, and it’s possible that the symptoms you’re experiencing now is a manifestation of herxing. This is something to discuss with your doc, as you may require additional antibiotics and to add another probiotic with specific strains. Usually, Lyme docs will combine antibiotics of different classes, because Lyme is a shapeshifter and different antibiotics target these different forms.
(3) With my gut issue, can I lower my dosage? Thank you for reading and any feedback is greatly appreciated.
Well, with Lyme, it’s not advisable, because lower dosing can result in resistance issues. Lyme is already a very hardy bug. You could, however, ask your doc if a longer pulse method would be advisable (though with SD, daily dosing is preferable). E.g. 3 weeks on abx and 2 weeks off. This allows time for a big enough die-off of the bug with a heavy hit, then a period of rest, allowing the bugs time to regroup to hit them again. As a heavy herxer, this method was very hard for me, causing hypersensitivity issues, so daily dosing and keeping the pressure on that way was easier for me to handle. You, however, may do fine with this. However, I personally would not adjust my dose without consultation with the prescribing doc. A stool test, for instance, might be in order, to check for gut overgrowth (SIBO), parasites or candida. Sometimes, when you hit one bug, others come out of hiding and so it can need a 1-2-3 type punch.
Hope this might help in some way, Nina. I can’t remember the doc you went to see…if integrative, though, they should have provided some instructions about what to do in these instances. Here is info on what my Lyme doc provides to all his new patients:
Patient Consent Letter
– Antibiotics destroy “good” bacteria (probiotics) in your intestinal tract essential for
proper digestion, detoxification, and your overall health. Replacing good bacteria is
necessary and is not optional. Try to take your probiotics at least one to two hours after
or before your antibiotics. If this becomes too complicated and you are missing doses,
take the probiotics at the end of your meal. Use Multi-Probiotic (or equivalent of at
least 8 billion organisms) 2 capsules once a day, Theralac one capsule once a day (1-2
times a day if any loose stools occur), and Saccharomyces boulardii 1 capsule 2 times a
day. You may take Theralac and Saccharomyces at the same time, however try not to
take Theralac and Multi-Probiotic together. If you are taking Nystatin then you would
only take the Multi-Probiotic and Theralac.– If stools become too loose, increase your acidophilus and stay strict with the yeast-free, sugar-free diet.
– If loose stools persist more than several days and/or become watery, stop all antibiotics (not including Plaquenil and Lariam if prescribed) and call the office so we can send you to a lab to test for C. difficile toxin.
-If loose stools persist despite use of Multiprobiotic, Theralac and Saccharomyces
boulardii, please order VSL3 (www.VSL3.com) and use ½-1 packet per day to increase
the number of probiotics. Please call us if loose stools should persist.– C. difficile is a normal intestinal pathogen, but elevated amounts occur when the normal intestinal flora is altered,
allowing C. difficile to flourish in the intestinal tract and produce a toxin that causes watery diarrhea.
There are several strains of C. difficile, which are extremely toxic and life threatening, and the use of probiotics (acidophilus)
daily is essential in preventing a C. difficile infection and must be strictly taken when on the antibiotics.Thank you so much Maz. You have a wealth of knowledge. I use doctor in Berlin CT. But i can only get in to see his wife. For some reason I miss those very important information. I am going back to see her next week. My inflammation mark was in normal range. Maybe that’s why i didn’t herx at the beginning.
May I ask what is Nystain. I was going through lots of post on this website, it seems to be everyone is using Milk Thistle to detox, but she gave me Cognease Detox from Beyond Balance. Wondering what’s the difference.
Another challenge is that how do you control yeast overgrowth? especially the thrush on tongue?
I thought most lyme patients get treated by doxcycline first, yet I am prescribed minocycline which makes me think why i was diagnosed as Lyme but treated by scleroderma dosage and medication.
Thank you Maz so much again!!
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