I just left a comment on an earlier post about testing for Babesia. Looks like you already did it!
You have tested positive for Lyme and Babesia. Lyme is famous for producing varying antibodies over time. You could test different every time.
If your LLMD only treated you with Doxy in the past, then that's not a very well informed LLMD. Doxy does not cure Lyme once it's past the early stages. Dr. Eva Sapi has shown in lab tests that Doxy triggers many of the spirochetes to curl up into ring forms and to form cysts to hide from the immune system. That's why even long term Doxy is insufficient.
A good LLMD will generally treat with two antibiotics at a time, which is far more effective than just one. If you've had it for more than 2 years, Minocycline by itself likely won't finish it off either. (Watch out for dizziness, which is almost universal in women who take Minocycline.)
What did your doc say about the Babesia positive test? I don't put much stock into conclusions about "old", "new", or "past infectious" based on the type or number of antibodies for tick borne diseases. These assumptions come from experience with other infectious diseases. But Lyme is really different from anything else we know. I had had Lyme for 6 years when I finally had a Western Blot. I was severely ill, going into the hospital a couple hours after my blood draw for the test. And yet I only showed very low antibodies on my IgM, with only a band 41 on the IgG. According to conventional wisdom, I had a mild, early infection. Hah. In reality, I had a severe late stage infection.
And mainstream medicine knows little about Babesia. There has been little research done, so must real knowledge comes from LLMDs who have been treating it for years. The IDSA guidelines are awful in that they say not to treat it without laboratory confirmation. But even the CDC admits that current testing is poor, missing many cases. I read about one study where labs only found 1 in 4 actual cases. The Red Cross is worried about it in the blood supply because they don't have a reliable test. And yet the IDSA says don't treat it without a postive?? Obviously the authors of that policy never had it themselves.
Some cases are easy to treat. Others are tough. Mine is a stubborn case. I still feel really crummy almost 6 months into treatment. I am making progress, but it's slow, and limited by my body's ability to keep up with the treatment.
If you have Babesia antibodies and shortness of breath, then you are sick with Babesia. You need to be treated for it. If your "LLMD" isn't going to treat it, you MUST find another one. Lyme treatment usually fails to eradicate the disease when Babesia is present. This could be a part of your previous treatment failure. There is some kind of synergy between the two diseases that we don't really understand and I can attest to that!
I had heat intolerance with my Lyme, so that is a risk for you heading into a hot climate. I have heard that others were cold intolerant and loved summer as a result, so heat intolerance isn't universal. My breathing, brain fog, and fatigue got worse almost immediately in hot air. I also developed temperature regulation problems along with strange, random sweating (which was from the Babesia), regardless of whether I felt hot or not. Getting into an air conditioned room helped almost immediately.
Since your lungs hurt (as mine have, too), be sure to stay very well hydrated. Drink water frequently. I have it with me at all times, and always sip it in the car with the a/c running. While cool a/c rooms help, the dry air of a/c doesn't. I have a dry mouth spray that I carry in my purse so it's always accessible. A dry mouth means your lungs will get dry, too.
Do you take magnesium supplements? It has eased my air hunger for over a year, and when I asked my LLMD why, he said that it relaxes muscles. He said tense breathing muscles can add to air hunger, and relaxing them helps.
Wanted to ADD Igenx test in 2010
IGM Positive Bands 18+, 23-25+, 31++, 34+, 41+++, 58 + and 83-93 +
IGG only 41 IND
I got retested in 2012 test res8ults were IGG 58 positive and IGM 41 positive.
So my blood tests are all over the place.
There are others here more conversant with the detail of the bands, but here is what I keep taped to my wall, taken a while back from the website truthaboutlymedisease:
(Bb means Borrelia burgdorferi, the scientific name for Lyme bacteria)
23 = outer surface protein C (OspC), specific to Lyme, meaning ONLY Lyme will show up on this band
41 = flagellin (whiplike tail of the Lyme bacteria), could be Lyme and could be another spiral shaped bacteria
18 = highly specific to Lyme (many LLMDs say if this band alone is positive, you have Lyme)
23-25 = outer surface protein C (OspC), specific to Lyme, meaning ONLY Lyme will show up on this band
31 outer surface protein A (OspA), specific to Lyme, also reacts to some viruses
34 outer surface protein B (OspB), specific to Lyme
41 flagellin protein of all spirochetes (maybe or maybe not Lyme)
58 unknown but may be a heat-shock Bb protein
83-93 specific antigen for Lyme
I'm not medically trained, but these, along with your symptoms, sure sound like Lyme to me.
Why the drop off in strongly positive results between 2010 and 2012? Your immune system might be getting tired and stops reacting.
How you feel day to day is also important, and your symptoms sound pretty Lyme-y to me.
Don't know how the heat might affect you ... someone else can say.
I hope you are being treated by an LLMD -- you deserve it!!
Keep us posted.
I do have an LLMD however I don't feel like the doxy made anything better maybe worse, now have minocycline scared to start before I go in fear of herx. Now I also have a dry cough lungs hurt. I'm so tired of all of this. I get so frustrated. Wish there was a single cure , wish this bacteria wasn't so violent!!!
I take calm. It does help. My neuropathy which is primarliy left sided has been a real pain. I also have a lot of muscle pain in legs and arms. I twitch as well in leg and body muscles. I bought the A bab and starting tomorrow. Ill let u know. Thanks so much for ur responses. I feel very alone at times. People look at me and say I look great but don't know the pain I'm in. And ask when I will be better. I have no answers only want to survive to take care of my daughter and hope one day to have a somewhat normal life. So any and all of your help os greatly appreciated.
Rico has much good advice up above.
I agree that a new doc may be in order, tho I know that is the last thing you have time or energy for. Doxy is the old standard treatment for Lyme, but it works only in very very recent infections. And if you have co-infections (other diseases brought by the Lyme ticks), they likely need entirely different meds from Lyme and may not respond to doxy.
Everyone is affected differently, and as Rico notes, it takes time for even the best tuned-in doc to figure out what's going on. A doc who is both patient and knowledgeable is the key.
I was helped a great deal by magnesium (Mg) supplements, and I still take them today, after being well for quite some time ... it seems that magnesium is already low in the American diet, and Lyme bacteria use it up on top of that. Any variety ending in "-ate", like magnesium malate, orotate, citrate, etc., is said to be the most absorbable. My favorite kind is a blend of Mg has citrate, aspartate, and orotate in it. I've read that the kind combined with calcium (like 'CalMag') is hard to absorb. Mg will likely help with the muscle twitches and cramps. It did for me; I stopped hurting all over.
Minocycline makes your skin sunburn very easily, so you need to stay in the shade and not near the reflection from the water. Long sleeves, a sun umbrella ... OUT of the sun. It stresses you immune system to be burned, so even tho you'd rather be outside, you need to be where you can protect yourself from the rays. If you can find a shady place with no reflections off water etc., you should be okay. I don't know about whether Lyme tends to heat intolerance as well ... but I'd stay hydrated and get lots of rest.
Part of the reason you may be feeling worse are the herbs you are taking. When the bacteria die off, you can easily get what is called a Herxheimer (or 'Herx') reaction, which is feeling worse as the bacteria die off and release toxins into you body. If you are taking these of your own accord and not because of a doctor recommendation, you might want to ease off and see if it's less intense. At least while you're on vacation.
It looks like you are an hour or two north of NYC ... the good news is that there are good Lyme docs not terribly far away. If you email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel, they can send you the names of LLMDs. As you have already found, a doc who says he/she is an LLMD could be Donald Duck and totally clueless. There is no test or credential that makes one an LLMD: any MD can call him/herself that. It's more of an attitude that makes an LLMD, and an understanding of Lyme and what is going on in that branch of medicine. ILADS is the main voluntary group for docs who take a broadminded approach to Lyme ... more broadminded than mainstream medicine, that is. It is not uncommon to switch docs during treatment, because Lyme is a tricky area, and not all docs are equally tuned and, and may just miss something like a hidden co-infection. Doesn't mean they are bad docs (tho it could) ... instead it could be that they just have a blind spot.
I am with Rico in saying that if your current doc isn't cutting it, you have to find a new doc with a new view. I know it's the last thing on your list (after surviving Florida), but it's what I would do. I went through TWENTY docs before one of them, in desperation, tested me for Lyme, and it came back positive. The doc blew off the positive test result, tho, and said I couldn't possibly have Lyme .... so I took the test results, found an LLMD and kicked Lyme and babesia a few years ago. Definitely worth doing.
Let us know how we can help -- best wishes to you --