I'm not sure if this is still Lyme related

I posted the following back in July: https://www.healingwell.com/community/default.aspx?f=30&m=3882720

The bottom line for that post is that the first doctor I went to prescribed docy at 100 mg/2x per day for 10 days. After not feeling well, and the first doctor not willing to increase the dosage, I went to a second doctor who treats missionaries who have gone overseas for various things. He prescribed doxy at 200 mg for 30 days. I finished up the course of antibiotics about 3 weeks ago, but a few things still don't seem right:
1) I worked out at my in-laws place cleaning overgrowth last weekend. Temperature was around 95%, and what shocked me was that I could only work around 10 minutes, and then I'd have to take a 15-20 minute rest. I can tell my body is slowing down, but I really couldn't believe how little I could work before I 'had' to take a break. I'm 54, so I see things slow down, but not that much! I've not worked outside much this summer because the intensity of the sun has become very difficult to tolerate, but there are things I need to do.
2) I still have the sensation of bugs crawling on me, and this has awakened me the past couple of nights. There is nothing on me, and I feel it occasionally during the day, but at night it can drive me crazy.
3) I'm losing my breath, and the crazy thing is that I feel this when I'm lying down trying to go to sleep. I've noticed that during the day, I'll suddenly take a deep breath, which may not be related.

I thought that I had contracted Lyme by around June of this year, but I just remembered last Thanksgiving when I came down with the flu. I literally couldn't get out of bed for a few days, but I'm self employed, and if I don't work, I don't make any money. For about 3 weeks, I did what I had to do, and I spent a lot of time sleeping. I've never been that sick in my life. We have 5 kids, and no one came down with the flu. I've heard that Lyme will give you flu like symptoms, but could that have been from Lyme? I wasn't sure how intense the symptoms might be for Lyme. I've gotten ticks out there probably most weekends I go there, but I sweat profusely (I'm talking about sweat running off, even when it's not that hot), so the spray doesn't stay on. Even last weekend, I had my socks around the bottom of my jeans, shirt tucked in, and everything sprayed down. I still came down with 5 ticks attached to me afterwords. I sit behind a monitor during the week, and I really like getting outdoors, but the number of ticks is insane.

The last times I went to the doctors' offices, it cost me over $200 per visit - our insurance is for catastrophic use only because it's so expensive. I can't imagine what the tests will cost if I go that route, and I've heard they are not very reliable. I don't know what to do, and I don't have money to throw around. I've read that Dallas (about 200 miles away) is probably the place to go to. Does anyone have any thoughts or suggestions? Thanks a million.

Hi again, some of your symptoms(Air hunger) lead me to believe you possibly have the co infection Babesia. However many of the Lyme symptoms can overlap with the co infection symptoms.


There is a list of symptoms on our new to Lyme thread at the top of the page and here are some more links to check out.

http://www.gordonmedical.com/unravelling-complex-chronic-illness/babesia-like-organisms-bablo-consideration-signs-and-symptoms/

http://www.lyme-symptoms.com/LymeCoinfectionChart.html


Hope this helps, Jo

I can give you insight on "bugs crawling on you".

This happened to me last year after taking doxy.

It's not the doxy that directly causes this but indirectly. ABX kills good bacteria and flora in and on your body. Even the friendly bacteria you need on your skin.

When it does that, bad bacteria and skin fungus are not kept in check by the good bacteria, so you get the sensations. And it's worse at night.

You need to replenish the good bacteria and address fungal issues for the symptom to halt.

It worked for me.

Hi Baskervi -

I'm sorry you're struggling like this.

Your story sounds very similar to mine. I was in my first year after moving to NYC (and traveling all over the northeast) when I came down with what I kept being told was really bad flu, upper respiratory infection. I was bed-ridden for two weeks. Then throughout the following year I'd have 4 good weeks then crash for a week... this went on month after month after month. No one and nothing helped.

Then the second year the episodes were less frequent... this continued for years and then would primarily show up only when I got run down (high stress, lack of sleep, not eating regularly).

The MDs blamed it on chronic sinusitis and blamed me for too much stress and not taking care of myself. OK, fine. I had this recurring "flu" (right...) but none of those "diagnoses" explained the air hunger (Jo referred to this - it's a name given for the weird breathing, not getting a deep enough breath, hits when you're trying to sleep sometimes), or the sore legs or the confusion, memory loss, word loss, areas of my legs going numb, etc...

I was living in an endemic area and still, no one thought to test me for Lyme because MDs are generally disinformed about early Lyme sx. 16+ years later, I finally got diagnosed and started tx.

LLMD
Anyway, you've been given good info regarding finding an LLMD. It's critical you call for an appt ASAP - 99% of MDs will not be able to diagnose you properly or work around the poor testing.

Lyme is a clinical diagnosis - test are not to be used solely, definitively
Hidden on the CDC's website is a clear directive that the testing methodologies the CDC recommends as the ONLY "approved" testing protocols are not to be used solely for diagnosis (they are designed for disease surveillance purposes, not diagnosis) and that MDs need to clinically diagnose. But they buried this directive and most MDs are unaware of it, or choose to ignore it. This is why LLMDs are so critical to a proper diagnosis and treatment.
www.cdc.gov/lyme/healthcare/clinician_twotier.html

22 Reasons tests are wrong
whatislyme.com/22-reasons-why-your-lyme-test-may-be-wrong/

Take action now
At the very least, we can help you do several things while you wait to get into an LLMD (the wait is generally very long - took me 6 months for my appt).

Detox
First, you can start detoxing. Lots of info online and on the forum about detoxing.

Try to get some abx from any MD
One approach is to try to get some abx while you're waiting to see your LLMD. One way is trying to convince any MD to at least give you abx based on your sx. Again, Lyme is a clinical diagnosis and your symptoms are KEY to a proper diagnosis. Not all MDs are going to know how to interpret and some won't on principal, but it's worth a try. It's also VERY important for you to document your current and ongoing sx for your LLMD. Might as well get a head start.

Symptoms are KEY to clinical dx
Here is a questionnaire to take that might help - and the location of the CDC statement on a clinical dx that you might be able to use to convince an MD to give you abx. The strategy is to get as much as you can and then when you're nearing the end of that course, find another MD for a "second opinion", etc...
Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

IGeneX Western Blot
Another option is to walk into Urgent Care/ER and demand an IGeneX Western Blot IgG and IgM and see how far you get... or you can order it online yourself, get it done and bring results to an MD. MDs might try to give you a regular Lyme WB but don't spend the time and money on it. The test you need is IGeneX Western Blot - there is info on their website. I'd get the IgG and IgM for Lyme.

IGeneX is most reliable WB
- IGeneX processes over 20,000 Lyme tests a year (this stat is likely a few yrs old), and can adhere to a more specialized structure than the CDC regulations.
- IGeneX includes band 31 in their testing, and also offers 30-31kDa confirmation-these bands are often positive due to cross-reactivity with other viruses, and
- IGeneX uses highly specific recombination antigens to validate results.
- In addition, IgG needs only 2 bands present (instead of 5), and the IgM needs 2 (like the Western Blot).

If you run into roadblocks getting the test ordered from an MD, here is a site where you can order the test on your own w/out a physician's order. Be sure to check for "draw locations" to make sure there is a lab near you.
www.truehealthlabs.com/Igenex-Lyme-Tests-s/1870.htm

Lyme Western Blot Test IgM
Regular Price: $310.00
Your Price: $179.00

Lyme Western Blot Test IgG
Regular Price: $310.00
Your Price: $179.00

Provoke a more accurate immune response
While you're waiting for the test to arrive, some people have better success navigating around the poor performance of the test by "provoking" a stronger immune response with an immune booster like taking Olive Leaf extract for a minimum of 4 wks.

The Western Blot tests are serology tests, meaning they don't look for the microbe itself, but they look for the immune system's response to the microbe in the body. So the serology tests measure antibodies. There are several reasons the Lyme tests are 50% reliable--and most of the reasons have to do with the fact that the Lyme microbe is very stealthy and can disable a normal immune response. This is the reason that it's helpful for some people to provoke a stronger immune response with the Olive Leaf extract, which is an immune booster.

We'll help you interpret results
And then you can post your results here and we can help you interpret the results (which are also skewed toward CDC's disease surveillance criteria, not diagnosis) and is another key reason why the tests are so unreliable--regular MDs don't know how to properly interpret them.

Use a positive test to circumvent the issues MDs might pose in refusing to test you or using the wrong test
With a positive IGenex, It's more likely that even an ill-informed MD will at least give you some abx... and then when you near the end of that course you can take your case to another MD for a "second opinion" and try to get more abx. I'd find an LLMD and get an appt ASAP and then try getting abx while you wait (there is almost always a wait to get into LLMDs - could be 3-4 months so might as well see if you can get some abx while you wait).

Alternatively, you can start on herbs right away. Lots of info about various herbal protocols - but I'd post a new thread specifically asking for herbal protocol advice.

TOTALLY agree w/ decarte3 about the fungal "crawling". Any abx protocol should include natural antifungals, or antifungal Rx. But there are several things you could take now to help reduce yeast/fungal overgrowth. The last post in the "New to Lyme?" thread also has info on y/f but it's LONG...

Hope that's helpful.

-p

dacarte3 - once again, it just shows that we are all different. I think I've had the fungal thing for 30 years, not as a result of the lyme, which I had for 10, so it was/is my deeper issue.