Topic: Need help again. Is there a doctor in the house?
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was told by the LLMD to quit all abx until she gets test results back, which she decided would be a month. I can't get her to respond and I had the tests done three weeks ago. It was for the MTHFR mutation plus a lot of other things - 33 vials of blood.
I am really worried about doing nothing, I started supplements on my own and also teasel root, japanese knotweed, crytolepsis, cumanda and stephania. I have done one round of coartem (left over).
Overall I am doing ok but I have aching in my lower legs at night especially the left which has a slight swelling above the ankle on one side. I always thought this was residual bartonella. This started up after quitting doxycycline.
I switched estrogen five days ago from triest to biest. The day before I was low and did not have enough to take. That was the evening I began getting hot flashes and sweating. Is this caused from the switch in meds or babesia coming back?
I treated babesia duncani with high dose mepron/malarone and rounds of coartem, for 11 months. At the end of that time with untreated borellia, my CD57 in Oct was 37. I had some joint pain that came and went, and the aching in my lower legs.
When I developed stabbing pain in one knee I started doxy and all of the symptoms disappeared. A month later I went to see this doctor who took me off everything.
Sorry, I am asking for a doctors opinion, but mine is not responding and seems to believe I can just ignore what is happening. I have a cupboard with abx and a little more I can get from the pharmacy. I could start malarone again. I could try to get my doxy refilled. I have tindamax.
Now I have occasional very mild joint pain, mainly in one knuckle, the hot flashes and sweating which are mild and mild aching in my lower legs.
Although I am not terribly sick right now, you know how quickly these infections can take over. How many times have I been reminded not to quit treating until 100% symptom free for two months?
Taking a break to detox is not a bad idea but not doing anything scares the *&%$ out of me. I know herbs will not control it (for me) for very long. I sent two emails to this doctor explaining this but she is unmoved.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I think the question is why do you keep relapsing. We will all have these bugs in our bodies until we die, it's just our immune systems are supposed to keep them in check.
I found out I was relapsing because of mold. I just got home after being away during the gutting of my upstairs bathroom. This is the first time I get home from somewhere and my house doesn't make me feel ill.
None of the mold in my house was visible, we couldn't smell it either, but the guys found it. It was growing behind the tile shower. We also had it in our basement, we had a water pump leak that had saturated the rug.
I don't know if this might apply for you but it was a big part for me.
Posts: 845 | From Northeast | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is a big discovery. Our house is ten years old and we built it ourselves so we know exactly what is in it. I was surprised when we removed some of the carpeting (because the now gone old dog was vomiting on it for years), that it was not moldy. We replaced it with a wood floor. There may be some mold spores coming from the furnace. I am always a lot sicker in the winter but I just thought it was because lyme is more active then.
I started the MTHFR mutation vitamins and a bunch of other supplements, on my own. I keep learning and applying everything new that I discover.
I need a good doctor. I have tried really hard to find a "top notch" LLMD but none of them really give a hoot. They aren't that intelligent, informed or committed. They don't put all the pieces of the puzzle together. I just don't trust them.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Neff,
If it were me, I'd go back to what you were taking when you felt like you were making progress...supplements, meds, etc.
I've made the mistake before of stopping something that helps just because a doctor told me it couldn't possibly help. But I paid for that stupid mistake and now I wish I hadn't listened to the guy...
Well, I learned my lesson, and now I question everything a doctor tells me until I understand why they are telling me what they are.
And I've even argued with one doctor about stuff he'd said that contradicted what I'd read in research articles online, and then he acknowledged that he didn't read those articles. So it pays to be a well-informed patient IMHO...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks Razzle,
I just got a recommendation for a very good LLMD that sounds tailored made for me. Even though the doctor I saw last may be on to something important as far as the mutation goes, she is not treating me, It seems a lot of LLMDs are fearful of immediately prescribing meds to protect their license.
I am doing ok right now but all of that can quickly change. I know from experience. I have a lot of malarone left and hopefully can get a refill on the doxy.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Switching around your estrogen could definitely cause hot flashes.
Posts: 1748 | From United States | Registered: Dec 2011
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
The symptoms you mentioned sound like they may be from something other than Lyme related illness. Are you really sure they are babs, bart or Lyme?
If you take a bunch of different supplements, drugs, hormone replacement - it's difficult to know which thing is helping or which is a side effect or doing nothing.
If you have been ill for many years - taking a month off from taking abx isn't going to make you get worse - just my opinion...
Maybe your body needs to detox from taking the abx for so long. I don't mean to sound harsh or like a "devil's advocate" but if what you were taking isn't working - maybe you need to try a different approach...?
If your liver is in good condition - you may not need the estrogen replacement. I think estrogen balance happens in the liver. Maybe you need to try detoxing a bit more...?
Just my opinion - I'm not a doctor.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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